Pop icon Justin Timberlake’s recent disclosure that he has Lyme disease is drawing new attention to a common but often misunderstood illness — and may open the door to conversations between physicians and their patients.
In a candid Instagram post, Timberlake described his experience with the illness as “relentlessly debilitating,” with symptoms including “crazy fatigue,” nerve pain, and mental fog throughout his recent tour.
“When celebrities share information about their health struggles, this can be enormously helpful as it increases public awareness, reduces the stigma of chronic illness, and should lead to increased vigilance and prevention measures to decrease the likelihood of tick bites,” Brian A. Fallon, MD, MPH, director of the Lyme and Tick-Borne Diseases Research Center at Columbia University in New York City, told MedPage Today via email.
Another expert, Michael Huang, MD, chief of infectious disease at Peconic Bay Medical Center in Riverhead, New York, called it a “significant public health concern.” The most common vector-borne disease in the U.S., it is caused by the bacterium Borrelia burgdorferi, or less commonly Borrelia mayonii, and typically is spread to humans through the bite of an infected blacklegged tick.
The symptoms that Timberlake described in his post appear consistent with post-treatment Lyme disease syndrome (PTLDS), with symptoms persisting 6 months after the patient has completed antibiotic treatment, Huang said. About 5% to 10% of patients experience PTLDS, which can include fatigue, joint and muscle pain, and difficulty concentrating.
“Individuals experiencing persistent symptoms after Lyme disease treatment may benefit from consulting a rheumatologist or other specialist experienced in managing post-infectious syndrome,” Huang said.
In the U.S., Lyme disease is most commonly found in the Northeast and upper Midwest — in a belt stretching from New England to Wisconsin — with peak transmission from late spring to early fall. While the CDC reported more than 89,000 cases through public surveillance in 2023, estimates and other methods suggest the true total may exceed 476,000.
Symptoms of untreated Lyme disease vary depending on how long it has been since infection.
One hallmark is a rash known as erythema migrans, which appears in up to 80% of patients, typically around 7 days after the bite but sometimes up to 30 days later. The rash may grow to a size of 12 inches over a period of days and may — but does not always — develop the trademark bull’s-eye look.
Other early symptoms that may appear 3 to 30 days after a bite include fever, chills, headache, fatigue, swollen lymph nodes, and muscle and joint aches. Later-stage symptoms can include severe headaches, neck stiffness, rashes on other parts of the body, facial palsy, nerve pain, arthritis with severe joint pain and swelling — specifically in the knees and other large joints — and pain in tendons, muscles, joints, and bones.
Those vague, nonspecific symptoms can make Lyme disease tough to diagnose. Test sensitivity may be limited early on, and not every patient develops that telltale rash.
“Without prompt treatment, the infection can disseminate to various organ systems, including the heart, joints, tendons, and nervous system, leading to potentially serious complications,” Huang said.
The CDC recommends FDA-approved, two-step antibody tests, which typically have proper sensitivity after 4 to 6 weeks. Antibodies detected by those tests may remain in the blood years after the infection clears, meaning a test can not determine whether a patient is cured.
Treatments depend on factors including the stage of the disease and the age of the patient.
In areas where the disease is prevalent, Huang said clinicians may treat patients bitten by ticks prophylactically if there is a strong suspicion they have the disease in an attempt to minimize the risk of long-term complications.
The CDC recommends a 10- to 14-day course of doxycycline for most adults and children, with alternatives including 14-day courses of amoxicillin or cefuroxime. Doses depend on age, medical history, underlying health conditions, pregnancy status, or allergies. Those with more severe symptoms — ranging from arthritis to meningitis — may require longer courses, parenteral antibiotics, or both.
For clinicians managing PTLDS, the CDC released a toolkit in 2024 and the American Medical Association launched a continuing medical education module to aid in diagnosis and long-term care planning. Those resources include symptom diaries and goal trackers, along with handouts about motivational interviewing and managing differences of opinion.
“Current scientific understanding indicates that PTLDS is not caused by continued bacterial presence but rather represents a complex constellation of symptoms with an as-yet unknown etiology,” Huang said.
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