An open letter to the Prime Minister of Canada
This is the letter I’ve written to Mr. Trudeau. I invite you to share this, sent to a newspaper, news channel, tweet it, #hashtag it, and use whatever other form of social media you prefer to help me get this message noticed.
I also invite you to re-submit this letter to our Prime Minster on my behalf. I’d love to flood the mailboxes and inboxes of our government leaders (MP’s, MPP’s and ministers) so that this cannot be ignored.
At the bottom of the letter are some links to help send this letter easier. Thank you to everyone who shares, passes it on and helps to advocate!
Dear Mr. Prime Minister
My name is Sara, I’m 29 years old and live in northwestern Ontario. I used to run half marathons, lift weights, practice and teach yoga, own a business and co-own another and work part time as Registered Dietitian.
My life has drastically changed. I am now on long term disability. I don’t run, I barely walk. I don’t lift weights, some days I can’t even lift my own arm. Practicing yoga now means deep breathing and even that is difficult. My education; has served me well up until now but some days I struggle to read a sentence and I forget the names of simple things, like “chair”.
Why should you care?
Because you can do something. You can help save and change the lives of thousands of Canadians from becoming like me and the rest who are suffering along with me.
What’s wrong with us?
We got a bug bite.
We were bitten by a tick. Seems trivial… but that tick transmitted an incredibly intelligent bacteria into our bodies and it has completely taken over. It’s called Borrelia burdorferi. We have Lyme Disease. That’s not all, some of us were bitten by a tick that also carried other bacteria, viruses or parasites – making us even sicker.
I don’t have a lot of Canadian data to share with you; that is most likely due to the lack of funding but I do have some eye-opening statistics and facts from the International Lyme and Associated Diseases Society (ILADS):
According to the CDC, Lyme Disease is the fastest growing vector-borne, infectious disease in the United States.The CDC reports that Lyme Disease infects 300,000 people a year. 10 times more Americans than previously reported.The CDC estimates that there are 822 new Lyme cases per day, which works out to 34 new cases per hour.40% of Lyme patients end up with long term health problems. The average patient sees five doctors over nearly 2 years before being diagnosed.
I don’t intend to sound rude or demanding but I want to make my message clear. The Canadian health care system is failing thousands of people suffering with Lyme Disease and some of them don’t even have a diagnosis – they have no idea what is wrong, or they’ve been misdiagnosed with an autoimmune disease, or another one of the many misdiagnosis.
One of the reasons we are being failed by our health care system is because many doctors and health care professionals believe that Lyme is difficult to get, and easy to treat. Many doctors argue that you must have a “bullseye rash” to have Lyme Disease, however statistics tell us that up to 50% of those infected do not have this rash.
To have a blood test for it may take some convincing, and then the doctor will order an ELISA test for the bacteria. IF, and only if this comes back positive will a Western Blot test be ordered to confirm the infection.
Here is the problem: the ELISA test isn’t very reliable, according to ILADS the ELISA test misses 35% of culture proven Lyme Disease. Some studies indicate up to 50% of patients tested for Lyme Disease received false negative results from the ELISA test.
I was told because I did not have the bullseye rash, it was unlikely I had Lyme. It was 17 months after being bitten that the ELISA test was done. It came back negative. Next I spent roughly $35,000 to go to the Mayo Clinic looking for an answer; this also failed me. I then paid out of pocket to have the Western Blot test done in California and it was positive; my test was positive even by the CDC standards which makes it reportable. I am now also a statistic.
On May 15-17th there is a Federal Framework on Lyme Disease Conference in Ottawa – there are a lot of people who’ve been working tirelessly to change things. Stop them from working so tirelessly to help thousands of Canadians. It is time to do something and make suffering from misdiagnosis and lack of treatment for Lyme Disease part of Canada’s past.
The annual incidence of Lyme Disease is higher than that of breast cancer, hepatitis, colon cancer, Multiple Sclerosis, HIV/AIDS and West Nile virus in the United States. This is a serious problem that is poorly funded, poorly recognized and poorly treated in many countries, including Canada.
You want your government to be a pioneer and lead the world?
This is one way you can do that. Recognize this health crisis (which will grow with global warming) and get involved. Don’t allow this to continue. We all know you’ve fought for breast cancer, it is time to stand up in the fight against Lyme Disease.
I want you to read this letter and I know the longer it is, the less likely it is for you to read it. For that reason alone, I won’t begin to discuss what a “Lyme Literate Doctor” is, or why so many Canadians are travelling multiple times to the United States to seek out these doctors.
Will I get better?
I’m told to expect a one-to-two year course of treatment. I’ll likely be able to do everything I once did, but i might not be able to do it as well. I may have lingering symptoms that will never disappear. We don’t really know, no one does.
If you want to know more about me or how I’ve been affected and my treatment, I encourage you to visit my blog at www.soulnutritionconsulting.com
I am not asking for an apology on behalf our the Canadian health care system. I’m not looking for sympathy, and I am not asking for a reply. What I would like you to do is pick up the phone and contact the Canadian Lyme Disease Foundation and ask what you, the Prime Minister can do to make Canada a leader in the fight against Lyme Disease.
Thank you for your time,
Kathleen Wynne, Premier of Ontario:
Dr. Eric Hoskins, Minister of Health and Long Term Care
Sarah Campbell (our local Kenora-Rainy River MPP)
NOTE: I have been in contact with Sarah’s office and had a meeting with her.
Bob Nault (our local MP)
Justin Trudeau (Prime Minister)
Office of the Prime Minister
80 Wellington Street