Issues → July/August 2007 → Feature Stories →
Lyme Disease: One Woman's Journey
(page 8 of 8)
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.
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.
Reader Comments
Comment from Donna Zuk on June 6, 2008
I have Yankee magazine emailed to me every month, but in June last year I moved back to Connecticut after spending 2 years in North Carolina near my grandchildren and missed this article until now. I have been having weird ripping pains in my hands that heal in about 4 days only to return. I could hardly hold a pen today with sharp pains shooting in my hand whenever I tried to do normal activities. After a year of this, and it not getting better today after my usual 4 days or so of healing, I decided to go to the walk-in. I have lab work that I have to get done, and I noticed a Lymes disease test.
Funny thing I thought. Many years ago (16) a doctor tested me for hypothyroidism, Lymes, and Epstein Barr/mono. The Lymes and thyroid tests were negative. The Epstein Barr titer test was positive. I was diagnosed with Chronic Epstein Barr.
Years later after getting a tetanus shot, weird things began happening. Pain, severe pain, muscle spasms and muscle jerks spread all over my body, then 2 months later burning, boiling pain. Tender pain I used to call "it feels like raw hamburg pain." Then if I did some sit ups, I would have serious tender pain between my muscles and rib bones. I'd say, it feels like someone hit me with a baseball bat multiple times. My exhaustion for years continued. I would wish for death. I would cry from the pain and exhaustion. I didn't want to be in a relationship so they wouldn't have to deal with my limited life.
After seeing multiple doctors, I was diagnosed with fibromyalgia. I always feel sick. I have a hard time getting up in the morning and a hard time falling asleep, or staying asleep. I always hurt.
I came home tonight with thoughts of the meaning of my painful hand symptoms and what they might have to do with Lymes disease? I began my internet search again. Again I was reminded of another search I had done, and the tell-tale sign of the bulls eye rash. It's a funny thing because I had that once... (27 years ago) more than one on the same leg, so I counted it out. It was more than one area so it can't be Lymes. The Lymes test was negative, and there was also more than one bulls eye area at the same time (and it didn't get better). Then I read on the net, you can have more than one even if there's only one bite.
Ok, so now I continue searching trying to find any type of bite that might have the look of my bulls eye. My bulls eye was not the red rash. I distinctly remembered mine were bruises. You can imagine after all these years of never mentioning it to a doctor. I am now a nurse, (and after 19 years of nursing at 50 years old going back to college because my repetitive 'injuries' and exhaustion is making life miserable if not impossible at times) I was not a nurse when I had these bulls eyes but niether was I taught about lymes disease in nursing... never mind atypical BRUISE-type bulls eyes! Thank you so much for this article, and please, please thank that nurse!
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