My mom used to always say, “If you want something done right, do it yourself.”

That’s exactly what MyLymeData is all about. It uses big data research tools which allow patients to quickly and privately pool their experiences to determine which treatments work best. The project can accelerate research into the disease, by helping scientists identify the most promising areas to investigate.

“Up until now, studies of people with Lyme disease were few and far between,” according to Lorraine Johnson, CEO of, sponsor of the MyLymeData project. “The largest one funded by the National Institutes of Health enrolled 129 patients—more than 15 years ago.”  Go to this link to hear Johnson present statistics about the abysmal lack of research on Lyme/MSIDS. (1 minute long)

A patient education conference called MyLymeData2017: Overcoming Lyme Disease will be held April 8 in San Ramon, California, and will present the results from the first national large-scale longitudinal study of patients with Lyme disease ever conducted, and will also include the following presentations: 

Lorraine Johnson, CEO of “Latest Results from MyLymeData”

Ray Stricker, MD. “Designer Drugs for Lyme Disease: The New Pharma Frontier?”

Christine Green, MD, “How to Combat Stealth Pathogens Like Lyme & Co-infections”

Raj Patel, MD, “Treating Mold Illness in the Context of Lyme Disease”

Jennifer Sugden, ND, “Pediatric Lyme Disease”

The event will be held at the San Ramon Community Center, 12501 Alcosta Blvd., in San Ramon, from 1-5 pm on April 8. Pre-registration is $35. Admission at the door is $40.

Register here:

More than 7000 patients have enrolled since MyLymeData began in November 2015. This puts it in the top 10% of patient-powered big data registries in the nation. Recruitment for the project is on-going.  Please have your voice heard and be a part of this project that is revolutionizing research done on Tick Borne Illness.

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