Several local politicians held a Lyme disease forum with a panel of experts at the Big Flats Community Center Thursday, where the panel’s informative commentary coupled with frustrated audience members showcased how the disease was much more complicated than an innocent check for ticks after an afternoon hike.
“There’s a great deal of frustration here in this community, and across New York,” forum sponsor Sen. Tom O’Mara, R-Big Flats said. “Lyme disease is a difficult disease to diagnose. The treatment protocols are not clearly directed from either Department of Health or CDC (Center for Disease Control).”
Lyme disease is an illness spread by infected tick bites, predominantly black-legged ticks also known as deer ticks. It can cause chronic fatigue, joint stiffness, muscle pain, rashes, headaches and fever, among other symptoms. For some, the condition can have an extremely detrimental effect on quality of life.
Some said they suffered from an unknown, debilitating ailment for years because “archaic” testing and treatment, alleged lack of understanding by medical professionals and perceivably-ineffective diagnostic criteria prevented their doctors from determining they had Lyme disease all along.
“It kind of seems like we’re angry,” one audience member said while addressing the panel. “And we are.”
Once she learned she had the disease, she said she hasn’t received adequate treatment and that many others diagnosed are going through similar experiences.
“Yes we are angry, because we’re sick. And it’s not changing,” she added. “You educate our children and our schools about how to remove a tick… and I think it’s wonderful something’s being done. But for those of us that are currently sick, it’s not fast enough. And there are still people being diagnosed and still not being treated correctly.”
“The education does need to start in the medical community.”
“This forum and public education is a good first step,” another audience member said while addressing the panel. “But from my experience with Lyme, it’s a baby step. Resources need to go toward educating the medical community.”
C-PP High School English Teacher Adam Ruth said he used to lead an active lifestyle until he began experiencing unexplained symptoms more than a year ago, including “debilitating” fatigue, sore joints, and feeling “hungover” upon waking up.
“It took me a year-and-a-half to get a diagnosis,” Ruth said.
“Throughout that year-and-a-half, I had sinus surgery; they said it was mono, they said it was (other conditions),” Ruth said. “My doctor eventually told me it was depression.”
Ruth said the CDC’s diagnostic criteria for Lyme disease is rigorous and elaborate compared to other medical institutions, suggesting many patients may be misdiagnosed because their symptoms don’t meet CDC requirements.
“It’s archaic,” Ruth said of CDC’s criteria . “Lyme was never on my radar, because no one ever mentioned it to me.”
Panel member Dr. Richard Terry of Arnot Health acknowledged that medicine still has more work to do combating Lyme disease.
“Absolutely,” Terry said, when asked if he’d seen cases similar to those described by audience members. “I’ve treated some patients with chronic Lyme disease. The problem is that there aren’t any great protocols for some of the advanced stages.”
Terry said he’s optimistic that awareness campaigns such as the forum will encourage communities to take tick-borne pathogens more seriously, and for medical communities to continue developing better procedures and treatments.
“I think the key is educational events like this,” he said. “And I think on the flip-side, some education for the medical community would be very helpful.”
“There’s constantly new developments in this area, and we need to keep the doctors (aware) of the latest treatments and protocols,” he said.
If Thursday was any indication, O’Mara said the community already seems passionate about addressing the public-health concern posed by ticks.
“I was very pleased with the turnout today,” O’Mara said. “One of the largest turnouts to one of these types of forums that I have had. So it shows that the concern is there in the community.”