LymeTimes Tick-Borne Disease Working Group

Tick-Borne Disease Working Group, established by Congress as part of the 21st Century Cures Act gives patients a seat at the table to develop recommendations for the federal response to tick-borne disease prevention, treatment and research.

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How the Patient Voice Has Impacted the Working Group

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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.

Balanced Lyme Disease Stories Benefit Tick-Borne Disease Working Group

Balanced Lyme Disease Stories Benefit Tick-Borne Disease Working Group

The purpose of having balanced Lyme disease stories is to provide some human interest to incentivize Congress to fund Lyme disease research.

Lyme patients Involved with Tick-Borne Disease Working Group Offer Their Opinions

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.

Two Standards of Care for the Diagnosis and Treatment of Lyme Disease

Two Standards of Care for the Diagnosis and Treatment of Lyme Disease

LymeDisease.org’s Lorraine Johnson gave the following verbal comments during the Tick-Borne Disease Working Group’s June 21 meeting.

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

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.

How the LYMErix Lyme Disease Vaccine was Pulled from the Market

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.

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

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

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

The Lyme Disease Stories We Share

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.

Alpha-Gal “Red Meat” Allergy

Alpha-Gal “Red Meat” Allergy: 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.

Tick-Borne Diseases: A Big Problem in California

Tick-Borne Diseases Have Become 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.

The Undercounting of Lyme Disease

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.

MyLymeData: A Patient-Centered Presentation to the TBDWG

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.

Lyme Disease Costs May Exceed $75 Billion per Year

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.

Minority Opinion Is a Critical Element of the Working Group Report

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.

One-Dose Doxy

One-Dose Doxy

Dorothy Leland submitted the following comments to the Tick-Borne Disease Working Group in advance of the June 21, 2018, meeting.

Overview of the Tick-Borne Disease Working Group: What Has Been Accomplished so Far?

Overview of the Tick-Borne Disease Working Group: What Has Been Accomplished so Far?

TBDWG subcommittees have been working nearly around the clock to ensure high-integrity reports will be ready for submission to Congress later this year and will include the most comprehensive viewpoints possible.

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