Bull's-eye: Lyme disease victims take back their lives

CHAMBERSBURG - Chronic Lyme victims are owning their disease.

Unlike health insurance companies and the traditional medical community, those suffering the aches and pains are coming to grips with “post-treatment Lyme disease syndrome.”

Lyme can cling to its victims, like the deer ticks that carry it, and suck out life. Many victims, relieved to have survived, want others to know how to prevent it and how to cope with it.

Rachel Long, 24, decided to quit medical school after one of her professors told her the condition which had planted her in a wheelchair was not a recognized disease. She has become a certified naturopath and is pursuing a doctorate in mind and body.

Long had a severe bout with Lyme when she was a 16-year-old drum major at Chambersburg Area Senior High School. She nearly died.

 “Going through this disease I developed a passion for life and helping others,” Long said. “I think that’s what keeps me going. It’s not about finding a cure. It’s about helping others.”

She no longer needs the wheelchair. She’s running and exercising. She’s published a book about her experience. She’s opened an alternative health service, Rachel E Wellness, in Chambersburg.

“So many people want help,” she said. “I’m not here to cure or diagnose. I’m after that. There is always hope. I believe there is a time and place for medical treatment, and a time and place for what I do.”

“Lyme literate” doctors and natural therapies are offering Lyme sufferers more than hope. Victims often run from doctor to doctor as their conditions fail to improve. Then, they learn about a friend’s success with nontraditional Lyme treatment from medical doctors willing to work outside the guidelines of the Centers for Disease Control.

Long’s family found her a Lyme doctor in the Philadelphia area. Twice he treated her over the long term with antibiotics.

“I want to call it a miracle,” she said. “So many people were praying for me. Natural therapy and prayer have gotten me to where I am today.”

More:PA is nation's Lyme leader, and worst year could be ahead

More:Pa. pays scant attention to Lyme disease

A primer on Lyme disease

Each year more than 30,000 cases of Lyme disease are reported in the U.S., but studies estimate that the actual number is closed to 300,000.

The most common vector-borne disease in the U.S., Lyme was first identified in 1975 in arthritic children in Lyme, Connecticut. It has been reported in all 50 states. The number of high-risk counties has more than tripled in 20 years.  

The symptoms of Lyme disease are similar to symptoms of many other diseases. Patients have been misdiagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, psychiatric illnesses, multiple sclerosis, Parkinson’s and Alzheimer’s.

The disease is caused by a spiral-shaped bacteria, Borrelia Burgdorferi, which can infect multiple organs and produce a wide range of symptoms.

Early symptoms include a rash, which may appear as a bull’s-eye. Not all victims develop a rash.

Later symptoms include fever and chills, headaches, stiff neck, meningitis or inflammation of the brain and spinal cord, leading to headaches and a stiff neck, additional rashes, swollen lymph nodes, fatigue, heart palpitations or irregular heart beat,  facial palsy,  dizziness and shortness of breath, nerve pain or shooting pains, numbness or tingling in the hands or feet and pain in tendons, muscles, joints, and bones, especially in the large joints.

Later still, a person suffering from Lyme disease may develop “brain fog,” sleep and vision problems, memory loss, irregular heart beat, joint pain, paralysis of the face muscles, numbness, pain and tingling.

More:Take Care: How to protect yourself from Lyme disease

Politics of Lyme

Lyme has its own politics.

“Congress just moved to push the Centers for Disease Control and the National Institutes of Health to redo their protocols on Lyme disease,” said Renee Sharpe, acting president of the Chambersburg Lyme Alliance. “That is a huge development. The CDC has relied on protocol and dates from before 2005, and it does not recognize chronic Lyme as a condition. The protocol is: Once you're treated for Lyme, it’s gone. That’s where all the controversy stems from.”

CDC has ignored more than a decade of research about chronic Lyme, Sharpe said. Because CDC clings to its current protocol, the mainstream medical community has been slow to move to recognize chronic Lyme.

A spokeswoman for Summit Health, the primary health care provider in Franklin County, referred Lyme treatment questions to the CDC.

“The problem is we have so few doctors in the area who know the reality of Lyme disease,” Sharpe said.

“CDC and NIH have fallen short in their mission to fight the Lyme epidemic,” said Bruce Fries, president of the Maryland-based Patient Centered Care Advocacy Group. “The number of cases continues to grow, the geographic range continues to expand, the CDC-endorsed two-tier test is highly unreliable, CDC- and NIH-sanctioned treatment options fail up to 36 percent of the time, and no human vaccines are available.”

Congress recently directed the CDC and NIH to improve programs on surveillance, prevention, diagnosis, and treatment of Lyme disease. The health agencies must report their progress so Congress can determine future funding. The CDC also must justify the funding disparities between Lyme disease ($63 a case) and other less common vector-borne diseases, such as West Nile virus (nearly $20,000 a case).

The CDC recognizes the Lyme treatment guidelines established by the Infectious Diseases Society of America, a medical association. The CDC dropped references to the IDSA guidelines on its website after Lyme patients sued IDSA, its members and their health insurance companies.

The 28 Lyme patients in November filed a federal racketeer and antitrust lawsuit in Texas and claimed that health insurers denied them coverage based on sham IDSA guidelines set by their insurers’ paid consultants.

Those coping with chronic Lyme pay for treatment out of pocket. Diagnostic testing alone can cost $2,000, and that’s after running from specialist to specialist who wind up treating symptoms and not the underlying cause.

The International Lyme and Associated Diseases Society recognizes chronic Lyme. At one point, the Pennsylvania Department of Health listed ILADS guidelines on its website.

Pennsylvania has its own Lyme politics.

More:Bill pushing insurers, doctors to act on Lyme disease moves to Senate

A state task force in 2015 recommended that at the very least Pennsylvania should spend money on education and awareness about Lyme disease. It hasn’t happened yet.

Gov. Tom Wolf, a Democrat, has proposed spending $2.5 million in fiscal 2019 on education, prevention, a surveillance program and a staff to implement the recommendations of the Lyme Disease Task Force.

"While there are many budget priorities on which Sen. Alloway and Gov. Wolf disagree, funding for Lyme awareness and surveillance is certainly not one of them," said Jeremy Shoemaker, chief of staff for Sen. Richard Alloway II, R-Chambersburg, 

The Republican-controlled House last spring overwhelmingly passed legislation that would require insurers to pay for chronic Lyme treatment. The legislation, House Bill 174, and the companion Senate Bill 100 remain in the Senate Banking and Insurance Committee.

“They put it there so it would fade away,” Sharpe said.

Sen. John Eichelberger, R-Hollidaysburg and vice chairman of the Senate banking committee, did not respond to questions about Lyme.

“There has been significant disagreement among the medical community as to whether or not the science supports the treatment options this legislation proposes to mandate,” said Jeremy Shoemaker, Alloway’s chief of staff. “As those discussions continue and hearings are held, the legislation has remained in committee.”

Alloway remains committed to the issue and is continuing to push for passage of the legislation, Shoemaker said.

Related video: Public Opinion and Gannett recently awarded a $3,000 grant to the Chambersburg Lyme Alliance (story continues below video). 

'So many people sick'

Pennsylvania leads the nation in the number of Lyme cases, nearly 9,000 in 2016, and southcentral region is a hot spot. Lyme awareness, testing and reporting varies from county to county, according to the state health department. 

The year that the state Lyme Disease Task Force first met, Aiden Pollock was just recovering from chronic Lyme.

The 4-year-old had suffered through two years of constant headaches, joint pain and sickness.

“He said: ‘It hurts when I chew,’” said his mother Angela Pollock. “He put his head down. It was sad to see. At that time of my life I had no experience of Lyme disease. His cold would turn into bronchitis, and it would turn into pneumonia. Doctors would just send him to different doctors – the neurologist, the eye specialist.”

The worst part for Mom was the frustration of seeing her son hurt and not knowing what to do, according to Pollock, the principal at Marion and Andrew Buchanan elementary schools.

“It was a lot of unknowns for so long,” she said. “And it was for me to figure it out.”

Finally, she heard about chronic Lyme from a friend and a doctor offering treatment. After several months of different antibiotics, Adien improved.

“The joint pain and headaches stopped,” Pollock said. “Knock on wood, he has been symptom-free.”

Medical professionals did not have the knowledge to know what to do, Pollock said.

Her pediatrician initially had prescribed a moderate round of antibiotics for the bull’s eye rash he had when he was 2.

“It definitely wasn’t enough,” she said.  

“It’s a horrible disease. What can I say?” said Harold Cohick, a longtime victim of Lyme and outgoing president of Chambersburg Lyme Alliance. “I’m on the computer 10 hours a day helping people. I need a break.”

Sharpe is leading the alliance. She and three of her family have Lyme disease.

“There are so many people sick in the valley it’s staggering,” she said. “People don’t know what to do. If they get a support group they can help each other.”

The Chambersburg Lyme Alliance will host a Lyme prevention and awareness program from 7 to 9 p.m. on Thursday, April 26, at the Presbyterian Church of the Falling Spring,  221 N. Main St. Chambersburg. Dr. Robert Mauss from Gettysburg Osteopathic Family Health Center will speak.

Know this about ticks

Half ofpeople routinely do not take steps to protect themselves against tick bites during warm weather, according to the Centers for Disease, Atlanta. Reports of Lyme disease increase in May, Lyme Awareness Month, and peak in July.

Tick Tips

• Walk in the middle of trails, avoid sitting on logs and leaning on trees

• Wear a hat, tuck in hair if possible.
• Wear a long-sleeved shirt fitted at the waist.
• Wear shoes, no bare feet or sandals.
• Wear long pants, tucked into socks or duct-taped around the ankles.
• Consider DEET for skin and permethrin for clothes.
• Wear light-colored clothing to make it easier to see ticks.
• Check for ticks immediately and 3 days after outdoor activity.
• If you see a tick, as an adult to remove it carefully and save it.

Source: California Lyme Disease Awareness