Lyme Disease Treatment | One Woman's Quest for Answers
Now it’s his problem, too. Jones has been charged with diagnosing two children in Nevada with Lyme disease before examining them, and with prescribing antibiotics for them over the phone. Shapiro, his former colleague, a professor of pediatrics and epidemiology at Yale’s medical school, not only brought the charges against Jones but also helped write the guidelines that have narrowed the Lyme disease diagnostic and treatment guidelines. The Hartford Courant once quoted Shapiro as saying that he had had calls from physicians in Connecticut “begging me to see their patients so they don’t have to see Dr. Jones.”On the day I visit, Jones sits at his desk in a big leather swivel chair. On the desk are neat stacks of patient files. For the hearing, which he calls variously a “conspiracy,” a “witch hunt,” and an “inquisition,” his accusers have subpoenaed many of his charts. “I’m considered the great Satan,” he says with a gentle smile, “which always amuses me.”
“This is not a malpractice suit,” he notes. “If the charges were serious, it would be malpractice.” He goes so far as to label the charges “trivial.”
In his office suite are five rooms filled with patient files: 10,000 children, all the way back to the beginning. “Seventy-five percent of them are cured,” he claims. For his legal defense fund, almost a million dollars has been raised by his patients’ parents and, in some cases, by his patients themselves. “This little boy,” he says, pointing to a photo of a cherub-faced youngster, “had a lemonade stand this summer, and he raised $33. Another little boy, 6 years old, came in with 21 cents in a paper cup.”
Hundreds of parents have crowded the Hartford hearing room in support of this aging doctor, a widower of 12 years, who in any other life would be retired. “A lot of people who dealt in Lyme are no longer doing it,” he says. “It’s a high-risk trade. But I’m less encumbered.”
Opponents debate Jones’s figures, maintaining that many of these children don’t have Lyme disease. If they succeed in wresting his license from him, the Lyme community will have lost perhaps the only physician left who’s willing to treat these children long-term — some of whom, he says, would end up in institutions without proper treatment for Lyme disease.
Clearly, the new diagnostic and treatment guidelines and the reduction in the number of physicians willing to see chronic Lyme patients will have a huge impact on the disease’s future — and the lives of the people suffering its ravages.
I realized in talking with these people that my own Lyme disease is ongoing. At the time I was diagnosed, not only was I so unfamiliar with the disease that I didn’t recognize the symptoms, but I was also confused by the massive amount of contradictory information available. And I was scared of what it all might end up costing. I’d already spent $731 out of pocket on tests and treatments. So I’ve ignored many of the painful problems I’ve experienced since my visit to that island paradise five years ago. Today my health hangs in the balance of a government and a medical system apparently unwilling not only to care for their constituents and patients but perhaps to take responsibility for an epidemic as well — a scourge that I am convinced can be traced to a scruffy little island at the eastern end of Long Island Sound.
Ferries loaded with cars and passengers pass it up to 30 times a day. Fishing boats pull catch just off its shores, and the big, bright lens at the top of the old lighthouse sweeps the water, night after night, year after year, warning passing ships away from its rocky edges.