Founder Phyllis Mervine Shares How Lyme Disease Support Groups are Critical

It is my true privilege to interview a woman who is a foundation stone in the living history of the Lyme disease epidemic. Phyllis Mervine started the first Lyme disease support group back in 1989. With her vision, hundreds of groups have sparked around the country. As a pioneer, Phyllis has gone on to create the vastly important monthly journal “The Lyme Times,” which shapes all the current civic, political, and scientific views around Lyme disease.

Initially called CALDA – the California Lyme Disease Association – her organization has been known as since 2011. Their very active blog site “Touched by Lyme” is chock full of Lyme disease daily news. With a mission to provide patient advocacy and education, promote research, and effect political change, changes lives for the better on a daily basis.

In this rare interview with Phyllis Mervine, I am deeply honored to learn from this great lady who has ushered in the modern Lyme disease movement.

PhyllisMervinePhyllis Mervine was infected with Lyme disease in California in 1977, but she was not diagnosed until 1987 when she met the great Dr. Paul Lavoie, who saved her life. Dr Lavoie did a community survey of her neighborhood. This brought researchers up to my area and began a long association with them, and a lot of interesting information from their studies.

She got a job coordinating local Lyme clinic, and started The Lyme Times. When the job ended, she wanted to continue so she asked the Santa Rosa Support Group for help forming a nonprofit, and several people volunteered. They kept up The Lyme Times and organized medical conferences and public forums for many years.
2001 was an important milestone for Herb Dorken became their lobbyist – the first and only Lyme lobbyist in the country. He was able to pass several pieces of legislation to help people stricken with Lyme disease.

A game-changer for the organization came when Lorraine Johnson, JD MBA, joined in 2003. Just 3 years later, the CT AG launched his civil investigation of the IDSA. This was Lorraine’s project. She has now published over 40 papers on Lyme disease, including the recent largest ever survey of people with chronic LD, and holds important positions on national healthcare policy groups. In 2012 Phyllis was given a Jefferson Award for public service. The Lyme Times is celebrating its 25th anniversary this year.

Please join us on Wednesday, June 18, at 1PM PT/4PM ET. Listen live at or on WBLQ in Southern New England. You can also find the episode on iTunes or at

Katina I. Makris, CCH, CIH

2 thoughts on “ Founder Phyllis Mervine Shares How Lyme Disease Support Groups are Critical

  1. My hero. Phyllis has been so kind, honest and helpful to me personally. I don’t know about her microbiome either but she has an alarming amount of energy. Don’t know how she does it all and the grandchildren too. What a thrill.

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