Paul McLaughlin
Contributor
In the summer of 2008, York University student Anna Jaskolka visited Szczecinek, Poland, where she had lived until age two before coming with her family to Canada. It was a trip that would change her life dramatically, to a degree that has often made her feel suicidal.
The reason? A microscopic tick infected with the bacterium Borrelia burgdorferi, which causes Lyme disease, an illness few Canadians, including many medical doctors, know virtually anything about.
An avid runner at the time, Jaskolka went jogging in nearby woods, unaware that travelers to Poland are advised to be careful when in forested areas for fear of being bitten by an infected tick. “I always ran in my shorts and t-shirt,” she says, rather than the long clothing recommended for known Lyme areas. “I had never heard of Lyme disease.”
Soon after returning to Toronto, the normally happy and super-energetic political science undergrad began to feel chronically tired and constantly in pain. Her body ached all over, especially her knees, a symptom common with Lyme victims. “I’m always in pain,” the 24-year-old says. “It’s like I have the worst flu every day.”
A self-described “Type A” personality and life of the party, Jaskolka quickly became the complete opposite. “Two years ago in the summer I worked at a daycare from 7 am to 4 pm. Then at a retail job from 5 pm to 9 pm. And then at a bar until 3 am. I was never tired. Now I stay home all the time and all I do is play Nintendo with my boyfriend.”
Jaskolka sought help from a slew of doctors, none of whom even mentioned Lyme disease.
Named after the small town of Old Lyme, Connecticut, where it was first discovered in 1975, the disease is well known in parts of the U.S., especially the north-east, but far less so in Canada. This will soon change, however, as birds migrating from the U.S. are transporting the ticks across the border and wetter, milder winters here are allowing them to survive and breed.
Many of Jaskolka’s doctors prescribed blood work, but did not include a Lyme test. She was most often told she had fibromyalgia, a chronic pain disease that mirrors many of Lyme’s symptoms. The medication she was given to treat the fibromyalgia made her more ill.
“My knees were so sore that I thought my shoes might be the problem, so I bought these old lady shoes, but they made no difference.”
When nothing helped alleviate her pain and fatigue, some of the doctors, and also some family members and friends, suggested her problems were psychological, not physical. One doctor even went as far as to have her secretary tell Jaskolka never to come back to her office.
In the summer of 2009, Jaskolka’s uncle, who is Polish, suggested she might have Lyme disease. “His mother had got it in Poland and he thought I might have it too,” she says.
After conducting her own research Jaskolka felt her uncle was right. She asked several doctors to test her for Lyme, but they refused. Many Lyme sufferers experience that very same reaction when dealing with the medical community in Canada.
Even if a doctor does agree to a Lyme test, the one used in Canada, known as ELISA (enzyme-linked immunosorbent assay) has a reputation for producing many false negative results. Within the Lyme community (a small but very active group in North America), a second test, known as the Western Blot, is far more accurate. Few Canadian doctors, however, will order it if the ELISA is negative.
Jaskolka’s health continued to suffer. So too did her social life. Many friends stopped hanging out with her. Many family members shunned her. She often felt frustrated by the consideration people give to cancer victims, a sympathy and understanding she has rarely been afforded.
“I’ve seen people go through cancer and it’s so hard,” she says. “But they get better in a few months to a year or they die. Either option is better than what I am going through.” Sometimes, she admits, she has felt so despondent that suicide has crossed her mind, although she’s sure she would never actually go that far. After she read an article I wrote on Lyme for the Toronto Star last July, Jaskolka contacted someone I had interviewed. He told her to send her blood to a private lab in the U.S., at her own expense, to have a Western Blot test conducted. It came back positive for Lyme disease.
She was eventually able to find a local doctor willing to treat her for Lyme. He is one of the few physicians in Canada willing to prescribe the long-term and massive doses of antibiotics that are the primary treatment for someone who was not diagnosed within about 48 hours of being bitten; in those cases antibiotics can usually remove the infection from the body.
An indication of how paranoid doctors tend to be about Lyme, which some medical experts believe is not an actual disease, Jaskolka’s doctor didn’t want to be named for this article. Another Toronto- area doctor who treated Lyme victims recently retired after being harassed by the medical governing bodies because of his practice.
Now under treatment designed to combat Lyme disease, Jaskolka is feeling a little better. Her doctor says she might be better in a year and a half from now. She had to drop some courses last year because of her fatigue and is finishing her fourth year on a reduced workload. She has a note from the disability office that says her condition has to be factored in by her professors. One of them, she feels, didn’t believe she had a real problem.
Her new doctor has given Jaskolka hope for the future, but at present she speaks of what lies ahead with a certain sad resignation. “I’ll graduate this year, but what will I do then? I can’t commit to a full-time job. What do I have to talk to others about? They are looking forward to their lives and accomplishing things, but I’m kind of standing still.”
One hope she does have is that people would be more understanding about what she is going through. “I wish people would take [Lyme disease] more seriously,” she says. “I feel like I can’t talk to anyone because they don’t know what I’m going through.” She smiles as she says that, but her eyes are sad and full of pain.
Lyme Disease
Nasty bugs
The Canadian tick population is found most commonly in southern and eastern Ontario, but spans four out of five regions.
Symptoms
The first noticeable symptom of Lyme disease is a rash on the body. Other symptoms include fevers, headaches, blurriness and neck stiffness.
History
Lyme disease was first discovered in 1975 in the United States in a small town called Old Lyme, Connecticut.
Protesting patients
In 2007, 100 Lyme disease sufferers headed to Parliament Hill to protest on behalf of better Lyme disease testing and increased federal funding for research.
Nationally underreported
In Canada, Lyme disease is still not a nationally reported disease.
Presidential problem
In 2006, then-U.S. president George W. Bush was treated for Lyme disease.
A cruel twist of Lyme
About the Author
I am very sorry to hear about what has happened to Ms. Jaskolka, and her frustrating experience with the health care system when trying to get an accurate diagnosis, and subsequent treatment.
I am concerned, however, that basic facts outside of Ms. Jaskolka’s experience were not checked prior to publication. For example, the article states that Lyme disease is not a nationally reported disease. The Public Health Agency of Canada’s website (http://www.phac-aspc.gc.ca/id-mi/lyme-fs-eng.php), which was last updated on April 6, 2010 states that the disease became nationally reportable in 2010, indicating that Canada has been keeping track of cases for almost a year now.
I am at a loss to understand why “Jaskolka’s doctor didn’t want to be named for this article,” as the same website makes it clear that Canada recognises Lyme disease as a legitimate concern, and agrees that anyone who has had Lyme disease for a long time may need to be treated with antibiotics for a longer period of time, as appears to be the case here.
Furthermore, Canadian Institutes of Health Research (CIHR) is funding a 5-year study to better understand the disease.
Please cite your sources.
Shelley,
Providing information about a disease is not the same things as actively treating it. Canadian documents may recognize Lyme Disease as “nationally reported disease” but Canadian doctor’s sure don’t. I cannot tell you how many times I’ve been kicked out are asked not to return to a doctor’s office after having mentioned Lyme Disease. Furthermore, every time I asked to be effectively tested for Lyme, each doctor refused claiming I was just depressed and needed pills to up my mood levels.
I’ve had Lyme Disease for 3 years now and was only diagnosed last summer when I took matters into my own hands and pursued to get tested in the United States after being turned down countless times in Canada.
Lastly, if there is one thing that I have learned in my years at university is that critical thinking skills are important when analyzing any situation. Facts are not always facts because they are posted on the internet. Perhaps, if you would like to understand Lyme Disease as it has been truly experienced in the Canadian context, you should go to the source and ask its victims. I can assure you, my story is reiterated by Canadian Lyme sufferers all over the country. That’s a fact!
Oh, Shelley, yes the facts are there wrong.
What is wrong actually is the statement that “Few Canadian doctors, however, will order it if the ELISA is negative.”
Unfortunately, that decision does not lie in the hands of Physicians.
What actually happens is that a Physicican will suspect that a patient might have Lyme disease. They will order Lyme serology (some even order “Lime” serology – as most Dr’s aren’t even educated on the disease or what to look for, never mind the testing that should be performed!)
The PUBLIC HEALTH LABS receive the requisition – they perform the “Gold Standard” (highly flawed) ELISA. If the ELISA does not show positive – the patient will never receive a Western blot. The Physician can even put JUST Western blot on the requisition. The patient will not receive it.
The Physician receives a piece of paper back from the Public Health Lab that states “Non-reactive” and now that Physician thinks it’s not possible for their patient to have the disease.
The patient goes without proper treatment and voila! Chronic illnesses plague our country!
So…”Nationally reportable” now becomes this….many patients are misdiagnosed due to inadequate testing system we have in Canada. Only POSITIVE tests by the Public Health Labs are sent back to the Public Health Departments to be logged and reported – to Physicians and the Public. The numbers are WRONG. Your chance of receiving a positive ELISA are 4 – 60%…as new data shows you are “better off to flip a coin”!
And gee – honey! You are “at a loss to understand why Jaskolka’s Doctor didn’t want to be named for this article”….have you never heard of Dr. Krop?
The College of Physicians and Surgeons of Ontario breathe down the neck of any Physician they hear of who treats outside the very flawed USA-CDC-IDSA guidelines…which CANADA strictly adheres to.
We have an entire international peer group of Physicians and scientists that have proven these guidelines to be flawed.
If any Physician would like to further educate themselves on how they can follow the HYPOCRATIC OATH and “FIRST, DO NO HARM”…they can attend the ILADS conference that will be held in Toronto, October 28th – 30th.
As far as the CIHR and “funding a 5 year study”…way to go and waste tax-payers money again. It would be very nice to see each and every one who is working in the CIHR department attending the ILADS conference…hey, you might actually learn something and not have to do redundant research!!
Anna, I wholly agree with your response to Shelley. It is a very common theme that the general public is relying on simplified inaccurate information that our “medical” government publishes. Shelley, I challenge people like you to walk into any medical facility, be it your family practicioner, an urgent care clinic, the emergency department at any hospital, call any Public Health agency, and advise them that you feel you need to be tested for Lyme disease – and see the reaction you get. In order for a disease to be reported through the Public Health Agency of Canada, you NEED to receive proper testing – which is NOT happening in CANADA. It is NOT happening because our physicians are NOT mandated to be educated about this disease. I challenge you to call any Public Health Agency and ask for a copy of the report regarding Lyme disease – you will get very little to no information.
Regarding your comment about this physician not wanting to be named – it shouldn’t take anyone more than a minute to determine why this is the case. This topic is controversial. It is also political. Fear is the sustaining power behind why lyme literate physicians remain anonymous.
Funding research is wonderful – but in the meantime, what is being done to help those who are currently suffering from the disease. I am NOT a lyme patient, however my beloved sister is. I have followed her case for three long difficult years, watching many physicians on all levels turn their backs on her. I agree with Anna – this disease is worse than cancer (my mother died at the age of 49 from lung/brain cancer, so I do NOT state this without careful deliberation). With cancer you have the backing of our medical field. There is an abundance of help for all cancer patients. There is NO help for our lyme patients. Shelley, I challenge you – and people with your attitude – to sit with a one lyme patient for one day to see and hear how tragically devastating this disease is.