Putting Lyme Behind You: Basic Lyme for Patients, Family and Friends
Lyme Disease and MSIDS: Diagnosis and Treatment Protocols for the Chronically Ill Patient
Review of Lyme disease Diagnosis and Treatment
Using Integrative Medicine to Heal from Lyme Disease
Become a member and help us advocate for change, raise awareness and fund research that can improve patients’ lives. When you join, you’ll gain access to materials you won’t find anywhere else. View benefits of membership below.
We fight to make the patient voice stronger, support science-based advocacy, create legislative change, and to create a future where Lyme patients can receive the treatments they need to get well.
We are the largest communications network for Lyme disease and the most trusted source of information by patients. We put patients center and drive health care policy and science from the inside out.
Our big data project, MyLymeData, is the largest study of Lyme disease ever conducted. Your contribution helps continue this study.
Since 1989, LymeDisease.org has grown from publishing a single page newsletter into the largest communications network representing Lyme disease patients in the nation. Starting with our highly informative website, our content is widely distributed via blogs, social media, and our quarterly journal, the Lyme Times. Members of the board have published over 50 peer-reviewed publications.
The Lyme Times is our flagship publication. We inform the community about Lyme disease news, treatment approaches, research and political action through this quarterly journal. Join today to receive The Lyme Times.
We give patients voice and we amplify their power. Together, we fight for patient rights and for a seat at the table. Our large scale survey on proposed FDA regulation that would restrict access to lab tests drew over 8,000 responses in two weeks and allowed us to present patient views to the FDA. We joined with 5,000 patients to present survey results to the Infectious Diseases Society of America asking them to include patients with chronic Lyme disease on their panel. Patients deserve treatment guidelines that help them get well. Our CEO was an author on the treatment guidelines of the International Lyme and Associated Diseases Society and is actively involved in the arena of evidence-based medicine and patient-centered care, both nationally and internationally.
Solving the critical health problems faced by Lyme patients requires grassroots involvement as well as local and national advocacy. We work with local advocates to help provide them with the tools they need for their long-term legislation efforts to succeed. For example, using our Voter Voice platform, citizens of Massachusetts sent thousands of messages to lawmakers in support of a Lyme-related insurance bill in their state. That important bill became law in August 2016. There is strength in numbers when we work together! We also promote grass-roots efforts through our nationwide network of state-based internet groups.
Our patient-powered research tool, MyLymeData, allows individuals with Lyme to pool their personal experiences to help drive research towards a cure. Science is based on evidence. Patients need more than hope–they need proof. The estimated 1-3 million patients suffering from chronic Lyme disease today can’t wait years for clinical research trials. With over 16,000 patients enrolled, MyLymeData is in the top 10% of patient registries in the nation. We have published two of our large scale surveys on access to care and quality of life in peer-reviewed journals. LDo has funded research at Stanford, the University of Connecticut at New Haven, Stony Brook, and Johns Hopkins.
We provide patients with referrals to healthcare providers and we provide physicians with patient education tools. Nearly 300,000 patients have taken our symptom checklist and many have shared the results with their physicians to help foster earlier diagnosis.
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