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Touched by Lyme

an image of Dorothy Kupcha Leland

Dorothy Kupcha Leland

This blog has several goals. First, to explore the personal side of Lyme disease and how it affects individuals and families. Second, to highlight useful information for people seeking answers about this complicated illness. Third, to help foster a sense of unity and shared purpose among the many diverse members of the Lyme community. Dorothy, who serves as President of LymeDisease.org, has a family member with Lyme disease. She is co-author of a book called When Your Child Has Lyme Disease: A Parent’s Survival Guide.

David vs. Goliath: Lyme patients and firefighters stall BOP decision again

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 […]

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Touched by Lyme

The struggle for a normal life after Lyme disease

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,

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Touched by Lyme

Jesse Colin Young, the voice of ’60s anthem “Get Together,” later sang about Lyme disease

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

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Touched by Lyme

Ten years strong: How MyLymeData works to transform Lyme research

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

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Touched by Lyme

While L.A. burns, BOP ponders limiting vital treatment for firefighters–and Lyme patients

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

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Touched by Lyme

Will glutathione treatments survive? Controversial BOP deadline looms.

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

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Touched by Lyme