2500 people have enrolled in MyLymeData. Have you?
Nobody knows the exact number of people in the US who have chronic Lyme disease. Many experts believe that a fair guess would be between 1 and 3 million. What we do know is that research into the experiences of people with chronic Lyme disease has been almost non-existent.
The National Institutes of Health has funded precisely three studies of chronic Lyme over the past two decades—and there are no new ones in the pipeline. The largest of the three enrolled a paltry 64 patients in its treatment section. (Compared to thousands of patients in similar studies for other diseases.) Small treatment trials like this don’t offer much useful information for a disease that is highly complex. Most treatment trials need thousands of patients to detect meaningful differences.
LymeDisease.org believes that it is time for patients to quit waiting for research that may never come and start seizing the bull by the horns ourselves. Two months ago we launched a project called MyLymeData. It’s a tool designed to survey a large number of Lyme patients to find out their real-world experiences with the illness. How long ago were they infected? Are they still sick or have they recovered? What treatments did they try? What helped? What didn’t help?
Today’s big data computer technology allows us to combine all that information and find patterns. This can help us learn more about the natural progression of the disease as well as which treatments work best.
We intend to enroll at least 10,000 people in MyLymeData. And we’re happy to report that we are one quarter of the way there! As I write this blog, over 2500 people have registered. We hope you’ll help us spread the word, so that those numbers will continue to grow.
One feature of MyLymeData is a world map showing where people in the survey were bitten by Lyme-infected ticks. (Of course, not everyone knows where they received a tick bite. But if they do, it’s on the map.)
At this time, only people enrolled in MyLymeData can access the map online. (We’re showing you a screenshot of the US portion of it below.) When you look at the actual map within MyLymeData, you’ll not only be able to zero in on your state, but to counties within that state.
The more people who sign up for MyLymeData, the more points will be indicated on this map. We will be publishing reports on this and other data in the months to come.
MyLymeData is for Lyme patients of all ages and circumstances within the United States. We encourage parents to enter data on behalf of their children. Strict privacy protocols are in place.
Click here to find out more about MyLymeData.
LYME POLICY WONK 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.
Your Map will not open. Was infected in 2001 in Greene Co, New York first time then in 2008 and 2011 Cecil Co in Maryland. I was not treated until 2010 with antibiotics (doxy for 2 1/2 years. The government will love this cause to date I have funded the airline industry, the hotel industry and the medical industry to the tune of about $25,000 in trying to get better. I’m now seeing a doctor I truly believe has my health in a plan for wellness. Again out of pocket.
The map shown above is only a screenshot of the actual map. In order to open the map, you have to enroll in MyLymeData and follow directions within that program.
I don’t get the graphics. Where is the legend for it?
The graphic above is a screenshot of the actual map. If you register for MyLymeData, you’ll have access to the map, and can zero in on areas you’re especially interested in–such as your hometown or county.
I was bitten in 1992 at Bodga Bay ,CA i was bitten in 2004 Elk Grove, CA
I responded to this site on my wife’s behalf, because it mentioned fibromyalgia. Now that I’m here, I see nothing about that. She’s never been bitten that we can recall, and therefore only has her fibro diagnosis to go by. Is this FOR us, or not?
john,
YES! have your wife get a WESTERN BLOT blood test done and SENT TO IGENEX, CALIF. lyme diagnostic lab.
they do CO-INFECTION tests for other diseases ticks carry too.
http://www.igenex.com 1.800.832.3200
i have fibro/chronic fatigue, etc. i was MISDIAGNOSED 35 yrs. since i never saw a blood engorged tick in me; NO BULLS-EYE RASH OR STRANGE RASH.
bettyg, iowa lyme activist