Lyme Disease Treatment | One Woman's Quest for Answers
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.
His patients come from all over the country to his office, just down the street from Yale’s School of Medicine. In addition to seeing patients all day long, for the past year he’s been driving north on a regular basis to a Hartford hearing room, trundling a wheeled suitcase filled with papers relating to the case against him, which may rob him of his license to practice.
He greets me in the courtly manner of his generation, almost bowing. In placid tones, he explains his life with Lyme. In the 1960s, he was a staff physician at Memorial Sloan-Kettering Cancer Center in New York. During that time, he and his wife began to look to the Connecticut countryside as a better place to raise their children. In 1968, they moved to Hamden, then a sleepy hamlet beside the Quinnipiac River, and he set up his practice.
“I started seeing children in clusters with what we thought was juvenile rheumatoid arthritis,” he says. “This was very rare. But it wasn’t really JRA. It didn’t fit the whole picture. The clusters were not just in Lyme; they were all around. And there were many of them. Polly [Murray] was instrumental because she demanded they do something about this.”
Along with Allen Steere and Eugene Shapiro, M.D., who now sits on the opposite side of the hearing room, Jones worked to solve the puzzle of this peculiar, crippling ailment. “Sure, we were colleagues at first,” he notes. “We were all trying to figure it out. You could say we were mired in a lack of understanding.” For Jones, this search for knowledge transformed into his specialty. He became an LLMD, Lyme literate by evolution.
“At what point did all this become contentious?” I ask.
“I was never part of that,” he says. “I heard things, but I was busy. I just figured that was their problem.”