Tick-borne Lyme disease has spread across West Virginia over the past six years with cases reported in 52 of the state’s 55 counties, according to state health officials.
Most cases are reported in the northern and eastern panhandles probably because of their proximity to the high-incidence states of Maryland, Pennsylvania, and Virginia, the Department of Health and Human Resources said.
In an advisory Monday to health care providers, Health Commissioner Dr. Rahul Gupta wrote that the increase could be from increased reporting or from more ticks infected with the bacteria. Most cases appear between May and September, but ticks have become more active in winter months, he said.
According to the department, 580 cases have been reported so far this year, up from 97 statewide in 2012.
“Based on the change, West Virginia is considered a high incidence Lyme disease state,” Gupta wrote.
Patients treated early with antibiotics usually recover quickly. He recommended a two-step blood test to confirm evidence of antibodies against the Lyme disease bacteria.
Symptoms often include a circular rash around a tick bite and fever, headaches and fatigue, according to the U.S. Centers for Disease Control. If left untreated, the infection can spread to joints, the heart and the nervous system.
The CDC says there were more than 36,000 probable cases in the U.S. last year, with 26,203 confirmed.
In June of 2007, Victoria Snyder, then age-nine, attended a week-long church camp. During the week she began to feel sick – muscle aches, lethargy, headaches. A doctor at the camp thought it might be the flu, but she didn’t get better. So after camp, her mother, Christine, took her to see a pediatrician.
“The pediatrician found a bullseye ring on her stomach,” said Christine. “I felt a lot of relief when they put her on antibiotics because with Lyme disease, we knew what we were dealing with.”
In 2007, there were only 84 confirmed cases of Lyme Disease in West Virginia – most of which were in the Snyder’s county, Berkeley. Seven years later, that number almost doubled to 136. The next year, 2015, it doubled again.
“The number of cases are increasing,” said West Virginia University pediatric infectious disease specialist Kathy Moffett. “It’s not that we haven’t diagnosed it before, it’s that it hasn’t been here before.”
Moffett said experts think that the mountains in eastern West Virginia have long been a barrier against the ticks (West Virginia’s border states of Maryland, Pennsylvania and Virginia all have high levels of Lyme).
Others disagree, saying Lyme has always been in West Virginia, it just wasn’t well diagnosed.
“I can tell you I don’t think there’s a great wall of West Virginia and all these ticks stop at these borders. It’s rampant in Virginia, it’s rampant in Pennsylvania, it’s rampant here,” said Doctor Erika Pallie, a West Virginia-based physician who used to work for WVU.
“The presumption is that for some reason West Virginia still doesn’t have Lyme disease,” she said. “I would propose this is a self-fulling fallacy. Doctors are told there’s no Lyme disease here, therefore they refuse to test people for it, therefore they don’t find it, therefore they don’t report it.”
Nationwide, the Centers for Disease Control and Prevention registers about 300,000 new cases of Lyme disease each year. More than 96 percent of those cases are being reported in 14 states. (West Virginia does not yet officially make that list, although if trends continue, it might in the coming years.)
The Lyme Controversy
Doctors Pallie and Moffett have both seen and treated Lyme in West Virginia. But they view the disease in very different ways.
Moffett adheres to the Infectious Disease Society of America’s recommended guidelines for Lyme, which basically state that Lyme is hard to get and easy to treat.
Pallie, who has personally had Lyme, believes that the IDSA’s definition of Lyme is too narrow. Rather, she follows guidelines from the International Lyme and Associated Diseases Society, which state there are more than 100 strains of the bacteria that cause Lyme in the United States. Therefore, a cocktail of antibiotics (rather than a single round of one) may be needed to treat Lyme.
The International Lyme Society’s research has also indicated that the official, primary, test used for the disease is only about 65 percent sensitive. So when possible, Pallie would order a different one. (Other, more sensitive tests are generally not covered by insurance as preliminary screening.)
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A classic bullseye rash, which often indicates Lyme disease.
But Moffett defends the IDSA’s guidelines saying, “[T]hese [guidelines] have been studied very closely and carefully to look at the science behind how accurate these tests are – are they valid and the science says they are valid. There are a minority of people who feel that their disease may not be accurately diagnosed who are looking for answers of symptoms that may have nothing to do with Lyme.”
For several years, those minority of patients flooded Pallie’s clinic in Morgantown.
“When you come down to it, I believe patients have the right to be informed of the risks of their alternative choices,” said Pallie. She said she told her patients “[L]ook this is the deal. This is what you have, this is the infectious disease standard of care and the ILADS standard of care, and these are the risks of this treatment.”
Pallie said eventually her supervisors at WVU asked her to stop diagnosing and treating Lyme or sending out any more specialty tests. Instead, Pallie says, she was instructed to send patients she suspected had Lyme to the infectious disease specialists at WVU.
Pallie says she understands that decision since she was hired as a family doctor, not a Lyme disease specialist. Nevertheless, she resigned from her position at WVU because she thought it was unethical not to treat patients she really did think have Lyme.
Still Sick? It Must Not Be Lyme
For one thing, many of the patients Pallie saw had stories like Victoria Snyder’s. Back in 2007, after her first round of antibiotics, Victoria didn’t get better. By November of that year, Christine took Victoria to an infectious disease specialist in Winchester, Virginia, who recommended that she be admitted to hospital and given six weeks of intravenous antibiotics.
“When she finished the IV antibiotics, she definitely had less of the cloudy thinking – we were just hoping that her energy would catch up,” said Christine.
It never did. Victoria is now 17 and a senior in high school. She tests negative for the bacteria that causes Lyme, but most days, it is all she can do to get out of bed and get through the school day.
Christine said the doctors she took Victoria to said “she was cured of Lyme disease and it was official. They weren’t willing to look into what other issues might be causing the fatigue.”
Christine also said her insurance refused to continue paying for treatments since Victoria no longer tested positive for Lyme. But she doesn’t see how the current health issues Victoria is having could not be related to Lyme. ”Victoria was a normal, high energy, 9-year-old kid. There was a change in her and it has never been the same since she got sick,” she said.
According to the Infectious Disease Society, there is no such thing as chronic Lyme disease. WVU’s Moffett said continuing to treat for Lyme when there’s no evidence of the disease may be masking the true problem. Also, she said, prescribing months of antibiotics may do more harm than good. But for patients like Victoria and doctors like Pallie, the question remains: If they are cured, why are they still sick?
Despite their differences, both Pallie and Moffett agree that Lyme disease is being diagnosed at a higher rate in West Virginia. They also both say that’s it’s preventable and that the best way to tackle Lyme disease is to take steps (such as wearing pants, checking for ticks during the warm months, and wearing bug spray) that keep that the bite from happening in the first place.
Appalachia Health News is a project of West Virginia Public Broadcasting, with support from the Benedum Foundation.
Four additional West Virginia counties have been declared endemic for Lyme disease, bringing the total to 11.
The Charleston Gazette-Mail reports that Kanawha, Marshall, Roane and Wetzel counties were declared endemic for the tick-borne disease as of Aug. 15. They join Berkeley, Hampshire, Hancock, Jefferson, Mineral, Morgan and Wood counties on the list.
Dr. Rahul Gupta, the state health commissioner, says a county is considered endemic for Lyme disease if it has at least two confirmed cases in patients who had not traveled recently and could only have been bitten by a tick within that county.
The state Bureau for Public Health says there have been 149 cases of Lyme disease in West Virginia this year — nearly double the 77 reported in the same time frame in 2014.
In 2007, 27,444 cases of Lyme Disease were reported to the Center for Disease Control. That’s 3 people every hour, every day. And the CDC believes only 10-12 percent of Lyme Disease cases are actually being reported to them. The CDC now estimates 300,000 people per year are being infected with this illness. Many suffer with chronic symptoms for years before they discover the problem, if they discover the problem.
A young man, John Donnally, recently biked through West Virginia on his path across the country to bring attention to Lyme Disease and other tick borne illnesses. He hopes the campaign encourages more open discussion and inspires more research so that people with Lyme disease and other tick borne illnesses can have a better chance at restoring their health.
Who is John Donnally?
John Donnally is a 24-year-old Lyme sufferer and cyclist, who is riding 4000 miles on a cross-country bike tour.
“I came up with this idea in January. And it’s because I had a very bad case of Lyme disease growing up and like most people, didn’t know a lot about it until I got sick.”
Donnally was eventually diagnosed. Then later, both his parents, his younger sister and his aunt were also diagnosed. He says once he was finally diagnosed he was treated with the conventional three-week heavy doses of antibiotics.
“I received a few weeks of intravenous antibiotics. So I received a pickline that went through my bicep and into my heart and I got a lot better.”
But then he got sick again in college with new, bizarre symptoms like lock-jaw, tingling and numbness, ringing in his ears, neurological problems, degenerative arthritis, and a lot of other things that a 21 year old shouldn’t have been experiencing.
So it was back to the races. It took another round of specialists scratching their heads, his symptoms continuing to progress, and more time before he was again diagnosed. Today Donnally says he’s at 85-90 percent, healthy enough to ride across the country, and he says he feels lucky. That’s why he approached an advocacy group, the Tick Born Disease Alliance in New York City, with the cycling project idea that was wrapped into a national campaign dubbed Bite Back for a Cure.
“This is an awareness-building campaign, it’s a fund raising campaign, but it’s also a listening and story-sharing ride. I’m meeting and speaking with patients as I make my way across the country. We’re doing filmed interviews and sharing all that stuff on YouTube and Facebook.”
Donnally is now headed toward Philadelphia. His ride started in late September in San Francisco, and hopes to end up in New York City by December 1. You can follow Donnally as he embarks on the last leg of his journey on Facebook, or on Twitter @JohnDonnally.
Controversy
Much controversy surrounds Lyme Disease for a myriad of reasons. As a partial result, the disease remains draped in ambiguity and mystery, and precious little is discussed on the issue above a whisper. But Donnally is working to change that.
Controversy 1: The Test
Donnally explains that more effective diagnostic methods are needed.
“Patients may show up false negative for a while and after going misdiagnosed with other things they come back with a positive Lyme Disease diagnosis.”
Controversy 2 (3, 4, 5?): Treatment
Donnally says that there are basically two schools of thought that rule the day. One says about three weeks of heavy antibiotics will do the trick. That might be true, if caught early enough or if it just happens to work. But the Center for Disease Control reports that in at least 20 percent of the cases, symptoms return after a month’s treatment.
The second school of thought says in lieu of a cure, long-term, continuous courses of antibiotics are the only recourse many have. Of course, there are major problems with that course of action such as side effects, fears within the communities about over use of antibiotics, and of course payment.
Controversy 6: Payment
“For many patients, insurance will not cover treatment that exceeds one month of oral antibiotics. So for people who cannot afford long-term treatment or don’t have the resources to find other means of getting better? This is an issue of massive social injustice,” Donnally says.
Donnally says if you have the wherewithal you probably can get treatment, but it’ll be out-of-pocket expenses. People spend hundreds of thousands of dollars just trying to get better.
"So not only does it take a toll on your health," Donnally says, "people go bankrupt trying to get treatment.”
Controversy 7 (8, 9, 10…): Co-infection
As if it weren’t already complicated enough, we aren’t just talking about a single nasty bacteria. Lyme is just the town on the map where one particular pervasive bacteria is infamous for infecting the majority of the people. The name of the particular bacteria is Borrelia burgdorferi. But other diseases are also transmitted by ticks. Those diseases are caused by infections from a variety of pathogens, including bacteria, viruses and protozoa. One tick bite may transmit Lyme disease as well as/or over a dozen additional tick-borne diseases.
“There are a few known co-infections, and there’s a dozen known pathogens that ticks can carry. If you were to see your regular physician and maybe he does know to test you for Lyme Disease, you may not get tested for all these other co-infections.”
"Treating these diseases in their latent, complicated forms has kind of become an art form for doctors. There’s just not enough known about these other pathogens. And that’s why I’m doing this ride, to bring awareness to all tick borne diseases and to generate funding for new research,” Donnally said.
More research Donnally says, which might lead to more accurate diagnostics, better treatment, and a perhaps better insight into just why it is that these pathogens are so pervasive in growing areas of the country.
