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My Lyme Data - Big Data - Lyme Disease Research

MyLymeData is a patient-powered research project. It was conceived by patients, is run by patients, and addresses the issues that patients care about. It lets Lyme disease patients learn from each other and provides data that can help drive Lyme disease research to improve their lives.    

IT’S PRIVATE. MyLymeData lets you determine who you want to share information with and what it can be used for. Your data may only be used for research that is patient-centered. You can change your privacy settings at any time. This puts control over privacy right where it belongs—with you. Data is stored securely offsite using encryption.  

BIG DATA CAN CHANGE EVERYTHING. MyLymeData expects to gather more data about Lyme disease than any research study has done before. Consider this: The largest Lyme disease trial funded by the National Institute of Health enrolled only 64 patients in the treatment group. Our patient surveys draw over 9,000 responses! We’ll use the information provided by patients to help figure out how to prevent and treat all stages of Lyme disease. It’s that simple.    

HOW IT WORKS. Patients with Lyme disease tell us about their experience, symptoms, treatments, and results. Periodically, they update their information to let us know what has changed. This allows us to better understand the progression of the disease and what works—and doesn’t work—to help people get better. It lets patients learn from each other and provides data that can drive research to improve patients’ lives.

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Samantha Heinrich 10 months ago

Here is some very interesting research, coming out of the MyLymeData patient registry on Gender Bias and chronic Lyme disease.

Dr. Stricker identified four major areas in Lyme disease where males and females are not alike:

(1) Women may attract more ticks and have more atypical Lyme rashes than men (Josek 2019).
(2) Commercial two-tier Lyme testing favors men over women, because men have more positive ELISA tests and more positive Western blots (Feder 1992, Rebman 2015, Schwarzwalder 2010).
(3) Women have an exaggerated response to Borrelia infection, with more inflammatory and inhibitory cytokines than men. This may promote the evolution of chronic Lyme disease. (Jarefors 2006).
(4) Women may have a higher treatment failure rate.

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