collecte section Bourgogne

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From Canada: The disease itself isn't "rare," but unfortunately the proper diagnosis of it is rare.



Woman’s mystery illness leads to rare Lyme disease diagnosis

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Sitting in a dark room at Little House Society in Tsawwassen, Karen Marchand speaks slowly and with great apparent effort, trying desperately to concentrate on articulating each word.
She is describing the last five years of her life, one racked with excruciating pain and confusion over how she contracted a rare and seldom talked about disease.
Marchand has Lyme disease, a debilitating pathogen transmitted by infected ticks, usually found on animals like deer and small mammals.
In 2009, she had a successful 24-year design business that was helping with the planning and construction of the new Little House building.
“During that process I started to develop signs of Lyme disease, even though the first symptoms began manifesting two years prior,” said Marchand.
Those symptoms began with difficulty focusing and remembering, and pain in her muscles and joints.
At first she went to Delta Hospital but tests came back negative. Marchand remembers the experience with distaste.
“You spend five or 10 minutes with a doctor and they just want to give you a pain killer and send you away,” she said.
It wasn’t until she started seeing a naturopathic doctor the year after who thought she had infections related to Lyme called Bartonella and Babesia. These are co-infections carried by ticks that transmit Lyme.
Shortly thereafter, a trip to California confirmed her disease at a medical facility with rigorous testing that Marchand says just isn’t available in Canada.
Since then, Marchand says she has spent $35,000 a year treating up to 40 symptoms of the disease that include excruciating head pain and neurological myalgia.
She was forced to close down her business and is often bed-ridden because her brain simply can’t function.
“I’ve had days when I got up and I look at the coffee pot and I don’t know how to use it,” said Marchand.
Jim Stimson, president of Little House Society, said he’s appalled at the decline in her health.
“It’s been personally very difficult to watch Karen deteriorate and not a damn thing you can do about it except show support and friendship,” he said.
Stimson wants to bring awareness to Lyme disease and its devastating consequences by hosting a seminar on May 30 at Little House (5061 12th Ave.) beginning at 6:30 p.m. Guest speakers include Dr. Ernie Murakami, president and founder of the Murakami Centre for Lyme Research, and Gwen Barlee, policy director for the Wilderness Committee in Vancouver and a Lyme advocate.
Marchand wants to offer other people information on finding help outside of the medical community she says failed her. Like so many others, she had never heard of Lyme before her naturopath talked to her about it.
“I don’t know what I thought because I didn’t even know how bad it was going to be,” she said.
To learn more about Lyme disease view the documentary “Under Our Skin” found on YouTube.