PATIENT-LED RESEARCH FOR LYME DISEASE
Focused on People Who Matter the Most — Patients
For more than ten years, LymeDisease.org has been conducting patient-led research using patient-generated data. Lyme patients are experts in their illness. Patient-powered research takes the traditional top down expertise driven academic research model and turns it on its head. It is conceived by patients, is run by patients, and addresses issues that matter to patients.
Our patient registry, MyLymeData, is contributing to the knowledge base of Lyme disease by collecting, compiling, and analyzing the data essential to understanding and effectively treating chronic Lyme disease. We have published 8 peer-reviewed big-data studies to date and are in the process of publishing others.
MYLYMEDATA PUBLICATIONS
Persistent Borrelia Infection in Chronic Lyme Disease: A Review of the Medical Literature
Stricker, R. B., Fesler, M. C., & Johnson, L. (2026). Persistent Borrelia infection in chronic Lyme disease: A review of the medical literature. Advances in Infectious Diseases, 16(1), 73–87. https://doi.org/10.4236/aid.2026.161005
Optimizing Exclusion Criteria for Clinical Trials of Persistent Lyme Disease Using Real-World Data
Johnson, L., Shapiro, M., Needell, D., & Stricker, R. B. (2025). Optimizing Exclusion Criteria for Clinical Trials of Persistent Lyme Disease Using Real-World Data. Healthcare, 13(1), 20. https://doi.org/10.3390/healthcare13010020
Does Biological Sex Matter in Lyme Disease? The Need for Sex-Disaggregated Data in Persistent Illness
Johnson, L., Shapiro, M., Janicki, S., Mankoff, J., & Stricker, R. B. (2023). Does Biological Sex Matter in Lyme Disease? The Need for Sex-Disaggregated Data in Persistent Illness. International Journal of General Medicine, 16, 2557–2571. https://doi.org/10.2147/IJGM.S406466
Access to Care in Lyme Disease: Clinician Barriers to Providing Care
Johnson, L. B., & Maloney, E. L. (2022). Access to Care in Lyme Disease: Clinician Barriers to Providing Care. Healthcare, 10(10), 1882. https://doi.org/10.3390/healthcare10101882
Antibiotic Treatment Response in Chronic Lyme Disease: Why Do Some Patients Improve While Others Do Not?
Johnson, L., Shapiro, M., Stricker, R. B., Vendrow, J., Haddock, J., & Needell, D. (2020). Antibiotic Treatment Response in Chronic Lyme Disease: Why Do Some Patients Improve While Others Do Not? Healthcare, 8(4), 383. https://doi.org/10.3390/healthcare8040383
Feature Selection from Lyme Disease Patient Survey Using Machine Learning
Vendrow, J., Haddock, J., Needell, D., & Johnson, L. (2020). Feature Selection from Lyme Disease Patient Survey Using Machine Learning. Algorithms, 13(12), 334. https://doi.org/10.3390/a13120334
Removing the Mask of Average Treatment Effects in Chronic Lyme Disease Research Using Big Data and Subgroup Analysis
Johnson, L., Shapiro, M., & Mankoff, J. (2018). Removing the Mask of Average Treatment Effects in Chronic Lyme Disease Research Using Big Data and Subgroup Analysis. Healthcare, 6(4), 124. https://doi.org/10.3390/healthcare6040124
Severity of Chronic Lyme Disease Compared to Other Chronic Conditions: A Quality of Life Survey
Johnson, L., Wilcox, S., Mankoff, J., & Stricker, R. B. (2014). Severity of chronic Lyme disease compared to other chronic conditions: A quality of life survey. PeerJ, 2, e322. https://doi.org/10.7717/peerj.322
Healthcare Access and Burden of Care for Patients with Lyme Disease: A Large United States Survey
Johnson, L., Aylward, A., & Stricker, R. B. (2011). Healthcare access and burden of care for patients with Lyme disease: A large United States survey. Health Policy, 102(1), 64–71. https://doi.org/10.1016/j.healthpol.2011.05.007
MyLymeData lets patients lead the way to help find a cure.
Add your Lyme data to MyLymeData today!