Saturday, June 27, 2009



Q&A: The Lyme Disease Controversy
by Frank DiGiacomoJune 26, 2009, 2:24 PM

If there’s a subject that’s guaranteed to start my wife and me bickering like Elizabeth Taylor and Richard Burton in Who’s Afraid of Virginia Woolf?, it’s Lyme disease. In the late 1990s, after a summer spent covering the Hamptons for the New York Observer, I was overcome with overwhelming fatigue, blinding headaches, an acute sensitivity to light, joint pain and, eventually, intensely creepy muscle spasms and heart flutters that made me feel like I had a baby alien nesting in my chest. My doctor was convinced that I had contracted Lyme disease even though he could find no tick, no telltale bulls-eye rash, and the blood test came up negative. (Current Lyme tests have a high false negative rate.) After a three-week regimen of very strong antibiotics, I felt my old self again save for the still-palpable fear that I might somehow contract the disease again.

My wife harbors a very different opinion of my illness. She finds it hilarious that I claim to have contracted a debilitating disease in the posh Hamptons—especially since I can’t produce any medical proof of my affliction. Her reaction used to make the big veins in my forehead throb—until I saw Andy Abrahams Wilson’s fascinating documentary on Lyme disease, Under Our Skin, which opened in limited theatrical release in New York last Friday, expands to Los Angeles today and a number of other cities in July. By the end of the film, I understood that my wife’s skepticism was hardly unique, and, more importantly, that I’m one of the lucky ones. Wilson, who’s based in San Francisco, does an artful and compelling job of illuminating some very dark aspects of this disease, which, in addition to being remarkably difficult to diagnose and treat, is a subject of considerable controversy within the medical establishment. According to the official definition of Lyme put together by the Infectious Disease Society of America (I.D.S.A.)—guidelines that insurance companies use to determine what treatments they cover—chronic Lyme disease does not officially exist, meaning that Lyme specialists who insist otherwise sometimes risk their medical careers to treat their long-suffering patients. But that’s not the only revelation raised in Under Our Skin. One researcher uncovers a possible connection between Lyme and such perplexing neurodegenerative diseases as Multiple Sclerosis (M.S.), Alzheimer’s disease and Amyotrophic Lateral Sclerosis (A.L.S.). Even more chilling is the movie’s disclosure that a majority of the I.D.S.A. Lyme panel members had potential conflicts or undisclosed financial interests in companies that, for instance, were developing Lyme vaccines and tests.

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