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BY SUSAN TOM Statesman
Journal Salem, Oregon For months, the mother of three thought that she had Lou Gehrig's disease, a progressive neuromuscular disease with no cure. Doctors gave her between 18 months and five years to live. Lyme disease was a reprieve from the death sentence. With treatment and luck, the 25-year-old Aumsville resident could recover some of her physical abilities. Her speech is slurred and she still needs help with personal care, but she now can use a walker. Although there are more than 16,000 cases of Lyme disease in the United States each year, health experts say it often gets misdiagnosed in areas where it is not prevalent, including Oregon. Chytka’s story is an example of how people can help themselves by taking an active role in their own health rather than accepting a doctor's opinion without question. I didn't believe it, she said of the Lou Gehrig's disease diagnosis. I read the symptoms, and I had so many other things besides them. Chytka began researching the symptoms on her own out of desperation and defiance, looking up diseases and doctors on the Internet. One response eventually led her to a San Francisco specialist, and in March he diagnosed her with Lyme disease. Now, Chytka and her husband, Chris, are urging people to learn as much as possible about their illnesses and seek a second and even third opinion. She’s very stubborn, and if it were not for that, and not believing the doctor's diagnosis, she'd be sitting around waiting to die, Chris Chytka said. This is proof that doctors don't always know what they're doing. How the disease happens Lyme disease is caused by a bacterium and transmitted to humans by the bite of infected deer ticks. Symptoms include fever and joint pain. A small percentage of people die from the ailment, which generally is treatable with antibiotics. Lyme disease is most common along the Eastern seaboard, and although it does crop up in Oregon, it is not widespread. Dr. Emilio DeBess, an epidemiologist with the Oregon Department of Human Services, said there are about 15 cases per year in the state. Most ticks live in low-elevation, wooded areas west of the Cascades where habitats such as leaves and vegetation, and carriers such as wood rats keep the infection active year-round. Half of the ticks on the East Coast carry the disease, compared to less than 4 percent in Oregon, DeBess said. Many doctors don't consider Lyme disease when making a diagnosis because there are so few cases in Oregon, said Dr. Rafael Stricker, a San Francisco hematologist who has treated about a dozen Lyme-disease patients from Oregon, including Chytka. The symptoms, which include joint pain, flulike fevers, fatigue and paralysis of the facial muscles, are shared by other diseases such as multiple sclerosis and Lou Gehrig's disease, also known as ALS, or amyotrophic lateral sclerosis. Most people don't remember being bitten by a tick and don't get the rash associated with Lyme disease. What’s even worse is doctors saying nothing is wrong and it's all in your head, Stricker said. There is no vaccine for Lyme disease. The last one was withdrawn by the manufacturer after a class-action lawsuit alleged that the vaccine caused Lyme-like syndrome in patients. But health experts agree that the earlier the diagnosis, the better chances of recovery. Tough to diagnose For Chytka, about five months passed between the ALS and Lyme-disease diagnoses. When she was diagnosed in October with ALS, she was shocked. The thought of leaving three children, now ages 6, 4, and 2, without a mom was agonizing. I was not going to let (the disease) tell me how I had to live,Chytka said as she mopped tears from her eyes. That was when she began searching for answers herself. Dr. Elizabeth Blount, Chytka's family doctor in Silverton, said she is treating Chytka for Lyme disease despite the conflicting diagnoses. Oregon Health & Science University, where Blount sent Chytka last year, said it was ALS. Stricker, the San Francisco specialist, diagnosed it as Lyme disease, but a second opinion from a Salem specialist said it was not. I’m not sure what to believe, Blount said. There's an outside chance she could have both. Although both diseases have similar symptoms, Lyme disease often causes arthritis and inflammation, and ALS isn't associated with pain, Blount said. She also supported Chytka's desire to try the antibiotic because the family wanted hope. When you have a hopeless disease with no treatment, people will try anything, Blount said. But Stricker, the San Francisco doctor, said that Chytka has the neurologic form of Lyme disease, which is severe and does not respond to antibiotics like the other types. It is hard to know how much of her abilities she will recover, but Stricker said he has been impressed with her recovery and response to the antibiotics. He will have a better idea within a year. It also depends how long the disease goes without being treated, Stricker said. After a week on the new IV medication, Chytka is making visible improvements, said JoElla Coleman, Chytka's caregiver and cousin by marriage. She’s getting stronger, Coleman said. At her worst, Chytka’s hips, knees and joints hurt and she had some swelling. Her toes sometimes were numb and she was losing her grip strength and use of her hands. Her reactions slowed, her speech slurred and she was falling a lot. She had to concentrate hard to get the messages to her brain to move her body. Now, since the new drug therapy, Chytka can take a few steps with the help of a walker. Recovery begins The Lyme disease diagnosis was a big relief for the entire family, which has been showing signs of stress, anxiety and depression during the ordeal. Brianna, 6, the oldest of the three children, was throwing tantrums. Last month, husband Chris went on antidepressants. It was very overwhelming and hectic, said the apprentice pipe fitter. I tried to manage the best I could for as long as I could and ask for help from family members and friends.? Before Kara Chytka got sick, her income from a part-time job was helping the family toward their goal of buying a home. Now they are more than willing to take on more debt to get her well. Chris Chytka has health insurance and Kara has the Oregon Health Plan and some Social Security income, but not all of her medical expenses are covered. Family and friends have helped with fund-raisers and by offering their time. One stranger paid the balance of their grocery-store bill when they were short on cash at the checkout. Another put on a July 4 barbecue fund-raiser. Coleman arrives at her cousin’s house at 7 a.m. on weekdays and is Chytka’s caregiver until 4 p.m., when Chris Chytka returns from work. It’s made me appreciate my family and realize how many people really care and are willing to sacrifice their time, he said. Now the Chytkas want to spread that good will by increasing public awareness of the disease with their story. Chytka said that dealing with Lyme disease is not easy, but at least she can live with it. You have to fight and stay positive, otherwise you won’t get anywhere, she said. About Lyme disease Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans by the bite of infected deer ticks. It mostly is found in states in the northeastern, mid-Atlantic, and upper north-central regions and in several counties in northwestern California. Individuals at risk include: People who live or work in residential areas surrounded by tick-infested woods or overgrown brush. People who work or play in their yard, participate in recreational activities away from home such as hiking, camping, fishing and hunting, or engage in outdoor occupations, such as landscaping, brush clearing, forestry, and wildlife and parks management in endemic areas. To protect yourself against the sesame-seed-sized ticks, wear long sleeves and use a tick repellent. If you are bitten, go immediately to a medical provider to remove the tick. It is not advisable to remove the tick yourself because it digs into the skin, attaching its mouthpiece. It takes more than 24 hours for a disease-carrying tick to pass an infection. The incubation period is seven to 10 days, but it can take as long as two weeks. Source: The U.S. Centers for Disease Control and the Oregon Department of Human Services. |
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