Living daily with pain and fatigue is dreadful. Knowing that many people think the symptoms are “all in your head” makes the pain that much worse. This is the nightmare of Lyme disease for many sufferers.
Jackie Clapp, 36, has lived that nightmare for almost 30 years. “I woke up one day at eight years old in too much pain to walk,” she said. “They brought me to a rheumatologist and tested me for all kinds of things, including Lyme disease. I tested negative for it several times over the years and learned that typical tests miss about 78 percent of Lyme cases.”
She finally received the correct diagnosis at age 32, after the disease had ravaged much of her body. Taking 96 pills a day, along with shots and other treatments, Jackie said, “The supplements and things I’m supposed to be taking are not covered by insurance and would cost more than $2,000 a month. So I don’t take everything I should.”
That’s why her aunt recommended an online fund through Community Benefit Tree, Inc. (CBT). The 501(c)3 nonprofit, dedicated to helping individuals and families struggling with medical crises, vets all applicants before setting up a fund to receive tax-deductible contributions. Jackie’s family decided to call her fund, “Jackie’s Fishin’ for Remission Fund” because, her mother, Sharon Gassen said, “Fishing is Jackie’s passion.”
She still gets out in a kayak whenever she can, Jackie said. But she doesn’t go far and never goes alone, even though she wears a life jacket. “Fishing was also my God time,” she said. “I would go out in the kayak and fish and talk with God.”
Lyme disease often affects memory. “What really hurt,” Jackie said, “was a couple years ago, when springtime came, I couldn’t even remember my knots or what to use my lures for. I couldn’t fish tournaments anymore.”
Lyme sufferers lose a lot and often get little support from others. “They say that people don’t ‘get it’ until they get it themselves,” Jackie said. “If people with Lyme go out of the house, they look pretty normal, and no one who doesn’t know them well would know they’re sick. If I’m out, it means that’s the one day I was able to take a shower and go do errands, and I’m extremely happy because I’m out in the world.
“I’m able to communicate in full sentences that make sense. So I’m talking to everybody, and they have no clue that it took me an entire week of rest to get to that point. I lose my train of thought very easily, so communication, especially if I’m tired, is very hard.”
Because Jackie hasn’t been able to maintain employment, she and her eleven-year-old daughter have had to move in with her mother. They carry BadgerCare insurance, but Jackie’s medications come out of pocket.
“I do whatever I can to keep my spirits up,” Jackie said, “because that’s going to help me heal and get back to work. I want to get back to work so badly.”
One thing that might help her reach that goal by putting her into remission is alternative treatments that have been successful for many people. However, according to Jackie, part of that protocol involves spending several weeks in Germany. For someone who can’t afford all of the medications she’s supposed to take, such treatment is financially out of reach.
Worse yet, most people don’t realize that Lyme is often accompanied by co-infections that affect the heart, bones, brain and nervous system. For many, the disease is fatal. “I lost 10 friends last month and two so far this month,” Jackie said.
Readers wishing to help Jackie reach remission can donate to her fund at www.communitybenefittree.org. Information about Jackie’s fund is near the bottom of the home page.