By KAREN PARKER | County Line Editor
It’s an oddly insidious disease that for some requires no more than a short course of oral antibiotic therapy to cure, but for others, the effects are long lasting, excruciatingly painful and life changing.
Western Wisconsin is ground zero for Lyme disease, and it would be impossible to find anyone who has not either had the disease or knows someone who had it. Those suffering long-term illness due to Lyme disease have few resources to help them cope.
Gary Cepek of Hillsboro aims to change that by forming a support group for Lyme sufferers and their families. Cepek is no stranger to the debilitating effects of Lyme disease. The 61-year-old thinks he might have had it for at least 20 years, and he said he had suffered at least 35 symptoms during that time.
Gary Cepek of Hillsboro will be the facilitator for a new support group for Lyme disease sufferers.
A graduate of Hillsboro High School, Cepek farmed with his father on the family farm just outside of Hillsboro until he went to college and then to seminary. He served as a pastor with the Wisconsin Synod in Milwaukee, and then took over a pastorate in Nebraska.
But he maintained his ties with the family farm, and he thinks a trip home in 2006 led to a tick bite that might have been the tipping point in his battle with Lyme disease.
For a decade before, Cepek had been suffering with a variety of illnesses, including a bacterial infection of his heart and prostate problems requiring multiple surgeries. In addition, he experienced swelling in his knees so painful that he could not walk at times; vision obscured by halos; rashes; palsy-like symptoms; and a broad range of other health issues.
A few years ago, Cepek and his wife, Suanne, decided to retire and returned to the family farm. After meeting a fellow sufferer, Tammy Gates, the two decided that what was needed was a support group for those stricken with Lyme disease and their families. Research showed them that only a few such groups existed in the state and none in the Coulee Region.
Lyme disease is on the upswing: Just a few hundred cases were confirmed in Wisconsin in 1990, but that figure escalated to 2,346 in 2011.
Cepek thought that those who are quickly identified and treated with antibiotics have the best outcomes. But because the disease manifests itself in so many ways and tests often produce false positives and false negatives, it is often misdiagnosed. Furthermore, victims often write off symptoms as “old age” and don’t seek treatment.
Those who suffer lingering effects often are assumed to have mental health issues and struggle to find and choose treatment among a puzzling array of options.
The medical community is divided over treatment options, with one group favoring long-term antibiotic treatment and the other thinking that it is harmful to patients and has no benefit. It is so controversial that the Romney and Ryan presidential campaign favored a law that would provide “physicians with protection from lawsuits to ensure they can treat the disease with the aggressive antibiotics that are required.”
According to Wikipedia, in 2001, the New York Times magazine reported that “Allen Steere, chief of immunology and rheumatology at Tufts Medical Center and a co-discoverer and leading expert on Lyme disease, had been harassed, stalked, and threatened by patients and patient advocacy groups angry at his refusal to substantiate their diagnoses of ‘chronic’ Lyme disease and endorse long-term antibiotic therapy. Because this intimidation included death threats, Steere was assigned security guards.”
Patients caught in the middle often turn to self-treatment to alleviate their symptoms.
Though Cepek has used both conventional and alternative therapies for his illness, he conceded that his symptoms continue to recur. Although he has six children scattered across the world, he rarely travels anywhere, as a change of habit and location seems to trigger many of his symptoms.
“I will have it for the rest of my life and I will have to learn to live with it,” he said.
Cepek said he sees himself as a facilitator for the group, and though he will have a variety of written materials available for knowledge and research, he does not expect that any one method of treatment will be advocated.
“People can talk if they want to, or not if they don’t feel comfortable doing so.”
Family members of Lyme disease patients also are welcome to attend.
The group will meet the last Friday of each month at the Hillsboro Public Library. The next meeting is slated for Friday, Feb. 22, from 5:30 to 8 p.m. For more information, contact Cepek at 489-2725.