“There’s a tremendous amount of hearsay and misinformation about Lyme disease, particularly on the internet,” says Dr. Anne Norris, medical director of Penn Presbyterian Medical Center’s infectious diseases practice.
Norris, who lives in Media, laments the widespread reliance on non-factual medical advice. “That does a disservice to patients whose symptoms get labeled as Lyme disease, when in fact they have another disease that gets neglected.”
Diagnosing the disease still relies on symptom reporting, including the bull’s-eye rash. But that’s changed, too. “The classic bullseye pattern was how Lyme presented on Caucasian skin, but that’s not always how it manifests on skin with melanin,” explains Dr. Karthya Potti, a family medicine practitioner with Main Line HealthCare Primary Care in Westtown. “On darker skin, Lyme disease rashes can be atypical. We’re educating patients to be aware of that.”
In 2014, the Lyme and Related Tick-Borne Disease Education, Prevention and Treatment Act was signed into law in Pennsylvania. Antibiotics are still the standard plan of care—the past decade has not seen any new treatments. But the course of treatment has shortened. Now, patients are typically on antibiotics 10-14 days, as opposed to 21 days. “We can effectively treat Lyme while reducing patients’ exposure to antibiotics—and that’s a good thing,” Norris says. “It lessens the likelihood of antibiotic toxicity.”
That’s one of the headlines that came out of the 2020 Guidelines for the Prevention and Treatment of Lyme Disease. Published this past November, the clinical practice guidelines are the result of a comprehensive collaboration between the Infectious Diseases Society of America, American Academy of Neurology and American College of Rheumatology. “It’s an exhaustive effort to update the guidelines from 10 years prior with the benefit of having an enormous number of collaborators,” says Norris. “No new novel therapies were introduced, but the medical world is trying to come to consensus on what’s best for our patients.”
There’s little consensus about Post-Treatment Lyme Disease Syndrome, a constellation of symptoms that has coalesced into a diagnostic category. Thought to be a chronic version of Lyme, it’s characterized by a continuation or relapse of joint pain, fatigue and other symptoms. While recognized as a condition by the Centers for Disease Control and Prevention, PTLDS requires more study. “It’s not well-characterized and shares some features with conditions like fibromyalgia,” says Potti. “It’s very much a debatable diagnosis, because it could be its own entity or an overlapping disease.”
Local physicians have downplayed recent national reports that the prevalence rose during the pandemic. While more people are outdoors and potentially exposed to ticks, they haven’t seen a rise in diagnoses. One thing that is well-documented: Lyme is more widespread in Pennsylvania than it was a decade ago. Once concentrated in the southeastern region, it’s now prevalent throughout the state. Part of that is because Pennsylvania is more densely populated in vectors where Lyme is prevalent. Expanded populations of white-footed mice and deer are also to blame. “We have more Lyme in Pennsylvania than the next three states combined,” says Norris. “If there’s a competition for Lyme, we win.”