LymeDisease.org is one of the most distinguished nonprofits for Lyme disease in the United States. In 2015 they created MyLymeData in the effort to improve treatments for this disease. 10-20% of those with Lyme disease experience treatment failure, a statistic that this nonprofit wants to fix. They are doing so through their patient registry, MyLymeData, which holds information from over 12,000 people.
About Lyme Disease
Lyme disease is a vector-borne disease that is typically spread through ticks. These ticks spread the bacteria Borrelia burgdorferi. According to the CDC, there are 30,000 cases reported annually.
Symptoms of this disease come in stages, so they differ depending on how long one has been infected. Three to 30 days after infection, a rash will appear at the site of the bite. Symptoms will follow, including fever, chills, fatigue, headaches, pain in the muscles and joints, and swollen lymph nodes. In the days or months following infection, symptoms will evolve into severe headaches, additional rashes, neck stiffness, facial palsy, severe swelling and pain in the joints, arthritis, dizziness, shortness of breath, an irregular heartbeat, nerve pain, inflammation in the spinal cord and brain, shooting pains, numbness, tingling, and pain in the tendons, muscles, joints, and bones.
A diagnosis is obtained through the finding of characteristic symptoms, asking about exposure to ticks, ruling out other conditions, and various lab tests. A two step blood test will be conducted in order to confirm a diagnosis.
Rapid diagnosis is important for effective treatment. If it is caught during the early stages, antibiotics can be a quick cure. People may also develop post-treatment Lyme disease syndrome, which requires additional treatment. Preventing tick bites or removing them quickly is a good way to prevent Lyme disease as well.
About MyLymeData
MyLymeData was launched in November of 2015 and has gained over 12,000 contributors since. Past studies of this illness include a maximum of 129 people, meaning that it is difficult to evaluate the reality of Lyme disease. On MyLymeDisease, patients share their long term healthcare data, allowing for medical professionals to better study this illness as there are more participants over a longer period of time.
This registry uses recommendations of the Agency for Health Research Quality as well as models of other rare disease registries. Using this format, MyLymeData has over three million points on Lyme disease. Information about everything from tick bites to treatment to quality of life has been gathered.
All of this information has allowed for LymeDisease.org to publish a peer-reviewed study that analyzes the entirety of data from the registry, along with a book that highlights that study. All of this research is allowing for medical professionals to learn more about Lyme disease and its treatment. A lower treatment failure rate may be possible in the near future.
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