Why Might Lyme Disease Be Overdiagnosed or Overtreated?

Leonard Sigal, MD, clinical professor and former chief of the Division of Rheumatology at Robert Wood Johnson UMDNJ Medical School, explains why Lyme disease is sometimes overdiagnosed or overtreated.

Interview Transcript (modified slightly for readability):

“Some people believe that Lyme disease is overdiagnosed and overtreated. And when I say ‘overdiagnosed,’ I mean people who do not have Lyme disease are diagnosed with Lyme disease, often for no good reason that I can identify. ‘Overtreatment’ would be an antibiotic therapy that’s in excess of necessity.

Why is it overdiagnosed? People are suffering; people are not feeling well, and if they go to a certain kind of doctor who believes that Lyme disease is every place and everything, then they’ll be diagnosed with Lyme disease—and there are plenty of those doctors around. On the other hand, if they go to somebody who’s a little more rigorous—and perhaps the other side would say stubborn and difficult—the diagnosis of Lyme disease may not be made; they might suggest that perhaps there’s something else going on.

In my experience, we’ve seen lots of patients who were diagnosed with Lyme disease who did not have Lyme disease. Maybe they had it once, but what they had now was not Lyme disease. There was a recent study published by Allen Steere in Arthritis and Rheumatism, where documentation of patients who once had Lyme disease, now had rheumatoid arthritis, some patients had psoriatic arthritis, some who had spondyloarthritis—not Lyme disease. Also, I published many years ago in the American Journal of Medicine about the patients we had seen in our Lyme disease referral practice; many, many of those people did not have Lyme disease.

So, it’s really sometimes the a priori bias of the clinician, and, as for overtreatment, if you subscribe to the academically-accepted guidelines, then you treat in a certain way, with certain antibiotics, for a certain duration, for different manifestations. If the person does not get better, you have three options. One option is retreat; there’s no proof that that’s of any value. The second option is to look for another diagnosis; maybe something else is going on. And I must tell you that we’ve seen a lot of patients who thought they had “chronic fatigue” as a manifestation of Lyme disease, who, in fact, had fibromyalgia, a musculoskeletal pain syndrome predicated on poor sleep and muscle deconditioning. It’s very common; we’ve seen a lot of it following Lyme disease. Allen Steere had the same experience up in Boston. And so, the first is to retreat. The second is to look for another diagnosis. And the third is just wait because not infrequently the symptoms of Lyme disease will dissipate over time as long as you can deal with the anxiety of the patient.

Some patients will show up and they’re convinced that they have Borrelia burgdorferi corkscrewing its way into every organ system they own, and they’re scared. Fear is a terrible magnifier of symptoms. And so, we need to be aware of the anxiety, aware of the fear that the patient has, and then address it appropriately—not dismiss it. You can’t say, ‘It’s all in your head.’ That’s an arrogant and stupid approach that doesn’t serve anybody’s purpose.”