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Lyme Disease symptoms vary from person to person. (lymes disease lyme's disease lime disease limes disease)
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Free at last
Woman's 18-year struggle with affliction she couldn't catch here
Friday, October 5, 2007
Edition: Final
Section: News
Page: A1
BY MATTHEW HEINDL, TODAY STAFF
Sheila Callan suffered for 18 years of her life with Lyme disease, though doctors failed to diagnose it, even after the infamous bullseye rash appeared on her face. Doctors were told that there is no Lyme disease in Alberta, and still believe this today, even as the bacteria appears more often.
Callan, after being told nothing was wrong with her or that no diagnosis was possible, was finally treated in April for Lyme disease in B.C. and continued a second round of treatment two weeks ago.
It's difficult to believe that the 46-year-old has ever been ill when you meet her now, healthy with a serious disposition. Six months ago, Callan was wheelchair bound, shaking uncontrollably, losing her vision and falling further into illness.
"Even my husband said afterward he was surprised I would live past Christmas (2006), because at that point I was spiraling so far down," said Callan. "And I think if I hadn't found this -- I don't know how much longer I would have lived."
She was able to receive treatment for the disease only by diagnosing herself, and then consulting a specialist in B.C. and taking a test in the United States.
Lyme disease is the most common disease carried by ticks in the northern hemisphere, and the organism in our region (borrelia burgdorferi) is only recognized in one kind of tick (Ixodes pacificus).
This tick does not colonize in northern Alberta because its unable to survive the winter. Lyme disease is predominately recognized in the northern U.S. and in central Europe. For this reason, the majority of medical professionals in Canada believe lyme disease cases are rare, and if they do exist, are not endemic: caught not here, but on trips outside the country.
In 1990, Shiela Callan was a young active mother starting a family in Fort McMurray with her husband Mel and two little girls, Audrey and Sarah. She took an interest in astronomy that developed into a minor obsession and in her free time. It left her tromping through the forests several times a week.
She became the president of the Fort McMurray Astronomical Society, taking an especially strong interest in meteor observation, which involves lying very still on one's back for long periods of time. Ticks prefer to climb three feet above the ground in grassy fields, "and I'm pretty sure that's where I got bit," she said.
Nearly a year passed without Callan leaving Fort McMurray when a strange circular rash appeared on her head, a classical symptom of Lyme disease that usually appears a few weeks after the disease is contracted.
"Once I got that rash, I never had my health back again," she said.
Other textbook symptoms of the disease started forming, with arthritic pain and flu-like symptoms, followed by severe vasculidous, or inflammation of the interior brain. The disease moved into her heart, and she soon suffered a stroke.
In 1991, within a year of the rash, Callan was sent to the University of Alberta Hospital in Edmonton for 10 days because so many organs and systems were failing. During that time, she was given a battery of tests and specialists were paraded in to "take a crack at it" and none were able to diagnose it. She finally asked the head physician to explain to her what was going on, and he replied that there was nothing physically wrong and that she would do best to stop obsessing about her health.
He recommended that she take up a hobby. Callan immediately checked herself out of the hospital, a few days before her 30th birthday.
This was the first time that Callan was told her case was hopeless or nonexistent, something that happens often to Lyme disease patients, and she is still visibly defensive about her condition.
Callan provided Today with many of her personal medical records and tests to prove her case. She is more knowledgeable about the disease now than most physicians in Alberta.
"If they caught it then, it would have made such an extraordinary difference in my life," she said. At one point her family physician, who she said was supportive throughout, explained that some people as ill as she was are never diagnosed, and that it may be the best thing to try to accept it.
"And I looked at the doctor and said 'yes, that is a sensible thing to do,' but I never gave up," said Callan. She doesn't blame the doctors, though, as they "have to work with the tools they are given."
Doctors in this region were not educated very much at the time, with no evidence of ticks that carried the disease or any reported localized case, "and never any deep concern for Lyme disease in this area," said Dr. Alan Nicholson, the Medical Office of Health for Northern Lights Health.
"I'm delighted for her, but getting Lyme disease here 20 years ago -- there is no evidence that the ticks that carry it were here," said Nicholson. "It's really doubtful in my own mind whether this is a real entity acquired 20 years ago."
For the next 15 years, Callan's decline in health followed a pattern, with the symptoms temporarily subsiding and then returning with a vengeance. Constantly in a wheelchair or with forearm crutches, at times she would have tremors through her body, her head and hands shaking, her vision clouded and a burning sensation would cover her body, and her throat muscles would contract while eating, causing her to choke often and take constant chest infections. She visited more than 30 specialists, all who discounted her having symptoms that fit into their specific fields, but no one could provide a holistic clinical view of her condition.
During most of the time Callan still continued to work and raise her family, and was the valedictorian of her Keyano College graduating class, though "it was extraordinarily difficult."
In January, while routinely typing her symptoms in an Internet search engine, she came across a link for Lyme in Canada, and found a match for her symptoms.
In April Callan flew out to visit Dr. Ernie Murakami, one of the very few Lyme disease specialists in Canada. Murakami believes in sound clinical diagnosis as the only way to testing certainty, but has recently come under fire from other B.C. doctors that he is diagnosing too many cases of Lyme disease, generally more than the B.C. government admits to having. But he said cases like Callan's are very common.
"The average number of patients with previous specialist care ... would see about 10 specialists at the minimum to try to find out what they're problem is, and a lot of them are told to see a psychiatrist," said Murakami. "A lot of them are on antidepressants, and many are suicidal when I first see them."
After a clinical diagnosis and a series of tests -- three Canadian tests that came up negative -- an American one, the Western Blot, turned positive.
Callan began taking the most effective in-vitro antibiotics available in April, which left her extremely ill for a few weeks. They're known to cause liver failure.
When Lyme disease bacteria is killed it releases a severe toxin, and the more effective the treatment the more ill a person becomes.
But she left her wheelchair four months ago, after intensive physical therapy, and is returning to the way she remembers being nearly 20 years ago.
"The extraordinary thing is I went from being a woman who ... didn't know how much longer I was going to live, to the person you see in front of you with only four months of antibiotics."
Since recovering and without speaking out much, she said people have been approaching her to ask about their own conditions or those of families, such as atypical presentations of multiple sclerosis. But she tells people to see their doctor and be persistent in explaining their symptoms."
"I made some assumption that people would automatically be warned, and I didn't hear anything happening," said Callan.
"My hope for (this) article is that its going to help people who have Lyme out there, or who have family members with Lyme, get well. And also educate the doctors, because the doctor's hands are as tied as the patients at this point because they're not being given the tools they need to help them."
--
Matthew Heindl
Reporter
Fort McMurray Today
8550 Franklin Ave.
Bag 4008
Fort McMurray, Alta.
T9H 1L6
Ph: (780) 743-8186
fax: (780) 790-1006
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