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Lyme Disease Association of Alberta starts support group in Red Deer

Patients and caregivers meet

A grassroots organization advocating for Albertans with lyme disease is now running a support group in Red Deer.

The Red Deer support group, in association with Lyme Disease Association of Alberta, began holding meetings in the summer. Support groups also run in Calgary and Edmonton.

Jason McInnis, association board member, said the association’s membership includes 300 to 400 Albertans with suspected or confirmed cases of lyme disease. Often called the great pretender, lyme disease is mistaken for many other diseases like multiple sclerosis, chronic fatigue, fibromyalgia, and others.

“Lyme disease isn’t at the top of the list of suspects. By the time (doctors) get to it, it’s months, if not years, into this illness,” said McInnis, of Calgary.

Lyme disease is transmitted by the bite of an infected tick. Symptoms can include fatigue, fever and chills, headache, muscle and joint pain, spasms or weakness, numbness or tingling, swollen lymph nodes, skin rash, cognitive dysfunction, dizziness, nervous system disorders, arthritis and arthritic symptoms, and heart palpitations.

Since 2013, the non-profit association has been working to raise awareness among the medical community and the public.

Last year the association paid symposium fees for three doctors from Calgary and one doctor from Grande Prairie to attend a medical symposium in Banff put on by the International Lyme Associated Diseases Society.

“(Lyme disease) has not been studied a lot in Canada, but there’s some good research coming out of Mount Allison University right now. The Lyme Disease Association of Alberta is providing some financial support to help keep that research going. The questions are starting to be asked in Canada.”

McInnis said a lot of people struggle to get a firm diagnosis in Canada and often end up going to the United States for both diagnosis and treatment.

He said there’s not a lot of education for health care staff on lyme disease within Alberta’s very busy health care system.

“There has been some progression on a case by case basis of people getting better treatment. I wouldn’t say it’s been a province-wide improvement.”

His wife, Susan, became infected with lyme disease in 2007.

“It was almost like she was in a zombie state, not able to pay attention to what’s going on, confused, tired, sore. That was constant, day in, day out, for the longest time.”

He said after three years of working with doctors in Alberta, she was diagnosed and treated in the U.S.

“That’s not to say her doctors weren’t sympathetic to her plight. They just didn’t know what to do with her, or were limited to what they could do with her based on the laboratory information they had.”

The next Red Deer support group meeting will be held Oct. 27, 6:30 to 8:30 p.m., at Red Deer Museum and Art Gallery, 4525 47A Ave., which is wheelchair accessible.

Visit www.albertalyme.org.

szielinski@www.reddeeradvocate.com