Chronic Lyme patients face huge obstacles in their quest to get properly diagnosed and treated. We at LymeDisease.org hear that from patients all the time (and have experienced it ourselves).

This year, however, we looked at the problem from a different angle. We surveyed Lyme-treating doctors, asking what barriers stymie their efforts to help their patients. And boy, did they tell us.

Some highlights: Treating chronic Lyme patients is complex, time consuming, and not covered by insurance. This shifts the healthcare costs to patients, many of whom simply cannot afford to pay these out-of-pocket costs.

Lyme-treating practitioners also face legal challenges as well as professional stigma from their medical peers.

All this contributes to a severe shortage of Lyme-literate practitioners—right when we need them more than ever. Resolving this supply/demand imbalance is one of the most critical challenges facing the Lyme community today.

Our study was recently published in the journal Healthcare.  We’ll use this data in our push for healthcare policy change. Our goal is to make access to care easier for both Lyme patients and the clinicians who treat them.

Why am I telling you this? Because this survey is an important example of what LymeDisease.org can accomplish with the support of people like you.

Here are other things your support helped us achieve in 2022:

Providing information to patients and the public

We remain the largest and most trusted communications hub in Lyme disease, giving timely, accurate news and commentary through our website, blogs, weekly newsletter, and social media platforms. Our journal, the Lyme Times, can be read online or downloaded as a PDF. We provide a symptom checklist and a physician directory to patients seeking diagnosis and treatment. We also offer an online patient support group.

Representing the Lyme community

We amplify the patient voice in a variety of ways. For instance, representatives from our organization served on Tick-Borne Disease Working Group subcommittees, gave public testimony, and drafted key portions of the panel’s reports to Congress.

Along the way, we kept the Lyme community informed about the Working Group. Without our news coverage, Lyme patients would have had no easy way to stay abreast of developments that could profoundly affect their future.

MyLymeData patient research project

• 17,000 participants have enrolled in our MyLymeData registry, a collaboration between patients and researchers seeking a cure. Data from this project has resulted in five peer-reviewed journal articles to date—adding to the Lyme disease scientific knowledge base.
• In addition to research, MyLymeData provides Lyme advocates with the facts and figures they need to promote public policy reform. For example, the Pennsylvania Lyme Resource Network used this data to create a comprehensive Legislative Information Packet in support of Lyme legislation in their state. In addition, information from the registry has been cited over 100 times in Tick-Borne Disease Working Group reports.
• We collaborate with the Lyme Disease Biobank (a Bay Area Lyme Foundation project) as well as with researchers from the University of Washington and UCLA.

Organizational changes

LymeDisease.org went through some changes in 2022. After serving more than 30 years as our President, founder Phyllis Mervine has retired from “active duty.”

She is now on our newly formed emeritus board, along with two other long-time board members, pharmacist Mitch Hoggard of Chico, California, and Barbara Barsocchini, of the Los Angeles County West Vector Control District. We sincerely thank all three of them for their dedication and service over many years.

Phyllis Mervine is a hard act to follow, but I have been tapped to take her place. With your support, LymeDisease.org will keep up its efforts on behalf of Lyme patients.

Thank you for standing with us over the years. Whether you have Lyme disease or love someone who does, you understand our passion to improve the lives of patients.

We can only do this with your help. If you’re able to do so, please make an online donation today.

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