For chronic Lyme disease sufferer Paige Spencer, the past year has been full of blessed highs and terrifying lows.
The good news is that the attractive, outgoing, soon-to-be 22-year-old appears to have gone into remission since January, allowing her to reduce the number of pills she takes per day — from 78 to 40 — and to get around without depending on a wheelchair.
And she is thankful for the loving support of her immediate family, her grandparents and her boyfriend, who has been with her through thick and thin.
Since my article on her appeared one year ago, Spencer figures she has helped hundreds of Lyme sufferers through personal emails and her Facebook page, www.facebook.com/TheLymeFiles.
She suffered for 14 long years with a litany of serious undiagnosed medical issues and repeated trips to the hospital. Then, in July 2013, she was diagnosed with Lyme disease.
Commonly transmitted to humans through tick bites, Lyme disease can easily be treated with antibiotics if caught within the first few days of infection. However, if left untreated — or worse, misdiagnosed for longer than a few weeks — the disease can attack every system of the body and result in neurological illnesses, even paralysis.
Spencer is still dealing with the many infections and chronic pain that came as a result of the Lyme disease severely weakening her immune system.
Just a few days after we met to catch up on her disease and her advocacy to build awareness for what she calls a “worldwide epidemic” that has been ignored for far too long, she was due to undergo delicate surgery for severe endometriosis caused by the disease.
Although the operation ended up being a tremendous success, her mom, Lianne, emailed to tell me Paige was rushed back to Sunnybrook hospital by ambulance the night after the surgery in tremendous pain and coughing up blood.
“Everything is harder … Whenever Paige has an issue, the bacteria of the Lyme disease and the co-infections make things worse,” she said.
Lianne added the nurses were “wonderful” but it took five hours to see a doctor.
And that’s where the terrifying lows come in.
Paige and her mom say they’ve seen the very worst of the medical profession in the last year, particularly in March when she found herself at three hospitals in one week after one of her infections, Bartonella, started attacking her spinal cord, leaving her paralyzed on the floor and in excruciating pain.
During that one week, Paige said she experienced an angry doctor, slow nurses who put an IV in the wrong way, and just generally unprofessional staff who pushed her around even though she was in extreme pain.
“I didn’t think I’d get through it … I thought I was going to die,” she said.
She’s convinced she has been blacklisted at some hospitals because of her Lyme disease. Lianne added they continually get mocked and “treated like animals” (by doctors or nurses who are not educated about the disease and its co-infections or think it’s all in Paige’s head).
I reached Jim Wilson, head and founder of the Canadian Lyme Disease Foundation (canlyme.com) at the end of a three-day conference in Ottawa to discuss a plan to counteract the still woefully inadequate diagnosis, treatment and prevention of Lyme disease in Canada.
He should know. Wilson suffered for years with the disease — which remained undiagnosed to the point where he couldn’t speak and could hardly walk. He told me once he got on antibiotics — and stayed on them for months at a time — he went into remission (the disease is never cured).
Wilson said not only is the disease on the “increase” in Canada, but the idea that it is contained to certain parks — as Toronto public health officials implied in a May 9 press conference — is false.
He said migratory birds transplant the ticks anywhere and everywhere, even to balconies several floors up in downtown highrises.
Asked what has been accomplished by the Ontario ministry of health in the past year — which has promised a “comprehensive strategy” to deal with this issue — a ministry spokesman made it clear the strategy is still a long way off.
Paige said she’s frustrated because so many people are misdiagnosed, the testing for Lyme disease in Canada is “flawed,” doctors are not educated to recognize the symptoms, and she feels the health ministry has been “dodging” a Lyme strategy.
She said when taking a pet to the vet (and I can vouch for that), there is all kinds of information on Lyme disease prevention for dogs and cats. But we see nothing like that in a typical doctor’s office.
THE REAL STORY ABOUT LYME DISEASE:
An inflammatory infection caused by tick bites.
Lyme-carrying ticks are common in Canada.
Black-legged ticks are carriers in Ontario.
High-risk, tick-infested areas include: Wooded areas, nature parks, grassy fields and beaches.
Ticks attach to any part of the human body — but often in hard-to-see areas such as armpits, the groin and the scalp.
Symptoms of Lyme disease vary from person to person but can be a rash — sometimes like a bull’s-eye mark — and flu-like symptoms, including fever, migraine-type headaches, nausea and muscle aches.
Detected early, Lyme disease is treated with antibiotics.
A SELECTION OF LYME MYTHS:
Lyme-infected ticks only live in rural parts of Canada. Fact: Lyme disease is present in most of Canada.
Chronic Lyme disease will go away on its own. Fact: The opposite is true, according to research.
You cannot be bitten by a tick in winter. Fact: An average tick can survive in very cold climates and it’s still possible to be infected with Lyme disease in the winter months.
All Lyme victims develop a “bull’s-eye” rash. Fact: Only 30% of Lyme patients report experiencing a rash, and just 9% develop the “bull’s-eye.”
Lyme disease testing has a “gold standard” in Canada. Fact: There is no universally accepted test for Lyme disease. Every lab test has its advantages and disadvantages, but overall Lyme tests in Canada are largely flawed.