To put it mildly, the way Lyme disease is being handled in Sask pisses me off. It is just so wrong.
Most of you have probably read the struggle I had to get a diagnosis. If you haven’t read that yet, click here. You won’t believe what I went through.
The problem is that the Saskatchewan Ministry of Health does not recognize that there is an increasing risk of contracting Lyme disease in our province. In fact they say there is nearly no risk. They report that since 2005 there have only been 3 Lyme cases and 2 of those contracted it from outside the province. (Bullshit – there are actually many many SK residents who have Lyme, and contracted it in our province.)
The problem with their information is that it is based on outdated testing and diagnosing standards. Sask Health uses the ELISA tests – which tests for only one strain of Lyme (there are many strains). The majority of people with Lyme disease would test negative on this archaic test. The Canadian standard for diagnosing Lyme follows what is outlined by the American CDC. About 20 years ago, 20% of Americans were given a vaccine that could result in a false positive on certain strains of Lyme disease. Because of this, those strains are not included in the tests for anyone – not even the 80% of the population that did not receive this certain vaccine. And to my knowledge, no one in Canada was given this vaccine, so 100% of Canadians would have no risk of this false-positive. Stupid that we follow that protocol, isn’t it?
The Sask Health website mentions that if anyone with a positive test result from a lab in the States that does not meet CDC protocol, should have the old ELISA test repeated to ensure that the diagnosis meets the Canadian definition for Lyme. Make sense? Hell no. They are basically saying that if you test positive for Lyme using the newest testing methods, you have to re-do the old outdated test (that doesn’t work) for the government to officially recognize that you have a disease. Wow. Just Wow. I don’t even know how to verbalize the level of stupidity involved here.
What this all means is that our province doesn’t officially recognize that I have a disease or that Lyme even exists here – which means there are no doctors here in Sask to diagnose Lyme, to treat Lyme, or even to provide any support whatsoever for Lyme patients. My own family doctor told me straight out that I would have trouble getting provincial coverage for my illness because he is the one that has to complete the insurance paperwork. In other words – I am on my own and I also have to pay everything out of pocket. Gee, thanks!
Can you imagine getting diagnosed with cancer and on top of the bad news, your doctor slips in “oh by the way, you are going to go completely broke trying to regain your health”. And then to add insult to injury your doctor adds “ps – I don’t actually think you have cancer so you are on your own to find someone that can help treat your illness. And I don’t have anyone to refer you too, because your type of cancer doesn’t technically exist here.” WTF right?!?!?
Because of this horrendous attitude, I had no choice but to seek out naturopathic doctors (ND’s), as medical doctors (MD’s) will not do anything to help me besides check my thyroid levels every 3 months (hypothyroidism is one of my 40+ symptoms of Lyme). Visits to MD’s are free (covered by our provincial health care system) but visits to ND’s are not. I have to pay for every single doctor appointment I have regarding my Lyme illness. I go to my ND at least once a week here in Saskatoon; every now and then I have 2 appointments per week. And I have a phone appointment with my Calgary ND every 4 weeks with occasional appointments between the regular ones. Every 4 weeks worth of appointments costs me over $350.
Prescriptions are another battle. Because of stupid legislation the prescriptions provided by my Calgary ND have to get shipped to me from pharmacies in other parts of the country (one from Vancouver, another from Toronto). I cannot get those prescriptions filled here in Saskatoon due to rules I don’t understand. I have to eat the shipping costs and for some reason my work benefits company caps the limit of coverage they provide for the actual drug itself – I am not sure why. The good news is that the SK government recently passed a bill that will allow ND’s in our province to write prescriptions. I am not sure when that will come in to affect, but I hope it is soon.
The current treatment for Lyme is a 4 week course of antibiotics which fights the disease down to a level where your body is able to function almost normally (you actually have to remain on antibiotics much longer to remain at that ‘almost normal’ stage of health). There is currently no cure for the illness. What really pisses me off is that after reading online about Lyme disease, I was under the impression that 4 weeks of antibiotics would kill the disease and that I would regain my health. This is almost a down-right lie. I have learned that the 4 weeks of antibiotics usually kills the disease if started within a day or two of the tick bite.
I don’t think there is a doctor in this province that would prescribe this course of action unless you have that bulls eye rash that they could see with their own eyes. The latest researching is finding that only about 20% of Lyme patients get it. So good luck getting your ‘cure’ in time if you don’t have that rash. That outdated ELISA test I mentioned above works by testing for antibodies that your immune system produces by trying to fight the Lyme bacteria. There is mounting evidence that it takes several weeks for your body to produce enough antibodies to be detected by this shitty ass test. Which means that if by some miracle the ELISA tested positive for Lyme, it would be too late for the antibiotics to ‘cure’ you.
If you are still sick with persistent Lyme symptoms after the 4 week course of antibiotics, medical doctors will tell you that you have “Post-Lyme” syndrome. Which they think of and treat as a different condition. This is what is often called “chronic Lyme” which you have for the rest of your life. Except that it is not a different disease – it is the same damn one you started out with, it’s just that the antibiotics didn’t kill it! At this point doctors aren’t able to help you further and you’re basically screwed. Lovely, eh?
I will go more into detail when I write about treatment (in another post) but it involves taking a lot of supplements and botanicals that are not covered by provincial health care. I usually shell out anywhere from $200-$300 every 4 weeks for these supplements. I often have to try different products or brands as Lyme treatment is mostly trail & error (sounds fun hey?!). Again, no help from provincial health care that my taxes pay for.
You want to know what else pisses me off? In the past few months Health Canada, the Sask Health Ministry and the Sask College of Physicians sounded the battle cry for the Zika virus and has made sure to spread awareness to the public, ensured citizens can get diagnosed and treated, and have many information resources available. Did you know that you cannot get Zika in Canada? (You may get it if you travel to certain foreign countries.) Why the hell are they not doing the same for Lyme disease?? A debilitating illness you can get in our own country, in your own back yard!?!? Seriously, what. the. hell…
Even more shameful is that the information provided by Health Canada on Lyme disease is outdated and confusing. If you are wondering what exactly Lyme disease is, see my post here.
I am planning to write to my MLA outlining these issues. I would love if you also took up the torch and wrote to your MLA about the increasing risk of Lyme in Saskatchewan. I have many friends that ask if there is something they can do to help me – this would be a big one if you have a bit of time. The more people that voice their concerns to our politicians, the sooner I can get the help I need. Thank you!
(To find your MLA after the April 4/16 provincial election, visit their website here.)
And a huge shout out to everyone who has supported me by donating to my GoFundMe page. I would not be able to keep up with my medical bills without your help. The generosity has been absolutely amazing and I cannot thank everyone enough. It has been a very humbling experience but it warms my heart to know how many good people are out there. Big hugs to you all ♥.
(If you would like to contribute to my medical fund, please click on the ‘Donate’ link at the top of the page. Thanks so much in advance!)