“Wow,” I commented to WBUR Morning Edition producer Kathleen McNerney after I overheard her frustrated acceptance of one more refusal from one more specialist she’d asked to speak on the air about Lyme disease. “I can’t think of another medical field where it’s this hard to find a doctor who’ll speak on the record.”
In the course of the reporting for WBUR’s week-long series on Lyme disease, it has been extremely difficult to find local mainstream doctors willing to speak publicly about it. Lyme disease is surely one of the more controversial issues in American medicine, but is the atmosphere around it really that daunting and toxic? Here, Kathleen shares her experience and the perspectives of specialists.
By Kathleen McNerney
It’s passionate. It’s personal.
Thousands of people in Massachusetts are diagnosed with Lyme each year.
According to Dr. Gary Wormser, an infectious disease doctor at Westchester Medical Center and professor at New York Medical College, a year or more after those patients receive the standard treatment for Lyme disease, about 10 to 15 percent complain of chronic fatigue, aches and pains, or cognitive impairment. (One study cited by the Centers for Disease Control and Prevention puts that figure at 10 to 20 percent.)
Those patients who suffer ongoing symptoms are central to a debate in the medical community.
“It’s important to realize that the central controversy surrounding Lyme disease is that individuals have quite different perspectives on what Lyme disease is and also what chronic Lyme disease is,” said Wormser.
Another doctor said it was a “lose-lose situation” to speak publicly and possibly jeopardize his research, because there is so much animosity out there.
The majority of doctors and researchers say Lyme disease is caused by a tick-borne infection called borrelia burgdorferi that is easily treated with a round of antibiotics. But a small group of doctors raise questions about the tests used to diagnose Lyme and say that the infection is persistent, wreaking havoc on people’s bodies.
The debate is intense. So intense, in fact, that very few doctors in the mainstream want to speak publicly about it.
For WBUR’s series Living with Lyme, we reached out to dozens of specialists in Massachusetts to try to get the mainstream perspective (getting the alternative perspective was fairly easy).
Several didn’t return repeated phone calls. One administrative assistant said, “If you don’t hear back, it means that he’s not interested.” Two doctors would only speak off the record. One said he didn’t want to have a formal interview because “If you say something wrong, people pounce.” For him, it was too volatile an environment to speak publicly: “My job is not to debate, but explain what I think” based on scientific evidence. Continue reading