613 - Lessons learned from a Rhode Island academic out-patient Lyme and tick-borne disease clinic

Background: Although the prevalence of tick-borne diseases (TBD) continues to increase, there remains significant confusion regarding treatment for Lyme and other TBDs. We conducted a chart review of all new patients that came to an academic center for Lyme and TBDs. We then initiated a quality improvement project for feedback from a small subset of patients with Post-treatment Lyme disease syndrome (PTLDS).

Methods: Charts of patients visiting the clinic between March and November 2018 were reviewed. Data abstracted from the electronic health record included demographics, laboratory and clinical data. A small subset of patients who reported a history of Lyme and at least 6 months of symptoms after antibiotic treatment were enrolled in a phone survey to evaluate their experience with treatment for PTLDS.

Results: Symptoms most commonly seen in 218 new patients included fatigue (66.5%), joint pain (58.2%), cognitive difficulty (32.1%), headache (27.9%) and sleep disturbance (27.5%). 87% had already received tick-borne disease directed antibiotic treatment. Over half (60.5%) of patients report having symptoms for more than 6 months. More than half of patients (54.8%) who had more than 6 months of Lyme-related symptoms had positive serological testing. Common themes identified in the 16 phone surveys of patients with PTLDS conducted so far included significant frustration related to the dismissive attitudes from medical professionals (n=9/16), and many sought alternative or complementary therapies (n=11/16). Six patients reported receiving very long-term antibiotic regimens from other Lyme specialists. Many patients expressed satisfaction with the visit and medical advice even in the absence of curative therapy (n=9/16), although a significant number continued to seek care elsewhere (n=6/16).

Conclusion: More than half of new patients reported symptoms lasting more than 6 months after targeted antibiotic therapy. Further research is needed to develop interventions for the common symptoms of fatigue, joint pain, cognitive difficulty and sleep disturbance. Treatments to improve sleep, diet, and physical activity and decrease inflammation among patients who suffer from PTLDS are needed.