LYMEPOLICYWONK: Researcher finds IDSA treatment guidelines long on opinion and short on science

Lyme disease is a controversial illness—as anyone with the disease knows. The controversy arises because there is medical uncertainty about the best way to diagnose and treat the disease, poor quality diagnostic tests, and very little treatment research. Out of this uncertainty, two approaches to treating the disease have emerged: one advanced by the Infectious Diseases Society of America (IDSA) and the other advanced by the International Lyme and Associated Diseases Society (ILADS). But both of the approaches are not equal in the eyes of patients. One leaves patients without treatment options when short term therapy fails, as it does all too often. The other provides patients with the option of receiving additional care.

Patients with Lyme disease know how important the definition of an illness can be. We know that the difference between chronic Lyme and Post Lyme Disease Syndrome is the difference between receiving treatment and being medically abandoned. So what’s with all the “new” language at the IDSA hearing about medically unexplained symptoms? MUS for short. No fewer than 3 IDSA speakers use this expression: Drs. Weinstein, Shapiro, and Wormser. It was like they synchronized talking points. First, let me tell you what MUS and PLDS have in common—no antibiotic treatment. Because—guess why? Because the term MUS applies to diseases of unknown etiology— diseases with no identified cause. But wait, you say. Doesn’t Lyme disease have a cause? You might assume that given that the bacteria has been identified, Lyme disease has a cause and isn’t really “unexplained”?

Every now and then you gotta kick up your heels. This year I headed back east for Time for Lyme's GALA. The Young People's Chorus of New York City gave an amazing performance of internationally inspired songs. Actor, Director and Writer Lou Diamond Phillips of Lyme Life gave a compelling speech and a rousing performance singing with the band–including the song LA BAMBA–which had everyone up dancing. The picture is me leaning in to talk with Dr. Luc Montagnier, a Nobel Prize winner for his discovery of HIV, who was honored at the GALA.

In May 2008, the IDSA agreed to re-evaluate its guidelines as part of the settlement agreement for an antitrust investigation by the Attorney General of Connecticut, which found significant conflicts of interest on the original panel, suppression of scientific evidence, and exclusion of panel members with opposing viewpoints. This is the first time a guidelines panel has been forced to re-examine its guidelines under antitrust law.