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MyLymeData is one of the largest patient-driven registries in the nation, with over 13,000 patients enrolled. It was created by patients, is run by patients and will address the issues that Lyme disease patients care about. MyLymeData Viz provides the community with results from MyLymeData. If you are enrolled in MyLymeData, we thank you for providing the data that will accelerate the pace of research in Lyme disease. If you are not enrolled, please enroll today.

Are antibiotics useful for treating chronic Lyme disease patients? MyLymeData study provides some answers.

Are antibiotics useful for treating chronic Lyme disease patients? MyLymeData study provides some answers.

One of the questions we have sought to answer through our MyLymeData patient registry: Why do some people improve substantially with antibiotic treatment, while others do not? Our recently published peer-reviewed study of over 2,000 participants from MyLymeData begins to answer those questions.

COVID-19 Impact on Lyme Patients: Survey Results through September 10, 2020

COVID-19 Impact on Lyme Patients: Survey Results through September 10, 2020

COVID-19 has disrupted life throughout the world for half a year now. In May, MyLymeData launched our COVID-19 Impact Survey to learn how the pandemic is specifically affecting the Lyme community. The survey covers topics like COVID diagnosis of MyLymeData participants or those in their

Lyme Disease Prevalence: Does Sex Matter?

Lyme Disease Prevalence: Does Sex Matter?

Earlier this year, MyLymeData kicked off an on-going gender bias study with Dr. Ray Stricker presenting on the topic.  I introduced his talk, focusing on the broader issue of gender bias in research—which has become much more widely recognized generally.

MyLymeData: My Data, My Trust

MyLymeData: My Data, My Trust

LymeDisease.org was founded 30 years ago as a non-profit grassroots organization grounded in the principles of patient empowerment, participation, and self-determination. Our patient registry project, MyLymeData, is part of this grassroots effort to amplify patients’ collective voices in patient-led research. MyLymeData is patient-led research The

2019 MyLymeData Chart Book released!

2019 MyLymeData Chart Book released!

We are pleased to present the 2019 Chart Book for the MyLymeData patient registry. MyLymeData has enrolled over 12,000 participants and is currently among the top 5% of patient registries in the nation. The report captures information about patients with chronic Lyme disease that was

Lyme Disease Stigma and Privacy Survey Results

Lyme Disease Stigma and Privacy Survey Results

MyLymeData surveyed patients on topic of privacy – The results showed that Lyme disease patients face disrespect and discrimination both within and outside the healthcare system. They also worry that healthcare data might be used against them by employers, insurers, and other healthcare providers.

What alternative treatments work for Lyme disease? What are their side effects?

What alternative treatments work for Lyme disease? What are their side effects?

We asked participants in MyLymeData who were using natural treatments to tell us whether they were very effective, moderately effective, not effective or whether they were unsure. This interactive blog shows how many patients have tried various types of Lyme disease natural treatments and their

Prevalence of Lyme disease is a big and growing problem — let’s look at the numbers.

Prevalence of Lyme disease is a big and growing problem — let’s look at the numbers.

For every year that we do not address the problem and find a cure for those who remain ill, the number of people living with Lyme disease increases. Very little research has been conducted regarding how best to treat patients who do not respond to