Tick Talk: Panelists, public share experiences with Lyme disease ‘epidemic’

Last modified: Friday, June 20, 2014
NORTHAMPTON — When panelists at a forum on Lyme disease Tuesday listed symptoms that often go unrecognized by doctors, many heads in the audience were nodding.

Many of the approximately 130 people at the standing-room-only Tick Talk event at JFK Middle School were victims of the disease or had loved ones who suffered from its effects. Others were parents, seeking advice about how to keep ticks off their children because the stakes are so high.

It was clear they had done their homework, but they still had a lot of questions on the tick-borne illness, how it’s diagnosed, and how to recognize and address chronic symptoms. But often, the panel of doctors and experts before them had to answer that Lyme disease is a complicated disease that is difficult to diagnose, test for, treat and manage long-term.

“There are varying degrees of Lyme disease,” said Northampton Dr. Charles Brummer, who has treated many patients with the disease.

“There is no actual standard protocol,” for treating it, he added. “There are too many variables.”

The event is part of a series of community forums hosted by the Daily Hampshire Gazette, WHMP radio station and Northampton Community TV.

In addition to Brummer, panelists were Stephen Rich, a professor of microbiology at the University of Massachusetts, and UMass student Lora Miller, both of whom research tick-borne diseases; Sheila Statlender, a clinical psychologist and expert in mental health issues that are symptoms of Lyme disease; Maria Malaguti, executive director of the Lyme Disease Research Center Inc. in Northampton; and Sydney Rackenberg-Loisel, a 20-year-old college student from Northampton who has suffered from chronic Lyme disease since she was 9.

Much of the two-hour forum was taken up with talk about unusual symptoms of Lyme and chronic Lyme and how they go undiagnosed by many doctors. Besides the usual headaches, joint pain and fever, some people suffer for years with gastrointestinal problems, chronic fatigue, anxiety and psychiatric or neurological disorders as a result of Lyme, the panelists said.

Most doctors in the Northeast — where Lyme is prevalent — will test for Lyme if the traditional symptoms present, but wouldn’t think of doing so because a patient has psychological or gastrointestinal problems, Brummer said.

“Do you think that’s a mistake?” asked WHMP broadcaster Bill Newman, one of the moderators.

“Oh, yeah,” Brummer replied.

Even if a doctor does test, there is a substantial chance for false positives and sometimes, false negative test results.

“This is a clinical diagnosis, not a lab diagnosis,” Brummer said. “The idea is to keep it in mind: ‘Could it be Lyme?’”

Some may only need a month of antibiotics and then will never see another symptom, while others have recurring symptom flare-ups and require long periods of treatment — sometimes years.

That’s the case for Rackenberg-Loisel, who missed most of the fourth grade due to headaches, joint pain and anxiety due to Lyme disease that went undiagnosed. Those symptoms eventually resolved for a period, but returned when she was 14. After her mother asked a doctor to test for Lyme, she was diagnosed and her symptoms were treated with antibiotics, including several years of intravenous antibiotics. Her symptoms have not yet been fully eradicated, though, and returned whenever she stopped taking the antibiotics, she said. Today, she is much better, though still on oral antibiotic treatment and she said her doctor believes she will be able to stop treatment eventually.

Rich, who tests ticks at UMass to see if they have Lyme or other tick-borne diseases, said some people who undergo treatment for Lyme and still have symptoms may have “co-infections,” other tick-borne diseases that require different treatments.

Many members of the public who spoke up or sent in questions for the forum inquired about how to convince reluctant doctors to consider their symptoms might be due to Lyme, or how to find doctors who are “Lyme literate.” Malaguti said the Lyme Disease Research Center will be able to help once it opens its doors, and the website www.ilads.org is also good resource.

They also questioned why there is not a vaccination for Lyme in the U.S., and Statlender said the only one OK’d for use in the country was quickly pulled from shelves in 2002, just a few years after its debut, due to public concerns about adverse effects.

“There are several efforts underway now,” she said.

In response to inquiries about the efficacy of insect repellents on ticks, Rich said repellents don’t help but acaricides that kill insects can be effective, if one is comfortable applying chemicals to clothing. “The ticks usually die before they get halfway up your pant leg,” he said.

Rich also warned the audience that the time of year matters in terms of the prevalence and relative danger of Lyme-infected ticks. “These are the smallest and most dangerous ticks, the next five to six weeks,” he said, since they are still tiny but have likely already fed on the mice that carry the Lyme bacteria.

The program will be rebroadcast on WHMP (AM1400/1240/FM96.9) at 8 a.m. Wednesday and on Northampton Community TV (Channel 15) at 7 p.m. Friday, 2 p.m. June 23, 8 a.m. June 25, 8 a.m. June 30, 7 p.m. July 2 and 2 p.m. July 4.

Rebecca Everett can be reached at reverett@gazettenet.com.