Smiling is something most of us take for granted, but for Shayna Jenny Van Dyke, the possibility of losing it is something she thinks of daily. She said when she’s having a relapse with her Lyme disease; numbness in her face is the first sign.
In 2009 Lyme disease became a reportable illness in Canada, and with cases doubling from 2009 to 2011, it has become the fastest growing vector borne illness. And for Canadians that seek treatment, doctors only recognize one out of a possible 300 strands, forcing them to treat and diagnose their illness in the US.
Similar to other diseases like Parkinson’s, MS, Azheimer’s and ALS, life can be a ritual of suffering. In Shayna’s case, the Lyme attacks her central nervous system that in turn affects her face and other basic muscle functions in her body, similar to Bells Palsy.
Shayna’s had late stage chronic Lyme Disease for nearly 30 years, but wasn’t diagnosed until 2010.
“In 2005 I woke up one morning – I thought I had a stroke,” she explains the first time she had the smile ailing symptoms. “I looked like Jean Chrétien.”
For years doctors told Shayna she had nothing wrong with her. Diagnosing her with a plethora of other ailments, the medications that followed compounded the problem.
“I stood in front of the mirror for hours trying to smile,” she said. “The most devastating thing about this disease for me has been losing my smile.”
She was only able to receive a diagnosis in the US from Dr. McShayne. When she was on the correct antibiotics her life changed, and she retained her smile. She even started doing photography and writing stories for The Cambridge Citizen.
“I bought a camera, started playing guitar,” she said. “I was able to enjoy life.”
She believes it began with a camping trip with her husband that left them both sick with some flue like symptoms and a rash back in 1985. Shayna’s rashes continued along with chronic headaches. A year later she said she spent 300 of the 365 days of that year in the hospital feeling absolutely terrible. Doctors couldn’t find anything wrong with her.
Lyme is known to be contracted through the deer tick, a small little bug, no bigger than the period at the end of a sentence, which attaches itself to the skin, sharing its blood. The ticks travel on small rodents and graduates up to bigger animals. Found in wooded areas ticks sit atop blades of grass with the intention of finding a victim. In some cases, a large red ring surrounds the part of the body that has been bit, and prompt treatment with antibiotics can eradicate it. If the latter is overlooked, it can become a lifetime, chronic problem.
“What we need is Canadian treatment and we needed it yesterday,” explains Wendy Woodhall, who founded WRLD, a group for people in the Region of Waterloo who have Lyme. She believes the Public Health agency in Canada is overlooking most, if not all cases.
“The MMP’s need to be convinced that this is a real problem,” said Woodhall, explaining how to change the law as to how doctors recognize and treat Lyme. She’s written letters to MPPs and advocated for Lyme disease in Queen’s Park.
Ontario is seeing an increase in cases of Lyme disease according to a physicians update in June 2011 issued by the Region of Waterloo Public Health. The same document also says that the Public Health Agency of Canada cautions health care professionals of the use of private labs in the US, “As these ‘for profit’ laboratories may not employ scientifically validated tests. “
Jenna Martin has to travel to the US for antibiotic treatment costing her $20,000 a year. She and both of her kids have Lyme.
“Doctors at Sick Kids told me my daughter had anxiety in the physical form. She now has permanent brain damage,” she said. “My kids have never known what real health is.”
She agrees that her and her kids can only live out their lives if they have the treatment, otherwise they can’t get out of bed, or end up in the hospital.
“My kids would come home to me passed out on the floor,” she said.
Before Martin stared going to the US to treat her kids, she went to Dr. Baghdadlian, an infectious disease specialist in Toronto, who has since quit treating Lyme, leaving many patients in Canada without treatment. He was reported by another specialist for treating the illness because he didn’t follow the correct procedures of diagnosis.
Dr. Baghdadlian also treated Naomi, a 40-year-old who now has to use a walker from the crippling effects of Lyme.
“It’s disheartening when you don’t know who to trust, especially your own doctor,” she said.
Naomi loves the outdoors, and is big on canoeing, hiking and camping. She admitted to camping at Long Point on Lake Erie before the disease, a place that is recognized as a hot spot for deer ticks and Lyme.
She now suffers without any treatment.
“I did really well after the antibiotics,” she said. “But last week I couldn’t get out of bed.”
Shayna had the same problem, and it took the tenacity of her own research to find out her real illness. Naomi’s husband had to do the same – Martin too. If it wasn’t for their keen research, the illnesses they deal with would be misdiagnosed and mistreated.
Shayna’s daughter currently has Lyme and can’t afford treatment. She fears her grandchild will have it too, as she believes she gave it to her daughter. Lyme can be given to a child in the womb according to research done by the Lyme Disease Association of Ontario.
Many have been advocating for more accurate treatment, like British Columbia MP Elizabeth May. She started a petition in 2012 calling for a national strategy with bill C – 442, the National Lyme Disease Strategy Act.
With healthcare a provincial affair, the solution will have to come from the decision of MPPs and the Ministry of Health.
However, the problem will become national with an estimated 80 per cent of Canadians being affected with Lyme by 2020.
Tags: Bells Palsy, canada, home, Jean Chr, Jenna Martin, MS, National Lyme Disease Strategy Act, ontario, Public Health, Region of Waterloo, Shayna Jenny Van Dyke, something, Toronto, US, Wendy Woodhall, WRLD