LymeDisease.org is a non-profit 501(c)(3) that serves the patient community through advocacy, education and research.
We were founded in 1989 as a small grass-roots organization in Ukiah, California. Today, we are one of the most trusted sources of information by patients – annually reaching over 3.5 million unique visitors on our website.
LymeDisease.org is grounded in the principles of patient empowerment, participation, and self-determination. We fight to make the patient voice stronger to
- support science-based advocacy
- bring about legislative change, and
- create a future where Lyme patients can receive the treatments they need to get well.
LymeDisease.org empowers individual patients by educating them, amplifying their collective voice, and providing research tools like our published big data surveys and the MyLymeData patient registry. We believe that there is strength in numbers.
Patient Driven Big Data Research:
Over 10 years ago, we started collecting and publishing patient data through surveys of thousands of patients. Today, our big data project, MyLymeData, is the largest study of Lyme disease ever conducted–with over 10,000 patients enrolled. The National Science Foundation has granted $800,000 to academic researchers at UCLA and Claremont McKenna to explore big data techniques using data from the registry.
One of our key goals is patient involvement at all levels of decision making, from research project selection to guideline development and, ultimately, to individual treatment decisions. Our CEO, Lorraine Johnson, is a co-author on the Lyme disease treatment guidelines of the International Lyme and Associated Diseases Society. When legislation to form the federal Tick-Borne Disease Working Group was being enacted, over 14,000 Lyme patients used our legislative tools to close the vote within a matter of days. We advocate for patient voices to be heard in health policy-making circles and at the physician’s office. We encourage all concerned with Lyme disease to become advocates for change—to improve the plight of the Lyme patient by increasing public awareness and pressing for legislative research solutions.
- Lyme patients must have access to quality medical care.
- Patients have the right to be shown respect and that those involved in their healthcare should be accountable.
- Patients have the right to make choices about their doctors and their treatment options.
- Patients must be given the information necessary to make informed choices.
- Research that matters to patients must be funded.
- Patients must have a voice whenever policymakers make decisions about Lyme disease.
These issues are urgent. We challenge the status quo and hold public officials accountable as we shine a public spotlight on controversy.
RawlsMD.com, Dr. William Rawls
Author of "Unlocking Lyme" Book
William ("Bill") Rawls, MD, graduated from Bowman Gray School of Medicine at Wake Forest University in 1985. He holds his medical license in North Carolina.
Dr. Rawls has written extensively on health topics, including Lyme disease, fibromyalgia, and Chronic Immune Dysfunction. He’s the author of Suffered Long Enough
and Unlocking Lyme
, and has contributed to various health sites.
Aside from his writing, Dr. Rawls serves as Medical Director for Vital Plan, an herbal supplement and wellness company he co-founded with his daughter, Braden.
Lyme Ninja Radio
Producer Mackay Rippey
"Sometimes it seems like you need Ninja skills to defeat Lyme disease. Join acupuncturist Mackay Rippey and his producer, Aurora, as they bring you interviews with interesting and informative people who are using their unique skills and knowledge to deal with Lyme and other tick born diseases. My name is Mackay Rippey, I'm an acupuncturist in Clinton, NY (http://www.mackayrippey.com)and the host of Lyme Ninja Radio. I'll never forget the Sunday morning I dragged my sorry-feeling-self to the bathroom and found a perfectly formed bullseye on my left arm. I was lucky, able to return to my acupuncture practice after only few days. It's possible to beat the bacteria that are making you sick. I have and so have many others, but you have to be smarter than Lyme. That's why I created Lyme Ninja Radio.Join us as we talk to some of the most interesting people in the Lyme community."
Dr. Nancy Fox
- Director of the L.E.A.F. Program "Lyme Education Awareness Foundation"
- Author of "No Ticks Please", "The Parasite Convention", the Lyme Disease Prevention K-12 Curriculum, etc.
- Director of "The Lyme Education Tour" which provides education to children in the area of Lyme Disease Awareness & Prevention (on-going classes held at schools, camps, institutions, etc.)
- On-Going Workshops and Events like "Tick Safety Workshop"
Lyme Disease Health Coach, Neurosciences & Evolved NLP Practicioner
Catherine is a Health Coach specializing in Healing from Lyme Disease. As a chronic Lyme survivor, Catherine has first-hand experience and is a wonderful resource to help guide you on your Lyme Disease Healing Journey. Catherine offers a powerful online course entitled "Life Over Lyme". Her expertise may save precious time, money and energy as you learn how to optimize your Lyme healing and get your life back!
"When facing Lyme disease, doing a little bit of this and little bit of that isn't the answer. Any treatment must contain the 5 pillars that Catherine has discovered from extensive research of the Lyme experts and included in her powerful herbal protocol that helped her recover from chronic Lyme in a year. She combines this science-based protocol with neuroscience-based coaching to help people transcend any physical or emotional barriers that might hinder the healing process. That's how her clients are able to save time, money and health on their Lyme healing journey"
Arminlabs, Dr. Armin Schwarzbach, MD PhD
Arminlabs is a laboratory specializing in tests and diagnosis of tick borne diseases and offers clear, informative reports with greater sensitivity and specificity. Arminlabs is located in Augsburg, Germany.
Dr. Armin Schwarzbach is a specialist for laboratory medicine and infectious diseases. He has been working in the field of diagnostic tests for Borrelia burgdorferi and coinfections for more than 20 years. Armin has tested more than 20,000 patients for different tick-borne diseases and multiple infections.
Having acquired a broad range of expertise, Dr. Schwarzbach recognized the problem of insensitivities and lacking standardization with regard to Borrelia burgdorferi antibody ELISA- and immunoblot-tests. He accomplished this by comparing these test results with the patients’ typical symptoms for Lyme disease.
Dr. Schwarzbach is member of the German Borreliosis Society, the Swiss Association for Tick-borne diseases, the German Association of Clinical Chemistry and Laboratory Medicine, the German Society for Medical Laboratory Specialists (DGKL) and the Australasian Integrative Medicine Association.
office phone: 0049 831. 78093150
Midcoast Lyme Disease Support & Education Conference
Founders: Paula Jackson Jones (President) & Angele Rice (Vice President)
"Building Bridges to Fight Lyme Disease Together"
A Maine-based non-profit support and educational conference for all things Lyme-related. Listen to keynote speakers, share and listen to personal Lyme journeys, gather information on healing modalities and diagnostics, network, meet friends and take a stroll to check out the booths.
"We don't have to do it all alone. We were never meant to." -Brene Brown