Recognition of chronic Lyme disease and the role of long-term antibiotic treatment for persistent symptoms continue to be controversial among researchers, providers, patients, and advocates. Improvements in the management of patients with Lyme disease will require an open-minded approach that includes multiple fields of medicine, according to experts who participated in a Peer Exchange®
Although the panelists agreed that awareness of Lyme disease has improved somewhat, they stated that the politicalization of the condition has prevented the development of well-funded clinical trials that are unbiased and clinically relevant and created an environment of fear among patients that their symptoms—often severe in nature—will be ignored by providers.
“Their greatest fear is not of having a diagnosis of chronic Lyme disease, but of not being able to have chronic Lyme as a diagnosis, because that prevents the physicians from treating them for the disease they really have,” said Patricia V. Smith
Trials and Tribulations of a Diagnosis for Lyme Disease
A diagnosis of Lyme disease is notoriously challenging and often involves visits to multiple providers, according to the panelists. “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,” said Peter L. Salgo, MD
. “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
, stated that the awareness has improved in recent years and patients may see an average of 5 doctors—whereas he had a case 20 years ago in which he was the 58th doctor to treat the patient. However, Smith pointed out that the awareness among providers depends largely on the region. “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 [erythema migrans] rash—and yet that doctor will not consider Lyme disease, even as a part of the differential diagnosis.”
Leonard Sigal, MD
, agreed that some physicians refuse to consider Lyme disease even when patients have researched and self-identified their symptoms. “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 are lots of clinicians who won’t listen. It’s very frustrating.”
Smith added that the contentious history of Lyme disease in the medical community and the large number of Lyme disease cases led to an ongoing battle between patients and providers. “Our patients have to fight every minute of every day of their lives while they’re in tremendous pain,” she said.
She also mentioned that the neurologic, musculoskeletal, and arthritic pain—often severe in nature—is typically missing from symptom lists. “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?’”