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Once a vibrant and active woman, Simone Barnard now feels like a shell of the woman she used to be.
Barnard suffers from chronic Lyme disease, a disease that went misdiagnosed for nine years.
“I was misdiagnosed with fibromyalgia, depression, anxiety, cluster headaches, allergies, et cetera,” said Barnard. “Over the years I kept developing new and odd cognitive and physical symptoms, however I never put them all together. Before Lyme [disease]I was a go-go-go person. I had recently graduated university, while raising a child alone, and ran my own successful business. I was super outgoing and adventurous. I loved to hike and rarely sat still. After Lyme [disease]I was no longer able to hike, and, in fact at times, I have had to use a wheelchair. On good days now I can manage a 30-minute walk or an hour or so of errands.”
Barnard contracted Lyme disease in the summer of 2008, while living in northeastern England.
“I do not remember the tick bite, however, I did have a bulls-eye rash, which at the time I dismissed as a spider bite,” she said. “Only a small percentage of those bitten by an infected tick actually get the telltale bulls-eye rash. When I first got ill, I just thought I had come down with the world’s worst flu. I was deathly ill for three solid weeks and then after that I was almost bedridden for three months.”
Blood tests done in England and Canada came back negative for Lyme disease.
“It was September 2017 when my osteopath, Colleen Bush, said to me, ‘I think you may have Lyme disease.’ I immediately said, ‘No, I don’t, I have had numerous blood tests for Lyme that all came back negative.’ I had even seen an infectious disease specialist who said I didn’t have Lyme. She then mentioned that the current blood test used in Canada is known to be very inaccurate and suggested I look into Lyme [disease]more.”
Barnard said when she started researching the disease more in-depth she was blown away.
“I had every symptom and sign of the disease,” she said. “I contacted the Ontario Lyme Association and was given a list of ‘Lyme literate doctors’ in Ontario.”
Barnard was also diagnosed with Rocky Mountain spotted fever, a tick-borne bacterial illness.
“It took me months to find a Lyme-literate medical doctor who was knowledgeable and able to treat me. Many, if not most, Lyme patients have to go to the U.S. for expensive treatment, therefore I was very blessed to find a doctor in Ontario,” said Barnard. “I have also now given Lyme disease to my husband, as some of the tick-borne bacteria can be sexually transmitted. Lyme [disease]not only affects the body but it can equally affect the mind. For me the Lyme bacteria is now in my brain, organs (including most noticeably my heart) and all over. After doing a physical or mental activity both my mind and body need rest.”
Barnard talks on social media with other people suffering from Lyme disease.
“I try to raise as much awareness as possible about Lyme disease for many reasons. The main one though is the medical community is unable to properly diagnose and treat Lyme disease, therefore we need to be aware of it so we can first of all avoid tick bites where possible, and then if bitten know what steps to take,” she said.
If Lyme is treated properly while it’s acute it is curable. It’s when it moves into the chronic stage, like mine, that it becomes a life-long battle. Lyme is a very, very lonely disease. No one really knows what it’s like to fight this battle. I would do anything to be able to hike again, to be able to have my mind back so I can complete my master’s degree, to have a conversation with someone without my mind having to focus on finding the right words or thinking extra hard to comprehend what is being said.
Barnard said while the disease has changed every aspect of her life, there is a silver lining.
“I believe all bad can be used for good, and through my experience I have not only grown immensely spiritually and emotionally, I have been able to help many others,” she said.
“I have brought awareness and even if I help only one other person not have to suffer with chronic Lyme disease by raising awareness then it is all worth it. I want people to be aware, not to scare them into never leaving the house for fear of a tick bite, to take preventative steps when outdoors. Protecting your pets and doing self-checks for ticks after being outdoors. If you find a tick on you it’s important to know how to safely remove it and how to send it off for testing. I always give the example of my brother, who lives in Pickering. He found a fully engorged tick on him last year. He removed it, sent it off for private testing and in the meantime started on a preventative dose of antibiotics. The tick tested positive for Lyme disease, however, because he started the antibiotics the day he pulled the tick off he never developed any Lyme [disease]symptoms.”
Barnard recommends the information on tick removal found at lymehope.ca.
The Simcoe Muskoka District Health Unit recently released some precautions to take against Lyme disease and West Nile virus, as people will be spending more time outside with the return of warmer weather.
The health unit recommends:
- Avoiding being outdoors at dusk or dawn when mosquitoes are most active.
- When outdoors in grassy or wooded areas, wearing light-coloured, long-sleeved shirts and pants, wearing shoes with closed toes, and tucking your pant cuffs into your socks. Light-coloured clothing makes ticks easier to see.
- Using an insect repellent containing DEET or icaridin. Prior to using an insect repellent, make sure it is registered in Canada, read the label and follow directions. If using a spray repellent, be sure to use the product in a well-ventilated area. Apply only to exposed skin and/or clothing—never underneath clothing.
- Eliminate potential mosquito breeding sites on your property where water can gather and become stagnant.
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