Les Jones

Things I Didn’t Know About Lyme Disease

Monday, February 11th, 2008 | Science |

A friend from Camp Montvale days writes:

Most of you are familiar with my husband Michael’s experience of the past few years with having an initial diagnosis ALS (Lou Gehrig’s Disease), followed by three years of a very rapid decline. He was confined to a wheelchair, almost unable to feed himself, barely able to speak, and showing the beginning stages of respiratory difficulties. Through it all, Michael maintained to numerous doctors that he had been bitten by a tick shortly before becoming ill, and believed that he had an infection resulting from the bite. He was told by these doctors that he was in denial about ALS diagnosis and sent on his merry way to get on with the business of dying. Those of you who know Michael also know that bit of advice didn’t sit too well with him. So we continued to search for answers, and we finally found them with the help of a doctor in Philadelphia who diagnosed and treated Michael for Lyme Disease. Within a year of intensive IV antibiotic therapy he was breathing normally and having no trouble feeding himself. Within a year and a half he was walking with a cane. Within 2 years he was walking normally and to all outside observers appears completely normal (though he was left with a great deal of chronic pain as a souvenir).

She writes to tell her friends about a new documentary on Lyme disease and its mis-diagnosis:

While the popular perception of Lyme disease is of a trivial joint-related problem easily cured with a few weeks of antibiotics, our characters tell a radically different story. They are forced to live with confounding and debilitating symptoms for months to years, while searching for a diagnosis and effective treatment. As they visit specialist after specialist, so many are told that their problems are stress related or “all in their heads.” Most are misdiagnosed for years with incurable conditions such as chronic fatigue, fibromyalgia, lupus, multiple sclerosis, Alzheimer’s or ALS. And when these patients finally receive a Lyme diagnosis, they ask, What is going on? Why are front-line physicians so ignorant of classic Lyme symptoms and the true size of the epidemic? Why does it take the average Lyme patient more than 3 years and $60,000 to be diagnosed? Once diagnosed, why are many physicians and insurers refusing to provide sufferers with lifesaving treatment? And why are many of the physicians who do treat Lyme coming under fire with the threat of losing their medical licenses?

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