Lyme Blog Posts

A decade ago, LymeDisease.org introduced MyLymeData, now recognized as the largest patient-driven registry for Lyme disease in the United States. What is a patient registry? It’s a system that collects information about patients with the same medical condition, in order to figure out the best ways to improve their care. Why is this significant? Because before MyLymeData, there was little real-world information about the many ways that Lyme disease affects individuals, especially those who stay ill for months or years. Unlike traditional research models, MyLymeData puts the power of information directly into the hands of patients, enabling them to shareView More

Anyone who was around during the late 1960s is sure to remember these words: “Come on people now…Smile on your brother…Everybody get together…Try to love one another…Right now.” Jesse Colin Young and the Youngbloods were not the first to record the song “Get Together,” but their version became a huge hit and helped propel the group to stardom. In 1972, the band broke up, and Young continued on with a successful solo career. And then, he started having serious physical and psychiatric problems that turned out to be Lyme disease, which he eventually wrote about in a song called “Lymelife.”View More

You might not think that a mini-series called “Girl at a Bar” is about Lyme disease. But it is. Or more specifically, it’s about a young woman trying to return to normalcy after Lyme disease stole five years of her life. “Girl at a Bar” is the work of Tracy Mullholland, an actress, writer, producer, and singer who lives in Southern California. Though fictional, it’s based on her personal experience with tick-borne illness. “I wanted to use my story to create a series that raises awareness for Lyme disease and gives voice to the millions of people suffering from LymeView More

California’s Board of Pharmacy (BOP) has been trying its darnedest to restrict access to IV glutathione and other alternative treatments. (See here for background on the issue.) Yet, vociferous opposition by chronic Lyme patients, the state’s firefighters, and others have turned this issue into the opposite of a “slam dunk” for the board. Instead, there have been months of postponed votes, additional comment periods and other delays, leading to what was supposed to be a final showdown at the board’s March 6 meeting in Sacramento. Guess what? The BOP delayed the vote again and offered yet another 15-day comment period,View More

For almost a year now, the California Board of Pharmacy (BOP) has been trying to impose severe restrictions on so-called “Category 1 sterile compounds,” much to the dismay of chronically ill patients and the state’s firefighters. Now, the deadline is getting closer, where the BOP must either pass the proposed regulations–or scrap them and start over. The targeted substances include certain forms of glutathione, Vitamin B12, and other alternative treatments. As Austin Murphy, a reporter for the Santa Rosa Press-Democrat newspaper, explains: The new rules would make it more difficult for Californians to get the ‘Category 1’ meds that haveView More

On January 8, the California Board of Pharmacy (BOP) was discussing potential restrictions on Category One sterile compounds, including nebulized and IV glutathione. Glutathione is not only beneficial for Lyme disease patients but also proven to help firefighters recover from lung damage caused by their dangerous work. In a twist of irony, on the same day, large parts of Los Angeles County were engulfed in what would turn out to be one of the most destructive fires in California’s history. As thousands of firefighters risked their lungs battling the blaze, the BOP was considering limiting access to a treatment thoseView More