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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.
"Chronic 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:
"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?'"
Shannon Firth has been reporting on health policy as MedPage Today's Washington correspondent since 2014. She is also a member of the site's Enterprise & Investigative Reporting team. Follow
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Opinion: The First Lyme Disease Vaccine Failed. It's Time To Try Again.
Nearly half a million Americans received an unpleasant surprise this summer, according to insurance billing data: a new diagnosis of Lyme disease. Those numbers could shrink if scientists succeed in developing a vaccine for the tick-borne illness.
Low consumer demand scuppered a previous vaccine in the 1990s, but the situation is very different now. Cases of Lyme have exploded. Doctors and the public are also now more aware that infectious diseases can leave some patients with debilitating chronic conditions.
ABOUT THE AUTHORF.D. Flam is a Bloomberg Opinion columnist covering science. She is host of the "Follow the Science" podcast.
Long-lasting Lyme was once controversial, with some doctors insisting that all patients could be cured by antibiotics, but the prevalence of long COVID has been a wake-up call to skeptics that lingering symptoms are real. About 10%-20% of confirmed Lyme cases do not resolve with antibiotics. That should heighten interest in a new vaccine, like the one being developed by Pfizer and French company Valneva.
But even if this new vaccine succeeds, it won't be the final answer to the Lyme problem. Some labs are examining other prevention strategies, including vaccines that kill ticks before they can transmit disease, thus preventing several other, even more dangerous tick-borne illnesses. And new lines of prevention shouldn't slow efforts to crack the mystery of persistent Lyme, which can lead to joint pain, fatigue, memory problems and other symptoms.
Linden Hu, a professor of immunology specializing in Lyme disease at Tufts University, explains why creating a good Lyme vaccine is so hard. The responsible bacteria – Borrelia burgdorferi – is a shape-shifter. When it lives in the tick, it's coated with a protein called OspA (outer surface protein A), but when it enters humans, OspA shuts off and the bacteria expresses other proteins, including those that can mutate to escape your immune system.
That's why people don't develop natural immunity to Lyme disease. We can get infected again and again.
Both the old and the new vaccines get around this problem by prompting the immune system to make a continuous supply of antibodies to OspA. If the tick consumes blood containing those antibodies, they'll kill Borrelia burgdorferi before the bacteria has time to go from the tick to the person.
But for that to work, you need a lot of antibodies. The 1990s-era vaccine was a pretty big commitment: a series of three shots over a period of six months, followed by yearly boosters. Given that the new vaccine is almost identical to its predecessor, it will probably require a similar multishot regimen. It works in exactly the same way but has a slight molecular-level tweak – it's missing a piece that had been suspected of causing arthritis in a few people, although data showed people getting the vaccine had no more arthritis than control subjects.
A different effort is being led by Mark Klempner, a professor of medicine at the University of Massachusetts Chan Medical School. One of the developers of the 1990s vaccine, he's now focusing on an antibody treatment that protects people almost immediately and lasts for up to six months. Since it's not stimulating the immune system, it's not going to cause the kinds of side effects associated with vaccines, and patients could get the treatment when they needed it – right before a camping trip, or for people who live in Lyme territory, in the spring before peak tick season.
Even better would be a drug or vaccine that kills ticks before they have time to transmit Lyme or other pathogens. (Ticks also transmit a host of other dangerous diseases: babesiosis, ehrlichiosis, Rocky Mountain Spotted Fever and alpha-gal syndrome.) Hu, of Tufts, is pursuing this approach with Tarsus Pharmaceuticals by repurposing anti-tick medications used for dogs to prevent diseases in people. Others are looking at vaccines that trigger immunity to proteins in the tick saliva, with the same goal of killing ticks before they can transmit disease.
Some think we ought to consider even more aggressive tactics. Hu said it's theoretically possible to eradicate Borrelia by treating wild mice with antibiotics. (Mice are the ultimate reservoir for the bacteria – ticks pick it up by feeding on them.) Using bait laced with the antibiotic doxycycline, research has shown it is possible to kill 90% of Borrelia in mice and ticks, Hu said. The risk is breeding antibiotic-resistant bacteria, which is why researchers are looking at very specific antibiotics that only target Borrelia.
Dozens of other unanswered questions could hold the key to a better solution. Scientists still don't know what causes the chronic symptoms – possibly it's an autoimmune condition triggered by some unlucky combination of the person's genes and those of a particular bacterial strain.
And we don't fully understand why cases have risen so much. Our warming climate does play a role, but it's not the whole story. Constantin Takacs, a biologist at Northeastern University, is looking for answers in way the bacteria behave in different animals – including in ticks, which have been around since the time of the dinosaurs, and in the wild mice that have come to some sort of immune truce with it, the way some bats have with coronaviruses.
He also points out we don't understand why some places and not others are plagued by this disease. It could have something to do with how housing developments, farms and forests are distributed.
The new vaccine will be a good first step, but it's not the end of the story.
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