Landmark hearing with excellent talks

Yesterday was a landmark day for the Lyme community: An opportunity to try to sway the Infectious Disease Society of America (IDSA) toward a more generous description of Lyme disease and its treatment. The IDSA guidelines are curretnly used to guide the treatment decisions of many doctors from specialists (especially Infection Disease doctors) to family physicians. Insurance companies also sometimes use these guidelines to determine whether to pay for treatment. “Lyme Literate” doctors (termed LLMDs) and groups such as the International Lyme and Associated Diseases Society (ILADS) oppose these guidelines, and it gets pretty nasty at times. I’ve termed this the “lyme wars” in this blog and have a page full of links that illustrate both sides of the issue. Much of my first year with lyme disease was spent trying to figure out what to believe in the face of passionate researchers from both sides writing articles that argue for each perspective, passionate doctors from both sides telling me not to believe the other side, and passionate organizations from both sides fighting to teach patients and doctors alike what to believe so that they will not be mistreated.

The controversy covers almost all aspects of Lyme disease, from whether the tests are accurate, to what is an appropriate prophylactic treatment if exposure to Lyme disease is suspected, to how long Lyme disease should be treated when first diagnosed, to whether Lyme disease can persist past the first reasonably strong/lengthy treatment with antibiotics, to how Lyme disease should be treated if it does persist. At this point, I want to be clear about my own bias here (and I speak as a patient, not an expert or a researcher): I no longer question which side of the controversy I fall on. Based on reading a lot of research articles and my own personal experience I have no doubt that Lyme disease may persist past the initial treatment. While I don’t have personal experience with testing issues I do not doubt that the current tests are flawed. With regard to treatment, I obviously believe that long term antibiotics may help some individuals or I wouldn’t be trying it myself :). I also believe that there is a huge amount that is unknown about Lyme disease including whether it can trigger auto-immune diseases, how to treat cases that persistently relapse, what other drugs (or therapies, including alternative therapies) can help to treate Lyme disease, how to deal with Lyme in the context of a complex of other issues such as mold and co-infections, and the  details of how Lyme does what it does (the microbiology of Lyme disease). More than anything, I hope that we can stop fighting over the trivial stuff so that folks can spend their energy on the really deep questions.

All of this came to a head, after I was diagnosed, when the Attorney General of Connecticut prosecuted the IDSA based on anti-trust violations in the development of its guidelines (many of the individuals who wrote the guidelines had possible financial reasons to want a restrictive definition of Lyme Disease). The case was settled, and the settlement included a requirement that led to yesterday’s public hearings. The hearings had the following format: A panel of individuals selected by the IDSA listened to and question a series of speakers representing both sides of the issue.

Unfortunately, these hearings are only the first step in a multi-step process. The panel that was listening to the speakers doesn’t actually rewrite the guidelines. Here’s the key quote from the opening remarks: “After the hearing, the panel will … recommend one of the following: no change in the guidelines is required, revision to certain sections, or a complete re-write of the 2006 IDSA guidelines. Should our review panel recommend a change, then IDSA will convene a separate panel to carry out that task.”

In other words, all this effort is to convince a panel that the guidelines need to be changed. One hopes that there is enough overlap between the panels that if the panel recommends a portion of the guidelines be reviewed, the second panel will make a real change to them. However it is frustrating to think that the second panel may never even listen to these talks.

The speeches were webcast but unfortunately I  missed most of the speaking. I understand the videos may be made public for review at a later time. For now, it is possible to download the slides and in some cases written statements of each speaker here:

If you only have time to read a few of the talks, here are the ones I found most interesting:

  • Dr. Cameron gives a nice evidence-based summary of all the issues with the current IDSA guidelines. He explains the concept of evidence quality very clearly and then critiques the guidelines on the basis of the quality of the underlying evidence.
  • Dr. Donta spends some time on testing (less interesting to me) but then breaks down what’s know about treatment nicely, going into the molecular differences between antibiotics, in vitro studies, animal studies, and so on as well as limitation to current human studies. I found it pretty hard to follow everything in these slides without a background in his field.
  • Dr. Volkman gives a nice summary of the evidence for persistent infection
  • Dr. Fallon goes into great detail analyzing the three most well known studies of IV antibiotic treatment for chronic lyme: Klempner, Krupp, and his own. The analysis is very interesting. I would suggest downloading his statement as opposed to his slides.
  • Dr. Philips covers many many studies I hadn’t seen before, mostly case studies, discussing specific concrete examples of treatment failures with proven persistence of Lyme post treatment. It’s also interesting reading because he describes so many cases, giving summaries of treatment length and type, when the failure happened, and in some cases what happened next (e.g. patient dies, patient is treated again differently and doesn’t relapse, etc

Yesterday’s “ILADS friendly” speakers all clearly put a lot of time and effort into coordinating a clear and compelling attack on the curretn guidelines. We all owe a big thank you to them, and I hope that their slides will help the next generation of individuals exposed to Lyme disease to get the right treatment more quickly. Unlike myself in 2007, perhaps given access to these slides they will have the knowledge to advocate for the right treatment from the start.

3 thoughts on “Landmark hearing with excellent talks

  1. Great writing! If you don’t mind, I would like to use some of what you wrote on our family blog as well as lyme blog and then link them back to your blog. I am so tired these days when dealing with fighting others on the validity of a lyme diagnosis and it was refreshing to see a similar take on the controversy. May I use your words? and

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