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.

It was Laetrile.

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.

Comments

  1. #1 John S
    December 22, 2010

    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.

  2. #2 John S
    December 22, 2010

    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.

  3. #3 John S
    December 22, 2010

    Well, enough with this now anyway.

    Merry Christmas

  4. #4 Chris
    December 22, 2010

    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”.

  5. #5 stuv.myopenid.com
    December 22, 2010

    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!

  6. #6 Todd W.
    December 22, 2010

    @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.

  7. #7 Scott
    December 22, 2010

    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, 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 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.

    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.

    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.

    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.

    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.

    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.

    Nice sophistry, my friend. Keep it up.

    “You keep using that word. I do not think it means what you think it means.”

  8. #8 Calli Arcale
    December 22, 2010

    TheAnalyst @ 189:

    “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.”

    No offense to you, but I think the goal of the campaign is to sell Cymbalta.

    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.)

  9. One thing the CLD crowd seems to not realize is that CLD skeptics are not trying to say people aren’t suffering and don’t have real problems.

    What we are saying is that they (probably) don’t have a condition of Chronic Lyme Disease. That fact that we can’t say what they are suffering from doesn’t negate the likely fact that what they have isn’t CLD.

  10. #10 Dangerous Bacon
    December 22, 2010

    “1 milyon Euro.”

    Cool! Can you send it in small bills?

  11. #11 T. Bruce McNeely
    December 22, 2010

    Nice how everyone can tell me that what I experience is impossible, but how many times in medicine have the naysayers been wrong.

    Probably about the same number of times that the Alties have been right.

  12. #12 Jen
    December 22, 2010

    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.

  13. #13 SOHBET CHAT ODALARI
    December 22, 2010

    Kıyamet günü, teraziler kurulur, namaz ehli getirilir, karşılığını tam alırlar. Oruç tutanlar getirilir karşılığını tam alırlar. Zekat ehli getirilir onlar da karşılığın tam alırlar. Hac ehli getirilir onlar da karşılığını tam alırlar. Belaya, musibete uğrayanlar getirilir onlar için terazi kurulmaz, ücretleri, mükafatları tartısız bol bol verilir. Bunlara verilen sevapların büyüklüğünü görenler, (Keşke bizim de dünyada vücutlarımız makaslarla doğransaydı da biz de böyle büyük nimetlere kavuşsaydık) derler

  14. #14 Antaeus Feldspar
    December 22, 2010

    pharma / MS Societies are still trying to fight this by not studying it scientifically.

    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.

  15. #15 Jay Gordon, MD, FAAP
    December 22, 2010

    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

  16. #16 Vicki
    December 22, 2010

    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.

  17. #17 Jay
    December 22, 2010

    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.

  18. #18 Anonymous
    December 22, 2010

    “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.

  19. #19 brian
    December 22, 2010

    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-neutral-should-journalists-be.html

    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.

  20. #20 Jen
    December 22, 2010

    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.

  21. #21 Antaeus Feldspar
    December 23, 2010

    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.

    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?

  22. #22 Chemmomo
    December 23, 2010

    TheAnalyst @186

    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?

    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.

  23. #23 blonski
    December 23, 2010

    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.

  24. #24 novalox
    December 23, 2010

    @223

    So you resort to threats and ad hominems instead of giving reason for your position…

    Way to make yourself look like a fool.

  25. #25 Travis
    December 23, 2010

    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.

  26. #26 TheAnalyst
    December 23, 2010

    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 – 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:

    I don’t think any compassionate person would deny that the people diagnosed with chronic Lyme disease are actually suffering.

    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.

  27. #27 attack_laurel
    December 23, 2010

    @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.

  28. #28 Travis
    December 23, 2010

    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.

  29. #29 Travis
    December 23, 2010

    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.

  30. #30 attack_laurel
    December 23, 2010

    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.

  31. #31 Heather
    December 23, 2010

    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.

  32. #32 Heather
    December 23, 2010

    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.

  33. #33 Travis
    December 23, 2010

    @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.

  34. #34 TheAnalyst
    December 23, 2010

    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.

    If I could move a mountain
    With nothing but my hands,
    And I could make the rain fall
    An all drought tortured lands,
    If I could make things better
    On every single day
    I could still not change opinions
    And make others think my way

    It is futile that we think
    Another’s mind could be shaped,
    That with just our simple words
    Their ignorance has escaped,
    And yet no one does consider
    That they might just be wrong
    ‘Cause to find a new opinon
    Could take too very long

    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.

  35. #35 Calli Arcale
    December 23, 2010

    Heather:

    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?

    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.

  36. #36 Cura te ipsum
    December 24, 2010

    “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.

  37. #37 TheAnalyst
    December 24, 2010

    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.

    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:

    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.

    I want more science. However, I don’t want more science from the powers that be. I’ll quote Dr. Burgdorfer:

    Money goes to people who have, for the past 30 years, produced the same thing—nothing.

    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 – 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.

  38. #38 SC (Salty Current)
    December 24, 2010

    Don’t get in the middle between me and my treatment wiring. It is my choice how I want to treat wire my apartment, and I don’t care what your opinion is.

  39. #39 Chris
    December 24, 2010

    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.

  40. #40 augustine
    December 24, 2010

    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.

  41. #41 youngskeptic
    December 24, 2010

    “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.

  42. #42 TheAnalyst
    December 24, 2010

    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.

  43. #43 youngskeptic
    December 24, 2010

    “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.

  44. #44 TheAnalyst
    December 24, 2010

    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.

  45. #45 Perception vs. Reality
    December 24, 2010

    @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.

  46. #46 James
    December 24, 2010

    “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.

  47. #47 youngskeptic
    December 24, 2010

    @PvR Not my point but as I’ve come across as unfeeling, pretentious and arrogant there’s no real reason to continue.

  48. #48 TheAnalyst
    December 24, 2010

    @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.

  49. #49 Perception vs. Reality
    December 25, 2010

    @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.

  50. #50 Anonymouse
    December 25, 2010

    “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.

  51. #51 youngskeptic
    December 25, 2010

    “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.

  52. #52 Dave Marsh
    December 25, 2010

    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 !

  53. #53 novalox
    December 26, 2010

    @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….

  54. #54 Megan
    December 26, 2010

    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.

  55. #55 lilady
    December 27, 2010

    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.

  56. #56 Anonymous
    December 27, 2010

    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.

  57. #57 Militant Agnostic
    December 27, 2010

    @256

    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.

    Autoimmune diseases (MS and rheumatoid arthritis) linked to immune deficiency??

  58. #58 LipidLover
    December 28, 2010

    @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?

  59. #59 MI Dawn
    December 28, 2010

    @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.

  60. #60 MI Dawn
    December 28, 2010

    That’s what I get for typing in a hurry and not using preview…typing errors.

    diagnostic tests….

  61. #61 LipidLover
    December 28, 2010

    “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.

  62. #62 MI Dawn
    December 28, 2010

    @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

  63. #63 Prometheus
    December 28, 2010

    “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): 1728–1736.

    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

  64. #64 augustine
    December 28, 2010

    B17 is becoming more difficult to get because the FDA is cracking down on people dealing with B17 because, after all, doctors don’t get any money off of this – it’s a vitamin. And doctors make a lot of money when you’re sick, they don’t make any money when you are well. The Bible says the love of money is the root of all evil

  65. #65 augustine
    December 28, 2010

    @266 augustine
    What’s B17?

  66. #66 T. Bruce McNeely
    December 28, 2010

    B17 is becoming more difficult to get because the FDA is cracking down on people dealing with B17 because, after all, doctors don’t get any money off of this – it’s a vitamin.

    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?

  67. #67 Chris
    December 28, 2010

    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.

  68. #68 Militant Agnostic
    December 28, 2010

    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.

  69. #69 Chris
    December 28, 2010

    seeing a progressing mental illness

    It wouldn’t be the first time.

  70. #70 LipidLover
    December 28, 2010

    “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): 1728–1736.

    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)?

  71. #71 Chris
    December 28, 2010

    Are you a mouse?

  72. #72 Antaeus Feldspar
    December 29, 2010

    Given this, wouldn’t it be wiser to not ridicule and mock patients diagnosed with chronic lyme disease and the physicians that treat them?

    Do you ever plan to draw any sort of distinction between “disagree with” and “ridicule and mock”?

  73. #73 SC (Salty Current)
    December 29, 2010

    Today’s Hartford Courant has the Callahan/Tsouderos article (front page of the “Living” section).

  74. #74 LipidLover
    December 29, 2010

    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.

  75. #75 T. Bruce McNeely
    December 29, 2010

    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.

  76. #76 Antaeus Feldspar
    December 29, 2010

    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.

    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.

  77. #77 LipidLover
    December 29, 2010

    “Nice example of ad hominem.”

    Ad hominem isn’t by definition fallacious but I appreciate the compliment nonetheless.

  78. #78 LipidLover
    December 29, 2010

    “Nice example of ad hominem.”

    Ad hominem isn’t by definition fallacious but I appreciate the compliment nonetheless.

  79. #79 Prometheus
    December 29, 2010

    LipidLover (#272) asks:

    “…I am curious as to why you characterize this study as ‘better’ than the one I linked to. Care to elaborate why?”

    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:

    “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”

    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

  80. #80 Chance Gearheart
    December 29, 2010

    @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.

  81. #81 Antaeus Feldspar
    December 29, 2010

    Ad hominem isn’t by definition fallacious

    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.

  82. #82 Anonymous
    December 30, 2010

    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.”

  83. #83 Antaeus Feldspar
    December 30, 2010

    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.

  84. #84 Perception vs. Reality
    December 30, 2010

    @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.

  85. #85 TheAnalyst
    January 4, 2011

    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.

    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.

    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.

    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.

  86. #86 TheAnalyst
    January 4, 2011

    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

  87. #87 RC
    April 7, 2011

    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.

  88. #88 Vicki, Chief Assistant to the Assistant Chief
    April 7, 2011

    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.

  89. #89 Prometheus
    April 7, 2011

    RC comments:

    “My autistic boy tested positive for bartonella grahamii —- a pathogen noted for chronicity and neurologic involvement. … Also if you look at the proteobacteria family in general you will notce [sic] that they organify mercury. Bartonella kids pay the price.”

    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

  90. #90 Beamup
    April 7, 2011

    @ 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?

  91. #91 KAL
    July 20, 2011

    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.

  92. #92 Beamup
    July 20, 2011

    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?”

  93. #93 Scottynuke
    July 20, 2011

    @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.

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