education, advocacy and research for Lyme disease
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How we discovered the top ten Lyme research priorities

Many people are suffering from Lyme disease and continue to suffer because research is lacking. Our CEO Lorraine discusses how we discovered the most important research priorities from the Lyme disease community.

Here are the top ten research priorities to the Lyme community

Many people are suffering from Lyme disease and continue to suffer because research is lacking. We reached out to the community and got thousands of responses back saying what they feel is the top ten things researchers should focus on.

Ally Hilfiger shares her experiences at Focus on Lyme 2017

Ally Hilfiger, daughter of famous fashion designer Tommy Hilfiger, has struggled with Lyme disease since childhood. We included an excerpt of her book “Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me” in our Fall 2016 Lyme Times issue. To take a look, click here.

Holly Ahern Speaks at Focus on Lyme 2017

Professor Holly Ahern, of State University of New York Adirondack, knows about Lyme disease from two different angles. One, as a microbiologist who has thoroughly examined the scientific literature pertaining to tick-borne diseases, and two, as the mother of a daughter with chronic Lyme disease. In this 2017 presentation she shares her expertise with wit and scientific data.

Lorraine Johnson speaks on importance of patient led research

In the following clip from the recent Focus on Lyme conference in Scottsdale, Arizona, Lorraine explains why it’s critical for the Lyme community to do its own research about Lyme disease.

Lorraine Johnson discusses how Lyme disease is mapped

At’s June board meeting, CEO Lorraine Johnson presented information on how different sources map Lyme disease.

Dr. Chris Green’s talk at MyLymeData2017

Dr. Green discussed “stealth pathogens” and strategies for combating them.

Dr. Stricker’s MyLymeData 2017 Conference Presentation board member Dr. Raphael Stricker serves as co-principal investigator of MyLymeData. In his presentation he discusses big data, big pharma, and precision medicine.

MyLymeData2017, Lorraine Johnson’s presentation

Lorraine Johnson, CEO of, presents results from MyLymeData in San Ramon, CA, on April 8, 2017. MyLymeData uses big data research tools which allow patients to quickly and privately pool their data to determine which treatments work best. Symptom Checker Jumbotron in NYC

Over 250,000 people have already completed’s Symptom Checklist. In December it went live in New York City’s Times Square, on a jumbotron. The link to the Symptom Checklist is at Symptom Checklist helps people get diagnosed sooner. You fill out a brief questionnaire that you can print out and take to your doctor.

Dr. Neil Spector Speaks at Focus on Lyme 2017

Dr. Neil Spector—one of the top cancer researchers in the US—suffered from misdiagnosed Lyme disease for many years. Although he was eventually diagnosed and treated for Lyme, by then his heart was so damaged, he needed a heart transplant. He chronicled the experience in his memoir, Gone in A Heartbeat: A Physician’s Search for True Healing. Since then, Dr. Spector has become a unique advocate for Lyme patients, calling for new ways to diagnose and treat the tick-borne illness. In this 2017 presentation he speaks as both a former patient and as a scientist.

Do Antibiotics Help Patients with Lyme Disease who are also Diagnosed with MS?

Our MyLymeData registry asks patients if they were initially misdiagnosed with another illness, and if so, what the illness was. About 20% of respondents were told they had a neurological disease. 14% were misdiagnosed with MS, and 2% with other neurological diseases; like ALS, Parkinson’s and multiple system atrophy.  When looking at this data, it is important to recognize that geography may play a big role in both the prevalence of neurologic conditions and Lyme disease in a particular area.

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