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MyLymeData is one of the largest patient-driven registries in the nation, with over 16,000 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.

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.

Why Doesn’t the CDC Count Lyme Disease Cases in the South and the West? Everybody Else Does.

Why Doesn’t the CDC Count Lyme Disease Cases in the South and the West? Everybody Else Does.

We compared the number of Lyme disease cases reported by the CDC with the number of cases enrolled in MyLymeData state-by-state. In states that are not considered by the CDC to be endemic, the number of cases in MyLymeData surpasses those reported by the CDC.

Do antibiotics help patients with Lyme disease who are also diagnosed with MS?

Do antibiotics help patients with Lyme disease who are also diagnosed with MS?

LymeDisease.org’s Quick Byte on neurologic Lyme disease focused on how often Lyme patients are misdiagnosed with a neurologic condition including MS (Multiple sclerosis).

The importance of early diagnosis of Lyme disease

The importance of early diagnosis of Lyme disease

Our initial results presented at the conferences highlight the importance of early diagnosis of Lyme disease to improve patient response to treatment. 23% more patients who were diagnosed early reported being well compared to those diagnosed late.

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