Lyme Disease Treatment | One Woman's Quest for Answers
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.
And one way to control an outbreak is to determine which doctors can treat it and which ones cannot. According to the Lyme Disease Association, since the early 1990s more than 30 Lyme specialist physicians in 10 states have been brought before state medical boards under charges of overdiagnosing Lyme and overtreating with antibiotics. This, of course, is a chilling development for doctors who want to treat Lyme disease patients.
Charles Ray Jones, M.D., is a 78-year-old pediatrician whose New Haven practice has embraced 10,000 children with Lyme since 1968. “I didn’t know I was treating Lyme patients at the time. There was no such thing,” Jones says. In fact, he’s not only the world’s foremost pediatric chronic Lyme disease specialist, he’s virtually the only one.
I’ve come to see him on a rainy Sunday afternoon, the only day of the week he doesn’t see patients. A humble man, Jones lives in an apartment in an unremarkable high-rise. His commute to his office is a flight of stairs.