Study Identifies Key Features that Help Patients Recover from Chronic Lyme Disease

A new study of over 2,000 patients with chronic Lyme disease found that the extended use of antibiotics was an important element of improved health.

The study analyzed data from the MyLymeData patient registry, a project of LymeDisease.org that has enrolled over 13,000 patients. Researchers from the University of California Los Angeles (UCLA) used machine learning techniques to identify key features associated with improved patient response.

“As many as 3 million people have chronic Lyme disease in the US, and nobody knows the best way to treat them,” said Lorraine Johnson, CEO of LymeDisease.org. “The key finding here is that patients who are now well or who report substantial improvement have taken longer courses of antibiotics.”

Currently, the use of extended antibiotics for patients with persistent symptoms of Lyme disease is controversial, because there is no test that can determine whether the Lyme bacteria has been eradicated.

Some chronic Lyme patients respond well to treatment, while others do not. This study compared patients who became well or substantially improved to patients who did not improve. High treatment response was most closely associated with the use of antibiotics compared to alternative treatments alone or forgoing treatment altogether. More well patients (76%) and high responders (59%) were treated with antibiotics compared to nonresponders (38%).

“We’re excited about applying machine learning to real-world data from the MyLymeData registry to identify features that predict treatment response,” said Dr. Deanna Needell, Professor of Mathematics at UCLA who participated in the study.

Treatment durations exceeding those recommended by the Centers for Disease Control and Prevention and the Infectious Diseases Society of America were common among all patients in the study. Most patients who became well or substantially improved reported being treated for months and often for more than a year. Those treated for less than a month rarely reported improvement.

Higher treatment response was also associated with patient care being overseen by a clinician whose practice focused on the treatment of tick-borne diseases. Seventy-five percent of patients who became well or substantially improved report having their care overseen by a clinician who specializes in tick-borne disease. Only 11% reported having their care overseen by an infectious disease specialist.

Compared to the general population and patients with other chronic diseases, chronic Lyme patients report significantly lower health quality status, a significant symptom disease burden, a diminished ability to work, and higher rates of disability. In this study, high responders and well patients reported substantially better quality of life, a greater percentage of improvement, and reduction in symptom severity. Patients who identified as well reported their quality of life as comparable to the US general population.

“This study confirms what many clinicians who treat chronic Lyme disease already know,” said Dr. Raphael Stricker of Union Square Medical Associates in San Francisco.  "Individualized patient care provided by Lyme-literate practitioners is essential to identify those patients who require longer antibiotic treatment to get better.”

About LymeDisease.org
LymeDisease.org’s mission is to empower patients through science-based advocacy by educating them, amplifying their collective voice, and providing big data research tools like our MyLymeData patient registry. We believe that there is strength in numbers.

About MyLymeData
MyLymeData is a patient-driven research platform and registry. It uses big data research tools that allow patients to pool their data quickly and privately to determine which treatments work best. Over 13,000 patients have enrolled in the registry. Data from the registry has been used in four peer-reviewed publications since its launch. The registry has academic collaborations with the University of California at Los Angeles and the University of Washington. It also collaborates with the Lyme Disease Biobank, a project of the Bay Area Lyme Foundation.

Contact Information

Lorraine Johnson, JD|MBA

Chief Executive Officer

LymeDisease.org

lbjohnson@lymedisease.org