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Education, Prevention, Research & Advocacy




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2022 Tick-Borne Diseases Working Group- 3rd Report to Congress

To view full subcommittee reports and public meetings visit the HHS-TBDWG webpage

2018 Tick-Borne Diseases Working Group- Report to Congress

To view full subcommittee reports and public meetings visit the HHS-TBDWG webpage


Ultraparent Thinking
Written by Anna Brennan, a mother with Lyme disease that has raised four children with Lyme disease. Encouragement and resources to pull from for parents to develop the inner strength necessary to care for a child with health issues.

Finding Resilience: A Teen’s Journey Through Lyme Disease
At 13 years old, Rachel was diagnosed with Lyme disease and spent the next three years bedridden and in a wheelchair, in intense, body-wide pain while her family searched for answers. Now, in her 30s, Rachel has co-written the book “Finding Resilience: A Teen’s Journey Through Lyme Disease,” with her mother, Dorothy Kupcha Leland, sharing how battling Lyme disease can look from both the perspective of a teenager and a parent.

Recovery from Lyme Disease
The Integrative Medicine Guide to Diagnosing and Treating Tick-Borne Illness

Written by Dr. Daniel Kinderlehrer, this book provides patients with information that will guide them on their healing journeys, as well as supplying doctors with instruction on appropriate diagnosis and treatment approaches.

Chronic: The Hidden Cause of the Autoimmune Pandemic and How to Get Healthy Again

Steven Phillips, MD, and his former patient, singer/songwriter Dana Parish, take on the medical establishment. Chronic delves into the history and science behind common infections that are difficult to diagnose and treat, debunks widely held beliefs by doctors and patients alike, reveals how medicine got the facts patently wrong, and provides solutions that empower readers to get their lives back.

Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease  & How Can I Get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease

These books written by the internationally recognized Lyme disease expert, Dr. Richard Horowitz, MD (2013 and 2016) look at factors that can complicate Lyme disease diagnosis and treatment and offers a new way of looking at and treating chronic illness. His plan represents a crucial paradigm shift, without which the suffering will continue.

Bitten: The Secret History of Lyme Disease and Biological Weapons

Author Kris Newby is an award-winning science writer at Stanford University and the senior producer of the Lyme disease documentary UNDER OUR SKIN, which premiered at the Tribeca Film Festival and was a 2010 Oscar semifinalist. As a science writer, she was driven to understand why this disease is so misunderstood and its patients so mistreated. This quest led her to Willy Burgdorfer, the Lyme microbe’s discoverer, who revealed that he had developed bug-borne bioweapons during the Cold War and believed that the Lyme epidemic was started by a military experiment gone wrong.

Lyme: The First Epidemic of Climate Change

Author Mary Beth Pfeiffer shows ticks climbing mountains and crossing borders as temperatures rise, forests are fragmented, and species lost. Documents the human contribution to the dangerous spread of Lyme disease to dozens of countries and multitudes of people. But just as important, Pfeiffer challenges medical dogma that has dictated care for two decades and which holds, wrongly, that Lyme disease is straightforward to diagnose and treat. “Lyme” is firmly rooted in environmental and health science, relying on more than 300 peer-reviewed articles and dozens of expert interviews. Pfeiffer exposes the failure of government and medicine to prevent rapidly spreading infection, address poor diagnostic tests, and help many thousands of patients whose symptoms — body pain, crippling fatigue, and neurological, psychiatric, and memory issues — can linger long after treatment. She gives voice to patients whose illnesses have been dismissed, to doctors whose treatments have put their licenses in jeopardy, and to scientists whose studies strongly suggest the threat of ticks and Lyme disease has been underestimated and methods to treat it inadequate. “Lyme” is an impeccably researched account of an enigmatic disease that makes a powerful case for action to combat ticks, address the pain of patients, and recognize humanity’s role in creating an epidemic.

When your Child has Lyme Disease: A Parents’ Survival Guide

This book by Sandra Berenbaum, LCSW and Dorothy Kupcha Leland is filled with valuable information that parents need to know about Lyme, as well as practical strategies based on the authors’ personal and professional experiences.. Lyme disease can cause puzzling symptoms in children, including pain, fatigue, gastrointestinal upsets, learning disabilities, behavioral issues and psychiatric problems. The illness can be hard to diagnose, however, and Lyme-related controversies in the medical world complicate the picture. Parents seeking help for their suffering children often don’t know where to turn. This book offers guidance on finding the right medical care, coping with treatment, developing effective boundaries with others who don’t understand what your family is going through, advocating for your child’s educational needs and managing day-to-day family life. Finalist for the Eric Hoffer Award for Excellence in Independent Publishing. So wish this resource had been available when our children were diagnosed! Further resources available at

Gone in a Heartbeat: A Physician’s Search for True Healing

Dr. Neil Spector describes in great detail how he was misdiagnosed and, despite being a medical insider, was often discounted by his fellow physicians.  He encourages readers to never surrender their power to a third party and advocates for educated patients who can make informed decisions collaboratively and not simply follow instructions.

Lyme Disease Takes on Medicine

For more than thirty years, Daniel Cameron, M.D. has practiced medicine with a twist. When he began to see patients with Lyme disease, he continued to teach patients, but with his Public Health background, he also saw the need to teach a wider audience about the tick-borne disease. To that end, he started a blog he titled: All Things Lyme. In his blog, Dr. Cameron highlights important research about tick infections, Lyme treatment, testing, medications and other topics related to Lyme disease and co-infections. As the blogs accumulated, Dr. Cameron thought it a good idea to put the mini-essays into a book which would categorize them by subject matter. For those who like the feel of a page, the smell of the ink and love to scratch margin notes, there’s the traditional version. In short, this book, born of the blog titled, All Things Lyme, was designed with the needs of the reader in mind. What information might you need as a patient, as a care-giver, as a physician, as an advocate? It’s here; and Book Two is in the works. For more from Dr. Cameron visit

In the Crucible of Chronic Lyme Disease

This book is written by Dr. Kenneth Liegner, MD (2015). Following completion of his medical training and a one-year stint as attending physician on Howard Champion’s Surgical Critical Care Service and MedStar Unit at Washington Hospital Center in the District of Columbia, Kenneth Liegner, M.D. returned to Westchester County, home of his Alma Mater, New York Medical College, to start a private practice. Unwittingly, he had ‘plunked himself down’ in the heart of a burgeoning epidemic of Lyme disease. His patients confronted him with puzzling syndromes that defied ‘tidy’ formulations of the illness and thrust him in to a Maelstrom of medical controversy. One practitioner’s work over 25 years is presented here along with correspondence with many principals in the field. Documentational in nature and not written as a narrative, the materials, nonetheless, convey the intensity of the struggle to characterize the nature of Lyme disease and the desperate fight for proper diagnosis and treatment upon the outcome of which patients’ very lives depended.

Lyme Madness

Author Lori Dennis, provides a platform for the many voices of chronic Lyme sufferers, caregivers, and activists, along with the very few doctors and politicians all fighting for awareness, support and justice around the globe. Chronic Lyme disease is a complicated, confusing, and terrifying abyss—a black hole of human suffering, conflicting views, widespread corruption, and unrelenting medical navigation. Lyme Madness chronicles the author’s and adult son’s medical odyssey while capturing the current landscape of immeasurable suffering, twisted politics and medical madness that ensues worldwide.

Unlocking Lyme: Myths, Truths, and Practical Solutions for Chronic Lyme Disease

Dr. Rawls was in the middle of a successful OB/GYN career when Lyme disease interrupted his life. In his struggle to overcome it, he explored every treatment option – from conventional medicine to the full range of alternative therapies. Ultimately, he embraced modern herbal therapy as his preferred solution, but he recognizes that the path may be different for each person. Unlocking Lyme is the sum of Dr. Rawls’ experience, research, and practical solutions to date. In the years since his recovery, Dr. Rawls has helped thousands of patients find their path to healing from Lyme disease. Unlocking Lyme brings together Dr. Rawls’ accumulated knowledge and is the key you need to get your life back.

Cure Unknown: Inside the Lyme Epidemic

This book is written by Pamela Weintraub (2nd edition, 2013), a science journalist who specializes in health, biomedicine and psychology. Pam is senior editor at Discover magazine. She has excellent credentials in science and investigative journalism with 16 previous books to her credit. This is an incredible book, which not only chronicles the lives of several families stricken with Lyme disease, but also tracks the history which has led to the medical and political dilemmas that exist today.

Little Bite Big Trouble: A Bird’s Eye View of Lyme Disease

Author Sarah Schlichte Sanchez tells the story of a family with Lyme. Mamma Bird is so happy to finally have a family. But a mysterious illness is taking away her strength and stamina. This winsome story affirms the challenges to parenting with a chronic illness, specifically Lyme disease. It also educates children and gives them a deeper understanding of invisible disabilities. Sarah also hosts podcast, together with her husband Arron, where they explore the often complex social and emotional aspects that impact households across the country.

Lyme Disease is No Fun: Let’s Get Well!

This book is written by Mary Wall MS Ed, CCLS, a Columbia graduate student, and edited by Colleen M. Smith, a peer-review medical journal production editor and Johns Hopkins graduate. Each of these woman has battled Lyme disease as a child. Author Amy Tan has written the back cover note. It is published by Lyme Disease Association, Inc., national leaders in Lyme research, education, prevention and patient support. It is a resource written in language that conveys the experience of chronic Lyme disease to children ages 8–12.

The Widening Circle: A Lyme Disease Pioneer Tells Her Story

Polly Murray tells her story from the viewpoint of a patient who was a pioneer in the medical recognition of Lyme disease. Her personal investigation into the cause of her family’s illness, eventually initiated a medical investigation that led to the 1982 discovery by Dr. Willy Burgdorfer of the dangerous bacteria that causes Lyme disease. Unfortunately, almost 40 years later, Lyme disease remains a poorly diagnosed, controversial illness.

Lyme Disease Update: Science, Policy and Law

This book by Marcus A. Cohen is published by the Lyme Disease Association, written by a journalist and columnist for the Townsend Letter for Physicians & Patients, this book provides a comprehensive understanding of the scientific and political issues involved in the struggle for patient care that has been going on for two decades. NY Times bestselling author Amy Tan wrote the preface, describing her personal perspective on the difficulty getting diagnosed and appropriately treated for Lyme. The forward was written by Brian Fallon, MD, director of the Columbia Lyme and Tick-Borne Disease Research Center.

Lyme Disease: The Ecology of a Complex System

Written by Dr. Rick Otsfeld, a senior Scientist at the Cary Institute of Ecosystem Studies in Millbrook, New York. Dr. Otsfeld’s research has resulted in over 150 scientific publications. This book demonstrates the complexities of ecology and its role in public health and human pathogens. Dr. Otsfeld identifies Lyme disease as a model for understanding many other emerging infectious human and animal diseases.


The Quiet Epidemic

a young girl from Brooklyn and a Duke University scientist are diagnosed with a disease said to not exist: Chronic Lyme disease. The Quiet Epidemic follows their search for answers, which lands them in the middle of a vicious medical debate. What begins as a patient story evolves into an investigation into the history of Lyme disease, dating back to its discovery in 1975. A paper trail of suppressed scientific research, and buried documents reveals why ticks—and the diseases they carry—have been allowed to quietly spread around the globe.

“Under our Skin” and “Under Our Skin 2: Emergence”

“Under Our Skin” is an award winning documentary film released in 2008, “Under Our Skin 2: Emergence” is a sequel released in 2014. Both films chronicle the lives of chronic Lyme patients through their journey to recovery. In addition, it tells the story of the politics of Lyme, through the eyes of the very talented team of filmmakers at Open Eye Pictures, who left no stone unturned to uncover the truth.


Recordings from Lyme & Other Tick-Borne Diseases: 1st Rocky Mountain Forum

Held on May 7, 2016 at the American Mountaineering Center in Golden, Colorado, this event was sponsored by the Lyme Disease Association, Inc. (LDA) and hosted by the Colorado Tick-Borne Disease Awareness Association (COTBDAA), formerly the group Biting Back: Elevating Tick Awareness in Colorado (Monica White and Nancy Wrigley). Listen to Drs. Daniel Cameron and David Martz discuss Lyme disease diagnosis and treatment and what it’s personally like to have Lyme, respectively. LDA President Pat Smith provides a nationwide overview of Lyme & TBDs, now about 20, in the US; Toni Toelle, a Federal Agency Colorado firefighter presents TBD from her perspective; and President of COTBDAA, Monica White, talks about tick-borne diseases in Colorado.

Contagion®-9 recorded segments addressing issues of Lyme diagnosis and treatment

In May 2017, Contagion®, the nation’s leading digital and print publication that provides practitioners and specialists working in the infectious disease field with disease-specific information interviewed our National affiliate group leader, Pat Smith, President of Lyme Disease Association, Inc. to better understand current issues surrounding the diagnosis and treatment of Lyme disease.

This podcast program was founded by Sarah Schlichte Sanchez and husband Aaron Sanchez. They explore the often complex social and emotional aspects that impact households across the country. Authors, MD’s, patients, and other professionals join them on air.

Inside Lyme Podcast and Archived Lyme Disease Science Conversations

With Dr. Daniel Cameron
Learn about everything from diagnostic challenges to the emergence of new tick-borne diseases to Lyme disease treatment options with Lyme disease expert, Dr. Daniel Cameron.