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Lorraine Johnson, JD, MBA: Presentation on MyLymeData Highlights

Lorraine Johnson, JD, MBA, CEO of presentation on MyLymeData Highlights at the Board Meeting in Burbank, CA, May 30, 2019.

The focus of the report is on the 3,903 patients who were enrolled during the first year of the registry. The report captures a lot of information about patients with chronic Lyme disease that was previously unknown. This is largely because real world data about patients with chronic Lyme disease has not been collected or analyzed. We have prepared a brief video of the Highlights.

What natural treatments work for Lyme disease? What are their side effects?

Patients with Lyme disease use a wide range of treatments to manage the symptoms and complications of their disease. These treatments include antibiotics, other prescription medications, and natural treatments. Lyme disease natural treatments are popular — either used alone (31%) or in conjunction with antibiotics (38%).

We asked participants in MyLymeData who were using natural treatments to tell us whether they were very effective, moderately effective, not effective or whether they were unsure.

Building A Lyme Disease Research Engine With MyLymeData

Lorraine Johnson, JD, MBA, CEO of and principal investigator of MyLymeData, presentation at the inaugural Lyme Innovation Roundtable at the U.S. Health and Human Services, office of CTO, Washington D.C.

The Lyme Innovation initiative aims to accelerate innovation in the prevention, diagnosis and treatment of tick-borne diseases through the development of next-gen technologies, interdisciplinary collaborations, and data-driven innovations for tick-borne diseases.

LymePolicyWonk: The Problem of Misdiagnosis in Lyme disease

Lorraine Johnson, JD, MBA, CEO of gave a presentation to the Society to Improve Diagnosis in Medicine (SIDM), a non-profit organization that seeks to bring together researchers and patients to reduce diagnostic delays and avoid missed diagnosis. is a patient partner in SIDM and values the opportunity to work with them to amplify the patient concerns about how misdiagnosis and delays in diagnosis harm patients. The speech — which draws on insights from the MyLymeData patient registry — highlights some of the factors that contribute to delayed diagnosis in Lyme disease.

Chronic Lyme Disease – “The Why” Interview

Many experts say chronic Lyme disease doesn’t exist. Others insist there is ample evidence of the condition. But what does the science say? Charles Seales of NewsY’s “The Why” spoke with Lorraine Johnson, CEO of to find out.

MyLymeData Lyme Disease Research Published 2018

The first study using information from MyLymeData has just been published in the medical journal Healthcare. Using patient-reported outcome data from 3,900 people enrolled in MyLymeData, we looked at how individual patients vary in their response to treatment.

MyLymeData2018 Conference: Seeking Cures Together’s Lorraine Johnson presents latest information from MyLymeData–the largest study of chronic Lyme patients ever.

Under our Skin Follow-up: The democratization of science’s Lorraine Johnson speaks with Under Our Skin director Andy Abrahams Wilson. They discuss what has changed regarding Lyme disease in the decade since the release of the award-winning Lyme documentary film.

Investigative journalist Mary Beth Pfeiffer speaks about the Lyme disease epidemic

Pfieffer, the author of “Lyme: The First Epidemic of Climate Change,” spoke at Saturday’s MyLymeData2018 conference in San Ramon, CA. In addition to the audience in the room, thousands more have watched the speech online.

Dr. Christine Green: Lyme Biofilms and Efflux Pumps

Dr. Christine Green, a Lyme-treating physician who serves on the board of, recently spoke on the topic of Lyme biofilms and efflux pumps–two factors that can directly affect treatment for Lyme disease.

Dr. Raphael Stricker: Is Long Term Antimicrobial Therapy Warranted in Lyme Disease?

Dr. Stricker, an internist and hematologist, is co-principal investigator of the MyLymeData project. He is an internationally recognized leader in tick-borne disease diagnosis and treatment, a board member of, and past President and board member of the International Lyme and Associated Diseases Society (ILADS). He also serves on the Lyme Disease Advisory Committee for the California Department of Public Health.

Lorraine Johnson’s speech from Focus on Lyme Conference

Lorraine Johnson, JD, MBA is the Chief Executive Officer of She is an attorney advocate on issues related to the medico-legal and ethical aspects of Lyme disease and has published over 40 peer-reviewed articles on this topic. She co-authored the Lyme disease guidelines of the International Lyme and Associated Diseases Society, published in 2014. She serves as a patient representative of the Patient Engagement Advisory Panel for the Patient Centered Outcomes Research Institute (PCORI) and sits on both the Executive and Steering committees of PCORnet, a national patient-centered big-data project. She chairs PCORnet’s Patient Council. In addition, she is co-chair of the steering committee of Consumers United for Evidence-Based Healthcare, a nationwide coalition of consumer groups associated with the international Cochrane Collaboration and serves as a consumer peer reviewer for Cochrane evidence-based protocols and reviews. She has spoken before state legislatures, US and international governmental agencies, and at healthcare policy conferences throughout the world. Her blog focuses on medico-legal ethics and healthcare policy issues related to Lyme disease.

Fox5NY Interview with Lorraine Johnson, JD, MBA, CEO of

Complete interview with Lorraine Johnson for Lyme & Reason 2.0

RT Interview with Lorraine Johnson, JD, MBA, CEO of

Why the Government is Suppressing the Lyme Disease Epidemic | Interview with Lorraine Johnson

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