Lyme Disease Treatment | One Woman's Quest for Answers
One woman’s quest to find Lyme disease treatment takes her through Lyme tick country and deep into the place where medicine and politics collide.
In July 2002, having spent an idyllic week’s vacation on one of the Elizabeth Islands off Cape Cod, I came home to New Hampshire. The island — a glorious, wild place marked by ancient beech forests, kettle ponds, and open grasslands — is also crawling with ticks, which at the time seemed only a minor obstacle to enjoying the abundant gifts it offers.
Within a month of my return, however, I would begin to learn a bitter lesson — in the history, ethics, and politics of a debilitating disease, and the mystery that has surrounded it for more than 50 years.
Like many others who visit New England’s islands, I was bitten by ticks, more than once. Ten days after getting home, on a very hot day, I felt cold. I put on sweaters and heavy socks and lay down under a pile of blankets. I shivered and shook. My head pounded. More than anything, I craved sleep. I lay in bed, shivering and sweating. I finally found the strength to call my doctor, who waved away my suggestion that I might have Lyme disease.
Some days later, bruises appeared on my legs, first one and then another, and within another day, my entire body was covered in them. A friend, a nurse, saw the deep blue marks and said, “You have Lyme disease! Get to a doctor right away!” How she knew I have no idea — because they didn’t look like the pictures of the bull’s-eye rash I’d seen in books.
My doctor ordered blood tests. Indeed, I had Lyme. Soon my doctor was talking with specialists at the Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia. I was a rare case. I had all four of the identifying factors: a verified tick bite, flulike symptoms, a positive blood test, and a bruiselike rash, known medically as erythema migrans, or EM. My doctor prescribed four weeks of a powerful antibiotic, doxycycline, and when the symptoms hadn’t completely subsided in that time, an additional two weeks.
The antibiotics cleared the rash immediately. The fever was subdued, but not my fear. I Googled “Lyme disease” on my computer. More than a million results came up, and to my dismay, many of them were in remarkable disagreement about almost everything. There were scores of “Lyme disease associations” to consult. Which ones were useful? I had no way to tell. I read dozens of personal stories — all with the same theme. The Lyme disease treatment was as perplexing as its cause.
I read about Allen C. Steere, M.D., the physician who first gave the disease its name — and who later received death threats and refused to make public appearances without security guards. I read about doctors who had been hauled before their state medical boards for prescribing long-term antibiotics, risking suspension of their licenses. I was mystified. This was beginning to sound like a John le Carre novel. My journey down the information highway had left me with more questions than ever.
Some of the Web sites I visited, such as lyme-rage.info, appeared to be outlets for fury against the medical establishment and the insurance companies. I could relate to that. My health insurance had expired just two weeks before I was diagnosed. A cancer survivor, I was in the midst of applying to insurance companies when I received the Lyme diagnosis. And so, on the next application, I dutifully reported my past history — not only with cancer but now with Lyme. That application was denied. The reason stated? Lyme disease. I thought, “How could Lyme” — which I thought of then as merely an achy, flulike illness — “be worse than cancer?”
Whenever people heard that I had Lyme, they had stories to tell. That’s how I learned about Lauren Lemay.
At her Gilford, New Hampshire, home, she sits on her deck looking out across the gentle view of the distant hills. For six years she has struggled with this sickness. “The day before I got sick, I ran 10 miles, played nine holes of golf, and then I painted the living room. That was my typical day,” Lauren recalls.
Lauren, now 58, was an elementary school teacher, a long-distance runner, and a vegetarian for nearly 40 years. Health was her constant companion. “The next day, I was getting ready to go teach, and I just couldn’t move,” she says. “I was so tired, like nothing I ever remember in my life; I just wanted to sleep. I dragged myself to work, got through the day, and came home and slept and slept. And I was freezing. It was a hot day, and I crawled into a sleeping bag and curled up in a chair, shivering.”
That was only the start. With increasing desperation, Lauren consulted 15 or 20 doctors and was diagnosed with chronic fatigue syndrome, Crohn’s disease, anorexia, depression, and empty nest syndrome. When she ran out of physicians in her local area, she consulted doctors at Boston’s Lahey Clinic and Beth Israel Deaconess Medical Center. When she found no relief there, she continued to seek a diagnosis. She visited a Chinese doctor, a psychic, a Venezuelan shaman, and a woman who conducted business out of a yurt in the middle of the woods in Western Massachusetts. “I was ready to try anything,” she says.
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