Panelists at Finger Lakes Community College discuss new research and discoveries surrounding tick-borne illnesses

Experts are at odds over “chronic Lyme disease.” Can the bacteria that causes Lyme keep making you sick after treatment? If so, do you have chronic Lyme disease? Or are you sick because of damage done to your tissues and immune system during the infection?

“There is no good evidence” of chronic Lyme disease, said Dr. Robert Ostrander, family physician and associate professor in the Department of Family Practice at SUNY Upstate Medical University. “The notion of being persistently infected is not the case,” argued Ostrander during a panel discussion at Tuesday’s forum on Lyme and Tick-Borne Diseases at Finger Lakes Community College.

Countering that view was panelist Holly Ahern, associate professor of microbiology at SUNY Adirondack and vice president of Lyme Action Network. In what she called “the creepiest study ever,” volunteers offered to let ticks feed on them to further research toward the question of chronic Lyme.

That study, now in its second round, shows “abundant evidence that these are not typical bacteria,” Ahern said. Other studies, too, indicate the same, she said: “These bacteria break all the rules.”

The forum featuring several experts was hosted by state Sen. Pam Helming, R-Canandaigua. A member of the New York State Senate Task Force on Lyme and Tick-Borne Diseases, Helming said she invited speakers from various disciplines to provide the most thorough picture of what is going on. Information is changing so quickly that a pamphlet she released with facts about Lyme and tick-borne illnesses had to be revised twice in the last six months, she said.

Coming off a public hearing the Task Force held in Albany last month, where members heard from citizens and various professionals, Helming said she is pushing for increased funding for research and education. A show of hands from the roughly 200 people who attended the forum indicated most everyone had personal experience with a tick-borne illness, either dealing with an infection themselves or knowing someone infected.

“That shows how important it is that we continue to offer forums such as this,” Helming said. This was the senator’s first informational forum on Lyme and tick-borne illnesses in her 54th state Senate District. It was just the beginning, “the first chapter,” she said, in tackling the problem.

Panelists were unified on most points, dispelling myths and emphasizing what’s known so far about prevention and treatment.

Lyme disease is the second-most infectious disease in the United States, just behind the sexually-transmitted chlamydia, which is number one.

Tick-borne illness are confirmed in all 50 states; the Northeast has the highest infection rates.

Panelist Mary Beer, director of Ontario County Public Health, said cases of Lyme in Ontario County skyrocketed in the past decade. In 2007, there were just three confirmed cases. By 2015, there were 27. So far this year, there have been 42. Beer expects by the end of 2017 the county will have about 200 cases, which will be a combination of confirmed cases and those that do not meet the U.S. Centers of Disease Control and Prevention definition. Since not all cases are confirmed, the numbers are actually higher, she said.

Beer added she has removed ticks from herself and is so far fortunate in not getting Lyme. Checking your body all over, especially in those warmest parts where tick gravitate, is crucial for prevention. “Be aware of your body and be very diligent,” she said.

Through an interactive quiz for the audience, Ahern highlighted what some of the medical and scientific literature says. An initial thought that you can’t become infected until 36 hours after a bite is false, she emphasized. You can become infected in just 12 hours or less, she said: “No amount of time is safe.”

Another myth dispelled: the telltale “bulls-eye rash.” Just 10 percent of people development such a rash that is considered a sign of infection. Forty percent get a flat rash, and 50 percent of people develop no rash.

“Don’t wait for the bulls-eye. It may never appear,” Ahern said.

Panelist Matt Frye, an extension educator with the New York State Integrated Pest Management Program at Cornell University, also debunked myths. Ticks can be active all year long — whenever the temperature is above freezing, he said. Ticks don’t jump or fly, but are stealthy.

“They wait for you to walk through their habitat,” he said. They are in tall grass and fields, as well as mowed lawns. Covering your body, wearing repellent or clothing with repellent, and being diligent about checking yourself over are vital for prevention, he said.

Cassandra Guarino, extension associate for serology and immunology for the Animal Health Diagnostic Center at Cornell University College of Veterinary Medicine, talked about tick-borne illnesses and animals. She addressed symptoms in dogs and said cats do not typically contract the illnesses. Horses can get Lyme and other tick-borne illnesses, while cattle typically do not. She mentioned Cornell University’s tick testing program, where people can submit up to six ticks for testing at a time. She urged people to participate, to help in research.

Ostrander, co-founder of Valley View Family Practice in Rushville and former president of the New York State Academy of Family Physicians, talked about working with your physician and addressed common questions from patients. Ostrander mentioned he was recently treated himself for Lyme disease. He talked about symptoms of tick-borne illnesses, how the diseases are diagnosed and the proper way to remove a tick.

Ostrander warned about all the different websites and chatter about Lyme disease on the Internet. “There are so many out there with agendas, and it’s hard to sort out what is good and what is bad information,” he said. He recommended the Mayo Clinic at www.mayoclinic.org.

Will there ever be a human vaccine for Lyme? Ahern, co-founder of Lyme Action Network, said research is moving toward that goal. She said work on a vaccine “looks promising.”

“All need clinical trials,” she said. The U.S. Food and Drug Administration “is trying to fast track that.”

They recognize Lyme and tick-borne illnesses are “a significant problem,” Ahern said.

Learn more

Mayo Clinic: Mayoclinic.com

Lyme Action Network: LymeActionNetwork.org

Cornell University, tick testing: https://ahdc.vet.cornell.edu/programs/tick/public.cfm

NYS Senate Task Force on Lyme and Tick-borne Diseases: http://a.pgtb.me/L00vd8

Living with Lyme

Suffering from tick-related illness or other health-related concerns? The Healthy Living Workshop, a free six-week set of classes, is offered through UR Medicine Thompson Health. Call 585-396-6111 or visit http://bit.ly/2hz1hQZ