Tick Talk: A Conversation about Lyme

Four speakers shared their expertise and personal stories with Lyme disease, a tick-borne disease caused by bacterial infection, on Tuesday, April 30.

The event was sponsored by Sam’s Spoons Foundation, a non-profit organization based in Pennsylvania that provides financial support for Lyme patients. Speakers included Mary Beth Pfeiffer, an investigative journalist and author of ‘Lyme: the First Epidemic of Climate Change’; Dr. Neil Spector, an oncologist and researcher from Duke University; Dr. Chris Turnpaugh, local Lyme practitioner and board member of Sam’s Spoons; Jeff Stauffer, a developer of tick tracking apps; and Stephen Smith ’92, president and CEO of L. L. Bean.

Lyme disease leaves many people with serious medical complications and treatments vary from patient to patient.

“Lyme is the most terrifying yet least reported health crisis in the U.S. Pennsylvania had the most reported victims last year and no one is immune,” says Logan Ditillo, a Lyme survivor attending the event. “Keep the consequences of Lyme in mind!”

Carrie Perry ’94, founder of Sam’s Spoons Foundation, advocates for her daughter, Sam, who combated Lyme in high school and is now healthier after treatment. In a video shared at the event, Perry’s daughter states that IGeneX testing helped her understand that she had Lyme disease.

“After a year and a half of taking antibiotics at a high dose every single day, it was wreaking more havoc on my body than it was leading me to wellness, so we decided to try hyperbaric oxygen therapy,” the video said.

Stauffer, chief insect information officer of TickTracker App, introduced how his app uses “data-driven, community-based, vector ecology tracking to unite citizens and scientists against tick borne diseases.” He also represented the LivLyme foundation based in Denver, Colorado.

Spector pointed to the similarities between targeted treatment of cancer, his area of expertise, and Lyme disease. “We have gone, in oncology, from everyone taking chemotherapy to us[ing] drugs that can activate the immune system.”

“Do not let health challenges define who you are or what you can do,” he said.

Pfeiffer explained the current political, scientific and clinical challenges associated with the narrative of Lyme in mainstream publication. “Lyme is not at all managed well. We know that because too many people stay sick,” she stated. Pfeiffer emphasized that Lyme is worldwide, climate driven and underestimated.

Turnpaugh discussed how remnants of the disease can linger in a body even after the disease has been treated. “You can treat Lyme, but if you are not treating the ghost of Lyme disease, you are not getting better,” he said.

Smith concluded with emphasizing the importance of learning more about tick prevention.   “Be vigilant about it, immediately process the information and turn it around and share with as many circles as you have.” His company prioritizes tick awareness for their employees, carrying out training for tick bite check, putting tick removal tools along their outdoor trails and developing products tick repellent products.

The documentary “Under Our Skin” was shown after the panel discussion. A livestream of the panel discussion can be accessed through this link: https://www.youtube.com/watch?v=iM5b9ZhXUMc.