What patients tell us: Assessing feedback and perspectives of patients with post-treatment Lyme disease symptoms.

Abstract

While most patients with Lyme disease fully recover within 6 months, a minority of patients develop significant and persistent symptoms after appropriate antibiotic treatment. With no clear pathophysiology or treatment, post-treatment Lyme disease (PTLDS) (also sometimes referred to as chronic Lyme) is a highly contested condition within the medical community. After conducting a phone survey of 25 patients who had visited an outpatient, academic center for Lyme and other tick-borne diseases, we collected and summarized patients’ perspectives and feedback of the care they received for ongoing Lyme-related symptoms. Findings from this phone survey demonstrated an extremely varied history with regards to experiences with diagnosis, treatment, and management of long-term symptoms. Key themes include a wide-ranging but life-altering self-reported symptomatology, pervasive doubts/frustrations in the medical system regarding treatment of PTLDS symptoms, and how often patients tried unconventional and nontraditional treatment methods. Importantly, patients were unified in their appreciation for an approachable and validating healthcare team even if they did not find complete resolution in their symptoms.