Lyme Disease Treatment | One Woman's Quest for Answers
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.”
Now it’s his problem, too. Jones has been charged with diagnosing two children in Nevada with Lyme disease before examining them, and with prescribing antibiotics for them over the phone. Shapiro, his former colleague, a professor of pediatrics and epidemiology at Yale’s medical school, not only brought the charges against Jones but also helped write the guidelines that have narrowed the Lyme disease diagnostic and treatment guidelines. The Hartford Courant once quoted Shapiro as saying that he had had calls from physicians in Connecticut “begging me to see their patients so they don’t have to see Dr. Jones.”
On the day I visit, Jones sits at his desk in a big leather swivel chair. On the desk are neat stacks of patient files. For the hearing, which he calls variously a “conspiracy,” a “witch hunt,” and an “inquisition,” his accusers have subpoenaed many of his charts. “I’m considered the great Satan,” he says with a gentle smile, “which always amuses me.”
“This is not a malpractice suit,” he notes. “If the charges were serious, it would be malpractice.” He goes so far as to label the charges “trivial.”
In his office suite are five rooms filled with patient files: 10,000 children, all the way back to the beginning. “Seventy-five percent of them are cured,” he claims. For his legal defense fund, almost a million dollars has been raised by his patients’ parents and, in some cases, by his patients themselves. “This little boy,” he says, pointing to a photo of a cherub-faced youngster, “had a lemonade stand this summer, and he raised $33. Another little boy, 6 years old, came in with 21 cents in a paper cup.”