Lyme Disease Treatment | One Woman's Quest for Answers
“We moved here to be in the country,” she explains. “We built a treehouse for our sons at the edge of the field, and that of course is where the ticks are. And then we found out about Lyme. We had no idea.” Georgina is a neurologist; her husband is an immunologist. “The problem is, we’ve got too many deer,” she adds. “Why would anyone tolerate a problem that’s destroying the woodlands, causing fatal car accidents, and spreading disease?”Last summer, Georgina and her husband took a trip to Maine and stayed on Monhegan Island, where there are few ticks. “It was wonderful to be somewhere where they weren’t,” she notes. But it wasn’t always so.
On Monhegan Island, a little rock of a place 10 miles out in the ocean off the coast of Maine, Peter Rand, M.D., and his band of fellow sleuths at the Maine Medical Center Research Institute have spent almost 20 years studying the relationships among deer, rats, and ticks, and how their population levels correlate with the spread of Lyme disease. “Oh, I’d love to write a book about all this,” says Rand, a handsome man in his 70s, with a full head of white hair and a patrician bearing. From his office in South Portland, he loves to tell the story, an adventurous tale of trips to the island on the high seas, collecting ticks in the snow, and late-night sessions around a roaring fire, the team talking about the future of their research. “The beauty of the island was that it was contained,” Rand explains. A scientist’s dream.
For part of that time, most of the 75 full-time residents of Monhegan acted as guinea pigs; the island’s little general store became their makeshift clinic. “The people would come down and put their arms on the meat counter, and we’d draw blood,” Rand recalls. Dogs and cats were tested, too. He sometimes felt as though he were on the set of M*A*S*H.
His team worked like that for 13 years: “We found that as the years went on, up to 13 percent of the island’s residents had Lyme.” The local fear was that the presence of the disease would scare away visitors, who provide Monhegan with vital revenue. And so, after furious debate, residents agreed to have all the deer killed. Between 1996 and 1999, more than 100 deer were shot and their carcasses processed (the meat was donated to food banks), effectively removing the most active tick host from that island. And now, six years later, Lyme is rare on Monhegan. Rand’s study was a triumph in the annals of Lyme disease prevention.
One comment I heard more than once is that Lyme doesn’t kill you — but you wish it would. In Brunswick, Maine, I visited Rita Losee, a little fireball of a redhead who was once a nurse and a triathlete. Bitten by a tick while hiking the Appalachian Trail, she was diagnosed quickly, but when she’d finished the recommended course of antibiotics, her symptoms returned. “There were three or four times when the pain was so awful, I was within days of killing myself,” she remembers. Her doctor changed her diagnosis to chronic fatigue syndrome. At first she believed him — but then she started researching on her own. “I convinced my doctor to put me back on antibiotics,” she says, “and I started to feel better again.”
The mysteries of Lyme haunt her: “One of the things that really puzzles me is that so many doctors refuse to know about Lyme. I was in touch with one doctor, and he and his family all had Lyme. I called him up and he said, ‘I don’t want to talk about this on the phone,’ and he invited me over. I felt as if I were in a Kafka novel. I’ve never felt anything like this, the strange energy that surrounds Lyme. I asked him about it, and he talked about the denial that exists around Lyme. And then he told me that there was a writer for Newsday who started investigating, and he traced the whole thing to a little island off Long Island where the United States has a biological factory, and that this Lyme bug was an escapee.”
I knew what Rita meant by the “strange energy” surrounding Lyme. When I visited Georgina Scholl and asked her to explain the controversy, she covered my tape recorder with her hand and whispered, “Please!” And then she said, as if in mediation, “Why do we have to have this disagreement? Let’s just get rid of Lyme!” Kirby Stafford and Peter Rand both told me they wouldn’t answer questions about the “biopolitical” aspect of Lyme. What did they mean by that? I wondered. What was there about this disease that could not be discussed?
And then I met Marjorie Tietjen, a sweet-natured woman who lives with her husband and son in a house in the woods of Killingworth, Connecticut. Marjorie, who has suffered from Lyme since 1989, calls herself a Lyme activist. I’d read her articles on the Web and was impressed by her wealth of information. She welcomed me to her home. Like almost every other Lyme patient I’d visited, she had stacks of papers and folders piled on the dining room table.
Marjorie had her own story to tell me, but she also had a book she wanted to give me: Lab 257: The Disturbing Story of the Government’s Secret Plum Island Germ Laboratory by Michael Christopher Carroll (HarperCollins, 2004).