ELLSWORTH, Maine — Scott and Holly Lounder finally feel like they have many of the answers they’ve been looking for.
The local couple, who own and operate a martial arts studio on Bangor Road, say they each can trace their medical symptoms back over a decade — symptoms, they say, that have left them feeling confused, exhausted, frustrated and in pain.
Holly, 38, can remember having neurological problems as far back as the 1980s while growing up in the Ellsworth area. Scott, 43, says his issues with pain and fatigue began around 1998. Both say that it took years of doctor visits and false diagnoses before they found out that they both have Lyme disease.
“I was on antibiotics all the time as a kid,” Holly Lounder said Saturday, lying in a recliner in the living room of their rented home. “I struggled throughout my childhood and young adulthood with headaches, knee pain, joint issues and fatigue.”
Holly said she always spent a lot of time outdoors and, looking back, can remember several times when she probably had tick bites but mistook them for other things.
Doctors gave her many tests and came up with varying diagnoses of chronic fatigue syndrome, fibromyalgia and depression, but could not come up with an effective explanation or treatment, she said. A self-described adrenaline junkie, she learned how to function and, despite the symptoms, became a third-degree black belt in karate, earning a state championship along the way.
But last summer, while undergoing intense training to get her fourth-degree black belt, the symptoms came back with a vengeance. In a matter of two months, she said, she went from hiking in Acadia National Park to being bedridden and unable to walk.
Friends and relatives who were familiar with Lyme disease encouraged Holly to be tested for it again. Last November, after finding a ‘Lyme-literate’ physician in Washington, D.C., named Ginger Savely, she tested positive for the disease and started taking prescribed medication.
“It was like, ‘ding!’ It made complete sense,” Holly said. “I’m a lot better now. I can’t walk very far. I get tired really easy but I’m not having seizures anymore.”
Scott says he started developing symptoms of fatigue, chronic back pain and joints that were sore and stiff a couple of years after meeting Holly in the 1990s. He is not sure how he got the disease, but said it may have been sexually transmitted.
He said at one point he too was diagnosed with depression, which he soon discounted, and he chalked up his symptoms to old age. Holly’s Lyme diagnosis last fall, he said, suddenly shed light on his condition.
“I quickly realized I have a lot of the same things,” Scott said. “I went and got the testing done and, sure enough, I was positive.”
The Lounders expressed frustration at negotiating a health care system that they say lacks sufficient support for or understanding of Lyme patients. Some doctors continue to question the existence of the disease, they said, and though some doctors believe Lyme is a chronic condition, the medical establishment does not. Many doctors are not willing to publicly state their views about Lyme because of the controversy that surrounds it, they said.
Doctors in Maine can get in trouble if they prescribe more than four weeks’ worth of medicine for Lyme patients, they said, which is why Holly is getting treatment from a physician out of state. Scott said he would use the same doctor in Washington, D.C., if they could, but they cannot afford it, so he has a doctor in Ellsworth. He declined to identify his doctor.
“Our doctors need to be more educated,” he said. “Lyme is such a hard thing to diagnose. It can present itself as multiple sclerosis, as lupus, as fibromyalgia, rheumatoid arthritis, chronic fatigue syndrome, you name it.”
In the meantime, the Lounders have been trying to keep up with the costs of treatment. Holly was laid off this winter from her job at Kidspeace in Ellsworth after being on medical leave for six months. Scott owns and operates a chimney cleaning business and helps a relative who owns a blueberry farm, but those jobs are seasonal. The karate school, they said, has been tough to maintain, given their physical condition, and it does not generate a lot of income.
“We’re just taking it week by week as far as getting medications and praying the money’s there. So far it has been, one way or another,” Scott said.
They have been getting help. A daughter’s soccer team has helped raise money to pay for treatment, and earlier this month a benefit was held for them at the local middle school. A beneficiary account has been set up for them at Bar Harbor Banking and Trust, they said. Donations can be mailed to: The Lounder Family Fund, P.O. Box 269, 125 High Street, Ellsworth, Maine 04605.
“We would be homeless in June when our lease is up,” if not for the community support, Holly said. “It’s gotten us through the winter — completely 100 percent.”
They have cut back somewhat on karate instruction and have gotten help leading classes. It could take them years to recover from their Lyme symptoms, they said, and they hope to still have their karate school when they regain their health.
“We’ve worked so hard for this school, and it’s such a positive thing in the community. Losing it would be a shame for everybody,” Holly said.