Tick-Borne Disease Working Group Special Issue SECTION

MyLymeData: A Patient-Centered Presentation to the Tick-Borne Disease Working Group

Tick-Borne Disease Working Group Special Issue

MyLymeData: A Patient-Centered Presentation to the Tick-Borne Disease Working Group

Lorraine Johnson, CEO of LymeDisease.org, shares data from the MyLymeData research project as well as her own personal experiences with Lyme disease.

By Lorraine Johnson, JD, MBA

How the Patient Voice Has Impacted the Tick-Borne Disease Working Group

Tick-Borne Disease Working Group Special Issue

How the Patient Voice Has Impacted the Tick-Borne Disease Working Group

Patients are coming together to have an impact and create change in Lyme disease policy. The patient voice has a powerful impact on the future of Lyme.

By Phyllis Mervine

Lyme Patients Involved With Tick-Borne Disease Working Group Offer Their Opinions

Tick-Borne Disease Working Group Special Issue

Lyme Patients Involved With Tick-Borne Disease Working Group Offer Their Opinions

Members of the Tick-Borne Diseases Working Group share their feelings about what being a part of the process has meant to them.

By Phyllis Mervine

The Lyme Disease Stories We Share

Tick-Borne Disease Working Group Special Issue

The Lyme Disease Stories We Share

Among the most dramatic parts of the Tick-Borne Disease Working Group meeting were the public comments, including patient's Lyme disease stories.

By Dorothy Kupcha Leland

Alpha-Gal “Red Meat” Allergy: A Serious Condition Caused by a Tick Bite

Tick-Borne Disease Working Group Special Issue

Alpha-Gal “Red Meat” Allergy: A Serious Condition Caused by a Tick Bite

Alpha-gal "red meat" allergy develops after a person has been bitten by a lone star tick and becomes allergic to meat.

By Dorothy Kupcha Leland

A Timeline of Comings and Goings Related to the HHS Tick-Borne Disease Working Group

Tick-Borne Disease Working Group Special Issue

A Timeline of Comings and Goings Related to the HHS Tick-Borne Disease Working Group

Over a period of six months, there were a number of personnel changes.

By Dorothy Kupcha Leland

Tick-Borne Diseases: A Big Problem in California

Tick-Borne Disease Working Group Special Issue

Tick-Borne Diseases: A Big Problem in California

LymeDisease.org founder, Phyllis Mervine shares her story of growing up in Lyme-endemic areas, and then contracting Lyme disease in Mendocino County, California.

By Phyllis Mervine

Lyme Disease Costs May Exceed $75 Billion per Year

Tick-Borne Disease Working Group Special Issue

Lyme Disease Costs May Exceed $75 Billion per Year

The CDC’s recent increase in estimated Lyme disease cases per year means we also need to update how we view real-world economic costs for Lyme patients.

By Lorraine Johnson, JD, MBA

The Undercounting of Lyme Disease

Tick-Borne Disease Working Group Special Issue

The Undercounting of Lyme Disease

We need accurate data about ticks, the infections they carry, and the number of tick-borne disease cases in all parts of the country.

By Phyllis Mervine

Why We Care About the Safety and Efficacy of Lyme Disease Vaccines

Tick-Borne Disease Working Group Special Issue

Why We Care About the Safety and Efficacy of Lyme Disease Vaccines

You don’t have to be an “anti-vaxxer” in order to raise questions about Lyme disease vaccines.

By Phyllis Mervine

How the LYMErix Lyme Disease Vaccine was Pulled from the Market

Tick-Borne Disease Working Group Special Issue

How the LYMErix Lyme Disease Vaccine was Pulled from the Market

Patricia Smith, president of LDA, identifies lessons we can learn from the LYMErix Lyme disease vaccine story and pitfalls we can hopefully avoid in the future.

By Pat Smith

Minority Opinion Is a Critical Element of the Tick-Borne Disease Working Group Report

Tick-Borne Disease Working Group Special Issue

Minority Opinion Is a Critical Element of the Tick-Borne Disease Working Group Report

A summary of how minority opinions influenced the Tick-Borne Disease Working Groups views on vaccines, treatment, and diagnosising Lyme disease.

By Phyllis Mervine

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