Prolonged Symptoms After Lyme Disease: What CDC Wants Doctors to Know

A new toolkit can help physicians navigate the management of patients with prolonged symptoms after antibiotic treatment for Lyme disease, discussants said during a CDC webinar for clinicians last week.

“Lyme disease is really so much more than a medical issue. It’s a social phenomenon that’s driven by a combination of patient desperation for answers, physician frustration, and also medical misinformation,” said Grace Marx, MD, MPH, of the division of vector-borne diseases at the CDC. “So, as the physician, bringing a solid, science-based understanding of Lyme disease to these clinical encounters is very important.”

Erica Kaufman West, MD, director of infectious diseases for the American Medical Association (AMA), noted that Lyme disease is caused by an infection with Borrelia burgdorferi transmitted by the Ixodes blacklegged tick. Early diagnosis is critical to preventing disseminated disease, and treatment involves 10 days to 4 weeks of antibiotics, depending on the case.

However, clinical studies have found that prolonged courses of antibiotics do not offer a lasting benefit over placebo, Kaufman West added during the Clinician Outreach and Communication Activity (COCA) call.

Post-treatment Lyme disease syndrome (PTLDS) is a condition in which symptoms persist 6 months after the patient has received appropriate treatment with antibiotics. Studies have shown that 5% to 10% of patients experience symptoms of PTLDS, which include fatigue, joint and muscle pain, and difficulty concentrating, Kaufman West explained.

Controversy around the condition emerged when patients who never received a formal Lyme disease diagnosis, but had symptoms of PTLDS, began asking why they weren’t also being diagnosed with Lyme disease.

This led to the development of a new term, “chronic Lyme disease,” which is ascribed to patients who describe symptoms similar to Lyme disease but have no clinical or diagnostic evidence of current or past infection.

“There are hundreds of thousands of patients suffering from medically unexplained symptoms … and those patients are understandably concerned and looking for a diagnosis,” Kaufman West said, suggesting that some of these patients may have another post-acute infection syndrome or infection-associated chronic illness, such as post-polio syndrome or long COVID, among others.

Expert Insights

Given the lack of evidence-based guidance to support comprehensive treatment for these patients, the CDC and the AMA, in partnership with Mathematica, a research and data analytics consultancy company, conducted interviews and focus groups with 25 experienced physicians, and gleaned the following core insights:

• Clinicians must validate patients’ symptoms. Many patients feel they’ve been rejected by the medical establishment.
• Visits are “time-consuming” and “exhausting,” because physicians feel a strong urge to provide a diagnosis.
• There is a high degree of overlap between PTLDS and other syndromes, such as fibromyalgia, long COVID, and chronic fatigue syndrome. Distinguishing between so many different conditions presents a challenge.

“I can’t overemphasize the importance of how critical it is to actively listen to the patient’s story, and that includes really thoroughly exploring the patient’s timeline of their symptoms, as well as their response to any prior treatments that they might have tried or been prescribed,” Marx said, noting that a comprehensive physical assessment is also key.

“Most of these patients will ultimately be diagnosed with a condition other than Lyme disease. So, it’s really important not to anchor prematurely to a particular diagnosis, [but] rather systematically consider a broad differential diagnosis that is specifically tailored to the patient’s symptoms and also their exam findings,” she added.

Patients who feel “dismissed” by mainstream clinicians may be more likely to seek out alternative providers who may recommend unproven and potentially dangerous treatments — something Kaufman West and Marx described as “medical wandering.”

Instead of turning patients away, Marx encouraged physicians to welcome patients into their practice — recognizing that every visit is a chance to offer support and encouragement — and to identify trusted sources of information for patients who are in search of help.

Toolkits and Resources

The AMA developed a continuing medical education (CME) module, which includes an overview of Lyme disease with a focus on prolonged Lyme disease. The module details how to conduct a broad differential diagnosis, how to put together a multidisciplinary team, and how to develop an individualized care plan.

A clinician toolkit, also found on the AMA’s website, includes resources for physicians and patients including the CME module, interviews, videos, and supplemental handouts for patients, such as symptom diaries and goal trackers. The tool kit also includes clinician-focused handouts dealing with motivational interviewing and managing differences of opinion.

Symptom diaries allow patients to document their experiences in real time and in their own words, and goal trackers remind physicians not to make assumptions about what’s most meaningful to patients, Kaufman West said. For one patient, getting through a workday without any naps might be meaningful, while completing an entire shopping list in one trip might be meaningful for another. Whatever the goal, it’s important that it be specific and measurable, she added.

“The goal of the toolkit is to improve the lives of these patients, no matter the cause,” Kaufman West stressed. “It’s about saying, ‘You’ve got pain. How can we get you … [fewer] pain days? How can we have better quality-of-life days?’ And not ‘How can we get to a diagnosis?'”

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