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Lyme disease: A patient’s struggle for diagnosis
Every morning, for eight years, Louise Roderick woke up asking herself the same question.
What is wrong with me?
With each passing day, the South Surrey woman’s health declined. There were times she was unable to speak or walk.
“I became a shell of the person I was,” she said. “It’s like something came into my body and took me out and moved me over.”
After countless doctors’ visits, the end of Roderick’s agonizing search for answers came last year from a U.S.-based medical lab, which diagnosed the 52-year-old’s ailment as Lyme disease.
“I had read about it, and I thought, this is it. It all fits. But I was tested in Canada and it came back negative,” she said. “My doctors wouldn’t even consider it.”
Described as a tick-born infectious disease caused by at least three species of bacteria, early symptoms of Lyme disease can include fever, headache and depression. If left untreated – or inadequately treated – patients can develop severe and chronic symptoms in many parts of the body, including the nerves, eyes, joints and heart.
For Roderick, the devastating impacts of Lyme disease began after a walk with her husband, Rod Baker, and dog in Elgin Heritage Park in 2004. She got a bug bite on her head. The bite became a large, red rash, followed by a “funny feeling” in her brain and an inability to identify words and letters and even to speak.
Adding to her frustration was the repeated dismissal of symptoms from health professionals, Roderick said. With each new doctor, she received a similar response, often being diagnosed as high-anxiety or a hypochondriac.
“I was going doctor to doctor, saying ‘please, something is so terribly wrong with me,’” she said.
“It was constantly brushed off. They’d say, ‘you’re hormonal, you’re high anxiety…’ And I would say, ‘yes I am, but this all happened because there was something wrong with me. It’s not the other way around.’ I would be begging them to take me seriously. There was something so wrong with my brain.”
According to Jim Wilson, founder of the Canadian Lyme Disease Foundation, Roderick’s experience is not unusual.
In fact, he said, he experienced many of the same issues decades ago when trying to diagnose his ailment, pointing to a lack of knowledge by doctors – and what he views as indifference.
“I was sick for three or four years. I was a mess by the end of it,” Wilson said. “Mentally, it was like my brain had left me.”
He recalled his breaking point in 1992, when at age 38 he determined he was suffering from dementia.
“It was horrifying. I got in my car and, hours later, my wife found me sitting there. I had no idea how to put the key in the ignition. It was the most frightening day of my life.”
Wilson’s wife began to research his symptoms, when she came across information about Lyme disease. She urged her husband to see a doctor.
Despite a “distinct” bull’s-eye rash on his naval, Wilson said the doctor told him there is no Lyme disease in Canada.
“He wouldn’t even consider diagnosing me,” Wilson said.
The pair eventually found the New York Lyme Boreal Society, which led them to a doctor who confirmed what they suspected – late-stage Lyme disease.
It was Wilson who finally directed Roderick earlier this year to Steveson-based doctor, Eric Chan, who sufferers describe as “Lyme-literate.”
Under Chan’s treatment, Roderick said her health is only now starting to improve. But because of the length of time she went untreated, she does not expect to ever recover fully.
“It’s going to take a while for me to get my body and mind right,” Roderick said. “Even when you start getting treated, you’ll never be 100 per cent after being diagnosed in the late stage. You hope to God you can get up to 80 or 85 per cent. My doctor said he could help me get me back to 90.”
Now, Roderick hopes to increase awareness about Lyme disease so that others won’t have to go through what she endured. Her next steps include working with Wilson’s foundation to lobby the federal government to reform Lyme-testing protocol.
Currently, Roderick said, the Canadian test only picks up on a single strain of Lyme disease.
“That’s why I tested negative all those years ago. But I don’t have the energy to be angry at the doctors who turned me away. When I get better, I want to turn this around,” she said.
Fraser Health directed Peace Arch News to the B.C. Centre for Disease Control for comment. Efforts to connect have been unsuccessful.