So today, after 28 days, I have finally finished my treatment for Lyme disease.
For those that didn’t know, a couple of months ago, I was diagnosed with something called Guillian-Barre Syndrome. A month after spending five days in the hospital being treated for it, I was told I was misdiagnosed. I actually had Lyme disease instead.
Okay, fine. I can deal with it. I don’t mind the misdiagnosis. It happens. It can’t be changed, so why worry about it.
What I do mind is the lack of information the doctors have been telling me. It’s brutal. The infectious disease doctors at the Ottawa Hospital have literally told me nothing.
In fact, they may have just as well said “You have a mysterious illness that we can’t confirm, but don’t worry, we’re taking steps to get rid of it.”
Case in point, I had a follow-up at the doctor from the infectious disease office last week. I had some questions.
Our conversation went like this:
Me: “Now that I have been treated for Lyme disease, what are the chances I can get it again? Am I completely immune to it?”
Doctor: “I don’t know.”
Me: “Oh. How many people a year in Ottawa are infected with Lyme disease anyways.”
Doctor: “I don’t know.”
Doctor: “So listen. If you have any other symptoms, it’s important you come see us immediately.”
Me: ” What symptoms should I be looking for?”
Doctor: “I can’t tell you that.”
Me: “Okay. I’ve been doing some research online. I’ll just use that as a guide.”
Doctor: “No, you should never trust anything you read on the Internet about this.”
To sum it up, I have to be on the lookout for symptoms the doctor won’t tell me about, and I can’t use the Internet to help me. So if I get a fever next month, is that a symptom of Lyme disease, or do I have a basic fever? I don’t know, and I don’t think doctors in Canada know either.
(To be fair to the doctor, he did end up telling me if I were going to look things up on the Internet, use only the most scientific articles. In fact, the more scientific, the better. But I didn’t mention to him I’d rather read something I can understand as opposed to something that would end up reminding me of a university science textbook.)
Since I have been told the news, I’ve read quite a bit about the disease, and not all on the Internet. Reader’s Digest had an article about it last month (they quote a guy from Canadian web site called CanLyme quite a bit). CBC has had stories about it. There are quite a few problems when it comes to Canada’s doctors and Lyme disease. They include:
For starters, apparently there are a lot of people with Lyme disease that are misdiagnosed. Keep that in mind as you read the next few points.
Another problem comes with exactly how rare the disease is (which ties into the first point). In the States, there are almost 30,000 cases of Lyme disease a year. But in Canada, that number is between 40 to 60. How can there be such a difference? Is there some sort of electronic fence at the border that wipes out ticks carrying the disease so it doesn’t enter Canada? It just doesn’t make sense.
I’ve been speaking to a lot of nurses at the clinic I go to each day for my IV (I have a PICC line in my arm for the IV). One of them told me that Lyme is grossly misdiagnosed, and another told me a story of a friend of hers that has a doctor that won’t order a Lyme disease test, even though the friend is pretty sure that’s what he has.
At some point, doctors kept asking me about a rash. Apparently, people with Lyme disease get a bulls-eye type rash on their bodies where the tick bite was. But according to Reader’s Digest:
“Another problem is the prevalence of the rash, or erythema migrans. The Public Health Agency of Canada says that 70 to 80 percent of those infected get it. However, statistics from some U.S. state health departments, including Connecticut’s, found the rash to be present in only 35 to 59 percent of Lyme patients.”
For the record, the City of Ottawa also uses the 70 to 80 percent number. So don’t believe you need the rash to have the Lyme disease.
Did I have a rash? I don’t know. I play a lot of ball hockey, mostly defence. And I block a lot of shots. I’m like Hal Gill, without the offence. And a day after a game back in October, I have a bulls-eye circle on my stomach. I remember blocking a shot at that spot the night before, so I didn’t think much of it. My wife was more concerned. Now we wonder if it could have been a tick bite. I still say no, but she says yes.
But at no point in the few months leading up to the rash, was I ever in a situation where I could have gotten a bite. Hadn’t travelled for more than two months before. Haven’t been camping in four years or so. Don’t go fishing, hiking, hunting, trail walking, etc. So we have no idea where I could have gotten the bite. As well, my first symptom didn’t show up for about five months after the mark, so that’s a bit of a wait.
Testing is also a big problem. While it’s accurate in people with Lyme disease (75 to 93 percent of the time), it also gives a false positive in 55 percent of people who don’t have Lyme disease. In a Globe and Mail article from 2005, an Ottawa professor talked about being misdiagnosed, getting testing in the U.S., finding out she does have Lyme disease, and not have any doctor in Ontario listen to her and treat it.
So I have Lyme disease. From what I’ve read of what other people go through, I got lucky. It looks like I may not recover for a few months. But I still think doctors need to become more informed about this.
And doctors with the infectious disease unit at the Ottawa Hospital should be able to answer a few questions about the disease.