Characterizing the Symptoms of Patients with Persistent Post-Treatment Lyme Symptoms: A Survey of Patients at a Lyme Disease Clinic in Rhode Island

R I Med J (2013). 2021 Apr 1;104(3):53-57.


Background: 10-20% of individuals diagnosed with Lyme disease develop chronic symptoms after antibiotic treatment.

Methods: A convenience sample of adults with self- reported, persistent post-Lyme treatment symptoms seeking treatment at the Lifespan Lyme Disease Center in Rhode Island completed a demographic and medical survey, the Patient Reported Outcomes Measurement Information System (PROMIS)-29 v2.0, and other short-form PROMIS measures of cognitive function, sleep disturbance, and fatigue.

Results: Compared to average standardized scale scores (T=50; SD=10), participants had mild impairments in physical (T=41) and social (T=42) functioning, mild symptoms of depression (T=56), anxiety (T=60), and sleep disturbance (T=57), and moderate pain interference (T=62), and fatigue (T=65). Participants reported greater symptoms than some other clinical samples including those with cancer and chronic pain. Post-hoc analyses revealed that women reported higher levels of fatigue than men.

Conclusions: People with persistent post-Lyme treatment symptoms report debilitating symptoms and functional impairments which must be considered in clinical care.

Keywords: patient-reported outcomes; Lyme disease; chronic disease; quality of life.

MeSH terms

  • Adult
  • Chronic Pain*
  • Fatigue / epidemiology
  • Fatigue / etiology
  • Female
  • Humans
  • Lyme Disease* / diagnosis
  • Lyme Disease* / drug therapy
  • Lyme Disease* / epidemiology
  • Male
  • Quality of Life
  • Rhode Island / epidemiology