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Defining post-treatment Lyme disease syndrome: A systematic scoping review

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Abstract
Background Lyme disease is an illness caused by borrelia bacteria that is generally transmitted to humans through the bite of an infected tick. It is reported that anywhere from 5-20% of patients continue to experience symptoms after completing the standard treatment for Lyme disease which is referred to as post-treatment Lyme disease syndrome (PTLDS). Clinicians do not have a standard definition, symptomatology, or diagnostic procedure for PTLDS which is why this review examined how different studies define post-treatment Lyme disease syndrome. Methods PubMed was searched on February 16 2025 for scientific studies that discuss PTLDS. Eligible studies were conducted in the United States, stated a clear definition of PTLDS, and included symptomatology and diagnostic procedures. All studies were either randomized control trials, observational studies, or clinicians’ guidelines. Results were narratively synthesized by symptomatology, and grouped by diagnostic procedures. Results Nine studies were included, eight of which were patient facing, which resulted in 1,671 participants being represented. Of the included participants, 1,558 were classified as cases with PTLDS and 113 did not have PTLDS. Of studies that reported demographic information, the majority of participants (greater than 90%) across all studies were white individuals with an average age in the 50s. There was a relatively equal representation of gender across studies. Four terms were commonly included across the nine studies, however there was no consensus about what PTLDS actually entails for patients. The same six studies stated that fatigue, musculoskeletal pain/myalgia, and cognitive dysfunction were primary symptoms. Five studies cited subjective non-specific symptoms as the main indicator of PTLDS. One study did not have any of the aforementioned key words and defined PTLDS as patient-reported symptoms after treatment for Borrelia burgdorferi infection. Discussion The literature is not representative of all people at risk for developing PTLDS. More research is needed with a more diverse cohort of patients. There was no standard of duration or intensity for symptoms experienced by patients which limits understanding of the disease. Clinicians should work with researchers to develop a concrete definition for PTLDS to design treatment protocols.
Type
Capstone Project
Date
2025-05
Publisher
License
Attribution-ShareAlike 4.0 International
License
http://creativecommons.org/licenses/by-sa/4.0/