Sitting inside the General Assembly in Richmond, Barbara Roberts held her breath as she watched legislators vote on the Lyme Disease Testing Information Disclosure Act — a bill she had been supporting for more than a year.
Even after the bill passed, Roberts remained calm, having been previously instructed not to react to the voting results. She quietly left the building, and then let her emotions break through.
“I walked outside and then I was in tears,” she said. “Everyone was hugging and crying.”
The LDTIDA, which was signed into law in March by Gov. Bob McDonnell, requires doctors in Virginia to present patients tested for Lyme disease with information that explains the possibility of false negatives.
For Roberts, the director of the Shenandoah Chapter of the National Capital Lyme Association, the event represented a personal victory against a disease that has reduced her quality of life for more than two decades.
Roberts began to experience flu-like symptoms in 1987, but never suspected Lyme disease because she had no bite marks. Her symptoms would subside, but then reoccur after a few weeks or months. She was tested for a multitude of illnesses, such as Lupus and cancer, but the results always came back negative.
“After a while, you start to think you’re going crazy,” she said.
As years passed, symptom flare-ups became more intense.
Lyme disease can take many different forms, but Roberts suffered from muscle spasms, debilitating headaches, joint pain, body aches, memory loss and fatigue.
“It’s not tiredness, it’s physical and mental fatigue,” she says, stressing the difference. “Getting from one chair to another was an accomplishment.”
After reading about chronic Lyme disorders in the early 2000s, Roberts asked her doctor to test her, but the results came back negative. However, because of her research, Roberts knew the test was not always reliable.
She continued to explore Lyme disease as a possibility, and was re-tested in 2002 by a Lyme-literate doctor in Pennsylvania. She discovered she had neurological Lyme disease, which can occur when an untreated case of Lyme spreads to the central nervous system. Roberts took rounds of long-term antibiotics on and off for the next decade, and though not cured, has seen improvement.
“I was at the point where I was thinking ‘I can’t do this anymore’ and I don’t feel that way now,” she says.
Making A Difference
Her own exhausting struggle inspired her to start the Shenandoah Chapter of the NCLA, which meets monthly in Harrisonburg. Her goal was to create a support system for area residents who have the disease.
Linville local Marlin Burkholder, a farmer, has been attending the group since he was diagnosed with neurological Lyme disease in 2010.
Like Roberts, Marlin spent years suffering from his symptoms — which included fatigue, muscle pains, chest pain, rapid pulse, tremors and panic attacks — before learning why he was sick.
Marlin and his wife Christine are both largely disappointed with the health care system’s general attitude toward chronic Lyme disorders. According to the couple, many doctors were reluctant to treat Marlin due to the controversies surrounding the illness.
After researching his symptoms, Marlin remembers visiting a neurologist and asking if he might have neurological Lyme.
“He didn’t even want to look into it; he said it was too controversial,” recalls Marlin. “He didn’t want to touch it.”
He says he also received a similar reaction from a family physician, who told him he “didn’t know anything about it, and didn’t want to know.”
Marlin believes the topic is controversial because insurance companies are unenthused about supporting a chronic disease that is hard to diagnose and costly to treat.
“It’s largely about money, that’s my opinion,” he says. “I think it goes back to insurance companies and what they’re willing to pay.”
Christine thinks the Infectious Disease Society of America is also partially responsible because the organization has denied chronic Lyme disease exists.
“A couple of doctors were taken to court for actually treating chronic Lyme, and in the trial [IDSA] denied there was such a thing, so any doctors who went against the IDSA guidelines [were afraid they] could get sued,” she says.
However, she believes the new law marks the start of a fresh chapter for Virginia.
“They’re recognizing that it is a disease, that it is a problem, and that the blood test is not reliable,” she says. “We’ve made progress.”
While the Burkholders are excited, the Medical Society of Virginia fought against the law, arguing that it interferes with the physician-patient relationship. Multiple local doctors were contacted for comment, but all declined.
Roberts, for one, fails to see why the law is controversial.
“If you’re still sick [after testing negative], don’t give up,” she says. “That’s basically what it says.”
Contact Katie King at (540) 574-6271 or email@example.com.
The National Capital Lyme Association is a non-profit organization committed to helping those with tick-borne illnesses.
For information about the local chapter visit their website http://www.natcaplyme.org.