Lyme Disease Treatment | One Woman's Quest for Answers
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).
Carroll discovered that Plum Island, which sits in eastern Long Island Sound, was set up after World War II with the help of Erich Traub, a German germ warfare expert. During the war, Traub had operated a lab on an island in the Baltic Sea. Islands, it was thought, were ideal for such research, as they’re self-limiting. But we know now that that’s an illusion. As Carroll points out: “Plum Island lies in the middle of the Atlantic flyway, the bird migration highway that runs between breeding grounds and winter homes from the Caribbean to the Florida coast, up the East Coast to the icy reaches of Greenland. In addition, deer swim back and forth between the island and the mainland.”
Compiling information received through the Freedom of Information Act, Carroll details Plum Island’s shadowy netherworld: virus outbreaks, biological meltdowns, infected workers, contaminated raw waste flushed into the Sound … and experimental tick colonies, bred for research on vector-borne diseases.
As the big white ferry New London pushes forward into deep water, steel-gray clouds hide the sky. The trip to Long Island takes about an hour and a half, and midway through our journey, on the port side, Plum Island appears, crowned with a water tower and edged with large, flat-roofed buildings. Off the island’s shores, fishing boats and pleasure craft bob. At its tip, a picturesque granite-based lighthouse sits, like a photo on a postcard.
On the map, Plum Island lies like an arrow, one end pointing toward the Connecticut coast and other toward Long Island’s North Fork. At the same time that Polly Murray and many others in that area were beginning to experience bizarre symptoms, Plum Island’s germ research was up and running. Birds, stopping on Plum Island, often flew next to either Montauk (on the South Fork) or Lyme, where the rich estuaries of the terminus of the Connecticut River lured them. Initially, the highest incidences of the disease were in Lyme and surrounding towns, and at the tip of Long Island.
Lab 257 has been shut down, but other labs on the island perk along. If infected ticks did escape from this island, they’ve long since done the damage and nothing can stop them now; Borrelia burgdorferi is out and about, doing its job, making people sick.
And as it spreads, physicians and researchers continue to squabble among themselves: Some say that long-term antibiotics are the only treatment for Lyme disease, while the more conventional among them advocate only short doses of antibiotics — and believe that if a patient needs a longer protocol, the illness must not be Lyme. Insurance coverage is often denied.
One way to stop an epidemic is to redefine it. Recent guidelines issued by the Infectious Diseases Society of America (IDSA) have narrowed the disease’s diagnostic criteria so tightly that it’s hard for any chronically ill Lyme patient to fit the profile — leaving thousands of people robbed of an answer.