Open letter to ILADS from a former member

Addendum April 4, 2012. I wrote this post when I was coming to terms with my own mistakes. I’m not proud of the writing now, kind of a rant, though I still agree with it in substance. If you’ve reached this page as part of a search for ILADS, please also read yesterday’s post, Integrity, which discusses a new paper that addresses the persistence of Borrelia burgdoreri in Rhesus Macaques, despite long term antibiotics. The clinical implications of this paper support my conclusions. Shortly after I wrote this open letter, I was reassured by the president of ILADS that their guidelines were about to be revised. However, the same guidelines from 2004 are still on their website today. Their approach is dangerous and unsupportable.

The following article was recently published by two of your members, one a physician whose name appears on the ILADS Lyme treatment guidelines list of authors. The pot calling the kettle black!

The IDSA has recently reviewed their document because of legal action brought by Attorney General Blumenthal of Connecticut. Their review committee decided to leave their guidelines unchanged. ILADS refuses to even consider that anything their guidelines say might be misleading to physicians untrained in treating infectious diseases or patients without access to adequate medical care.

IDSA:  Lyme Disease 2006 Guidelines

ILADS:  Guidelines for the management of Lyme disease

In my opinion, both of these documents are ridiculous. Patients are trapped in the middle, collateral damage in a war that is all about politics, self-interest, money, insurance companies, medical licenses. One side says not to treat, other than an irresponsible recommendation for inadequate prophylaxis. The other treat ad infinitum, even if you’re not sure what you’re treating and the patient seems worse. Nothing here about the medical reality of treating a real disease. Seems pretty obvious that the truth is somewhere in the middle.

The ILADS treatment guidelines are a failure in my opinion. They need to be revised to stop harming patients. All these antibiotics you have been fighting so hard for are not the answer. This has been my opinion for a long time and I have written many times to the group before quitting ILADS recently, but was largely ignored. There is a groupthink that has occurred which does not allow a threat to the status quo in my opinion. Because of my blog, I am receiving many, many letters from people who have failed treatment or are failing treatment for TBDs. These letters are only confirming my original conclusions. It is completely heartbreaking to see how seriously people, whole families, have been harmed, physically, emotionally, financially by an incorrect construct. It is a complete and utter disaster. People on both sides of the Atlantic are trying to treat themselves and their children without guidance according to a completely unsupported document filled with dangerous misinformation. It is incumbent upon the organization, which calls itself a medical society, not a political organization or a support group, to reconsider its recommendations. Past time.When I was in private practice, I justified my lack of supporting data for what I was doing by observing clinical results. I expected to see a clinical response in a reasonable amount of time. Also the therapies I was offering were relatively innocuous. I fully believed that with informed consent, it was a decision reached between patient and doctor to depart from conventional treatment. But this is not the same thing. Antibiotics are not jelly beans. They are being handed out to this patient group in a completely indiscriminate manner often to the detriment of those taking them. Even the lucky ones who get a partial remission generally relapse after a while. And at that point escalating antibiotics does not seem effective for most. Also the patients who consider their treatment successful are often not really so healthy if you inquire more deeply. And that goes for a lot of the treating doctors too, not just patients and advocates. Why are there so many sick doctors in the group if the ILADS guidelines work so well?The reason that this has happened is that for many, antibiotics work. This group generally respond in a pretty straight forward manner when first treated. For another group, antibiotics do move the illness, but are at best a bandaid, especially if they need to be continued long term. Not that bandaids aren’t useful sometimes. But judgement seems to have been lost in the treating physician group. That’s the biggest problem as I see it. Kill, kill, kill, something. It hasn’t worked. Will never work. Patients should save their money and go to the beach. They’d do better.The disease is a relapsing remitting process all on it’s own. If you give absolutely no pharmaceutical treatment, just lots of good food, fresh air, reduced stress, supportive therapies, many get better. Incompletely, but I got better results with biofeedback and oxygen therapy than I am seeing in the antibiotic group now. I am not in practice, but fate seems to be providing me with a “clinic without walls” of a sort and my message today is that these patients have been worse than neglected. They have been completely screwed by their doctors, conventional, LLMDs, alternative. It is truly pathetic!I appreciate fully how difficult it is to do clinical research in private practice. And that practicing medicine by adhering to any protocol is unrealistic. But in this case, I think it is incumbent upon the physicians choosing to depart from conventional wisdom to come up with some evidence. It’s been years. Not enough to say it works when so many patients are still sick. And it seems pretty clear at this point that it has little or nothing to do with finding the correct antibiotic protocol. Each doc is out there trying something a little different, and ALL have failed with a growing subset of patients. The more aggressive LLMDs have done the most damage. And they’re not even interested in follow-up in my experience. Time for patients to move on.I have never said that I didn’t believe that some people with missed Lyme Disease respond to longer treatment than a month of Rocephin. However, I do not believe that clinical judgment is worthless to tell who will benefit from longer term treatment and who will not. There is an idea in the treating physician group that if you keep pounding away at it, a large number of people will get better because of years of treatment. There is not a shred of evidence to support this idea. Complete myth. It is just as likely or more likely that those patients who did improve did so slowly on their own, despite their treatment. Also, this improvement rarely means a return to former health and function. It is much less clear cut than that.

I have no problem with a few months trial of antibiotics for a patient who has been chronically ill and undiagnosed for years who has positive Bb serology or some other evidence for an active TBD. If there is a clear clinical response, then treatment for that person must be individualized. Probably that patient should be maintained on some regimen if they relapse and respond a second time, because it is harder to regain control after each relapse. By the way, in six or seven years of reading the ILADS elist, I have only seen this mentioned once, with respect to analysis of a small number of one pediatrician’s patients. This piece of information might have saved the quality of my daughter’s life, when her antibiotics were stopped the third time, had I known this before a couple of years ago.

Hurting some of your patients because you think you are helping the others is unacceptable. Even if most are really being helped, which is not at all clear. And I think it is not anywhere near most over the long haul. The treating physicians are looking at too small a window of time. Where are all these patients who needed years of antibiotics in order to recover and are now all better? It looks to me like part of the problem is that at one point, Lyme treatment worked better than it seems to now. Maybe those patients are mostly treated by now.Undoubtedly, there has been more XMRV involvement over time. With a few exceptions, everyone I know about is still sick, including most of the sick doctors. And the recovered people I know still have sick family members, especially young people. Preselected group for treatment failure, but if the ILADS approach worked so well, wouldn’t the sick doctors who are members of the group be better? In fact, everyone I know who underwent years of shotgun treatment is sicker than they were five years ago, including people treated by almost every well known LLMD. So how am I supposed to know it works so well? Because of all the pooh-poohing of the mainstream opinion that long term antibiotics do not generally improve the long term outcome? Show me some data. It’s way past time. That’s the elephant in the room.A recent paper by ILADS physicians Stricker and Green, co-authored by an NP and two attorneys, strangely, argues that long term antibiotics and indwelling central lines don’t kill people, so it’s OK to do it. A couple of hundred people were treated for a long time and complications tracked. But no efficacy data was revealed. I wonder why? Bet the statistician had a few problems. With the exception of Brian Fallon’s work, nobody has published anything of significance that I can recall in a decade! I’m sure I’m forgetting something, but precious little. What literature does the term LLMD refer to?Then there’s the money… Holding a life preserver just out of reach to a drowning person while charging them $250-$600 per hour uncovered by insurance is a rather questionable practice for a service you are representing as life saving with no proof. There are very few ILADS physicians who take insurance. Most of the drugs, once you resort to IVs, which can cost thousands per week, are not covered. Patients can’t afford to keep coming back and paying to tell doctors what happened to them. Not that most are interested in follow-up anyway in my experience. Also, almost none of these physicians are available to their patients in anyway when they are really in trouble medically. Maybe that’s worse than no help.The politics and medicine of all of this have clearly been affected by a small number of evil, self-serving IDSA doctors who continue to spout their nonsense. And doctors have a hard time accepting what they don’t understand and a bad habit for blaming the patient when things don’t go well. ILADS should be the side of the good guys. The patients are trapped in the middle and more than a few are being damaged by friendly fire. When you don’t know, it’s a good idea to tell a patient, “I don’t know”. Not there’s a good chance I can cure you. That’s what patients think they are being told when they embark on years of potentially life threatening treatment. Completely misleading.

Again, I am not against the use of antibiotics if they work. My concern is that there are lots of antibiotics being prescribed long term based on faith rather than clinical response. It’s not trying them that is the problem for the most part, though personally I was immediately harmed by antibiotics, but that’s rare. The problem is continuing them out of desperation. Also over time, it appears that most relapse anyway, so that needs to be factored into the equation. You can’t maintain patients on multiple IV drugs indefinitely. And when they come off, the drugs have no doubt done lots of damage in terms of floral disturbance, colonization with resistant organisms, GI damage, etc. Sometimes drug toxicity causes direct damage. I know people who have been permanently damages by quinolones and aminoglycosides that didn’t help their situations. Very poor cost benefit ratio in my opinion. But of course patients should be able to decide for themselves. That decision should be based on something more than impressions. There is not really even a coherent rationale to the guidelines as they now stand in my opinion.

I was disabled for a year with my first big time crash. I recovered enough to have a private practice for most of a decade with no treatment at all except for ARB’s, neurofeedback and bioidentical hormones. If I’d been blasted with antibiotics then, I might not have gotten those good years. Perhaps if nothing had changed in my environment I wouldn’t have recovered at all. Many have found improvement with avoidance of triggers.Without any long term follow-up, it is impossible to say what is the best way to go with antibiotics for any person at any given time. But I believe that the current ILADS guidelines, as they are being put forth and used, are hurting as many people as they are helping. One advocate wrote to me that it was necessary to sacrifice the few for the many. I don’t think it’s so few, but even if many more are helped than harmed, I don’t believe that anyone needs to be sacrificed. It’s the paradigm that needs to change so that the doctors are thinking about the correct disease process.

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8 thoughts on “Open letter to ILADS from a former member

  1. >Thanks very much for starting this blog. It's so difficult to know what to try and what not to try … all we have to go on is the experience of others. I am very interested in the direction you have taken and will be watching eagerly to see how things progress for you.
    Thanks again,

  2. >Thank you for this. I think that both sides are blindly fighting for their favoured treatments and spending little time thinking rationally. I firmly believe that there is no magic cure and that one cure does NOT fit all. How could it? Each patient is different and is affected in different ways. How can any one protocol fit everyone? Realistically, it's impossible.

    I am so grateful to be able to avoid much of this with the help of a wonderful LLND (Lyme Literate Naturopathic Doctor) who is creating a treatment for my son based on HIS needs. He's been getting healthier with no antibiotics (I'm not against them, just the jumping at them at the first chance) and no ridiculous politics, and no misleading promises. Our LLND told us from the outset that what we're aiming for is remission, NOT a faint hope at cure, and he's just as determined as I am to get my son to that point.

    All of those people who talk about cures really should get a dose of reality. There is no way that anything can completely rid a body of a spirochete so small that it can burrow it's way inside of cells.

    Wonderful rant! Keep it up!

  3. >We have a Lyme afflicted friend who was treated at the onset. Now two years later he has tremor in his right hand that looks like Parkinson's. He's uninsured and trying to sort this all out. I don't envy him. It is is a great dilemma.

  4. >After having years of insomnia,Parkinson's like symptoms, memory problems,and finally depression, 8 months of antibiotic treatment followed by pulsing resulted in my current state of zero symptoms for five years now. I also sauna,exercise, and am extremely healthy. I am convinced Lyme has to be treated on a case by case basis-there is no template.

  5. >The average time for a person to get to a doctor who will treat Lyme is 9 years. By that time all conventional and alternative therapies are exhausted. I just started seeing a doctor who will prescribe long term antibiotics for me. It will be 9 years since I became ill in 22 days. I've tried all the mainstream and alternative therapies and changed my lifestyle. I take great care of myself. I am 100% healthy based on MRIs, EMGs, blood work, ect… But I've spent the majority of last 9 years being bed ridden. I had to leave my job 3 years ago. What is there left for me to do? Go to the beach, he says? I can't even comfortably spend a couple of hours with friends on a couch. I don't think this writer realizes just how sick Lyme one makes. If what he says helped him, he wasn't as sick as I am. I've tried every alternative therapy here and in Europe and I've made no progress. In the least, ILAD doctors are no worse than any other mainstream doctor who prescribes drugs long term, as he says, as if they were jellybeans. I've taken over 60 different drugs at this point, not one has helped. That's just the protocol of doctors today for people like me. Why is he not worried about this phenomenon when the majority of drugs I've taken thus far are much newer and far less tested than antibiotics, with many having horrific side-effects and we frequently end up eventually finding out about their dangerous long term effects. The majority of this writeup could easily be modified to talk about almost any newer drug out there for a chronic condition, and we've got drugs for acne and acid reflux now. I'm looking forward to starting my treatment, and remain optimistic about it.

  6. >XMRV has recently been disproved as being significant in any type of undiagnosable chronic illness.

    I've read many success stories about Lyme treatment with antibiotics. Though I've looked, I haven't seen any that are angry or have had horrible consequences as a result of this treatment. So the writer says that these "non-successfully" treated people never see their doctors after the treatment fails. Can they not post their experiences on the internet as well? It makes no sense. I think with time, there will be supporting data, for now we just have success stories.

  7. >Anon 7:02 PM,

    There are successes with long term antibiotics, of course, or it wouldn't be hard to figure out what to do. But many have been harmed by the persistence of LLMDs, trying to kill things without considering the underlying immune dysfunction in the non-responders. Some have posted in various places on this blog about the lasting harm they have endured, and many have written to me privately. I am not in any way opposed to a trial of antibiotics if Lyme seems to be in the picture. It is the advice sometimes given to persist without a positive response that I would caution you about. This idea circulating that if you keep going long enough, you will eventually get better, despite feeling worse, is a myth. A very harmful myth. Gut health is key to recovery and antibiotics are very hard on the gut. Again, I am not saying there isn't a place for antibiotics in the treatment of ME/CFS/Lyme, just that they are being overused by this group of doctors. I hope you are a responder, but please be careful.

    Good luck,

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