Lyme Disease Treatment | One Woman's Quest for Answers
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.
She wasted away to 94 pounds and could hardly walk: “I was so scared. I would see it in people’s faces; I’d be hanging on to my husband’s arm, hanging on to the grocery cart. Me, who was always on a bike or running up a mountain. By that time, there was so much wrong with me, I felt I was dying.”
Lauren was tested for Lyme half a dozen times. The results were negative — but Lyme blood tests are widely known for both false positives and false negatives. In New York, finally, a “Lyme literate” physician, or “LLMD,” determined that she had advanced Lyme disease and put her on a doxycycline derivative. “I was on it a year and a half,” she says. “The medication made me sick to my stomach, and I had to go off it sometimes. But I’m so much better now. Now I’m off the antibiotic and seeing a Vietnamese practitioner in addition to my doctor in Portsmouth. I’m not all the way there yet, but I’m back to work part-time.”
Lauren wasn’t the only Lyme patient I met who has wandered helplessly through the narrow, darkened hallways of conventional and alternative medicine, seeking relief from their myriad symptoms. It turned out to be a rather common story, in fact — one that stretches back in time some 50 years. During my research, I came across a book called The Widening Circle, by Polly Murray. Published in 1996, it tells the story of the early history of Lyme disease.
In 1956, Polly Murray, an artist and housewife in Essex, Connecticut, began to suffer an array of inexplicable health problems. Doctors couldn’t find a cause. While she was pregnant with their second child, she and her husband, Gil, moved across the Connecticut River to Lyme, a pastoral place with views of the big river and of Long Island Sound.