I recently had a pleasant, brief email exchange with Kris Newby, the producer of the latest medical advocacy pic, Under Our Skin. There's been a number of similar movies lately, mostly about quacky cancer therapies. This one is apparently much better made, and follows the controversy regarding "chronic" Lyme disease.
I'd heard an interview about the movie on Diane Rehm, and was rather unnerved by it. It sounded like a typical I-drank-the-Kool-Aid-now-I'm-gonna-make-a-movie kind of thing. Still, I haven't written about it, because I haven't seen the movie. That's going to change. Kris is being kind enough to send me a copy, despite my warning that I'm very likely to pan it.
Anyway, in our conversation, she recommended that I check out a particular piece in the Journal of Medical Ethics. Before I go into the significance of this paper, let me give you a little background. Stick with me here, I'll make it brief.
Lyme disease is a tick-borne bacterial infection common in many parts of the U.S. and Europe. In the U.S., it is especially common in the Northeast, but is present in pockets elsewhere. It usually presents with a rash, and sometimes progresses to joint pain and can have neurologic symptoms as well. These joint and neurologic symptoms can occur several weeks after the initial infection. There is also an entity often referred to as "chronic Lyme disease". This entity isn't widely accepted in the medical community, but is strongly advocated for by a vociferous group of patients and doctors who believe that Lyme disease can cause all manner of very late-onset symptoms.
The controversy is a nice model for many similar controversies: the science doesn't support the existence of the disease, but a dedicated group of activists, including some scientists and physicians, feel their extensive experiences more than make up for lack of data. What some of us have problems with is not only the lack of data, but also the willingness of people who believe in this to go about trying to prove it in unconventional ways, for example, relying on lab tests that are not validated. It certainly doesn't help their cause that they attract a lot of kooks, but of course, it doesn't really matter how many kooks the chronic Lyme folks have on their side; what matters is data, and if their data are the most convincing, their hypothesis wins.
Now, as we talked about yesterday, good ideas don't always win right away. But if these ideas come closest to the truth, win they will, no matter who or what stands in their way.
And the chronic Lyme folks certainly believe that there are dark forces arrayed against them. You see, these folks think that Lyme disease causes all sorts of problems, and that there are many solutions, including long term antibiotic therapy. The data so far do not support this hypothesis. And this is where it gets interesting.
Medical societies often put out consensus statements about the best science-based way to approach diseases. These statements are in no way binding, but they are often taken quite seriously. For example, the American College of Physicians, my professional group, has a number of statements on the proper approach to upper respiratory tract infections, such as colds and sinus infections. The articles on the recommendations are printed alongside the justifications and data. In this case, the data do not support the use of antibiotics for most sinus infections, at least in the first week or two. This is mildly controversial, mainly because patients often believe that an antibiotic will make them feel better. The evidence belies this.
So the Infectious Disease Society of America (IDSA) has recommendations on the treatment of Lyme disease, which are shared by all the other relevant mainstream medical societies, and these guidelines specifically recommend against the long term use of antibiotics for supposed chronic Lyme disease.
Now, it is a fact that at this point, the data support these guidelines. The vast preponderance of evidence has failed to show any benefit to the use of antibiotics in this setting. This of course does not guarantee that the guidelines are correct, but it certainly is the best we have for now. If and when evidence comes along that is good enough and plentiful enough to convince the medical community otherwise, the guidelines will change. It may not happen overnight, but eventually it will, because no "conspiracy" is vast enough to hide scientific truth for long. But some people are unconvinced. In support of their cause, they have created several organizations, at both the local and national level, and have enlisted various "experts". One thing many of these experts seem to have in common is that they are not actually regarded as experts by the rest of the medical community. The other fact about these organizations and professionals is that they often go outside the scientific process to advocate for their ideas.
For example, these groups convinced the Connecticut attorney general to investigate the IDSA for alleged anti-trust violations. This is highly unusual, and the case was settled when the IDSA agreed to review, but not necessarily change, their recommendations. Part of the allegation was that there was a massive conflict of interest. You see, because the guidelines recommend against long-term antibiotic therapy, insurance companies often will not cover it. Some folks see this as a vast conspiracy. Others see the guidelines as saving patients from ineffective, dangerous and costly treatments.
So, in the mainstream of science-based medicine, this is essentially a non-issue. No significant evidence has yet shown up to overturn our current approach to Lyme disease. This hasn't stopped the chronic Lyme advocates. And this takes us back to our movie producer and her suggestions to me. If you think way back to the beginning of this piece, you'll recall that Kris recommended I check out a piece in the Journal of Medical Ethics. I did. I was impressed, but not for the reasons she hoped.
I have a strong interest in medical ethics, although I'm not an ethicist myself. Still, I'm generally familiar with the jargon and the writing styles. This piece reads like no ethics article I've ever seen. It is basically an advocacy piece for the concept of chronic Lyme disease, and starts from an entire set of problematic assumptions. First, the title: Attorney General forces Infectious Diseases Society of America to redo Lyme guidelines due to flawed development process
. That's actually not true:
The main actions of the agreement include:
Complete resolution of the Attorney General's investigations, issues, and potential claims and causes of action against IDSA and its volunteer panel members.
The current Lyme disease guidelines remain in effect. The medical and scientific basis of the 2006 guidelines remains in place and unchallenged.
IDSA will convene a review panel to determine whether the 2006 Lyme disease guidelines should be revised or updated. Howard Brody, MD, PhD, who has been jointly selected by the Office of the Attorney General and IDSA, will serve as an ombudsman who will have a limited role that will focus on screening potential conflicts of interest. The ombudsman will not be involved in the operation of the review panel. Any proposed changes to the guidelines would require a supermajority vote of 75 percent of the panel.
In other words, the IDSA agreed to change nothing in return for the CT AG returning to practicing law rather than medicine. Any ethics article that starts with a lie is unlikely to continue well. In fact, it goes on to assume as fact statements such as, "the diagnosis and treatment of Lyme disease has been suppressed, with profound healthcare implications for patients, their families and their communities." This is not fact. This is opinion, and a controversial (and wrong) one at that. Now the paper uses this topic to explore ethical issues in conflicts of interest, the use of guidelines in general, and basically rehashes the "health care freedom" argument, which is basically a quasi-libertarian argument to allow patients access to any care, no matter how bad.
So, after reading this, I was curious: who are the authors? Are they infectious disease docs? Ethicists? Once I started looking at the first author, I was hooked.
His name is Dr. Raphael Stricker. He's a hematologist, that is, someone who studies blood, blood banking, blood disorders, and the like. He is not an infectious disease specialist, the specialty that usually treats Lyme disease (although other specialties, such as neurology and rheumatology are not infrequently involved). Take a look at his CV, especially his research experience. You'll notice that it seems to drop off after around 1993. Well, that's not unusual. People don't always stay in research forever. (Further down, he's working for ILADS, the "chronic Lyme" advocacy group---curious). Anyway, further digging shows a possible reason for his drop off in research:
An investigation conducted by the University found that Dr. Stricker falsified data for a manuscript and a PHS-supported publication reporting research on AIDS. In the manuscript, Dr. Stricker selectively suppressed data that did not support his hypothesis, and reported consistently positive data whereas only one of four experiments had produced positive results. In the publication, Dr. Stricker reported that an antibody was found in 29 of 30 homosexuals, but not found in non-homosexuals. However, Dr. Stricker's control data, which he suppressed, showed the antibody in 33 of 65 non-homosexuals. The falsified data was used as the basis for a grant application to the National Institutes of Health. The ORI concurred
in the University's finding. Dr. Stricker executed a Voluntary Exclusion and Settlement Agreement in which he has agreed not to apply for Federal grant or contract funds and will not serve on PHS advisory committees, boards or peer review groups for a three year period beginning April 1, 1993. The publication "Target platelet antigen in homosexual men with immune thrombocytopenia" in the New England Journal of Medicine, 313: 1315-1380, 1985 has been retracted (New England Journal of Medicine, 325: 1487,1991).
Hey, he even made the New York Times!
So, in this debate about "chronic Lyme disease", who is credible? Is it the experts in the field who have looked at the preponderance of data? Or is it a movie producer citing an ethics article which contains incorrect statements of fact and is written by a non-expert in the field who was banned from NIH funding for falsifying data?
Kris, you didn't convince me to take you more seriously with your reading recommendations, but hey, I'll still check out your movie. Hopefully it's more entertaining than Expelled.
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Hihi, what a noobie.
I thought that once you were convicted for falsifying data you were forever shunned by the scientific community.
How did Raphael Stricker, with his history, get something published in a medical journal?
Wow! As a journalist, I can see you wrote this article with bias. Your treatment of Kris Newby is poor journalism. You have judged her and punched out an article, before even seeing the movie. I don't think you have done ALL your research. Your writing shows you are standing on one side of the issue to begin with...that is poor journalism. If you want to change the world, one reader at a time, I think you need to be a little bit more open minded.
I have had Chronic Lyme Disease for twenty years. I am not a "kook". I am not a hypochondriac. I am not a conspiracy theorist. I am sick. This illness has stolen many things from me.
I am simply a person who was bit by a tick. I have become so sick with neurological symptoms that I am no longer able to work in journalism. Does this benefit me in any way? No...I can not receive disability because Lyme is not considered a disability. I want to work, but my body prevents it. My three children and I live off $1000 a month...not my choice. I would much rather be in a newsroom and be productive.
Let me ask you...if I don't have Lyme Disease...what do I have? My blood work (CDC positive) shows I have the Lyme bacteria in my blood...and have had it there for twenty years. If it walks like a duck and quacks like a duck...I'm just saying...
I am tired of this political war. I just want to be treated with respect and to become healthy once again. I just want truth. The only way that will happen is with research and legislation. We live in a democracy...if it is what the people want...it will become law. Doctors like you do not make laws...legislators and THE PEOPLE do.
All I can say is...your bio says you are from the "Great Lakes" region. An area which is endemic for Lyme Disease. No one disputes that! I just hope you don't get bit and have to face brain-washed doctors like you. I think you would be writing a far different article if a family member suffered from this, and you would not be mocking this disease. Lyme Disease is a reality and it could happen to you, or a family member. I hope not, but...that is what it takes many times to open up a persons eyes....and mind.
Enjoy the movie!
Um, Kim...I'm not a journalist. Also, I explicitly did not write about the movie yet. I'm waiting to see it. This current criticism is not of Kris or the movie but of the fake experts who approach this problem and controversy from ideology rather than science.
Maybe not "forever," but for a very long time. It is possible to restore one's reputation after that, but it's very, very difficult, and the stain will always be there.
As far as the NIH, researchers caught falsifying data on an NIH grant application, progress report, or research paper done with NIH money will be banned from receiving NIH funds in the future for a period of time, usually at least two years, often more. They'll also usually be banned from serving on study sections or in any capacity within the NIH. Not surprisingly, the combination of the scientific dishonor of having falsified data plus being banned from NIH grants will almost always destroy the scientific career of someone who commits scientific fraud and is caught at it.
If you post articles such as this, and asking for credibility in your articles, than you should use good journalism. If you don't, you can not be taken seriously.
Furthermore...you didn't answer my question...if I have the Lyme bacteria in my body....and I don't have Chronic Lyme Disease...then what do I have? I have been tested for everything else. I have spirochetes swimming around in my organs....do you not think that can cause neurological problems?
And..."fake experts"...are you referring to doctors who risk their careers only to see improvement in patients?
Am I saying either side is 100% correct. No. But, at least the "activists" are TRYING to do something. This disease needs more research and more legislation. It is obvious that not enough is known. In the meantime, people suffer...some die.
excellent post, PAL. you've laid out, in a small space, all the failings of an alternative medicine movement.
I especially liked this from the NY Times article you reference: "How the Inquiry Began...Studies by researchers at other institutions have failed to confirm any role of the antibody in the disorder." Therein the difference between real medicine and quackery. Real medicine produces reproducible, reliable results. If not reproducible, we move on.
I guess Kim Sampson's not too worried about Dr. Raphael Stricker's history of faking his data.
Kim, I certainly will not answer anyone's personal medical questions, other than my own patients.
Im curious, did you find a problem with the facts in this piece? If so, which ones?
PalMD...I do not have a problem with your presentation of information, it is how you mock the information that I find disparaging and discrediting.
As for Dr. Stricker, I am not familiar with him. I will research him further. I guess Dr. Benway is not too concerned with patients dying of Lyme Disease, and more concerned with politics.
Is there proof Dr. Stricker falsified Lyme data? If he allegedly falsified information....it was with AIDS, according to your post. It was not Lyme. And, one doctor does not represent an entire community.
The ISDA is also accused of falsifying and BLOCKING research information. Am I saying either side is 100% correct. No! I think they both have good things to offer, and I think there is alot of finger pointing. I think they both need to learn more. I do not believe all the facts about Lyme Disease is on the table yet, so everyone needs to chill out and get ALL the information. Which equals MORE RESEARCH!
So, why can't the medical community come together instead of pointing fingers? People are dying! I am not about the war...I am sick of the war. I want to see people get treated with respect....and not told it is all in your head. Does a CDC positive western blot mean it's all in my head? I have spirochetes swimming around in my organs...does that mean anything to doctors?
All I am saying is...many doctors such as yourself arrive to the conclusion that Chronic Lyme doesn't exist. Could it be it does...but there is just not enough information presented yet?
Research is the bottom line on this. More research needs to be done to get to truth, but if doctors already have their minds made up, how is anything going to change? How can truth be found? The fact of the matter is....more and more people are getting sick...that isn't changing.
Too much politics...not enough truth. The activists are trying to find truth. When is everyone going to stop acting like monkeys throwing poo and get on board to find truth and quit pointing fingers? People are dying!
The activists are trying to find truth. When is everyone going to stop acting like monkeys throwing poo and get on board to find truth and quit pointing fingers? People are dying!
Here's the problem: what if the "truth" is that Chronic Lyme disease actually is psychosomatic? Or what if the CLD is actually a form of neurological damage left by the disease that results in the symptoms of CLD long after the actual bacteria is dead and gone? Would the activists be able to handle that as the truth? From what I've seen with people who suffer from CLD, years of antibiotics rarely solve the problem.
The difference between a scientist and a crank is not that the crank believes something different than mainstream science. It's that a crank cannot, or will not change their views based on the preponderance of evidence. If a movement is being pushed by scientists, it will eventually be dropped or accepted as science based on the evidence.
Finally, I don't doubt that you suffer from CLD, regardless of whether it's a parasite, or psychosomatic. My concern is that the treatment you receive is effective, and if the spirochete/antibiotic hypothesis is wrong, that we can move on from that to an effective treatment for the symptoms you have. I think it's absolutely important though, that we treat a psychosomatic illness as as every bit as debilitating and worthy of a cure as any other neurological condition. Getting rid of the stigmas of "liar"or "crazy" from hypochondria and other psychosomatic illnesses would probably go a long way to both ensuring people get the effective treatment they need, as well as reducing the reliance on cranks pushing false physical explanations to what is a neurological problem.
I haven't found any problem with the facts you have presented in this piece BUT you are missing the point that Kim is trying to make.
FIrst of all, you have never asked the question, why are these patients turning to alternative medicine? The medical profession seriously needs to consider that question. Could I put forward a few ideas? Hell, I could write a book on the subject. Kim has struck upon a chord that physicians do not want to address and you have proven that point by saying, " certainly will not answer anyone's personal medical questions, other than my own patients."
Can you not comment on the fact that she is not getting any answers from her physicians? I have been chronically ill for over 10 years and I've basically given up on getting any answers. I am not crazy, I am ill. My sister has mirror symptoms to my own and she's not gotten a definitive diagnosis. Have you ever seen the TV show Mystery Diagnosis? You might pan it but believe me I pray every day for one of those doctors who will walk into the room and say, "I believe you and I will be the one to find out the cause."
I am NOT psychosomatic and believe me I'd be able to handle anything as the truth. And I have had the test results to indicate:
- Lupus - ANA levels which supported a diagnosis. Later the numbers returned to normal and the doctor had no answer as to why.
- A white blood count that was so high my physician would not let me go home. I had to go immediately to a hematologists office to determine it was not leukemia. Those white blood count numbers continued for a year while they "watched" it.
I could go on and on, but you get the drift. Like Kim I am fed up with the medical community's inability to help me. I've simply given up and learned to live with the pain and that's the saddest part. There's an answer but I can't find it. If an alternative medicine "quack" told me that something would help I would probably try it. And THAT'S why patients are turning to other methods.
I find your offhand dismissal of Kim to be indicative of my experience. It's true you can't comment on her specific case but you should not decry people's reaching out to them if you don't understand or admit why that is happening.
Let's hope you're never put in our position.
- Suzanne
Logical fallacies:
1. Tu quoque
2. The Golden Mean, a.k.a. the middle ground or argument to moderation.
3. Appeal to ignorance.
Kim has struck upon a chord that physicians do not want to address and you have proven that point by saying, "certainly will not answer anyone's personal medical questions, other than my own patients."
Sure. There's no way that diagnosing people from comments on a blog would be completely unethical, and that being the reason he's refusing to do it. No way at all.
I'm sorry, but that chord exists only in your fevered imagination.
Hi Pal - Love your blog. I was hoping you (or someone else knowledgeable) could comment briefly (or point me to a good reference) on the the actual symptoms of Lyme. After reading this post and the Denialism blog post (including the heated discussion thread!), I'm a little confused. Are there actually any accepted long-term symptoms of Lyme (assuming that it's treated)? If so, is the important distinction between real symptoms and CLD the fact that the person (a) had a definitive diagnosis of Lymes in the past, and (b) has symptoms that are consistent with known long-term symptoms?
Personal interest disclosure - I was diagnosed with Lymes about 4 years ago now - never had a bullseye rash (at least that I noticed) and only caught it when my knee swelled up to the size of a grapefruit - from my reading at the time, I inferred that that meant I was somewhat far along in the course of the disease. I did a regular course of antibiotics, but I do still have some knee pain. I had assumed it was from the Lymes arthritis, but if that's not an accepted symptom, well...maybe it's time for me to go buy some new running shoes. :P
The name Stricker sounded familiar to me.
Sure enough, he's apparently also active in the area of "Morgellons Disease," another dubious ailment supposedly related to the bacterium that causes lyme.
A good internist can likely help you.
http://www.cdc.gov/ncidod/dvbid/lyme/lyme_brochure.pdf
http://content.nejm.org/cgi/content/short/357/14/1422
There's also the seed of the Courtier's reply in there as well, Orac.
I also heard the Diane Rehm show, which left me a little perplexed. Is chronic Lyme medically plausible? If it is caused by the family of bacteria that includes syphilis, could it be possible that it, too, has a long term phase?
Secondly, why is it that the only treatment suggested for chronic Lyme is prolonged antibiotics? I haven't heard mention of any other treatments.
I did not ask for him to give a diagnosis but to look at the fact that there are patients who are turning to alternative medicines due to their in ability to get answers from their physicians. I'm sorry if I didn't word that very well.
Would physicians be willing to look at that aspect?
- Suzanne
You didn't ask for anything, you asserted that Kim had "struck a chord" and that PalMD's refusal to address a specific case "proved" that doctors do not want to address why people turn to quackery.
Well, there's no need to answer that, it's obvious... people turn to quackery because medicine, at present, cannot help them (whether Lyme's disease is psychosomatic or not). Kim is dismissed because frankly, she's a kook.
Also,
Like Kim I am fed up with the medical community's inability to help me.
Do you think doctors like it?
I'm back!
I also did not ask for a diagnosis, but answers to the FACT that I have lyme bacteria in my body....I have for twenty years, yet he says CLD does not exist. I am not looking for a diagnosis...I have one. However, I would just like to know what he thinks it could be then if NOT CLD. Why ignore positive blood work with neurological symptoms?
Oh wait...I forgot....I am psychosomatic! I should have realized that a long time ago...hahaha! And neurological damage from a previous disease could be an answer, but I still have the bacteria in my body. Alive and active.
Seriously, all I am asking for is truth. If long term antibiotics are not the answer...I can handle that...but, I need for the medical community to do something...not ignore me and sit with pride on guidelines that are not getting me healthy. RESEARCH IS THE ANSWER!
However, I see people getting healed from long term antibiotics, so when I feel as awful as I do, why not try something more than the "regular" doctors will offer...which is nothing. I am tired of being sick, so I will try "alternative approaches"...anything to get better. I want to get back to work...I don't want to rely on public assistance to survive. But, no one is helping me, so I have to take charge of my own health until something changes.
I think all people with CLD would really like truth, whatever that may be...as we aren't trying to do anything BUT get healthy and gets our lives back. The impression that we don't want the truth and want to be crazy people is a sad stereotype.
And, Suzanne...thank you for your support against all of this craziness...oh wait...we have CLD, we are the crazy ones, since we are psychosomatic. haha I have been told what is wrong with me is biological in nature. Even by "regular doctors", even if they can't put their finger on it.
I have said it many times today...and I will again. Research needs to be done for all the information to come out about this disease.
" Could it be it does...but there is just not enough information presented yet?"
This sounds like a reasonable question to me. Why do you classify her as a kook? I somehow believed that this might be a forum in which we could have an open discussion. Perhaps it's the wrong place for patients to express themselves. Certainly I've never had a physician accuse me of having a fevered imagination.
Is this simply a place for physicians to pat themselves on the back for exposing Huff Po's promotion of bad science? I would hope not.
Kim, you are asking me to comment specifically on your health, including taking for granted facts not in evidence. It would be irresponsible of me.
In a general sense, the literature does not support the long-terms persistence of "lyme bacteria in the body".
Suzanne, this is what makes her a kook:
I also did not ask for a diagnosis
and then, in the same damned paragraph:
I would just like to know what he thinks it could be then if NOT CLD.
Contradicting herself? Check. Anger? Check. CAPS all over the place? Check. I can almost imagine the spittle on her monitor.
Anyway,
the FACT that I have lyme bacteria in my body....I have for twenty years
Okay, I'll bite. Who did the bloodwork? How often have you had this bloodwork done in the past twenty years?
Oh wait...I forgot....I am psychosomatic!
Apart from the fact that nobody said that, it does seem you have psychological issues.
RESEARCH IS THE ANSWER!
Okay... research what, exactly?
However, I see people getting healed from long term antibiotics
No, you don't. You see people getting better while taking long-term antibiotics, which is something entirely different.
By the way, Kim & Suzanne:
http://www.news.ucdavis.edu/search/news_detail.lasso?id=8584
I am not a doc or medical practitioner, but I am curious about unsupported diagnosis, especially as it leads patients to alternative practitioners. Kim,how do you know you have this bacteria in your system? Is the testing method applicable and validated? Did you undergo a course of long term antibiotics? Did it work? Are you seeing a "non-traditional" practioner? (Naturopath, Chiro, Etc).
Have you seen a mental health practitioner to evaluate the psychsomatic possibility? The previous posts about the very real nature of PsychSom illnesses is not meant as a palliative to your condition, but an avenue for real evaluation and treatment.
Kim Sampson:
The people want to get rid of cancer!! Let's legislate it out of existance... that's the ticket! /sarcasm
Seriously, Kim... legislation should have NOTHING to do with it. Research, data, peer review -- the scientific method in general -- should be what determines the appropriate treatment for diseases. The fact that you (and others) want to dictate scientific innovation through legislation and lawyering does not speak well of you.
To all the "doubting Thomas's.....My beautiful, gregarious 42 year old daughter suddenly suffered bizarre symptoms (swelling under her eyes with noticable movement), severe headaches, hair falling out in clumps, swollen lymph nodes, blurry vision, middle finger on right hand sticking straight out and couldn't bend it for over a year...toxic pregnancy,etc.,etc.,etc.....She saw the"best" doctors for over 4 years...went in short notice from the best salesperson to not being able to "concentrate"....She was tested repeatedly in these "tremendous" clinics for Aids, Parkinsons,fibromyalgia, etc.--only to be told it probably was psychosomatic!!!!!!!When I asked about the Aids testing, she said she had a very compromised immune system.....Checked the internet about compromised immune system and came up with Aids, Fibromyalgia and CHRONIC LYME....Looked up the symptoms for Chronic Lyme and there were all of her myriad symptoms....Bingo! One of her doctors advised me that chronic kyme was at the same stage of acceptance that Aids was many, many years ago.....that is, unnamed and unaccepted as a disease.....Let's hope we have better educated and hopefully smarter doctors now then first denied Aids....My idea is to have one of these doubting (doctors) agree to be bitten with an infected tick (I'll arrange it)....do not receive antiobiotics....and wait several months without treatment......Then I'll guarantee these "doubters" will suddenly address the horrendous disease they so grandly dismiss with a snear and a smirk......Please, just have ONE of these so-called "doctors" agree to this simple, foolproof test!!!!!!!!
As someone who has been a close observer of HIV disease for a very long time, I can tell you that this analogy is as wrong as it is emphatic. No one seriously doubted the existence of HIV disease---there was a societal taboo against talking about it, and widespread discrimination, but it was treated by the medical establishment as most diseases are. It had a name that evolved as we learned more, and very quickly a cause was found. It is a true triumph of science-based medicine.
I'm wondering about the whole idea of long-term antibiotics. Since CLD assumes a single infectious episode a long time ago, a decent antibiotic will either cure it, because the bacterium is susceptible to it, or it won't, because the bacterium is immune to it (what also seems to be the result of some of the clinical trials showing that only first-time antibiotic use leads to improvement).
Coupled with the problem that the bacterium cannot be cultured (and therefore a "20 year infection" neither be proven nor disproved)CLD seems to be one of those convenient diagnosis where a "we don't have a clue what it is and how to treat it" becomes an infection that we can throw lots and lots of antibiotics at.
So it's surprising that BigPharma Inc. isn't leaning on PharmaShill.org to get that CLD treatment approved, lots and lots of antibiotics to sell there.
I wonder if those who demand more research into chronic Lyme disease would change their minds if a large body of research showed that it did not exist. Anyone want to answer?
The reason IDSA is especially emphatic against long-term antibiotic use (particularly as a spurious therapy for "chronic" Lyme) is because that's an excallent way to breed antimicrobial-resistance in the community.
It's not that IDSA loves obfuscation. It's that IDSA *hates* superbugs!
So to the chronic Lyme cohort, what differential diagnoses have you entertained? Why haven't you considered a different etiology?
PalMD........The source of the AIDS analogy was, like you, a successful MD who also was very involved with practicing during and with the early stages of AIDS and he sticks to his statement about the frustrating early dealings with AIDS.......You didn't comment however about my challenge with an untreated infected tick bite....I do believe that some doctor who makes such strong statements about doubting the existence of Lyme Disease maybe should agree to my challenge!!!!!In response to Mu, the treatment of Lyme with antiobiotics is totally effective during the very few weeks from the bite....You sometimes have a rash with flu-like symptoms and arthritic joints (even in very young children). If treated with 2-3 weeks of antiobiotics you should be symptom free--cured for life.....If, however, you miss the rash, blame the "lameness" on a "sprain"----and don't get antiobiotics within the first few weeks you will probably go into chronic lyme which may not surface until severe stress.....or a second bite.....it can surface years later...The Western Blot is the only test to truly show lyme disease and you can be infected with a negative Western Blot......I guess the lesson to be learned is to keep your body covered if venturing in high grass or woods....I personally don't believe in long term antiobiotics as the disease seems to resurface when you stop.....My hope is for research to find a cure to stop the suffering....How can doctors play God by denying a disease exists because THEY can't diagnose it???????Again,please bring me a doctor that believes in his conviction enough that he'll subject himself to a bite by an infected tick and suffer the consequences......(I'm waiting)
First, offering to acquire an infectious disease to satisfy an angry and grammatically challenged commenter is just silly.
Second:
So, is a Western the best test or not? And if it's negative, how do you know that you have Lyme, rather than a correct Western?
One possibility is that we don't understand the disease well enough yet. The other is that it isn't actually there.
I give up...you have all convinced me that I am a kook and that CLD does not exist. Not! I have been mocked all afternoon and told I was pretty much crazy. All I can say is, you do not have to live in my body. And, I am glad you don't.
Excuse me as I wipe the spittle off my monitor.
I have had Western Blots done off and on for ten years. I was bit twenty years ago and had the classic bulls eye rash. I never got it treated. I am not a hypochrondriac, so I decided to "just keep an eye on it" which was a mistake. Mostly because I avoid going to the doctor at all costs. But, when I shake like I have Parkinson's Disease, my vision is blurred and doubled, I have Bell's Palsy and very painful arthritis. Enough is enough. I voluntarily went to a psychiatrist to be checked for "mental illness"...and have checked out. Why did I go? Becuase I wanted the truth. I wanted to be sure I wasn't going crazy. So, is that psychiatrist a quack now?
I did try antibiotics for 6 weeks. It did not agree with me. So, I stopped. My immune system was very weak at the time. However, I may try them again this summer.
Since then, I have been taking a boatload of supplements, which have greatly reduced my symptoms, but not eliminated. So, I personally am not 100% sold on antibiotics. I have learned I have to really work at keeping up my immune system to fight my symptoms though.
You can all criticize me all you want....it has been fun. But, at the end of the day....I have to do what I have to do to get better. If you doctors do not have anything to offer...then fine. If you just want to be a "Atta Boy's Club" and mock but not find the root. So, be it. I am not asking you to be unethical...I am not asking for a diagnosis. Just something other than....its not Lyme Disease. I realize the real answer is probably not out there yet...but, someday it will. And whatever the TRUTH is, I am all for it. Despite your belittling of me, that is the bottom line. Again, research needs to be done. I was asked on what....obviously with so much controversy...alot. I have questions like, how long can the spirochetes stay in the body? Are there other ways to build up NK T-cells to fight it? Can they be killed any other way besides antibiotics? Is that a possibility? I understand a doctors reservation about long term antibiotics...I really do, and a doctor is really going to have to prove to me that that will help me in order for me to do it. I can not stand by and do nothing though. I am not being offered anything else. If I were I would consider it.
So....it has been a fun afternoon of debate. It is nice we live in a country which allows this freedom of speech.
All I can say is....it is very offensive to tell someone that it is all in their head. You can sure offer that advice freely, but nothing more solid without criticizing me of asking for a diagnosis. I just wanted your thoughts. I know this is not in my head...I know it is very real. As doctors, how can you turn these patients away and mock them? Your mockery does not speak well of you.
I just want to get healthy and get back to work!
Oh...and PalMD...I really hope you will sincerely watch the movie with an open mind. Really. Thank you.
First, I am pretty sure that Pal is not denying that Lyme Disease exists. He's denying that CHRONIC Lyme Disease exists. Say what you mean.
Second, the doctor claiming that AIDS was not taken seriously, if correct, should be able to provide peer-reviewed journal articles where this information is chronicled. Please provide links.
Finally, I am under the impression that there can be long term damage in individuals where Lyme is not treated soon enough. What is being contested is that the actual bacteria are still present, and the use of the long-term antibiotic treatments that accompany this mis-diagnosis of CLD. (correct me if I'm wrong, Pal)
Honestly, if some of these commenters go at their doctors with even half the crazy they brought here, I'm not surprised they aren't taken seriously by a *real* doctor.
Interestingly, some antibiotics also have some anti-inflammatory properties. It's entirely probably that this isn't relevant to the discussion. But this is specifically true of at least one antibiotic class used to "treat" "chronic lyme": the macrolides.
Infact one theory of why azithromycin is useful in cystic fibrosis is it's antiinflammatory properties.
I think this is controversial though, some people think this whole theory is BS. But certainly a point to ponder when considering why a patient "feels better" on antibiotics.
Ref:
Azithromycin increases survival and reduces lung inflammation in cystic fibrosis mice.
Tsai WC, Hershenson MB, Zhou Y, Sajjan U.
Inflamm Res. 2009 Mar 7.
PMID: 19271151
Azithromycin Reduces Exaggerated Cytokine Production by M1 Alveolar Macrophages in Cystic Fibrosis.
Meyer M, Huaux F, Gavilanes X, van den Brule S, Lebecque P, Lo Re S, Lison D, Scholte B, Wallemacq P, Leal T.
Am J Respir Cell Mol Biol. 2009 Feb 24.PMID: 19244203
This is entirely true. I don't think I've ever seen a doctor tell a patient they're treating that "it's all in their head." That carries a ton of connotations that doctors don't think of.
On the other hand, offensive as it may be to tell someone that "it's all in your head", that doesn't mean that every patient who complains of vague symptoms has disease.
Why do you think NK T-cells are required to fight it? I've seen some evidence possibly implicating dysfunction of NK T cells in asthma, possibly diabetes, and possibly some cancers. I have seen no evidence on NK T cells being at all involved with Lyme disease.
Having had two close friends with Lyme disease (neither of which persisted beyond 15/18 months) can I ask if ex-sufferers form part of any study of this infection? The reason is , both of these people- females in their early thirties now- have enjoyed almost 10 years of near perfect health which has other members of their family convinced of a connection with the Lyme disease episode. Is this perhaps due to genetic variation/adaptation? And, sorry to seem heartless to the blighted sufferers, long term anti-biotics haven't and most likely won't cure this condition.I now think that anti-biotics present a very real future hazard to us all because, simply, the micro-organisms will evolve in response to the treatment and we won't. Medical Insurers aren't the issue for once but the "cure on demand" attitude of some people can be addressed...oh and getting angry can prolong the life of the basically healthy older person but it is best avoided by the chronically ill as it uses your body's already overstretched resources in a rewardless exercise as I have learnt from personal (not proffessional) experience. Be grateful you live and breathe...and may your God(s) go with you.
First, I am pretty sure that Pal is not denying that Lyme Disease exists. He's denying that CHRONIC Lyme Disease exists. Say what you mean.
I whole heatedly agree with you. I think he denies CLD...I stand corrected.
What is being contested is that the actual bacteria are still present, and the use of the long-term antibiotic treatments that accompany this mis-diagnosis of CLD. (correct me if I'm wrong, Pal)
I JUST had a new Western Blot done within the past two month. It was CDC positive. Maybe I am getting bit more often and not knowing it? But, I am under the impression that it has been there for twenty years. I am open to being told it is something other than that...I really am.
Honestly, if some of these commenters go at their doctors with even half the crazy they brought here, I'm not surprised they aren't taken seriously by a *real* doctor.
I do see REAL doctors. I see an Infectious Disease doctor and an Internist and they both feel this is very real. The Internist, who I love is not 100% sure what is going on...and he has done TONS of tests. He referred me to ID. The ID doctor says it is CLD.
What more am I suppose to do, but listen to my doctor?
And to the person who posted about antibiotics and inflammation. You may have something there. I have found my CLD is always an inflammation issue. If I can control the inflammation, I can live with the disease. This is why I think supplements are helping. They help with building the immune system and also fight inflammatory issues.
So, is there anything else a person can take to prevent inflammation? Without zithromax?
OK...thank you for posting that!
Ouch!!!! I've never been accused of poor English.......(But when cornered I guess you had to take a cheap shot.) You speak of acquiring an infectious disease to satisfy my anger as silly......What infectious disease?????????I thought Lyme didn't exist?????? If you took the time to study the disease you would learn that SOME diseases cannot be diagnosed by tests.....and Lyme falls into that category......Again, Western Blot is the most accurate but there have been cases that give false negatives and a few months later positives do occur...A competent LLMD can diagnose from symptoms alone......My comment concerning doctors playing God simply means that just because they cannot identify the disease they should not dismiss it as nonexistent or psyschosomatic.....I apologize for my poor typing skills...you see, this old dog is in her mid seventies and a bit rusty!!!!!I I would like for you to meet with a group of Lymies.....There are doctors in the group that have become believers since either they or family members have acquired this heinous disease....(Even Oprah has taken up the cause).........
Again, I'm not an expert, but I think Western Blots check for the antibodies, not the bacteria themselves. So, you can have a positive western, but all that means is that you had the infection at some time in your life. It does not mean you currently have the bacteria in your system.
I would never claim that lyme disease doesn't exist...it very much exists. The part that is controversial is the use of long-term antibiotics in people who claim to have so-called chronic lyme disease, a disorder characterized by many, many different symptoms, and with no clear tests to diagnose it.
And Lyme disease can absolutely be detected by various tests...the problem is which tests and when.
That's not medical advice, just an interesting factoid.
There are a lot of anti-inflammatory drugs that aren't antibiotics.
The important thing is correctly identifying the problem. I would suggest that rather than hang your hat on a controversial at best diagnosis, that you seek a second opinion.
I do not know your history, and am not a doctor (just a medical student). It is inappropriate to offer medical advice over the internet, and I don't know your history, and haven't seen you.
The right thing to do is to get a second opinion, possible from another internist. If they do a good workup, depending on what they find, they may refer you to further specialists.
If they suggest that the appropriate specialist is a psychiatrist (and I'm by no means saying they would suggest that, merely that it's possible) it's not to be offensive or to imply things are "all in your head."
It's to say that some symptom clusters are treated better by psychiatrists, and some problems are better managed by psychiatrists. What do you have to lose by seeing
one, if nothing else is working?
Pat - please see my earlier comment - PAL IS NOT DENYING LYME DISEASE EXISTS.
Oprah has taken up other quack causes - see post to this blog earlier today - all that confirms is that she's not a good source of medical information. Shocking, really.
Katie-My reference to Oprah taking up the cause was simply a relief that this disease will finally be made aware to many people and maybe--just maybe some funding will be allocated to find a cure and end the suffering of now thousands of people! I in no way felt that Oprah was a source of medical information....but she sure has the ear of millions of followers!......Yes, there are many,many diseases with similar symptoms.......However, many of the symptoms are unique to CLD....I really believe that until some of the naysayers have family members get the disease there will never be an acceptance of the diagnosis....Pitiful, really......tragic also for the sufferers...
What I don't think you understand, Pat, is that funding has already been spent. This has already been studied. So just as Oprah hosting Jenny McCarthy and her crazy vaccine-autism relationship ideas didn't lead to more money being spent researching that idea (since it's already been disproven), Oprah taking up the CLD cause won't result in more money being spent studying CLD (because it's already been disproven). She may have millions of ears, but fortunately the uneducated masses don't determine how research dollars get spent.
Katie----Please tell me how and where this money has been spent? Columbia just this year has started research on a cure.......What do you know that the rest of us don't???And sorry, I certainly maintain that the more exposure a disease (or anything else has) the more likely money will be funded for research......Are you implying that CLD has been disproven????I suggest you meet with the sufferers before making such an erroneous statement! One thing is for sure, there are many excellent doctors who are able to think "out of the box"...Hopefully, a cure will be in our generation!
A quick pubmed search shows that many studies have been done, and have found no evidence for CLD. It's not what I know that you don't. It's what I (and other scientists) accept that you don't: CLD has already been disproven.
Pat,
Please stop using so many periods at the end of your sentences; There aren't enough left for the rest of us; That's why I'm having to use semicolons;
Seriously, if you don't want to seem like a kook, stop writing like one.
Finally, are you implying CLD has been proven? Please be so kind as to point us to the evidence.
NOTE: I am not denying that your daughter has the symptoms you claim. I am asking how you know that it's CLD, and not something else? Because you read some web site? What if there's no such thing as CLD, and your daughter's symptoms are caused by something else entirely. Do you really want to insist on money being spent to research CLD?
If your daughter has a problem, the research should focus on finding and fixing the problem, whatever it is. Deciding in advance that it must be CLD, and refusing to even consider any other possibility, is NOT going to help your daughter, or anyone else.
Please stop with the trivial insults. It is not fair and takes this debate to new lows.
We are not kooks.
For the better part of four years my daughter has visited the BEST medical centers in the country....She was diagnosed with Als, Fibromyalgia, Parkinsons, drug-resistant ecoli, etc...
Each time she entered one of these nationally revered centers she was tested for all of the above (or whatever the "brilliant, reknown" doctors assigned to her case determined it probably was).......Unfortunately, the results were always the same...Oh, yes, I forgot to mention Aids..When we received the same answers and she continued to worsen with her symptoms we were no closer to an answer than when we started..In between all these powerful famous medical center visits she saw local doctors who simply put her on antibiotics--one put her on prednisone for 2 months to stop the facial twitching..Did it help? God,no! It was then that I questioned why they were testing for Aids and she told me of the "very compromised immune system"...Thus I found very similar symptoms that suggested CLD....Get further opinions???? I think we exhausted every top medical facility
in the country! No, we're not kooks....Yes, the Western Blot test was positive...very positive...On top of everything else,the expense is unbelievable....Insurance doesn't cover the testing because "the disease doesn't exist".....She is attempting to boost her immune system by diet, supplements,etc...She has had a bit of luck(or relief) using hyperbaric oxygen treatment....When she is feeling very poorly her lymph nodes are very prominent...(But I guess that might be her imagination--and mine too)....I could go on and on....one of her acquaintances with lyme died recently...but I guess that really didn't happen either....we just imagined it! I guess I just imagine the facial twitching too...Oh well, CLD sufferers be damned....they all have vivid imaginations and just like to "imagine" they are suffering....
If I had a condition with the symptoms claimed for 'Chronic Lyme Disease' for as long as Ms. Sampson has mentioned that she has had those symptoms I would be an expert on what is actually known about Lyme disease and why physicians do not generally regard 'Chronic Lyme Disease' as a useful diagnosis. This would not be because I would be 'taking sides' on the issue, it would be because I want to know _everything that is *known*_ about my condition and what _might be related conditions_.
Unfortunately too many people do not educate themselves about their medical conditions - instead of attempting to understand the world as it is they instead retreat into an ironic wish-fulfillment and insist that they have the answer when they don't even understand what the questions are.
Pal, I was wondering how many patients you as an internist have treated for Lyme Disease. Have you seen firsthand how their multi-organ ailments have limited their daily lives? Have you seen the emotional damage living with such conditions has caused?
Yes, I have Lyme as well, and can remember when I first began to become ill, nine years ago. I now have hypoglycemia with high blood sugar episodes, autonomic dysfunction, thyroid dysfunction, pituitary dysfunction, and MS-like neurological symptoms. When I was diagnosed with Lyme two months ago, I was skeptical that was what was causing all my symptoms. But how can someone perfectly healthy (until infected with Lyme and left untreated) then suffer such multiple-system chaos? I am 28 years old and have lived a healthy lifestyle with little family history of anything significant. There are days that I can't walk and the next day my legs are fine but I stutter when I speak. What of the research to connect Lyme with other degenerative neurological diseases such as Parkinson's and Alzheimer's? How much reading and research have you done when it comes to proving chronic Lyme Disease does not exist?
One frustration about CLD being denied by doctors is that Lyme Disease even at early onset is being denied by doctors as well. Here is a link to a blog by a DOCTOR in Scotland in such a situation:
http://writingcraft.blogspot.com/2008/05/lyme-disease.html
If it isn't Lyme when it's a positive test, a tick, and a bullseye rash, and it isn't chronic Lyme when a perfectly healthy person becomes an invalid, then what is happening to all of these people who report the same pattern of symptoms with the same pattern of being infected?
In your article you wrote: "Part of the allegation was that there was a massive conflict of interest. You see, because the guidelines recommend against long-term antibiotic therapy, insurance companies often will not cover it. Some folks see this as a vast conspiracy." Actually the conflict of interest was believed to be because "6 of the 14 authors of the ISDA guidelines hold patents associated with Lyme or its co-infections" or "4 of 13 have received funding from Lyme or coinfection test kit manufacturers" or "4 were paid by insurance companies to write Lyme Disease guidelines or service consultants in legal cases" still others "received money from Lyme Disease vaccine manufacturers" - according to the film "Under Our Skin".
I'd like to ask about links to the scientific evidence that disproves chronic Lyme...I don't think I'm psychosomatic, given I just learned I have Lyme two months ago and have been suffering for nine years, but I am not eager about joining the ranks of the overdramatic and unethical, either. I just want my symptoms to stop, to go back to a normal life where I can work and be well and take care of my three children, and while doctors and politicians are at war, I have no hope of that ever happening.
Kim,
Pat,
You've both referred to Western Blots. I assume step 2 on this page is what you're referring to?
www.cdc.gov/ncidod/dvbid/lyme/ld_humandisease_diagnosis.htm
If so, could you also tell us what the ELISA and/or IFA test results are? If not, could you please provide a reference to what test you are speaking of? Either way, could you please provide more specifics on the lab results you believe indicate the presence of CLD in your case, including numbers and related data?
Further, what symptoms are exhibited that are inconsistent with the description on this page?
www.cdc.gov/ncidod/dvbid/Lyme/ld_humandisease_symptoms.htm
Finally, and completely unrelated to your claims, what's with the overabundant use of ellipsis?
Katie, you were close on the Westerns; they use antibodies to detect the presence of proteins in a given sample.
Kim and Pat, put some time and thought into your posts and it will make it more difficult for people to make fun of you for trivial things such as grammar.
Will you people stop ostracizing people who have psychosomatic complaints. All of you talk about psychosomatic patients as if they're just fakers. It's ridiculous. Psychosomatic disorders are a legitimate problem, that sometimes require treatment by a psychiatrist.
There's a huge stigma about mental illness in this country and you guys are contributing to it by acting like you'd rather have a mysterious unprovable disease rather than even the possibility of psychiatric issues.
Having just spent some time on psychiatry, it's really insulting to a whole profession that devotes their lives to trying to help with such problems. It's even more insulting to the patients who live their lives with these problems every day, who you've written off as somehow less legitimate than your problems.
"Will you people stop ostracizing people who have psychosomatic complaints. All of you talk about psychosomatic patients as if they're just fakers. It's ridiculous. Psychosomatic disorders are a legitimate problem, that sometimes require treatment by a psychiatrist."
I don't see the medics here ostracising or belittling a psychosomatic diagnosis. I see the commenters identifying themselves as sufferers belittling the psychosomatic diagnosis:
"She was tested repeatedly in these "tremendous" clinics for Aids, Parkinsons,fibromyalgia, etc.--only to be told it probably was psychosomatic!!!!!!!"
So for some sufferers, 'psychosomatic' = 'all in your head' = 'nothing wrong'. But that's their *own* interpretation (possibly reflecting a public perception), not that of their MDs.
Noone commenting has at any point denied that the sufferers' symptoms are real, that they exist. They only dispute the best way to describe them, and the best way to treat them.
People seem to misunderstand the meaning of psychosomatic. Psychosomatic symptoms are NOT imaginary - the second half of the word pertains to the bodily manifestation of the problem. These illnesses can be quite debilitating in a physical way; however, if the cause of the disease is psychiatric, treating them with antibiotics won't work in the long term.
Personal story: a close relative at one point suffered from a range of slowly escalating symptoms - bowel problems that caused him to lose 20 pounds, sinusitis, sleep problems - which he insisted that his doctor treat as purely physical phenomena. It wasn't until he began contemplating suicide as a relief from symptoms that he accepted that he was in need of psychiatric treatment, which fortunately saved his life. Not coincidentally, his physical symptoms declined in concert with his psychiatric symptoms, although he did not take any medication to treat them independently of his mental illness.
To be clear all my quotes were cld advocates, not medics
That was really my point.
My apologies if it appeared to be critical of the proscientists
the cld advocates are ignoring all of the other possible explanations of thier symptoms.
Rather than legitimately even consider psychiatric workup, they've belittled the field and those involved in it.
Whitecoat - I don't think that anyone is insulting the mental health professionals. You have to understand that when your life is turned upside down by these very debilitating symptoms, it's difficult to believe that it might be psychologically generated. Has the possibility of a psychological aspect been studied in regards to Chronic Lyme?
I spent five years in psychotherapy to deal with depression and some other issues so I don't fall into the category of those who won't seek professional psychological treatment. And yet, I am still debilitated with physical symptoms and no definitive diagnosis or treatment. Believe me, my internist was as frustrated as I. She finally had to admit that she didn't know and sent me on the rounds of a multitude of specialists. I still have no definitive answer. One thing for sure, it is not psychosomatic.
It has been stated that studies have been done on Chronic Lyme and it has been disproven. The problem is that there are many patients out there with a cluster of identical symptoms. Can a psychosomatic illness fall in cluster of symptoms that identical in multiple patients? I'm really curious.
What would be your next move if it was determined that these patients are not psychosomatic?
I, along with Kim and Pat are patients, we're not scientists. We can't cite the literature and any attempts at becoming experts on the subject will fall short. Can you cut people some slack and not call us kooks? I would expect some empathy from health professionals.
reminds me of post polio syndrome
I'm really a military commenter, I would much rather talk about China's MRBM anti-ship missile. But I have a passion for facts and an affinity for people.
I believe Kim, Pat (Pat's daughter) and Suzanne are genuinely suffering from something. I have no way of knowing what is the source of their malady. It may be psychosomatic, it may be a bizarre immuno compromising condition, it may be any number of issues. They claim to have visited a number of practitioners, including mental health professionals, and found no relief. Thus they have now delved into the world of suspect diagnosis (CLD, CFS, fibromyalgia, etc.) and CAM treatments.
Medical practitioners should be asking themselves why. Was there a bad experience with a doc which turned off these people to a scientific approach to their condition? Is the need to find some cause, any cause, necessary even if it's wrong?
Suzanne's last post is the most interesting to me. Can a host of psychsomatic symptoms fall in a cluster identical in multiple patients? The answer is simply yes. The power of autosuggestion is potent and can be exacerbated through current mental state. During my undergrad work in psychology, we were cautioned during our abnromal psych class to be aware of the possibility of feeling like we "hed the condition" about which we were studying. The human mind is a powerful mimic and can take on real symptoms simply throught suggestion.
There are several conditions Munchausen's, Munchausen by Proxy and others in which symptoms are created (physically and mentally). I think the best approach is one in which a medical doctor and mental health professional work in concert to assist these types of cases
First, I would like to say thanks to post 29. I would like to see one of the so called Infectious Disease doctors get bit by a lyme disease infested tick and take their recommended dose of antibiotics and see what happens. Believe me when I say that I am not vicious and really mean no harm to anyone and seeing how they don't believe in long term infection then no harm intended.
I was a healthy, atheletic mom of two who use to laugh and enjoy life and my two sons. After a vacation in Maryland's beauitful shores last summer got on a plane home with fever and infection. It took 3 months, lots of specialists and lots and lots of money (health care costs skyrocketing hmmmm "I wonder why!") diagnosis lyme and babeosis. I never saw a tick did find a sore in my head though and didnt think anything of it, because by the way the did I mention the cute little shops in St. Michael's Maryland does not mention tick danger to the masses of tourists visiting. I am still sick and it is almost 8 months. It cycles, I will feel pretty good and then bam I am back to feeling the worst fatigue ever and nauseated 24/7. The thing that gets me the worst is that I cant be the mom I want to be!!!!!!!
I don't care about the fighting between this group and that group. I am not 80 years old but my medicine cabinet would say otherwise. This is not in my head. I am not a hypocrondiac - What an easy fix that would be - I would be delighted to say that is my diagnosis but unfortunately not true. All I want is money to be spent researching this disease and finding a cure. I did not get on antibiotics right after being bit because I didnt know I had been bit. I understand this be true in lot of cases. I am not here to be an advocate only for myself but for the people suffering now and to prevent future suffering by people inflicted. The author of this article should try to be objective. He bashes Dr. Stricker but does not mention why the infectious disease society of america has even agreed to elect a new panel and look at their guidelines. If they have nothing to hide why bother? I am sorry but my head is not in the sand and never will be. But voice will not be hushed. I intend to get well and continue to prevent anyone from going through the HELL I have lived for the last 8 months.
Don't present an opinion unless it is fair. Give both sides equal representation. You bashed the side that believes in chronic lyme disease and glorified the other side. I believe journalist have a duty to represent both sides. There is always another opinion. You say you represent facts. One hand pick one that puts a bad light on one person. There is alot of doctors on the Lyme Disease Soceity of America's board. Why not pick one that is a shining light. Incidentally, I do not know Dr. Strickler so I can not judge him or say that what you quoted is fact. Why not further research why the Infectious Disease Soceity of America agreed to go through the trouble of picking a new board. I am sorry but if looks suspicious it probably is. I know personally for me I would'nt agree to do something so tedious unless I felt compelled to do so. Look at the numbers of lyme disease on CDC web site (by the way they are not accurate) and get involved in the thousands of web site and see if your opinion is still the same. After all it is just that your opionion. Thanks for you time.
Lyme Disease exists. No one is arguing this. I've had it twice, been treated by the normal course of antibiotics, and have no lingering effects.
CHRONIC Lyme Disease, where the bacteria remain in the system causing symptoms post treatment, DOES NOT exist. The IDSA is constantly reviewing, revising, and updating its policies as we learn more about diseases. This is not suspicious. This is how science works. And, despite the new review, the policy regarding CLD was not changed, because there was still no evidence to support the existence of CLD.
Permanent damage from untreated Lyme infections does exist. This is not CLD. Therefore, it cannot be treated by long courses of antibiotics. Treating people in this way will not help them, and can in fact cause serious harm, both to the patient and society.
I can not believe this debate is still continuing and so heated...so petty.
First..."Finally, and completely unrelated to your claims, what's with the overabundant use of ellipsis?"
I am a TV News Producer. This is how we write for broadcast news. If you want to judge me for that...all I can say is how pathetic!
If you really want to judge people on how they write...that is pretty low. I mean, it is VERY important to include facts...that is a must! But, am I a kook now, because of my writing style? If Brian Williams or Charlie Gibson were writing on this...they would probably have the same writing style. Would you judge them and call them a kook? Everyone in my newsroom write just like this. I guess ABC News is just a bunch of kooks!
Really, what does this have to do with Lyme Disease other than making it about a personal attack? Debate is a good thing...it brings people together to get ideas from all points of view. I think it is good. I certainly learned things from this about Western Blots and inflammation, so I would say it has been good, except for the petty personal attacks. Come on! Grow up!
I am going to consult a psychiatrist TODAY about the psychosomatic claims. I am seriously going to go talk to her and keep an open mind about this. I have already once been cleared of this, but I am going to open that can of worms again today. Why not? I just want truth, despite what many people are accusing me of on here.
AND...I am not "dissing" people with mental illnesses. I have people very close to me who suffer from mental illnesses...I know the pain and suffering they also experience. Their disease is very real. So, I do not have anything against a person with mental illness. I am probably one of the most compassionate people when it comes to these disorders. I just don't believe it is part of my issues, but I am going to ask again today...with an open mind. And, if she says it is, I'll get treated for it.
I was asked to post my Western Blot and ELISA results. I am not going to do that. All I can say is I have had positive ELISA's and CDC positive Western Blots...what more do you need than that? Are those results not good enough for you?
So...people, quit attacking me for my use of punctuation. For believing in something that may or may not exist. (some say God doesn't exist either...that it has been PROVEN He doesn't exist, but I still believe in God and Jesus Christ very much....am I a kook there, too?)
As I have said MANY times in this post. I am sick. I have many neurological symptoms which prevents me from producing the news. I just want to get healthy and get back to work. As a journalist, I am open to all sides of the story. I am not hung up on any one theory. Why? Becuase i don;t think anyone knows the REAL answer yet. I believe research needs to be done to find out what is happening, and both sides may be surprised at what this really is. I am open to that. I just want truth and I want to be healthy again.
What I will not do is just accept that this "does not exist"...and sit and do nothing because no one knows what to do. I am going to look at EVERYTHING that could be causing this. I believe the tick bite is the root of the problem, so call it whatever you want....CLD, inflammation disorder, neurological disorder...I don't care...I just want to get healthy.
I you have other suggestions, I am open to them. I just want to live a life in which I can work and enjoy my kids. It's that simple!
Please, stop with the personal attacks, especially about grammar. No one needs to stoop so low as to attack somebody who doesn't agree, just about grammar.
Katie...I just want to thank you. I may not agree with you 100%, but you have given me things to seriously consider and I thank you for that! =)
I haven't attacked you for your grammar. However, you should keep in mind that, on a message board, your entire representation of yourself is through what you type. If you do it in an uneducated and annoying way, that is how you are representing yourself. It certainly won't help your cause.
I have a problem with the label "psychosomatic" in that I think its meaning is way too fuzzy and it is over-applied. However, the brain certainly plays a big role in physical well-being.
Some of the problems with un-validated diseases such as chronic lyme or morgellons is not that they don't exist---it is that desperate people get sucked into these diagnoses after months to years of unsatisfactory answers.
The problem is that if you are willing to accept a diagnosis that is unlikely to be true, you automatically rule out any other explanations.
Certain symptoms such as fatigue, "brain fog", and pain are very subjective, and naturally wax and wane--it's fairly simple to blame them on anything, and since they wax and wane, I can claim (false) credit for improving them no matter what I do.
More clear anatomic and pathological problems don't usually stay mysterious. If there is a swollen joint with a lot of fluid in it, it can be evaluated. If there is a rash it can be biopsied.
Kim - I'm glad. I do hope you find a cure for your illness. No one should have to live with those symptoms. I wish you luck.
Katie,
I hope you realize, I never said you attacked my grammar. It was others.
"However, you should keep in mind that, on a message board, your entire representation of yourself is through what you type. If you do it in an uneducated and annoying way, that is how you are representing yourself. It certainly won't help your cause."
I just want to know how my writing in broadcast news style is "uneducated"...I would think a TV News Producer would be very educated. And, I am. We purposely write in a way that is EASY to read.
It is a style...it should not be judged as being "uneducated." I am a professional writer!
And, PalMD...I agree. I am not getting tied to any one diagnosis, but I am going to look at everything until my condition improves! I have to, no one else is going to take care of me, except for me. I was bit twenty years ago, but my neurological symptoms have been bad for about two years.
Again, I just don't think we know all of the answers yet. I am going to try to uncover them...I am not a doctor, but I am a persistent journalist! =)
All the best to everyone here, I hope the dialogue has been good for everyone. it has certainly made me realize a few things that I want to look at more closely! THANK YOU!
Kim,
Try not to assume things. I said "completely unrelated to your claims" for a reason - I was asking a question about your writing style, nothing more and nothing less.
No, they're not. I need to know what proteins you tested positive for and which ones you tested negative for. Even better would be numeric results.
What ARE the symptoms? I asked three questions, not two.
I can not say anything about your condition without, at the least, the information I asked for.
Tessa,
Suzanne,
Could you also reply to my post at 56? The third question obviously is not relevant to the two of you.
Kim,
If you really want to judge people on how they write...that is pretty low. I mean, it is VERY important to include facts...that is a must! But, am I a kook now, because of my writing style? If Brian Williams or Charlie Gibson were writing on this...they would probably have the same writing style. Would you judge them and call them a kook? Everyone in my newsroom write just like this. I guess ABC News is just a bunch of kooks!
Charles Gibson does not write like you and neither does Brian Williams
But you know who does? The THE DRUDGE REPORT!!!!!!!!!!!
Looking at a lot of the CLD-syndrome sufferers, a lot of it sounds like a low grade MS (my mom lived with it for 35 years, I've seen most of the symptoms described on her). The problem is - if you call it CLD and go aggressively after an infection you're doing just the opposite of what you'd be doing for an autoimmune illness. So, there is a huge risk of harm is the CLD turns out NOT to be an active infection. Thinking to have the answer for a disease without a clear diagnosis and acting on that basis can be just as harmful as not doing anything at all. Since doctors are usually treating under the "first, no harm" approach, giving out dangerous treatments without scientific basis is a non-starter.
As for the basic dispute, I believe you have the right to any treatment you want, but this is not the case of a refused experimental treatment. This is mainstream science rejecting a treatment after study. And therefore, insurances rejecting the treatment as ineffective.
There are plenty of doctors out there that will write you a prescription for your treatment of choice, you just want society to pay for something that's been shown to make no difference.
Sorry, there are too many people out there that can benefit more from our health care dollars by proven treatments they can't afford to waste money on stuff like that.
What is critical to point out is what the evidence currently shows and what it does not.
We certainly cannot say that there are NO long-term sequelae to Lyme disease. This whole chronic Lyme thing is not currently supported by the data, but things could certainly change. Be that as it may, the data are very clear about long-term antibiotic therapy---it doesn't have a significant impact on these cases (one studied showed some statistically significant effect on "fatigue", a symptom which waxes and wanes spontaneously).
Patients with protean symptoms still need evaluation and treatment, just not the wrong eval and treatment.
dreikin - I can't answer those questions because my chronic illness is unrelated to Lyme. My interest in this conversation is that of a patient who has been suffering with symptoms for a long period of time without a definitive diagnosis. Many things have happened to me that the specialists have no answer for. Since we're discussing Lyme here I won't go into my convoluted medical history.
I appreciate the fact that you seem very knowledgeable and genuinely concerned. Patients rarely have the information you have requested, such as what proteins were tested for and numeric results. Once I insisted on a printout and had a friend of mine (who certifies hospital labs) explain the numbers to me and also what they doctor's were looking for. I felt more informed after her explanation. Is this something that physicians should be doing or is it seen as a waste of office visit time? I think patients are looking for more communication and more information.
Finally, perhaps there are people coming to these boards who are uneducated. Should they be fearful of posting? Personally, I was happy to find PalMD's site because I thought just maybe I could learn something and be able offer a patient's viewpoint. If only educated people and those familiar with the studies and the jargon were welcome here, PalMD would have required a registration process that involved resumes and such.
I find it exciting that there are so many science blogs out there. The scientists must be prepared for the fact that the scientifically challenged will be visiting and commenting.
Anyway, where's House when you need him? HA.
On with the discussion.
Ping!
Ms. Sampson,
I was one who made a snarky comment about writing style, although it wasn't specifically addressed to you. I apologize to you and to Pat for that. It was uncalled for.
I had no idea that was a 'normal' writing style in TV news production. Pat, is that a normal writing style in your workplace as well? I can see how it might be suitable for ticker feeds, or to give announcers direction on where to insert verbal pauses. You may think it's easy to read. I don't, but no matter.
FWIW, I have seen similar writing styles online in the past, and it seems to me they are usually being used by people zealously defending claims that are at least unconventional and unproven, and frequently wrong. The folks who insist that vaccines cause autism come to mind. Now I wonder whether most of those writers come by that style through their work, and if so, why do I perceive a link between that writing style and kookiness? I don't dismiss the possiblity that it's my own bias, and I resolve not to jump to such conclusions in the future.
Again, my apologies to you and Pat.
To Dreikin-
Try as I might I couldn't get the
To Dreikin-
The site "www.cdc.gov" etc. could not be reached by me. If you could give me another site for the Lyme symptoms I would appreciate it! As for my daughter's Western Blot test results, her LLMD called me and read them over the phone (we live 1500 miles apart) and this was more than a year ago. He gave me his assurance that she certainly tested positive. Since then we have both read all the literature on CLD we can garner and, I might add, tried many Lyme aids that have helped others. She has the neurological symptoms of the disease and is willing to try "almost anything" that has helped others get some relief. There are times when she's quite hopeful, but she certainly has improved greatly since last Christmas! Her positive outlook is very helpful and has proved beneficial to other sufferers. Again, give me another site and I will gladly answer your questions!
;
CLD sounds a lot like what some people call Morgellons. That is characterized by chronic itching. The chronic itching of primary biliary cirrhosis is (sometimes) largely relieved by an SSRI such as Sertraline. That does not mean that the chronic itching of primary biliary cirrhosis is psychosomatic or âin the patientâs headâ.
My suspicion is that primary biliary cirrhosis is (sometimes) characterized by hypersensitive mast cells which cause itching when they are triggered. Serotonin is a compound that triggers mast cells (that is why serotonin is used as itching powder). If serotonin metabolism in the skin is out of whack, it might trigger itching. An SSRI might relieve itching by normalizing serotonin metabolism in the skin without having any neurological effects.
The mechanism by which SSRIs improve depressive symptoms is not known. Many instances of depression are characterized by neuroinflammation. There are plenty of mast cells in the brain, with close enough proximity to neural tissue to affect it. Reducing neuroinflammation by reducing the sensitivity of mast cells in the brain would likely help disorders characterized by neuroinflammation.
The efficacy of SSRIs on things such as delusion of parasitosis may not be because there is something psychosomatic going on, but because if you relieve the itching (by normalizing serotonin metabolism in the skin), there is no reason for the brain to come up with a reasonable explanation for itching.
If someone is unwilling to try an SSRI because they feel very strongly that the symptoms are not âin their headâ, they may be stuck with disrupted serotonin metabolism in their skin that leads to chronic itching.
Last night I mentioned that Columbia University Medical Center had started a research center to explore treatment for chronic lyme. I found the site on the internet: LYME AND TICK-BORN DISEASES RESEARCH CENTER The mission statement from Columbia:The Lyme and Tick-Borne Diseases Research Center was established as the first academic research center in the country to focus multidisciplinary research on CHRONIC LYME DISEASE. In recognition that a growing number of patients experience ongoing or relapsing symptoms after having been treated for Lyme Disease and in recognition that diagnostic tests are plagued by both false positive and false negative results and rarely provide definitive information about the presence or absence of active infection, the mission of this center is to focus research on identifying better diagnostic assays, better treatments, and a better pathophysiologic understanding of the mechanisms of symptom persistence so as to enable the development of more effective treatments.......Culminating many years of fund-raising efforts, the opening of this center represents a major achievement by many generous donors who banded together to fight against this rapidly spreading disease. These two organizations recognized that patients with Chronic, persistent symptoms were not included in most Lyme research studies even though these patients with later stage symptoms were often the most disabled by the illness........The establishment of this center is the first step toward ensuring that leading researchers at one of the foremost academic research centers in the world are given the resources to focus their research efforts on unraveling the mysteries of CHRONIC LYME DISEASE....I might add that the research team is one of the more impressive teams in the country!! Along the chronic lyme discussion is the news that that Connecticut has passed the Doctor Protection Bill, no more will the good lyme-literate doctors in Connecticut be stopped (even arrested) for treating Chronic Lyme Disease.(It passed the House and is expected to pass the Senate) (Yes, finally it is happening)
Dreikin:
I am not sure why you addressed this to me. I tested positive for lyme and babeosis by Igenex. I have also tested positive on band 41, 23 and 31 on what one of my doctors calls a junk lab. I have been tested for MS, ALS-You name it - I have been tested for it. Do you know any other disease that makes weight melt off of you 13 pounds in a period of 7 weeks, excruitiating wierd headaches, ear pain, knees hurt, wierd rashes and the list goes on. I am not here to argue - I just would personally like to prevent anyone from going through the hell I have been through! I would like to see signs in windows in epidemic areas warn tourist (who are not aware of tick danger) of the danger of tick diseases. Is that so much to ask?
After researching Lyme disease for four years for our documentary, UNDER OUR SKIN, I believe that there is an abundance of peer-reviewed evidence that shows that some strains of the Lyme bacteria can survive after 2 to 4 weeks of antibiotic treatment.
For non-scientists, I'd recommend reading "Metaphysical medicine: The murky meaning of cure" http://blogs.psychologytoday.com/blog/emerging-diseases/200902/metaphys….
For scientists, read the full text of these articles:
1. "Persistence of Borrelia burgdorferi following antibiotic treatment in mice." Barthold (UC Davis) PMID: 18316520
2. "High-Virulence Borrelia burgdorferi Clone" www.cdc.gov/eid/content/14/7/1097.htm
Luft (Stony Brook) and his article on antibiotic treatment, PMID: 8610947
My posting, "Chronic Lyme: Real or Imagined" briefly discusses the potential conflicts of interests of one vocal researcher who claims that chronic Lyme is all in the heads of patients:
http://underourskin.com/blog/?p=137
I was bitten by a tick and not diagnosed with Lyme until a decade later. Why is there even a question "if" chronic Lyme exists? Isn't it common sense that a bacteria does not go away on its own? If left to replicate, the bacteria does just that, and you're left with an advanced disease which they call "Chronic Lyme Disease". There are those who were not fortunate enough to get a diagnosis and treatment quickly. Without a keen doctor, you're out of luck when it comes to Lyme.
While it's true IDSA didn't agree to change their guidelines they did agree to review the panel members and their possible conflicts of interest. One can see how a minimal treatment recommendation of 21 or 28 days of antibiotics might be questioned when you find out that some of those same panel members consult for insurance companies as well.
The other problem with the guidelines is the assumption that the standard course works without any room for failure. Certainly that should be the case but it isn't always so. There are situations where a person has an ear infection or a sore throat and after the recommended course of treatment they come back because, for whatever reason, they are still sick. I guess if you can still see the ooze in someone's ear or the white patches in their throat it's pretty easy to say the first treatment failed. Because Lyme disease testing can't tell the difference between an active infection and a previous infection (if it detects infection at all) there really is no way to know if the treatment worked.
Adding to this ticks can also carry more than one bacteria... Bartonella, Ehrlichiosis, Rickettsia to name a few. In some cases it can even carry a parasite called Babesiosis which requires two antibiotics at the same time that are meant to kill parasites, not bacteria. Should a patient show up with a bullseye rash, fever, flu like symptoms, etc. the doctor will probably diagnose Lyme and treat that only. If that person has Babesiosis as well as Lyme he/she isn't going to feel better after being treated for Lyme because the antibiotics used to treat Lyme have no effect on Babesiosis.
Lastly, when you talk about studies showing no benefits to long term antibiotic use do those studies explain what type of antibiotic or combination of antibiotics were used? Do they say what doses where given? Most of the people being treated with antibiotics long term who have seen results will tell you they were on not one but many antibiotics at the same time and in higher doses than what is considered the standard treatment.
And before you lump me in with all the "chronic lyme whiners" or someone who's latched on to Lyme to explain all that ails me I'm not. If anything I'm someone who suffers from late stage untreated Lyme. I went to my doctor seven years ago with a bullseye rash and was told it was nothing. I was sent on my way with a topical cream for my foot and told to use bug repellant next time I went fishing. When I showed up three weeks later covered in rashes, fever and flu like symptoms I was told it was just a summer flu. I did go back after that when I suddenly started forgetting things, couldn't sleep yet felt exhausted, depressed, etc. I was told it was stress. Nothing an anti-depressant couldn't fix.
I've been to the doctor maybe four times in the last six years and I don't even know if they would all count (just in case your keeping a complainer tally). Once for a routine PAP, once to discuss quitting smoking and once because I fell and broke a bone. I never go to the doctor when I'm sick. I also have diagnosed migraines but I don't ask for help with those either. I've always kept my problems to myself. After this issue came up about possible Lyme my doctor ordered some tests. An MRI of my spine showed that I have arthritis. I haven't bothered to call him back yet because I'd rather just deal with it on my own.
I know as a doctor you are probably sick and tired of these constant complainers but I would hope, as a doctor, you would look into other factors that might make treating people with Lyme more difficult. Try not to assume that if a person was treated for Lyme and still claims to feel sick that it's all just something they are imagining. There's always that possibility that the treatment didn't work or that the person has more than one infection.
If only the man who said, "Data is not the plural of anecdote," was celebrated on Oprah... (and I really struggled over using that elipsis).
To the commenter writing about their "LLMD" -- that's your self-proclaimed "expert" on Lyme disease? Saying you are "Lyme literate" doesn't make it true; and insinuating that MDs that require proven scientific method to reach conclusions are somehow Lyme "illiterate" is wrong. It's like saying your pastor is "God literate" to argue your mutual faith (and if all those atheists would read more of the Bible, they would realize the error in requiring "proof" that God exists).
Generally, people do not require proof of the probable; we require proof of the improbable. We do not need to prove the Earth will *not* be destroyed by aliens tomorrow morning, most of know it is unlikely enough that we do not worry about it. We can find kooks out there that think it will happen, and they even have irrelevant facts to report that "support" their flawed beliefs. (They may even find like-minded kooks on the Internet, then will form .orgs, and will probably get on Oprah.)
Wow, it took you entire year to write that comment? You did know that May 6, 2009 was so "last year", right?