Living and suffering with Lyme disease
Niagara women support each other as they deal with debilitating illness
They live in the same city. Worked at the same job, for the same school board.
Now they’re both on long-term disability, thanks to bites they suffered years ago from an insect so small it’s measured in millimetres.
Despite their ages — Ullie Kowcun is 49 and Amanda VanDuzen is 35 — they have a lot in common.
Constant aches, exhaustion, brain fog, dizziness. Both say they feel much older than their years.
And they share the same diagnosis, Lyme disease.
They’re bonded by illness.
“It’s strange that it happened to both of us, but we motivate each other to keep going,” says VanDuzen.
Sometimes, she says, one is a shoulder for the other to cry on.
“I’ll text her and say, how are you today? And she’ll say, ‘I didn’t sleep and I’m in so much pain,’ and I’m like, ‘Oh my gosh, I’m so, so sorry.’
“That compassion, that empathy, it’s comforting. I know that sounds awful, because my friend is ill. But I’m comforted knowing that I can have someone who will motivate me and we will get through this together.”
Adds Kowcun: “We help each other to realize that, A, we’re not alone and, B, we’re not crazy.”
THE GROWTH OF lyme disease in Ontario, especially in areas that include parts of Niagara, has been well documented.
According to federal government statistics, there were 992 new cases reported in 2016 compared to only144 in 2009.
The provincial government says that following a tick bite, symptoms can show up anywhere from three to 30 days later or even more.
Often, the first sign is a bull’s eye-like red rash.
Lyme disease shows itself with fever, chills, stiff neck, muscle fatigue, swollen lymph nodes. Most cases, it says, are treated with antibiotics.
Kowcun and VanDuzen have been there and done that, and they say antibiotics didn’t help.
And the effects of their Lyme disease kept getting worse and worse.
Just a few years ago both were educational assistants with a local school board, working with special needs children.
They knew of each other back then, but it was only after VanDuzen saw social media posts by Kowcun that she reached out to her.
“She started posting things on Facebook, talking about pain and things like that,” says VanDuzen. “I thought, her story sounds similar to mine … I messaged her and said (Ullie), ‘What’s up?’”
A lot, it turns out.
Kowcun believes she was bitten by a tick five years ago during a camping trip to Pennsylvania.
Very quickly, she developed a sore foot and leg. By the time she returned to St. Catharines, she went straight to the hospital and was on crutches for a week and a half. The effects subsided and she was able to return to her job for a few years.
But then what she calls “drunk episodes” started, “where I would just — everything would kind of go in slow motion, and I really had to concentrate on my words and on walking.”
She wasn’t thinking of the tick bite at that point. She also has Graves disease, an autoimmune disorder, and blamed that for the episodes.
Just more than two years ago, though, the effects of Lyme disease were so strong she had to leave the job she’d had for 20 years and go on longterm disability.
“It started with double vision … it was so bad that I couldn’t function being out in public,” Kowcun says.
Then there were the “brain zaps,” where “it literally feels like an electric current in your brain” and she would lose her balance.
“A lot of times I would forget words altogether,” she says, and then she developed an extreme sensitivity to touch, even something as soft as a bedsheet on her face.
“Everything resulted in that pain response,” she says.
“If I was walking and there was a breeze, I would get that pain response. If there was rain on the windshield … this isn’t pain like you’ve got a sore back, it’s like a nerve pain that is stabbing, burning, zapping, pinching.
“All those things that don’t make sense kind of pain.”
VanDuzen says she knows the feeling. Doctors visits and medications didn’t help.
There were aches, extreme exhaustion, dizziness. She left her job with the board, also as an educational assistant, in October.
Sometimes her neck felt like it was in a vise — “I couldn’t even hold my son properly to nurse him, my mom had to help me,” she says.
He’s four years old now and, she says, is showing symptoms that make her think she might have passed on
Lyme disease to him.
Tests aren’t conclusive but she is worried enough that she has started a GoFundMe page to raise money to help pay for care he might need.
It’s only within the past year that VanDuzen and Kowcun were actually diagnosed. Both say the Ontario health system falls short in treating Lyme, and while there are clinics in the U.S. and abroad they are extremely expensive.
Both have tried changing their diets, doctors’ prescriptions, following detox regimens to cleanse toxins from their bodies.
“This is how people with Lyme basically lose their self-worth, because now I have to change my entire diet,” says VanDuzen.
“I eat basically fruits, vegetables and live off of bone broth and smoothies. I have to detox, which costs money.
“I basically have to just do nothing every day in order to feel OK.”
Her advice: “Never stop advocating for yourself if you believe there’s something else wrong.”
She saw numerous doctors, she says, and finally a naturopath sent her bloodwork to a lab in the U.S., which confirmed Lyme disease.
Most of Niagara through to Wainfleet, parts of Hamilton and Long Point and Turkey Point are areas highlighted by Public Health Ontario where people are more likely to come in contact with blacklegged ticks, or deer ticks.
Medical advice says to protect yourself in wooded areas and places with tall grass by covering up, using insect repellant and checking your skin and clothing afterward for ticks.
Most bites do not lead to illness, especially if the tick is removed — by using tweezers — within 36 to 48 hours.
“I wouldn’t even say wooded areas — they’re in your backyard, you can walk even just down the street” and get bitten, says VanDuzen.
“People need to be cognizant because this is real stuff. I am now feeling like I’m 80 and I’m only 35, with two children.”
“I’m comforted knowing that I can have someone who will motivate me and we will get through this together.”
AMANDA VANDUZEN BATTLING LYME DISEASE