https://www.lymedisease.org/mylymedata-2025-research-chart-book/
2025 MYLYMEDATA Chart
This year marks a major milestone for the MyLymeData patient registry—our 10th anniversary. MyLymeData is a project of LymeDisease.org. Over the past decade, MyLymeData has transformed the landscape of Lyme disease research by putting patients at the center.
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2025 MyLymeData Chart Book
Capturing information about patients with chronic Lyme disease that was previously unknown.
To celebrate, we’re publishing the MyLymeData 2025 Research Chartbook—a visual summary of a decade of groundbreaking research, collaboration, and progress. The chartbook transforms the individual experiences of over 19,000 patients into actionable insights. It highlights the extraordinary power of patient-driven research to impact science and promote public policy change.
Since its launch, MyLymeData has:
- Enrolled over 19,000 participants
- Collected tens of millions of data points on symptoms, treatments, and outcomes
- Contributed to multiple National Science Foundation awards, working with artificial intelligence and academic researchers
- Published eight peer-reviewed big-data studies that have been cited over 100 times by other scientific publications and in reports to Congress
Recognition and Collaboration
The importance of MyLymeData was recognized by the National Academies of Science, Engineering, and Medicine in its report on the future direction of Lyme disease research. Most recently, we received a Congressionally Directed Medical Research Program grant to use artificial intelligence and data from the registry to better define and understand persistent neurological Lyme disease.
The MyLymeData 2025 Research Chartbook is a celebration of what we’ve accomplished together—and a springboard for what comes next.
Our work is deeply collaborative. We partner with the Lyme Disease Biobank (a Bay Area Lyme Foundation project), academic researchers from institutions including the University of California, Los Angeles, the University of Washington, Johns Hopkins University, the College of New Jersey, and industry scientists. We’ve also served on panels and advisory boards for the National Academies of Sciences, Engineering, and Medicine; the Tick-Borne Disease Working Group; the International Lyme and Associated Diseases Society; and the Columbia Clinical Trials Research Network.
Download The 2025 MyLymeData Chart Book
We invite you to download and review the chart book.
None of this would be possible without the patients who power this registry. Your willingness to share your experiences has fueled a decade of progress and helped shape the future of Lyme disease research. We are deeply grateful for your trust, your data, and your voice.
If you are a patient who is not enrolled in MyLymeData, please enroll today. If you are a researcher who wants to collaborate with us, please contact me directly.
The MyLymeData Viz Blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk.
MyLymeData is one of the largest patient-driven registries in the nation, with over 19,000 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.
It is possible that patients reporting Lyme flare-ups misattributed COVID vaccination side effects to Lyme disease since many of the symptoms overlap.
Sadly, the article regurgitates false statistics – namely that 32 million people in the US have been infected with the COVID, and more than 500,000 have died.
The folks behind MYLYME data should know better.
The CDC’s been lying about Lyme/MSIDS cases since the beginning. Why would they suddenly be honest about COVID cases when they are also behind the disease’s creation, the dangerous but ineffective mRNA gene therapy shots, push the deadly treatment protocols but deny lifesaving treatments, and reap from it financially?
COVID numbers used in this article are all patently false when you consider these facts:
- 86% of PCR-positive COVID ‘cases’ were not real infections but were merely people who tested positive but had ZERO symptoms. That means they were not sick!
- To inflate deaths, flu and pneumonia deaths were rolled into the COVID death count – even though it wasn’t COVID.
- The CDC combined test results that diagnose current COVID infections with test results that measure someone has ever had the virus. Those that once had the virus but are well aren’t sick!
- Then there’s the issue of ‘died with or died from‘ COVID.
- Then there’s the issue of how the ‘vaxxed’ account for 94% of COVID deaths and 4 of every 5 deaths are in the fully ‘vaxxed.’
- Hospitals are not to be trusted at all as they were financially incentivized on all things COVID.
Madison Area Lyme Support Group 