During the six years of its existence, one frequent complaint I've had on this blog, it's been about how the press covers various health issues. In particular, it's depressing to see how often dubious and even outright false health claims, such as the claim that vaccines cause autism, that cell phones or powerlines cause cancer, or that various questionable or even quack remedies work for various diseases are reported credulously. Often this takes the form of a journalistic convention that is more appropriate for politics and other issues but not so appropriate for scientific and medical issues, namely telling both sides as though they have equal or similar weight. While this is fine for politics, it's not so great for discussing, for instance, the scientifically discredited notion that vaccines somehow cause autism. Yet, in such stories, almost invariably there is an anti-vaccine crank like Barbara Loe Fisher, Jenny McCarthy or someone else from Generation Rescue, or someone like Sallie Bernard from SafeMinds cited as though she were on equal footing, scientifically speaking, with scientists who have dedicated their lives to the science of vaccines. Sometimes, the story takes the form of a credulous acceptance of pseudoscientific claims, with a token scientist or skeptic tacked on at the end to give a small quote for "balance."
One exception to this profoundly annoying pattern (if you're a skeptic) has been the journalism of Trine Tsouderos, who with Pat Callahan, has produced over the last year or two a number of excellent, science-based stories on the anti-vaccine and its associated "autism biomed" movements, including an expose of Boyd Haley's "rebranding" of an industrial chelator as an autism treatment. She's even taken on "America's doctor," Dr. Oz. As a result, she's been demonized by cranks, up to and including having her face crudely Photoshopped into a picture of a Thanksgiving feast in which she and various others whom the merry band of anti-vaccine loons at Age of Autism view as enemies were portrayed as sitting down to a meal of dead baby.
Most recently, Callahan and Tsouderos published an article about the dubious diagnosis that is chronic Lyme disease entitled, appropriately enough, Chronic Lyme disease: A dubious diagnosis, which was subtitled, also quite appropriately, "There's little good evidence that chronic Lyme disease exists. Yet doctors are treating it with drugs that put patients and the public at risk." And so there is, and so all too many dubious doctors do. Because this article speaks for itself and is nearly two weeks old, which in blog time is akin to being two years old, I'm not going to discuss it in detail. I will say that it is quite good and lays out the issues better than I've ever seen them discussed in a mainstream newspaper or magazine. I'll also point out that chronic Lyme disease has become such a cause célèbre that in Connecticut the legislature passed a law to protect Lyme quacks from being disciplined by the state medical board for using long term antibiotics to treat chronic Lyme disease. In essence, as Steve Novella pointed out at the time, they carved out an exception to the standard of care and told doctors in Connecticut that they don't have to worry for not meeting it.
Don't get me wrong. Lyme disease is real. There does even appear to be a post-Lyme disease syndrome, which is seen in patients who had Lyme disease and now have chronic symptoms (such as fatigue, various pains, and difficulty concentrating) after having been treated. Indeed, this is even referred to as category 4 Lyme disease. What causes this syndrome is a mystery, and there is no doubt that there are patients out there with debilitating symptoms after being treated for Lyme disease, but current scientific and clinical evidence does not support the idea that these symptoms are due to a chronic ongoing infection or that prolonged courses of antibiotics do any good. Steve Novella has written a good treatment of the issues involved (here and here), as have Mark Crislip and Peter Lipson.
As good as Callahan and Tsouderos' article was, it's not surprising that it resulted in criticism. One criticism actually appeared in the Knight Science Journalism Tracker's blog in the form of post written by Paul Raeburn, former senior editor for science at Business Week, former science editor at the Associated Press, author of three science books, and director of a university science journalism program, entitled Chicago Tribune off balance on chronic Lyme disease. For the most part, it's an article complaining about the journalism of the article. Boiled down to its essence, Raeburn's complaint is the opposite of what we skeptics, scientists, and supporters of science-based medicine complain about all the time about journalists, namely that Callahan and Tsouderos did not fall into the trap of false balance, did not give undue credence to pseudoscience, and did not "tell both sides" as though they had equal or roughly equal credence. Indeed, Raeburn says just that much in the very last paragraph of the article:
In short, what Callahan and Tsouderos have done is to argue that chronic Lyme disease can't exist because the people who say it does are nuts.A far better approach would have been to report the evidence, pro and con, and to quote the most persuasive advocates for and against chronic Lyme disease-not the least persuasive. And to give both sides equal time to speak.
The first sentence, of course, is a massive straw man argument. That is not what Callahan and Tsouderos were doing at all. Seriously. I reread the entire Tribune Lyme article, and nowhere did they say or imply that believers in chronic Lyme disease are nuts. Of course, this is a frequent complaint that people who have been victimized by quackery use: That critics of quackery are calling them crazy. This sort of retort is common whenever it is pointed out that conditions that could well have a strong psychological overlay do, in fact, have a strong psychological overlay; those suffering from it will cry that you're calling them crazy. Remember when I discussed Morgellon's disease? Same thing. It's an easy attack, a veritable cheap shot, though. Yes, sometimes it's true, but far more often in my experience it's a cheap shot.
As for the last paragraph, I can't find a better distillation of the "tell both sides" mantra. Again, in the case of a genuine scientific controversy, this is not an unreasonable approach. However, it is not controversial in medicine that chronic Lyme disease is almost certainly not a result of actual chronic infection and that long term antibiotics don't do any good and can cause harm.
Raeburn also has a bit of difficulty in defining what does and does not constitute a legitimate medical authority:
Again and again, Callahan and Tsouderos give far more space to advocates making questionable claims than they do to experts who refute those claims, allowing the serious case for chronic Lyme disease, whatever that might be, to be buried under the dubious claims of advocates.
The reporters go on and on impuguning patients and advocates without ever telling us whether there is a debate among legitimate experts about whether Lyme disease might assume a chronic form.
Could it be, perhaps, because there aren't really any legitimate scientific experts who support the idea that long term chronic antibiotics are useful for the entity that is chronic Lyme disease? Could it be because randomized clinical trials have been done and don't support the efficacy of long term antibiotics to treat category 4 Lyme disease? Indeed, after pointing out that the nation's largest organization for specialists in infectious disease concluded that there is "no convincing biological evidence" for a Lyme infection that persists after treatment and continues to sicken and that three panels of experts from the Infectious Diseases Society of America and one panel from the American Academy of Neurology came to the same conclusion, namely that the diagnosis of chronic Lyme disease is suspect at best and that treatment with long term antibiotics is ineffective and risky, Callahan and Tsouderos write:
The evidence against the effectiveness of long-term antibiotic therapy is especially strong -- supported by four randomized, double-blind, placebo-controlled clinical trials.
Patients in three trials receiving long-term antibiotic therapy did not do significantly better than those receiving placebos. In one other trial, patients receiving antibiotics felt significantly less fatigued than those receiving the sham treatment, though many of the antibiotic patients figured out they were receiving medicine, a grave flaw in the study.
They also point out:
However, the clinical trials on long-term antibiotic therapy found it can cause serious, even life-threatening problems. In one study, one-fourth of the patients suffered severe problems linked to the treatment, including blood clots, infection and the loss of a gallbladder.
I call B.S. on Raeburn. For a news article written for a mainstream newspaper, this is a very good discussion of the evidence against long term antibiotics for chronic Lyme disease. I mean, jumpin' Jesus on a pogo stick! They even pointed out that one of the trials had problems with its blinding. What does Raeburn expect? A listing of the randomized, double-blind, placebo-controlled trials, the numbers of patients, the experimental designs, and the statistical analysis? Raeburn was also quite disingenuous in the way he framed this quote:
They then quote chronic Lyme advocates at length before introducing another expert, Dr. Paul Lantos of Duke University, whose quote, in its entirety, is: "Why take needless risks with people's lives?"
Go back and look at Callahan and Tsouderos' article, and you'll note that this quote by Dr. Lantos directly follows the paragraph I cited above about the complications of long term antibiotics observed in clinical trials up to and including the loss of a gallbladder. In context, Dr. Lantos' quote made perfect sense, particularly given how Callahan and Tsouderos follow that quote by pointing out an example, namely a 52-year-old patient in Minnesota who developed drug-resistant bacteria after 10 weeks of antibiotic treatment for a diagnosis of chronic Lyme disease.
Of course, the problem is that what Lyme advocates have for evidence is the same type of evidence that "autism biomed" advocates have for their woo: Anecdotes and testimonials. The blog Relative Risk describes this quite well as "a strange collection of aging, irrelevant works," consisting largely of case reports (i.e., anecdotes). And that's what Callahan and Tsouderos present, anecdotes and testimonials of Lyme advocates. The further problem is that Raeburn recognizes that this is a vastly inferior form of evidence but doesn't recognize that that's all Lyme advocates have. Particularly galling to Raeburn appears to be the passages in which Callahan and Tsouderos describe the illegal activities of many doctors pushing the idea of chronic Lyme disease against the standard of care, several of whom have faced legal difficulties. Raeburn appears to be particularly irritated by the singling out of Robert Bradford, founder of the Robert Bradford Research Institute in California, who was quoted as calling Lyme the "potential plague of the 21st century" and likening it to the Black Death, all while making the claim that Lyme disease might be a "contributing factor in as many as half of all cases of chronic illness." Callahan and Tsouderos pointed out that back in the 1970s, Bradford was convicted of conspiracy to smuggle a "banned cancer treatment." This actually brings me to one minor quibble I had about the Tribune article, which is that it didn't specify the banned cancer treatment Bradford got busted for smuggling.
That's right. Bradford was a Laetrile peddler. How quaint. Perhaps that was so long ago that no one remembers, aside from old codgers like me (and I'm not even that old--yet). In any case, mentioning Bradford's conviction was completely legitimate, as far as I'm concerned, because it indicates the sorts of advocates of unproven and dubious therapies who associate with chronic Lyme disease and promote all sorts of dubious treatments. Whatever condition patients suffering from the entity described as chronic Lyme disease have, such dubious treatments do them no service.
There's one other thing about this attack piece by Raeburn that is curious. It was clearly instigated by someone who appears to have an ax to grind. Why, I asked, was Raeburn so annoyed at Callahan and Tsouderos' article? There's a hint at the end of Raeburn's blog post, where which he thanks Pam Weintraub, features editor of Discover Magazine and author of Cure Unknown: Inside the Lyme Epidemic for giving him the heads-up about the Tribune article. I immediately noted that, Weintraub's book had the contradictory plaudits from the American Medical Writers Association in the form for award for best book, 2009 and from the creator of functional medicine woo, Mark Hyman. Weintraub, it is noted, shows up within three hours of Raeburn's post's "going live." It looks pretty obvious that Raeburn was asked or encouraged to post his hit piece by Weintraub and that he echoed a lot of the same attacks as Weintraub, who in the comments writes:
I am saying that you cannot quote a criminal as counterweight to a scientist, when there are scientists at major universities like Stony Brook, like UC Davis, like UC Irvine, like Berkely, who could be quoted instead, and who could present the the shades of gray and the true context for why there is all this uproar, and what these patients might be like and why they might be sick.
Except that that wasn't what the story was about. The science is quite clear that the remedies being peddled by many of the doctors cited by Callahan and Tsouderos have been shown to be ineffective in the gold standard of clinical trials: Randomized, double-blind clinical trials. I also looked for a few of these scientists, for instance, doing Pubmed searches for investigators at Stony Brook, UC-Davis, UC-Irvine, and Berkeley. I have to admit, I wasn't particularly impressed. For example, from Stony Brook, I saw a clinical trial from 2003 that appeared to show that antibiotic therapy was associated with improvement of debilitating fatigue. This study appears to be the very study that Callahan and Tsouderos cited as having had its blinding possibly compromised, as evidenced by the observation that more patients in the treatment group than in the placebo group correctly guessed their treatment assignment. From UC-Davis, there were a couple of mouse experiments, again not very convincing. From UC-Irvine I could find only one review article.
I could find nothing on Pubmed from Berkeley about chronic lyme disease, but maybe I didn't persist long enough.
The bottom line is that Weintraub's complaint is primarily also about how Callahan and Tsouderos didn't fall for the "tell both sides" mantra that all too many journalists fall prey to when writing about dubious medicine and pseudoscience. I'm not saying that there aren't criticisms of the Tribune article that aren't valid, but most would be minor compared to the main messages in their article, which, as far as I was concerned, were spot on: Chronic Lyme disease is, at best, a dubious diagnosis; whatever might be the cause of category 4 Lyme disease, it does not appear to be caused by ongoing infection by the spirochete that causes Lyme disease; and there is no credible evidence that long term antibiotic therapy is effective against category 4 Lyme disease and a lot of evidence that long term antibiotic therapy has the potential to cause harm. These are the key issues, and Callahan and Tsouderos nailed them. Raeburn and Weintraub's criticisms are nothing more than whines about how, in nailing these essential points, Callahan and Raeburn failed to fall for the trap of false balance.
This entire kerfuffle does bring up a legitimate issue, though. I complain frequently about how journalists fall into the trap of false balance when it comes to scientific and medical issues. However, it's often difficult to explain this concept to the lay public because on the surface not giving undue voice to advocates of pseudoscience appears to go against commonly believed and taught concepts of fairness. How can a blogger, journalist, or other writer, communicate this concept in a limited space? On my blog, I can write as long or short as I want and have days, weeks, months, and even years to communicate and reinforce this concept to my readers. Journalists don't have that luxury. I don't pretend to have the definitive answer. No doubt different topics and different situation will require different approaches. I do know, however, that it is lazy and ultimately unintentionally deceptive to continue letting the mantra of balance result in promoting a false balance when discussing quackery and pseudoscience. As long as you can defend your position with data, science, evidence, and logic, don't be afraid to defend science and science-based medicine.
- Log in to post comments
"Someone named Paul Raeburn" is Paul Raeburn, former senior editor for science at Business Week, former science editor at the Associated Press, author of three science books, director of a university science journalism program. If you had time to do a PubMed search, you had time to Google him. Delegitimizing him by suggesting he has no background or standing doesn't help your argument.
What difference does it make who Raeburn is? His arguments are no stronger if you know who he is than if you don't know who he is.
Tsouderos is a clown. Hitch your wagon at your peril. She is nothing but a tool of ASF and big pharma. I am agnostic on the issue of autism and vaccines but, unlike you, understand that "certainty" in science is a dangerous path to embrace.
Very interesting, chronic Lyme disease therapy is a scam I'd not heard of before.
If Trine Tsouderos and Pat Callahan are in need of a new subject to investigate they should look into the CCSVI/Zamboni liberation therapy for multiple sclerosis, a very dubious theory and treatment that has suddenly become very popular thanks to some very poor reporting by a Canadian news channel at the end of last year. As a result of this thousands of people with MS have spent tens of thousands of dollars each to have angioplasty performed on their neck veins...a pointless and potentially dangerous practice.
http://www.ctv.ca/CTVNews/WFive/20091120/W5_liberation_091121/?s_name=W5
http://www.theglobeandmail.com/news/national/paolo-zamboni-a-qa/article…
http://www.ticotimes.net/News/News-Briefs/Costa-Rican-Hospital-Offers-M…
CCSVI advocates have been lobbing the usual "pharma shill" accusations (and the occasional death threat) against scientists and doctors who have urged caution or argued against the theory that CCSVI plays an important role in MS, though I suspect that if anyone took a close look at the activities of a companies involved with CCSVI detection and treatment they would uncover some interesting relationships. I've also heard that the Italian freemasons are somehow involved, though just how deep the rot runs in the Italian government is not clear.
At the moment the reporting is very biased in favour of the so-called "Liberation therapy", despite the lack of scientific evidence for CCSVI being a cause of MS, and a lack of clinical evidence for "liberation therapy" having a beneficial effect. It would be good to see this imbalance corrected!
But the certainty of pseudoscience doesn't bother you one whit, Dadvocate? Give me uncertainty that has a foundation of facts and evidence over certainty based on faith and distrust of authority any day.
Dadvocate: Pharma shill fail.
Raeburn offers little or no evidence to support his claims. Neither do you. Tsouderos and Callahan present the best science available. Not unproven hope shaded as science.
Dadvocate,
If Trina Tsouderos is a tool of big pharma, an article about how long-term antibiotics are a bad thing would just get her fired. It doesn't make sense that she would write one.
But she did. So maybe she isn't a tool of big pharma after all?
Wow. Only up for an hour and a half and already you have critics showing up. Is this a record, Orac?
A bit more on topic, Paul Raeburn sounds like the interviewer in Dara O'Briain's bit:
To be fair, the Callahan and Tsouderos article doesn't do a good job of explaining the difference between "chronic lime disease" and category 4 lime disease. That might have confused some of the critics, who thought they were attacking the idea of category 4 lime disease.
@Alison Cummins
No. You see, this just throws people off the scent. If she writes the occasional piece that casts doubt on a treatment produced by Big PharmaTM, then people will think that she isn't tied to them. And you fell for it. Don't you feel silly now?
Anyone who took Todd W. seriously, raise your tin foil hat!
@Todd,
Keep up exposing that kind of stuff and you will forgo your shill bonus check!
I wasn't "de-legitimizing" him. However, if it bugs you so much, I will change it to say "Paul Raeburn, former senior editor for science at Business Week, former science editor at the Associated Press, author of three science books, director of a university science journalism program."
So, now that I've gotten rid of what appears to be your one and only complaint, can you tell me how I am wrong about the weakness of Raeburn's arguments?
@MikeMa
Well, you see, by pointing out the tactic, I'm throwing doubt on the tactic. I mean, as a true shill, I wouldn't be giving away the real tactics. Man. People falling for stuff left, right and center.
Feels like someone complaining that, in a "balanced" article on the Holocaust, someone interviewed David Irving for the counterpoint and he came over as a lunatic. Sometimes even the best and brightest advocates of an idea don't amount to much.
Before you made this point I'd already forgotten the name "Paul Raeburn." But now its burned into my long-term memory along with the meme, "that science writer who sold out to the pro-laetril/chronic Lyme crowd for some unknown reason."
With friends like you...
BTW, today's xkcd reminded me of Respectful Insolence. You'll like it, Orac :)
http://www.xkcd.com/836/
Now I'm confused. Maryn claims that Orac is "deligitimizing" Raeburn by "suggesting he has no background or standing."
Yet Orac in his article says "One criticism actually appeared in the Knight Science Journalism Tracker's blog in the form of post written by Paul Raeburn, former senior editor for science at Business Week, former science editor at the Associated Press, author of three science books, and director of a university science journalism program".
His background is given due attention - the problem is that he's misrepresenting Tsouderos' article and falsely indicating that there's a serious scientific/medical case for chronic Lyme infection that deserved equal time in Tsouderos' article.
What Maryn's complaint suggests is that she didn't read Orac's article and has no good response to its central points - "chronic Lyme disease" as posited by advocates of long-term antibiotic therapy does not have a factual basis, the therapies given have potential harmful effects, and "equal time" is an irresponsible standard for science reporting when one side represents sound science and the other side is a small minority view riddled with quackery.
Actually, I changed that after Maryn's complaint in order to take away her complaint and force her to focus on substance, rather than superficialities.
Those who call for "balance" are those who would be *excluded* otherwise,while experts-the Orthodoxy"- be they representatives of scientific/medical organizations, governmental agencies, universities, or journals are already compromised by conflicts of interest:indeed they may even challenge the mainstream media itself for similar corporate ties ( Keven Trudeau's Matrix includes all aforementioned as well as the much-maligned Masons).To which I ask: who, pray tell, is left? Some dude on the internet or radio with a match book school degree selling you over-priced supplements? ( No conflicts of interest there.) Woo-meisters warn about the "cult of the expert"- I wonder why?
These people rabbit on about gold standards when looking at chelation procedures but they never talk about gold standards when it comes to denying the vaccine autism link. That is because the best efforts of the multi billion dollar pharmaceutical industry fall desperately short of gold standards. I would say somewhere around the pits would be more apt.
I have a simple gold standard test for any association between vaccines and autism. Does anyone who was never vaccinated become autistic. Answer no. When my claims that there were no unvaccinated autistic people in Britain were put before the Feb 2004 Federal Vaccines Safety conference in Washington, USA by Professor Boyd Haley the British senior person present Mrs Elizabeth Miller of the Dept of Health didn't deny the claim. Instead she attacked my arithmetic. Because there are so few unvaccinated children in the UK it would be hard to find the autistic ones amongst them, she said. Wrong and right! There are upwards of two million unvaccinated children (since 1966) in Britain. And its impossible to find the autistic ones amongst them because they don't exist! It's all in the minutes of that meeting. Unvaccinated equals unautistic!
Tony Bateson, Oxford, UK.
Thanks for this! I was looking for Crislip's piece on this and you gave the link! I sent the Trib article to a friend who is personally involved in this as a caretaker for someone who thinks she has "chronic Lyme disease" and guess what she responded? "Thanks, but I guess we can only say that a lot more science needs to be done". Haven't I heard that one somewhere before?
So, I'll send this column as a follow-up, but I am not certain that reason can prevail. Citing Raeburn's credentials only convinces me that he is a journalist, not a scientist. Journalists need to grasp the concept that the tenets of these two fields collide when the demonstrable facts come into play. The same thing is going on with that book by Devra Davis about cell phones causing cancer. She is touted as a "scientist" because she has some kind of "science studies" (read philosophy of science) degree--from U of Chicago, no less! She is a dedicated New Ager, once you look into it, but I have not seen THAT reported on any of the fluff-piece segments that have been popping up on TV on the subject of her book and cell phones.
Uh, Tony, you need a new shtick. You have been proven wrong so many times it's scary. Amish autistics exist as do many others in unvaccinated pools.
Often this takes the form of a journalistic convention that is more appropriate for politics and other issues but not so appropriate for scientific and medical issues, namely telling both sides as though they have equal or similar weight.
There being "two sides" is never, alone, justification for reporting two sides. IOW, the press gets this wrong at almost every opportunity, including in politics and other areas.
One wonders whether Tony The Liar even bothers to read posts before responding to them with his lies.
For those not familiar, Tony has repeatedly been presented with incontrovertible evidence that unvaccinated autistics exist. He then proceeds to deny that such evidence exists. He is either deliberately lying through his teeth, or grossly delusional, and in either case is unworthy of attention.
Here is a link to a pdf which shows images of biofilms and how they create Chronic recurring infections. Chronic Lyme Disease does exist, and they are hundreds of thousands of people who are the living proof.
http://www.molecularalzheimer.org/files/ Biofilm_New_Haven_ppt_Read-Only_.pdf
http://www.molecularalzheimer.org/files/Biofilm_New_Haven_ppt_Read-Only…
It is incredibly ignorant to say that there is no science to back up the claim of Chronic Lyme disease. Did you do any research at all before you posted or did you just take Trine and Patrica's word for it?
ILADS, International Lyme And Associated Diseases Society, releases statement in response to the Chicago Tribune article on Lyme disease- http://www.ilads.org/news/lyme_news/73.html
From the California Lyme Disease Association in response to the Tribune article-
http://www.lymedisease.org/news/lymepolicywonk/609.html
@21
You've been giving the same old argument for so long, with no proof and no evidence, and yet when given concrete evidence to the contrary, you still keep rehashing the old argument.
And just what does this have to do with "Chronic lyme disease"?
I am one of the unfortunates that has had to suffer through multiple incidents of Lyme Disease - three separate times, at this point, and I'll probably pick it up a few more times in the future (due to my many different outdoor activities, including paintball - which puts me in the vicinity of deer ticks, all the freakin' time).
Each time, I received the recommended course of antibiotics and managed to squelch the infection. I also know of people who had Lyme for years, without realizing it & did progress to the later stages of the disease (and a couple who ultimately died from it). I definitely prefer the hard science to people who "think" something is what it is.
I have a question about Tony Bateson's insistence that there is no autism without vaccination: does it matter which vaccine? Vaccine come in different types, after all, injected, in hales, swallowed, even scratched on. Some are attenuated viruses, some are inactivated, some are just antigens, not even entire bacteria or viruses. Is it his contention that each and every one of these vaccines has precisely the same impact in terms of causing autism?
If so, how does the body distinguish between an antigen introduced via an accidental scratch or puncture, and an antigen deliberately introduced as a vaccine? It would appear to me that it could not, and thus the ordinary injuries of life would prime unvaccinated people for autism as well.
If some vaccines induce autism and others do not, then wouldn't it make more sense for Bateson to focus on which is which?
Nothing matters to Tony Bateson, they could find the definite cause and an infallible cure for autism, and he wouldn't change his mind.
@Mu
Not only that, but he wouldn't even come back here to see any follow-up comments. He's little more than a drive-by troll.
Now I have this image of one of those crazy-haired trolls driving around in a Vauxhall or something.
You didn't find any of the proof of Chornic Lyme or useless blood tests that abounds on pubmed? Ok then, I'll help you out--I know that you trust these authors.
-----------------------------
Luft BJ, Gorevic PD, Halperin JJ, Volkman DJ, Dattwyler RJ. A perspective on the treatment of Lyme borreliosis. Rev Infect Dis. 1989 Sep-Oct;11 Suppl 6:S1518-25.
S1519
Par. 1
âIn the chronic phase of the illness, B. Burgdorferi is more difficult to isolate or identify in affected tissue[â¦] localized inflammatory processes may occur in one or more organ systems[â¦]â
Shadick, Nancy A., Phillips, Charlotte B., Logigian, Eric L. Steere, Allen C., Kaplan, Richard F., Berardi, Victor P., Duray, Paul H., Larson, Martin G. Wright, Elizabeth A.,
Wright, Elizabeth A., Ginsburg. Katherine. S., Katz, Jeffery Z., Liang, Matthew H.
The Long-Term Clinical Outcome of Lyme Disease
A Population-based Retrospective Cohort Study
Annals of Internal Medicine Volume 121, No. 8, (Oct. 15, 1994) pp. 560-567
560
Par. 2
âSome of the late consequences of Lyme disease, such as oligoarticular arthritis, axonal poly- neuropathy, or active encephalopathy, are thought to be caused by persistent spirochetal infection and are amena- ble to antibiotic treatment (6-8).
Par. 4
ââ¦well documented treatment failures have been reportedâ¦Weber et. al. [**37***] reported that 27% of patients with EM develop later neurologic or musculoskeletal manifestations of the infection regardless of whether penicillin, tetracycline, or amoxicillin plus clavulante was used.â
U.S.Patent Appli. No. 11/196,475, Unpublished (filing date August 3, 2005)
(Raymond J. Dattwyler; Maria J.C. Gomes-Solecki; Benjamin J. Luft; Dunn, John. J., applicants)
Description
Background of the Invention
Paragraph 3
"Furthermore, patients acutely and chronically infected with B. burgdorferi respond variably to the different antigens, including OspA, OspB, OspC, OspD, p39, p41 and p93. "
Klempner, Mark S., Norlong, Richard, Rogers, Rick A. Invasion of human Skin Fibroblasts by the Lyme Disease Spirochete, Borrelia Burgdorferi. The Journal of Infectious Diseases Vol. 167, No. 5 (May, 1993) pp.1074-1081
Abstract
âBy scanning electron microscopy, B. burgdorferi
were tightly adherent to fibroblast monolayers after 24-48 h but were eliminated from the cell
surface by treatment with ceftriaxone (1 ag/mL) for 5 days. Despite the absence of visible spiro-
chetes on the cell surface after antibiotic treatment, viable B. burgdorferi were isolated from
lysates of the fibroblast monolayers.â
âThese observations suggest that B. burgdorferi can adhere to,
penetrate, and invade human fibroblasts in organisms that remain viable.â
-----------------------
Here's another helpful hint for you. Don't go kissing anyone with Lyme Disease. Or sharing there food. According to IDSA author Barbour, mammalian saliva is infectious.
Barbour, Alan G.; Hayes, Stanley F. Biology of Borrelia species. Microbiological Reviews. (Dec 1986) Vol. 50, No. 4. P 381-400.
394
Par. 2
âAlthough ingestion of spirochetemic blood by an arthropod
and subsequent passage of the borreliae to another
vertebrate host as outlined above is the usual mode of
transfer between animals, direct vertebrate-to-vertebrate
transmission may also occur. The urine of infected animals
can contain viable borrelia (Bosler and Schulze, in press).
Spirochetes in the urine could enter the host through the
mucous membranes of the conjunctiva, mouth, or nose (73).
Borreliae were demonstrated in the milk, and a small proportion
of guinea pigs that consumed milk of an infected
female became infected themselves (222). The demonstration
that rats and dogs can be infected through the consumption
of infected rat brains or other infected organs (132, 149,
158, 215) suggests that a selective advantage could be
conferred upon those strains that are neurotropic and that
infect rodents practicing some degree of cannibalism. Rat
saliva has been found to be infectious, and transmission
through rat bites has been reported (131). Contact transmission
of B. burgdorferi among laboratory-housed field mice
has been documented, but the route of transmission was not
known (64). â
Just how much should you avoid the fluids of patients with Lyme?
393
Par. 2
âA single borrelia of B. turicatae, B. hermsii, or B. durronii is sufficient to produce infection in laboratory animalsâ¦in susceptible animals, there may be 100,000,000 borreliae per ml of blood during peak spirochetemias.â
Don't trust me, though; lymecryme.com, lymeinfo.net, elencook.org, underourskin.com, undertheeightball.com, and ctlymedisease.org . You may want to hop on over to that last sight and look at the original version of the bug's MSD sheet. (HInt: Laboratory Hazards--"What is wrong with this picture?")
"but not you...not anymore..."
-------------------------------
There's an old adage in medicine. âWhen you hear hoofbeats, think of horses, not zebrasâ. There is one lone exception though, and that of course is lyme disease where the adage seems to be âWhen you hear hoofbeats, think of unicorns, not horsesâ. In the IDSA's Alice-In-Wonderland world of lyme disease, if you are bitten by a tick and get a rash and lyme disease symptoms, and have been treated with 10 days of a mild bacteriostatic agent at some point thereafter whether its the day of the tick bite or years later, you are cured.
Your symptoms that persist and get worse after treatment, even though they are the same symptoms as before treatment, are not due to a pathogen. No, this pleomorphic bacteria that can literally outrun the immune system and whose DNA has been found using PCR after months of antiobiotic treatment can't be causing your symptoms. Instead the IDSA would have us believe its a mysterious and exotic syndrome of unknown etiology, perhaps auto-immune, perhaps psychological, perhaps both, perhaps neither, but in all this uncertainty, they are damn sure of one thing. You don't have lyme disease. How do they know this? They said so, and even though many patients get better after long-term antibiotic treatment (which is extremely risky and dangerous as evidenced by all the acne ridden teenagers dropping like flies), they have a measly 4 very flawed studies with very small sample sizes to trumpet their conclusions, amid the many showing borrelia persistence post-treatment.
So if you get bitten by a tick and the 10 days of doxycycline doesn't kill all the borrelia, babesia, ehrlichia, and/or any of the other myriad of blood borne pathogens ticks carry, think unicorns not horses, and feel fortunate that you are the one lone exception to the old medical adage.
Hmmm. I wondered how long it would be before the Lymies showed up. It actually took them longer than I expected; my Google-Fu must not be as strong as I thought.
Now Tony's just being lazy. At least have the common decency not to cut-and-paste your anti-vaccine ramblings.
Orac, I'd say that 4 1/2 hours is about the going lag time for trolls these days, give or take an hour either way.
The Lymies apparently can't read. The hypothesis that persistent Borelia infection causes chronic Lyme disease has been tested. Antibiotic treatment does absolutely nothing.
Chronicity
Luft BJ, Gorevic PD, Halperin JJ, Volkman DJ, Dattwyler RJ. A perspective on the treatment of Lyme borreliosis. Rev Infect Dis. 1989 Sep-Oct;11 Suppl 6:S1518-25.
S1518
Abstract
â[â¦]there has been no standardization of the methodology for measuring either inhibitory or bactericidal levels. Clinical studies have documented the efficacy of antibiotics, but therapy has failed in as many as 50% of cases of chronic infection.â
Par. 2
âPersistent B. Burgdorferi can produce various insidious and chronic dermatolofic, neurologic, and rheumatologic manifestations[â¦] The pathophysiologic mechanisms involved in the chronic phase of this illness remain incompletely defined.â
S1519
Par. 1
âIn the chronic phase of the illness, B. Burgdorferi is more difficult to isolate or identify in affected tissue[â¦] localized inflammatory processes may occur in one or more organ systems[â¦]â
S1520
Par.1
âThe kinetics of the in vitro killing of B. Burgdorferi are remarkably similar to those for Traponema pallidum [33,34] in that prolongd exposure to antibiotics is necessary for effective killing.â
Par. 2
ââ¦syphilis may also be relevant to Lyme borreliosis [35]. For instance, for eradication of T. pallidum in an animal model, effective levels of penicillin must be maintained[â¦]beaus slowly multiplying organisms may regenerateâ¦â
Par. 3
âIn a randomized, controlled study performed by Steere et. al. [â¦]late complications, such as facial palsies, supraventricular tachycardia, brief episodes of arthritis, fatigue, and lethargy, occurred in 38%-50% of patients irrespective of the treatment regimen. [****2****]â
Par. 4
ââ¦well documented treatment failures have been reportedâ¦Weber et. al. [**37***] reported that 27% of patients with EM develop later neurologic or musculoskeletal manifestations of the infection regardless of whether penicillin, tetracycline, or amoxicillin plus clavulante was used.â
âBerger [***38***] reportedâ¦six of 16 patients who had more severe illness accompanied by EM and who were treated with 250-500 mg of penicillin required retreatment because of persistent illness.
Par. 6
âChronic Lyme disease. B-Lactam antibiotics have been the standard therapy for chronic Lyme borreliosis. High-dose intravenous penicillin has not been universally successful. In Studies by Steere et al.[40] of 43 patients treated with either 3 weeks of benzathine penicillin or 10 days of penicillin G, 35% and 55%, respectively, had complete resolution of their arthritis.â
âThis efficacy [of treatment in neuroborreliosis] may reflect the breakdown of the blood-brain barrier, which allows high, more sustained levels of penicillin with in the CNS. In several reported cases, acute CNS in infection has progressed during penicillin therapyâ¦â
s1521
Par. 1
âMeningopolyradiculitis does not uniformly respond to treatment with penicillinâ¦â
âOf patients with sever neurologic signs, more than 50% will continue to suffer from disability due to this disease for months to years after treatmentâ¦.Similarly, antibiotic treament of acrodermatitis atrophicans produces resolution of skin involvement in only ~50% of patients. In addition, ~50% of these patients continue to have etracutaneous manifestation of Lyme disease after therapy [8]â¦failure rates of >= 50% are being reported in some series for the treatment of chronic rheumatologic, dermatologic, or neurologic disease due to B. Burgdorferi. Clearly, alternative therapies are needed.â
Par. 4
âAdmission criteria were a history of physician-observed EM and/or evidence of a specific immunologic reactivity to B. Burgdorferi and objective evidence of involvement of two or more of the following organ systems: central and peripheral nervous system, cardiovascular system, and musculoskeletal system.â
âAfter therapy, five of the ten patients given penicillin (50%) continued to have recurrent oligoarticular arthritis, fatigue, and memory difficulties.â
âOne patient with complete heart block was treated with penicillin; his conduction abnormality resolved, but he developed arthritis 2 months after completion of therapy. â
ââ¦of the 13 patients randomized to ceftriaxoneâ¦one described ongoing fatigue and memory difficulties and three continued to complain of mild arthralgias.â
Par 5.
âThe ceftriaxone arm of the study was extended to an additional 31 patitnts...Overall, 13% of this group of patients failed to respond to therapy. The rates of response to two doses [per day] of ceftriaxone were similar (~85%).
Par. 6-S1522 Par. 1
âSteere et. al. [2, 50] performed several prospective studiesâ¦in each treatment study, whether it was concerned with early or late disease, a significant number of treatment failures occurred. For example, in the randomized prospective study evaluating the use of penicillin and tetracycline for the treatment of EM, ~50% of the patients given either regimen subsequently developed âminorâ manifestations of disease and several treated with penicillin went on to develop âmajorâ manifestations [2, 51]. For chronic rheumatologic, dermatologic, and neurologic disease, therapy with penicillin has been associated with a failure rate of [>=]50%. Thus, it appears that although tetracyclince and penicillin are clearly efficatious, the are not uniformly effective. Studies for optimization of therapies are certainly warranted.â
Par. 3
ââ¦prolonged exposure (i.e., for as long as 72-96 hours) is necessary for effective killing of B. Burgdorferi [, which] may have important therapeutic implications [32]. Similar kinetics of killing have been noted for T. Pallidum [34,35]; it has been shown in an animal model that T.Pallidum will regrow if penicillin levels are allowed to fall into a subinhibitory range [35]. A similar phenomenon may occur with B. Burgdorferi infection. â
Par. 4
âTreatment failures with tetracycline has been reported [51].â
S1523
Par. 3
Long-term inves-
tigations are needed to determine whether the pa-
tients treated with ceftriaxone remain in remission.
Although ceftriaxone appears to be promising, it is
still associated with a 15?% failure rate [52]. A topic
for further research is whether a more prolonged
course of therapy would be useful in decreasing this
rate of relapse. In addition, the efficacy of various
antimicrobial agents for the treatment of the differ-
ent manifestations of early and chronic Lyme bor-
reliosis must be assessed
U.S.Patent Appli. No. 11/196,475, Unpublished (filing date August 3, 2005)
(Raymond J. Dattwyler; Maria J.C. Gomes-Solecki; Benjamin J. Luft; Dunn, John. J., applicants)
Description
Background of the Invention
Paragraph 3
"Furthermore, patients acutely and chronically infected with B. burgdorferi respond variably to the different antigens, including OspA, OspB, OspC, OspD, p39, p41 and p93. "
Paragraph 5
âCurrently, Lyme Disease is treated with a range of antibiotics, e.g., tetracyclines, penicillin and cephalosporins. However, such treatment is not always successful in clearing the infection. Treatment is often delayed due to improper diagnosis with the deleterious effect that the infection proceeds to a chronic condition, where treatment with antibiotics is often not useful. One of the factors contributing to delayed treatment is the lack of effective diagnostic tools.â
Klempner, Mark S., Norlong, Richard, Rogers, Rick A. Invasion of human Skin Fibroblasts by the Lyme Disease Spirochete, Borrelia Burgdorferi. The Journal of Infectious Diseases Vol. 167, No. 5 (May, 1993) pp.1074-1081
Abstract
âBy scanning electron microscopy, B. burgdorferi
were tightly adherent to fibroblast monolayers after 24-48 h but were eliminated from the cell
surface by treatment with ceftriaxone (1 ag/mL) for 5 days. Despite the absence of visible spiro-
chetes on the cell surface after antibiotic treatment, viable B. burgdorferi were isolated from
lysates of the fibroblast monolayers.â
âThese observations suggest that B. burgdorferi can adhere to,
penetrate, and invade human fibroblasts in organisms that remain viable.â
1074
Par. 2
âDespite an immune response to multiple borrelial anti-
gens, B. burgdorferi can establish a persistent infection in
humans and animals. Organisms have been isolated from
weeks to years after the initial infection from skin [2-5], cere-
brospinal fluid [5, 6], synovial tissue [7], the flexor retinacu-
lum [8], the eye [9], myocardium [10], blood [1 1], and syno-
vial fluid [12, 13].â
This blog post and other protests by non-journalists reminds me of patients going to medical journal sites to protest the scientific method. If you don't like the results, just change the methodology to get what you want.
Likewise, at the Knight Science Journalism Tracker, the most credible and important source of science journalism peer review, not a single journalist agreed that the story in question represented appropriate journalistic practice,or met the standards of good journalism. Not a single classically trained journalist disagreed with Paul Raeburn, the reviewer, who is himself one of the finest and most credentialed science journalists in the United States.
The site was then invaded by voices with knowledge in medicine but zero credentials,training, or experience in journalism, who rushed in to impugn the standards of good journalistic practice endorsed by the journalist peer reviewers, and to insist there was another, better way of doing things: their way, which would rewrite the ethics and guidelines of journalism practice, whole cloth. To wit, these non-journalists feel that they should be enfranchised to peer review journalism along with journalists themselves --and that while they are at it, they should change good journalistic practice to suit themselves.
This is absurd: There is a lot of bad journalism practiced, for instance, the journalism in the Tribune story, but the profession still has standards, still has ethics, still has requirements, for those who care to practice with care.
I don't want to respond much on the science because to me, this is an issue of journalism, pure and simple: Any story done in this fashion, no matter what the topic, would have the same journalistic flaws and would violate the kind of journalistic practice we require at Discover and most other quality national magazines.
However, on the science I will say this: I thought that the recent conference on Lyme and Tick-borne Disease: The State of the Science, organized by the Institute of Medicine, with presenters that included the top experts in the world, gave nuanced insight into the issues these journalists ignored. I wish the Tribune journalists had bothered to watch the webcast, at least, and to quote some of the academic scientists presenting --and that they had enriched their story with the sort of context one gets from a meeting like that.
Pamela Weintraub
Features Editor
Discover Magazine
Chronicity
Luft BJ, Gorevic PD, Halperin JJ, Volkman DJ, Dattwyler RJ. A perspective on the treatment of Lyme borreliosis. Rev Infect Dis. 1989 Sep-Oct;11 Suppl 6:S1518-25.
S1518
Abstract
â[â¦]there has been no standardization of the methodology for measuring either inhibitory or bactericidal levels. Clinical studies have documented the efficacy of antibiotics, but therapy has failed in as many as 50% of cases of chronic infection.â
Par. 2
âPersistent B. Burgdorferi can produce various insidious and chronic dermatolofic, neurologic, and rheumatologic manifestations[â¦] The pathophysiologic mechanisms involved in the chronic phase of this illness remain incompletely defined.â
S1519
Par. 1
âIn the chronic phase of the illness, B. Burgdorferi is more difficult to isolate or identify in affected tissue[â¦] localized inflammatory processes may occur in one or more organ systems[â¦]â
S1520
Par.1
âThe kinetics of the in vitro killing of B. Burgdorferi are remarkably similar to those for Traponema pallidum [33,34] in that prolongd exposure to antibiotics is necessary for effective killing.â
Par. 2
ââ¦syphilis may also be relevant to Lyme borreliosis [35]. For instance, for eradication of T. pallidum in an animal model, effective levels of penicillin must be maintained[â¦]beaus slowly multiplying organisms may regenerateâ¦â
Par. 3
âIn a randomized, controlled study performed by Steere et. al. [â¦]late complications, such as facial palsies, supraventricular tachycardia, brief episodes of arthritis, fatigue, and lethargy, occurred in 38%-50% of patients irrespective of the treatment regimen. [****2****]â
Par. 4
ââ¦well documented treatment failures have been reportedâ¦Weber et. al. [**37***] reported that 27% of patients with EM develop later neurologic or musculoskeletal manifestations of the infection regardless of whether penicillin, tetracycline, or amoxicillin plus clavulante was used.â
âBerger [***38***] reportedâ¦six of 16 patients who had more severe illness accompanied by EM and who were treated with 250-500 mg of penicillin required retreatment because of persistent illness.
Par. 6
âChronic Lyme disease. B-Lactam antibiotics have been the standard therapy for chronic Lyme borreliosis. High-dose intravenous penicillin has not been universally successful. In Studies by Steere et al.[40] of 43 patients treated with either 3 weeks of benzathine penicillin or 10 days of penicillin G, 35% and 55%, respectively, had complete resolution of their arthritis.â
âThis efficacy [of treatment in neuroborreliosis] may reflect the breakdown of the blood-brain barrier, which allows high, more sustained levels of penicillin with in the CNS. In several reported cases, acute CNS in infection has progressed during penicillin therapyâ¦â
s1521
Par. 1
âMeningopolyradiculitis does not uniformly respond to treatment with penicillinâ¦â
âOf patients with sever neurologic signs, more than 50% will continue to suffer from disability due to this disease for months to years after treatmentâ¦.Similarly, antibiotic treament of acrodermatitis atrophicans produces resolution of skin involvement in only ~50% of patients. In addition, ~50% of these patients continue to have etracutaneous manifestation of Lyme disease after therapy [8]â¦failure rates of >= 50% are being reported in some series for the treatment of chronic rheumatologic, dermatologic, or neurologic disease due to B. Burgdorferi. Clearly, alternative therapies are needed.â
Par. 4
âAdmission criteria were a history of physician-observed EM and/or evidence of a specific immunologic reactivity to B. Burgdorferi and objective evidence of involvement of two or more of the following organ systems: central and peripheral nervous system, cardiovascular system, and musculoskeletal system.â
âAfter therapy, five of the ten patients given penicillin (50%) continued to have recurrent oligoarticular arthritis, fatigue, and memory difficulties.â
âOne patient with complete heart block was treated with penicillin; his conduction abnormality resolved, but he developed arthritis 2 months after completion of therapy. â
ââ¦of the 13 patients randomized to ceftriaxoneâ¦one described ongoing fatigue and memory difficulties and three continued to complain of mild arthralgias.â
Par 5.
âThe ceftriaxone arm of the study was extended to an additional 31 patitnts...Overall, 13% of this group of patients failed to respond to therapy. The rates of response to two doses [per day] of ceftriaxone were similar (~85%).
Par. 6-S1522 Par. 1
âSteere et. al. [2, 50] performed several prospective studiesâ¦in each treatment study, whether it was concerned with early or late disease, a significant number of treatment failures occurred. For example, in the randomized prospective study evaluating the use of penicillin and tetracycline for the treatment of EM, ~50% of the patients given either regimen subsequently developed âminorâ manifestations of disease and several treated with penicillin went on to develop âmajorâ manifestations [2, 51]. For chronic rheumatologic, dermatologic, and neurologic disease, therapy with penicillin has been associated with a failure rate of [>=]50%. Thus, it appears that although tetracyclince and penicillin are clearly efficatious, the are not uniformly effective. Studies for optimization of therapies are certainly warranted.â
Par. 3
ââ¦prolonged exposure (i.e., for as long as 72-96 hours) is necessary for effective killing of B. Burgdorferi [, which] may have important therapeutic implications [32]. Similar kinetics of killing have been noted for T. Pallidum [34,35]; it has been shown in an animal model that T.Pallidum will regrow if penicillin levels are allowed to fall into a subinhibitory range [35]. A similar phenomenon may occur with B. Burgdorferi infection. â
Par. 4
âTreatment failures with tetracycline has been reported [51].â
S1523
Par. 3
Long-term inves-
tigations are needed to determine whether the pa-
tients treated with ceftriaxone remain in remission.
Although ceftriaxone appears to be promising, it is
still associated with a 15?% failure rate [52]. A topic
for further research is whether a more prolonged
course of therapy would be useful in decreasing this
rate of relapse. In addition, the efficacy of various
antimicrobial agents for the treatment of the differ-
ent manifestations of early and chronic Lyme bor-
reliosis must be assessed
U.S.Patent Appli. No. 11/196,475, Unpublished (filing date August 3, 2005)
(Raymond J. Dattwyler; Maria J.C. Gomes-Solecki; Benjamin J. Luft; Dunn, John. J., applicants)
Description
Background of the Invention
Paragraph 3
"Furthermore, patients acutely and chronically infected with B. burgdorferi respond variably to the different antigens, including OspA, OspB, OspC, OspD, p39, p41 and p93. "
Paragraph 5
âCurrently, Lyme Disease is treated with a range of antibiotics, e.g., tetracyclines, penicillin and cephalosporins. However, such treatment is not always successful in clearing the infection. Treatment is often delayed due to improper diagnosis with the deleterious effect that the infection proceeds to a chronic condition, where treatment with antibiotics is often not useful. One of the factors contributing to delayed treatment is the lack of effective diagnostic tools.â
Klempner, Mark S., Norlong, Richard, Rogers, Rick A. Invasion of human Skin Fibroblasts by the Lyme Disease Spirochete, Borrelia Burgdorferi. The Journal of Infectious Diseases Vol. 167, No. 5 (May, 1993) pp.1074-1081
Abstract
âBy scanning electron microscopy, B. burgdorferi
were tightly adherent to fibroblast monolayers after 24-48 h but were eliminated from the cell
surface by treatment with ceftriaxone (1 ag/mL) for 5 days. Despite the absence of visible spiro-
chetes on the cell surface after antibiotic treatment, viable B. burgdorferi were isolated from
lysates of the fibroblast monolayers.â
âThese observations suggest that B. burgdorferi can adhere to,
penetrate, and invade human fibroblasts in organisms that remain viable.â
1074
Par. 2
âDespite an immune response to multiple borrelial anti-
gens, B. burgdorferi can establish a persistent infection in
humans and animals. Organisms have been isolated from
weeks to years after the initial infection from skin [2-5], cere-
brospinal fluid [5, 6], synovial tissue [7], the flexor retinacu-
lum [8], the eye [9], myocardium [10], blood [1 1], and syno-
vial fluid [12, 13].â
Steere, AC.; Dressler, F..; Yoshinari, NH. The T-Cell Proliferative Assay in the Diagnosis of Lyme Disease. Ann Intern Med. 1992 Apr 1;116(7):603.
Abtract
Measurements and Main Results
âNineteen of 42 patients with Lyme arthritis or chronic neuroborreliosis and 4 of 77 patients with other diseases had positive T-cell proliferative responses to B. burgdorferi antigens. The sensitivity of the proliferative assay was 45% (95% Cl, 30% to 60%) and the specificity was 95% (95% Cl, 87% to 99%). Twelve of 27 patients with active Lyme arthritis, 7 of 15 patients with chronic neuroborreliosis, 4 of 16 patients with inactive Lyme disease, 4 of 9 healthy Borrelia laboratory workers, and 0 of 9 healthy subjects had positive responses. Three of five patients with Lyme disease who had negative or indeterminant antibody responses by ELISA had positive T-cell proliferative
Steere, Allen C., Schlesinger, Peter A.; Duray, Paul H.; Burke, Barbara A.; Stillman, Thomas. Maternal-Fetal Transmission of the Lyme Disease Spirochete, Borrelia burgdorferi. Annals of Internal Medicine . (July 1, 1985) vol. 103, no.1, p. 67-68.
67
Par. 1
âWe report the case of a woman who developed Lyme disease during the first trimester of pregnancyâ¦Her infant, born at 35 weeks gestational age, died of congenital heart disease during the first week of life. Istologic examination of autopsy material showed the Lyme diseae spirochete in the spleen, kidneys, and bone marrow.â
Par. 8
âThe Lyme disease spirochete may also spread transplacentally to the organs of the fetus.â
68
Par. 1
ââ¦because the fetus is likely to have been infected during cardiovascular organogenesis, a teratogenic effect of the spirochete cannot be excluded.â
Par. 2
âWomen who acquire Lyme disease while pregnant sould be treated promptly with penicillin, or if allergic, erythromycinâ¦At te time of childbirth, the placenta should be examined for histologic abnormalities and for spirochetes, as in congenital syphilis (10.) If the infant is ill, the diagnosis of Lyme disease should be considered.â
This blog and other protests by non-journalists reminds me of patients going to medical journal sites to protest the scientific method. If you don't like the results, just change the methodology to get what you want. Likewise, at the Knight Science Journalism Tracker, the most credible and important source of science journalism peer review, not a single journalist agreed that the story in question represented appropriate journalistic practice, or met the standards of good journalism. Not a single classically trained journalist disagreed with the reviewer, Paul Raeburn, who is himself one of the finest and most credentialed science journalists in the United States.
The site was then invaded by voices with knowledge âand especially, by set positions-- in medicine, but zero credentials,training, or experience in journalism. These people rushed in to a space reserved for journalist peer reviewers, to impugn the standards of good journalistic practice endorsed by the journalist peer reviewers, and to insist there was another, better way of doing things: their way, which would rewrite the ethics and guidelines of journalism practice, whole cloth. To wit, these non-journalists feel that they should be enfranchised to peer review journalism along with journalists themselves --and that while they are at it, they should change good journalistic practice and write new rules to suit themselves. This is not going to happen: There is a lot of bad journalism practiced, for instance, the journalism in the Tribune story, but the profession still has standards, still has ethics, still has requirements, still has a set of guidelines to differentiate good work from bad.
I don't want to respond much on the science because to me, this is an issue of journalism, pure and simple: However, I will say this: I thought that the recent conference on Lyme and Tick-borne Disease: The State of the Science, organized by the Institute of Medicine, with presenters that included the top experts in the world, gave nuanced insight into issues these journalists ignored. I wish the Tribune journalists had bothered to watch the webcast, at least, and to quote some of the academic scientists presenting --and that they had enriched their story with the sort of context one gets from a meeting like that.
Pamela Weintraub
Features Editor
Discover Magazine
"This is absurd: There is a lot of bad journalism practiced, for instance, the journalism in the Tribune story, but the profession still has standards, still has ethics, still has requirements, for those who care to practice with care."
Do those ethics require you to give Holocaust deniers equal voice in all stories dealing with the Holocaust? You will find plenty of 'experts' who will proide you with 'evidence' that, by your standards, would seem to require balanced reporting.
Der Ricther Spricht, we got it the first couple of times. Do you have anything that's peer-reviewed (patent application doesn't count) and less than fifteen years old?
I purposely avoided this example because I knew that if I used it someone, somewhere would claim that I was calling Lyme advocates and those claiming to suffer from CLD Nazis, when I most definitely am not. However, now that someone else has brought it up, I can agree that it is a perfect example to illustrate the principle of false balance. Whenever a journalist writes about the Holocaust, should she be required to interview "experts" on the "other side," for instance countering an interview with noted Holocaust historian Deborah Lipstadt with an interview with Holocaust denier David Irving?
Or, to bring it to science, suppose a journalist is doing a story about a perpetual motion machine, which all of physics tells us to be impossible. Should the journalist feel obligated to interview and "expert" who claims that such a device is possible?
Personally, I think Weintraub is using the "balance" complaint as an intellectually lazy way of not having to think too hard about the issue and make judgments.
In addition to the use of "false balance," another problem with the official journalism formula is the heavy use of anectdotes. Nearly every article (good or bad) starts with an anecdote. This falsely sets up the thesis of the journalist. It also reinforces the popular perception that anecdotes are as good if not better than data. What is the proper use and role of anecdotes in scientific journalism?
Ms. Weintraub,
In your comments here and at the Knight Science Journalism Tracker post you've made several assertions of your expertise in the ethics and quality-control of science journalism, including a necessarily balanced discussion. Instead of diverging into a No True Scotsman/Science Journalist vein of commentary, would you please outline how a journalist is supposed to properly weigh differing opinions, particularly when there is a clear imbalance in the level of support for one claim over another?
----------------------------
Recovery of Lyme spirochetes by PCR in semen samples of previously diagnosed Lyme disease patients
Gregory Bach, DO, International Scientific Conference on Lyme Disease, April 2001
Objective
Lyme disease, being a spirochete with pathology similar to syphilis, is often found difficult to treat due to the spirochete invading sanctuary sites and displaying pleomorphic characteristics such as a cyst (L-form). Because a significant portion of sexually active couples present to my office with Lyme disease, with only one partner having a history of tick exposure, the question of possible secondary (sexual) vector of transmission for the spirochete warrants inquiry. Additionally, sexually active couples seem to have a marked propensity for antibiotic failure raising the question of sexually active couples re-infecting themselves through intimate contact.
Methods
Lyme spirochetes/DNA have been recovered from stored animal semen. Recovery of spirochete DNA from nursing mother's breast milk and umbilical cord blood by PCR (confirmed by culture/microscopy), have been found in samples provided to my office.
Results
Surprisingly, initial laboratory testing of semen samples provided by male Lyme patients (positive by western blot/PCR in blood) and the male sexual partner of a Lyme infected female patient were positive approximately 40% of the time. PCR recovery of Lyme DNA nucleotide sequences with microscopic confirmation of semen samples yielded positive results in 14/32 Lyme patients (13 male semen samples and 1 vaginal pap).
ALL positive semen/vaginal samples in patients with known sexual partners resulted in positive Lyme titers/PCR in their sexual partners. 3/4 positive semen patients had no or unknown sexual partners to be tested.
These preliminary findings warrant further study. Current a statistical design study to evaluate the possibility of sexual transition of the spirochete is being undertaken. Our laboratory studies confirm the existence of Lyme spirochetes in semen/vaginal secretions. Whether or not further clinical studies with a larger statistical group will support the hypothesis of sexual transmission remains to be seen.
A retrospective clinical study is also underway. We are reviewing the medical records, collecting semen samples of patients who were previously diagnosed with current and previously treated Lyme disease are being asked to provide semen,pap and blood samples for extensive laboratory testing.
Conclusion
With the initially impressive data, we feel the subsequent statistical study on the sexual transmission of the Lyme spirochete will illuminate a much broader spectrum of public health concerns associated with the disease than the originally accepted tick borne vector.
-----------------------------------------
So the question now becomes, Orcac et al,
Why do you want your fellow human being--Homo sapiens sapiens-- who has never even heard of you or seen you, let alone tried to rob you of your ability to have a wife, a husband, a child, to wonder why you raised an eye to see, a ear to hear, or a finger to touch the world--
to have an incurable, contagious brain infection?
What joy can you possibly derive when you make a feeling, wondering, laughing, crying, dancing, dreaming person back into an animal or into dirt? Take someone whose only goal may be to better name their world and maybe even repair it a little, or help another human being do so, if they ever try to act on any of these intentions, mutilators, debasers, and even murderers? Is it that you feel a little more like God when you make it so easy for good people to do something so terrible...
@Pamela "...gave nuanced insight into the issues these journalists ignored."
Nuanced insight. *crickets*
There is a reason why scientists rush in to help you journalists with reporting science: we're pretty good at it, we follow a method, we must have a falsifiable hypothesis, and we collect data that either supports or fails to support a hypothesis - we don't prove things.
What you describe as the journalistic MO sounds like a textbook definition of groupthink.
This link says it all. When it comes to the possibility of persistent borrelia burdorferi infection despite seemingly adequate antibiotic therapy, there is a legitimate scientific debate between credible researchers and physicians on both sides.
It would be in your best interest to understand the nuances of the subject as well as all of the studies regarding persistent infection before applying your cynicism.
Link: https://acrobat.com/app.html#d=sbb-EmpQrQTgrPoezLGreg
Pamela Weintraub:
Fair enough -- now, would you mind explaining in what way the Chicago Tribune piece was bad journalism? In your post, you justified your position with nothing more than "a bunch of authorities in journalism agreed it was bad", and then launched into a diatribe about how bloggers aren't proper journalists. Now, most journalists have degrees in communication or English or another topic which will train them how to communicate clearly. I do not see how this diatribe supports your thesis that the Chicago piece was bad journalism. Instead, it seems like a bit of poisoning the well. You don't even explain why THIS blog post is bad, speaking instead in generalities.
So come on -- you see there's a problem. Would you mind pointing it out?
Incidentally, you're an editor for Discover Magazine. While that is a pop magazine, it is a pop *science* magazine, and time was, that meant something. If you think some ill-defined "journalistic ethics" is more important than actual honesty, that may explain why the quality of Discover Magazine has declined so much since I was a subscriber. Time was, journalists investigated and reported on stories. Now, it seems prominent editors will openly castigate (while signing with the name of their employer!) journalists who dare to adhere to the old standards of journalistic ethics.
That's the first time I've heard it claimed that journalistic ethics require the journalist to ignore truth and disregard facts. I was kind of under the impression that accuracy was the central requirement of journalistic ethics. Yet here Pamela is blasting an accurate article, and demanding that it should have included falsehoods in order to be ethical.
Orac, you wrote: "Could it be, perhaps, because there aren't really any legitimate scientific experts who support the idea that long term chronic antibiotics are useful for the entity that is chronic Lyme disease?" As Pamela Weintraub wrote, there certainly are legitimate expert researchers who are looking into that very question, and evidence is mounting in its favor. As to the randomized clinical trials, if you would read them, as I did, you would find that the patient cohort was quite narrow (for one thing, they had already failed the very IV antibiotic treatment for which they were tested), and the findings should not be generalized to the entire Lyme population. The research had to start somewhere, but it is incomplete. I am glad that you recognize that some patients go on to be symptomatic (and with much more than aches, fatigue, and trouble concentrating). Is it damage? auto-immune? co-infections? persistent infection? or a combination of all of these? Let's let the science play out, and in the meantime, let fully-informed patients decide what they need to get their lives back.
More on that "imbalance of evidence:"
Borrelia Burgdorferi --Material Safety Data Sheet. Canadian Office of Biosafety Information edited by the Colorado State University Office of Biosafety; June 16 1998.
Section VI) Laboratory Hazards
âPRIMARY HAZARDS: Accidental parenteral inoculation and exposure to infectious aerosols.â
[Compilerâs note: The implications of this, given that B.b. has been found in urine and that toilets have been shown to produce aerosols , are disturbing.]
Aguero-Rosenfeld, Maria E.; Nowakowski, John; McKenna, Donna F.; Carbonaro, Carol A.;
Wormser, Gary P.
Serodiagnosis in Early Lyme Disease
Journal of Clinical Microbiology, Dec. 1993.
Vol. 31, No. 12
p. 3090-3095
3093
Par. 2
âIn our patient
population, the frequency of prior tick bite (24%)â¦â
Burgess, Elizabeth C.; Amundson, Terry E.; Davis, Jeffrey P.; Edelman, Robert.
Experimental Inoculation of Peromyscus spp. With Borrelia burgdorferi: Evidence of Contact Transmission
Am. J. Trop. Med. Hyg., 35(2), 1986, pp.355-359
[Compilerâs note: While this study is not by any members of the 2006 IDSA guidelines panel, it is included because Burgess, Amundson, and Davis worked at, respectively, UW-Madisonâs School of Veterinary Medicine, Wisconsin DNR, and Wisconsin Division of Public Health at the time they published the study.
Abstract
âTo determine if B. burgdorferi was being transmitted by direct contact, 5 uninfected P. leucopus and 5 uninfected P. maniculatus were caged with 3 B. burgdorferi infected P. leucopus and 3 infected P. maniculatus, respectively. Each ofthese contact-exposed P. leucopus and P. maniculatus developed antibodies to B. burg dorferi, and B. burgdorferi was isolated from the blood of 1contact-exposed P. maniculatus 42 days post-initial contact. These findings show that B. burgdorferi can be transmitted by direct contact without an arthropod vector.â
358
Par. 3
âSince the contact mice had developed antibodies by day 14 and there was no evidence of fighting among the mice it is Un likely that B. burgdorfrri was transmitted via blood.â
âTransmission of other spirochetes by infected animals have been documented to occur through the urine (as with B. recurrentis),'6 or venereally as with T. pallidum.17 Actual infection with spirochetes could occur by the oral route as in B. anserina infection in birds.â
Par. 5
âSpirochete transmission without a tick vector could be an explanation for some human cases of Lyme disease with no known tick exposure.â
Dattwyler, Raymond J.; Volkman, David J.; Luft, Benjamin J.; Halperin, John J.;
Thomas, Josephine; Golightly, Marc. Seronegative Lyme Disease.
N Engl J Med 1988; 319:1441-1446December 1, 1988
Abstract
âThe diagnosis of Lyme disease often depends on the measurement of serum antibodies to Borrelia burgdorferi, the spirochete that causes this disorder. Although prompt treatment with antibiotics may abrogate the antibody response to the infection, symptoms persist in some patients.
We studied 17 patients who had presented with acute Lyme disease and received prompt treatment with oral antibiotics, but in whom chronic Lyme disease subsequently developed. Although these patients had clinically active disease, none had diagnostic levels of antibodies to B. burgdorferi on either a standard enzyme-linked immunosorbent assay or immunofluorescence assay. On Western blot analysis, the level of immunoglobulin reactivity against B. burgdorferi in serum from these patients was no greater than that in serum from normal controls.
The patients had a vigorous T-cell proliferative response to whole B. burgdorferi, with a mean (±SEM) stimulation index of 17.8±3.3, similar to that (15.8±3.2) in 18 patients with chronic Lyme disease who had detectable antibodies. The T-cell response of both groups was greater than that of a control group of healthy subjects (3.1+0.5; P<0.001).
We conclude that the presence of chronic Lyme disease cannot be excluded by the absence of antibodies against B. burgdorferi and that a specific T-cell blastogenic response to B. burgdorferi is evidence of infection in sero-negative patients with clinical indications of chronic Lyme disease.â
US Patent Appl. 10/222,566 (Aug. 13, 2004)
VMP-like sequences of pathogenic borrelia
Noris, Steven J.; Zhang, Jing-Ren; Hardham; John M.; Howell; Jerrilyn K.;
Barbour; Alan G.; Weinstock; George M.
Other References
âPersing et al., "Genetic stability of Borrelia burgdorferi recovered from chronically infected immunocompetent mice," Infect. Immun., 62:3521-3527, 1994.â
âSchutzer et al., "Sequestration of antibody to Borrelia burgdorferi in immune complexes in seronegative Lyme disease," Lancet., 335:312-315, 1990. .
Schwan and Simpson, "Factors influencing the antigenic reactivity of Borrelia burgdorferi the lyme disease spirochete," Scand. J. Infect. Dis., 77:94-101, 1991. .
Schwan et al., "Changes in antigenic reactivity of Borrelia burgdorferi the lyme disease spirochete, during persistent infection in mice," Can. J. Microbiol., 37:450-454, 1991.â
âStevenson et al., "Expression and gene sequence of outer surface protein C of Borrelia burgdorferi reisolated from chronically infected mcie," Infect. Immun., 62:3568-3571, 1994. .â
2.1 Methods of Treatment
âAn important aspect of the invention is the recognition that Borrelia VMP-like sequences recombine at the vls site, with the result that antigenic variation is virtually limitless. Multiclonal populations therefore can exist in an infected patient so that immunological defenses are severely tested if not totally overwhelmed.â
@LW:
This study looks plenty peer-reviewed to me. Steere himself says that it's chronic and they can't test for it. And its publication date should be acceptable to you as well (not that you can actually infer ANYTHING about the validity of an argument or study >>directly < 1 monthâ
Par. 7
âIn summary, PCR testing can detect B. burgdorferi DNA in CSF in some patients with acute or chronic neuroborreliosis. This method represents an advance over culture, which is usu-ally negative in patients with neuroborreliosis. However, for the PCR test to be of routine diagnostic value, greater sensitivity is needed.â
Par. 3
âIn this study, B. burgdorferi DNA was detected in CSF in 3807o of patients with acute neuroborreliosis and 2507o of those with chronic neuroborreliosisâ¦when the results of blinded determinations were analyzed, the PCR results corre-lated with the duration of previous intravenous antibiotic ther-apy, and all control samples were negative. This distribution of results would be unlikely if the samples had been contaminated..â
Par. 4
âWe believe that low numbers or absence of spirochetal plasmids in CSF is a more likely explanation for the insensitivity and limited reproducibility of the CSF assay than contamination of samples during testing.â
More on that "imbalance of evidence:"
Borrelia Burgdorferi --Material Safety Data Sheet. Canadian Office of Biosafety Information edited by the Colorado State University Office of Biosafety; June 16 1998.
Section VI) Laboratory Hazards
âPRIMARY HAZARDS: Accidental parenteral inoculation and exposure to infectious aerosols.â
[Compilerâs note: The implications of this, given that B.b. has been found in urine and that toilets have been shown to produce aerosols , are disturbing.]
Aguero-Rosenfeld, Maria E.; Nowakowski, John; McKenna, Donna F.; Carbonaro, Carol A.;
Wormser, Gary P.
Serodiagnosis in Early Lyme Disease
Journal of Clinical Microbiology, Dec. 1993.
Vol. 31, No. 12
p. 3090-3095
3093
Par. 2
âIn our patient
population, the frequency of prior tick bite (24%)â¦â
Burgess, Elizabeth C.; Amundson, Terry E.; Davis, Jeffrey P.; Edelman, Robert.
Experimental Inoculation of Peromyscus spp. With Borrelia burgdorferi: Evidence of Contact Transmission
Am. J. Trop. Med. Hyg., 35(2), 1986, pp.355-359
[Compilerâs note: While this study is not by any members of the 2006 IDSA guidelines panel, it is included because Burgess, Amundson, and Davis worked at, respectively, UW-Madisonâs School of Veterinary Medicine, Wisconsin DNR, and Wisconsin Division of Public Health at the time they published the study.
Abstract
âTo determine if B. burgdorferi was being transmitted by direct contact, 5 uninfected P. leucopus and 5 uninfected P. maniculatus were caged with 3 B. burgdorferi infected P. leucopus and 3 infected P. maniculatus, respectively. Each ofthese contact-exposed P. leucopus and P. maniculatus developed antibodies to B. burg dorferi, and B. burgdorferi was isolated from the blood of 1contact-exposed P. maniculatus 42 days post-initial contact. These findings show that B. burgdorferi can be transmitted by direct contact without an arthropod vector.â
358
Par. 3
âSince the contact mice had developed antibodies by day 14 and there was no evidence of fighting among the mice it is Un likely that B. burgdorfrri was transmitted via blood.â
âTransmission of other spirochetes by infected animals have been documented to occur through the urine (as with B. recurrentis),'6 or venereally as with T. pallidum.17 Actual infection with spirochetes could occur by the oral route as in B. anserina infection in birds.â
Par. 5
âSpirochete transmission without a tick vector could be an explanation for some human cases of Lyme disease with no known tick exposure.â
Dattwyler, Raymond J.; Volkman, David J.; Luft, Benjamin J.; Halperin, John J.;
Thomas, Josephine; Golightly, Marc. Seronegative Lyme Disease.
N Engl J Med 1988; 319:1441-1446December 1, 1988
Abstract
âThe diagnosis of Lyme disease often depends on the measurement of serum antibodies to Borrelia burgdorferi, the spirochete that causes this disorder. Although prompt treatment with antibiotics may abrogate the antibody response to the infection, symptoms persist in some patients.
We studied 17 patients who had presented with acute Lyme disease and received prompt treatment with oral antibiotics, but in whom chronic Lyme disease subsequently developed. Although these patients had clinically active disease, none had diagnostic levels of antibodies to B. burgdorferi on either a standard enzyme-linked immunosorbent assay or immunofluorescence assay. On Western blot analysis, the level of immunoglobulin reactivity against B. burgdorferi in serum from these patients was no greater than that in serum from normal controls.
The patients had a vigorous T-cell proliferative response to whole B. burgdorferi, with a mean (±SEM) stimulation index of 17.8±3.3, similar to that (15.8±3.2) in 18 patients with chronic Lyme disease who had detectable antibodies. The T-cell response of both groups was greater than that of a control group of healthy subjects (3.1+0.5; P<0.001).
We conclude that the presence of chronic Lyme disease cannot be excluded by the absence of antibodies against B. burgdorferi and that a specific T-cell blastogenic response to B. burgdorferi is evidence of infection in sero-negative patients with clinical indications of chronic Lyme disease.â
US Patent Appl. 10/222,566 (Aug. 13, 2004)
VMP-like sequences of pathogenic borrelia
Noris, Steven J.; Zhang, Jing-Ren; Hardham; John M.; Howell; Jerrilyn K.;
Barbour; Alan G.; Weinstock; George M.
Other References
âPersing et al., "Genetic stability of Borrelia burgdorferi recovered from chronically infected immunocompetent mice," Infect. Immun., 62:3521-3527, 1994.â
âSchutzer et al., "Sequestration of antibody to Borrelia burgdorferi in immune complexes in seronegative Lyme disease," Lancet., 335:312-315, 1990. .
Schwan and Simpson, "Factors influencing the antigenic reactivity of Borrelia burgdorferi the lyme disease spirochete," Scand. J. Infect. Dis., 77:94-101, 1991. .
Schwan et al., "Changes in antigenic reactivity of Borrelia burgdorferi the lyme disease spirochete, during persistent infection in mice," Can. J. Microbiol., 37:450-454, 1991.â
âStevenson et al., "Expression and gene sequence of outer surface protein C of Borrelia burgdorferi reisolated from chronically infected mcie," Infect. Immun., 62:3568-3571, 1994. .â
2.1 Methods of Treatment
âAn important aspect of the invention is the recognition that Borrelia VMP-like sequences recombine at the vls site, with the result that antigenic variation is virtually limitless. Multiclonal populations therefore can exist in an infected patient so that immunological defenses are severely tested if not totally overwhelmed.â
@LW:
This study looks plenty peer-reviewed to me. Steere himself says that it's chronic and they can't test for it. And its publication date should be acceptable to you as well (not that you can actually infer ANYTHING about the validity of an argument or study >>directly < 1 monthâ
Par. 7
âIn summary, PCR testing can detect B. burgdorferi DNA in CSF in some patients with acute or chronic neuroborreliosis. This method represents an advance over culture, which is usu-ally negative in patients with neuroborreliosis. However, for the PCR test to be of routine diagnostic value, greater sensitivity is needed.â
Par. 3
âIn this study, B. burgdorferi DNA was detected in CSF in 3807o of patients with acute neuroborreliosis and 2507o of those with chronic neuroborreliosisâ¦when the results of blinded determinations were analyzed, the PCR results corre-lated with the duration of previous intravenous antibiotic ther-apy, and all control samples were negative. This distribution of results would be unlikely if the samples had been contaminated..â
Par. 4
âWe believe that low numbers or absence of spirochetal plasmids in CSF is a more likely explanation for the insensitivity and limited reproducibility of the CSF assay than contamination of samples during testing.â
The Roanoke Times is doing a three-day article on Lyme
http://www.roanoke.com/
This article is incredible! I wish I saw journalism like this more often!
I've got distant relations with "Chronic Lyme disease" out in Manitoba. It's frustrating. I have so many relations who fall for woo.
Concerned Scientist @4 said
It's not just one TV news channel, it's in the newspapers, the internet news magazines, the glossy news magazines, the fussy household decorating magazines... it's thick as zombies in the mall here in Canada. I've got older family and family friends with MS who are flying to back-alley clinics in Latin America to get this "Liberation treatment" despite my protests that it has scant and highly suspect "evidence" and is linked to a recent spat of deaths.
Health Canada agrees with me. Kiss of death, right there. The Feds agree with me, so of course I must be a Killer Robot Space Jew. Austa la bar mitzvah, baby. Call Dana Scully and Fox Mulder.
I wish I could sit people down with a box set of The X Files and convince them that if what they're being told ever resembles a plot from the show, slow down and quadruple check all the facts, because it's bound to be fiction. Sadly, no dice. I'm not getting anywhere.
More on that "imbalance of evidence:"
Borrelia Burgdorferi --Material Safety Data Sheet. Canadian Office of Biosafety Information edited by the Colorado State University Office of Biosafety; June 16 1998.
Section VI) Laboratory Hazards
âPRIMARY HAZARDS: Accidental parenteral inoculation and exposure to infectious aerosols.â
[Compilerâs note: The implications of this, given that B.b. has been found in urine and that toilets have been shown to produce aerosols , are disturbing.]
Aguero-Rosenfeld, Maria E.; Nowakowski, John; McKenna, Donna F.; Carbonaro, Carol A.;
Wormser, Gary P.
Serodiagnosis in Early Lyme Disease
Journal of Clinical Microbiology, Dec. 1993.
Vol. 31, No. 12
p. 3090-3095
3093
Par. 2
âIn our patient
population, the frequency of prior tick bite (24%)â¦â
Burgess, Elizabeth C.; Amundson, Terry E.; Davis, Jeffrey P.; Edelman, Robert.
Experimental Inoculation of Peromyscus spp. With Borrelia burgdorferi: Evidence of Contact Transmission
Am. J. Trop. Med. Hyg., 35(2), 1986, pp.355-359
[Compilerâs note: While this study is not by any members of the 2006 IDSA guidelines panel, it is included because Burgess, Amundson, and Davis worked at, respectively, UW-Madisonâs School of Veterinary Medicine, Wisconsin DNR, and Wisconsin Division of Public Health at the time they published the study.
Abstract
âTo determine if B. burgdorferi was being transmitted by direct contact, 5 uninfected P. leucopus and 5 uninfected P. maniculatus were caged with 3 B. burgdorferi infected P. leucopus and 3 infected P. maniculatus, respectively. Each ofthese contact-exposed P. leucopus and P. maniculatus developed antibodies to B. burg dorferi, and B. burgdorferi was isolated from the blood of 1contact-exposed P. maniculatus 42 days post-initial contact. These findings show that B. burgdorferi can be transmitted by direct contact without an arthropod vector.â
358
Par. 3
âSince the contact mice had developed antibodies by day 14 and there was no evidence of fighting among the mice it is Un likely that B. burgdorfrri was transmitted via blood.â
âTransmission of other spirochetes by infected animals have been documented to occur through the urine (as with B. recurrentis),'6 or venereally as with T. pallidum.17 Actual infection with spirochetes could occur by the oral route as in B. anserina infection in birds.â
Par. 5
âSpirochete transmission without a tick vector could be an explanation for some human cases of Lyme disease with no known tick exposure.â
Dattwyler, Raymond J.; Volkman, David J.; Luft, Benjamin J.; Halperin, John J.;
Thomas, Josephine; Golightly, Marc. Seronegative Lyme Disease.
N Engl J Med 1988; 319:1441-1446December 1, 1988
Abstract
âThe diagnosis of Lyme disease often depends on the measurement of serum antibodies to Borrelia burgdorferi, the spirochete that causes this disorder. Although prompt treatment with antibiotics may abrogate the antibody response to the infection, symptoms persist in some patients.
We studied 17 patients who had presented with acute Lyme disease and received prompt treatment with oral antibiotics, but in whom chronic Lyme disease subsequently developed. Although these patients had clinically active disease, none had diagnostic levels of antibodies to B. burgdorferi on either a standard enzyme-linked immunosorbent assay or immunofluorescence assay. On Western blot analysis, the level of immunoglobulin reactivity against B. burgdorferi in serum from these patients was no greater than that in serum from normal controls.
The patients had a vigorous T-cell proliferative response to whole B. burgdorferi, with a mean (±SEM) stimulation index of 17.8±3.3, similar to that (15.8±3.2) in 18 patients with chronic Lyme disease who had detectable antibodies. The T-cell response of both groups was greater than that of a control group of healthy subjects (3.1+0.5; P<0.001).
We conclude that the presence of chronic Lyme disease cannot be excluded by the absence of antibodies against B. burgdorferi and that a specific T-cell blastogenic response to B. burgdorferi is evidence of infection in sero-negative patients with clinical indications of chronic Lyme disease.â
US Patent Appl. 10/222,566 (Aug. 13, 2004)
VMP-like sequences of pathogenic borrelia
Noris, Steven J.; Zhang, Jing-Ren; Hardham; John M.; Howell; Jerrilyn K.;
Barbour; Alan G.; Weinstock; George M.
Other References
âPersing et al., "Genetic stability of Borrelia burgdorferi recovered from chronically infected immunocompetent mice," Infect. Immun., 62:3521-3527, 1994.â
âSchutzer et al., "Sequestration of antibody to Borrelia burgdorferi in immune complexes in seronegative Lyme disease," Lancet., 335:312-315, 1990. .
Schwan and Simpson, "Factors influencing the antigenic reactivity of Borrelia burgdorferi the lyme disease spirochete," Scand. J. Infect. Dis., 77:94-101, 1991. .
Schwan et al., "Changes in antigenic reactivity of Borrelia burgdorferi the lyme disease spirochete, during persistent infection in mice," Can. J. Microbiol., 37:450-454, 1991.â
âStevenson et al., "Expression and gene sequence of outer surface protein C of Borrelia burgdorferi reisolated from chronically infected mcie," Infect. Immun., 62:3568-3571, 1994. .â
2.1 Methods of Treatment
âAn important aspect of the invention is the recognition that Borrelia VMP-like sequences recombine at the vls site, with the result that antigenic variation is virtually limitless. Multiclonal populations therefore can exist in an infected patient so that immunological defenses are severely tested if not totally overwhelmed.â
@LW:
This study looks plenty peer-reviewed to me. Steere himself says that it's chronic and they can't test for it. And its publication date should be acceptable to you as well (not that you can actually infer ANYTHING about the validity of an argument or study >>directly < 1 monthâ
Par. 7
âIn summary, PCR testing can detect B. burgdorferi DNA in CSF in some patients with acute or chronic neuroborreliosis. This method represents an advance over culture, which is usu-ally negative in patients with neuroborreliosis. However, for the PCR test to be of routine diagnostic value, greater sensitivity is needed.â
Par. 3
âIn this study, B. burgdorferi DNA was detected in CSF in 3807o of patients with acute neuroborreliosis and 2507o of those with chronic neuroborreliosisâ¦when the results of blinded determinations were analyzed, the PCR results corre-lated with the duration of previous intravenous antibiotic ther-apy, and all control samples were negative. This distribution of results would be unlikely if the samples had been contaminated..â
Par. 4
âWe believe that low numbers or absence of spirochetal plasmids in CSF is a more likely explanation for the insensitivity and limited reproducibility of the CSF assay than contamination of samples during testing.â
What an amazing, wonderful world it is when "fringe lunatic quack idiots" are your biggest thread. What a truly wonderful world.
Re your comment, I work with many scientists, in fact many of the greatest in the world, and have for decades. I don't think anyone could accuse me of being an intellectually lazy journalist. In my opinion the story was a poor job of journalism because it painted a broad, black-and-white picture when the reality of the situation is complex --it missed the real story for its own hype, and did so by putting forth great opinion but little data. For all the reasons Raeburn pointed out, I feel this was a broad, sloppy, heavy-handed job that did not meet the journalistic standard to which I have been trained and that we hold to at Discover If you think this story represents a thoughtful, intellectual tour de force, or that it is appropriately balanced --or that it represents good or great journalism, well, what can I say? You may be a doctor, but you are not an expert on Lyme disease --and you certainly are no expert on journalism. Sometimes people must agree to disagree, and I certainly disagree with you.
Psm Weintraub,
Features Editor
Discover
More on that "imbalance of evidence:"
Borrelia Burgdorferi --Material Safety Data Sheet. Canadian Office of Biosafety Information edited by the Colorado State University Office of Biosafety; June 16 1998.
Section VI) Laboratory Hazards
âPRIMARY HAZARDS: Accidental parenteral inoculation and exposure to infectious aerosols.â
[Compilerâs note: The implications of this, given that B.b. has been found in urine and that toilets have been shown to produce aerosols , are disturbing.]
Aguero-Rosenfeld, Maria E.; Nowakowski, John; McKenna, Donna F.; Carbonaro, Carol A.;
Wormser, Gary P.
Serodiagnosis in Early Lyme Disease
Journal of Clinical Microbiology, Dec. 1993.
Vol. 31, No. 12
p. 3090-3095
3093
Par. 2
âIn our patient
population, the frequency of prior tick bite (24%)â¦â
Burgess, Elizabeth C.; Amundson, Terry E.; Davis, Jeffrey P.; Edelman, Robert.
Experimental Inoculation of Peromyscus spp. With Borrelia burgdorferi: Evidence of Contact Transmission
Am. J. Trop. Med. Hyg., 35(2), 1986, pp.355-359
[Compilerâs note: While this study is not by any members of the 2006 IDSA guidelines panel, it is included because Burgess, Amundson, and Davis worked at, respectively, UW-Madisonâs School of Veterinary Medicine, Wisconsin DNR, and Wisconsin Division of Public Health at the time they published the study.
Abstract
âTo determine if B. burgdorferi was being transmitted by direct contact, 5 uninfected P. leucopus and 5 uninfected P. maniculatus were caged with 3 B. burgdorferi infected P. leucopus and 3 infected P. maniculatus, respectively. Each ofthese contact-exposed P. leucopus and P. maniculatus developed antibodies to B. burg dorferi, and B. burgdorferi was isolated from the blood of 1contact-exposed P. maniculatus 42 days post-initial contact. These findings show that B. burgdorferi can be transmitted by direct contact without an arthropod vector.â
358
Par. 3
âSince the contact mice had developed antibodies by day 14 and there was no evidence of fighting among the mice it is Un likely that B. burgdorfrri was transmitted via blood.â
âTransmission of other spirochetes by infected animals have been documented to occur through the urine (as with B. recurrentis),'6 or venereally as with T. pallidum.17 Actual infection with spirochetes could occur by the oral route as in B. anserina infection in birds.â
Par. 5
âSpirochete transmission without a tick vector could be an explanation for some human cases of Lyme disease with no known tick exposure.â
Dattwyler, Raymond J.; Volkman, David J.; Luft, Benjamin J.; Halperin, John J.;
Thomas, Josephine; Golightly, Marc. Seronegative Lyme Disease.
N Engl J Med 1988; 319:1441-1446December 1, 1988
Abstract
âThe diagnosis of Lyme disease often depends on the measurement of serum antibodies to Borrelia burgdorferi, the spirochete that causes this disorder. Although prompt treatment with antibiotics may abrogate the antibody response to the infection, symptoms persist in some patients.
We studied 17 patients who had presented with acute Lyme disease and received prompt treatment with oral antibiotics, but in whom chronic Lyme disease subsequently developed. Although these patients had clinically active disease, none had diagnostic levels of antibodies to B. burgdorferi on either a standard enzyme-linked immunosorbent assay or immunofluorescence assay. On Western blot analysis, the level of immunoglobulin reactivity against B. burgdorferi in serum from these patients was no greater than that in serum from normal controls.
The patients had a vigorous T-cell proliferative response to whole B. burgdorferi, with a mean (±SEM) stimulation index of 17.8±3.3, similar to that (15.8±3.2) in 18 patients with chronic Lyme disease who had detectable antibodies. The T-cell response of both groups was greater than that of a control group of healthy subjects (3.1+0.5; P<0.001).
We conclude that the presence of chronic Lyme disease cannot be excluded by the absence of antibodies against B. burgdorferi and that a specific T-cell blastogenic response to B. burgdorferi is evidence of infection in sero-negative patients with clinical indications of chronic Lyme disease.â
US Patent Appl. 10/222,566 (Aug. 13, 2004)
VMP-like sequences of pathogenic borrelia
Noris, Steven J.; Zhang, Jing-Ren; Hardham; John M.; Howell; Jerrilyn K.;
Barbour; Alan G.; Weinstock; George M.
Other References
âPersing et al., "Genetic stability of Borrelia burgdorferi recovered from chronically infected immunocompetent mice," Infect. Immun., 62:3521-3527, 1994.â
âSchutzer et al., "Sequestration of antibody to Borrelia burgdorferi in immune complexes in seronegative Lyme disease," Lancet., 335:312-315, 1990. .
Schwan and Simpson, "Factors influencing the antigenic reactivity of Borrelia burgdorferi the lyme disease spirochete," Scand. J. Infect. Dis., 77:94-101, 1991. .
Schwan et al., "Changes in antigenic reactivity of Borrelia burgdorferi the lyme disease spirochete, during persistent infection in mice," Can. J. Microbiol., 37:450-454, 1991.â
âStevenson et al., "Expression and gene sequence of outer surface protein C of Borrelia burgdorferi reisolated from chronically infected mcie," Infect. Immun., 62:3568-3571, 1994. .â
2.1 Methods of Treatment
âAn important aspect of the invention is the recognition that Borrelia VMP-like sequences recombine at the vls site, with the result that antigenic variation is virtually limitless. Multiclonal populations therefore can exist in an infected patient so that immunological defenses are severely tested if not totally overwhelmed.â
@LW:
This study looks plenty peer-reviewed to me. Steere himself says that it's chronic and they can't test for it. And its publication date should be acceptable to you as well (not that you can actually infer ANYTHING about the validity of an argument or study >>directly < 1 monthâ
Par. 7
âIn summary, PCR testing can detect B. burgdorferi DNA in CSF in some patients with acute or chronic neuroborreliosis. This method represents an advance over culture, which is usu-ally negative in patients with neuroborreliosis. However, for the PCR test to be of routine diagnostic value, greater sensitivity is needed.â
Par. 3
âIn this study, B. burgdorferi DNA was detected in CSF in 3807o of patients with acute neuroborreliosis and 2507o of those with chronic neuroborreliosisâ¦when the results of blinded determinations were analyzed, the PCR results corre-lated with the duration of previous intravenous antibiotic ther-apy, and all control samples were negative. This distribution of results would be unlikely if the samples had been contaminated..â
Par. 4
âWe believe that low numbers or absence of spirochetal plasmids in CSF is a more likely explanation for the insensitivity and limited reproducibility of the CSF assay than contamination of samples during testing.â
@pweintraub
Ms. Weintraub, I'm curious about your response to Roadstergal's comment at #42 and Orac's at comment #44. What are your thoughts?
Re your comment, I work with many scientists, in fact many of the greatest in the world. I don't think anyone could accuse me of being an intellectually lazy journalist. In my opinion the story you are boosting paints a broad, black and white picture with little real reporting and an abundance of opinion, tripping over its own, overblown hype. There isnât a doctor in the world who could tell me this is good reporting. It violates the journalistic standard, and by touting this as an example of what we should strive for, you are trying to reinvent journalism as invective, as screed. Do you really think I would take journalistic advice from a doctor who tells me to do journalism like this? I donât think weâll be doing it your way at Discover Mag any time soon. But good luck with it âat least you have your own blog.
Pam Weintraub,
Features Editor
Discover
Ms. Weintraub, science main purpose is to paint things black and white, that is, get a definite answer to a question. While there might be a gray area of "what causes CDL syndrom", there's no gray left in the question of "does long term antibiotics do any good". The question has been answered. No amount of "it's journalism, not science" gets you around that.
False Equivalence
The qualifications for a journalist are much lower than the qualifications of a scientist. Scientists like Ed Yong can do journalism a lot better than journalists can do science.
This may be confirmation bias, but it seems that every time a read a new story that covers a field where I have any expertise, they get stuff wrong.
Ms Weintraub is also making the unwarranted assumption that "appropriate journalistic practice" is good journalistic practice. We need only to look at how the petroleum industry has managed to confuse the public with regard to AGW by gaming the system of "appropriate journalistic practice" to see how broken the current journalistic practice is.
Instead of using Holocaust denial as example, I wonder if a sports reporter is supposed to interview a drunk Riders fan staggering out of the stadium who thinks Saskatchewan won the 2010 Grey Cup (Canadian Football Championship) in order to provide journalistic balance. After all, I am sure there are plenty of people in Africa wearing Saskatchewan Roughriders 2010 CFL Champions T-Shirts
Bullshit - I can think of at least one. Hint - he is a surgeon specializing in breast cancer and a research oncologist. Care to try anymore demonstrably false statements.
Yikes, always knew Chronic Lyme disease was complete woo. It's called an anxiety disorder, get your meds. Even acute Lyme disease is looking to be a bit far fetched, now I am far from an expert but it seems a little bit out of a sci fi novel for a tick to harbor some strange virus, who proved this and what experimental data did they have? What were the experiments that prove that some tick borned virus is the cause of a human disease in the first place?
@pweintraub,
RE: "I don't think anyone could accuse me of being an intellectually lazy journalist."
This looks like lazy commenting and writing.
Perhaps you'd like to rephrase that to "I don't think anyone would be justified in accusing me of being an intellectually lazy journalist.", since you were responding to just such an accusation.
Obviously someone could accuse you of being intellectually lazy because someone just did so.
RE: "There isnât a doctor in the world who could tell me this is good reporting"
Again, your journalistic writing skills fail you. You are responding to a blog post in which an MD/PhD (A surgical oncologist and research scientist- a double doctor) has said exactly that.
Such demonstrably false hyperbole does not demonstrate your writing skills as a journalist to any good effect. If your comments here are any indication of the skill with which you construct and edit news features, I would suggest that the intellectually lazy label seems appropriate.
Pamela Weintraub said: "Not a single classically trained journalist disagreed with the reviewer, Paul Raeburn, who is himself one of the finest and most credentialed science journalists in the United States.
The site was then invaded by voices with knowledge âand especially, by set positions-- in medicine, but zero credentials,training, or experience in journalism. These people rushed in to a space reserved for journalist peer reviewers, to impugn the standards of good journalistic practice endorsed by the journalist peer reviewers"
The very idea! People who aren't "trained" and "credentialed"* journalists "invading" a forum to give opinions on what constitutes good journalism?!
Ms. Weintraub's high dudgeon at these acts of lese majeste reminds me of instances where physicians have been offended that non-M.D.s dare to challenge their ideas or competency, and are rightly ridiculed in news stories. The difference here, of course, is that medicine is a specialized field requiring a great deal of training, board certification and continuing education, while journalism...hmmm, I don't recall there being any similar standards required for reporters. Nor should there necessarily be. Having a journalism degree does not equate to having the necessary skills to be a good reporter.
I admire Ms. Tsouderos' reporting, in particular her avoidance of the box that lazy reporters fall into, of treating stories like the vaccine manufactroversy and "chronic Lyme disease" as a battle between the cold ivory tower physicians and the brave but misunderstood patient advocates - and giving "equal time" to both a scientist who's devoted his/her career to the field and some pressure group spokesperson who cherry-picks their "knowledge" from Google searches. "Expert" is not a dirty word in Ms. Tsouderos' reporting.
For Ms. Weintraub's benefit, my perspective on this is based on experience both as a physician and a working reporter whose beat included science and medical issues.
Although theoriginalihaveaches didn't mean it this way, it seems to me that that comment points up why long term antibiotic use in this case is a bad idea.
Suppose that Lyme disease *can* be sexually transmitted. Suppose further that A gets infected and passes the disease to B before getting treated. B perhaps has a milder case that goes unrecognized, so B isn't treated and reinfects A. As a result, A keeps developing symptoms, is diagnosed with chronic Lyme disease, and is put on long term antibiotics. Doesn't that set up both A and B for antibiotic-resistant Lyme disease? Not to say that Lyme disease is in fact sexually transmitted -- I wouldn't know that -- but that this is a logical possibility.
theoriginalihaveaches accuses Orac and others here of wanting to hurt people and cause them to suffer an incurable brain infection, but that's precisely what Orac and others *don't* want, and that why they call for research instead of jumping to conclusions.
pweintraub,
Be that as it may, both of your posts here have been intellectually lazy; you've stated many assertions and opinions but given not a single bit of evidence to back them up. If the "journalistic standard" today is to forgo supporting one's arguments, then no wonder the quality of science journalism is so bad.
But the scientific method has been repeatedly tested and it works. The Journalism that you are advocating has repeatedly failed. It fails with evolution, it fails with global warming, it fails with the vaccine-autism crankery, it failed with "cold-eaze", ....
Your method is broken and needs to be fixed. Interviewing "experts" and quoting all of them in a way that gives the impression that their views are equally valid is simply nonsensical.
Speaking of lazy commenting, this probably wasn't an optimal turn of phrase: "The site was then invaded by voices with knowledge â". I paused at the break to savor the image of Ms. Weintraub and her colleagues aghast at the people with actual *knowledge* invading their knowledge-free demesne. Man the barricades!
The rest of the comment didn't do much to dispel that image, either.
I assume pweintraub is a genuine editor at Discover and not a troll. If so, I think she would be best served by reviewing the principles of logical fallacy. There are about a half-dozen I count in her two posts. If I were executive editor of Discover magazines, I would be humiliated to have a senior editor at my science publication wandering around the internet posting with ignorance of these obvious fallacies.
As others have pointed out, her favorite crutch appears to be Argument From Authority with no coherent arguments as to why a marginal and unproven (and apparently disproved) medical theory deserves any kind of serious recognition in quality science journalism.
I suspect pweintraub is a troll, I would expect no one with any serious experience with writing could muster such drop dead stupid phrases as "Not a single classically trained journalist disagreed with the reviewer" and "The site was then invaded by voices with knowledge "
@LW
Given what is known about Relapsing Fevers (Borrelioses)--that circulating spirochete levels can again become quite after their post-acute stage dropoff (there is even documentation of Bb in the urine of asymptomatic horses), that even during treatment, "survival forms" of the organism lacking cell walls persist in the circulation-- the infected at this point need to proceed as if they will >>always<< be infectious until research proves otherwise or the cure is found. The risks of not doing so are simply too profound.
(
http://docs.google.com/viewer?a=v&q=cache:JhhFVGoDt7MJ:www.stcatherines…)
(http://www.jvdi.org/cgi/reprint/10/2/196.pdf)
(http://www.lymecryme.com/Japans_Secret.pdf--READ THIS EVERYONE. It is a WWII-era primary source discussing at length the above-mentioned filtrable "survival" forms and their significance in efforts stretching to create--!Weaponized Borrelia!--and sheds much light on the true nature of the coverup of Chronic Lyme. If you're really feeling intrepid, check out filedropper.com/lymeshow for a download of a radio show that was just done on Lyme, Gulf War Illness, and the assassinations of 99 microbiologists since 9/11. Also elenacook.org)
Re-the issue of "antibiotic-resistant Lyme:"
The research on this is extremely limited, and what I've been able to find has all been about in vitro phenomena.
What we do know, though, is that persistence via intracellular sequestration, encystment, biofilm formation, antigenic variation--mechanisms that have nothing to do with classical "antibiotic resistance"--have been proven, and that that the resistance you speak of is thus, if anything, simply a necessary risk (which, incidently, lyme-treating clinicians are finding ways to minimize with multi-drug therapy.)One never, hears, for instance, of withholding treatment from leprosy patients, who the WHO recommends be treated for up to 2 years, because they might develop a resistant strain.
(http://aac.asm.org/cgi/content/abstract/54/2/643)
Your argument about what it being an STD implies re: treatment doensn't make sense to me. The possibliltiy of reinfection that you speak of would imply that it's curable (which we know it's not) and thus preclude the possibility of any resistance; in the case of each of A's infections, once A had been treated and recovered, there'd be nothing there to become resistant. The infection A had given to B before treatment and then gotten back couldn't be resistant, as B'd have received no treatment, and A and B could just take the initial treatment A'd received.
Even this is academic, though, as it depends on the assumption that Lyme is curable, which we know that, once it is disemminated, it is not. Furthermore, given what is known about Syphilis and Leptospirosis, it seems likely that if anything, long-term treatmend would reduce to potential for transmission.
(http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&T…)
Human-human transmission possibilites should be the #1 thing being studied now. As the infective dose can be 1 germ, at least when its put right into the blood (though it can also be as high as many millions, depending on many different factors), and spirochetes in all forms are filtrable (a google search for filtrable treponema tells you much abuot this--the granule can be .1 microns across, which is also the diameter of the spiral form), condoms, while obviously indescribably better than nothing, may not always stop it.
(http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1044897/)
(http://www.ncbi.nlm.nih.gov/pubmed/1411838)
"Waiting for more research" while people are dying from a proven infection and none of said "research" has really been done in the 30 years the disease has been epidemic is simply not an option. We have to do all we can now.
Yay...Teach the Controversy(TM)Pam Weintraub!
Your "report the balance" journalistic ethics and guidelines will greatly aid in paving the way for ID and Pastafarianism being taught as science.
RAmen
Wait...it appears a lot of the "Evolution/ID "Controversy" articles at Discover are biased toward "logical conjecture based on overwhelming observable evidence" of evolutionary theory! What's up with that?
What happened to reporting the balance? Where are those "journalistic ethics and guidelines"?
We have experts too you know!
the first paragraph of that in its entirety:
Given what is known about Relapsing Fevers (Borrelioses)--that circulating spirochete levels can again become quite after their post-acute stage dropoff (there is even documentation of Bb in the urine of asymptomatic horses), that even during treatment, "survival forms" of the organism lacking cell walls persist in the circulation-- the infected at this point need to proceed as if they will >>always<< be capable of passing it. The risks of not doing so are simply too profound.
theoriginalihaveaches, could you please just post a link to the source where you're getting your cut-and-paste? I'm sure the original is much more readably formatted, and probably doesn't have random jumps in the middle.
Likewise, at the Knight Science Journalism Tracker, the most credible and important source of science journalism peer review, not a single journalist agreed that the story in question represented appropriate journalistic practice,or met the standards of good journalism. Not a single classically trained journalist disagreed with Paul Raeburn, the reviewer, who is himself one of the finest and most credentialed science journalists in the United States.
If true, that that is quite an indictment of the entire profession of science journalism, although it is certainly concordant with the views of most scientists I know--that science journalism is mostly done by people who are at best marginally literate when it comes to science, who gravitated to "science journalism" because they lacked the competence to do actual science or actual journalism, and who have not the faintest idea of how to properly evaluate scientific evidence.
Concerned Scientist #4,
The CCSVI treatment popped up on my radar unexpectedly: a radiology attending at UAB was raving about their programs's "success rate" in this procedure. Since I was unfortunately interviewing for said program, I kept my mouth shut. I also have not done more than cursorily read the evidence before/against but am suspicious of any mechanism for ameliorating MS that involves vein manipulation (it sounds plausible on the surface, but it still smells funny to me). Thanks for reminding me it's time to poke around.
It's a shame that enthusiasm is coloring my opinion of the program. I am fairly sure they are in it for the high monetary reimbursement as an IR procedure rather than as true believers, but it did count as a negative in an otherwise excellent training program...much like the preliminary training program that dropped to the bottom of my rank list due to the way every attending and resident present showed off its brand-new "amazing" integrative medicine center.
You mean the studies from the IDSA authors?
That's all archived at lymecryme.com --mostly in the "treatment failure in their own words"---"or available through pubmed or, I think, JSTOR.
Will do this at some point later when I have time, as it's a lot to go hunt down.
here's the source for std info.
www.anapsid.org/lyme/bach.html
and here are the article names, in case you want to go look these up in the mean time:
Luft BJ, Gorevic PD, Halperin JJ, Volkman DJ, Dattwyler RJ. A perspective on the treatment of Lyme borreliosis. Rev Infect Dis. 1989 Sep-Oct;11 Suppl 6:S1518-25.
Benach, J. L. and Garcia Monco, J. C. Aspects of the Pathogenesis of Neuroborreliosis
U.S.Patent Appli. No. 11/196,475, Unpublished (filing date August 3, 2005)
(Raymond J. Dattwyler; Maria J.C. Gomes-Solecki; Benjamin J. Luft; Dunn, John. J., applicants)
Klempner, Mark S., Norlong, Richard, Rogers, Rick A. Invasion of human Skin Fibroblasts by the Lyme Disease Spirochete, Borrelia Burgdorferi. The Journal of Infectious Diseases Vol. 167, No. 5 (May, 1993) pp.1074-1081
Nocton, James J., Bloom, Bradley J., Rutledge, Barbara J.,, Persing, David H., Logigian, Eric L., Schmid, Chritopher H., Steere, Allen C. Detection of Borrelia burgdorferi DNA by Polymerase Chain Reaction in Lyme Neuroborreliosis
The Journal of Infectious Disease Vol. 174 No. 3 (Sep .1996) pp 623-627
Shadick, Nancy A., Phillips, Charlotte B., Logigian, Eric L. Steere, Allen C., Kaplan, Richard F., Berardi, Victor P., Duray, Paul H., Larson, Martin G. Wright, Elizabeth A.,
Wright, Elizabeth A., Ginsburg. Katherine. S., Katz, Jeffery Z., Liang, Matthew H.
The Long-Term Clinical Outcome of Lyme Disease
A Population-based Retrospective Cohort Study
Annals of Internal Medicine Volume 121, No. 8, (Oct. 15, 1994) pp. 560-567
Klempner, Mark S; Peacocke, Monica; Georgilis, Kostis. Fibroblasts protect the Lyme Diseae Spirochte,, Borrelia burgdorferi, from Ceftrizxone in Vitro.. The Journal of Infectious Disease 1992;144;440-4
Barbour, Alan G.; Karagis, Robert J.; Dever, Lisa L.; Jorgensen, James H. InVivo Activies of Ceftriaxone and Vancomycin against Borreia spp. In the Mouse Brain and Other Sites. Antimicrobial Agents and Chemotherapy (Nov. 1996,) p. 2632-2636
Barbour, Alan G.; Hayes, Stanley F. Biology of Borrelia species. Microbiological Reviews. (Dec 1986) Vol. 50, No. 4. P 381-400.
Open Meeting of: The Vaccines and Related Biologics Products Advisory Committee. Food and Drug Administration. June 7, 1994.
Aguero-Rosenfeld, Maria E.; Nowakowski, John; McKenna, Donna F.; Carbonaro, Carol A.;
Wormser, Gary P.
Serodiagnosis in Early Lyme Disease
Journal of Clinical Microbiology, Dec. 1993.
p. 3090-3095
Barbour, Alan G.; Blank, Eric; Dattwyler; Raymond J.; Hanson, Sharon
Johnson, Russell C.; Lambert, Frank W.; Martin, Robert; Ryan, Raymond W.;
McSweegan, Edward; Schwan, Thomas; Steece, Richard; Steere, Allen; Temperi ,Ralph J.; Weinstein, Arthur. Lyme Disese Surveillance Summarya
Bacterial Zoonoses Branch. Division of Vector-Borne Infectious Diseases.. National Centee for Infetious Diseases, Centers for Disease Control and Prevention.
Volume 5, -:No. 2
October, 1994
Steere, AC.; Dressler, F..; Yoshinari, NH. The T-Cell Proliferative Assay in the Diagnosis of Lyme Disease. Ann Intern Med. 1992 Apr 1;116(7):603.
Dattwyler, Raymond J.; Volkman, David J.; Luft, Benjamin J.; Halperin, John J.;
Thomas, Josephine; Golightly, Marc. Seronegative Lyme Disease.
N Engl J Med 1988; 319:1441-1446December 1, 1988
US Patent Appl. 10/222,566 (Aug. 13, 2004)
VMP-like sequences of pathogenic borrelia
Noris, Steven J.; Zhang, Jing-Ren; Hardham; John M.; Howell; Jerrilyn K.;
Barbour; Alan G.; Weinstock; George M.
Steere, Allen C., Schlesinger, Peter A.; Duray, Paul H.; Burke, Barbara A.; Stillman, Thomas. Maternal-Fetal Transmission of the Lyme Disease Spirochete, Borrelia burgdorferi. Annals of Internal Medicine . (July 1, 1985) vol. 103, no.1, p. 67-68.
Borrelia Burgdorferi --Material Safety Data Sheet. Canadian Office of Biosafety Information edited by the Colorado State University Office of Biosafety; June 16 1998.
(the version you get now and the original version--available at ctlymedisease.org, differ in only one way. see the "laboratory hazards" sections.)
Burgess, Elizabeth C.; Amundson, Terry E.; Davis, Jeffrey P.; Edelman, Robert.
Experimental Inoculation of Peromyscus spp. With Borrelia burgdorferi: Evidence of Contact Transmission
Am. J. Trop. Med. Hyg., 35(2), 1986, pp.355-359
Not to pile on, but Thom Denick (74) voiced my first thoughts too. Discover magazine took a credibility hit here.
And it also reminds me of Don McLeroy's (former Chairman of the Texas State Board of Education) comment. He was angered that evolution was being taught in the schools and said, "Somebody has to stand up to these experts".
blogs.discovermagazine.com/badastronomy/2009/05/21/oh-texas-this-guy-runs-your-school-board/
You mean the studies from the IDSA authors?
That's all archived at lymecryme.com --mostly in the "treatment failure in their own words"---"or available through pubmed or, I think, JSTOR.
Will do this at some point later when I have time, as it's a lot to go hunt down.
here's the source for std info.
www.anapsid.org/lyme/bach.html
and here are the article names, in case you want to go look these up in the mean time:
Luft BJ, Gorevic PD, Halperin JJ, Volkman DJ, Dattwyler RJ. A perspective on the treatment of Lyme borreliosis. Rev Infect Dis. 1989 Sep-Oct;11 Suppl 6:S1518-25.
Benach, J. L. and Garcia Monco, J. C. Aspects of the Pathogenesis of Neuroborreliosis
U.S.Patent Appli. No. 11/196,475, Unpublished (filing date August 3, 2005)
(Raymond J. Dattwyler; Maria J.C. Gomes-Solecki; Benjamin J. Luft; Dunn, John. J., applicants)
Klempner, Mark S., Norlong, Richard, Rogers, Rick A. Invasion of human Skin Fibroblasts by the Lyme Disease Spirochete, Borrelia Burgdorferi. The Journal of Infectious Diseases Vol. 167, No. 5 (May, 1993) pp.1074-1081
Nocton, James J., Bloom, Bradley J., Rutledge, Barbara J.,, Persing, David H., Logigian, Eric L., Schmid, Chritopher H., Steere, Allen C. Detection of Borrelia burgdorferi DNA by Polymerase Chain Reaction in Lyme Neuroborreliosis
The Journal of Infectious Disease Vol. 174 No. 3 (Sep .1996) pp 623-627
Shadick, Nancy A., Phillips, Charlotte B., Logigian, Eric L. Steere, Allen C., Kaplan, Richard F., Berardi, Victor P., Duray, Paul H., Larson, Martin G. Wright, Elizabeth A.,
Wright, Elizabeth A., Ginsburg. Katherine. S., Katz, Jeffery Z., Liang, Matthew H.
The Long-Term Clinical Outcome of Lyme Disease
A Population-based Retrospective Cohort Study
Annals of Internal Medicine Volume 121, No. 8, (Oct. 15, 1994) pp. 560-567
Klempner, Mark S; Peacocke, Monica; Georgilis, Kostis. Fibroblasts protect the Lyme Diseae Spirochte,, Borrelia burgdorferi, from Ceftrizxone in Vitro.. The Journal of Infectious Disease 1992;144;440-4
Barbour, Alan G.; Karagis, Robert J.; Dever, Lisa L.; Jorgensen, James H. InVivo Activies of Ceftriaxone and Vancomycin against Borreia spp. In the Mouse Brain and Other Sites. Antimicrobial Agents and Chemotherapy (Nov. 1996,) p. 2632-2636
Barbour, Alan G.; Hayes, Stanley F. Biology of Borrelia species. Microbiological Reviews. (Dec 1986) Vol. 50, No. 4. P 381-400.
Open Meeting of: The Vaccines and Related Biologics Products Advisory Committee. Food and Drug Administration. June 7, 1994.
Aguero-Rosenfeld, Maria E.; Nowakowski, John; McKenna, Donna F.; Carbonaro, Carol A.;
Wormser, Gary P.
Serodiagnosis in Early Lyme Disease
Journal of Clinical Microbiology, Dec. 1993.
p. 3090-3095
Barbour, Alan G.; Blank, Eric; Dattwyler; Raymond J.; Hanson, Sharon
Johnson, Russell C.; Lambert, Frank W.; Martin, Robert; Ryan, Raymond W.;
McSweegan, Edward; Schwan, Thomas; Steece, Richard; Steere, Allen; Temperi ,Ralph J.; Weinstein, Arthur. Lyme Disese Surveillance Summarya
Bacterial Zoonoses Branch. Division of Vector-Borne Infectious Diseases.. National Centee for Infetious Diseases, Centers for Disease Control and Prevention.
Volume 5, -:No. 2
October, 1994
Steere, AC.; Dressler, F..; Yoshinari, NH. The T-Cell Proliferative Assay in the Diagnosis of Lyme Disease. Ann Intern Med. 1992 Apr 1;116(7):603.
Dattwyler, Raymond J.; Volkman, David J.; Luft, Benjamin J.; Halperin, John J.;
Thomas, Josephine; Golightly, Marc. Seronegative Lyme Disease.
N Engl J Med 1988; 319:1441-1446December 1, 1988
US Patent Appl. 10/222,566 (Aug. 13, 2004)
VMP-like sequences of pathogenic borrelia
Noris, Steven J.; Zhang, Jing-Ren; Hardham; John M.; Howell; Jerrilyn K.;
Barbour; Alan G.; Weinstock; George M.
Steere, Allen C., Schlesinger, Peter A.; Duray, Paul H.; Burke, Barbara A.; Stillman, Thomas. Maternal-Fetal Transmission of the Lyme Disease Spirochete, Borrelia burgdorferi. Annals of Internal Medicine . (July 1, 1985) vol. 103, no.1, p. 67-68.
Borrelia Burgdorferi --Material Safety Data Sheet. Canadian Office of Biosafety Information edited by the Colorado State University Office of Biosafety; June 16 1998.
(the version you get now and the original version--available at ctlymedisease.org, differ in only one way. see the "laboratory hazards" sections.)
Burgess, Elizabeth C.; Amundson, Terry E.; Davis, Jeffrey P.; Edelman, Robert.
Experimental Inoculation of Peromyscus spp. With Borrelia burgdorferi: Evidence of Contact Transmission
Am. J. Trop. Med. Hyg., 35(2), 1986, pp.355-359
I'm hoping Ms. Weintraub will return and clear up something for me - just what is a "classically trained journalist"?
Is that someone who does the journalistic equivalent of going to Paris to study with Nadia Boulanger?
Sounds awesome, whatever it is.
I assumed a "classically trained journalist" was someone who had studied Latin and ancient Greek, so no great surprise that their understanding of science is less than medieval.
@Dangerous Bacon, re: "classically trained journalist"
I'd thought that that meant they were well-read in Latin and Greek...
Dang, beat me to it and even wrapped it up with a nice quip. Hat tip to LW.
I thought "classically trained" was only considered a plus for musicians. I can't imagine there any "classically trained" physicists anymore.
With that phrase Ms. Weintraub gave a clear indication that she considers current journalistic practices to be so perfect that they cannot be improved. The phrase also shows that she is probably impervious to evidence in that regard.
Now I know why Jay Gordon made an appearance on stem cell autism without digging himself into a hole with a bucketwheel excavator. He lent it to Ms. Weintraub.
This comment thread is nearly impossible to read with lengthy crazy-comments. But it's worth it...great piece, good comments.
"just what is a "classically trained journalist"?"
A journalist trained to say what everyone else is saying, ala a Greek Chorus?
Thanks, Fuzzzone, but I think Jon H topped us both.
I bow to you, Jon H..
Isn't Tony Bateson the one who's standard of evidence for "an unvaccinated child with autism exists" is "I must personally see their medical records"?
@ Pam Weintraub
I can name two without a lot of effort.
PalMD: I'm guessing you and Orac could scrape together a few more MD's from another blog that would agree with you both.
Weird to see someone affiliated with Discover Magazine tossing out "classically trained journalist" as an insult to "new media" types. Do you view your affiliated bloggers with the same disdain Ms. Weintraub?
I don't know, PalMD. I take her as saying that you could address words to her until you were blue in the face but you couldn't *tell* her anything.
Theoretically, in an immunosuppressed individual, the Lyme spirochete may have the ability to thrive.
It has the ability to go cell wall deficient, and macrolides, Beta-lactam antibiotics, tetracyclines (basically all the drugs used in trials) are not able to kill CWD forms.
So what does this mean?
Essentially, the recommended antibiotics may act more like a bacteriostatic than a true antibiotic. In an individual with a healthy immune system, this action might give the immune system the opportunity to kill spirochetes as CWD spirochetes slowly convert back to regular spirochetes.
I also wonder if these patients may have some other borrelia such as TBRF, or even another spirochete altogether. Unfortunately, commercial labs don't really have much to offer when it comes to diagnosing various Borrelia infections. All they seem to offer is an ELISA and Western Blot for Lyme Disease.
Unfortunately, commercial labs don't use genus specific primers to test for Rickettsia spp. or Borrelia spp. If I remember right, there is basically a Lyme test and an RMSF test. I think that's it. Sure there may be some out-of-pocket labs that can perform these kind of tests, but let's get real, most patients are sent to LabCorp or Quest by their doctor.
Vets are using genus specific primers, and when it comes to human testing we seem so overly concerned with specificity that I'm sure there are plenty diseased people that are simply missed. Misdiagnosis seems to be of more concern than finding people who are truly diseased.
When it comes to the advocacy surrounding the disease, it can be difficult to separate those that are truly sick with tick-borne disease, and those that seek the diagnosis of Lyme disease to explain their symptoms. Unfortunately, for this reason, I believe the truly ill may be simply ignored.
We also have to take in account that there are many other pathogens that can be transmitted from a tick that have symptoms that resemble that of Lyme disease, and it's not uncommon for an infected individual to receive multiple infections at the same time.
Having now read a few posts at the Knight Science Journalism Tracker, I am less than impressed by the "Journalism". It seems that the authors are a bit too credulous of those with compelling narratives for my taste. Aren't Investigative Journalists supposed go beyond the narrative and get to the bottom of the story?
Theoretically, in an immunosuppressed individual, the Lyme spirochete may have the ability to thrive.
It has the ability to go cell wall deficient, and macrolides, Beta-lactam antibiotics, tetracyclines (basically all the drugs used in trials) are not able to kill CWD forms.
So what does this mean?
Essentially, the recommended antibiotics may act more like a bacteriostatic than a true antibiotic. In an individual with a healthy immune system, this action might give the immune system the opportunity to kill spirochetes as CWD spirochetes slowly convert back to regular spirochetes.
I also wonder if these patients may have some other borrelia such as TBRF, or even another spirochete altogether. Unfortunately, commercial labs don't really have much to offer when it comes to diagnosing various Borrelia infections. All they seem to offer is an ELISA and Western Blot for Lyme Disease.
Unfortunately, commercial labs don't use genus specific primers to test for Rickettsia spp. or Borrelia spp. If I remember right, there is basically a Lyme test and an RMSF test. I think that's it. Sure there may be some out-of-pocket labs that can perform these kind of tests, but let's get real, most patients are sent to LabCorp or Quest by their doctor. Also, even if completely legit, the other labs may be seen with skepticism because of the controversy that surrounds Lyme and tick-borne disease.
Vets are using genus specific primers, and when it comes to human testing we seem so overly concerned with specificity that I'm sure there are plenty diseased people that are simply missed. Misdiagnosis seems to be of more concern than finding people who are truly diseased.
When it comes to the advocacy surrounding the disease, it can be difficult to separate those that are truly sick with tick-borne disease, and those that seek the diagnosis of Lyme disease to explain their symptoms. Unfortunately, for this reason, I believe the truly ill may be simply ignored.
We also have to take in account that there are many other pathogens that can be transmitted from a tick that have symptoms that resemble that of Lyme disease, and it's not uncommon for an infected individual to receive multiple infections at the same time.
I hope you didn't embarrass yourself by this comment naturalskeptic.
Science, where art though?
No further comments necessary.
I was a physician first, trained at the place where Lyme Disease was discovered. I heard all the experts, drank and digested the Kool Aid. Imagine my surprise when I came down with "unexplainable symptoms" defying ten different doctors there, initially negative for Lyme DIsease and a million other tests ran.
When I continued to become sicker and sicker, at my spouse's urging I went to some Lyme Quacks, who immediately recognized my symptoms. Explained them to me. When I told them things/symptoms that I had told the "regular" Ivy docs who laughed or rolled their eyes, these physicians listened and then countered--well if you have that symptom, you probably have this and this and that one--all correct.
So with dramatic improvement on antibiotics, I returned to the original "earth is flat" Ivy League doctors who did, in fact, then suggest I needed a psychiatrist-and that I was causing worldwide antibiotic resistance.
Once you go rogue medically, you suddenly meet not one or two, but dozens and dozens of similar stories--stories you could not and would not make up--including several from physician colleagues. We are staying underground because it is medical reputation death to even QUESTION the Lyme dogma, which is to borrow your phrase, almost certainly dead wrong. Chronic Lyme Disease does exist. Mine did for several years. It was chronic because it was not diagnosed and not treated. Now it is better with years, not months, years of antibiotics.
Sorry, its true. When I am better or retired I'll publish the medical story and all my medical records. In the meantime, IDSA docs review all the grants--so no studies are being done that could possibly refute the science.
THe science, such as it is, is very very limited. Please look it up and count the number total of patients enrolled. BTW patient selection in the most important article used to refute treatment of chronic lyme was mostly horribly ill already treated resistant patients-not a good group for proof of concept.
How about a study with a few hundred of folks like me. We are all out there.
I forgot to mention in my other post that even though these antibiotics may act more like a bacteriostatic, I think it's plausible that they could kill more bacteria during the reproduction cycle (assuming the bacteria convert to a non-CWD state to reproduce).
However, if I remember right, the reproduction cycle is rather long. However, I can't find the literature for the life of me.
MD with Lyme, is it possible you had a persistent infection that responded to antibiotics, followed by sequelae of that infection that simply took a very long time to improve? I'm not sure how you could conclude that years of antibiotics helped without some sort of control for the natural course of the illness.
And to the spammer: please stop. You aren't impressing anyone and you're making this thread difficult to read.
MD with Lyme, you know that we all know that you're a fake, don't you? Your submission to our little flamefest has the Argument from Authority smeared all over it, what with it coming from a gen-u-wine Em Dee and all. It also has that favorite Spielberg plot line of The Hardened Skeptic Who is Transformed into a Believer by extraordinary personal experience. Only it's not Spielberg. Not even close. The turgid Lifetime Movie prose and clumsy grammar betray a lack of formal education (at least not much beyond high school).
Your piece lacks the poetic, heartrending bathos of Achey's over the top entries, relying somewhat more on the unintentionally hilarious "you'll all be sorry when I'm dead" tone of an angry child. That said, the whole "earth is flat" doctors bit was an appreciated touch of color . . . misapplied, but colorful.
You really ought to just wait until you "retire" and unleash your groundbreaking work on a stunned scientific community. Then we shall all stand, slackjawed in amazement and deeply humbled at our comeuppance, as you stride to the lectern to collect your Nobel Prize in medicine.
Or not.
Pareidolius I think you're jumping the gun. It is possible MD with Lyme is sincere.
When I was a med student I had a resident who came down with Lyme. It was sad because she was brilliant, warm, and a lot of fun, but she couldn't work. She developed a number of symptoms including hyperacusis that made leaving her home difficult.
I still think of her and I hope she's recovered.
Pam Weintraub,
Medical reporters need a list of reliable physician researchers who can help weight the evidence for and against some hypothesis. But how do you judge who is reliable?
Well the good ones understand that you need to look at *all* the relevant scientific evidence. That's a f_cking lot of work. But to do otherwise is to cherry-pick.
I've been reading Orac for three years now. He is one of the good ones, no question.
It's too bad you got off on the wrong foot here. Maybe that will change.
Truth before fairness. We, the public, depend upon you for the truth.
I find this very applicable.
http://www.youtube.com/watch?v=CeRMDOdjFl8
Re- "spamming"
There was one recent double-post, which was unintentional, and earlier on I tried an alternative e-mail account when I thought one stopped working.
So no "spamming." And no desire to impress...only give you info that'll save your soul when you get exposed to it.
I posted the names of the studies because I was asked to provide references.
Orac's premise, that he-said, she-said articles so prevalent in journalism today do the reader a disservice by fogging up the truth, at least when the truth is knowable and lies on one side or the other of center, is an accurate one. Unfortunately, with regard to the Tribune article, Orac has waded into an area of science and medicine that he clearly is clueless where the truth is concerned.
Certainly the Tribune authors avoided false balance. But they avoided it not by studying the science and producing a well crafted investigative report. Instead, what they did was make a judgment call on which experts sounded more credible and then disregarded anything and anyone that disagreed with those experts. This may be great reporting for former restaurant reviewers, as these journalists once were, but not for science writers.
As someone who has not only experienced chronic Lyme first hand, but studied hundreds of peer reviewed journal articles as well as watched lectures by scientists on both sides of the divide, the one thing I am sure of is that there is no definitive answer as to how to diagnose or how to treat persistent late stage Lyme disease, and anyone who tells you otherwise is lying.
Additionally, there are very credible studies, most recently the Barthold mouse models, which have repeatedly found that the Lyme bacteria has the ability to persist and remain capable of infection despite treatment with the IDSA recommended courses of antibiotics. Barthold's study is inconclusive as to whether the treated spirochetes are still capable of causing disease, but there are other studies which suggest that is the case.
Without an accurate and direct test there is no way on earth one can claim to know that the spirochete has been eradicated. The Tribune authors chose to paint chronic Lyme physicians as a bunch of quacks when the real truth may be more along the lines of the IDSA affiliated "scientists" being a bunch of flat earthers whose work is often coincidentally helpful to their insurance benefactors (who of course don't want to pay for lengthy courses of antibiotics).
Never mind that the same 15 or 20 researchers have colluded to control the definition of Lyme disease and what research gets funded and published for the last 25 years. Apparently, for some of you, as long as they sit in an ivory tower at a prestigious university, anything they publish must be as good as gold. No need to look deeper and see how flawed their work actually is, nor how they reached conclusions that go well beyond what their studies actually proved.
And never mind that the IDSA guidelines were written and endorsed by these same 15-20 "scientists". I guess the fact that it has 5000 members, almost none of whom studied the work of those 15 or 20, somehow makes the guidelines more legitimate.
As someone who earned a degree in engineering (with honors) from a prestigious university, I must say that I was absolutely naive as to how easily science could be distorted and corrupted. That's been the harshest lesson for me as I waded through the science and studied the politics of Lyme disease. Equally appalling is the dogmatic group-think that 15-20 flat earthers are capable of creating. But I guess that is nothing new.
Upon first reading Oracâs piece I must admit that I was ready to write off Paul Raeburn as not much more than a hack; wedded to a false notion of balance as a virtue in and of itself, in order to obviate the need to actually inform readers.
However, after reading Pam Weintraubâs comments (thatâs Pam Weintraub, author of not only of Cure Unknown: Inside the Lyme Epidemic, but also, Bioterrorism: How to Survive the 25 Most Dangerous Biological Weapons and co-author of The 30-Day Higher Consciousness Series), I now realise I should balance my view of Paul, by acknowledging the possibility that he may in actual fact be a perverted serial killer; whoâs depraved slaughter has already cast a bloody pall across two continents.
â¦am I doing this right?
Ms. Weintraub,
Your arrogant attitude is exactly the reason my wife left journalism in college and transferred to a science major. The very idea that journalism standards and methods are above critique is laughable, particularly in light of the many failures in recent years for the press to accurately communicate science to the general public. People like you are not part of the solution - you are the problem.
No way! LOL, that's pretty funny.
Whoo, so many copy/pasta trolls, not being able to differentiate between "using antibiotics to treat a questionable diagnosis is a bad idea", and "Lyme isn't real".
I have all the symptoms of "Chronic Lyme", and if I went to a Lyme quack, I have no doubt they'd tell me it's Lyme. Thing is, I don't - I have overactive nerves and possible immune system involvement (Dr. House: "It's not lupus. It's never lupus"), but I don't have Lyme disease. And the idea of taking antibiotics for years makes my entire body flinch (helloooo, chronic yeast infections!). Even if there were such a condition (which, as you point out, is different from stage IV untreated - or unsuccessfully treated - Lyme disease), it's folly use a treatment that causes far more problems than it solves. At the very least, one can do quite well managing the symptoms until more study is done.
Tsouderos' article is very good - it looks at the dangers of treating an unverified condition with long-term antibiotics, and points out that the people advocating it aren't perhaps the most trustworthy voices of authority. It's a great article, and I wish more journalists were as well-written.
When I think of chronic Lyme, I think of people that were infected years ago & never received a proper diagnosis or treatment (I've seen people suffer from joint inflamation & organ failure because of lack of treatment) - but the idea that you can't get rid of it with a full course of antibiotic treatments does strike me as a bit "outlandish" to be sure.
My mother was one of those that suffered from severe disk degeneration in her back for years - until she finally was tested for Lyme (she had it), went through the standard treatment & saw significant improvements in her health immediately after.
"As someone who earned a degree in engineering (with honors) from a prestigious university,"
Seeing that is like the cherry on top of a delicious sundae.
Hey Lawrence,
SInce you actually seem like someone who may be genuinely interested in learning...
You might want to also check out lymeinfo.net--they have a huge catalog of citations, some of which I know state that Bb can . Then there's this, showing that the most effective drug for it we know--the only to inhibit its efflux pump and act on ALL forms of the organism--can't even cure it. This study's from UC-Davis, and should've ended the debate immediately upon publication. The reason it didn't is that this is a coverup maintained through force and propaganda like the Tsouds article.
http://aac.asm.org/cgi/content/abstract/54/2/643
So you can imagine how woefully inadequate 200 mg/day of doxycycline, which is >1000x less active against lyme (http://www.ncbi.nlm.nih.gov/pubmed/19182236) is for prophylaxis, especially given that this can reach the brain, where it becomes intracellular (like all borrelioses), within 6 hours of being introduced into a host.
In fact, I got full-blown neurological Lyme 10 days after my tickbite WHILE taking the CDC-reccomended 200 mg/day of doxy. If you can't get tigecycline immediately after your bite (feel free to take any of the research I've posted here to your doctor wen trying to get the right txment--it can only help), DEMAND that doxycyline be at 400 mg/day and continue for at least 3 months after your last symptom leaves. Go the distance to get this treatment....
...
...
This is your only chance at cure. At not having to worry about transmitting this for the rest of your life.
Honestly, I wouldn't share food or drink with your mother if I were you. Google Barbour Biology of Borrelia Species, and go to the top of p394. If you google things like Relapsing Fever Bites Animals, you'll find further documentation of this, and since it can cross the mucosa, it's not inconceivable that food or drink could also spread it.
I think this guy may be the only one currently researching lyme in saliva, though:
http://lymebook.com/nordquist/
take your doctor these guidelines:
http://www.ilads.org/files/burrascano_0905.pdf
though this has nothing to do with lyme, it does document that you can take 400 mg/doxy and with no problems.
http://informahealthcare.com/doi/pdf/10.1080/00365549309169687
So, MD with Lyme, as a trained physician, you missed the acute phase of Lyme disease on yourself, you got tested for it, it didn't come up positive (at the early, proven to be detectable stage), and you still ended up with Lyme hidden in your body causing all the symptoms?
Wherever you got trained, you should ask for a refund for your diagnostics class.
With regards to the "cover both sides" form of journalism, this photocomic caught my attention:
http://survivingtheworld.net/Lesson408.html
Really, Chronic Lyme does not exist?
Why donât you read this and tell me if it is possible:
http://www.northeastern.edu/adc/publications/KL2007Pers.pdf
and then this:
http://www.empirestatelymediseaseassociation.org/Persistence/Stephen_W_…
I have the disease and it always amazes me how the ignorant can claim that something doesnât exist by their opinions alone.
If you persecute the doctors willing to treat a diseae, it is logical that you will end up with a lot of quacks.
The existence of the disease should not be based on the human element around it.
Gentlemen, I hope you all live long enough to one day eat crow on this subject.
Good day
John S, your references are good - they all show that you can clearly identify the persistent pathogen by scientific means. So you should have no issue getting your CLD confirmed by any standard histological lab.
@John S (118): on the pdf you linked to, it states the author has conflicts of interest. Since I can't seem to access the on-line version to find out what they are, can you please give them?
The mouse paper was interesting. So none of the antibiotic-treated mice were able to transmit infection via ticks. Sounds to me that if you get appropriate treatment with antibiotics, you don't have Lyme disease any more. Certainly, the paper does not support months and years of antibiotic therapy, from what I read.
The PDF declares a competing financial interest, however I went to the web version (as directed in the pdf) and it says there is no competing interest, so who knows.
I note that our prestigious journalist disappeared post-haste in a puff of contaminated smoke as soon as her massive conflict of interest was disclosed.
Protip: Don't come on here waving your "scientific" and "journalistic" credentials around when you're soaking in the woo, and making a profit off it. There are people who read this blog who have better research skills than you do; I guarantee it, because I'm one of them. I also guarantee I have better professional communications ethics than you do; you failed to disclose! And you had the nerve to come on here and lecture people on journalistic practices! It'd be to laugh, if the hypocrisy didn't smell so bad. (I'm not a journalist, but I am a communications professional, and I take accuracy and integrity seriously.)
From a NPOV, there are infections that require years of antibiotics, and even those with acne are prescribed years of antibiotics. Yes, you are completely right on the fungal issue. It irritates me how pharmaceutical antibiotics don't have built in antifungal properties when antimicrobials in nature often have both.
However, there are drugs like Nystatin and Diflucan and the latter is pretty darn effective. It does sicken me a bit how hospitals don't often administer an anti-fungal until a patient has a quarter inch of yeast on their tongue and roof of mouth. It does seem as if the alternative medical practicioners are all into yeast prevention and cleansing, and the mainstream act as if fungal infections are no big deal.
For an example, my mother took Ceftin for a kidney infection. She had a mouth full of thrush so I told to her to go to her (mainstream) practicioner. She was bold enough to say that what she had on her tongue was not yeast! Oh, I was upset, and questioned my mom if her doctor recently went blind. I gave her a short course of Diflucan, and this relatively longstanding thrush quickly cleared right up.
Well, if this is true, this isn't normal. If you have all the symptoms of Lyme and don't have Lyme, that doesn't mean you don't have anything. If symptoms are a bit more vague (as in not obvious physical symptoms like in MS) perhaps you could be suffering from a mild form of chronic fatigue syndrome? If not, perhaps you have an anxiety disorder and you are misinterpreting your symptoms altogether. That's not to say an anxiety disorder can't accompany all of these syndromes. There definitely can be a strong psychoneuroimmunological connection to all of the mentioned syndromes.
Where is the intelligent discussion? I see a lot of strong straight emotional opinions, but not much critical thinking. It's no surprise to me that nobody took the time to reply to my previous post. Everybody seems busy playing duckhunt (and yes, I am talking about both sides). I guess it's a fun game, but I haven't played it since the first Nintendo. I saw Duckhunt for the Wii the other day when Christmas shopping, and I was wondering if this a good game and if it would make a good gift.
titmouse,
I appreciate your point (and your wonderful blog). However, if MD's story is true, then perhaps posting a less finger-wagging, less dramatic and more fact-filled comment would be in order. One with references.
Living with a debilitating, chronic disease is not a joke, be it a well described illness or a vexingly evasive one. To pretend you have one in order to make a point indicates a troubled person overwhelmed by powerlessness and emboldened by anonymity (and yes, I post anonymously, just turn down the gain on your Mk VII Ironometer to prevent core flux).
But MD's M.O. is one with which I am painfully familiar. When I was a new-ager living in downtown Wooville, I would regularly use my powers of creativity for a similar evil. I would write heartrending tomes of battling Big Pharma and the eeeevil, cold scientists. I would either pose as a sufferer of the disease in question or "know someone" who suffered from it. To gild the lily, I would bestow degrees on myself from "prestigious universities" or would claim to be a doctor or scientist in order to use the Argument from Authority. This would necessitate my vanishing when a barrage of questions about myself and my degrees would come flooding in.
The fact was that I was simply an anxious, magical-thinking and immature person for whom actual reality was just too menacing a prospect. So I would defend my magical world against what I perceived as the cold, hard facts of a heartless, scientific "them", by spinning tales of triumph over Big (insert menacing industry here) and The Man.
MD's story has all the vague, dramatic components of my old yarns and not a whiff of authenticity. And yes, I could be totally wrong about MD, but know this, despite my acid-drenched snark, I have true empathy for her (or him) no matter which is scenario is true.
theoriginalihaveaches:
Then you should learn how to properly format the cites, and to find some that are less than twenty years old. Also, you need to make sure they are actual scientific studies (hint: patent applications don't count). So actually go through your cut and paste files, check to see if they are relevant, see if there have been any updates and format them so they are readable. You can actually post two URL links in a comment, so posting a link to the actual paper (or PubMed abstract) is also helpful.
Not a Doctor:
Did you get a degree in "classical engineering"? Unfortunately a degree in engineering does not give you special insight into biochemistry, bacteriology or any other relevant science that pertains to this subject. I also have a degree in engineering from one of the original programs funded by Guggenheim to promote aeronautics, and I know my limitations with things like biology, chemistry and the such. I know better than to show your kind of arrogance towards a professor of medicine (Orac) whose undergrad degree is in chemistry.
Count yourself as another engineer who has delved into biomedical issues with complete failure. Others include Andy Cutler (chemical engineer who is into mercury poisoning chelation), Gary Goldman (computer scientist editor of Medical Veritas, a quack journal), Amy Lansky (computer scientist and homeopath), plus a few others (like a vitamin D quack who is an engineer!). This is why JohnV replied with "Seeing that is like the cherry on top of a delicious sundae."
"John S, your references are good - they all show that you can clearly identify the persistent pathogen by scientific means. So you should have no issue getting your CLD confirmed by any standard histological lab."
Obviously you didn't read the article on persisters in biofilms and understand from the other article the fact that the disease sequesters it self in certain areas.
I guess If I found a willing scientist and that was willing to carve me up, yes it could be proven.
And I would do biopsies.
Give me the funding.
Anyway the article on persisters should leave no doubt that persisting bacteria may cause infection and the other article shows Lyme bacteria persist.
The jury is still out and only the ignorant can rule out that Chronic Lyme exists.
"The mouse paper was interesting. So none of the antibiotic-treated mice were able to transmit infection via ticks. Sounds to me that if you get appropriate treatment with antibiotics, you don't have Lyme disease any more. Certainly, the paper does not support months and years of antibiotic therapy, from what I read."
From what I remember the paper said infection was transfered, but nondividing spirochetes were observed.
@Chris - you left out EFT (Emotional Freedom Therapy) woomeister supreme Gary Craig.
The question is do these persisting bacteria become dividing bacteria again? Do they persist in biofilms?
If so, you have a chronic illness that would be very hard to treat with the current antibiotics.
Here is another article on persisters.
http://www.microbemagazine.org/index.php/09-2010-home/2848-persister-ce…
Ooh, thanks Militant Agnostic.
John S: throwing more antibiotics into a person makes all bacterial infections harder to treat. That is because it creates more bacterial resistant strains, no matter what the shape or type. It also screws up the rest of your body because it kills the bacteria you actually need to digest food. In general, it is a bad idea.
"John S: throwing more antibiotics into a person makes all bacterial infections harder to treat. That is because it creates more bacterial resistant strains, no matter what the shape or type. It also screws up the rest of your body because it kills the bacteria you actually need to digest food. In general, it is a bad idea."
I don't refute that throwing antibiotics at people makes more resistant strains and it is not good for you and I don't remember bringing that up. But then again we use long courses of antibiotics for acne and no one would say not to use them for tuberculosis.
If this is a chronic infection due to persister cells, then we need new antibiotics, for they obviously aren't adequate.
Anyway, yes I do take long courses of antibiotics, for I find that if I don't the symptoms worsen.
Why? That is the question. You can believe me or not. Chronic Lyme is a possibility.
Here is another article on persister cells:
http://www.microbemagazine.org/index.php/09-2010-home/2848-persister-ce…
I think this is even worse than the simpletonian "balance" business. He argues:
So they're providing the wrong balance by omitting "the serious case for chronic Lyme disease, whatever that might be." He's seriously chastising them for neglecting something when he doesn't appear even to know what that something is or whether, indeed, it exists. Of course, the straightforward response for him and Weintraub at this point would be to point to the studies that make this serious case (in light of the other findings and with full recognition of their weaknesses), but there's really no way at this point for him to emerge looking undippy.
So many amusing hockey-rink-related images this brings to mind. Shame the context deactivates the humor.
Well, they could use some training in classical thinking about science. And logic. And rhetoric.
Find out what expert physicians, clinical researchers and Lyme patients think and feel about Lyme disease directly from the source! Avoid the confusion, speculation and political posturing. http://www.lyme-disease-research-database.com/lyme_disease_blog.html
When I was in high school there was a girl who had to miss almost an entire year due to chronic Lyme disease.
About 5 years later I found out that nope, she was just pregnant.
John S: you are fishing. It is an article that may or may not pertain to what you believe, and it is a magazine, not a journal (I can't find it on PubMed, it was not about Lyme but mentioned ongoing research in E Coli). The reason you feel is more than likely either a placebo effect, or you have become dependent on them by totally screwing up your natural micro-flora.
You really ought to stop. You might feel really crappy for a while, but you need to give your body time to repopulate the beneficial bacteria. It might help if you work on getting something for depression to counteract the crappy period.
But ignore all medical advice on the internet and go to a real doctor. Avoid doctors who tell you what you want to hear, but instead go to one who is willing to help remove you from your dependence on antibiotics. The rest of us will thank you for not creating anymore antibiotic resistance strains.
"When I was in high school there was a girl who had to miss almost an entire year due to chronic Lyme disease.
About 5 years later I found out that nope, she was just pregnant."
Really, are you trying to infer that any false diagnosis dismisses any disease? We would run out of diseases pretty quickly using that method to exclude them.
Oh well, hopefully science one day can prove conclusively what is going on. Hopefully in my lifetime.
@ John S:
His anecdote is just as good as yours. Better, in fact, since there's no evidence that he's wrong. And I find this particularly ironic:
Quite strange, coming from someone who claims to know what's going on and that the scientific consensus is completely wrong.
John S, you're missing the point in those articles. You can have persistent bugs. The point is, they persist by NOT dividing, aka not multiplying, aka not doing anything. Latent infections of that kind have been known for centuries. But, once they go active, they can be a)detected b)killed.
So, your long term antibiotic treatment doesn't do anything since, as you just have shown, the pathogen isn't reacting to it. And oddly enough, it never comes out of hibernation either in order to be detectable. In which case you could kill it with a usual pulsed antibiotic.
Salty Current, you're right, of course. I was thinking of them as classically *educated*, which of course they are not. *Trained* as a Greek chorus is a much better explanation.
I stand by my comment on their understanding of science, however.
"John S, you're missing the point in those articles. You can have persistent bugs. The point is, they persist by NOT dividing, aka not multiplying, aka not doing anything. Latent infections of that kind have been known for centuries. But, once they go active, they can be a)detected b)killed.
So, your long term antibiotic treatment doesn't do anything since, as you just have shown, the pathogen isn't reacting to it. And oddly enough, it never comes out of hibernation either in order to be detectable. In which case you could kill it with a usual pulsed antibiotic."
First the article on persisters states bacteria can come back from a nondividing state. The question is can Lyme?
I never said I know exactly what is going on. I said there is evidence to show that Chronic Lyme is a possiblity.
Amazing how people twist your words.
I e-mailed the author of the study and he said it was quite possible Lyme could do so.
So I tend to believe IT IS A POSSIBLITY.
"John S: you are fishing. It is an article that may or may not pertain to what you believe, and it is a magazine, not a journal (I can't find it on PubMed, it was not about Lyme but mentioned ongoing research in E Coli). The reason you feel is more than likely either a placebo effect, or you have become dependent on them by totally screwing up your natural micro-flora.
You really ought to stop. You might feel really crappy for a while, but you need to give your body time to repopulate the beneficial bacteria. It might help if you work on getting something for depression to counteract the crappy period.
But ignore all medical advice on the internet and go to a real doctor. Avoid doctors who tell you what you want to hear, but instead go to one who is willing to help remove you from your dependence on antibiotics. The rest of us will thank you for not creating anymore antibiotic resistance strains."
Here you go http://www.microbemagazine.org/index.php/09-2010-home/2848-persister-ce…
If you don't trust that source I don't know what to tell you.
Well, I gave my information.
People can do what they want with it.
Have a Merry Christmas
http://www.microbemagazine.org/index.php/09-2010-home/2848-persister-ce…
Personal stories like this make me a little more hopeful for the future of humankind.
You are probably right about the MD person. I tend give people the benefit of the doubt if I think I can handle being fooled. That's not always wise. *shrugs*
A lot of the pro-chronic Lyme people are citing a couple of papers that they feel back their position. However they must review *all* the evidence relevant to Lyme. They must look at the big picture.
Wild goose chases in medicine always start with a few positive studies followed by better studies that fail to replicate the earlier findings.
Wake me when we find either
- Borrelia biofilms too thick for antibiotics to reach yet too small to be found using current methods of detection OR
- that big cache of WMDs somewhere in Iraq OR
- Russell's teapot orbiting above the earth.
John S,
Fascinating that you went from "The jury is still out and only the ignorant can rule out that Chronic Lyme exists" to "Chronic Lyme is a possibility" in a matter of a few posts. Funny how that happens when you get called out!
Ms. Weintraub,
I've always contended that when someone with a reasonably-spiffy title defends woo that there's usually money involved. Score one for me. ;)
The Chicago Tribune was blatantly not balanced. For a balanced overview regarding Lyme Disease and its controversies, please take a look at this article:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2048873/?tool=pmcentrez
The pseudo-intellectual trolling on this blog quite frankly disgusts me, but conversely I hope that is just what it is.
"Fascinating that you went from "The jury is still out and only the ignorant can rule out that Chronic Lyme exists" to "Chronic Lyme is a possibility" in a matter of a few posts. Funny how that happens when you get called out!
Ms. Weintraub,
I've always contended that when someone with a reasonably-spiffy title defends woo that there's usually money involved. Score one for me. ;)"
What planet are you on buddy? The Jury is still out and it is a possibility mean the same thing.
Lol, what do you think the jury is still out means.
Why am I wasting my time. Thanks for the laugh.
Counterpoint: Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease
http://www.ilads.org/files/publications_stricker_06_2007.pdf
Please read, and refute, at you leisure.
John S: Technically the jury is out on everything. No one can disprove jack. BUT that does not mean there is enough evidence to shove an unverified diagnosis down the throats of patients.
No one shoved an unverified diagnosis down my throat and I wasn't advocating that anyone should.
I crushed a tick on my thigh and a month and half later I had a bullseye rash, positive Elisa, positive Western Blot and then they told me after 3 weeks of antibiotics that I would be fine. When I wasn't, they told to ignore the symptoms and I listened.
After a few months of decline I found out on my own that antibiotics help. I sought them and I found them.
Does everyone have Lyme who thinks they have it, I don't think so. Are their people praying on the desperate, who can't get adequate care due to the current guidelines, yes.
But the horrible state of human affairs surrounding this disease has no relevance as to whether it exists.
But I'm not alone.
http://news.bbc.co.uk/2/hi/health/7461617.stm
I find interesting that so many have the same problems after a tick bite and what we say is dismissed out of hand.
One day the truth may come out.
I'm sure most of you would be seeking antibiotics if they found themselves in the same boat that I found myself in. I'm certain one day some of you will.
It is alot different when you are in the fire.
John S:
I don't think any compassionate person would deny that the people diagnosed with chronic Lyme disease are actually suffering. But the point about shoving an unproven diagnosis down a person's throat is that if you are diagnosed with the *wrong* thing, it stops you finding a treatment -- or, at the very least, stops society from learning more about the disease and being able to treat it more effectively.
I don't doubt your story, but given how common tick bites are, it seems likely that an association could be found regardless of whether or not the tick bite actually caused the condition. Thus, anecdotes are not that useful in understanding the disease. Anecdotes don't tell us cause and effect. They show us why we should care, and they are important for that reason, but they do not tell us what is true. It takes a lot of carefully collected data to do that. How do you know the antibiotics are really responsible for your improved state of health? Remember, coincidences do happen -- during the summers I take Pulmicort, but is it really making my asthma better, or is the variable course of my asthma just being kind to me right now? I have anecdotes galore, but it's the clinical trial data that convinces me the Pulmicort really is working and it's not just my own desire for it to work making it seem as though it is.
Indeed, one day the truth may come out. But it'll have a hard time coming out when the science of Lyme disease is decided by politicians, and when those most invested in chronic Lyme disease would rather spend their effort treating patients than finding out whether or not they're actually doing the right thing for their patients. Too many of the positive studies I have seen have been enterprises in proving a point rather than testing an hypothesis; science can't be fair or unbiased or *truthful* if it does not entertain equally the possibility of being wrong.
Calli Arcale:
And creating more antibiotic resistant bacteria along the way!
You know what, fuck this.
I made a couple comments, and nobody seems cares about intellectual discussion. I'll prove that I am done and more immature than you.
Fuck all of you that post here. You are all (as in everybody) a bunch of cows and llamas.
But I like cows and llamas.
I don't think I know what I am talking about. I'll be back after I pop my anti-psychotics and down some a lot of Jack.
This is an excellent blog discussion on the chronic Lyme diagnosis and treatment 'war'. It is unfortunate that there are so many doctors, LLMDs, that are treating it recklessly and endangering their patients and the public. I understand the topic here is focused on the use of antibiotics, but there are many other medications, supplements and 'therapies' being used by some LLMDs and other physicians, which are just as detrimental to the patient.
I know this from personal experience. I was treated by top ILADS LLMD physicians for many years. Refer to the ILADS conference video's for more details of their alternative and non-standard treatment protocols. http://www.mediafire.com/?fgpl475z9awka
I was misled into believing the antibiotics were responsible for every perceived improvement. I have now learned that those 'improvements', what LLMDs call the 'wax and wane' of chronic Lyme disease or the 'bleb cycle', were in fact due to concurrent changes in other medications. These doctors are habitually misdiagnosing the side-effects and interactions of medications as Herx reactions.
I know my statement here is just as anecdotal as the Lyme patients posting in defense of their treatment. I hope that political leaders soon recognize the dangers of letting non-medical professionals and self-appointed scientists make decisions on how to diagnose and treat disease. The medical profession needs to police itself, not the legislators and not the voters.
I think part of the recent 'spread' of news articles supporting LLMDs is due to the fact that they are being investigated by their respective medical boards. They need to gain public approval to survive. This is not medicine. This is politics. I have seen no indication that they are being investigated solely because of antibiotic prescriptions. There are many other things being done by some of these doctors that are endangering their patients. Aside from the antibiotics, many Lyme patients are on excessive medication regimens including dosages in excess of FDA prescribing guidelines. Other medications prescribed for concurrent use are contraindicated and should never be taken together.
In general it seems that physicians are not paying close enough attention to the medications that they are prescribing their patients. They are especially not paying enough attention to the medications other physicians are prescribing the shared patient. This careless disregard is not limited to LLMDs. However, the medications being prescribed to treat Lyme and the symptoms are often powerful CNS drugs. Life-threatening reactions are bound to happen when patients are bombarded with such excessive and potent drug and supplement regimens. These life-threatening reactions are also being habitually misdiagnosed as Lyme-related symptoms. For example, LLMDs are prescribing Alzheimer drugs to treat Lyme disease. The problem is that they cannot tell the difference between the drug-induced 'dementia' from their excessive treatment protocols and the symptoms of real disease. Dr. Bransfield, who is President-Elect of the NJ Psychiatric Association seems to be supporting the use of Namenda to treat Lyme disease. I think many of the chronic Lyme patients are the unfortunate result of out of control prescribers.
I only hope that the medical profession, the IDSA, NIH, etc., continue to fight this Lyme 'war' and stand up to ILADS and other advocacy organizations that support these reckless and unethical doctors who practice on the edge of the law.
"And creating more antibiotic resistant bacteria along the way!"
Antibiotic resistance comes about as a result of undertreatment of bacterial infections as well as overtreatment, if not more so. This is why you are supposed to finish the course of antibiotics regardless of symptoms. Surely you know this?
The IDSA guidelines essentially guarantee that borrelia will become resistant to most antibiotics since their recommendation is to drastically undertreat patients with borrelia infections, similar to what used to be the case with tuberculosis. These days tuberculosis treatment can extend for 9 months or more. Why do you think lyme disease is the fastest growing tick borne illness in the USA?
I am looking forward to seeing a blog post mocking and ridiculing tuberculosis patients for wanting more than 2 weeks of antibiotics and blaming them for the creation of the next generation of superbugs. Should make for some interesting comments.
Tuberculosis treatment follows evidence-based guidelines reflecting the difficulty of eradicating organisms actually identified in the body.
The long-term antibiotic treatment of purported chronic Lyme disease in the absence of evidence of infection does not.
The consequences of antibiotic misuse can be fatal.
Kwackmeister -- any antibiotic treatment, for any duration, can act as a selective pressure on microorganisms. This is partly because there is no antibiotic which successfully kills all bacteria.
Discontinuing antibiotics too early can allow some of the targeted bacteria to survive; this is why if you do initiate antibiotic treatment, it's very important to go all the way. But it's a mistake to think that if we just lengthen the therapy, we will eliminate the risk. After a certain point, the patient's internal ecosystem will stabilize with the antibiotic present.
This is most easily demonstrated in livestock. It is a common practice to keep entire herds on low dose antibiotics, discontinuing them far enough prior to slaughter that there shouldn't be any antibiotic left in the meat. The idea, not adequately tested but widely believed, is that if the animals are already on antibiotics, they'll be less likely to get infections and consequently will not rack up as many vet bills prior to sale. It's not clear whether this practice really does help enough to justify the cost of the antibiotics (low) or the risk of breeding so-called "superbugs". But one thing we do know: it *is* breeding resistant strains of bacteria such as E. coli, commonly found in mammalian GI tracts and a significant source of food poisoning.
It's not that long-term low-dose antibiotics don't work. They do, and there are some well-established indications for them. But the practice is associated with some significant risks, and there doesn't seem to be adequate study of whether its use justifies those risks in the case of what is termed chronic Lyme disease.
Incidentally, as I understand it, the main reason for the longer course of antibiotics in tuberculosis patients nowadays is because it's a much bigger risk to public health because it is so contagious. It's a bit like fighting fire with fire -- it has a significant risk of contributing to the problem, but in the case of tuberculosis, once a person has an active infection, you pretty much have to quarantine them and treat the hell out of them before they can be allowed to have anything like a normal life again. A better long-term strategy for eradication of TB is vaccination, of course. And there's a cool new weapon against TB being tested. It works in mice, anyway; it's a sort of therapeutic vaccine and may ultimately replace antibiotic treatment of TB.
See, that's what I'd like to see happening with Lyme, if chronic Lyme is a real condition. Active research not merely to find justifications for using long-term antibiotics but to actually understand what these people are suffering, why they're suffering, and better ways of attacking it. Because frankly, if you need to be on antibiotics for years, the therapy is suboptimal at best even if it does work. But unless the promoters of chronic Lyme show a little basic curiosity and start seriously studying the condition (again, rather than just justifying their treatment and diagnosis methods), that's never going to happen.
"Active research not merely to find justifications for using long-term antibiotics but to actually understand what these people are suffering, why they're suffering, and better ways of attacking it."
You can't honestly think that people with chronic lyme disease actually WANT to be on high dose long term antibiotics. I have met a few people suffering from this nightmare of an illness, and none of them enjoyed the monthly long distance doctor visits, high medical expenses, antibiotic side effects, or any of the problems that come with treatment, so its helping or they wouldn't do it. Its obviously a far better alternative considering how disabling the infection is. I think the number one cause of death in lyme disease patients is suicide, which might give you some insight as to how much they are suffering. A few months ago there was yet another story about a TX couple that both had lyme disease, couldn't get treatment and committed double suicide.
http://www.ocala.com/article/20100709/ARTICLES/100709703/1005/sports01?…
If death is a reasonable alternative, do you think lyme disease sufferers care about the relatively low risk of long term antibiotics? I really can't imagine a more hellish existence than a relentless, relapsing brain infection.
Kwackmeister:
I had a relative also commit suicide recently. She self-diagnosed herself with all sorts of disorders, and had them reinforced each time she went to some alternative health practitioner.
Well, except for the homeopath... she thought his expensive remedies were worthless. Though she went to him just because the treatment that was working took too much work.
A few months earlier she had a psychotic break and ended up in the county psyche ward. They made her actually get up and go for walks, got her into talk therapy and prescribed her medication that actually worked (they diagnosed her as bi-polar). So they released her after six weeks, and she was the happiest and healthiest she had ever been.
Unfortunately she did not want to keep up the exercise routine, she decided real psychiatrists were worthless and found a homeopath who would listen to her. By the time she realized that guy was full of absolutely nothing, she was back in a down spiral of pain and depression. So she is now gone.
Really, I sympathize with you all greatly. I have seen how the illness can take hold and the denial takes on many forms. First it is an allergy of some sort, then it is an anti-immune dysfunction and then it is something else (hard to declare a tick infection in an area with no ticks!). But, really, it is that all to common problem that has set-in stigma, which prevents getting real help.
Come on! Even though it may be "all in the mind", depression causes real pain and actually makes you feel sick (crap! I felt it yesterday when no technology worked for me, and what could go wrong did!, but I got better). That is because it is a real disease, and there are real treatments. Even though they may not always work, they are better than getting fantastical treatments for fantasy ailments. I've been through it, and sometimes I still experience it.
While I hated it when I was an adolescent, I thank my dad and step-mother for the psychiatric treatment I received after my mother's death and my dad remarrying (it seemed soon, but he did it partially to prevent an ugly custody battle with my mother's relatives --- and it saved me from ending up in a little mountain town in the way off boondocks! ... plus my step-mother was a saving grace in so many ways --- Calli Arcale, you would have loved her!).
My relative and I had something in common, we both lost a parent to death at a crucial part of our childhood, early puberty. While her mother was advised to get her children psychiatric counseling, she decided against it due to the "stigma." At her daughter's funeral she told me she wished she had followed through, especially after knowing what I had been through. Just this past week I broke down crying when I spoke of her. Sigh.
All of you Lyme, Morgellons and other non-specific disease sufferers: go see a qualified psychiatrist. Please actually listen to what the doctor says. I know where you have been, and I know where you will up to if you ignore reality. Please, please, please find a good psychiatrist.
And please stop creating antibiotic resistant bacteria.
Question:
Does anxiety and depression cause severe hypercoagulation?
Does it cause global cerebral hypoperfusion?
Does it cause one to be able to obtain physical disability because their bicycle ergometer test with VO2 analysis was so poor?
Does it cause an abnormal EKG?
Does it cause SVTs. The kind where your heart rate is 90 bpm one minute, 200 bpm the next minute, and then back to 90 bpm almost instantly. And again.
Does it cause someone who is their twenties who was previously healthy (exercised every day) unable to walk up the stairs?
Does it cause seizures?
Does it cause POTS?
Does it cause orthostatic intolerance?
Does it cause elevated C3A/C4A?
Does it cause a complete absence of HGH pre and post exercise?
Does it cause cortisol to drop in response to exercise?
Are panic attacks (no, not anxiety feelings, attacks) that last many hours to days normal when it comes to an anxiety disorder?
Does it cause strange headaches so bad that there is no way to describe to to someone who never felt it before (hint: pain is much greater than a migraine and there is nothing that can relieve it besides waiting a few days)?
Does it cause low 25-hydroxy-vitamin D and elevated 1,25-dihydroxy-vitamin D?
Does it cause a low WBC count?
Does it cause severe Zinc deficiency?
Does it cause subsets of NK cells to come close to 0?
Does it cause you to shake and not be able to get out of bed for a week following antibiotics, and suddenly you can? (Oh wait, this is bipolar, right)
Get back to me doc. I need to know if this is all in the head. You wouldn't be the first one to say so. In fact, you would be the 27th.
The doctors and people that say it's not in my head are my psychiatrist, therapist, and psych evaluators in the ER. I am so confused! They tell me to go to the neuro, and the neuro tells me to go back to the psychiatrist. Help, I am stuck in an infinite loop! Why do the MDs who don't even physically evaluate me, let alone physically touch me say it's in my head? I am starting to believe that a lot of it is in my head, and with the medical expertise here, I am wondering the best way to get all the fibrin out and my vessels to help the infection can clear.
I wasn't too impressed with Heparin, but Boluoke Lumbrokinase seems to do what its intended to do. Perhaps it's a bit too much though as the reactions are a bit intense when fibrin starts clearing.
Any doctors out their with egos want to tell me what to do? The only problem you will find is that my ego is bigger than yours. This probably won't go in my chart, as you wouldn't want to take a shot to your ego, so perhaps you can label me as a difficult and non-compliant patient and call it a day?
Yes, I am a genuine ass-hole.
Thanks for the training.
To Chris and the rest of the arrogant know it all "doctors" on this board including the great and powerful Orac ... you are as clueless about Chronic Lyme disease as the flat earth society once was about the shape of the earth. You think that people who didn't go to medical school aren't as capable of reading and understanding the science as you are? Bite me.
I don't just feel sorry for your pettiness, but for the people who depend on you for answers to illnesses whose cause and cure may be a mystery.
It is sickening to read the nastiness and garbage you all post in the comments here. I'm sorry to have added to it, but when in Rome...
TheAnalyst, define the following:
hypercoagulation
global cerebral hypoperfusion
POTS
orthostatic intolerance
elevated C3A/C4A
low 25-hydroxy-vitamin D and elevated 1,25-dihydroxy-vitamin D
And if you have one cause of seizures, I'd sure like to know what that is! So tell us, what causes seizures in a two day old infant?
Oh, wait... you only listed a series of questions. You don't care about any answers!
Steve G, dude, I am not a doctor but just a lowly engineer. But, like Orac (a real doctor who teaches at a real medical school), I like real evidence. How do we know if you have any evidence unless you tell us what it is?
Steve,
If people are clueless about chronic lyme disease, then educate them. Don't make your pissy little douchebag rant. Show us some EVIDENCE that it actually fucking exists or don't bother wasting internets on the stupid shit you typed. You could have supported your position but instead chose to bitch and act like a child.
And you wonder why no one thinks CLD is real...all of the supporters just fucking whine like you (and weintraub) or talk about symptoms and misery they are experiencing.
Neither helps your position.
Now, I think it would be interesting to see how many people who disagree with what Orac said could actually identify the stance he is making.
Probably not. Since the mid 1990s the alt med providers have mounted what appears to be a coordinated effort to change medical practice laws throughout the US. "Integrative medicine" is no longer actionable in most states. A doctor need only claim that some questionable treatment is "integrative," and be able to point to a few other doctors doing the same thing.
The push back against integrative medicine is tiny and ineffective. In 2005 the Institute of Medicine advised congress to incorporate "integrative medicine" into medical curricula "at all levels." All our med schools are now teaching woo. The justification: this is what patients want.
So it's up to the public to convince doctors AND congress that they actually *want* their medicine to be science based.
Sadly, the public seem to like one-stop shopping. It's convenient to get their quackery at their local hospital rather than from the old downtown storefronts or the ads at the back of Popular Mechanics.
And thus "integrative medicine." Ah well. Enjoy your Reiki, vitamins, and Dianetics, America!
This isn't about you.
In science it doesn't matter whether or not a researcher is an asshole or even dead. What matters is evidence subjected to tests of corroboration, falsification, logic, and parsimony.
Rants and anecdotes may fool Joe Sixpack. But they just make you look stupid here.
@155
The more difficult and expensive the treatment, the greater the delusion of efficacy. Ergo, Scientology.
"John S:
Does everyone have Lyme who thinks they have it, I don't think so. Are their people praying on the desperate, who can't get adequate care due to the current guidelines, yes. But the horrible state of human affairs surrounding this disease has no relevance as to whether it exists.
I don't think any compassionate person would deny that the people diagnosed with chronic Lyme disease are actually suffering. But the point about shoving an unproven diagnosis down a person's throat is that if you are diagnosed with the *wrong* thing, it stops you finding a treatment -- or, at the very least, stops society from learning more about the disease and being able to treat it more effectively.
I don't doubt your story, but given how common tick bites are, it seems likely that an association could be found regardless of whether or not the tick bite actually caused the condition. Thus, anecdotes are not that useful in understanding the disease. Anecdotes don't tell us cause and effect. They show us why we should care, and they are important for that reason, but they do not tell us what is true. It takes a lot of carefully collected data to do that. How do you know the antibiotics are really responsible for your improved state of health? Remember, coincidences do happen -- during the summers I take Pulmicort, but is it really making my asthma better, or is the variable course of my asthma just being kind to me right now? I have anecdotes galore, but it's the clinical trial data that convinces me the Pulmicort really is working and it's not just my own desire for it to work making it seem as though it is.
Indeed, one day the truth may come out. But it'll have a hard time coming out when the science of Lyme disease is decided by politicians, and when those most invested in chronic Lyme disease would rather spend their effort treating patients than finding out whether or not they're actually doing the right thing for their patients. Too many of the positive studies I have seen have been enterprises in proving a point rather than testing an hypothesis; science can't be fair or unbiased or *truthful* if it does not entertain equally the possibility of being wrong."
Well, when I stop the antibiotics the symptoms return or worsen and many others have stories similar to mine, so my opinion is that Chronic Lyme exists. It is undeniable that continuing symptoms are reported among the minority of Lyme patients, the question is why?
As I said before there is evidence that Borrelia Burgdoferi may be surving antibiotics as persister cells in biofilms as shown in these two papers:
http://www.empirestatelymediseaseassociation.org/Persistence/Stephen_W_…
http://www.microbemagazine.org/index.php/09-2010-home/2848-persister-ce…
There is a possibility that the disease is caused by a living bacteria that is hard to treat with conventional antibiotics, and anyone categorically denying that is just being ignorant.
Bacteria are far more complex than we envisioned and more research is needed into this aspect of the disease.
As for those who argue about resistance, when we stop giving out doxycyline long term for acne and dumping it on livestock in huge quantities I think their argument will have more force. In the meantime, I will continue to do what works for me, for whatever the reason it works, and hope that science can catch up to me.
Kwackmeister @ 155:
You see my point, then -- long-term antibiotic treatment is suboptimal even if it does work. Yet the practitioners who treat chronic Lyme disease seem largely uninterested in exploring other options, except perhaps other antibiotics. They lack the curiosity to investigate other options. And I don't mean "trying things out on their patients until something works", which frankly is how they arrived at the long-term antibiotic treatment in the first place. I mean doing actual scientific investigation. Why has long-term antibiotic treatment in chronic Lyme sufferers still not been properly studied? Surely there are enough people undergoing the treatment that we could study their experiences properly? Studies have been done, but not enough. After decades of chronic Lyme treatment, the jury should not still be out.
TheAnalyst @ 157:
You'd be surprised what depression can cause. Real, chronic, clinical depression, not just being down in the dumps. It *does* cause physical symptoms. Being "all in the head" isn't neccesarily a dismissal of symptoms, because it's easy to underestimate just how important the stuff in your head really is. You don't just use it for thinking, and a problem existing between the ears does not mean you're making it up, are a wimp, or are crazy. I have only my personal experience with it to go on, so I can't address all of the symptoms in your list; I just don't know enough about them. But it definitely does affect cortisol levels, panic attacks can last days, heart rates can fluctuate dramatically (though I think 90 to 200 would be unusual -- note, however, that it is possible for a person to have multiple conditions, for instance, depression plus a major cardiovascular problem), lethargy, and yes, it can cause a low WBC -- in fact, this is the mechanism whereby depression and stress lead to an increased risk of infection. The immune system becomes suppressed.
I have several conditions. (Don't rule out the possibility of multiple conditions; it is possible not all of your symptoms have the same cause.) One is a tremor. This is unrelated to the depression, as far as I knowo. My hands shake. This problem is *literally* all in my head. Although it is only observed in the behavior of my hands, there is nothing wrong with the muscles or the nerves leading to them. The problem is in the feedback loop that my brain uses to keep my unsupported hand steady. And the harder I try to keep my hand steady, the worse it gets. It's sort of like pilot-induced oscillation. Actually, everybody's hands shake a little, but it's usually not perceptible. It's obvious in me, and if I'm nervous it gets worse. Beta blockers treat it, but I can't use those as they'd compromise the effectiveness of my rescue inhaler. (I also have asthma.)
So "all in the head" isn't neccesarily an epithet. It is an entirely legitimate place for a disorder to occur, and it doesn't mean it isn't debilitating. Consider Parkison's Disease. This condition occurs entirely within the skull, but it can be severely debilitating. And regrettably, despite a tremendous amount of research, it remains very difficult to effectively treat. There are a number of therapies, but many have unpleasant side effects and provide only temporary relief. There is still nothing which actually halts the progression of the disease.
Sadly, central nervous system disorders still have a huge negative stigma. Take your own case; you chafe at the very idea of being told that something is all in your head. It can't be! That's impossible, and insulting to boot! Are you saying I'm making it up? This is an entirely understandable reaction. It's society that makes it insulting to be told you have a CNS disorder. Perhaps on some level, it's because we deeply want to believe that our perceptions of the world are true, and being told they aren't is too disturbing for us to contemplate. Our culture also holds strongly to the idea of a mind-body dichotomy -- ironically, especially those who promote holistic medicine, I've found. But there isn't a dichotomy, and the mind and body have to be understood as a system.
It doesn't seem implausible to me that a true, real chronic Lyme disease, actually caused by Borellia and other tick-borne spirochetes, could actually be all in the head as well. We know the spirochete can damage tissues; if it got into the brain, it would do bad things, and the impact could last long after the spirochete itself was gone. This is probably a complex thing.
Not that you were denying the disease Calli Arcale, I was just restating my position on the matter.
Do you mind if I call Mr. (or Mrs. Tit) and initiate some ad hominem attacks?
Anyway, you don't know crap.
Perhaps the psychiatric effects helped give me me my super ego, but that's not my point.
My point is, I own a dark field microscope. I own stains. I have been to University tick-borne disease that were interested in me enough to run every proprietary PCR test they have. Don't believe me? That's your problem. Unfortunately, I got really ill, and riding in a car was torturous, so we didn't really get very far trying to identify anything. Guess what was seen with microscopy? Keep guessing.
Q: Can I find anything anymore?
A: No
Q: Did I just have Lyme?
A: No, I had RMSF (previous exposure thank god). My immune system was strong enough to thwart off this one. I have other (opportunistic?) pathogens, but they remain unidentified. They can be seen (well, not anymore) with a wright's stain.
Q: Am I still ill?
A: Not as much, but I am one of those cases that gets monthly flares (yes, repeated herxheimer reactions that have been similar since day 1), and these can put me in bed for a few days. Nope, no vagina here.
But let me tell you, neurological issues (brain injury) aren't the quickest to heal.
Q: Were antibiotics easy?
A: Nope. I curled in a ball of fear for a year after 4 days of doxycycline. I was very sick, and didn't realize a herxheimer effect can mimic dying and put me in the hospital. So, yes, I saw the dangers of antibiotics first hand. Man were they scary. Side effect? Nope, I can take it easily now. The only side effect is that it can hurt my stomach and they kill my friendly flora. Who decided to put take on an empty stomach on all prescriptions? That's a prescription for gastritis.
Q: Do I act like this around doctors in real life?
A: Generally no. I mock them behind their back. However, one time I had severe chest pain, and the uneducated doctor at the urgent care doc asked me if I was just seeking pain meds. Man that pissed me off. Then he wanted to inject something in my ass, and I told the wanker off and insulted him to the point that his eyes were tearing up. Yes, in some ways, I felt a bit better after this. Apparently he didn't like his medical abilities (or lack-there-of) questioned.
You know I could go around spamming peer-reviewed junk like the other guy, but after reading all (ok, my ego again - most) of them, I noticed a trend. Those who received grants by the NIH clearly had a biased (or should I say different?) tone. It was a melody one couldn't forget once one is trained to hear it.
In my opinion, your best source as of now is probably lecture notes from a recent 4 part lecture by Tom Grier. Don't worry, I won't post a link since there is no peer-reviewed source that publishes his lecture notes.
If I posted peer reviewed stuff, it would be veterinarian medical journals since they surprisingly lack this bias that surrounds human medical journals. Now, I am sure MD's (or fake MD's?) here wouldn't want to read medical journals about puppies and kittens. I am sure you'll be happy to know that I'll leave my post free of hyperlinks.
Tit and friends: Feel free to leave advice for me. I already see a therapist and psychiatrist, so that trick won't work. You also won't be able to insult me by telling me to take some class of medication. Believe me, I tried them all, and I wanted anything to work. The only pharma stuff that works the addictive stuff. Strange enough, 25 mg/cc of B12 (methylcobalamin not the cyano junk) seems to be my "drug" of choice. I am nearly in a state of serenity when I take that stuff.
-TheAnalyst (a.k.a. FakeEgo)
John S:
I don't believe my opinion about antibiotic resistence has to be kept to myself until the agricultural industry stops using antibiotics indiscriminately. On the contrary; I think it means the argument needs to be made more loudly so they can hear too. I'm strongly against the use of routine antibiotics in healthy livestock. I think it's pointless, wasteful, and threatens public health. Acne treatment sometimes justifies the use of antibiotics, but I'd be very cautious of taking long-term antibiotics for it if the first course didn't do the job; the question must be entertained whether or not there is actually bacterial involvement. (Sometimes there is, but often there isn't.)
It would also be worth exploring a) whether or not there is statistically significant improvement in a large group of chronic Lyme patients using antibiotics (I'm not saying they're not working for you, but if they don't really work for most Lyme patients, then there may be something else going on here) and b) if they work in a statistically significant number of patients, why? Is it the way we expect antibiotics to work, or some other way? After all, drugs don't have just the one effect.
You mentioned biofilms. Biofilms are a tricky and weird thing; the behavior of bacteria changes when they form a biofilm. I'm just a software engineer, but I think biofilms are fascinating. Revisiting Yellowstone a few years ago really cemented that impression for me. Obviously those biofilms are very different from any that would form in the body, but they're amazing all the same.
@Calli Arcale
I have CNS problems. I have an abnormal HPA axis.
I don't feel CNS disorders have a negative stigma. I don't feel embarrassed telling anyone. In fact, a very strange side effect of this disease is that I don't really get embarrassed at all. This comes from someone who was shy and used to keep private things private.
I also generally feel apathetic towards others and whatever may ail them (I do get annoyed when I hear people complain of minor aches and pains). While obviously not true, I do feel that nobody has it as bad as me.
Even though I don't feel bad about my last post, I'll apologize anyway. I got carried away.
The Analyst:
One more, then I gotta go work.
Oh man, that royally sucks.
If I hadn't fallen madly in love with computers, I would've gone into pharmacology. It's fascinating, and manufacturers have to do all sorts of clever things to make a drug that can be taken orally. It has to survive the hostile environment of the stomach and be absorbed at the desired rate. It may even require metabolism by the liver before it can be effective. Some need direct exposure to stomach acids to dissolve properly; these should be taken on an empty stomach, as food will tend to buffer the acid. Some need to be protected as much as possible from the acid; these need to be taken on a full stomach. Most drugs, it doesn't matter. If you haven't already, you should ask your pharmacist for more advice; there may be ways to limit the damage, and there are also other drugs that can be taken that are pretty benign but reduce the damage to your digestive tract.
The friendly flora aren't in your stomach, by the way. They're further down, and unfortunately, what you eat with the medicine won't have much affect when it comes to protecting them. It's kind of unavoidable. My biggest frustration with those is that although probiotics may be effective, the stuff you can actually buy in the store is minimally regulated; this is probably why it's never worked for me. :-(
If that were true, then it would be very easy to demonstrate it scientifically. Yet nobody ever has, and the attempts thus far have failed. One suspects that the reason is the placebo effect; once the patients no longer know whether they're getting antibiotics or not, the effect disappears.
"John S:
As for those who argue about resistance, when we stop giving out doxycyline long term for acne and dumping it on livestock in huge quantities I think their argument will have more force. In the meantime, I will continue to do what works for me, for whatever the reason it works, and hope that science can catch up to me.
I don't believe my opinion about antibiotic resistence has to be kept to myself until the agricultural industry stops using antibiotics indiscriminately. On the contrary; I think it means the argument needs to be made more loudly so they can hear too. I'm strongly against the use of routine antibiotics in healthy livestock. I think it's pointless, wasteful, and threatens public health. Acne treatment sometimes justifies the use of antibiotics, but I'd be very cautious of taking long-term antibiotics for it if the first course didn't do the job; the question must be entertained whether or not there is actually bacterial involvement. (Sometimes there is, but often there isn't.)
It would also be worth exploring a) whether or not there is statistically significant improvement in a large group of chronic Lyme patients using antibiotics (I'm not saying they're not working for you, but if they don't really work for most Lyme patients, then there may be something else going on here) and b) if they work in a statistically significant number of patients, why? Is it the way we expect antibiotics to work, or some other way? After all, drugs don't have just the one effect.
You mentioned biofilms. Biofilms are a tricky and weird thing; the behavior of bacteria changes when they form a biofilm. I'm just a software engineer, but I think biofilms are fascinating. Revisiting Yellowstone a few years ago really cemented that impression for me. Obviously those biofilms are very different from any that would form in the body, but they're amazing all the same."
Well, I agree with you. But I am in the quandary of having a suspected disease and have found that the antibiotics work for me. So, I find it hard to stomach when someone takes doxycyline for acne for years and then doctors tell me I can't take it.
Why do they work for me? I can't tell you. But some people have said it could be the anti-inflammatory aspect. I don't think this is true do to the wide spectrum of antibiotics that I have been on that have worked and aren't known for those properties.
But yes, it is possible that the antibiotics could be having a beneficial effect without killing the bacteria. But my personal opinion is that it is continuing infection that is causing this disease in a minority of people and as far as I am concerned not enough has been done to convince me I am incorrect.
TheAnalyst, it's not clear from your posts, but have you ever been actually diagnosed with a Lyme infection? To me, all this CLD is becoming just another CFS type syndrome, where people are desperate to find an identifiable agent that might or might not exist. The problem with calling it Lyme is that the agent is known and scientifically identifiable. So, no agent, no Lyme. Thousands of people have claimed CDL, and none have been shown to have active infections. At some point there has to be the realization its not Lyme.
Actually, you could even argue that "whatever the agent is that causes CLD type symptoms, it's helped by long term antibiotics". We might be completely missing what's causing it because we're so fixated on the falsified Lyme hypothesis.
Well, when I stop the antibiotics the symptoms return or worsen and many others have stories similar to mine, so my opinion is that Chronic Lyme exists.
If that were true, then it would be very easy to demonstrate it scientifically. Yet nobody ever has, and the attempts thus far have failed. One suspects that the reason is the placebo effect; once the patients no longer know whether they're getting antibiotics or not, the effect disappears.
Well, they said that about minocycline used for arthritis, but it has since been proven that Minocycline does work, NIH MIRA Study.
Anyway, if this disease sequesters itself and lives on in biofilms it may not be easy to show.
I doubt it is a placebo affect I am experiencing. Pain in the joints is hard to mentally fabricate. When I was on IV all my joint pain except for my feet went away. After 5 months I stopped the IV rocephin and in a matter of weeks it all started to come back. I went on orals and doubled the dose and alot of it went away. I've gone through this cycle 3 or so times now, but only once off IV, the other times were when I lowered the oral dose. So, even though you have a valid hyphothesis, I disagree with you in my case.
I don't know if your question is to me Mu.
But in a previous post I said:
I crushed a tick on my thigh and a month and half later I had a bullseye rash, positive Elisa, positive Western Blot and then they told me after 3 weeks of antibiotics that I would be fine. When I wasn't, they told to ignore the symptoms and I listened.
After a few months of decline I found out on my own that antibiotics help. I sought them and I found them.
That has exactly zero relevance to the question, as the conditions aren't even related. You might as well say "casts work for broken legs, therefore casts work for cancer."
If the effects are as dramatic and widespread as you claim, it would be near-trivial to prove that they are real. Use of long-term antibiotics without doing the work to show that they really do actually work is grossly irresponsible of whatever doctor you're getting them from.
There are innumerable other cases of treatments which many, many people swore worked but turned out to just be placebos.
Not at all. You're claiming symptomatic relief; the mechanism of action, or the nature of the disease, are not needed to test that. Heck, all it would really take would be giving placebos vs. antibiotics (double-blinded) and seeing whether the subjects could reliably tell which one they were getting.
Not really, but irrelevant. We're not talking about source of pain, but relief from it. And relief from pain is VERY easy to get from a placebo effect.
Not a single thing you've said provides ANY reason to doubt that it's a placebo effect. The simple fact that you knew when you were and were not on antibiotics renders the observations incapable of answering the question.
Probably the biggest problem is that whatever science can be done to solve the problem of Chronic Lyme Disease is probably not something that's going to benefit TheAnalyst or John S; these things tend to take time. Consider Parkinson's Disease; Michael J Fox is agitating for increased awareness and research (successfully; he's been a good advocate) but he knows it is unlikely that science will find anything to help him before the condition is so far advanced that there's really nothing left to do. This tends to make conversations like this one very frustrating for sufferers.
Regarding pain in the joints -- this is actually a common symptom with clinical depression. I speak from experience there; when I'm depressed, I often experience physical pain, phantom aches in the joints and muscles, particularly the knees and lower back and a point right between my shoulderblades. I am not unusual in this; one depression-awareness campaign recently featured ads saying "Depression *Hurts*" to make people aware of this aspect of the condition. If depressed person says they hurt, they're not just saying that because life sucks; they actually *do* hurt.
That's not to say that you're depressed. You don't sound like a depressed person (though also from experience, I can attest that it isn't something you can usually tell via the Internet) I'm just bringing that up as an example that pain isn't always what we think it is and can be related to our mood and consequently vulnerable to the placebo effect.
Well, lets look at what Rocephin does.
First of all, lets look at the antibiotic properties. It's a cephalosporin. It's a beta-lactam antibiotic. They inhibit cell wall synthesis by the organism.
So what happens when the organism decides to go cell wall deficient? That's right, Rocephin can no longer kill them, and the immune system can no longer recognize them. So, essentially Rocephin becomes a bacteriostatic unless the spirochete change into it's normal form (perhaps for feeding or reproduction).
So let's assume the crazy idea that infection can be persistent in certain groups of people. Perhaps something is wrong with their immune system, I don't know.
If the immune system is unable to keep the load down, and persisters come out of their cell wall deficient forms and allowed to reproduce, what would be the result? Most likely disease.
Also keep in mind that Rocephin inhibits glutmate. It is believed that those with an injured brain often suffer glutamate toxicity. The glutamate inhibition could obviously make someone feel.
So, in other words, Rocephin has a couple modes of action. It is an antibiotic/bacteriostatic, and it inhibitis glutamate. If someone benefits from the glutamate inhibition, but not from the anitbacterial properties, it's not exactly a placebo effect, is it?
And since Rocephin causes cell wall deficient persisters, it would be reasonable to believe that it's possible that disease could reemerge.
Did you know that the patients that were on Rocephin were much more likely to know that they were receiving the drug and not the placebo? Steere et al. seem to believe that the studies must have not been properly double-blinded, but he fails to mention that Rocephin promotes cell wall deficient persisters, and fails to mention the non-antibacterial properties of Rocephin.
His research is flawed. He will never admit it, but he knows it. He is not a stupid man. In fact, he is very bright, but perhaps corrupted. Ask Willy Burgdorferi (the man who discovered Lyme disease) what he thinks. In his words, he says research is politically tainted and needs to be started from scratch by different researchers and scientists. He claims it's about the money. Do you think Willy would be a trustworthy source?
Well, they said that about minocycline used for arthritis, but it has since been proven that Minocycline does work, NIH MIRA Study.
That has exactly zero relevance to the question, as the conditions aren't even related. You might as well say "casts work for broken legs, therefore casts work for cancer."
I don't think so. Doctors claimed that minocycline didn't work for arthritis and it could be a placebo effect. Well it wasn't a placebo effect. It has total revelance.
Nice how everyone can tell me that what I experience is impossible, but how many times in medicine have the naysayers been wrong.
Well, I agree with you that this may take some time to unravel, maybe after I am gone. But the problem isn't going to go away. Something in ticks is causing these problems in a small group of people.
As for the placebo effect. You can infer all that you like it is one, and it is possible, but it is just as possible that it is persisting infection. I know my own body, so I disagree.
No offense to you, but I think the goal of the campaign is to sell Cymbalta.
Special K tells me I can drop a jean size in just 2 weeks.
Activia claims (or claimed?) that it could help regulate my digestive system in just 2 weeks?
Is advertising where we get our information nowadays? I guess so since that's the goal of advertising. It does make me a bit sad though.
I had major depression when I was 17. I was put on Cymbalta. They added Deplin and suddenly I had more energy, and I was feeling better. I discontinued Cymbalta cold-turkey against the advice of my psychiatrist and continued to take Deplin (folate). Little did I know, I wasn't Cymbalta deficient, but I was probably deficient of L-Methylfolate or I was a undermethylated. The depression spontaneously disappeared, and I no longer needed to see a psychiatrist. I was happy as a clam.
I meant to say that Willy Burgoderferi believes that research is politically tainted and serology needs to be started from scratch by different scientists and researchers.
Sorry about that. Didn't mean to get the facts wrong.
Perhaps.
But did you know that Michael J Fox had Lyme disease shortly before his Parkinson's diagnosis.
Lyme-induced Parkinson's? I wonder.
Maybe it's difficult, and not always possible, but there have been people that have completely got rid of Parkinsonian symptoms after prolonged antibiotic therapy.
As far as I know, he hasn't tried this. At least he hasn't publicly claimed so. Perhaps it's too late now, but the question remains: Could have he got better if he went to those evil money hungry Quack doctors to get a Quack diagnosis? George W. Bush took that approach after he wasn't happy at the Cooper Clinic.
@TheAnalyst
Citation needed. If true, the next question is, did they actual have Parkinson's disease or was it something else?
I'm a little late to this party, but this snippet from Pammy-Pam just warmed the cockles of my heart:
Would that be Discover, home of that paragon of journalistic integrity called The Intersection?
*Wanders off snickering*
That would be the Discover magazine that this piece of idiocy appeared, which is why I canceled my subscription.
I am not interested in searching for links right now, but perhaps you are right.
Maybe what I am referring to is Parkinsonian-like tremors and not Parkinson's itself.
I don't know if I can answer your question, but thanks for your input.
TheAnalyst:
Just a note for the future: when you make a claim be prepared to provide the evidence.
Ah, the classic "but they were wrong before" gambit. Trouble is, your argument means nothing. The burden of proof is not on me to prove that it CAN'T work (I freely admit that the possibility exists) but on those who claim it DOES to demonstrate that in fact that is the case.
You've still not provided one whit of evidence to the contrary. So still utterly irrelevant.
Who has said it's impossible? I certainly haven't. I've said that it hasn't been demonstrated to be true.
@ TheAnalyst: Bloviating about possible mechanisms of action doesn't constitute evidence, either.
I will repeat myself. IF these claims were true, they would be near-trivial to prove. Yet, nobody has managed to do so. And it would greatly advance the cause being advocated to accomplish that. It's difficult to see any other possibilities than (a) those making the claims have no interest in finding out whether they're actually true, or (b) the claims are not, in fact, true, so attempts to show that they are fail.
I say:
Nice how everyone can tell me that what I experience is impossible, but how many times in medicine have the naysayers been wrong.
You say:
Who has said it's impossible? I certainly haven't. I've said that it hasn't been demonstrated to be true.
Then you say:
I will repeat myself. IF these claims were true, they would be near-trivial to prove. Yet, nobody has managed to do so. And it would greatly advance the cause being advocated to accomplish that. It's difficult to see any other possibilities than (a) those making the claims have no interest in finding out whether they're actually true, or (b) the claims are not, in fact, true, so attempts to show that they are fail.
Well obviously you are saying they are impossible if they were so trivial to prove and they haven't been and I'm claiming them.
You have very warped logic my friend. And obviously it is not so easy to prove. Certainly beyond my resources. But hopefully microbiologists will prove it one day.
Ugh. Looks like Phil Plait has gone all Mooney (i.e. soft, mendacious and weasely) as well:
What a disappointment.
Oh well. It does mean I don't have to give Discover any more hits.
No, he did not. Just that they haven't been proven. You're just flailing and whining now... it's very unbecoming.
I say:
I don't think so. Doctors claimed that minocycline didn't work for arthritis and it could be a placebo effect. Well it wasn't a placebo effect. It has total revelance.
You say:
Ah, the classic "but they were wrong before" gambit. Trouble is, your argument means nothing. The burden of proof is not on me to prove that it CAN'T work (I freely admit that the possibility exists) but on those who claim it DOES to demonstrate that in fact that is the case.
You've still not provided one whit of evidence to the contrary. So still utterly irrelevant.
Well I say:
Once a again warped logic. My point was that not everything
asserted in the past to a placebo affect really was one, as the MIRA NIH trials had shown. That was my only point.
Does it prove that my condition is not a placebo effect, no. But it does show that even with the consensus thinking otherwise, sometimes a purported placebo effect isn't.
Nice sophistry, my friend. Keep it up.
Well obviously you are saying they are impossible if they were so trivial to prove and they haven't been and I'm claiming them.
No, he did not. Just that they haven't been proven. You're just flailing and whining now... it's very unbecoming.
I laugh at your attempt to goad me.
Well, enough with this now anyway.
Merry Christmas
John S, when you come back next time, could you work on making your quotes more legible. You don't even have to use HTML, but just give the person's name and use quotes. Example: stuv.openid: "quote quote quote".
Brave Sir John ran away.
Bravely ran away away.
When danger reared it's ugly head,
He bravely turned his tail and fled.
Yes, brave Sir John turned about
And gallantly he chickened out.
****Bravely**** taking to his feet,
He beat a very brave retreat.
Bravest of the braaaave, Sir John!
@John S
Saying that X has not been proven yet does not equal saying that X is impossible.
Saying that X, if true, should be easy to prove, yet it has not been, does not equal saying that X is impossible.
Pointing out that "they were wrong before" does absolutely nothing to advance an argument that "X is true". All it means is that people were wrong about something before. This is nothing new, and no one here will deny that people were wrong before and could be again. All that was pointed out was that making that statement is kinda pointless, since it does not advance the argument one way or the other. "They were wrong before" does not necessarily mean that they are wrong this time. One could just as easily say, "They were right before." It still means nothing.
If you want to try to convince people that you are (or might be) right, then you need to provide actual evidence, not philosophy. Articles from peer-reviewed journals is a good start. Magazine or newspaper articles, not so much.
No, I'm saying that there are multiple explanations. And that you haven't provided any evidence whatsoever that the one you insist is right, actually is.
You personally? Probably not. But could it be done for much less than the cost of the antibiotics being used without evidence for their efficacy? Almost certainly.
And it is a meaningless, irrelevant point. You might as well claim that sperm whales were hunted almost to extinction, therefore iPods were hunted almost to extinction. There is simply no connection between the two such that the former may be taken as evidence for the latter.
The burden of proof is on those who claim they know what the answer is, particularly when their actions put everyone else at risk without any demonstrated benefit to weigh against that.
"You keep using that word. I do not think it means what you think it means."
TheAnalyst @ 189:
The campaign I'm thinking of was not for Cymbalta; it was from a depression-awareness organization. I wouldn't be too surprised if a pharmaceutical company latched onto it, though. They tend to do that sort of thing.
It is true, however, that depression really does cause physical pain, and that's my point. I share your disdain for pharmaceutical companies' advertising, but it's not really relevant to the point. I'm not saying you have or ever had depression; I'm just talking about plausibility here. You didn't seem think it was possible for depression to cause physical pain, and I'm here to tell you it actually does, and that this is in fact typical.
(The hell of it is, depression can cause pain and pain can cause depression -- hop aboard the downward spiral, right there.)
One thing the CLD crowd seems to not realize is that CLD skeptics are not trying to say people arenât suffering and donât have real problems.
What we are saying is that they (probably) donât have a condition of Chronic Lyme Disease. That fact that we canât say what they are suffering from doesnât negate the likely fact that what they have isnât CLD.
"1 milyon Euro."
Cool! Can you send it in small bills?
Probably about the same number of times that the Alties have been right.
Concerned scientist, wah, wah wah, "pharma shill accusations." " No scientific proof that CCVSI causes "MS.""
My friend, a pharmacist, and her husband (head of radiology in this region) have been very interested to hear about my friend's success with her "liberation" surgery. She went to a doc in the US who is following a Kuwait doctor's protocol focusing more on the valves (enlarging them) rather than simply doing the ballooning. She is doing fantastically well. Walking (previously using wheelchair 90% of time). You better get with the program because there has been way too much success to knock this, though admittedly, many who are just getting ballooned are needing to get re-ballooned. The valve cllosure seems to be the more important thing. pharma / MS Societies are still trying to fight this by not studying it scientifically. But the dam has burst. Good luck ( and good conscience) trying to stop it.
Kıyamet günü, teraziler kurulur, namaz ehli getirilir, karÅılıÄını tam alırlar. Oruç tutanlar getirilir karÅılıÄını tam alırlar. Zekat ehli getirilir onlar da karÅılıÄın tam alırlar. Hac ehli getirilir onlar da karÅılıÄını tam alırlar. Belaya, musibete uÄrayanlar getirilir onlar için terazi kurulmaz, ücretleri, mükafatları tartısız bol bol verilir. Bunlara verilen sevapların büyüklüÄünü görenler, (KeÅke bizim de dünyada vücutlarımız makaslarla doÄransaydı da biz de böyle büyük nimetlere kavuÅsaydık) derler
Suppose for the sake of argument that I came up with a hypothesis that getting hit very hard in the back of the head with a baseball bat was a cure for MS.
Would the mere fact that I had concocted such a hypothesis mean that "pharma", or "MS Societies", or indeed anyone at all, was obligated to study it scientifically?
Those who actually understand science understand that the burden of proof is upon the party making the extraordinary claim, which is in this case the supporters of the CCVSI hypothesis.
Are there any parallel medical conditions which respond to very long term antibiotics? We use very long term prophylaxis in pediatrics for certain issues such as urinary reflux but I've never questioned CLD treatment because the patients seem to have no other answers.
Jay
Two things on that proposed MS treatment:
The first is that the inventor has said he thought patients were moving too fast in trying to get it done.
The second is that random remissions are part of the normal course of the disease. This means that any hypothetical treatment is going to appear to be successful in some percentage of cases. Balloons in the veins, copper bracelets, a vegan diet, having your tooth fillings replaced, anything. It's not even the placebo effect: it's more like arguing that the full moon cures colds, because some people's colds go away at the full moon.
And then if there's a relapse or exacerbation, most people won't blame it on the treatment. They might conclude that the treatment didn't work, or they might decide they'd be worse off without it.
This doesn't make testing things impossible, but it makes it a lot harder to weed out false positives.
I was very skeptical about CCSVI. I have also been a reader/supporter of a couple pages in this style. (That is NOT an insult) Mostly because I hated seeing people being taken advantage of, and I have seen it. But then I ended up being the a**hole when a close friend of mine (whom I had been convincing not to) went and got CCSVI done anyway.
In the first week, not much happened other then 'sudden' warm hands and feet. I thought it was his wishful thinking, as I could not see this happening. Now I see his speech and his walking improve to almost normal, and to be honest, I feel like more of an a**hole. It has Never been like this in his 'remissions', I've known him a very long time. It is now 10 months past 'treatment'.
He never expected a cure, only to feel better, and something sure happened. 'Placebo effect' starts to become an excuse for myself not being able to accept what has happened. And much like the people who talk on these pages, I have no idea what to say when something actually proves useful.
I have spent alot of time thinking that all my skepticism, when I got down to it, was just feeding my ego.
I can now somewhat admit that, yet I like to still think I was trying to help. Only problem is, I don't know what I actually contributed. Sure I can argue. But how do I know any of this for sure? How does anyone on these boards know? For or against? It's all just opinion like mine.
As I watch my (previously) very sick friend now, I feel so angry, Not that he is better but that I somehow can't stop making up reasons why it 'seems' to work. As I said before, 'remission' never allowed him to speak or walk like he does now, so I am done with that try. I cannot sit here (as a friend or good person), waiting, only to prove myself right. I feel I should be somehow cheering him on and hoping that it continues to work.
Do I choose to ignore this because the science isn't there?
Yes, Science should be the base, yet unfortunately, no matter how you look at it, it is done by people. That leaves science wide-open to all the downfalls all people have.
As I am skeptical of many 'treatments', I am also becoming skeptical that science is as pure as I grew up and hoped it was.
Even if this only proves to be a useful 'treatment' (as I still don't think it is a cure) It is about the health of my friend and others. That is all. It is this feeling that somehow consumes me.
I realize that all the discussing/arguing in the world serves no purpose to actually do anything (unless we are directly involved it what is going on). It may be interesting, but what are we solving? I will always be cautious about what I believe, but it has become a little more confusing.
Those are my thoughts, hopefully someone will not go ripping into them. I am not 'down' because I was wrong, but I feel I rather deserved this slap in the face. We are, after all, trying to 'help' those suffering. I was not helping. I've been on one side of the fence long enough, so what if I'm now closer to the middle.
"Probably about the same number of times that the Alties have been right."
Your post unwittingly makes your MO so very clear. This isn't about helping patients get better, better health care or better science, its a war between allopaths and alties for territory, patients be damned. Meanwhile patients suffer and die while you battle it out. Ridiculous doesn't even begin to describe it.
Here's an interesting response to Weintraub's call for false balance, from The Atlantic:
http://andrewsullivan.theatlantic.com/the_daily_dish/2010/12/how-neutra…
Thankfully, articles on ASD no longer require responses from J. B. Handley, Mark Blaxill, or Jenny McCarthy--many journalists now seem to understand that some people are just too wacky to be credible sources.
Yes, Dr. jay. My friend has not had a "remission" like this in years and years. She was expected only to worsen. If you could see her legs, before surgery-obviously no circulation to the feet- purplish, cold. And now, she can wear shoes. She hasn't been able to wear any for quite awhile. Her doctor is allowing her to speak to some medical students coming in for a visit.
Well, that last part puts you firmly in error, but frankly you weren't doing too well before, because you failed to see that the "war for territory" goes hand in hand with better science, better health care, and patients getting better. Is it the most desirable state of affairs? No, the most desirable state of affairs would be if cranks and quacks stopped robbing desperate patients of their money and their health. Unfortunately, very few of them will do that of their accord; they are too busy trying to feed their egos and purses to realize that their treatments are doing their patients no good. So if you object to what you characterize as a "war for territory" then tell us what you would do to address the damage caused by the likes of Hulda Clark?
TheAnalyst @186
Yes, but if so, that would be a reason to inhibit glutamate, not kill bacteria.
Therefore: Stop taking the antibiotics and test this hypothesis instead.
Nothing here that a good case of treatment-resistant, chronic Lyme disease wouldn't fix. To all of you - Orac, Dangerous Bacon, JKW et al (you know who you are) - who don't have it, may you soon walk in our shoes. The scientific evidence is out there. All you have to do is look.
@223
So you resort to threats and ad hominems instead of giving reason for your position...
Way to make yourself look like a fool.
Must be nice to never have to justify yourself when making an argument. All you have to do is say you are right and indicate that if you look you will see this. It saves a lot of time and you never have to demonstrate you know what you are talking about. And when papers are presented all too often they are just a list found on another website that gets passed around without the poster ever looking at the papers themselves, like the garbage posted earlier on.
I guess when you go through the Journey the hard way, you see things a bit more clearly. Sure there are deluded patients who seek this diagnosis out of desperation. While I admit my mind is now messed up, I still believe I have good judgement, and I don't fall in this category.
Patients with the most positive Western Blot usually are more likely to have Lyme Arthritis. Perhaps if you get the B31 strain out east with Lyme Arthritis, you will light up the ELISA and Western Blot like a Christmas tree. In other regions (such as in the midwest, south, and west), patients may be more likely to have neurological involvement. They may not light up the Western Blot like the people in Lyme, Connecticut. In fact, if you have the right strain, you can have what is already medically known as seronegative Lyme Arthritis (Oops! We forgot that one!).
There hasn't been enough peer-reviewed studies to conclude accuracy of serology from region to region, but since 13 additional strains of Lyme disease have recently been mapped, I hope this information comes soon along with non stone-age serological testing.
So why did I have the Western Blot done multiple times? I think the simple answer is intellectual curiosity.
I can have a positive Western Blot through LabCorp one day, and a negative one the next. I've done it before, and I can do it again. It was a mistake on my part though because insurance companies don't like this behavior. It's interesting to see how faulty testing is first hand. Oh, and don't get tested while on Rocephin, as all bands can go non-reactive. However, they will come back. At least this is my experience.
It was obvious when I was on Rocephin, because the days I didn't fall ill from a herxheimer reaction, it actually calmed my brain quite significantly (this was unlike any other antibiotic). I didn't know about the potential glutamate inhibitory actions then.
When I went off after 4 months pulsed treatment, guess what? I felt better then ever. When I stopped the medication I had a big increase in energy. During social interaction, people commented, how different I seemed, and my friend and family noticed this as well. I've had people say with a smile, "My god, it's you again."
So how long did this last? About 3 weeks, and then I felt like I was slipping. Armed with knowledge, I got back on antibiotics, and while I haven't relapsed, I did have a 2 flus followed by a herxheimer reaction and crushing chest pain. I did think, "Oh no, I am slipping backwards", but since the terrible herx symptoms only lasted a few days, I was relieved to know it was only temporary. In fact, I went back to doxy (a drug I could not previously tolerate), I believe it targeted an area that no other antimicrobial effectively targeted â my heart. The crushing chest pain subsided, and as inflammation went down, I thought this is weird, I don't have chest pain. Was it Lyme? Was it a co-infection? I don't know for sure. However, this was a symptom that persisted and while it was exacerbated by antibiotics many times, it never went away. I still have chest pain at times, but I think the remaining chest pain is more neurological based (well, I hope so!) since there is correlation between chest pain and neuro symptoms.
Perhaps what I have something like TBRF or another Borrelia. Even if this is true, as a patient, this isn't clinically relevant to me if the treatment remains the same. I am convinced it is at least Borrelia, because I've done Lyme IFA staining both at home and through a lab. It lights right up. No, I actually don't have exposure to any of the infections that the potential to cross-react with the testing.
If I really wanted to know the exact organism I have, I would either go to the professor at the University TBD Research Center that I have contact with, or I would order a PCR tests through Spirostat. However, I don't have money to fulfill my intellectual curiosity, and insurance won't pay for these tests (maybe 30% at most).
So, do I like antibiotics? No, I have more of the mind of a hippie, and I wish I could do this with plant extracts. However, I do take antimicrobial herbs and other things as well. To be very honest, I do not like the pharmaceutical industry, but I can't deny some medications (including some non-antibiotics, pain medication, and psychotropics) have helped me survive through this. I've tried plant based psychotropics, and while they do have an effect, they can't compete with the (unfortunately) addictive pharmaceuticals.
I did mention how sick I was, but I have failed to mention how much progress I have made. I can now hang out with friends, I can enjoy dinner at a noisy restaurant without freaking out. I don't have seizures or seizure-like episodes. I don't have anxiety attacks, and these use to run 5-10 times a day. Some days it was just one panic attack that lasted all day until IV sedation. I'm not in much pain. I can think more clearly (I attribute this to fibrinolytic enzymes more than antibiotics). My speech is more fluid. And most importantly, I can now sleep through the night.
Now aerobic exercise: Even though I was an athlete and exercised all the time prior to getting ill, I am not able feel comofortable doing this yet. In fact, it can make me feel terrible. I think this stems from the fact that my cortisol doesn't respond to exercise, and my HGH in non-existant pre and post exercise. I would guess there is still mitochondrial dysfunction as well. I can do anaerobic exercise, walking, and a trampoline.
I appear normal in public. You wouldn't know I am ill, and you wouldn't be able to see that how much I suffered. Well, maybe you could if you are an intuitive being. There are some of those, but they are few and far between.
I don't drive a car yet. I did give it to a family member in another state. You can thank me for being responsible and not being a danger to myself and others on the road. I do miss driving though.
So, am I better? No, but I am no longer praying that I die, and no longer feel that I am dying. Progress hasn't been extremely fast, so it's still easy for me to get a bit pessimistic at times. I still feel like I am surviving more than living, but if the trend continues, I would expect this to disappear as well.
I think it's unfortunate that alternative practicioners are bashed since I received so much help from them in terms of detoxification and supporting my methylation cycle. I can't emphasize enough how important it was to have an alternative practicioner help me along.
I feel that I have learned a lot. As much of a curse this illness was, I can also look at it as a blessing. While some would claim I was living a dream life in a beautiful part of the country, I was truly lost in the world before getting ill. I now have a very good idea of what I want to do with my life.
Well, I am done here, but thanks for listening. My intent isn't to persuade people what's right or wrong or whether Lyme disease exists or not. My intent is to inform, and make people realize how terribly one can suffer from diseases that can start out with vague symptoms.
To the poster that said:
Unfortunately, compassion is what is lacking. I don't think most of the doctors that told me I was healthy and fine had ill intentions. They were just misguided. Perhaps they thought I would feel healthy if the (basic) lab work said I was healthy. Many doctors liked to offer what they called "peace of mind", but unfortunately such a thing did not exist. For an example, a cardiologist can't give me peace of mind when I have crushing chest pain. A neurologist can't give me peace of mind with a routine EEG. Hell, I struggled to achieve peace of mind with hypnosis. Again, I don't think this group of doctors meant to do any harm or make me upset.
However, I would say most doctors are very quick to judge, and this often comes before any physical exam or reviewing of lab work or other tests. I can see it in their body language. I can see it in the way they act, and the way they talk to me. In my experience, they are not particularly good at hiding their demeanor, and I honestly don't think most doctors would make good actors. This is unfortunate, and this is generally why I dislike those in the medical community. I have received straight up insults from some doctors. I don't need to reiterate them, but these people should not be dealing with people.
Throughout my painful journey, the doctors that I had the most respect for, are the ones that weren't afraid to say, "I don't know." This may sound strange to some here, but when I had no idea what was going on, this was the most comforting response I could receive.
I also apologize about my second post once again. Even though I meant to say it the way I did, it was over-top-top, and immature.
@Travis,
I don't recall asking for an armchair diagnosis (I know what I have, thanks!), and your offering is completely what I'd expect from someone steeped in woo.
I think the quacks and swindlers who perpetuate false hope and vacuum huge amounts of money from their targets while offering nothing better than the placebo effect are slime.
Don't try to diagnose someone over the internet based on a comment. It's rude, and it's stupid.
I should have been more clear and reread what I wrote before posting. I was referring to blonski's comment who said the evidence was out there and all people had to do was look. The garbage posts with lists of papers were those by posters like theoriginalihaveaches and the lists posted by Der Ricther Spricht.
I am not sure what you think I have tried to diagnose you with. I did not realize anything I said referred to you.
In fact, I was heaping scorn on the "copy/pasta" trolls I see you referred to. I am sorry I offended you but I was not talking about you at all.
Oh, crap. I got you (Travis) mixed up with another commenter (Kyle). That was wrong of me, and I'm really sorry I directed my ire at you by mistake. :(
@Kyle: Don't armchair diagnose. It's presumptious and rude. You don't know from my comment what I have, and I didn't say I didn't know what I have - I just said it could be diagnosed as Lyme by alt-med quacks.
I don't understand how they say there is no science to prove chronic Lyme exists. What about all the people who went undiagnosed for years and were never treated? What about the people who were treated for 10 days without eradicating the infection, and years later actual live spirochetes were found in tissue samples? Why is this evidence always ignored?
I don't know why I'm so surprised by the ignorance. It took four years to find out I had no iron stores. Mayo missed it. Emory missed it. And a freaking Hematologist, Endocrinologist and Rheumatologist missed it. Guess who found it? ME!!!! I had to finally learn about it myself and then insist on having my ferritin checked by my small town ob-gyn. If these morons couldn't find iron deficiency, I didn't stand a chance with the Lyme being found. I ended up FINALLY being diagnosed SIX years after being bitten by ticks because I found a doctor who tested the Lyme bands that the CDC excludes from their test ( bands 23,31,34 ). I fell through the cracks because of the CDC's and IDSA's incompetence and stupidity.
I am the one who had to insist on and beg for an MRI. I had to BEG for one. And guess what? Lesions on the white matter were found. "We don't know what it is, though", was the answer I got. And it was ignored. I now know those lesions are a big result of CHRONIC LYME!
SIX years of hideous suffering is finally improving with antibiotics that I was denied by 13 doctors previously. Each month more and more symptoms improve and/or go away.
So, when you say Chronic Lyme doesn't exist, it shouldn't really be of any surprise when someone like me tells you that you can kiss my ass.
Am I bitter? Hell yes. You would be, too, if you lost everything because of stupid people who think they know everything, but know nothing.
Have a lovely day.
I don't understand how they say there is no science to prove chronic Lyme exists. What about all the people who went undiagnosed for years and were never treated? What about the people who were treated for 10 days without eradicating the infection, and years later actual live spirochetes were found in tissue samples? Why is this evidence always ignored?
I don't know why I'm so surprised by the ignorance. It took four years to find out I had no iron stores. Mayo missed it. Emory missed it. And a freaking Hematologist, Endocrinologist and Rheumatologist missed it. Guess who found it? ME!!!! I had to finally learn about it myself and then insist on having my ferritin checked by my small town ob-gyn. If these morons couldn't find iron deficiency, I didn't stand a chance with the Lyme being found. I ended up FINALLY being diagnosed SIX years after being bitten by ticks because I found a doctor who tested the Lyme bands that the CDC excludes from their test ( bands 23,31,34 ). I fell through the cracks because of the CDC's and IDSA's incompetence and stupidity.
I am the one who had to insist on and beg for an MRI. I had to BEG for one. And guess what? Lesions on the white matter were found. "We don't know what it is, though", was the answer I got. And it was ignored. I now know those lesions are a big result of CHRONIC LYME!
SIX years of hideous suffering is finally improving with antibiotics that I was denied by 13 doctors previously. Each month more and more symptoms improve and/or go away.
So, when you say Chronic Lyme doesn't exist, it shouldn't really be of any surprise when someone like me tells you that you can kiss my ass.
Am I bitter? Hell yes. You would be, too, if you lost everything because of stupid people who think they know everything, but know nothing.
Have a lovely day.
@attack_laurel, thanks for the clarification. I was very tired when I first posted that so it made less sense upon rereading but I really was confused as to why you were so angry at me. I have always enjoyed reading your posts here and found it very disconcerting to be called out by you, and to be called some sort of wooist.
Thanks Heather.
I share your frustrations. It's so obvious that longer treatment works, and regression is just as obvious just when you think you can stop.
I am bitter as well.
You gotta love the people here who think they are experts. I get a good laugh.
After all, leading experts such as Wormser and Steere have proved chronic Lyme doesn't exist. :smirk:
Well, that's actually not true. However, there is proof that it can persist.
To microbiologists: Pick up Lida Mattman's book, or if you are in school, pick it up from your library. Don't worry, it's not about Lyme. It's about cell wall deficient forms and general bacteriology. And she's no Quack (your word, not mine), she is highly qualified. While her work has been right over the years, much of her work is still criticized. Why? Because she knows how to think outside of the box that many of you are trapped in.
Google found this one in 0.21 seconds. Not bad, eh?
And yes, I have permission to use it.
If "chronic Lyme" is a quack diagnosis, consider Willy Burgoderferi (the man who discovered borrelia burgdorferi aka Lyme disease) a Quack. And we also have Quacks like Sam Donta who refused to sign the guidelines, and left the IDSA Lyme panel because he just couldn't stand people like Wormser who essentially butchered the guidelines to his liking without any input from other panel members.
One thing is clear: While Wormser may still smirk in the background (literally), and while I don't bet on things changing any time soon, passionate doctors and researchers at the IOM workshop (hosted by the IDSA) are recognizing how nasty and brutal Lyme and co-infections really are. They recognize that our current way of thinking needs to be challenged, and change needs to take place. The IOM was great, and it's definitely a step in the right direction.
Heather:
The people who went undiagnosed for years and were never treated aren't science -- they're *people*. And to say that CLD exists because people have been diagnosed with it is circular logic. If all we have are people, not science, then how has anyone known how to diagnose the people?
There is no consistent definition of CLD, nor a consistent set of tests to prove its existence. This guarantees that there will be people with different actual conditions who now believe they have the same condition. For years, people with Helicobacter pylori infections were misdiagnosed as being stressed out; doctors believed that stress caused ulcers, because they'd seen people who were stressed out and who had ulcers and who got better once the stress was relieved. It was only when somebody did the science that they found out that in fact they didn't all have the same condition. Most of them in fact had a simple bacterial infection that could be easily treated with antibiotics. We wouldn't really know that if it weren't for science, and even today, we know H. pylori is not the sole cause of stomach ulcers, so you can't just go "Oh, you have a painful tummy, here are some antibiotics," because they won't help if that's not what the person actually has.
I have no doubt that the people diagnosed with CLD are suffering, truly and honestly. Some may indeed have either lasting damage due to the spirochetes associated with Lyme, or they may even have some kind of stubborn infection. But given the ill-defined nature of the condition, I very much doubt they *all* do. It's terrible when people get misdiagnosed, I agree. But it's just as terrible no matter what the faulty diagnosis is -- rheumatoid arthritis, lupus, chronic Lyme disease, anxiety. So you and TheAnalyst should be advocating for more science, not proclaiming the answer is found, it's all done, let's shout down anybody who dares disagree. Because although this blog is predominantly visited by skeptics, in the public arena the situation is reversed. Chronic Lyme Disease policy is being set by *politicians*, which is a travesty. It's a travesty not because of whether not CLD exists; it's a travesty because it means the truth of CLD is no longer relevant; it will be decided by special interest groups instead. If that attitude invades any more of medicine, we are in for some very dark days indeed. I mean, what's next? Barring malpractice suits against doctors who perform c-sections? Barring suits against doctors who won't? Doctors forbidden from prescribing morphine to the terminally ill in case they end up facilitating suicide? Pregnant or lactating women barred from any medications, of any kind, ever, unless it has been proven safe? No more mass vaccination campaigns or subsidy of vaccines required for school entry? Forced sterilization of the unfit or undesirable? (That one's actually happened, and not too long ago either.)
I'm going on too long, but the point is, the mere fact that lobbyists can get politicians to pass laws exempting CLD practitioners from standard of care guidelines is very disturbing to me. Medicine should be about treating the patient with dignity and respect, not about pleasing a particular voting block. This is a problem far bigger than CLD, and we will all suffer because of it if we let it continue.
"Am I bitter? Hell yes. You would be, too, if you lost everything because of stupid people who think they know everything, but know nothing."
Yeah well at least the incompetent doctors that misdiagnosed you for years weren't practising woo. I would rather be misdiagnosed by an incompetent doctor that practices science-based medicine, than go to a woo-worshipping altie "doc" that might make you feel better.
Guidelines, guidelines, guidelines.
You apparently don't know the definition of guidelines, and the IDSA website even says their guidelines are optional. It seems that the powers that be somehow interpret the guidelines as mandatory.
I don't follow the IDSA guidelines. I don't follow ANY guidelines and I am very happy with my medical care. And no, I don't see a Lyme doctor. I see a local doctor.
Don't get in the middle between me and my treatment. It is my choice how I want to treat, and I don't care what your opinion is.
No, I don't care if you believe in chronic Lyme disease or not, but I prefer not to buy my antibiotics from a fish store, Mexico, or India. When you get desperate, you do these things for survival. And yes, if it came down to this, that is what I would do. Your antibiotics won't be "safeguarded" whether there are government guidelines or a mandate. The act of survival may be a selfish act, but it's instinctual. You would do the same.
Also, you said:
I want more science. However, I don't want more science from the powers that be. I'll quote Dr. Burgdorfer:
I do think we need a solid answer on how to solve this. Many researchers that were at the IOM workshop are trying their best to find those answers. When it comes down to it, I have immune problems, and I think it's obvious it will be harder to eradicate something when someone presents with immune problems and zinc deficiency (very low).
In the mean time, I use what we have. My quality of life was literally a 0/10. I won't go into details, but when it comes down to things, no risk outweighed the benefits â even if there were no benefits or the benefits were a placebo effect. If I were to have died from an IV infection, at least I would have died trying.
I realize this place is full of skeptics. It isn't my first time here. Really.
However, sometimes, such as in this case, I am skeptical of the skeptics. It is more personal.
I don't mean to personally attack you and your opinion. You can believe what you want, and that's fine. However, I will defend my rights, and I will do what I want.
The land of the free? Maybe not.
As an arrogant medical student with friends who are journalists, I have only this to say: if we had the time to do your jobs and our own, the world would be a better place. The truth is, just because you are a journalist, does not mean your are good at being a journalist. 95% of doctors and scientists would make better journalists than those who currently are journalists.
Weintraub, you are, quite simply, wrong about what makes good journalism. I'm not talking about selling stories or gaining viewers, I am simply talking about presenting the facts. The funny thing is that I can't understand whether you've got it all wrong because you don't understand how ridiculous the chronic lyme disease science is, or whether you have a fundamental misunderstanding of empirical reasoning.
Yes, you are arrogant. That is correct. And ignorant, biased, opinionated, angry, pessimistic, self-righteous,with a high ego and low-self esteem.
Wow, you're a medical student too? I thought you were just a skeptic nut hugger.
95% of journalist would make a better doctor than you. If...they don't adopt your ideological beliefs.
"I don't mean to personally attack you and your opinion. You can believe what you want, and that's fine. However, I will defend my rights, and I will do what I want."
Whatever, dude. You're life, your money, waste it however you see fit. That's your right. But try to impede progress, research or become a general drain on resources and you pretty much give up that right.
I have zero sympathy for you. We all have issues and my give a damn is currently broke.
As I stated in my previous post, this is all too common these days.
However, I guarantee you will give a damn if you:
a) obtained a chronic neuro-immune disease yourself.
b) Have a loved one with a chronic neuro-immune disease.
The zero sympathy is very common in our society today. I see it all the time. However, it no longer hurts me. Believe me, I have thick skin.
I didn't have any issues before I got sick (well besides being a little lost in the world), so I can't agree with your last statement. And no, I am not talking about aches and pains of daily living. It's well beyond what a normal person would ever have to endure.
I used to be the guy that mocked syndromes like Fibromyalgia and Chronic Fatigue Syndrome. When it comes down to it, I didn't know any better. Since people may look normal, I didn't realize how extremely debilitating these syndromes can actually be. I'm very sorry that I did this, and I know I will never do it again.
I would never make fun of someone with Autism, apparent MS, or ALS. The suffering involved in these types of syndromes is not a whole lot different, and in some cases syndromes like CFS or FMS can be as much or even more debilitating.
And you're right, it's my money. And your right, I have been a drain on resources just like an MS or ALS patient. I'm sure my case is close to $100,000 dollars. I can walk, talk, and interact, so you wouldn't necessarily see my physical disabilities. As long as I were to present the proper papers, obtaining disability isn't hard for me. And unless you are a professional fraud artist, obtaining disability isn't as easy as you may think.
However, I haven't been a drain a resources since receiving care. I have had an ER visit since antibiotics, but I am no longer a frequent flyer. You can thank me for that.
"However, I guarantee you will give a damn if you:"
And the broken record keeps playing. Apparently some people are never satisfied unless all the horrors they and they alone have had to endure are known and admired by the world.
Whatever.
Insightful.
Anyway, with the exception of Calli Arcale all I have is attacks against me. Calli Arcale, I appreciate the discussion. Honestly. While in some aspects, I may get a bit defensive, I honestly have no negative feelings towards you. I can tell you are a good, compassionate, and intelligent human being.
I would also like to thank Todd W. for catching an erroneous statement that I made.
@246 I also appreciate Calli Arcalle's writing, as well as several other 'skeptics' posting here. Their explanations as to the need for science-based medicine are so reasonable and well-stated that I sometimes don't understand why this issue is even being debated. I've lived both sides of the fence in this medical care nightmare. I used to be pro-LLMD for many years.
@245 Youngskeptic - I don't want to sound like a broken record, either. My thought is that if people know the horrors, they won't choose the same path.
"Apparently some people are never satisfied unless all the horrors they and they alone have had to endure are known and admired by the world."
I can almost taste the satisfaction you felt when pressing "post" for this particular gem. A well crafted sentence which not only not applicable in this case, but due to its total lack of compassion works contrary to its desired intention and illustrates the deliverer is unqualified to issue such a generalized statement, and the reader may ignore it and take into account the pretensions of the poster in any further communications.
@PvR Not my point but as I've come across as unfeeling, pretentious and arrogant there's no real reason to continue.
@Perception vs. Reality
I don't usualy post much in the public forum, but I've seen your name pop up in several places recently. It's seems that you are on a campaign of your own.
I'm sorry you were misdiagnosed. I am not pro-ILADS, or pro-IDSA. I wish there was middle ground honestly.
Experts on both sides are now engaging in more science and healthy debate, and are searching for answers. If you saw the IOM, IDSA experts are acknowledging this major gap in science as well as the need for serological testing. Top IDSA experts aren't necessarily agreeing with eachother, so I think it's obvious that debate will continue for these reasons. There has been debate and disagreement before you had Internet, and even though you think you know the answers, the debate will go on.
If you are ill, I am truly sorry. If you haven't figured out what is wrong, I sincerey hope you do, and eventually find your way to recovery.
Merry Christmas.
@250 The Analyst - My name has only popped up in two places, here and one other site. My only 'campaign', as you call it, is to spread awareness about some of the dangerous, unethical and non-standard (aside from abx) medical practices. Too many people are being harmed in the interest of politics (Oh, I mean in the interest of medicine). I'm talking harm as in physical body injury, misconduct, real injury, not hurt feelings. All these drugs and treatments being thrown ($sold$) at Lyme patients carry risks. Apparently, some doctors do not pay close enough attention to these risks.
I understand and fully support the healthy debate. I have made this quite clear to many. What I don't understand, sometimes, is how people can diagnose an infection in the absence of any evidence of bacteria presence. If you don't know what you are treating, how do you know how to treat it and how do you know how long to treat it? (I heard that somewhere recently).
"Before I had Internet" - interesting comment. Care to expand?
I fully support the "debate going on". It needs to "go on". There needs to be more studies done - more science. Patients need to stop being bombarded with drugs and supplements for diseases that they may not have. There needs to be definitive tests and definitive diagnostic criteria. These things need to be decided by medical professionals and scientists, not politicians and activists. The medical community needs to police itself. Although, they certainly need to do a better job of it.
This chronic Lyme debate is a perfect example of such policing. Doctors practicing on the edge of legal and ethical boundaries need to be held accountable.
My only "answers" are in reference to how I was (mis)treated. My experience is hopefully not the norm. Nevertheless, there are LLMDs out there running some very dangerous medical practices. They diagnose virtually every symptom, every drug interaction, as a Herx. They almost bury their patients in excessive medication regimens. They mislead patients into endless and expensive treatment protocols. I don't know if they do this out of ignorance or if it is intentional. In some ways it doesn't matter why they do it. They just need to stop the dangerous practices. The dangerous practices need to be brought into the open.
I think Calli Arcale's posts are eloquently stated. S/he explains these same concerns in a straight-forward easy to understand fashion.
Merry Christmas.
"These things need to be decided by medical professionals and scientists, not politicians and activists."
You had your chance and failed catastrophically. Don't expect another.
"You had your chance and failed catastrophically. Don't expect another."
Brilliant. Let's ban the people with the means, education and training to solve an issue that's in their field of expertise. Makes perfect sense.
You suck like the tick that infected me 8 years ago.Your views are unfounded and ridiculous.Obviously you are on the same payroll as that fry cook critic turned medical expert Trine Tsouderos.Yes I'm F,ING bitter.I wish you could experience my worst week of this {FAKE} disease,and then see what you had to say about it.Until I finally got to a Lyme literate Dr. I was getting worse with each passing week. With proper treatment I started getting better almost immediately. Again until proven otherwise you,and your views SUCK !
@252
Great use of specious logic there, I see...
@254
Yeah, using ad hominems, bad grammar, total illogic and cursing other people out will get others to agree with your viewpoints....
My mother has had Lyme Disease since I was in the 4th grade. I am now working on my second bachelors degree and she is still being treated and still has the symptoms of lyme disease, although she is in remission. From what i've gathered over time and doing treatment and research on the topic is that Lyme Disease obviously mimicks many types of illnesses and that is what is so complicated about it. It depleats the immune system and if caught early enough can be cured with no long term complications. In my mother's case she had it for almost a year before she was diagnosed and almost died from it because it attacked her immune system. Since being diagnosed, being treated with home health care, and going to new york to be treated (i live in northwest indiana) she has now many new complications all linked to the damage that the lymes has done to her body. She has rhematoid arthritis, onset of MS, eye and muscle deterrioration, cancer, etc. These have all been linked to her immune deficiency because of the lymes. She has also been reinfected 3 other times. Not helping her cause at all. Overall i do believe that because lymes is a mimicking disease it can be misdiagnosed and people may not link other illnesses to it although without their altered health would probably never get that illness. Lymes can be chronic or acute, you can live or die. you make the decision, but my experience tells me that it is truely real and definately damages your body now and for the long term.
Once again, the trolls who advocate for treatment of chronic Lyme disease have taken over this site. All the stories of vague symptoms that are attributed to Lyme disease by Lyme Literate Medical Doctors (LLMDs) and treated by them with long term antibiotics, so-called "pulse therapy" with antibiotics, supplements etc., are based on anecdotal fairy tales.
The diagnosis of Lyme disease in the absence of actual environmental exposure to a tick-infested area and a physician-diagnosed erythema migrans (bulls eye rash), might be a factor in later-than-optimal medical diagnosis and treatment. Further complicating the diagnosis is the absence of laboratory tests that are notoriously inaccurate with many false positive results. LLMDs, then will test for the presence of the Lyme disease antigen in urine which will probably yield the result they are looking for. Such tests are totally bogus.
Richard Blumenthal the Connecticut Attorney General listened to so-called experts and a very vocal and political chronic Lyme disease constituency and made a political decision to use his office to attack the Infectious Disease Society of America (IDSA) based on the specious argument that these experts had an agenda...their supposed ties to big Pharma and insurance companies. Following a court decision and the appointment of an independent panel to examine the recommendations of the IDSA for treatment of Lyme disease, it was determined that none of the allegations made by LLMDs regarding the IDSA were valid; IDSA recommendations for diagnosis, testing for Lyme disease and treatment of Lyme disease remain the gold standard.
Orac mentions the increased incidence of gall bladder disease with long term unnecessary antibiotic treatment, but failed to mention the increased risk of septicemia directly attributed to the use of PICC lines when placed for long-term at-home therapy; physicians in New York and other states have had their licenses revoked because of these prescribed treatments for "chronic" Lyme disease.
Another fallacious argument is comparing tuberculous which requires long term antibiotic treatment - with Lyme disease, which is readily treatable and responsive to short term antibiotics. TB becomes resistant because of patient non-compliance labeled as primary resistant tuberculous. The international medical community has recognized this and all patients who have tuberculous disease are very closely monitored for compliance, throughout their treatment.
The facts are the facts and all the nonsense espoused by "chronic" Lyme disease patients, the practitioners who prey upon them and journalists who have questionable affiliations do not change science-based medicine.
The Lyme activism efforts of the Connecticut Attorney General have apparently been joined by the Commonwealth of Virginia. Virginia has formed a Lyme Disease Task Force comprised of Lyme disease support group and activist leaders, attorney's, alt-med providers, an LLMD and others. It seems Virginia is going to come up with their own set of diagnosis and treatment guidelines for Lyme disease. To hell with controlled clinical studies.
According to Bill Hazel, the Secretary of Health and Human Resources, "This taskforce will work to bring recommendations and information to the Governor regarding Lyme disease and the diagnosis, prevention, public education, medical treatment, and will also consider the impact of Lyme disease on children." http://www.hhr.virginia.gov/News/viewRelease.cfm?id=443
Politics, not medicine.
@256
Autoimmune diseases (MS and rheumatoid arthritis) linked to immune deficiency??
@257
Not sure where you're getting your information but a quick PubMed search seems to indicate the opposite of what you state. The first sentence in one abstract easily found reads:
"The Lyme disease spirochete, Borrelia burgdorferi, can be recovered long after initial infection, even from antibiotic-treated patients, indicating that it resists eradication by host defense mechanisms and antibiotics."
The summary states this:
"Thus, several eukaryotic cell types provide the Lyme disease spirochete with a protective environment contributing to its long-term survival."
Perhaps you haven't seen this study so here is the link.
http://www.ncbi.nlm.nih.gov/pubmed/1634816
Perhaps facts are not facts after all?
@LipidLover: please find (and post) an article more current than 1992 that posits the same information. Any good study should have multiple replications showing the same results if they are valid. Unfortunately, I have a meeting in a few minutes or I would search pubmed myself.
I don't have a dog in this fight. However, I agree with Calli Arcale that many things are being lumped into "CDL" that don't belong there (I know of one woman who vehemently insists she got CDL from mosquitoes on a Caribbean trip...and then sexually transmitted it to her husband). While she may be actually ill, she doesn't have Lyme. Real diagnositic tests and a set criteria would be useful, and that's what the CDL believers should push for.
That's what I get for typing in a hurry and not using preview...typing errors.
diagnostic tests....
"please find (and post) an article more current than 1992 that posits the same information."
I'm sorry, I didn't realize science had a best before date. I don't have a lot of time though, so perhaps you can tell me the expiry date for studies and I will find only ones after that date and post them here.
"Any good study should have multiple replications showing the same results if they are valid. Unfortunately, I have a meeting in a few minutes or I would search pubmed myself."
You imply that study wasn't a good one but don't say why not. Since I don't have a lot of time, perhaps you can choose for me only the truly good studies that haven't yet reached their expiry date, and then from those 4 I will find and post the ones that posits the same information.
@LipidLover: funny. Science DOES have a best before date; good scientists re-test conclusions made in the past with modern capabilities. A simple example (since I read Harriet Hall's wonderful review on the The Great Influenza): back in 1918 they couldn't find viruses in labs; they didn't have the capability. Now we can usually readily identify most known viruses, and figure out new ones based on the old.
So, what I am saying is this: if this study was a good one then there should be others, more recent, that confirm its findings. Look at the many, many studies that review H. pylori and ulcers, for example. Most medical studies are eventually re-tested for truth. Science either confirms a good medical method, or informs us that this method, although used for eons, is worthless.
I did a quick search on pubmed and got 6 articles, one brand new, with the key words "fibroblasts, borrelia burgdorferi, antibiotic". The new article is the only one newer than 14 years old. Given our improved methods of identifying infectious agents in that time, perhaps more research is being done. But THIS is what needs to be done: research that supports or denies a hypothesis.
Can only read the extract, and I will honestly say that medical research is NOT my strong point, so if someone can review the article and see if it's useful, please let me know.
http://www.ncbi.nlm.nih.gov/pubmed/21173306
"LipidLover" cites a 1992 paper in support of the premise that Borrelia burgdorferi can survive antibiotic treatment.
Unfortunately, this was a study using tissue culture - fibroblasts, keratinocytes, human epidermoid cancer cells, monkey kidney epithelial cells and human epithelial adenocarcinoma cells. Since none of these are immune cells (and since many of them are not even normal cells), the results cannot be extrapolated to the intact organism.
People not familiar with microbiology are often surprised to find that antibiotic therapy - even high doses for long periods of time - cannot completely eradicate a bacterial infection if there is no functional immune system. Antibiotic therapy - at doses tolerable to humans - cannot eliminate every last bacteria; it simply reduces the "burden" to the point where the immune system can "mop up".
For a better paper on persistence of B. burgdorferi in intact animals, I'd suggest:
Hodzic E et al. Persistence of Borrelia burgdorferi following antibiotic treatment in mice. Antimicrob. Agents Chemother. 2008 May; 52(5): 1728â1736.
http://aac.asm.org/cgi/reprint/52/5/1728
If you read this, you'll see why the data supporting persistent Lyme infection isn't as clear-cut as some of the proponents of (and people profiting from) "Chronic Lyme disease" like to claim.
Prometheus
B17 is becoming more difficult to get because the FDA is cracking down on people dealing with B17 because, after all, doctors donât get any money off of this â itâs a vitamin. And doctors make a lot of money when youâre sick, they donât make any money when you are well. The Bible says the love of money is the root of all evil
@266 augustine
What's B17?
Idiot. It's hard to get because there is no such thing as "Vitamin B17". It's another name for Laetrile.
Promoting Laetrile. How low can you get?
Little Augie, B-17s are not vitamins, they are airplanes that were used in in World War II. Please try to not get confused.
If you are talking about laetrile, which some people claim is a vitamin, then you are showing your general lack of science knowledge. It is a form of cyanide, a poison. Apple and apricot seeds are high in cyanide so that when animals eat the tasty fruit after transporting it away from the mother tree, they won't eat the seeds and a new tree can grow.
You really ought to tell your parents that they need to get you a science tutor despite what your religion dictates. That way you will stop being such an embarrassment.
Is it just me or are Augie's posts becoming increasingly off topic and unhinged? I wonder if we are seeing a progressing mental illness.
It wouldn't be the first time.
"For a better paper on persistence of B. burgdorferi in intact animals, I'd suggest:
Hodzic E et al. Persistence of Borrelia burgdorferi following antibiotic treatment in mice. Antimicrob. Agents Chemother. 2008 May; 52(5): 1728â1736.
http://aac.asm.org/cgi/reprint/52/5/1728"
Interesting study, thanks for the link, although I am curious as to why you characterize this study as 'better' than the one I linked to. Care to elaborate why?
The last sentence in that study says this:
"Further studies are needed to determine the
eventual fate of the persisting organisms following antibiotic treatment in the context of controlled animal studies."
According to these authors anyway, the science regarding the persisting organisms following antibiotic treatment is far from an open and shut case like the Tribune article claims, making chronic lyme disease not so dubious after all. Given this, wouldn't it be wiser to not ridicule and mock patients diagnosed with chronic lyme disease and the physicians that treat them? Or is it common practice in medicine to ridicule everything until the science has proven something beyond a shadow of a doubt (if that can even be done)?
Are you a mouse?
Do you ever plan to draw any sort of distinction between "disagree with" and "ridicule and mock"?
Today's Hartford Courant has the Callahan/Tsouderos article (front page of the "Living" section).
I saw that article and read it as well. I have to say that the fact that so many supposed skeptics read an article by a food critic and published in a bankrupt newspaper and got firmly behind it is a rather worrisome indication of what skepticism has become.
Nice example of ad hominem.
It's become something that avoids ad hominem arguments like yours? I can see why you would find that worrisome; sooner or later the people you hope to influence will realize you're just taking cheap shots instead of actually making your case.
Here's a few extra hints for you, in case the above was too subtle for you to puzzle out: Good journalists are those who do good journalism, not those who have carefully avoided getting any food-related articles on their CV. Good news outlets are those which publish good journalism, not those owned by companies in good financial status.
"Nice example of ad hominem."
Ad hominem isn't by definition fallacious but I appreciate the compliment nonetheless.
"Nice example of ad hominem."
Ad hominem isn't by definition fallacious but I appreciate the compliment nonetheless.
LipidLover (#272) asks:
Sorry, I thought I was clear when I pointed out that the paper "LipidLover" cited was in tissue culture with no immune system. Let be even more explicit: studying bacterial infections in tissue culture and extrapolating the results to an intact organism is pointless because - even in the presence of antibiotics - tissue cultures can't eradicate bacterial infections, not even "simple" ones.
"LipidLover" goes on to say:
Perhaps I should have also cited a few of the studies that have found no evidence of chronic B. burgdorferi infection after antibiotic treatment. If you read (and understood) the Hodzic et al study, you'll note that their determination of "chronic infection" could only be made by having fleas bite the "infected" animals and transmit the infection to "uninfected" animals. They were unable to culture the organism from the blood or other tissues. B. burgdorferi is known to be a fastidiuous organism, but "fastidious" doesn't mean "uncultureable".
Even if chronic infection with B. burgdorferi is found to be possible, it remains true that many people are being treated for "chronic Lyme disease" without ever having a documented infection or detectable antibodies. The data supporting chronic B. burgdorferi infections is still weak and indirect, expecially compared to the data showing that such infections don't occur. This doesn't mean that it can't happen or doesn't happen, just that it hasn't yet been unambiguously been shown to happen.
Final point - as useful as animal models are, chronic infections in mice (especially lab mice) wouldn't necessarily mean that humans can have chronic infections.
The fact remains that "chronic Lyme disease" has attracted a large following of people with vague and inconsistent symptoms who are being preyed upon by uninformed, gullible and often unethical "practitioners". Even if "chronic Lyme disease" does exist, it isn't necessarily the cause of these people's problems (and the "treatments" offered are necessarily going to "fix" them - even if they do have "chronic Lyme disease").
Prometheus
@Prometheus:
Playing devils advocate here, and going away from B. Burgdorferi for a moment - has there been any research on a possible viral cause for the cluster of symptoms people associate with "Chronic Lyme Disease"? Thogtovirus (in the same family as Influenza) is tickborne and known to infect humans.
It is only non-fallacious when the argument being (supposedly) debunked by reference to facts about the presenter is dependent upon facts about the presenter. For instance, when someone says "You should believe this claim I'm putting forth about nutrition because Dr. Gillian McKeith Ph.D says it's so," it's relevant to point out that McKeith's "doctorate" comes from a correspondence course from a non-accredited college.
You may think that you could in a similar manner impeach the work of any science journalist simply by showing that she has done food journalism previously. But even if you managed to fool yourself, it would fool no one else. You would have to actually find something wrong with Tsouderos' article, which I suspect you would have done in the first place if you were actually capable of doing so.
SC: "Today's Hartford Courant has the Callahan/Tsouderos article (front page of the "Living" section)."
Excellent news!
A sample comment from the website:
"May the harm and deaths caused to Lyme disease victims as a result of this irresponsible and untruthful article be on the reporters' consciences for as long as they live.
This also applies to the Chicago Tribune staff who condoned this and to the entities and individuals who are behind this.
The latter are fully aware of the lies they perpetrate and should be investigated by the Department of Justice and the US Congress."
Such a comment really shows the sort of fanatics you can find on the "chronic Lyme disease" side of the issue. They can't conceive of the possibility that those who do not believe in a disease that has still not been shown to exist might be correct, or even incorrect but acting in good faith.
No, in the minds of the fanatic faithful, there must be some shadowy conspiracy behind an belief that differs from theirs; there must be "entities and individuals ... behind this"; they must be "fully aware of the lies they perpetrate"; it cannot be anything as simple as the scientific evidence is just not supporting the idea of CLD, it has to be some big plot that requires "the Department of Justice and the US Congress" to dismantle.
When you see CLD believers expressing such fervent faith in the existence of something they have not a single piece of evidence for, you realize that the fervent faith they express in the existence of CLD does not mean one whit more.
@281 "The fact remains that "chronic Lyme disease" has attracted a large following of people with vague and inconsistent symptoms who are being preyed upon by uninformed, gullible and often unethical "practitioners". Even if "chronic Lyme disease" does exist, it isn't necessarily the cause of these people's problems (and the "treatments" offered are [not] necessarily going to "fix" them - even if they do have "chronic Lyme disease")." That is worth repeating.
@284 I think you have a right to treat your body any way you choose - as long as you are fully informed and capable of making such decisions. Many Lyme patients have unknowingly become lab rats, victims of experimental drugs and treatments sold by doctors eager to diagnose them with virtually any infection, disease or disorder.
Hat tip to the Tribune, the Respectful Insolence group, and others. Here's one life they saved.
I commented many comments back, and I still plenty of arrogance. No, it's not surprising. It's what expect from the type of people that visit this site.
Well, this clip isn't about Lyme. It's about CFS from Golden Girls in 1989, but it illustrates the arrogance and ignorance of doctors when it comes to these controversial diagnoses. CFS may not be as controversial now, but there are still doctors that believe it's not real.
http://www.youtube.com/watch?v=us8iGG2biDw&feature=player_embedded#!
Now, I don't recall if I mentioned it in my previous post. But I have CFS/ME. That's right, CFS and Lyme. I strongly believe they are related and I have hope that science will connect the two instead of using CFS as a diagnosis of exclusion.
Now, if you actually believe that there are no biomarkers for CFS, you are one gullible skeptic. There are dozens I can think of off the top of my head. I won't speak about lyme, but CFS misinformation is a global conspiracy perpetuated by ignorance. The CFS biomarkers I have indicate physical disability that skeptics and even those that are in charge of denying disability can't look at my results and say I am not truly ill. Cold, hard, proof.
However, even though my physical disability is considered moderate-severe, neurological symptoms were and still are the most debilitating of them all. And many of these symptoms are not psychological. The anxiety that I get may present as psychological, but it stems from neuro-immune dysfunction. No, I am not afraid of psychological diagnoses, and I see a psychiatrist. I've seen counselors, therapists (some that utilize biofeedback and neurofeedback), and I haven't had much success. I can't take SSRI's. I was in the ER 3 days in a row after a severe ADR to an anti-psychotic. They said maybe it was akathisia, but I think in reality it just made my neuro-immune dysfunction much more severe, and perhaps I wasn't able to detox the drug because of a decoupled P450 system.
I have had severe depression in the past. I put myself inpatient, and was treated outpatient, and got better. This is completely another animal. I know my body.
I do think whatever is causing CFS causes immunodeficiency. If I had a video of the amount of bacteremia that was present, I'm sure most here would say that it wasn't my blood. If they believed me, they might fall on the floor in shock that one could actually live with the amount of bacteremia I had without abnormal white counts, a fever, or let alone septic shock. I've had a researcher examine my blood, and I have a microscope at home. The researcher didn't say too much, but I remember him saying something like "Wow, you are very ill".
That being said, I have improved immensely from the combination of antibiotics and antimicrobial herbs. Am I well? No. But that's not the point. The point is I am better. I went all over California for vacation: San Jose, Santa Cruz, Tahoe, San Francisco. I did crash one night with exaccerbated symptoms, but in the past I would have crashed for weeks and I wouldn't have been able to tolerate the cold. I couldn't walk outside in the mild winters with a heavy coat on without shivering.
This may be true in some or many cases, but I find it complete irrelevant in my case. I also agree that treatments may not fix me, but I have hope that it's possible. I already know they make me better (not well), so I'll have to stick to that for now. Actually, starting new treatments consistently make me much, much worse before better, but that's another story that I don't feel like talking about right now.
Again, I am sorry you were mistreated, but to assume that none of us are infected (I'm talking about multiple infections, not just Lyme) is once again, both ignorant and stupid. And I honestly wish labs were good enough to pick up infections that were seen in my blood, right in front of me, but they aren't. Is it opportunistic infections? Perhaps. I can't know for sure, but my best guess is that the presence of a glutathione-depletion methylation block may be letting opportunistic pathogens through the gates. And that being said, I have had amazing results in treating methylation block with injectable methyl-B12 and a few other "active" vitamins. It just goes to show you can't always rely on a lab result. And yes, I was checked for everything.
It's a damn complicated puzzle, and I am determined to try to solve it. Many will try to discredit my efforts (e.g. you can't solve it, your wasting your time, etc), but I can guarantee nobody will stop me.
I apologize for some missing words and bad grammar. A side effect of this illness is that I can no longer write as well as I used to. I used to be one that rarely made grammar or spelling mistakes. Now I reread my posts 2 or 3 times over, and there are errors that make me cringe.
-Former grammar/spelling Nazi
With better PCR testing --- that "chronic lyme" is panning out to be coinfections like bartonella and babesia. Both noted for their chronicity in some people. Go ahead and downplay chronic lyme all you want.
My autistic boy tested positive for bartonella grahamii ---- a pathogen noted for chronicity and neurologic involvement. Try watching that play out for 8 years until somebody figures it out. Preventable tragedy -- and a disease that needs to be treated until proven gone. The era of PCR is here and hopefully this can untangle some rheumatologic disorders to a cheaper and less tangential method of treatment.
Also if you look at the proteobacteria family in general you will notce that they organify mercury. Bartonella kids pay the price.
RC--
I'm glad your boy has been diagnosed, and I hope treated. Bartonella is no laughing matter.
But things like his case are a piece of why it's important to work against misdiagnosis: a person who thinks they have chronic Lyme isn't going to pursue other diagnoses, so if whatever they're doing for the "chronic Lyme disease" doesn't happen to address their real problem, they'll keep being sick.
Yes, sometimes you can treat for an infection that isn't there, or isn't vulnerable to the treatment in question, and accidentally cure something else. But that's not the way to bet.
RC comments:
I think it is a stretch to try to link the mercury-methylation ability of Bartonella to autism, especially as many of the bacteria in the gut can also methylate mercury (they're also proteobacteria), and they are present in much higher numbers (and also live in a region where insoluble inorganic mercury compounds are more prevalent).
Any methylmercury produced by the small number of Bartonella in endothelial cells or lymphoid tissue would be insignificant compared to that produced by the trillions of E. coli and other bacteria in the colon.
In addition, mercury hasn't been shown to cause autism.
Secondly, the thrust of the article in the Chicago Tribune wasn't that treatment of properly diagnosed Lyme disease is quackery - it was about the "alt-med" practice of diagnosing Lyme disease by questionable (or even ludicrous) means and then persisting in treatment with antibiotics well beyond a reasonable period of time.
If a diagnosis of chronic Lyme disease or chronic Bartonella infection is made by culture or PCR, there is no problem with using an appropriate antibiotic for an appropriate length of time. Where the quackery comes in is in diagnosing by "clinical impression" and then persisting in antibiotic use because the symptoms haven't abated. In the real microbiological world, if an antibiotic doesn't work in the expected period of time, the diagnosis should be questioned.
And what is the "expected period of time"? For Lyme disease, it is four (4) weeks. For Bartonella, treatment ranges from 2 - 4 weeks [up to 3 months in immunocompromised patients].
Again, none of this is controversial nor was the point of the Chicago Tribune article to call into question the treatment of properly diagnosed Lyme disease. Rather, it was to point out that making a Lyme disease diagnosis based solely on symptoms or other ambiguous indicators (i.e. anything other than culture or proper PCR) is quackery and so is treating patients for month upon month (or year upon year) with antibiotics based solely on symptoms.
Prometheus
@ RC:
Can you explain your position a bit better? It sounds like you're claiming that the fact your son was diagnosed with "chronic lyme" was somehow beneficial. In what was is that helpful? Seems to me that the important part is the bartonella diagnosis, and I can't see how calling it "chronic lyme" would do anything other than make it LESS likely that the bartonella would actually be found!
In other words, why is a misdiagnosis good?
Don't you just hate it when people who are not experts offer up critiques based not on the protocols of the field or issue in question, but their own perspective based on something else entirely?
Paul Raeburn critiqued the Tribune article not the science or disease that was written about. There are professional journalism protocols all journalism professionals should follow (the protocols that scientists should follow are not being debated in Mr. Raeburn's post.) And Trine Tsouderos and Pat Callahan are not special - they have to follow the same rules their colleagues follow.
You do comprehend the difference between critiquing the science and critiquing the journalism - which is a completely different field and subject? Science Tracker is not for scientists, but for journalists and they are not the same thing.
Based on journalism protocols (again not science protocols), Mr. Raeburn, who is a journalism professional, made the right call.
If you don't know the protocols required of all journalists regardless of the topic then look them up or politely contact Mr. Raeburn and ask him to explain them to you. It would be less embarrassing than having the point sail right past you.
Any journalism "protocols" that demand giving those who are completely and demonstrably wrong, equal time with those who are factually correct, are moronic.
If I chose to start insisting that 1+1=3, would you similarly say that it would be required for any journalist discussing something related to mathematics come to me for "balance?"
@KAL the necromancer;
There are certainly journalists among Orac's readers, and I have a feeling they're laughing at you. Particularly since you seem to have missed Orac saying:
"For the most part, it's an article complaining about the journalism of the article. Boiled down to its essence, Raeburn's complaint is the opposite of what we skeptics, scientists, and supporters of science-based medicine complain about all the time about journalists, namely that Callahan and Tsouderos did not fall into the trap of false balance, did not give undue credence to pseudoscience, and did not 'tell both sides' as though they had equal or roughly equal credence."
The point you feel "sailed right past" is quite clear to Orac, and his response is also quite clear -- on the topic of "chronic Lyme," Raeburn's approach is off-base.