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Home My WebLink AboutHuron Expositor, 2005-10-05, Page 1414 - October 5, 2005 • The Huron Expositor News Huron families struggle with Lyme disease Three families share difficulties with diagnosis and urge more testing for Lyme disease Jennifer Hubbard There may be only one confirmed case of Lyme disease in Huron County, but it's a reality that at least three Huron County families deal with every day. While she has suffered from many of the symp- toms of Lyme disease for the past 15 years, Scarlett Swan, of Seaforth, has never received a positive diagnosis. But, after two and a half years of being shunt- ed from specialist to specialist and being tested for everything from lupus to MS, she finally saw a Lyme disease specialist who decided to treat her as if she had the disease and she began to improve. "I was at the point of total collapse. All the doc- tors kept saying it couldn't be Lyme disease because it (the disease) wasn't in Ontario. And, then they asked if I'd been to Long Point or Point Pelee and said I couldn't have it because I hadn't been there," she says. "So many of us fall through the cracks. People need to know that Lyme disease is here and they have to insist on being tested," says Swan. Lyme disease is a bacterial infection (Borellia burgdorfer), spread by ticks. Symptoms can be as mild as fever and chills and as serious as muscle paralysis, severe arthritis, or heart and neurolog- ical disorders. According to the Canadian Lyme Disease Foundation, most disease transmitting bites occur from a tick in the nymph stage, when ticks are only the size of a poppy seed. Many victims do not recall a bite, and only a minority, about 30 per cent will get the `bull's eye' rash. Working as a veterinary technician in Zurich, Ont., Swan believes she was bitten by a tick while walking along a roadside ditch during her lunch hour. She never found the tick but had the typical bullseye bite on her right leg and began having flu-like symptoms and joint pain. She also ended up developing arthritis and heart beat problems, all symptoms she found were typical of Lyme dis- ease: While she doesn't want to look back at the "what ifs," Swan says she wishes she'd pushed harder for the blood test for Lyme disease since she now has permanent damage when early treatment could have lessened the severity of her he lth challenges. Swan tried to return to work several times but suffers from constant joint pain, recurrent fevers and is easily fatigued. "They call Lyme the great imitator and I was tested numerous times for other conditions. You start to think you're crazy. To me, I had Lyme disease and I started asking to be tested .six weeks into it," she says. Linda Stobo, of the Huron County Health Unit, says only one Huron County resident has been reported as having Lyme disease and that case was reported in 2004. "We can only report what we know is confirmed from the public health laboratory," she says, adding that as a reportable disease, Lyme dis- ease cases are recorded on a provinical data base. "Our job is prevention and surveillance so we encourage people to get their doctors to test for Lyme disease if they think they have it. And, Lyn Jerome we're here to support doctors as well if they're not sure about the disease," says Stobo. To avoid Lyme disease, the Ministry of Health recommends wearing long pants, long-sleeved shirts, socks and closed footwear, along with a tick repellant containing DEET, when walking in grassy or wooded areas. Ticks should be removed as quickly as possible with tweezers and saved to help confirm the ill- ness if you develop symptoms. Disinfect the bite with rubbing alcohol. Receiving word he could return to a modified work week after more than two years off, Lyn Jerome, of Clinton, recently took a huge step in. his ongoing fight against Lyme disease. "It really plays a mind game with you. It's the toughest thing I've had to do over the years," the 63 -year-old said. Jerome was bitten by a tick while retrieving his radio controlled airplane from a bush area during an excursion just south of Goderich in October 2003. "It felt like just a black fly bite, but within a month I noticed a skin tag growth. A week later it changed colour and I went to the doctor because I was worried about it being cancerous," he recalled. Identifying the lesion as a tick bite, Jerome's doctor removed the insect and threw it away. After a bite, the Lyme bacteria spreads into the blood system quickly and can be found within the central nervous system as soon as 12 hours later. Over the next few months Jerome began expe- riencing a variety of symptoms that ranged from extreme fatigue and irregular blood pressure to heart palpitations. After being admitted to the hospital, tests indi- cated Jerome's body functions were beginning to shut down. Recalling the tick bite, Jerome shared his history with the doctor in charge and was soon tested for Lyme. Results from the ELISA test were negative, but as his condition continued to deteriorate, Jerome and his family went through a number of med- ical hoops before pushing their new doctor in Toronto for the more expensive Western Blot Test in California. The second test — an out-of-pocket expense for the Jeromes — came back -positive and nearly one year after the initial tick bite treatment for Lyme disease began. If caught early, Lyme disease can effectively be treated by antibiotics. However, because symp- toms differ from patient to patient, diagnosis of Lyme disease is difficult. Early symptoms are flu-like, but if left untreat- ed the infection may develop into a chronic dis- ease. "If it goes on long enough without treatment it can kill you," Jerome commented. . Common incorrect diagnoses include: fibromyalagia, arthritis, chronic fatigue, heart disorders, lupus, multiple sclerosis, psychiatric disorders, early Alzheimer disease, Crohn's dis- ease, irritable bowel syndrome and many other non-descript illnesses. The diagnosis process for Londesboro-area resi- dent Ray Biesinger and his family wasn't quite as smooth. Developing symptoms in the fall of 1988, Biesinger and his two daughters Aliecia and Uneeta were not officially diagnosed until 1991 by their doctor in Ajax, Ont. "I used to take my kids back to the river east of Londesboro a lot to check out the wildlife and that's where we were bitten," Biesinger said. Like Jerome, Biesinger sought out specialized help outside of the area when local doctors had no answer. The family went through an internal specialist in London, a psychologist and many others before reaching a diagnosis. And while a series of antibiotic treatments have made Lyme more manageable, Biesinger finds himself depending on a number .of coping strategies to deal physically, mentally and emo- tionally. "One of the chronic problems is Lyme arthritis, which attacks all joints in your body. As long as I keep moving I'm okay, but if I sit still too long I really seize up," he explained. "Memory is also an issue. If 1 don't write things down I forget, so I have a notebook with me all of the time." As for his daughters the oldest Aliecia has experienced difficulty with fatigue and prema- ture births of her three children, while Uneeta endured vision problems as a child. Both Biesinger and Jerome agreed that it is a common misconception that Lyme disease does not exist in Huron County. Documentation has also been a challenge. Biesinger said his attempts to get on the Ministry of Health reg- istry three years ago were successful, but his name disappeared off the list just six months later. "The first time we went to a Lyme Disease Association of Ontario meeting there were only 27 cases on the provincial registry, but over 150 people showed up to the meeting saying they were diagnosed," he added.