Canmore resident Sarah Hutchinson doesn’t know exactly when a tick bit her, but she certainly knows it has had a profound affect on her life.
Hutchinson contracted Lyme disease prior to 2008 and the effects of this misunderstood disease took her from being an active, contributing member of the community to someone who could barely sit up or stand and often had to retreat to her bedroom, close the door, put in ear plugs and turn off the light as constant pain, fatigue and neurological issues forced her to stop working and give up all of the activities that she loved.
With treatment, an ongoing course of antibiotics, Hutchinson’s health and quality of life is improving. She’s now able to walk up to a block at a time. She can sit for longer periods of time and, most importantly, she can once again concentrate and read.
“I used to go climbing every spring in California. It would be my best guess that is where it came from because Lyme is quite endemic there and there’s little nymphal ticks that you can’t even see,” she said May 7 during what is Lyme Disease Awareness Month.
Hutchinson lived with the disease for years before she received a positive diagnosis. From the outset, she didn’t have any of what are perceived as the “typical” symptoms of Lyme’s disease: a bulls-eye rash, flu-like symptoms and joint inflammation.
Hutchinson did have inflammation, but it moved throughout her body, so it wasn’t perceived as an indicator of chronic Lyme disease.
In fact, only about 40 per cent of people who get Lyme disease get the bulls-eye rash. Flu-like symptoms and joint inflammation are other “typical” symptoms of Lyme disease, but not all people who contract the disease get those symptoms, as well.
“For several years before 2008, I started to get inflammation problems that were moving around my body and not going away and that are actually indicative of early stage Lyme disease,” Hutchinson said. “I thought I had played in the mountains too much and broken down my body. In 2008, I was struck by severe illness quite suddenly and I had fatigue and concentration problems and severe nerve pain in the bottom of my feet. It was hard for me to stand up and walk across the room. It was like walking on glass. My energy concentration became so impaired I had – I was a practicing psychologist – to quit working,” she said.
About two years after her symptoms first began, Hutchinson came down with influenza and woke to discover she couldn’t move her legs. A trip to the hospital and numerous tests found nothing. The weakness, meanwhile, she felt in her legs spread into her arms.
Weakness was eventually followed by visual hypersensitivity, which made it difficult to look at a computer screen or TV.
It was at this point, a few years after first experiencing the symptoms, that Hutchinson sought treatment for chronic Lyme disease. Tests, including an MRI, had ruled out any neurological basis for her medical problems and all other tests showed nothing. Lyme disease became the only logical explanation, and it was backed up by blood samples she sent to a lab in California.
With treatment, which consists of antibiotics, Hutchinson has slowly begun to heal and become herself again. She still can’t watch TV or look at a computer screen because of the vertigo that causes. She can, however, look at the screen of an iPad mini without difficulty, allowing her to learn Spanish. She can read, sit up and walk short distances. She can even go into a coffee shop for short periods of time, as her sensitivity to noise and stimulation has begun to recede.
“I ended up with so much pain in my spine and glutes that I couldn’t sit up at all and within chronic pain in my whole body all the time. I couldn’t read and had trouble thinking. It was about a year and a half ago when I really hit bottom, but with treatment I’ve been slowly climbing out of that. And now I’m at the point where my spine is a lot better. I can lie on my back, but I still have difficulty sitting up,” she said. “The noise sensitivity has certainly improved and my thinking and concentration has improved a lot. I can read as much as I want now.”
Hutchinson still has a long road ahead of her, but with antibiotic treatment the promise of a full recovery lies before her.
Today, she hopes her experience can be used to inform others so they have the opportunity to catch the disease at an early stage. Lyme disease is treatable. According to the Canadian Lyme Disease Foundation, Lyme disease is “one of the most treatable of chronic illnesses.”
While there is some recognition that Lyme disease can be treated, diagnosis, understanding and acceptance of the disease needs to improve.
“My doctor and specialists that I saw did what they could and should have in trying to rule out everything that my illness looked like,” Hutchinson said. “There were many possible diagnoses and they explored everything. If there’s a change, I would like to see Lyme to be considered as one of the illnesses to look for when the symptom picture is vague, and to look for it early on in such cases, considering the whole variety of presentations of the illness.
“More accurate testing is also needed, with an awareness of the possibility of false negatives, which are especially common in early stage testing. There is promise for all of these things with the passing of Elizabeth May’s bill, which calls for the creation of a national Lyme disease strategy.”
May, leader of the Green Party of Canada and MP for Saanich-Gulf Islands, brought forward a private members bill (Bill C-442) in 2013 calling for a national Lyme disease strategy. The bill, slated for second reading, seeks better public awareness programs, improved prevention of Lyme disease, the sharing of best practices and approach to improved diagnosis and treatment and a push to find a cure.
In an article on her website, May wrote: “It breaks my heart to see families struggle with the costs of going to the U.S. to get treatment for family members with Lyme disease. Even worse is hearing from people suffering from Lyme who cannot afford treatment in the U.S. and are unable to find care in Canada. Many doctors are working hard, as are many provinces. Surely sharing best practices to decrease the extent of Lyme, the reliability of diagnosis and the research work toward improving treatment regimes is in all of our interests.”
Alberta Health initiated a tick surveillance program in 2013 to encourage the public to send in ticks they find, whether on themselves or outside for testing for Borrelia burgdorferi, the bacteria that causes Lyme disease. Ticks found on pets can be taken to most veterinary offices for testing. Alberta Health suggests calling local vets to confirm this first.
According to Alberta Health, 32 cases of Lyme disease were reported between 1998 and 2012. Alberta Health indicated that in all of these cases the individuals contracted Lyme disease while travelling outside of Alberta, however, “there is a possibility that the ticks that carry Lyme disease may emerge in Alberta” but “the current risk of being bitten by a tick infected with Lyme bacteria is believed to be very low.”
Through it all, Hutchinson has relied on long-term disability payments and her savings to get by financially, but she has reached a point that the payments are ending and her savings are nearly gone. And that is why her friend Anya Knechtel initiated an online fundraiser to help Hutchinson.
A fundraiser – Help Sarah Tick Off Lyme Disease – is currently ongoing to raise $30,000 to help Hutchinson pay her living and medical expenses until she can reach a point of self-sufficiency where she can at least work part-time. So far, the fundraiser has reached $15,283.
“Up until now I’ve survived without outside help. I had paid into long-term disability when I had my business so I had that for a number of years and when I was first dealing with the symptoms I shifted into part-time work. That was supplementing my income so I was going into my savings, but it was slower.
“But when I stopped being able to work, which is almost two years ago now, my entire medical expenses were going into my savings, and even my living expenses, because disability doesn’t give you as much,” she said.
“The fundraiser will get me through this period where I have no income and then help pay for my medical expenses over the period of time it takes for me to heal and I don’t have any credit left to do that. It will take away stress and allow me to continue my treatments and pay for rent and do all the things we have to do, which will contribute to my happiness, which contributes to my healing.”
For more information on the tick surveillance program, including advice on how to remove a tick, go to www.health.alberta.ca/health-info/lyme-disease.html, while the Canadian Lyme Disease Foundation – www.canlyme.com – offers advice, including prevention, diagnosis and living with the disease.
Hutchinson is sharing her journey, advice and knowledge online at www.foxnsox.wordpress.com and the fundraiser can be found at www.gofundme.com/tickofflyme.
