The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome

Abstract

BackgroundThe increased incidence and geographic expansion of Lyme disease has made it the most common vector-borne infection in North America. Posttreatment Lyme disease syndrome (PTLDS) represents a subset of patients who remain ill following standard antibiotic therapy for Lyme disease. The spectrum of symptoms and their impact on quality of life remain largely unexplored among patients with well-documented PTLDS.ObjectiveTo characterize a case series of patients with well-documented PTLDS compared to a sample of healthy controls.MethodsSixty-one participants met the proposed case definition for PTLDS. Twenty-six healthy controls had neither a clinical history of Lyme disease nor current antibodies to Borrelia burgdorferi. Participants with PTLDS and controls were evaluated by physical exam, clinical laboratory testing, standardized questionnaires, and a 36-item current symptom list.ResultsCompared to controls, participants with PTLDS reported significantly greater fatigue, pain, sleep disturbance, and depression (Fatigue Severity Scale: 50.0 ± 10.6 vs. 19.8 ± 8.6; Short-Form McGill Pain Questionnaire: 13.7 ± 8.3 vs. 0.8 ± 1.9; Pittsburgh Sleep Quality Index: 10.1 ± 4.7 vs. 4.1 ± 2.1; Beck Depression Inventory-II: 15.1 ± 7.7 vs. 2.2 ± 3.2; p < 0.001 for each), and significantly lower quality of life (SF-36 Physical Component Score: 33.9 ± 9.7 vs. 55.1 ± 6.2; Mental Component Score: 42.9 ± 10.1 vs. 54.2 ± 5.4; p < 0.001 for each). Nineteen non-PTLDS-defining symptoms were found to be significantly more severe among participants with PTLDS than controls, including sleep difficultly and visual complaints. Initial delayed or misdiagnosis was characterized in 59.0% of participants with PTLDS, and 32.2% had abnormal vibratory sense.ConclusionAlthough physical exam and clinical laboratory tests showed few objective abnormalities, standardized symptom questionnaires revealed that patients with PTLDS are highly and clinically significantly symptomatic, with poor health-related quality of life. PTLDS patients exhibited levels of fatigue, musculoskeletal pain, sleep disturbance, and depression which were both clinically relevant and statistically significantly higher than controls. Our study shows that PTLDS can be successfully identified using a systematic approach to diagnosis and symptom measurement. As the prevalence of PTLDS continues to rise, there will be an increased need for physician education to more effectively identify and manage PTLDS as part of integrated patient care.

Lyme Disease with Erythema Migrans and Seventh Nerve Palsy in an African-American Man

“…Our patient experienced diagnostic delay and had several severe symptoms, including neurologic symptoms, by the time of initial antibiotic treatment. Ideal long-term management of PTLDS remains uncertain, and for some patients, PTLDS continues to impact quality of life for years [17].…”

Evaluation of Natural and Botanical Medicines for Activity Against Growing and Non-growing Forms of B. burgdorferi

“…In addition to the mammalian studies noted above, B. burgdorferi persistence following antibiotic treatment has been demonstrated in human studies and case reports (20)(21)(22)(23). Persistent Lyme borreliosis symptoms significantly affect quality of life (24,25), therefore some physicians treat these patients with extended courses of antibiotics. However, this approach is controversial with one medical society guideline (26) advocating against retreating patients with persistent (>6 months) symptoms and another medical society guideline (27) recommending individualized risk-benefit assessments and potential retreatment or longer duration treatment of patients with persistent symptoms.…”

Prévention et prise en charge de la maladie de Lyme : de la complexité et de la nécessité d’intégrer divers déterminants psychosociaux

“…Par la suite, les facteurs d'incertitude spécifiques à la maladie contribuent à l'invisibilité des symptômes, ce qui rend le besoin de soutien social nuancé. En effet, l'opposition entre d'une part les résultats des tests cliniques qui ne montrent pas d'anormalités objectives dans le diagnostic et d'autre part la faible qualité de vie de ces patients est paradoxale [26,27].…”

“…Ils revendiquent la reconnaissance de la forme chronique de la maladie, pour une co-construction de savoirs à la fois scientifiques et profanes [5]. En lien avec une remise en cause de l'autorité médicale, les patients, encouragés par une sensation de responsabilité individuelle vis-à-vis de leur prise en charge, développent des formes d'autodiagnostic et d'automédication, valorisées en particulier par la presse, les associations et les espaces virtuels [27].…”