|By Jim Hook, Public Opinion, Chambersburg, Pa.|
|McClatchy-Tribune Information Services|
The diagnosis is politically charged. Researchers debate its existence. Treatment is controversial.
"It is very real and is affecting a lot of people in the area," said Negley, after a four-month treatment in the
Lyme disease is the most commonly reported illness spread by animals to humans in America, according to the
Lyme can develop into something way beyond a rash from a tick bite.
Negely isn't sure how he got the disease. He hunted. He worked in his backyard and on his small farm. He mowed grass along the township roads.
What's more important, he said, is that little is being done to research or control the disease.
Last year a CDC study estimated that 300,000 Americans are infected annually, 10 times more than has been reported.
"Lyme disease should be recognized as a virulent epidemic that is at least six times more common than HIV/AIDS," according to
June and July is the prime season for Lyme infections.
--You're only twice as likely to be injured in a vehicle crash as to contract Lyme in
--You're seven times more likely to contract Lyme than West Nile.
The state has spent nothing on Lyme disease surveillance and education, but more than
That will change. Gov.
Based on statewide data, 50 people in
"This is one of the hot spots for Lyme disease in south-central
A majority of the patients that Stonsifer sees for Lyme disease "are reaching out because they've been sick for so long."
He said about half his patient load is related to Lyme disease.
About 10 to 20 percent of patients treated initially for Lyme disease have symptoms that linger, sometimes for more than six months, according to the CDC. The CDC does not have an answer for this long-term effect, or "Post-treatment Lyme Disease Syndrome."
The symptoms include fatigue, pain, or joint and muscle aches. Negley has had them all, and then some.
Negley was not treated initially for Lyme disease.
"Once you have it you never get rid of it," he said. "If you catch it early you can treat it with oral antibiotics. There's no cure. You try to get it to a dormant state."
Negley's struggle with what was later diagnosed as Lyme began in 2011 with unexplained chest pains and high blood pressure. They would come and go. He started having problems with his left knee, then his right knee. The orthopedic surgeon told Negley that he could not operate on both torn meniscuses and that Negley needed a good one leg while the other healed from surgery. Negley was on cortisone for a month, and both knees cleared up. Surgery was canceled.
"There's no way to put things together without a doctor being up on the symptoms of Lyme disease," Negley said. "Lyme is known as the 'great imitator.'"
Negley, 58, then developed pain in his left and right shoulders. The diagnosis was arthritis. Again he was referred to an orthopedic surgeon and got an MRI of one shoulder.
"I was starting to have more issues," he said. "It got to the point I couldn't do anything physically. I couldn't raise my arms without excruciating pain, primarily in the joints.
"It was tough. It really was. I was falling to the point last year where I thought: I wasn't going to make it and there's nothing you can do."
Acquaintances talked to him about Lyme disease and told him about Stonsifer. Negley quickly got an appointment. Not surprisingly the CDC-approved test came back negative, Negley said. The test has a 50 percent accuracy rate, he said. Another panel of tests by IGeniX of Palo Alto confirmed Lyme. Stonsifer prescribed a regimen of antibiotics and Negley's condition improved -- for a while.
Acquaintances referred him to a place near
"I was blessed that the medicine kept me at the point I could function," Negley said.
The cost amounted to
Out of pocket he paid about
Much of the treatment fell outside his health insurance coverage. "Your insurance company is not obligated to pay for your treatment because Lyme is not recognized as a long-term treatable disease," Negley said.
His plans for retirement have changed.
"Due to the debilitating illness I could no longer maintain my property," he said. "I had to have good friends come in and help care for my property. Vickie and I needed to downsize more than we had initially planned."
It could mean selling the farm, he said. "We're moving on. We're doing what we have to do to get better. Our goal is to go on. I'm not ready to quit."
Negley said on Thursday that his Lyme is dormant. He has just few symptoms related to the co-infection Bartonella.
He's optimistic about the possibility of returning to work later this month, but his doctor cautioned that he is still within the four-month relapse window.
Negley is enthusiastic about educating people about Lyme disease and preventing its spread.
"He can be pretty adamant,"
As of 2012, Lyme joined the list of more than 100 training topics offered by state safety officers.
"It's an exposure for people out there," said
Contractors clear vacant lots. Landscapers work in bushes. Roustabouts work in the woods on Marcellus shale rigs.
"A lot of people out there can't get what they need," Negley said "What's it going to take for the government to reach better treatment protocols? The government needs to be more positive about it. If the government is not going to help the people, the people need to help themselves."
"Lay people understand Lyme," Stonsifer said. "The tough part is trying to educate the doctors. Until the science comes out that's going to be difficult."
Doctors have lost their licenses in other states for treating Lyme outside the CDC guidelines. Many feel they are doing the right thing in helping patients combat a chronic illness, but a majority of doctors in the country feel those doctors are treating inappropriately, according to Stonsifer.
"You are going against the grain," Stonsifer said. "I worry about it. It's something I consider. I feel like I'm doing the right thing. You see a patient become well again after years and years. Whatever comes ahead I'll deal with."
He said he knew he was on the right track when he started seeing referrals from other doctors.
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