I spent the day July 30, 2009 glued to two computers on my desk. On one I watched the streamed IDSA hearing. On the other I tweeted my comments with other Twitter members with Lyme.

It was an exhausting day but well worth the effort.

In a nutshell, nine IDSA panelists, none of them among the 14 members of the 2006 IDSA Lyme Guidelines committee, heard 18 speakers representing both sides of the Lyme controversy. A few panelists asked discerning questions after most presentations (some speakers went over their alloted time),

Most presentations were a blur of PowerPoint slides overly filled with technical medical and research data. You can view or download slide presentations of selected International Lyme and Associated Diseases Society (ILADS) -supportive speakers at the California Lyme Disease Association (CALDA) website. Included on the CALDA site are links to the IDSA hearing archives.

Note: I especially liked clinical researcher Dr. Kenneth Liegner’s clear, cogent presentation.

The Under Our Skin blog also has a good summary of the hearings.

As a reasonably smart chronic Lyme patient, here’s my take on the hearings.

The ILADS speakers and LLMDs presented solid data refuting the IDSA limited definition of Lyme and recommendations for short-term antibiotic treatment. They made a well-documented case for chronic Lyme being a very real and dangerous illness. This included pointing out serious design flaws in the four small research studies repeatedly used by IDSA as the basis for denying patients long-term treatment.

The IDSA presenters, including Gary Wormser and Eugene Shapiro from the IDSA Guidelines committee, reterated their stance on Lyme, offering no new findings.

I agree with the assessment of science writer Kris Newby of Under Our Skin, who said:

Overall, the weight of evidence for the existence of chronic Lyme far outweighed the IDSA “expert opinion” that the symptoms that linger beyond treatment are due to a “medically unexplained symptom” (MUS), labeled as “Post-Lyme Syndrome” by the IDSA authors.

Unbelievably, one pro-IDSA speaker even went so far as to hypothesize that Lyme patients who remain ill have a “somatic disorder.” Oh, no! Not another “it’s all in your head” explanation. You can imagine the kind of comments that elicited among the tweeters.

The plan is for the hearing panel to spend a few months assessing the hearing information to determine whether the existing guidelines should be kept, edited, or entirely rewritten. The panel expects to complete its review by the end of 2009.

Along with Kris Newby and many others, I’m guardedly hopeful that the hearings will change the IDSA stance on Lyme and it’s treatment. Despite this legally-mandated hearing, nothing so far from IDSA, members or officers alike, indicates that they are truly open to revising their limited and increasingly outdated views of Lyme.

We’ll see in four months.