MyLymeData Viz Blog
A Patient-Powered Research Project
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…
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…
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…
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…
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…
“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…
“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…
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…
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
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…