NEWS: “Lyme disease likely under-reported in Kentucky”
27th July 2012
The Louisville Courier-Journal examines the issue of Lyme disease in their state.
From the Louisville Courier-Journal, July 26, 2012
Lyme disease likely under-reported in Kentucky
Rarity of reports in Kentucky, doctors’ guidelines can frustrate patients
by Keiara Carr
Two years ago, Mike Gatton played softball, took care of his 16-acre farm outside Jeffersontown and still had plenty of energy to preach a sermon every Sunday at Hurstbourne Christian Church, where he is pastor.
Gatton, 64, had rarely been sick. “I never took a Tylenol a day in my life,” he said.
But a tick the size of a tiny freckle changed all that — leaving him with Lyme disease and joint pain that grew so crippling he could no longer stand at the pulpit.
Lyme disease is contracted by a bite from the black-legged deer tick — a species that’s prevalent in northeastern states but not commonly seen in Kentucky.
Still, while the incidence of Lyme disease is growing nationally — and the University of Kentucky has confirmed that deer ticks have turned up in the state this year — medical experts agree that Kentucky doctors rarely diagnose it.
Louisville Mike Gatton's battle with Lyme disease: Two years ago, Mike Gatton played softball, took care of his 16-acre farm outside Jeffersontown and still had plenty of energy to preach a sermon every Sunday at Hurstbourne Christian Church, where he serves as pastor.
Mike Gatton says his Louisville doctor assumed his Lyme disease was some other affliction. / Alton Strupp/The C-J
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Two years ago, Mike Gatton played softball, took care of his 16-acre farm outside Jeffersontown and still had plenty of energy to preach a sermon every Sunday at Hurstbourne Christian Church, where he is pastor.
Gatton, 64, had rarely been sick. “I never took a Tylenol a day in my life,” he said.
But a tick the size of a tiny freckle changed all that — leaving him with Lyme disease and joint pain that grew so crippling he could no longer stand at the pulpit.
Lyme disease is contracted by a bite from the black-legged deer tick — a species that’s prevalent in northeastern states but not commonly seen in Kentucky.
Still, while the incidence of Lyme disease is growing nationally — and the University of Kentucky has confirmed that deer ticks have turned up in the state this year — medical experts agree that Kentucky doctors rarely diagnose it.
That’s largely because current medical guidelines say the disease is so rare in Kentucky that doctors should look for alternative causes for symptoms that might suggest Lyme disease.
Just five cases were reported each of the past two years in Kentucky, and there was just one case in 2009. Indiana had more than 60 confirmed cases of Lyme disease in 2009 and 2010. Clark and Floyd counties have had a total of three confirmed cases this year.
But it’s likely that Kentucky’s Lyme disease numbers are under-reported, said Mike Schardein, a health policy specialist for the state’s Department for Public Health, who believes a number of cases were not confirmed because doctors didn’t administer the required blood test because they assumed it wasn’t Lyme.
Gatton, who has joined a support group of Louisville and Southern Indiana residents with the disease, went to a clinic near Indianapolis to find a doctor to diagnose and treat his illness.
He said his Louisville doctor assumed his symptoms were caused by something else. “He said, ‘Lyme disease does not exist in Kentucky,’ ” Gatton recalled.
Tondia Burrows, co-founder of the support group, said she hopes that stories like Gatton’s will make doctors aware of the threat in Kentucky. “We are here. So why can’t the deer tick be here, too?” she said
The Greater Louisville Medical Society is developing a policy on how physicians should handle possible Lyme disease patients because of questions about their treatment, spokeswoman Ellen Hale said.
“It’s been a gray area for some time,” Hale said. “Information from the state level says that Lyme disease is not present in Kentucky.”
Difficult to diagnose
Those infected with Lyme disease often develop a fever, headache and fatigue, and sometimes a rash that looks like a bull’s eye centered on the tick bite.
Most people recover with large doses of antibiotics, although some symptoms can persist even after treatment. If left untreated, the infection can be painful and debilitating, causing arthritis or spreading to the heart and nervous system. It’s rarely life-threatening.
Guidelines set out by the Infectious Disease Society of America in 2006 to help doctors decide if a patient is eligible for treatment say the patient should have received the tick bite in an “endemic area” — one where deer ticks are prevalent.
The guidelines also say the patient should have found a tick engorged with blood attached to the skin for at least 36 hours and developed a bull’s-eye rash.
Dr. Paul Schulz, a Norton infectious disease specialist in Louisville, said he follows the guidelines to decide if a patient is eligible for Lyme disease treatment. “The issue is that this is not a big area for Lyme so most just don’t meet the criteria,” he said.
Paul Mead, a consulting physician for the U.S. Centers for Disease Control and Prevention, said it’s essential for doctors to consider the local frequency of a disease before making a diagnosis.
“For example,’ he said in an email, “a physician in Africa evaluating a child for fever should have malaria at the top of his list; a physician in Kentucky should not.”
Schulz said he struggles with patients who don’t understand that a tick bite does not equate to a Lyme diagnosis. “For the 10 I’ve treated, I’ve seen 10 times as many people who think they have Lyme” but don’t, Schulz said.
According to the CDC, the lone star tick, a more common species in Southeastern states, can cause a similar rash called Southern tick-associated rash illness, or STARI. The bite does not lead to the arthritic and neurological symptoms associated with Lyme.
Doctors say they don’t want to treat patients for Lyme disease if they might not have it because the large doses of antibiotics could harm patients who don’t need them.
But UK entomologist Lee Townsend said this year’s unusually warm weather spurred an early emergence of all ticks, including the deer tick. In Kentucky, he said, most deer ticks have been found in the eastern part of the state, primarily in the Daniel Boone National Forest on the deer trails.
A second opinion
Gatton was mowing his lawn when he was bit two years ago. After showering, he noticed a tiny raised spot on his thigh. He thought it was a freckle until he began to lift the tick off his skin.
A rash had covered the top part of his leg by the time he got to a local infectious disease specialist two days later.
“They tested me for West Nile, multiple sclerosis, Lou Gehrig disease. ... We went through eight diseases pretty fast,” Gatton said.
While waiting for a diagnosis, Gatton saw his health decline.“I was feeling more and more fatigued. I was having severe headaches. I was really concerned,” Gatton said. “My knees hurt so bad that I went to a orthopedic surgeon. I was on crutches for two weeks.”
A year ago, Gatton found another tick on the back of his leg. This time, he put the tick in a vial. With the tick in hand and physical reactions that were identical to the first bite, the physician still dismissed Lyme.
Gatton said his doctor declined to look at the tick, remaining firm that Lyme disease does not exist in Kentucky.
Gatton’s joint pain became so severe that he couldn’t stand at the pulpit for long periods and had trouble remembering names of people in the congregation. “It’s scary stuff. I would try to do the children’s sermon and forget what I was preaching on.”
Gatton now travels to Zionsville, Ind., to be treated by Dr. Kimberly Lentz at New Horizons Integrative Medicine, a clinic that specializes in Lyme treatment.
Lentz said she began studying Lyme more closely when her husband, Dan Lentz, was misdiagnosed.
“We went to all the doctors in Indianapolis and then to the Cleveland Clinic, they all said, ‘Yep, you’re really sick but it’s not Lyme,’ ” Dr. Lentz said. “So I researched the symptoms and treated him myself.”
She went through a training program given by the International Lyme and Associated Disease Society to become what the organization calls “a Lyme-literate doctor.”
In the two years since she opened her practice, she said, she has seen more than 500 patients about Lyme treatments.
She diagnosed Gatton with Lyme disease during his first appointment and put him on a treatment of 35 oral antibiotics and probiotics a day. “He was really considered a classic case,” Lentz said.
When his body rejected the pills, Lentz tried a more aggressive strategy. Gatton now takes antibiotics intravenously to get the treatment directly into his bloodstream. He takes herbal supplements to take out toxins and replace nutrients.
“I feel more energetic,” Gatton said.
A helping hand
The more than 30 members of the Kentuckiana Lyme Support Group say they want to raise awareness of the disease, and they also provide information for people who believe they may have been misdiagnosed.
Burrows, the group’s co-founder, contracted Lyme while living in Maryland. When she moved to Louisville with her husband, she had already given up her career as a nurse because of spinal pain and a foggy memory.
“It was devastating,” Burrows said. “You go from being a perfectly healthy woman to being house-bound.”
Burrows met co-founder Pam Hensley in an online Lyme support group and the two started looking for a place to meet. Gatton offered his church.
Gatton remains in high spirits. It was a walk with his dog that changed his attitude.
“I thought to myself, ‘I don’t know what tomorrow is going to bring and I’m frustrated, but I have this day,’ ” he said. “That’s the way I’ve been living through this thing, and that’s what keeps me going
