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Lyme Disease Complicates Doctor-Patient Relationship

BOSTON — Controversy still exists over the long-term diagnosis and treatment of Lyme disease. A small group of doctors and some sufferers say that long-term symptoms such as headache, fatigue and pain stem from an ongoing infection from Lyme bacteria that can persist even after antibiotics. They say that Lyme disease itself can be “chronic.”

However, many doctors and researchers in mainstream medicine reject the theory that the bacteria can persist. They agree that Lyme disease can have long-term effects, but blame lingering damage rather than active bacteria.

Dr. Mark Drapkin is one of those doctors. He is the associate chief of the Division of Infectious Diseases at Newton-Wellesley Hospital and a professor at Tufts University School of Medicine. He spoke with Morning Edition host Bob Oakes about the issue.

Dr. Mark Drapkin: After treating an infection and eradicating the organism, there can be a period during which the person still feels ill, during which various manifestations can occur. They can be immune kind of manifestations, for example a joint might still suffer the pain and swelling that may have accompanied the original infective arthritis. But now that is a damaged joint and the damage has a life of its own. But that does not necessarily imply that the bug is still there and that the problem is that the organism itself has not been eradicated.

Bob Oakes: Let me get you to respond to something said by another doctor, a specialist in Lyme. He’s Dr. Daniel Cameron, an internist based in Mount Kisco, N.Y., former president of the International Lyme and Associated Diseases Society. He says there needs to be an acknowledgement that people are suffering for months or years after being diagnosed with Lyme. And he also thinks that there should be a serious look by the medical establishment at some alternative strategies, such as long-term antibiotic treatment for patients:

I’ve been successful for over 20 years in practice at taking these complex patients and getting them better. I just need the research community to take these strategies and work with them.

Why has it been so hard to get the research community to dig deeper into treatments that some patients and some doctors say are working for patients?

Well, there have been some attempts to do that. With all due respect to the physician whom you have just quoted, when a person says, “I’ve been doing this for 20 years and it works,” I don’t listen very carefully because that’s not a research statement. These antibiotics are not benign. And I can match anecdote for anecdote if people have done well with antibiotics, they come to me when they have not done well with the antibiotics.

But you and I both know there are people on the other end of the radio who are suffering from Lyme who are going to say, “Well you know, I have a doctor who gives me antibiotic treatments and I feel that I’m doing much better with them.”

I sympathize with that person. I can’t argue with a person who feels better and I’m glad that the person’s feeling better. But does that mean that that person would feel any better or any worse if that individual received a placebo? I don’t know unless there is a trial that tells me that. I’m a physician. I’ve been in practice for 40 years now. Do I ever use drugs in ways that are not completely justified by medical science? Of course. We have to do things for patients sometimes that are not bolstered by excellent science. We know that. But with respect to Lyme disease, I would just ask that the same standards of testing, of investigation be applied to Lyme disease as are applied to any other infectious or other disease.

In a way we’re talking about, or maybe around, the story of Barbara MacLeod, a former reporter for New England Cable News who says she’s been battling Lyme disease for more than 20 years. She gives this assessment:

This is one of those diseases where you don’t get it until you get it. And the small group of doctors who will treat aggressively, and who believe the patients, they usually have some personal experience with Lyme. Where they can’t believe that their mother, sister, daughter, son or themselves are suffering the way they are, and can’t get answers and can’t get treatment.

So 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?

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 judgements about a particular individual’s diagnosis or treatment.

So what would you say to a person who’s 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 in the differential diagnosis. There are many, many instances where people have come to me thinking that they had one entity, and it turns out they have something else entirely.

Is it [in] some ways more difficult to treat patients because they come in with this preconceived notion that they think they have Lyme disease, because there’s so much information available about what many people call “chronic” Lyme disease, or others call “post-Lyme” disease syndrome?

Once you latch on to a diagnosis, it can be very hard to disabuse you of that notion. And if a patient has a list of symptoms and then sort of looks around and says, “OK, what matches my list?” And then starts looking for other lists and you come across a Lyme website, for example, that lists all of those symptoms, you say, “Oh my God. That’s me. That’s me. And that’s just what I’ve been experiencing.” And latches onto that diagnosis. It does cause difficulty. It does cause difficulty, because I am trying to look at this patient from a broader perspective and to try to keep my mind open. How much more difficult it is for a patient to keep his or her mind open when that person has recognized what seems to be a list of symptoms that matches his or hers exactly.

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