Trials and Tribulations of a Diagnosis for Lyme Disease

Peter L. Salgo, MD: I want to come back to the problem that we don’t have a test, for whatever reason, and we don’t have this wonderful magical machine where we can put the blood in and determine, bing, Lyme disease, boom, not Lyme disease. And so, we wind up with people with all sorts of multisystem issues. They must go through provider, provider, and provider. This pathway has got to be crazy.

Robert C. Bransfield, MD, DLFAPA: The record that I saw was 57 doctors. Now, that was a case 20 years ago, and I was actually Dr. 58. He’s doing well now. I treated the psych symptoms, which weren’t being adequately addressed and contributed toward disease progression, and he did have another doctor who was treating him with some modest amounts of antibiotics. Now, he’s fine, but he just wandered around for a while. You don’t see that now. Now, maybe someone sees a few doctors. The average might be 5 doctors, according to 1 study. I think there’s more of an awareness than there used to be years ago.

Leonard Sigal, MD: And there’s the internet.

Patricia V. Smith: Well, it depends on where you are located. If you’re located in a state that’s now considered low incidence, the problem patients have is that they go to a physician, they may have all the symptoms—sometimes they even have an EM rash—and yet that doctor will not consider Lyme disease, even as a part of the differential diagnosis. They are told, “We don’t really know what you have, and maybe you need to see a mental health professional,” which seems to be a universal excuse.

Peter L. Salgo, MD: But that’s just bad medicine.

Patricia V. Smith: Well, yes, but it’s happening time after time, and it has been happening for decades with our patients.

Leonard Sigal, MD: And what’s really frustrating is that patients will walk into a doctor’s office with papers. They’ll say, “I’ve looked at the internet, and this rash that I have looks very much like this. I think I have Lyme disease.” And there’s none so blind as he who will not see. There are lots of clinicians like that who won’t listen. It’s very frustrating.

Peter L. Salgo, MD: What comes to mind is, somebody walks into a doctor’s office in New York and says, “I have symptoms consistent with San Joaquin Valley fever,” and the doctor in New York says, “No, you don’t, this is New York.” But why not?

Samuel Shor, MD, FACP: I could be traveling.

Leonard Sigal, MD: Yes, right, exactly.

Patricia V. Smith: But this is different with Lyme disease because there are so many cases and it has such a contentious history. Our patients have to fight every minute of every day of their lives while they’re in tremendous pain. And by the way, that was missing from the symptom list, and it’s one of the things patients say to me most often: “Why don’t they have the massive pain that we are in on the symptom list?”

Peter L. Salgo, MD: What pain do they experience?

Patricia V. Smith: A lot of neurologic pain, musculoskeletal pain, and arthritic pain, and they are very high levels of pain. That is not looked at as being part of the picture, and it needs to be. When these people do come in with papers, I give them credit. They come in with studies. You know why they come in with studies? Because otherwise, oftentimes, they’re not able to get diagnosed. I talk to patients who have seen 20 physicians over the years. We had a renowned oncologist in the field for many years who had nothing to do with Lyme disease. And what happened? He developed problems and he was very physically fit, etc. No one could diagnose it. He has now written a book. He lost his heart. He had to get a heart transplant because—by the time he finally got diagnosed with Lyme disease and got treated—he got better, but his heart just didn’t make it. He is absolutely appalled because now he sees. He saw doctor after doctor, and many of these doctors were his colleagues.