Today, Christine Dickau is dressed for success. Her hair is neatly groomed, her makeup has been carefully applied and her outfit is spot on. Today is a good day. Only the watchful eye would notice her apparent difficulty in rising from her chair or her shaky mobility as she cautiously readies to exit the coffee shop and make her way to her car. Such is life with Lyme disease for the 35-year-old mother of two young children: a careful gauge of how much she will need to walk to get through a day and her ability to manage the chronic pain and discomfort that accompany her like a shadow. "I don't want anyone else to ever end up like me," she said through tears, emphasizing her wish to see awareness about the tick-borne illness spread more quickly than the migratory birds that appear to be carrying the blacklegged ticks (also called deer ticks) with the Lyme-causing Borrelia burgdorferi virus over borders and into backyards. May is Lyme Awareness Month. "The last five years have been hell ... right now my goal is just to be a functioning person. If I can walk to the park with my kids and not have to take a two-hour nap, that's a win." Once upon a time, Lyme disease was believed to be a rare illness that was only caught by hikers in the deep woods in areas in the Northeastern U.S. In recent years, improved testing in the U.S. and Europe for Lyme - which becomes chronic if not caught and treated early through six weeks of antibiotics - has brought to light scores of people living with a myriad of symptoms mimicking diseases like fibromyalgia, chronic fatigue and multiple sclerosis (MS). Celebrities including Avril Lavigne, Alec Baldwin and Ben Stiller have surfaced in recent years as awareness about the disease and the growing diagnosed populace continue to be reported to the Center of Disease Control in the U.S. and to Health Canada. The Lyme community maintains that Lyme disease continues to be vastly under reported. "Health Canada has admitted their numbers are drastically under reported - they have said numbers are at least threefold of what they have got ... we suspect it's much, much more than that," said Jim Wilson, director of the Canadian Lyme Disease Foundation (CanLyme). According to Health Canada, there were 992 reported cases of Lyme in 2016. In 2009, there were 144 reported cases. Canadian test kits for Lyme have been criticized by the community as being inadequate - as they do not test for many strains of Lyme and result in false negatives. According to CanLyme, this has caused many people to slip through the cracks with little choice but to turn to alternative, often out-of-country and usually costly naturopathic or antibiotic treatments, as most Canadian doctors traditionally wouldn't risk their licenses to administer. If caught early enough, short-term antibiotic treatment is usually effective. Many people are unaware of having been bitten, however, as telltale signs such as the "bullseye rash" are not always present in the affected. Over the last five years, the Cochrane Eagle has featured various Cochranites living with Lyme. Their stories are similar: a wide range of symptoms including almost debilitating mobility and almost always chronic pain. Dickau has lived the latter for much of the last 20 years. Initially bit by a tick at age 14, her health took a sharp decline soon afterwards, including years of seizures and a diagnosis of epilepsy. After 12 years of health anomalies, her seizures abruptly stopped and life seemed to gain some semblance of normalcy. Today, Dickau has learned that her Lyme went into remission and remained this way until a second tick bite five years ago following two difficult pregnancies to bring daughter Laken (now eight) and son Nathaniel, 6, into the world. It was a dog walk in her community of Heritage Hills that earned her second tick bite - discovering the parasite on her leg in the middle of the night. Within three days, she was hit by a sudden unbearable pain behind her left eye. Rushing to the doctor, the initial belief was that she had detached her retina. This proved to be wrong and led to a diagnosis of MS - a common misdiagnosis for people with Lyme. To this day, she remains legally blind in her left eye with a throbbing, relentless pain and nerve damage along the right side of her body. Her weight dropped to an all-time low of 76 pounds. "It had completely crippled me where my husband had to carry me up and down the stairs to our bedroom," she said, adding that her husband, Dan, had to work all day while she tried to manage looking after their two very young children. "I was at my prime five years ago, running races, and now I can't go grocery shopping." It was not until three years ago when a friend suggested that she should get tested for Lyme disease. A initial negative test prompted her to try again, and she sent her blood work to the Igenix Lab in Palo Alto, Calif., which came back with a faint positive. Further work with Calgary naturopaths and doctors resulted in sending her blood work to a lab in Germany. Her test came back testing positive for a strain of Lyme native to that part of the world and 13 co-infections, presumably spread by migratory birds. For the last two and a half years, she has done rounds of antibiotics and is hopeful that her Lyme will ease into remission. She has also done extensive naturopathic, dietary and supplement therapies during that time frame. Each day, she walks around with around 70 per cent blindness in her left eye; full deafness in her left ear and 60 per cent in her right ear (she wears hearing aids full time); severe exhaustion and shaky mobility, where she is supposed to use a cane full-time; brain fog; and a compromised immune system. Her pain is chronic and often debilitating. Her hope is that awareness will continue to inch the movement forward, where no Lyme sufferer will be shunned by the medical community or forced to self-fund treatment. Wilson said anyone who believes they may have Lyme disease should reach out to the foundation, where they can provide further direction, testing info and support info on Canadian clinicians who will treat Lyme. Visit canlyme.com for more info. Next week: Cochrane mother and daughter both recently diagnosed with Lyme disease.
