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The Chesterville Record, December 23, 2008 Record Staff Lyme disease can masquerade as multiple sclerosis and other neurological disorders, as Dunbar resident Leslie has learned during an ordeal lasting over 12 years. Leslie believes she contracted the tick-borne disease while she was at her cottage near Gananoque in the 1000 Islands area, where Lyme is reported to be endemic. "That's the same time I was diagnosed with Multiple Sclerosis (MS). But I suggest it wasn't MS, it was just Lyme," she told The Record. Her first treatment was a drug called Copaxone, to which she had an allergic reaction. She was then treated with an MS medication called Avonex for approximately a year. "They didn't do me any favours. When you take any of these and have Lyme, it suppresses the immune system. It lets the Lyme go crazy," she said. Until two years ago, her "MS" was fairly quiet. She was initially diagnosed with the more common symptoms including optic neuritis, where she had no vision in her right eye, experienced dizziness and fatigue and plaques showed up on an MRI. Then Leslie developed a rash on her face and neck, that she later learned were papules. At the same time, she had a second bout with neuritis in her left eye and developed an "ataxic" or uneven gait, along with ataxic speech. "My balance was not the best. I couldn't do stairs because I didn't have the strength. I had ataxic speech and I had cognitive problems. I couldn't even look up something in the phone book." she explained. Leslie knew she was not experiencing normal MS symptoms, so she researched the Internet and found the papules were from a co-infection called Bartonella. "I figured I had Bartonella and MS. Boy was I wrong!" she said. After going from doctor to doctor, she finally found a physician on the Internet who could correctly diagnose and treat Lyme disease. "Dr B", as Leslie calls him, sent a test to IGeneX, a clinical pathology lab in California and the test came back positive with many bands. Until then, in Canada, she had received five negative "Elisa" tests and one indeterminate test for Bartonella. "Dr B started me on antibiotics. It was a slow, long crawl to health, but I responded favourably. That's pretty remarkable, as my neurologist last said that my MS had gone into the progressive phase, which doesn't get better." For the last two years she has been on antibiotics. During the last five or six years, she has not taken any treatment for MS. Leslie blames the Canadian tests, which only determine one strain, when there are over 200 strains of Lyme disease. "This test is referred to as an antique. It's very sad as our pets are getting better care than us. They have an accurate test and are being treated accordingly. If you have any doubts, ask a vet. They are quite aware it's here." she said. Leslie now counts herself lucky that she has found a doctor who listened to her and treated her. She has monthly blood tests now and sees the doctor every two months. One blood test showed her iron was low. "I am so lucky, because so many have to go to the US, paying out of pocket, losing their homes and livelihoods. Doctors are being persecuted for treating long-term Lyme disease. This is very sad as people are suffering needlessly and some are dying. Yes, you can die from Lyme. Children are also being infected which makes me wonder about the rise in pediatric MS." she stated. Fortunately, Leslie's MS treatments were covered by the Ontario Trillium Foundation. Patients who have to go to the US for treatment of chronic Lyme disease are not so lucky, since OHIP will only cover two or three weeks of antibiotics. She does not remember when the tick bit her, because they are as small as a poppy seed. They inject a numbing agent into the skin, before they bite and suck blood. Under 30 per cent of Lyme victims develop the telltale "bull's eye" rash. "They say the first symptoms you get after being bitten are like the flu, so how would you know?" she asks. She feels she is about 80 percent "back to normal", but thinks she will have continuing residual effects and worries about lasting plaque scars. She had to learn to walk, do stairs and talk all over again, and is back driving. "I'm coping," she says. Leslie would like people to become aware of the dangers of the disease and misdiagnoses through inadequate testing. She is campaigning for better testing, diagnosis and treatment through members of the legislature and members of parliament. "My doctor said 97 per cent of the tests are inaccurate from what he has seen in his practice. He's cured an ALS patient and an Alzheimer patient with antibiotics because they had Lyme," she said. According to a fact sheet on Lyme disease, there are estimates of three million cases in the US over the last three decades, with most cases in states bordering Canada, yet Canada reports only a few hundred cases. Many Lyme patients are first diagnosed with other illnesses such as arthritis, chronic fatigue symdrome, lupus, Crohn's disease, Reynaud's syndrome and psychiatric disorders. Low-lying vegetation, brushy, overgrown grassy habitat and wooded areas can harbour ticks that carry the disease. For more information, visit www.canlyme.com TOP