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

PMID: 33789412

Free article


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.



Once again the false percentage of 10-20% is being continually regurgitated and only serves to downplay the seriousness of this issue, and research monies are doled out to issues affecting the most people.  A microbiologist has exposed the false, misleading percentages here.  The 10-20% that are recognized are patients diagnosed and treated early.  There is a much larger group (30-40%) that remains unrecognized due to being diagnosed and treated late.  Combine the two groups and you have a whopping 60% OR MORE who go on to suffer debilitating symptoms.  I can’t overstate the importance of this common flaw.

This needs to be acknowledged, widely recognized, and addressed.

%d bloggers like this: