WNC grapples with Lyme disease, Rocky Mountain spotted fever

In June, Alex Smith of Biltmore Village developed a crippling headache and a fever that spiked to 102. He lost his appetite and had overwhelming fatigue, but he couldn’t sleep. He assumed he’d caught a bad case of the flu.

Soon, Smith noticed a rash by his knee. It started out pink, then turned from red to purple and got very itchy. His physician told him, “That’s got to be from a tick bite.” The doctor prescribed a 10-day course of doxycycline — an antibiotic often prescribed for Lyme disease — as a precautionary measure.

But Smith’s condition worsened. So he returned to his doctor, who ordered blood tests. These came back negative for the antibodies that result from Lyme disease. However, the blood test revealed that Smith had Rocky Mountain spotted fever (RMSF), another bacterial disease spread by several types of ticks. The doxycycline helped Smith to eventually feel better, as the antibiotic is prescribed for both diseases. Still, he missed a week of work.

Smith is a recreation and environmental planner, sometimes outdoors, and says he suspects he probably has more knowledge than the average person about tick prevention. But even he was surprised by the chain of events. Although he hikes frequently, he hadn’t been in the woods recently. He hadn’t seen a tick embedded in his skin, and his doctor’s search through his hair didn’t turn up one. He doesn’t know where he got bitten or when.

Smith’s experience underscores the importance of Western North Carolina residents having an awareness of RMSF and Lyme, as both illnesses cause symptoms that are often mistaken for other conditions. And the consensus among health care professionals and disease sufferers is that a lot more education about the increased local prevalence of the ticks that spread them is imperative.

Tick talk

“It’s a myth that Lyme disease is new in this state,” says Marcia Herman-Giddens, a UNC Gillings School of Global Public Health adjunct professor who co-founded the nonprofit Tick-Borne Infections Council of North Carolina. Many people associate ticks infected with Lyme and RMSF with the Northeastern and the Western states, respectively.

But according to the Centers for Disease Control and Prevention (CDC), Lyme can be found across the eastern half of the U.S. in infected black-legged ticks (also called deer ticks). RMSF can spread from infected American dog ticks, which are also found in the eastern half of the U.S., and brown dog ticks, which are found nationwide. (Distribution maps can be found at avl.mx/dze.)

Herman-Giddens, who has a doctorate in public health, says the first reported case of Lyme “that was confirmed to be locally acquired” was in Wake County in 2009, and its presence may be attributable to “the black-legged tick … traveling down the Appalachian chain.” However, many health care providers who were trained before tick-borne infections like Lyme took hold here may not know this, says Biltmore Forest resident Angela Newnam, who has suffered from Lyme.

Newnam grew up in WNC and knew the region had ticks. But “I didn’t even know we had Lyme in North Carolina,” she tells Xpress.

She believes many health care providers have been trained to only look for a ring rash (a rash resembling a bull’s-eye) or to expect the presence of an embedded tick to confirm a bite.

“I never got a ring rash,” she explains. “But I started having very bizarre ailments: neuropathies, overly sensitive skin, nervous system kind of going crazy, body aches [that] eventually evolved to brain fog and blurry vision and just basically symptoms across almost every body part function.”

She saw a neurologist, a dermatologist, an ophthalmologist and physical therapists and received brain and spinal scans. Multiple blood tests said she was negative for Lyme disease, Newnam notes. She was misdiagnosed with early arthritis, lupus, chronic fatigue syndrome and fibromyalgia, among other conditions.

Newnam eventually learned that the antibody thresholds for a Lyme diagnosis are different for men and women, which she thinks many health care providers don’t know, either. In 2021, after five years of ailments, a polymerase chain reaction test, commonly called a PCR, confirmed a diagnosis for Lyme and tick-borne bacterial infections babesia and Bartonella.

Undercounted

Lyme has become more prevalent in WNC over the last five years, Herman-Giddens estimates. But how widespread are Lyme, RMSF and other tick-borne diseases? It’s difficult to quantify.

Positive cases of vector-borne diseases, such as from ticks, are required to be reported to local health departments, says Buncombe County Public Health nurse Susan Creede. The county then reports the cases to the N.C. Department of Health and Human Services (NCDHHS), which passes along those figures to the CDC.

The Buncombe County Department of Health and Human Services (BCDHHS) conducts an investigation about every report it receives from a health care provider in order to confirm cases, Creede says. A communicable disease nurse will follow up with a patient about a positive lab analysis.

Since January of this year, Buncombe County has received 104 reports of Lyme, says BCDHHS spokesperson Stacey Wood. Of those, 19 have been confirmed cases, five met the definition for suspect or probable cases and 23 are currently under investigation.

Everyone with whom Xpress spoke about tick-borne illnesses acknowledges that Lyme and RMSF are more prevalent than the current confirmed cases. If a person has symptoms associated with Lyme, a doctor often prescribes doxycycline without initiating a blood test for confirmation, Creede explains. (This is what Smith’s doctor did.) That is useful in the sense that if the patient actually has Lyme or RMSF, the antibiotic can prevent it from worsening. However, since only positive cases of Lyme and RMSF are reported to health departments — not just evidence of ring rashes or tick bites — an untold number of cases aren’t officially being reported to the state and CDC.

In fact, Herman-Giddens says the CDC’s figures about Lyme in North Carolina — 2.39 confirmed and probable cases per 100,000 residents in 2023, per NCDHHS Lyme disease surveillance data —  are just “the tip of the iceberg.”

Testing themselves

The NCDHHS Division of Public Health Communicable Diseases Branch can test ticks found on humans and large animals to identify species for surveillance purposes. However, BCDHHS and NCDHHS don’t test ticks for potential pathogens. Both departments can only confirm positive cases based on blood work.

Some residents are taking it upon themselves to get ticks tested by private labs. On TickReport.com, for example, for $50-$200 depending on the services, individuals can find out what diseases a tick is potentially carrying within one to three days. This information can be useful if they experience symptoms. Not everyone who is bitten by an infected tick will necessarily become infected themselves.

In June, Hannah Consky felt a tick on her earlobe while putting on earrings. As she was 29 weeks pregnant, she found this slightly unnerving. Her husband removed it with tweezers. The tick was fed, but not fully engorged, Consky says, and her husband, who is a physician, recommended getting it tested rather than starting her on antibiotics. He placed the tick in a zip-close bag and mailed it to a lab in Boston to be tested for a $50 fee, she says. Fortunately, the report didn’t indicate the tick was infected with anything concerning.

While BCDHHS collects countywide data on vector-borne diseases, Newnam is informally gathering information about people in Biltmore Forest who experience symptoms. The town is heavily forested and home to many deer, which ticks feed from. She is spearheading tick testing through a local task force, Lyme Education and Awareness Deliver Solutions (LEADS): Residents collect ticks in zip-close bags, and Newnam mails them in batches to be tested at private labs. The town of Biltmore Forest foots the bill for these tests, covering $1,500 in testing last year, with an additional $1,000 budgeted through 2025, according to Town Manager Jonathan Kanipe.

In summer and fall 2023, Newnam tested 75 ticks that people collected off themselves or their pets. Among them were positive infections of Lyme, Bartonella, RMSF and, in some cases, four or five pathogens in a single tick, she says. This year, she continues, she’s only mailed ticks that were attached to people. Of the six she’s sent out so far, half tested positive for Lyme. She says she has 20 more ticks ready to mail and anticipates collecting and sending off another batch in midfall.

Newnam also keeps a list updated with local cases of people who had symptoms, like a ring rash, and/or got a positive test; she does not count people who simply found a tick or had a tick bite or people who took antibiotics preventively but had no symptoms (even if they had the tick tested and it came back positive). She notes that her list would be a lot longer if she included those categories. But so far, she’s gathered the names of 50 potential Lyme infections — 40 in adults and 10 in children. (Newnam emphasizes that she isn’t a health care provider and the information in her list isn’t officially confirmed.)

Armed with hyperlocal information, Newnam seeks to educate Biltmore Forest’s 2,000 residents about preventing tick-borne illnesses. She’s given presentations to her neighbors, relying on CDC data; in the quarterly LEADS print newsletter, she shares advice on making residential yards “as tick-unfriendly as possible” by discouraging deer and mice.

There are “a lot of things from the landscaper perspective that you can do,” Newnam says, citing the removal of leaves, debris and thickets from yards. Even if a person doesn’t walk through a thicket themselves, pets might do so and bring ticks into the house. She adds that there are spray programs that can kill ticks in residential yards, though she notes some people prefer not to do that out of concern they might hurt pollinators.

Radar focus

Newnam says her work through LEADS is meant to put tick-borne illnesses “on the radar screen” for more people.

Smith, for example, has had previous exposure to Lyme, which he learned from an antibody test administered due to past health issues, he says. But he admits RMSF hadn’t been on his radar.

He calls his experience with the condition “startling,” especially after the communicable disease nurse from  BCDHHS who contacted him to follow up on his report said RMSF is rare in WNC. The department has also confirmed two cases of RMSF in 2024, says spokesperson Wood.

“I do feel lucky my doctor even thought about [testing for tick-borne infections],” he says. From reading up on RMSF, “I know if you don’t treat it and just let it go, it can get very bad.” According to Johns Hopkins Medicine, untreated RMSF can lead to nerve damage, hearing loss and, in rare circumstances, death.

“Honestly, if I didn’t see a rash on me, I probably would have assumed it was just something I was going to get over if I stayed in my bed for a few days,” he says.