MyLymeData Lyme Disease Research

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 previously unknown.

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.

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 effectiveness.

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 short-term treatment approaches or who are not diagnosed early.

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 from every state in the nation and have collected over 2.5 million data points.

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 and are able to get on with their lives, and those who remain ill or whose course of treatment is much more difficult.

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.

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.

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.

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).