When my family fell into the Lyme world in 2005, there were almost no books on Amazon with “Lyme” in the title.

There was little Lyme-related material on the internet.

And the Google News Alert I set for “Lyme disease” only sporadically returned any results.

We thirsted for knowledge in an information desert.

The sole bright spot in an otherwise desolate information landscape was the Lyme Times, a magazine devoted to the topic of tick-borne illness, published by the non-profit group now known as LymeDisease.org.

When I became involved with this organization, I wanted to help make it as easy as possible for Lyme patients and their families to get the information they need to get well.

In addition to the Lyme Times, we started running blogs on our website—offering news, features, and analysis about developments in the world of Lyme disease. When Facebook, Twitter (now X), and Instagram came along, we communicated through those channels as well. And we started sending out weekly email newsletters to keep our readers up to date.

A news hub for Lyme disease information

We function as a news hub for what you need to know: basic information about tick-borne illness, different treatment modalities, scientific advancements, the crazy politics of Lyme disease, inspirational stories, sources of financial help, and more. We also offer a symptom checklist, a physician directory, and a Lyme education events calendar.

Today, things are waaayyy different from the early days!  For instance, Amazon now lists hundreds of books about Lyme disease. Dozens of websites talk about tick-borne illness—some with accurate information, some not so much. And my Google News Alert delivers around 100 mentions PER DAY.

Nowadays, the challenge isn’t scarcity of Lyme-related information, but the opposite. With so much coming at you from all directions, it’s hard to figure out what to pay attention to. We find and analyze Lyme news from a wide variety of sources, passing along what we think is most important for you to know.

This essential service is only one of the ways that LymeDisease.org works on behalf of Lyme patients. We also represent the Lyme community in high-stakes conversations with Congress, health officials, policy makers, researchers, and the news media.

Moreover, our research project, the MyLymeData registry, harnesses the power of 18,000+ Lyme patients. Together, we’re building a knowledge base in Lyme disease to inform researchers, patients, and the public.

Your membership keeps us going

We do all this with your help. When you become a member of LymeDisease.org, it strengthens our collective voice. Your support enables us to continue providing critical information, advocating for better policies, and driving research that can lead to more effective treatments and, ultimately, a cure for Lyme disease.

Join us in this vital mission and help us make a difference in the lives of people affected by this insidious illness. Together, we can bring about the changes we so desperately need.

Click here to become a member of LymeDisease.org today.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.