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Living with Lyme disease in Canada

by Mina Mazumder April 5, 2016
Living with Lyme disease in Canada

Concordia student Shayna Dwor has to travel to Germany to get treatment for Lyme disease

Shayna Dwor is a third-year design student at Concordia. In her free time, she enjoys swimming and yoga. She describes herself as a light-hearted person. Despite this, the young student is suffering from Lyme disease. In order to treat it, she must fly to Germany because our Canadian health system does not categorize it as a chronic illness, according to Dwor.

Living with Lyme disease is a constant struggle. Some days you wake up and feel alright, and the next day you feel like you’ve been hit by a truck. Photos by Marie-Pierre Savard.

Living with Lyme disease is a constant struggle. Some days you wake up and feel alright, and the next day you feel like you’ve been hit by a truck. Photos by Marie-Pierre Savard.

“[It] makes me feel very disappointed in the Canadian health system,” Dwor said. “We are a country that is recognized for one of the best health care [systems], and right now I feel ashamed to be Canadian and having to travel [for treatment],” she said. The treatment will cost about $20,000.

It all started five years ago, when Dwor travelled to Port Colborne, in southern Ontario, where she was bitten by a tick. She said she had extreme symptoms for over three years, but she was only officially diagnosed with Lyme disease in May 2014.

“I was bit on this soil, and yet, I have to travel internationally to get treated,” she said.
Brendan Fillar, a wellness advisor who was successfully treated for Lyme disease and now works for Lyme and Cancer services in Germany, said that Lyme disease is caused by a bacteria called Borrelia burgdorferi and is spread through the bite of infected ticks or other insects carrying it. The illness can affect any part of the body, such as the brain, nervous system, muscles, joints and heart, and may even be life-threatening, said Fillar.

Living with Lyme disease is a constant struggle. Some days you wake up and feel alright, and the next day you feel like you’ve been hit by a truck. Photos by Marie-Pierre Savard.

Living with Lyme disease is a constant struggle. Some days you wake up and feel alright, and the next day you feel like you’ve been hit by a truck. Photos by Marie-Pierre Savard.

Annick Lantenois, a nurse at Info-Santé Québec, described the bite’s appearance similar to a bullseye. Some of the symptoms include fever, headaches, fatigue, loss of appetite and joint and muscle pain. The diagnosis of this disease is done by a blood test and biopsy of the infected skin, she said.

“Because of climate change, deer ticks are moving up north. It affects people in mostly southern areas of Canada, in particular southern Ontario,” Dwor said.
Doctors prescribed her an antibiotic called Doxycycline. In Canada, it’s used as the protocol antibiotic prescribed for 30 days to treat early Lyme disease, but it did not work for her, Dwor said.

Dwor said the disease has changed her life completely over the past three years. “It has taken a big portion of my life and stability. It really affects your muscles and spine,” said Dwor. “You wake up one day feeling limber, and the next morning I literally feel like I’ve been hit by a truck and I can’t move.”

She said she visits the emergency room at least once a month to treat a complication or infection. “I used to play so many sports and now I can just do simple swimming and maybe yoga because my muscles are so tender. It is a very, very scary disease,” she said.

School can be particularly difficult as Dwor gets exhausted easily. “Sitting for a very long time is very uncomfortable, I have to get up every 15 minutes to move and stretch.”

She said one of the hardest things that anyone with Lyme disease faces is doctors denying the severity of the disease and how she has to prove the pain is not in her head. Dwor said doctors have told her to take an Advil when she was swollen. “The mentality of the Canadian health system should be changed and [they should] understand that this is a disease instead of pushing this aside,” Dwor said.

Dwor learned about the possibility of treatment in Germany from a 19-year-old girl, whom she had met in a clinic in St-Catharines, Ontario. She said the girl came back from Germany feeling like a new person and highly recommended the treatment to Dwor.

Fillar said that at the Lyme and Cancer services in Germany, Whole Body Hyperthermia is offered in three different clinics. It is the recommended treatment and the success rate is very good, he said. Additional adjunct treatments include detoxification and antimicrobial therapy. “Most people that we have worked with have found sustained improvement in their symptoms and quality of life,” Fillar said.

For anyone else battling Lyme disease, Dwor recommended finding an outlet to cope, such as listening to music, meditating, eating healthy and being close to loved ones. “This illness is not who you are,” Dwor said.

She hopes to bring awareness to this disease so others can protect themselves from it. “It is important to wear protective clothes and to spray yourself [when going to the woods].”

Dwor has raised $10,000 so far and her end goal is to raise $30,000, which includes the flight to Germany and the treatment during her time in Germany. Her goal is to fly to Germany by the end of May or early June.

After this treatment, she said, “my hope is that I am better, very solid, strong.”
Dwor is hosting a fundraising comedy show event on April 23 at The Sporting Club at 8 p.m. The cost is $10, and all proceeds go towards her treatment. For more information, visit Shayna Dwor’s GoFundMe page at gofundme.com/lymeisacrime

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kristinebangert April 6, 2016 - 05:39

Best of luck Dwor. Never loose that fighter within you, for you are young and will win the battle of Lyme. I don’t know why people and the medical community continue to hurt people who are already hurting so much. People don’t want to be sick, especially ones that were happy and productive before. People just love to judge other people. One day the ones judging will be the one in pain. What comes around goes around. I pray for a compassionate and kind world .

Are you frikken kidding! April 7, 2016 - 16:22

Completely agree with the disappointment in the Canadian Medical system. My wife was diagnosed with Lyme 3 years ago and after begging in Canada to get anyone to help her, we have had to go to see a specialist in Seattle. After years of watching her suffer, we have finally started to see improvements and she is about 50% better than she was a less than a year ago. We finally have hope for a light at the end of the tunnel.
The only thing we have received from the Canadian Medical system is derision for trusting an “American” with our health… Combine this with the over $100,000 in lost income and medical expenses and… well you get the picture. It has been a real experience to say the least.
I wish Shayna nothing but the very best of luck with this disease. Having seen first-hand what it can do to a person it can be a truly tragic thing…

And shame on a medical system that chooses to ignore and politicize a disease that can be so devastating.


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