In 1975, an outbreak of juvenile arthritis in Lyme, Conn., led to intensive research that isolated a bacterial infection now called Lyme disease. Since then, the disease has been spreading along the eastern seaboard and the upper Midwest. Most West Virginia counties have now reported cases, with the majority appearing in the Eastern Panhandle. In Jefferson County, ask a few people in a crowd if they know who has had Lyme disease and the talk can quickly spiral toward words like “outbreak” or “epidemic.” Suddenly a lot of moms in Jefferson are fearful of allowing their kids to have idle time in the woods or fields.
A three-part narrative has accompanied the spread of Lyme disease. The first storyline is that the arrival of Lyme disease means an epidemic of the illness—after all, seemingly everyone in Jefferson County knows of someone who has had it.
The second storyline is that doctors are slow to test for Lyme disease or fail to diagnose it altogether. This may be true, or at least was true until recently. “It’s still a relatively new disease, especially here,” said Mark Cucuzzella, M.D., who practices at Harpers Ferry Family Medicine and has diagnosed and treated many cases of Lyme.
The third storyline is that delayed diagnoses have resulted in a persistent, chronic Lyme disease, which survives in patients’ bodies in an active state despite long-term treatment. This claim is disputed by most doctors and the Infectious Diseases Society of America, an association that conducts research and creates guidelines for care. 
The pesky Borrelia burgdorferi bacteria, which causes the illness, has pitted patients and some doctors against a medical establishment they say will not acknowledge the disease’s impacts.
Failure To Diagnose
Marcus Simmons is a man accustomed to working with his hands. He has always been known as a guy who could weld, do craft carpentry and stone masonry, build and restore outbuildings, and fix just about anything. Known to many residents along the Jefferson County stretch of the Potomac River as Cap, Simmons is a self-described river rat—he loves to be on the river and was the guy neighbors turned to for help in securing their boats and docks when the river was expected to rise to flood levels.
No stranger to hard work, he was used to occasional aches and pains. So when, several years ago, he developed arthritis almost overnight, along with debilitating back and muscle pain, he guessed that his new aches were not garden-variety strains. His joints, especially his knees, gave him nearly continuous pain. He had recurring bouts with fever and flu-like symptoms. He knew something was wrong.
“It got to where I could hardly get out of bed in the morning,” said Simmons. “But staying in bed didn’t feel much better.”
After several doctors failed to diagnose the problem, he took matters into his own hands and began to research his symptoms. His suspicion focused on Lyme disease, at the time still relatively uncommon in the Eastern Panhandle. Finally, he found a doctor who had treated dozens of patients with advanced-stage Lyme disease. She prescribed a prolonged regimen of antibiotics—a treatment that some doctors would call dangerous. Today, although much improved, Simmons is one of about 20 percent of Lyme patients who experience bouts with arthritis. He has become an almost daily swimmer—which he credits for alleviating the pain and inflammation. He also continues to experience intestinal problems, which he suspects might be linked to the antibiotics, but also says he thinks the disease is still present.
The diagnosis story was similar for Lorraine Sauve-Budd, also of Shepherdstown. She exhibited symptoms for about five years before she was finally diagnosed. Her initial symptoms were migraine headaches. Then came backaches. While being treated by a chiropractor for those, she awoke to find her wrist so swollen and painful she thought it was broken. Then her ankle swelled to the point that she could hardly walk.
Because she was an avid gardener and worked on her feet all day, friends and family chided her that these were the aches and pains of turning 40 years of age. But her symptoms mounted, and together they presented a textbook picture of Lyme disease. In addition to the aches and swollen joints, there was sleeplessness and fatigue. Her vision deteriorated, the headaches worsened, she was bumping into things; her hearing suffered. Over the course of a few years, she saw 15 doctors and 2 chiropractors before being diagnosed.
“Endocrinologists, orthopedics, neurologists . . . I’ve been to everybody,” she said. “I have had MRIs, X-rays, nerve conduction studies . . . I’ve been to everyone.” Despite all the testing that was ordered, none of the doctors ordered a Lyme screening. “It was never even talked about,” said Sauve-Budd.
An endocrinologist did find a problem with thyroid function, which she attributed to a former illness, perhaps from the “mono” she had when in high school. After doing more research, she asked the endocrinologists to test her for Lyme disease. Although the screening came back negative, she did test positive for a bacteria called Bartonella—a tick-borne pathogen that some doctors consider a tell-tale co-infection that determines the presence of Lyme.
The doctor prescribed oral antibiotics for a year and, later, an intravenous antibiotic for about a month. Under the traditional standards of care, long-term treatment with antibiotics is considered unnecessary at best, dangerous at worst. But a number of doctors who specialize in treating Lyme claim that this unusual step is the only way to truly knock out the bacteria.
“Fifteen doctors later, everything seems to be okay except my back and my ankle,” said Sauve-Budd, adding that sleeplessness—a classic Lyme symptom—remains her biggest problem. She’s exhausted, yet can’t get a good night’s sleep. The only way to get through the day is the prospect of a nap after work.
“About every six weeks I bottom out for about a week,” she said. The symptoms recur, compounded by the combination of fatigue and sleeplessness. “I don’t believe it ever goes away completely. I don’t believe you ever get rid of it.”
Shepherdstown resident Mark Muse’s battle is more typical of most Lyme patients, although like Simmons and Suave-Budd his diagnosis was long delayed. He works indoors at the Harpers Ferry Design Center, but his leisure time is spent primarily outdoors. When he fell into a prolonged, flu-like illness in 2003, the typically healthy Shepherdstown resident was baffled. He was even more baffled by the response he received from doctors when he requested a Lyme screening—no doctor wanted to test him for Lyme disease.
“Given the rural character of this area, I was surprised at their reluctance,” said Muse. As is often the case with Lyme, his symptoms would abate, then recur. In February 2006, the disease struck hard. The arthritis worsened. He was so fatigued he found it hard to work and could not get a good night’s sleep. He couldn’t concentrate.
Muse found a new doctor who diagnosed him with Lyme disease. He was put on a 14-day treatment of antibiotics, the standard prescription for the illness. With his symptoms still presenting, he was prescribed a second 14-day course, a common follow-up treatment. Since then, like nearly all Lyme disease patients treated with simple antibiotics, he has been mostly symptom free, with the exception of occasional arthritis.
“At this point, I’m not sure if the arthritis is a sign of aging or of Lyme,” said Muse, adding that it could also be a side effect of other medicines he takes.
So what’s the difference between Muse’s case and the others?
Chronic Lyme or Unscrupulous Docs?
“There is no acceptable scientific literature that supports treating Lyme disease for a long time,” said Roberta DeBiasi, M.D., a Shepherdstown resident and associate professor of pediatrics in the Division of Pediatric Infectious Diseases at George Washington University’s Children’s National Medical Center/Children’s Research Institute. She doesn’t doubt the pain or symptoms, but, like most other doctors, discounts the existence of a persistent Lyme infection.
The vast majority of kids and adults, she says, are cured after a brief treatment with antibiotics. Patients who have the classic bull’s-eye rash are treated with 14 to 21 days of antibiotics. Patients who have second stage, or early disseminated, symptoms are put on a 28-day regimen. These are the patients who show smaller rashes, but not on the bite site. They have aches, pains, flu-like symptoms, and minor arthritis. Perhaps they have headaches, too. This means the infection is not just in the skin, but in your bloodstream
“In this stage, most people are 90 percent better after 28 days, but it will take a little time for the swelling to go down,” said DeBiasi. “If they are not better, we wait two months, then prescribe another 28 day regimen.”
Very rarely, she said, if a patient does not improve after that, an  intravenous treatment would be prescribed for 28 days.
“Never years of therapy,” she said. “And we’re a referral center.” This means they see the worst cases in the Washington, D.C. region. Patients who come to them are already in the third phase. They could have true meningitis, in which the disease has invaded the spinal fluid, or an inflamed heart, or advanced unmistakable arthritis.
“I’ve seen kids come in with their knees as big as a basketball,” she said. “And I’ve never personally had anyone who needed more than the two courses of oral therapy.”
So why are some doctors treating patients for chronic Lyme disease? It’s good for business, says DeBiasi.
People with chronic pain want answers. They turn to doctors to tell them what is causing the pain. They hope the doctor can put a name to it and treat the pain. Says Debiasi, “Some unscrupulous doctors will say: Aha! Your back pain is Lyme disease. You have antibodies. So I’m going to treat you for five years, and you’re going to come see me every six months.”
But what about those antibodies? The antibodies stay in your system for a long time. “Most people who contract Lyme disease never become symptomatic,” said DeBiasi. “They might have a day of feeling under the weather, but then your body deals with it. If you went around measuring antibodies, a lot of people would have antibodies for Lyme disease but never have symptoms.”
The same is true for former Lyme disease patients. “They have antibodies, but not necessarily Lyme disease,” said Harpers Ferry Family Medicine’s Cucuzzella (who is married to DeBiasi).
According to the American Lyme Disease Foundation, the number of post-Lyme patients suffering from recurring arthritis is about equal to the number of adults suffering arthritis in the population at large.  “There is a subset of people who have physical symptoms that can’t be explained by any medical professionals,” said DeBiasi.  “They will have a variety of physical ailments that can’t be explained. Backaches . . . headaches . . . fatigue that can’t be explained.”
Once these symptoms are given a name, like chronic Lyme disease, word of it spreads through the internet. When enough people share some of the symptoms, “That’s when unscrupulous doctors hop on the bandwagon—they have a great patient population.”
DeBiasi says the Infectious Disease Society has acknowledged the lingering effects of Lyme with the term post-Lyme syndrome. As the term suggests, they believe the patient is cured but that the most debilitating effects might be present for some time.
An Epidemic or a Small County
Between 2001 and 2005, the latest period for which data are available, there were only 39 cases of Lyme reported in Jefferson County and a total of 131 reported in the Eastern Panhandle. The Eastern Panhandle does account for about 75 percent of all West Virginia cases, according to the West Virginia Division of Surveillance and Disease Control/Infectious Disease. Allowing for some unreported cases and cases of West Virginia residents who were diagnosed in other states, that still does not appear to be epidemic levels. The number appears to be rising, but so is the human population in the county. If another 20 cases were diagnosed in 2006 (a number pulled from the air as the actual figure is not yet available), that would amount to a total of 59 cases.
Is the Lyme disease scare a really a case of public fear getting ahead of the facts?
It almost goes without saying that a disease with Lyme’s potential impacts is one to be taken seriously. If left untreated after symptoms develop, it can have terrible, even deadly, consequences. All of the patients interviewed for this story agreed that early detection and treatment are the keys to successful recovery.
With more doctors learning about the infection and more people learning more about the combination of symptoms that identify the illness early, Lyme disease in Jefferson appears to be more a cause for concern than alarm.
“The health benefits of spending time in the outdoors far outweigh the risks of Lyme disease,” said Debiasi.

Staying Clear of Lyme Disease
In the eastern United States, the deer tick is the only tick that carries the bacteria. The percentage of adult deer ticks carrying Lyme is relatively small. South of Maryland, the American Lyme Disease Foundation estimates that between 5 and 10 percent of adult deer ticks are carriers. They acquire the bacteria in their larval and early juvenile stages by feeding on white-footed mice. They grow up to feed on larger mammals, especially white-tailed deer. After near extinction in the East a century ago, there are more white-tailed deer now than ever in history, say wildlife biologists.
To be infected by the deer tick, it must stay attached to your skin for 36 to 48 hours, according to ADLF. Checking yourself or your kids for ticks each day helps prevent the disease by ensuring that no tick stays on long enough to transmit an infection.
Prevention
Reduce the tick population around your home:
Keep lawns mowed and trimmed.
Clear brush and tall grass around houses and walls.
Stack woodpiles neatly and in a dry location, preferably off the ground.
 While outdoors:
Wear closed toe shoes.
Scan clothes and exposed skin frequently for ticks.
Stay on cleared, well-traveled trails.
Use insect repellent containing DEET on clothes, especially if you intend to go off-trail.
Avoid sitting directly on the ground or on stone walls.
Keep long hair tied back, especially when gardening.
Do a final, full-body tick check at the end of the day, focusing on the protected or creased areas of the body: back of the knee, groin, navel, armpit, ears, or nape of the neck.
 Pet Detection:
Check ears, neck, and legs of pets. Ticks like to be in tight, warm, creased places.
Removing a Tick
Using a pair of pointed tweezers, grasp the tick by the head right where it enters the skin. Pull firmly and steadily outward. Place the tick in alcohol to kill it. Clean the bite wound with disinfectant. DO NOT grasp the tick by the body or twist the tick out. Do not apply petroleum jelly or a hot match to get it out.
An alternate removal technique is to coat a cotton swab with liquid soap. Cover the tick with the soap-soaked cotton ball and swab it for 15–20 seconds. The tick will come out on its own and be stuck to the cotton ball when you lift it away.
For removing ticks from pets, follow the same guidelines as for humans.
Detection & Symptoms
You’ve been bitten; you removed the tick, now what?
Monitor the site of the bite for a rash for up to 30 days after the bite. Usually (but not always) the rash radiates from the site of the bite. The rash appears either as a solid red expanding rash or blotch, or as a central spot surrounded by clear skin that is in turn ringed by an expanding red rash (looks like a bull’s-eye).
The rash appears an average of one to two weeks (generally 3 to 30 days) after disease transmission and has an average diameter of 5 to 6 inches (ranging from 2 to 24 inches).It persists for about 3 to 5 weeks and may or may not be warm to the touch. It is usually not painful or itchy.
If a rash does occur, consult a doctor immediately.
Early Stage Symptoms
Flu-like feelings of headache, stiff neck, fever, muscle aches, and fatigue.
In pets, the symptoms are lethargy, poor appetite or loss of appetite.
Treatment
Early treatment of Lyme Disease(within the first several weeks after initial infection) is straightforward and almost always results in a full cure. Doxycycline, Amoxicillin and Ceftin are the three oral antibiotics most often prescribed for treatment of all but a few symptoms of Lyme disease.
Compiled by Laura Becker