Lyme can have devastating effects

It’s a wonder to many that such a small creature can cause so much trouble, but people who have suffered complications from Lyme disease will tell you differently. For St. Marys resident Yolanda Wolfel, the experience wasn’t a cut-and-dried, classic Lyme case. In the late 1980s, both Wolfel and her husband fell ill, but couldn’t determine the cause. Her husband had had heart surgery, so she thought maybe an infected blood transfusion could have been to blame. They were tested for a variety of conditions, including AIDS. Various diagnoses included fibromyalgia, hypochondria and even mental illness. “I went to 14 different doctors before I diagnosed myself and my husband [with Lyme] in 1990,” Wolfel said. Wolfel said she believes she contracted Lyme just by spending time in her backyard hanging out clothes while barefoot, and that her husband got it while cutting grass—two very ordinary activities that most area residents engage in. She said deep-woods hikers, hunters and other outdoor enthusiasts aren’t the only ones at risk for contracting the disease— the rural aspects of Elk County and its abundance of leafy vegetation is risk enough."You don’t have to go hunting to get Lyme disease,” Wolfel said. “And you can’t treat every blade of grass with repellent because it’s impossible." After her diagnosis, Wolfel founded North Central PA Lyme Disease Support and Information and ever since has provided informational programs and educational materials to groups, organizations and individuals in Elk and surrounding counties. Wolfel said her research has shown that Lyme has been around since 1906 and that it is the fastest-growing disease in the nation. The disease is caused by the bite of an infected tick that carries a bacterium which causes Lyme disease. According to Wolfel, Pennsylvania is now first in the nation for Lyme disease and causes an economic drain on the state in terms of lost working days due to symptoms and long-term effects. St. Marys resident Missy Straub Jacobs knows well the long road to recovering from Lyme from a parent’s point of view. Her daughter Autumn contracted it and was not properly diagnosed for some time. It took a toll on Autumn’s overall health-- it left her increasingly weak and fatigued and she had to take a leave of absence from the teaching job she held at that time. Finally receiving a diagnosis after about a year, Autumn received antibiotic treatment and has since done much better, enjoying life with her husband and giving birth to a son. However, she still has some fatigue, joint pain and other lingering effects of the disease and continues to take high doses of antibiotics.Jacobs said it is not unusual for a diagnosis of Lyme to take several months or in some cases, several years. Although her daughter did have several tests for Lyme, the first few results came back negative. The standard ELISA test used to detect Lyme disease is unreliable, according to the International Lyme and Associated Diseases Society, (ILADS, The nonprofit national organization says the test misses 35 percent of culture-proven Lyme disease (only 65 percent sensitivity) and is unacceptable as the first step of a two-step screening protocol. According to ILADS, the Western Blot is a better test and more conclusive, but is also often unreliable because it may not always be sensitive enough to detect chronic infection with the Lyme spirochete, the bacterium that causes the disease. Jacobs said many people have had blood tests which came back negative and still had the disease. According to ILADS, Lyme disease needs to be a clinical diagnosis. Jacobs said the “wait-and-see” approach can be risky because when symptoms do become evident, the disease may have already entered the central nervous system and could be hard to cure. Chronic Lyme disease can cause severe fatigue, anxiety, headaches, joint pain and other debilitating effects that can profoundly affect a person’s quality of life.“Fifty percent of people don’t see a tick and they don’t see or get a rash,” Jacobs said.