Why MyLymeData is so important to Lyme patients
MyLymeData2017: Overcoming Lyme Disease will present the results from the first national large-scale longitudinal study of patients with Lyme disease ever conducted.
The patient education conference will be held April 8 in San Ramon, California, and will also include presentations from four Lyme-treating physicians.
MyLymeData uses big data research tools which allow patients to quickly and privately pool their experiences to determine which treatments work best. The project can accelerate research into the disease, by helping scientists identify the most promising areas to investigate.
“Up until now, studies of people with Lyme disease were few and far between,” according to Lorraine Johnson, CEO of LymeDisease.org, sponsor of the MyLymeData project. “The largest one funded by the National Institutes of Health enrolled 129 patients—more than 15 years ago.”
LymeDisease.org launched MyLymeData to help change that situation. More than 7000 patients have enrolled since it started in November 2015. This puts it in the top 10% of patient-powered big data registries in the nation. Recruitment for the project is on-going.
In the following clip from the recent Focus on Lyme conference in Scottsdale, Arizona, Lorraine explains why it’s critical for the Lyme community to do its own research about Lyme disease.
how can i help my daughter , my husband and me suffer from Lyme disease and they trying to treat it as fybromalgia , lack of blood oxigen and and mine as rhumotoid
A good start would be to read Dr. Horowitz’s new book “How Can I Get Better?: An Action Plan for Treating Resistant Lyme & Chronic Disease.”
I contracted Lyme Disease over 10 years ago, treated with Doxycycline, and fortunately recovered. Is it pertinent that I be counted in these studies?
Yes. Go to MyLymeData.org .
When will the CDC wake up and realize there is chronic Lyme. Just join some Facebook groups and listen to what we have to say. Basically we are being killed over money
I have been out of work for 6 months. I was diagnosed in 2010. My genetic coding states that I fall within the 5% where the last stage progresses aggressively. No one in the state of Louisiana will treat me. I have deemed by doctors reports as havingredients severe underlying psychological issues, although my blood tests indicate otherwise. I have no income, because I have become so debilitated that I am unable to work. I’m crippled with pain, neurological issues, and now seizures. I have called the cdc in Atlanta and here in Louisiana. I am trying to get local reporters to do a story and what ever I can to bring awareness. May I be a participant in the study? I am already a member of your organization. Please consider. I’m not ready to die. I’m a single mother of 2 and they are my only emotional support. Thank you for consideration.
Anyone who has ever been diagnosed with Lyme disease can participate in MyLymeData. Here’s the link: https://www.lymedisease.org/mylymedata/
With Medicare, part D plans, and new laws-like the FDA not allowing for testing for heavy metals, saying it’s unnecessary, [although medicare drugs pharma are covertly loading us up], and primary doctors are ignorant, and infectious disease doctors are threatened from the CDC like the insanity with the opiate “crises”, turn people away, saying they can’t help us, there isn’t any desire to take-on poor or chronic Lyme patients. If one is sick and on disability, there are too many targets in too many ways, without support and lots of money.