Until a few years ago, Kathryn Skelley-Watts lived a packed life. She ran a vegetable farm with her partner in Yancey County, North Carolina, and in her off-time she skated with the Blue Ridge Rollergirls of Asheville. Then, one night in May 2015, after returning home from a friend’s birthday party, Skelley-Watts found a tick on her left calf muscle. She cussed it, then pulled it off and flushed it down the toilet.
At the farmers market the following Wednesday, she noticed some odd bumps on her neck. Soon she was covered in a rash. Her doctor recognized it as a likely tick-borne illness, but the test for Lyme disease kept returning with abnormal results. He put her on the antibiotic Doxycycline for two months.
She didn’t get better.
“It only took one tiny bug to change my world.”
In the ensuing months, fatigue and persistent flu-like symptoms nearly swallowed her whole. Two years later, she still hasn’t fully recovered.
“I used to be able to farm and commute and play roller derby and mountain-bike and run,” said Skelley-Watts. “Now my life has shrunk to farming and recuperating.”
Skelley-Watts, who has documented her journey in a blog on her website, is one of a growing number of people struggling with tick-borne illness, the most well-known of which is Lyme disease. In 2015 — the year Skelley-Watts was bitten — the Centers for Disease Control and Prevention documented significant upticks in the incidence of Lyme cases in Pennsylvania (from 50.6 confirmed cases per 100,000 persons in 2014 to 57.4 in 2015), Virginia (11.7 to 13.1) and West Virginia (6.1 to 13.2). Nationally, the CDC tallied a little more than 38,000 cases in 2015—a number generated by reports from state health departments.
It’s likely those figures are underreported, since Lyme is notoriously difficult to diagnose, much less confirm. The CDC conducted two studies in 2015 and concluded the number of actual diagnosed Lyme cases annually across the country is closer to 300,000.
“We don’t count all the Lyme disease cases in Virginia every year,” said David Gaines, state public health entomologist at the Virginia Department of Health. “We probably capture between a quarter and a third of them. We don’t have the epidemiological resources to investigate every case we encounter.”
What’s more, those numbers are likely to grow higher in coming years as the ticks that carry Lyme and other illnesses have spread into new regions. The blacklegged tick, blamed for carrying Lyme disease, had previously been relegated to colder climes in the northeastern United States. As the climate has changed, however, that species has spread south in the northern and higher-elevation parts of Appalachia.
“The highest numbers I’ve seen per unit area were in places above 2,000-feet elevation, which is why Floyd and Montgomery County and Pulaski County are such hotspots,” said Gaines. “It’s likely that the reason the ticks predominate in those high-elevation areas is the summer temperatures are relatively mild and tolerable to the ticks. When you get down into the Piedmont, conditions are too hot.”
Gaines said when he drags for ticks in a place like Richmond, Virginia, he’ll get a blacklegged nymph every 20 to 30 meters. In Floyd, he gets 2 to 3 ticks per 10 meters. He’s worked the last four years with a citizen researcher who collected for ticks in nearby Giles County, which borders West Virginia. When tested in a lab, about half of the ticks carried Lyme disease.
“I always thought my energy was the most vital piece of me. I wasn’t that good at school, I fall asleep when I read, and I could never sit still long enough to learn a musical instrument. But I know how to work hard, and I have learned the most from doing, moving, and busting ass. I valued not who I am, but what I could accomplish in a day. Lyme Disease has stripped me of my most valuable characteristic.”
The disorientation and loss of energy experienced by those suffering from long-term Lyme symptoms can be maddening, according to those who have suffered like Skelley-Watts. So can the frustration that comes from trying to navigate treatment from a medical community split on the severity of and proper response to the illness.
Stephanie Zucker and her family have lived just south of Morgantown, West Virginia for the last 13 years. In mid-May 2017, after hosting her second son’s high-school graduation weekend, Zucker first felt run down, then got hit with severe body aches. Fearing she was having a heart attack, she headed to the emergency room. She was hospitalized for a night with low white blood cell counts, then released with a diagnosis of a viral syndrome. After weeks of persistent severe neck and headaches — along with multiple doctor’s visits and another trip to the ER — Zucker insisted on getting tested for Lyme. The results came back positive.
Zucker now has referrals in process to three different infectious disease specialists, as a result of her primary physician telling her that he has little knowledge of treating Lyme disease. But those referrals are taking time, and she said she has little hope of seeing anyone before the end of July. To fill the gap, she went to the internet to read about the disease and consult with others in a growing online Lyme community. When she asked her doctor for some of the more aggressive treatments she’d heard about, he advised her to stay off those websites.
“I feel like my choices are limited,” said Zucker. “It’s super-frustrating, super-frightening for my long-term risks. And I’ve got an easy case because I’ve tested positive. Everyone knows I’ve got Lyme disease.”
A significant portion of the medical community, however, believes that Lyme disease is overdiagnosed. The cases that occur immediately after bites, known as acute Lyme, are mostly straight-forward. The problem lies more with chronic Lyme disease, which entails long-running symptoms that linger for months and years, including aches, fatigue, fever, confusion, headaches and more. In cases where there was no initial diagnosis of acute Lyme, patients can find themselves trapped in an endless routine of doctor’s visits and various treatments.
Making matters even more complicated is the unreliability of Lyme testing. Various products are available for doctors to test for the presence of borrelia burgdorferi, the bacteria responsible for Lyme disease. In the hotly competitive American pharmaceutical and medical market, the effectiveness of these products are disputed among doctors.
The blacklegged tick carries more illnesses than Lyme disease, and it’s also not the only tick on the move: The lone star tick is expanding its range as well. Both species carry an array of infectious agents, and they’re both appearing in new places, where doctors are sometimes unfamiliar with the various ailments, their diagnostics and their treatments.
Add in the wild card of patients self-diagnosing via websites like WebMD and you’ve got the raucous, contentious debate that’s unfolding over Lyme disease in Appalachia and beyond. Caught in the confusing jumble are patients dealing with symptoms that are sapping their ability to do basic things from day-to-day.
“The hardest part about being sick is grieving my old self. Somedays it feels like a past life, when I was healthy and strong. I could work 10 hours, ride my bike, attend roller derby practice, cook a nice meal, drink beer with my friends, and wake up and do it again and again. My life now couldn’t be more different. My days involve taking pills and naps. My schedule revolves around doctors’ appointments and anticipating the next crash.”
Erika Pallie can empathize with those suffering from chronic Lyme disease. As a medical student, she watched her step-father struggle with symptoms while receiving negative tests for Lyme. When one eventually came back positive, he received more targeted treatment that put him on the path to recovery.
Pallie began her own ordeal with Lyme Disease in 2003, becoming increasingly debilitated as she went through a litany of invasive tests in search of a diagnosis. When her mother saw that she couldn’t even get out of bed, it triggered memories of her husband’s symptoms. Pallie went to the same doctor her father had seen and started receiving targeted antibiotics. When she was tested for Lyme disease, it came back overwhelmingly positive. Recovery took a long time, with ups and downs occurring over months.
In her family practice in Morgantown, Pallie started noticing Lyme-like symptoms in more of her patients, and she began treating them for it.
“Word got out that I would test and treat,” said Pallie. “I ended up with this pre-selected, self-diagnosed cohort of patients coming from all over the region. Not just all over the state, but people coming from Pittsburgh, Ohio, North Carolina, Virginia.”
The end result was that her practice was flooded with Lyme patients, including the worst of the worst, whose complicated problems often involved multiple body systems. The hospital discouraged Pallie from treating these cases, insisting they should go instead to infectious disease specialists. At the time, she said, she was told by those specialists that they deliberately not testing much for Lyme, based on an epidemiological principle that states if one tests a lot for a rare illness, false positives will result.
“Doctors in West VIrginia won’t test people because they don’t believe it’s a big problem here, but that’s a self-perpetuating fallacy,” said Pallie. “They don’t believe it’s here so they don’t test for it so they don’t find it so they don’t report it. But people are getting sick all the time.”
Stretched between the medical bureaucracy and her patients, the pressure grew too great and Pallie resigned from her practice. Today, she works in a clinic that treats only opioid addiction. Even so, she still receives requests two or three times a week from Lyme patients seeking help.
Gaines, the Virginia entomologist, sees the other side of that issue. Lyme disease has become a catch-all to blame for people who can’t find other explanations for their illnesses, he said. Websites and quack doctors spread inaccurate and unscientific information, he said, with the result that many people seize on Lyme treatments as a possible solution to whatever they are experiencing.
Two years after she had been diagnosed with Lyme disease and forced off the track, Skelley-Watts traveled with the Blue Ridge Rollergirls to Portland, Oregon, where the team competed in the Women’s Flat Track Derby Association’s Division 2 playoffs. She dressed in a squirrel suit and cheered her old teammates on as they won two games to become WFTDA’s 2017 D2 champions. She celebrated with her friends, but couldn’t help but to imagine what it would have been like if she was still jamming for them. It was heartbreaking.
The upside was that Skelley-Watts had been able to afford much of her treatment with health insurance obtained through the federal marketplace as part of the Affordable Care Act. As small-scale farmers, she and her partner Rett Murphy weren’t covered by employer-provided care. Prior to the Affordable Care Act, Skelley-Watts had been denied coverage because of an autoimmune digestive disease that was considered a pre-existing condition. Obamacare changed all that.
“With Lyme disease, you’re kind of forced to go beyond standard medicine,” said Skelley-Watts. “A lot of the doctors I go to aren’t covered by my plan, but to this point all of my labs and all of my prescription medication has been covered, which has been huge. I really don’t know where we’d be without it.”
With Congress still considering a repeal of the ACA, Skelley-Watts has been closely watching news coverage and making sure that her prescriptions get filled as soon as they’re available.
She’s come a long way since the tick bite of 2015, documenting much of her progress on her blog. Her overall well-being, however, is of a fraction of what it was before Lyme disease.
“I’d say as my life has shrunk,” said Skelley-Watts. “I’m definitely really fortunate that I really do love my work, and I have a really incredible partner, so that’s been enlightening for me. But that being said, I think my social life is pretty much the farmers market. I’m not able to go out with my friends, or to run through the woods with my girlfriends or roller skate, or do things just for fun. I think I probably miss that more than anything.”
A native of the Alleghany Highlands, Mason Adams (@MasonAtoms) is a contributing editor of 100 Days in Appalachia and has worked as a journalist in the Blue Ridge Mountains since 2001. He lives with his family plus dogs, cats, chickens and dairy goats in Floyd County, Virginia.