Paige Spencer can’t remember a day in the past six months when she didn’t feel pain everywhere in her body.
Most days she lives off Percocet and Gravol to calm down her stomach enough to eat.
She never knows what each day will bring.
“There is not a single inch of my body that I’ve not felt pain in,” says Spencer during an interview at her home last week. “I’m living in a constant nightmare … like a scary movie where you walk up to a corner and don’t know what’s around that corner.”
After suffering for 14 long years with many serious undiagnosed medical issues and through too many trips to the hospital to count, the pretty, articulate soon to be 21-year-old was finally diagnosed in July 2013 with late-stage chronic Lyme disease.
She takes 70 pills and up to six needles a day, all of which she administers herself. The young lady, who always dreamt of being an actress, is on a special diet and has a permanent PICC line in her left arm — a form of catheter to administer IV antibiotics — that goes right into a valve near her heart.
In her special treatment room — stocked with medications, equipment and two donated wheelchairs — a giant chart tells her what she needs to take by the hour. After enjoying a few months of respite last summer, she suffered a bad relapse in December and has been enduring unspeakable pain since.
Lyme disease is an inflammatory infection that spreads to humans through tick bites. It is most easily treated with antibiotics when caught within the first few days after infection. Left untreated for months or years, its symptoms worsen to the point where the heart, nervous system and joints can be involved, even leading to paralysis.
Ticks are most virulent in the months of May, June, July and August when people are enjoying the outdoors, but have been known to thrive in the winter, too.
Jim Wilson, president and founder of the Canadian Lyme Disease Foundation, says the disease is “very much” on the increase in Canada. Yet he hears stories all too frequently where people have been “bandied about through our medical system for years … left sick with no good answers for it.”
Wilson, a Lyme disease sufferer who is currently in remission, was forced to live several years without a diagnosis and by that point was so sick, he could hardly walk.
Paige figures she was bitten in the Rouge Valley where she spent time hiking with her family.
For 14 years the many doctors and specialists she and her family saw, diagnosed her symptoms as irritable bowel syndrome, endometriosis and finally fibromyalgia. It wasn’t until an uncle insisted she get tested that the results came back positive for Lyme disease.
There were those doctors and hospital staff who laughed at her symptoms, suggesting it was all in her head. They implied she was just a pretty girl who needed attention.
“I felt like an alien (when doctors said that) … I didn’t feel normal,” Paige says.
Last month 30-year-old singer Avril Lavigne revealed that it took eight months — and being called crazy by doctors as well — to be diagnosed with Lyme disease, the effects of which left her bedridden for five months. She told interviewers she has no idea where she got bitten.
Wilson, who is based in B.C., knows that many Lyme sufferers are frequently misdiagnosed with multiple sclerosis, Alzheimers, fibromyalgia and chronic fatigue syndrome.
He says doctors have been “misinformed for years” about the prevalence of Lyme disease in Canada.
Governments have insisted tick populations are only in specific areas, ignoring “the larger problem” of migratory birds who transplant the ticks anywhere, he says.
“I’ve had people find these ticks on their balconies several storeys up in downtown Toronto,” Wilson said, insisting no province has a concrete action plan to deal with Lyme disease, even though it’s far more prevalent than West Nile virus.
That is precisely why Paige found herself visiting the Ontario legislature in her wheelchair on May 6 (to coincide with Lyme Disease Awareness Month) to watch Health and Long-term Care Minister Eric Hoskins be grilled about what Ontario is doing for Lyme sufferers.
“If I can tell just one person, I might be able to save someone from going through this hell,” Paige says. “We need to re-educate our doctors because I am sick of them saying you have nothing wrong with you.”
Hoskins said in a statement Friday that they have developed a provincial Lyme disease action plan, which includes a review and update of existing public awareness materials and documents, and of testing, diagnosis and treatment protocols, to develop a “comprehensive” strategy to effectively deal with this serious problem.
Be that as it may, Paige worries everyday about the tremendous toll this is taking on her family, both financially and emotionally.
Mom Lianne says the drugs for Paige and the weekly visits to a Buffalo doctor — there is no one comparable in Toronto — cost about $5,000 a month and they’ve spent $95,000 alone in the past one and half years.
They’ve had to remortgage their home and obtain a line of credit for $75,000 to get Paige through the next 18 months. Lianne adds that the insurance companies have not been the least bit helpful reimbursing their costs.
Dad Rudy, who is turning 60 this year, can’t afford to retire and their house is falling apart.
“My biggest fear is that my family might lose our house over me,” says Paige, her eyes welling up with tears. “This hasn’t just affected my life … it’s affected my entire family… I can see fear in each and every one of their eyes. I’m not just the one suffering.”
If you’d like to help Paige and her family through this difficult time in their lives, you can donate to “Paige’s Fight for the Lyme Light Fund,” TD Bank, Transit No. 15842, Inst. No. 004 and Account No. 6654975.
I was so touched by Paige’s story I’ve decided to dedicate any proceeds I can raise from my upcoming Toronto Women’s Half Marathon run to Paige’s fund. The run is 21K and I welcome any amount per kilometre — $1 and up. The run is next Sunday, May 24, in Sunnybrook Park.