NIH awards will fund Post-Treatment Lyme Disease Syndrome research

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2023-08-05

Post-treatment Lyme Disease Syndrome (PTLDS), which is a collection of symptoms, such as pain, fatigue, and difficulty thinking or “brain fog,” which linger following standard treatment for Lyme disease. The Centers for Disease Control and Prevention estimates that 476,000 people in the United States are infected with Lyme disease each year. Between 10 and 20% of them experience PTLDS.

“As tickborne diseases, including Lyme disease, become more common and widespread in the United States, it is increasingly urgent that we understand all facets of the disease, including the root causes of PTLDS,” said Acting NIAID Director Hugh Auchincloss, M.D. “We anticipate that the research supported by these awards will provide vital information on how to diagnose and treat this complex set of symptoms.”

Lyme disease is caused by a bacterium, Borrelia burgdorferi (and related species) that is transmitted by the bite of an infected tick. The classic sign of early-stage Lyme disease is a distinctive bullseye-shaped rash surrounding the tick bite. If not cured in its early stage, infection can advance to late-stage disease, which can be associated with fatigue, severe headaches, dizziness, facial paralysis and heart problems, as well as joint, tendon, muscle and nerve pain.

Most cases of Lyme disease can be effectively treated with oral antibiotics. However, some patients suffer from symptoms that linger long after the initial course of antibiotics, even though the active infection appears to be gone. The cause of PTLDS is unknown, but scientists hypothesize that it may be due to a misguided immune response to Borrelia burgdorferi where the immune system attacks the patient’s own cells; an ongoing Borrelia burgdorferi infection that is difficult to detect; or some other reason.

Unfortunately, there is no standard treatment for PTLDS. Although long-term courses of antibiotics are often used, clinical studies have shown this approach to be either ineffective, or that the risks and side effects of long-term antibiotics outweigh their potential benefits. In addition, PTLDS is often difficult to diagnose because the symptoms are so varied, and because so far there is little evidence that the patients have an active Borrelia burgdorferi infection.

Broadening our understanding of PTLDS may also contribute to our knowledge of a broader set of infection-associated chronic illnesses, such as Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Without understanding the biologic processes of these conditions, it will be very difficult to develop effective clinical interventions.

Source: U.S. National Institutes of Health