When insurance firms launched social media initiatives, the results were rewarding.
July 07--CHAMBERSBURG -- Randy Negley has spent the past three years, and a chunk of his life savings, fighting a disease that nearly crippled him.
Negley, a Hamilton Township supervisor and president of the Franklin County Emergency Alliance, is making a comeback from "chronic Lyme disease."
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 Philadelphia area. "My goal is to get better, and to educate other people and make them aware of Lyme. The illness is overpowering in so many ways. Physically, mentally and financially it's a drainer. It's a financial disaster. It's very life changing."
Lyme disease is the most commonly reported illness spread by animals to humans in America, according to the Centers for Disease Control, Atlanta. Ticks, typically deer ticks, infect humans with a bacterium that causes Lyme disease.
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 Raphael B. Stricker and Lorraine Johnson, a physician and attorney with the International Lyme and Associated Diseases Society. "A coordinated 'Manhattan project' similar to the attack mounted against the HIV/AIDS epidemic is urgently needed to address the serious worldwide threat of Lyme disease."
June and July is the prime season for Lyme infections.
Pennsylvania's infection rate is five times the national average, but it gets little publicity:
--You're only twice as likely to be injured in a vehicle crash as to contract Lyme in Pennsylvania, according to CDC data.
--You're seven times more likely to contract Lyme than West Nile. Pennsylvania in 2012 reported 60 cases of West Nile virus in humans and 4,146 cases of Lyme.
The state has spent nothing on Lyme disease surveillance and education, but more than $3 million a year keeping track of West Nile, which is spread by mosquitoes.
That will change. Gov. Tom Corbett recently signed legislation (Senate Bill 177) that requires the state set up a program to keep an eye on ticks and the disease and to tell people about it.
Based on statewide data, 50 people in Franklin County this year would be expected to contract Lyme. The actual number likely will be greater.
"This is one of the hot spots for Lyme disease in south-central Pennsylvania," said Dr. Timothy Stonsifer, an osteopathic physician in Shippensburg. "Clinically this area seems to be accelerating rapidly."
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 Philadelphia where their family members had success. Negley was evaluated in November and moved to an apartment near the clinic in January for one-hour treatments five days a week. He came home on weekends.
"I was blessed that the medicine kept me at the point I could function," Negley said.
The cost amounted to $8,000 a month, including the apartment and turnpike tolls.
Out of pocket he paid about $5,000 a month. Benefits from his employer's disability insurance helped.
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," Hamilton Township Supervisor Michael Kessinger said. "He's starting to come back with that 'Randy-ism.' He's slowly getting back to that. He wants to come back to work. We try to keep encouraging him."
Vickie Negley arranged for the Pennsylvania Department of Labor and Industry to speak to the Franklin County Council of Governments about the hazards, prevention and treatment of Lyme disease.
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 Scott Weiant, chief of health and safety division. "Employers are proactive to provide training."
Contractors clear vacant lots. Landscapers work in bushes. Roustabouts work in the woods on Marcellus shale rigs.
Trainer Stephen Lane encouraged workers who are exposed to tick environments to conduct frequent checks and to conduct a thorough final check similar to a haz-mat team's decontamination. He said employers might consider having tick gaiters or insect repellents available for employees.
Randy Negley suggests putting your exposed clothing in a separate pile to be washed quickly. If the clothes are not dirty, run them in the dryer on hot for 10 minutes.
"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.
Jim Hook can be reached at 717-262-4759.
(c)2014 the Public Opinion (Chambersburg, Pa.)
Visit the Public Opinion (Chambersburg, Pa.) at www.publicopiniononline.com
Distributed by MCT Information Services