TOUCHED BY LYME: Thanksgiving in the Lyme World, 2019
Challenges faced by the Lyme community can seem like unclimbable mountains.
Sometimes it seems like it’s all bad news.
To counteract all that negativity, I believe it’s useful to acknowledge and celebrate the progress that’s being made.
This is the eleventh year that I’ve written a “Thanksgiving in the Lyme World” blog.
Here’s some of what’s on my gratitude list this year.
Disulfiram shows promising results as a Lyme treatment
This drug, also known as Antabuse, was used for years as a treatment for alcoholism. (Basically, if you take Antabuse and then ingest alcohol, you’ll feel horribly sick. So, it strongly discourages you from drinking.)
However, it turns out that disulfiram has other properties, too. Like an apparent ability to target Lyme disease and Babesia—and help some patients feel better than they have in years.
Read the following blogs by Dr. Daniel Kinderlehrer to find out more:
89 groups in 12 countries join Ad Hoc Coalition to protest IDSA
In June, the Infectious Diseases Society of America published its proposed new Lyme treatment guidelines. They are even worse than the last ones, which for years have made life difficult for Lyme patients. (Needless to say, I’m not grateful for that part.)
However, Lorraine Johnson of LymeDisease.org and Dr. Betty Maloney of ILADS examined the new guidelines thoroughly. Then, they wrote a comprehensive, line-by-line response, documenting errors and deficiencies throughout.
They then formed the Ad Hoc Patient and Physician Coalition, inviting other Lyme organizations to endorse their comments. Here’s the best part: 89 groups from 12 countries have joined the coalition, to speak with one voice. There’s never been a coordinated international response to the IDSA before!
Improvements in Lyme testing
A big problem in getting properly diagnosed with Lyme disease is the fact that standard, CDC-endorsed, Lyme tests have always been LOUSY. They often say you don’t have it when you actually do. Researchers have been working on this, and progress is being made. Read more:
“Healthcare” special issue on Lyme
Healthcare is an international, peer-reviewed, online scientific journal. It’s also open access, which mean anybody can read it for free. (Many journals put their articles behind hefty paywalls, making them largely inaccessible to the Lyme patient community.)
Recently, Healthcare published a special issue on Lyme Disease and Related Tick-borne Infections. It includes such diverse topics as a new test for tick-borne relapsing fever, Lyme-related psychiatric illness, and problems faced by families with Lyme disease.
MyLymeData continues to flourish. Download our free Chart Book.
MyLymeData is a way for individuals who have been diagnosed with Lyme disease to register their own experiences. You sign up online, and answer questions about your Lyme experiences. Over 12,000 Lyme patients have enrolled, making it the largest study of chronic Lyme patients ever conducted.
Participants answer questions like: How long have you been sick? Do you remember a tick bite? What are your worst symptoms? How many doctors did you see before you got diagnosed with Lyme? What treatments have you had? Did the treatment help or not?
Why is this important? Because this kind of information about persistent Lyme disease has never been collected before. This project will help answer questions that nobody has ever been able to answer. Analyzing this data could lead to finding more effective treatments, and ultimately, a true cure. That’s what we’re going for.
We’re also thankful for YOU
We’re grateful for you, members and friends of LymeDisease.org. With your support, we continue our efforts to empower Lyme patients through advocacy, education and research.
As our Thanksgiving gift to you, we invite you download a pdf of our special “Co-infections Issue” of the Lyme Times. We hope you’ll find it useful.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-President and Director of Communications. She is co-author of “When Your Child Has Lyme Disease: A Parent’s Survival Guide.” Contact her at firstname.lastname@example.org.