In 1996, Jamie Refenes found a tick on her head. At the time, the 11-year-old was living with her family in Etowah. Her mother removed the insect with a match, and they continued on with their lives.
“Shortly after that, I started having major health issues, but we never connected the two,” she explains. “It started with slight memory loss and being unable to understand simple mathematical problems, and it moved into stomach problems and migraines.” But it wasn’t until 2011, when a Brevard physician tested Refenes for Lyme disease, that she found out what the problem was.
“It came back positive, and I was finally diagnosed and was able to start treatment,” she recalls. “The most difficult feeling to comprehend is when you are happy about a diagnosis, but for me, I was going to feel better.”
Refenes is not alone. According to Buncombe County Health and Human Services, the county had 21 reported cases of Lyme disease in 2018. Western North Carolina is a hot spot for the disease as well as other vector-borne illnesses (those transmitted by carriers such as mosquitoes, ticks and fleas).
In part, that’s because the damp, dark environment in Southern Appalachian hardwood forests is mosquito-friendly, notes Brian Byrd, associate professor of environmental health sciences at Western Carolina University. “We’re just blessed to have tons of trees around us,” he says. Unfortunately, those forests are home to “mosquitos that can survive from year to year. If small, daytime-active rodents like chipmunks and squirrels get infected, they tend to get a lot of virus in their blood for a short period of time, and the other mosquitos can get infected by feeding on them, so we get this cycle going on.”
Endemic in WNC
Byrd’s research focuses primarily on the eastern tree hole mosquito and the La Crosse encephalitis that it can transmit. WNC is one of five areas in the country where the disease is endemic.
Although there are more mosquitoes and mosquito bites in North Carolina’s coastal and piedmont regions, most La Crosse encephalitis infections turn up in the western part of the state, particularly among children younger than 15.
Every year, a dozen or more children end up contracting the disease, mostly between May and September, says Byrd.
Over the last decade, he notes, Lyme disease has also become endemic here, particularly in Buncombe and Henderson counties.
By the time Refenes was diagnosed, WNC doctors had become more familiar with the disease and so were more likely to test for it. For her, however, the intervening years had been characterized by debilitating illness, memory loss and an inability to work. During that period, Refenes moved to California and then back to Hendersonville to be near her mother when her symptoms became too much for her to handle on her own.
Upon her return, however, Refenes says she felt alone and searched for a way to find friends who could understand what she was going through.
“Being chronically ill, unfortunately, you lose friends. People don’t understand why you can’t come out, and they give up on you,” Refenes explains. “I joined Facebook support groups to talk to others like me, and I ended up meeting one of my very best friends through those. However, social media interactions weren’t enough: I wanted more support. I started my own Facebook group for locals to connect and eventually started having monthly meetings at Denny’s.”
This group now boasts dozens of members, including Jamie Farley, who was diagnosed with late-stage neurological Lyme disease in 2011 after seeing dozens of medical professionals and waiting months for answers.
When her symptoms were at their worst, remembers Farley, she was nearly bedridden, but she attended the group’s meetings when she was physically able.
“It was helpful to me to know that there were others who understood my daily struggle,” she says. “Living with an invisible illness can be isolating, because you don’t look sick. It helps to talk with others who know to look past your healthy appearance.”
Farley is currently in remission, but she remains active in the group to support and help others.
Another worrisome critter
Meanwhile, another disease-carrying predator, the Asian longhorned tick, is also attracting more attention locally. Little is known about the insect, says Byrd. First spotted in the North Carolina foothills, it hasn’t yet been found in Buncombe County, he notes.
“We’re not really sure how new it is: Now that we’re looking for it, we’re starting to find it in different places,” Byrd reveals. “This is a pretty fascinating tick and was discovered within the last couple of years but has probably been around a lot longer.”
It’s hard to say how the Asian longhorned tick will impact WNC’s human population, he continues, noting that up till now it’s mostly been found on animals.
Whatever kind of insect one is dealing with, says Byrd, it’s essential to take preventive measures to protect against any diseases they may be carrying.
The most important basic precautions, he explains, fall under the three D’s: drain, dress and defend.
Because mosquitoes begin as aquatic life forms, Byrd recommends getting rid of any standing water, whether it’s in flowerpots or clogged gutters. Eliminating those potential breeding places can reduce the number of mosquitoes around your home. Covering up bare skin also helps limit exposure.
Finally, he continues, use repellents to defend against insect bites. Byrd recommends the Environmental Protection Agency’s “find the right repellent” online tool to determine the best option for your specific needs.
Refenes, who is currently in remission and doing well, wholeheartedly agrees.
“Lyme is more serious than you’d ever think: It’s dangerous, it’s deadly and it’s an absolute life-ruiner,” she declares. “Take the tiny precautions when you’re hiking or just out for the day. Learn the proper way to remove a tick. Learn how to spot early Lyme symptoms. Educate yourself and your children. It might seem silly, but it can save your life.”
What to watch out for
For Refenes, the initial symptom was memory loss, but Byrd emphasizes that the onset of vector-borne illnesses is often more subtle (see box, “Staying Safe”). What begins as a fever or simple aches and pains, however, can quickly develop into a dangerous brain inflammation.
If such symptoms appear during peak season (May through September), it’s important to explore the possibility of a vector-borne illness in order to catch the disease early.
Both Farley and Refenes say they had a hard time getting a diagnosis but were glad when they finally had some answers and could begin receiving treatment.
“If you think you may be struggling with Lyme disease or another undiagnosed illness, don’t give up until you find answers,” stresses Farley. “You have the right to compassionate care. You have the right to be heard and believed about your symptoms.”