ABOUT LYMEDISEASE.ORG 25th Anniversary Issue We advocate nationally for quality accessible healthcare for patients with Lyme and other tick-borne diseases. We are committed to shaping health policy through advocacy, legal and ethical analysis, education, physician training and medical research. We communicate our message in print and online. We connect and educate the patient community through net- working and state online support groups. We take the pulse of the Lyme community through patient surveys. We analyze and archive information in our quarterly journal, The Lyme Times, and maintain an educational website at lymedisease.org. We publish regularly in peer- reviewed medical and health policy publications. Online Support Groups Participate in education and advocacy activities in your state. Learn about local resources and receive technical support for your efforts. Exchange information and patient support conveniently from your home. To find your own LymeDisease.org is grateful for the special online state-based group, go to: health.groups.yahoo.com/ support of the following sponsors: group/(yourstatename)lyme. Jill & Ira Auerbach Website Sandy Berenbaum, LCSW, BCD Dolly Curtis Visit our extensive educational website at lymedisease. Marcia Datson org. Discover the basics at Lyme 101, read news and Brian Fallon, MD analysis, and check the events calendar. Sign up for our free Ken & Kerry Fordyce email newsletter. Suzanne MacDonald Fratus Facebook In Memory of Paul E. Lavoie, MD Georgia Lyme Disease Association Keep on top of developing news and share your own ex- Thora Graves periences and opinions by joining the conversation on our Bob Lane, PhD Facebook page: facebook.com/lymedisease.org. LDA of Southeastern Pennsylvania Twitter Lyme Disease Association Lyme Research Alliance Receive our tweets on your phone or computer. Follow Alan MacDonald, MD us at twitter.com/lymenews. MaineLyme Join the Effort Minnesota Lyme Association Participate in the Lyme community and make our col- Rene Rothstein Ginger Savely, DNP, MEd, FNP-BC lective voices even stronger. Visit us at lymedisease.org or Cynthia Sawtell complete the membership form in this issue. Laura & Dan Sawyer Leo Shea, III, PhD Virginia T. Sherr, MD FRONT COVER: The first issue of The Lyme Times was Patty and Harold Smith, MD distributed in 1989 by Phyllis Mervine. This collage of cover Sheila M. Statlender, PhD art represents the last 25 years of the only national journal Suzanne L. Stuttman dedicated to informing the Lyme community and the Beatrice Szantyr, MD public about Lyme and tick-borne diseases. Texas Lyme Disease Association Graphic Collage by MicheleLottDesign.com Janet Thietje The Lyme Times Volume 26 Number 1 2014 Photo: Phyllis Mervine Phyllis Photo: Phyllis Mervine and her family 1981 FEATURES 2 | EDITORIAL 11 | The Denialists 10 | ADVOCATES IN ACTION In the beginning, … Activism Comes of Age by Phyllis Mervine Resistance to emerging information has plagued Author recounts early efforts patient care since Lyme was first identified. that changed the Lyme debate. 3 | INTERVIEW 18 | The Pioneers by Jeannine Phillips Phyllis Mervine Starting with five volunteers, Early advocates faced the challenge and entered 12 | THE EARLY DAYS Mervine built LDo into a widely unchartered territory on behalf of patients. Ukiah volunteers were once the recognized advocacy nonprofit. Polly Murray only source of patient support. by R. Timothy Haley Willy Burgdorfer by Thora Graves 6 | ADVOCATES IN ACTION Paul Lavoie LymeDisease.org launched The First Decade Paul Duray as a patient advocacy group The unabashed history of John Drulle in Northern California grassroots LD advocacy is by Nancy Brown a tale of vision and fortitude. Ken Liegner by Phyllis Mervine Ed Masters Finding our way as a Charles Ray Jones fledgling organization built lifetime bonds. Joseph J. Burrascano, Jr. by Linda Hildebrand James H. Oliver, Jr. Robert Lane California patients gathered in Phyllis Mervine, Lorraine Johnson, Dorothy Leland, Andy Abrahams Wilson, producer Marin County, CA, dressed in green Cynthia Sawtell and Pam Cocks in Washington, DC at of Under Our Skin, filming at the for the 2007 Human Race. the first LDo patient advocacy workshop in 2009. LDo protest at IDSA 2013 SF. www.lymedisease.org 2014 VOL. 26, NO. 1 In the beginning … Published quarterly for members by LymeDisease.org www.lymedisease.org Before 1977 my dream was to have a large family by adopting a lot of Library of Congress No. 92-595999 children – maybe a dozen! – but then a tiny tick bit me and I became ISSN No. 1552-7506 profoundly sick. After 10 years of undiagnosed illness, I realized that dream was dead. As treatment finally re- TLT Production stored my health, I discovered a new mission in life – Editor in Chief: Phyllis Mervine, EdM to inform, support, share and empower people with Managing Editor: Pam Cocks, MPH, MLS tick-borne diseases. I created The Lyme Times and was swept along in the current of the pain and desperation Contributing Editor: I found across the country. I wanted to help in a bigger R. Timothy Haley, MA way. A nonprofit was the next logical step. I found Mental Health Editor: people who shared my dream and wanted to help. We Sandy Berenbaum, LCSW, BCD weren’t always sure where we should go, but we didn’t Online Editor: Dorothy Kupcha Leland let that stop us. Graphic Design: Michele D. Lott I have many people to thank for their early involvement and support. The woman who helped me get diagnosed; my vet who introduced Production Design: Jay Gamel me to the doctor who saved my life and became my mentor as I took those tentative first steps. I’m grateful to the neighbor who organized LymeDisease.org a fundraiser when our fledgling organization was broke and to our Executive Director: Lorraine Johnson, JD, MBA board members and others who came to countless meetings with ideas President: Phyllis Mervine, EdM and support and encouragement. From the lady who gave us our first VP Education & Outreach: Dorothy Kupcha Leland computer, to the researchers who joined us for dinner while they were Sr. VP and Secretary: Barbara Barsocchini, MBA dragging our property for ticks, to the doctors and scientists who vol- Treasurer: Mitch Hoggard unteered as speakers at our conferences – I remember them all with gratitude. Membership and Publications: JoAnne Vidal It has been a privilege to work with so many generous, smart and Please visit www.lymedisease.org. Write dedicated people. So much to do but what fun we had! I feel proud and us at P.O. Box 1352 Chico, CA 95927. amazed to see what LymeDisease.org has become. Not that our job is Phone 530.570.1811. Email Jvidal@lyme- complete, but my dream has come true. disease.org. Please contact us for written th year as an advocacy orga- So this year we are celebrating our 25 permission to duplicate or reprint any nization by publishing several special anniversary issues of The Lyme portion of The Lyme Times. Times. In this first volume we reminisce about the earliest days of patient advocacy. We have been laughing over old photos and remem- DISCLAIMER bering classic moments. I wish there were room to tell you more stories, Articles in The Lyme Times are not and hope you enjoy the ones we chose. We wanted this volume to intended as legal or medical advice capture our community’s history and accomplishments so our readers regarding the treatment of any symptoms may better understand our past, what the issues were, and what we or disease. Advice of your healthcare still need to do to reach our goal of a better quality of life and effective provider should be obtained before treatment options for patients suffering from tick-borne diseases. They pursuing any course of treatment. The say those who forget history are condemned to repeat it. We definitely Lyme Times makes no express or implied want to move forward. warranties as to the efficacy or safety of any The Lyme world has become a complex, contentious and fast-moving treatment and disclaims all liability for use place. We can only hope that people will focus – as LymeDisease.org of any such treatment. Opinions expressed has always done and will continue to do – on the important work of in articles are those of the authors alone trying to make a positive difference in the lives of patients. Let us know and not necessarily those of The Lyme if you want to get more involved. Times or LymeDisease.org. LymeDisease.org is a 501(c)(3) organization. © Copyright 2014 LymeDisease.org 2 The Lyme Times INTERVIEW: Phyllis Mervine, EdM Starting with five volunteers, Mervine built LDo into a powerful nonprofit By R. Timothy Haley she said. Lyme in horses. He put her in touch with A few weeks later her knee swelled up and a doctor – Paul Lavoie – at what is now When I was asked to interview the person a doctor sent her to physical therapy. After California Pacific Medical Center in San who has been the driving force behind the birth of her child, she didn’t bounce Francisco; luckily for Phyllis he was working The Lyme Times (TLT) for the last quarter back. She felt exhausted and developed ex- on human beings with Lyme. century, I thought it should be someone cruciating neck spasms. Even her beautiful who had worked with Phyllis Mervine from waist-long hair became too much to deal the beginning. That turns out to be a short with so one day she took the scissors and list. While encouraged by others, she, more cut it all off. than any other, is responsible for launching Her mother realized something was se- and sustaining TLT. riously wrong and insisted that she see I first came to admire this little periodical a doctor.