“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.
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 from patients and doctors who believe that Lyme is a chronic condition — that the bacteria is still operating in a patient’s system long after the initial antibiotic treatment.
Wormser of New York Medical College explained the strong feelings from patient advocates and so-called “Lyme-literate” doctors this way:
“Fundamentally, we have a lot of patients in the general population who have non-specific and quality-of-life-impairing symptoms. It’s just a fact of life, and these patients are frustrated and I don’t blame them because the mainstream medical community often doesn’t have the answers they want. They can’t be given a specific diagnosis or a specific therapy and they’re suffering and don’t know where to turn. So you can imagine the appeal when they go to a doctor that says, finally, ‘I know what you have. The other 25 doctors that you’ve seen have missed the diagnosis completely. You actually have chronic Lyme and I sort of know what to do.’
“And here’s what they tell them: ‘I’m going to give you these antibiotics long term and if you feel better, great. If you feel worse, that’s also indicative that the antibiotics are working. … And if you have good days and bad days, well, chronic Lyme is hard to treat.’ So really any outcome that the patients experience therefore is consistent with the presumed diagnosis of chronic Lyme. So you can imagine the situation that patients are put in.
“Patients have illnesses, sometimes they have waxing and waning periods on their own. Sometimes the sense that somebody’s actually looking after them and seeing them on a regular basis is very comforting and actually helpful and may be therapeutic. But the data that antibiotics actually would have a logical role in post-Lyme symptoms aren’t there. And the data on the actual effects beneficially of treatment are ambiguous at best or negative in the studies that have been done.”
And that rancorous debate isn’t helping patients, Wormser said.
“It would be nice if there could be some common ground and agreement as to how to go forward and try to prove or disprove what people seem to be thinking,” he said. “But from the mainstream perspective, the data are very strong that there’s no role for long-term antibiotics and there’s no evidence of chronic persistence of borrelia burgdorferi in humans in North America. And we’ve looked quite hard to find evidence of this.”
And the other side of the aisle, so to speak, agrees on the need for common ground.
Dr. Daniel Cameron is the former president of the International Lyme and Associated Diseases Society, which holds that Lyme is a chronic condition. This is a position represented by a small group of doctors.
“I think a second look at the literature will say, ‘Listen, these people are sick, there’s plenty of evidence.’ We have to move beyond the soundbites on both the ILADS and IDSA [mainstream Infectious Diseases Society of America],” he said.
“I feel that doctors are torn between those two organizations, the IDSA and ILADS,” Cameron continued. “They’re also torn when their local infectious disease doctor might complain or the medical board is questioning their treatment, so doctors don’t look at the evidence like they should, they look to the right or the left.”
Cameron wants more studies about people suffering these kinds of symptoms and more open dialogue among doctors about Lyme disease.
And there may be some room for agreement. Some of the doctors on the IDSA side told me that it might be good to have a diagnostic test that seeks out the bacteria itself, rather than the body’s response to the bacteria. Wormser said there could be a benefit in a test that clearly shows an active infection.
And, he said, it is also important to figure out what is causing about 20 percent of the general population to suffer symptoms like chronic fatigue and pain, which can be misdiagnosed as Lyme disease by doctors who either don’t test or don’t use standardized testing.
“If we had the answer for those kinds of symptoms, even symptomatic treatment that would eradicate them with a high degree of reliability, we would do so much good for so many people,” Wormser said.