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MyLymeData is one of the largest patient-driven registries in the nation, with nearly 12,000 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.

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

Using MyLymeData to Build a Lyme Disease Research Engine

Using MyLymeData to Build a Lyme Disease Research Engine

In 2015, we launched MyLymeData, our patient registry and research platform. With over 12,000 patients enrolled, today, it is the largest observational study of Lyme disease ever conducted—and actually one of the largest patient driven registries in the nation—for any disease. We have patients enrolled

The problem of Lyme disease misdiagnosis

The problem of Lyme disease misdiagnosis

Misdiagnosis is unfortunately quite common in Lyme disease. Most patients with late or chronic Lyme disease were either misdiagnosed or waited years for their diagnosis—with devastating consequences. We know that early diagnosis in Lyme disease can spell the difference between patients who get well quickly

“Chronic Lyme disease” remains a contentious term

“Chronic Lyme disease” remains a contentious term

I was recently interviewed by Charles Seales of Newsy’s “The Why,” who asked me what I’d say to people who claim chronic Lyme disease is not a legitimate diagnosis.

“Super responders” are key to personalized Lyme disease treatment

“Super responders” are key to personalized Lyme disease treatment

Using patient-reported outcome data from 3,900 people enrolled in MyLymeData, we looked at how individual patients vary in their response to treatment. Finding out who responds well to which treatments—and then learning more about those people—is an important step towards developing personalized Lyme disease treatment.

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