After contracting Lyme disease

After contracting Lyme disease

‘The great imitator’

Lyme disease sufferers raise awareness, medical response uncertainty

Natasha Wood is 18 years old and should have graduated from high school last year. But the constant illness she experiences has kept her at home, delaying her dream of going to university.

Her father Shawn said he still struggles to understand why doctors can’t treat his daughter for Lyme disease.

“We take our daughter to the doctor when she’s sick to find out what’s wrong with her, and nobody says anything. We take our dog to the vet and the first thing the vet says to me… is ‘Do you want your dog vaccinated for Lyme disease?’ ”

After visiting specialist after specialist, looking for answers for her symptoms – fainting, exhaustion, pain, hypersensitivity, cognitive issues and more – Natasha now gets her treatment from a naturopath, who prescribed long-term antibiotics and a variety of supplements to manage her symptoms.

Her family is thrilled to find treatment, and thankful that Shawn and Natasha’s mother Sonya have health benefits that cover some of the costs. They said many people with Lyme disease are often forced to pay out of pocket to travel to the U.S. for treatment, or to cover visits to a naturopath and supplements that aren’t covered by the provincial system.

But while seeing a naturopath means added expense, the family is thankful that naturopaths don’t fall under the same rules as provincial doctors.

“I worry about pressure from the province. There are lots of stories of people across Canada whose doctors are forced to stop treatment,” said Sonya.

 

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A homemade video shows a collection of moments in Angela Johnson’s life – photos and clips of her with friends, acting in theatre productions, and camping. But the images rapidly diminish to pictures of lying in hospital beds, videos of her body convulsing uncontrollably, and attempting to walk with a cane as her body shakes.

Angela doesn’t like to watch the video, but posted it online in the hope it will show others the extent of her chronic disease – one she said is often ignored by the medical system.

After more than three years of seeking a diagnosis for a range of symptoms, 25-year-old Angela is being treated for chronic Lyme disease. But for Lyme patients, even a diagnosis is not a guarantee of finding the care they feel they need.

“Lyme disease is such an isolating disease because the medical community doesn’t want to help you – they basically abandon you. Doctors don’t want to treat you – they push you aside to other specialists. And even people around you – you wonder if they even believe what you are going through.”

Lyme disease is controversial in the medical community. Some doctors and their governing bodies cannot agree on appropriate treatment – or whether chronic Lyme, where symptoms last long after the initial infection, even exists.

Spread through tick bites, Lyme disease is often called “the great imitator.” Symptoms vary, ranging from flu-like feelings, chronic pain, respiratory issues, neurological and cognitive issues and many more.

Patients say that false negatives are common in tests for Lyme disease, and a source of frustration for those looking for an explanation for their illness and suspecting they have Lyme.

Common prevention and treatment tips encourage people to look for the “bull’s-eye rash,” a distinctly shaped mark that can come after an infected tick bite, along with flu-like symptoms. Doctors will often prescribe a short course of antibiotics to treat an initial Lyme infection, but many victims do not develop a rash, or do not notice it.

Those who say they suffer from chronic Lyme disease can notice serious symptoms years after an initial infection and many want longer courses of antibiotics.

Angela, despite currently being on an intense treatment of antibiotics, still keeps a wheelchair in her apartment for bad days and can’t yet return to work. She, like many other Lyme patients, said she doesn’t identify the doctor giving her treatment to prevent investigation by governing bodies for non-standard medical practice, such as prescribing long-term antibiotics.

Angela doesn’t remember any bull’s-eye rash. In retrospect, she recalls that in 2010, she began experiencing flu-like symptoms. The otherwise healthy and active 22-year-old began getting infection after infection. Her symptoms got worse. She was in constant pain, her usually clear speech would become slurred and stuttered, she had tremors and numbness and occasionally lost her train of thought. Angela was told by doctors and specialists that she had multiple sclerosis, fibromyalgia, depression and was even told she was suffering from a “mystery disease.”

After watching a documentary called Under Our Skin, about people with chronic Lyme disease, Angela saw similarities in her own health issues. She remembered the untimely death of her dog Chester, who had gone camping with her family in 2010, around the time the symptoms began. Chester had had marks on his skin, which the family wrote off. But Angela remembered finding a strange bug in her home, and realized she had likely found a tick.

The B.C. Centre for Disease Control states that less than one per cent of ticks tested carry Lyme and that in 2012, there were 18 cases of clinical or laboratory confirmed Lyme disease reported (0.4 per 100,000 population). The organization maintains there is a low endemic risk of Lyme disease in B.C.  But south of the border, the prevalence of the illness has recently been noted. The American Centre for Disease Control (CDC) stated in August that while 30,000 cases of Lyme are reported to the CDC, about 300,000 cases are diagnosed yearly.  There is even political support gaining in Canada for finding a strategy for Lyme disease treatment. Elizabeth May, leader of the federal Green Party and MP for Saanich-Gulf Islands, has drafted a private member’s bill calling for a national Lyme disease strategy.

But both Angela and Natasha want to raise awareness that Lyme disease can be contracted in B.C. and help people know what to look for and how to find treatment.

For Abbotsford residents looking to learn more about Lyme disease, an awareness forum will be held at the Cascade Community Church on Nov. 14 at 7 p.m., featuring discussion on prevention, tick removal, symptoms and treatment. Guest speakers are Dr. Ernie Murakami, president and founder of a centre for Lyme research and education, and Gwen Barlee, a policy director for the Wilderness Committee in Vancouver and a Lyme disease advocate.