WBUR

The Debate Over ‘Chronic’ Lyme Disease

As part of WBUR’s special series on Lyme disease, former New England Cable News reporter Barbara MacLeod talked about her struggle for eight years to get properly diagnosed with Lyme.

MacLeod’s story received a lot of feedback Tuesday. One person posted a comment that says, “Thank you for running this series. I’ve been diagnosed with…Lyme disease, had IV antibiotics, and still have symptoms. My case seems to mystify doctors, but I can’t understand why when there are so many stories like this out there. I have spent years feeling crazy!” Another commenter, however, writes this: “It is irresponsible for WBUR to air such a lopsided segment in isolation.”

That criticism has to do with the debate over so-called “chronic Lyme,” which MacLeod and some other Lyme disease sufferers wonder if they have. There’s a deep division in the medical community over whether there is such a thing as “chronic Lyme disease,” and there’s ongoing debate over how to help people who suffer from long-term effects of Lyme.

Dr. Mark Drapkin is the associate chief of the Division of Infectious Diseases at Newton-Wellesley Hospital and a professor at the Tufts University School of Medicine. He spoke with WBUR’s Bob Oakes about MacLeod’s story and the debate over so-called “chronic Lyme.” The full interview will air this Friday, but because there was so much listener interest in this issue, WBUR decided to air an excerpt of their conversation Tuesday afternoon. (Update: The full interview with Drapkin is here.)

Bob Oakes: What do you say to someone like Barbara MacLeod who has had great difficulty with Lyme disease for a couple of decades and has had trouble getting treatment for it?

Dr. Mark Drapkin: Well, I hesitate to comment on a particular person’s illness.

Because you haven’t examined that person?

I haven’t examined the person. I haven’t gone over the medical record. I think it would be wrong for me to make any snap judgments about a particular individual’s diagnosis or treatment.

So what would you say to person feeling the symptoms — fatigue, headache, pain — and can’t find any answer?

I will be open-minded and I will not comment on an individual’s diagnosis until I have the data, the face-to-face talk time, the physical examination, the review of all prior laboratory testing. Those same symptoms could be early HIV infection. I would wonder, ‘Has the person been HIV tested?’ Those same symptoms could be those of lupus; I would wonder if that disease had been considered.

We heard Barbara MacLeod say in her report that she had been advised against trying to get pregnant. Is that a usual admonition for somebody who’s suffering from Lyme disease?

Absolutely not. And if there was one part of the report — which I did hear as it aired — that really upset me, it was that advice that she had received. There are no data that either I or the American Academy of Pediatrics — whose job it is to protect children — are aware of that suggest that Lyme disease has been associated with any fetal abnormalities. So it kind of broke my heart when I heard that she had received that admonition.

Tune in Friday morning to hear the rest of the interview with Dr. Mark Drapkin. (Update: The full interview with Drapkin is here.)

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