Lyme disease, the potentially debilitating tick-borne illness that was once a taboo subject among North Carolina doctors and epidemiologists, is on the rise in the state.
The state Department of Health and Human Services reported 30 confirmed and 236 probable cases of Lyme disease last year. In 2011, the department says, there were fewer than 100 cases in the state.
But the scale and distribution of Lyme disease cases, like many other questions about the illness, are disputed. Critics say DHHS has underestimated the spread of Lyme disease in North Carolina for years.
Lyme disease is caused by a bacteria spread by infected deer ticks. It causes flu-like symptoms and if left untreated can cause severe deterioration of cognitive and motor functions.
July is the peak month for Lyme disease cases in North Carolina, according to DHHS. Alexis Barbarin, the Division of Public Health’s tick expert, said prevention of tick bites is paramount to counter the disease’s spread.
“Unfortunately, ticks are going to be here probably for a long time, and we’re going to have to live and coexist with them,” she said.
The importance of prevention is one of the few things Lyme disease experts agree upon. Other aspects of the disease – where it is contracted, how widespread it is, even whether some patients have Lyme disease or not – are subjects of intense debate.
On one side of the debate is the U.S. Centers for Disease Control and Prevention. Until recently, the CDC’s position was that Lyme disease-carrying ticks had not spread to the South, and the disease couldn’t be contracted in North Carolina, said Marcia Herman-Giddens, a professor at UNC’s Gillings School of Public Health and founder of the Tick-Borne Infectious Disease Council of North Carolina.
Between 2000 and 2010, 861 cases of Lyme disease were reported in North Carolina, according to CDC records. During that period, the DHHS took the position that all of those people had become infected in other states.
“The state was denying that you could actually acquire it in North Carolina,” Herman-Giddens said.
This was problematic for Lyme disease patients such as John Dorney, who is now president of the N.C. Lyme Disease Foundation. Dorney says he got the disease while working outdoors as a state wetland scientist in Wilmington in 1992 – a time, he says, when the state was still “in denial” about Lyme disease.
Dorney went years without treatment, experiencing joint soreness, fatigue and loss of cognitive function. And because he didn’t receive treatment until years after exposure, he said the disease, relatively easy to treat if caught early, was much harder to get rid of – requiring months of intravenous antibiotics and years of pills.
John McLean said he contracted Lyme disease while camping at Morrow Mountain State Park in Albemarle. For eight years, he was misdiagnosed – first with depression, then anxiety, then early-onset Alzheimer’s disease – as he lost the ability to speak clearly and use his hands.
“The doctor said, ‘No, no, you don’t have Lyme, we don’t have Lyme in North Carolina,’ ” McLean said. “We have a lot of doctors who ignore it, who don’t treat it.”
During the denial period, patients who contracted Lyme disease were frequently misdiagnosed with conditions like fibromyalgia, multiple sclerosis or chronic fatigue, Herman-Giddens said.
Patients who suspected they had Lyme disease couldn’t get a positive diagnosis unless they left the state. McLean had to go to Washington, D.C., to finally be diagnosed with Lyme disease. He received two years of antibiotic treatment and recovered, and now runs a Lyme disease support group in Mecklenburg County, through the nonprofit National Capital Lyme Disease Association.
Reports of Lyme disease contracted in North Carolina only began to gain traction across the state around 2008, when the CDC was able to confirm the first non-travel-related case in Cleveland County. For the CDC to declare a case is not travel-related, the person with Lyme disease cannot leave the county of origin for 30 days after exposure – a standard Herman-Giddens calls “exceedingly strict.”
In 2009, Wake County became the first county to be CDC-classified as endemic for Lyme disease, meaning that it had two confirmed, non-travel-related cases. Between 2008 and 2015, 18 counties, in every part of the state, confirmed at least one local Lyme disease case.
In 2011, the DHHS released a memo acknowledging for the first time that it was possible to become infected with Lyme disease in the state. “Historically, it was once thought that LD could not be acquired in NC,” the memo reads. “This is no longer a true statement.”
The memo changed the way Lyme disease was viewed in the state, said Dorney.
“Before, there were a number of doctors in the state who said it didn't exist,” he said. “And every once in awhile, I hear parts of that still. But it’s much, much less common.”
Where is Lyme spreading?
The increase in cases of Lyme disease is attributable to the expanding range of deer ticks, also known as black-legged ticks, that carry the bacteria. Infected ticks were first discovered in the northeastern U.S. and have since spread to parts of the Midwest and, more slowly, to the South.
In 2015, deer ticks were reported in 60 North Carolina counties, twice as many as in 1996, according to a study published in the Journal of Medical Entomology.
Populations of deer ticks are closely linked to exploding deer numbers in the state, Herman-Giddens said. Other tick populations are also surging, including Lone Star ticks, which carry STARI, a disease similar to Lyme, and a mild variety of Rocky Mountain spotted fever.
But she said it is hard to know the extent of tick populations because of a lack of research. In 2011, the General Assembly cut state funding for a pest program that included tick control and research.
McLean said he does “tick drags” to see the numbers of ticks in Mecklenburg and Stanly counties and that he’s found two or three times as many this year as in previous years. “I have seen nothing like it,” he said.
But there is disagreement about where in the state Lyme disease is spreading.
The CDC and DHHS say Lyme disease is primarily coming south down the Appalachian Mountains from Virginia. While Lyme disease has been reported in virtually every county in the state, Barbarin, the DHHS entomologist, said she thinks most cases originate in the mountains, with exposed people not reporting signs of infection until they get home.
“Just because it looks like it is uniform across the state doesn’t mean that people are actually acquiring it in that county,” she said.
But non-travel-related cases in endemic counties such as Wake don’t fit that pattern, Herman-Giddens said. Such cases have been confirmed in counties as far east as Duplin, Perquimans and Carteret, on or near the coast.
“In my opinion, it’s a lot more wide-spread than they would have you believe,” McLean said.
One problem is that CDC-recommended tests for Lyme disease are known to return false negatives, especially during the first two weeks after exposure, according to DHHS.
That’s what happened to McLean. He developed the classic early symptoms, including the bull’s-eye rash around the tick bite. But the test came back negative, and his doctor told him that the disease couldn’t be contracted in the state.
“I had blind faith in my doctor,” he said. “I had thrown the Lyme disease thing out the window.”
Nationwide, 30,000 cases of Lyme disease are reported to the CDC each year. But because many people aren’t tested, return false negative tests, or are not treated for Lyme disease at all, the CDC estimated in 2014 that some 300,000 cases actually occur each year.
For that reason, the 266 reported cases in North Carolina in 2016 are likely just a fraction of the total number, Herman-Giddens said.
More awareness is still needed, Herman-Gidden said; many doctors still don’t diagnose Lyme disease in North Carolina. Still, she said, North Carolina has become better about addressing the illness.
“Now North Carolina is really owning up to it, doing a great job,” she said. “There’s no denial anymore, and they’re trying to get the word out.”
Sam Killenberg: 919-829-4802
How to avoid Lyme disease and other tick-borne illnesses
Lyme disease is caused by bacteria spread by infected deer ticks, also known as black-legged ticks. Deer ticks are small and dark-colored and typically inhabit areas with tall grass, bushes, deep woods and/or fallen leaves. Not all deer ticks carry the Lyme disease bacteria.
To avoid being bitten by a tick:
- Use insect repellents that contain DEET on skin, and treat clothing with permethrin
- When going to areas where ticks like to live, wear light-colored clothing so ticks will be easier to see
- Wear a long-sleeved shirt tucked into long pants, and tuck long pants into socks
- When hiking, walk on paths
- Check thoroughly for ticks after spending time in tick habitats. Ticks typically attach to warm, moist places on the body.
To remove a tick:
- Use tweezers and grasp the tick close to your skin
- Pull the tick away from your body slowly and steadily
- Once the tick is removed, disinfect the area
For more information on tick-borne illnesses, go to www.wakegov.com/humanservices/publichealth. Select Health Information > Communicable Diseases & Pests > Ticks from the left menu.