Evidence of meeting #59 for Health in the 42nd Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was lyme.
A video is available from Parliament.
Liberal
Doug Eyolfson Liberal Charleswood—St. James—Assiniboia—Headingley, MB
Again, it's too specific for the two and a half minutes I have left now. Would you be able to forward us the literature on the accuracy of that versus the standard Western blot?
Board Member, Canadian Lyme Disease Foundation
It's the reporting of the bands.
Liberal
Doug Eyolfson Liberal Charleswood—St. James—Assiniboia—Headingley, MB
Yes, the reporting. Is there literature that talks about diagnostic accuracy of one versus the other? Could you forward that to us?
Board Member, Canadian Lyme Disease Foundation
Each European country has a different standard. I can show you that.
I will forward information on the different European countries. Some choose three as positive. Some choose whatever number as positive. I can send you that.
Liberal
Doug Eyolfson Liberal Charleswood—St. James—Assiniboia—Headingley, MB
All right. Thank you.
Dr. Lloyd, we were talking about treatment and the guidelines we're using. There is some controversy as to how long you should be treating with antibiotics and whether chronic Lyme disease is a prolonged infection or whether there are in fact more side effects due to the original damage during the disease. I know there's controversy in the literature on that.
Both the National Institutes of Health and the Centers for Disease Control recommend strongly against prolonged antibiotics. Both of these organizations state that several well-controlled scientific studies have shown no significant improvement in outcomes with them, and a number of cases of people having had to be admitted to hospital due to complications of the long-term antibiotics. We know that antibiotics themselves have their own complications, if used inappropriately.
How do you respond to that? What is the research that refutes this from these organizations?
Professor, Mount Allison University, As an Individual
There are studies that show there was no improvement with longer antibiotic use. There are other studies that showed improvement.
I would point out that with some of the studies—
Liberal
Doug Eyolfson Liberal Charleswood—St. James—Assiniboia—Headingley, MB
I'm sorry, I have 30 seconds left.
Can you quote at least one of the studies that shows improvement? Can you tell me the author of that study?
Professor, Mount Allison University, As an Individual
I can certainly send it to you.
I will point out that the study that showed no improvement essentially repeated a non-productive intervention, and really, if something didn't work the first time, the odds of its working the second time are remote.
Liberal
Doug Eyolfson Liberal Charleswood—St. James—Assiniboia—Headingley, MB
On the NIH website there are actually several studies that they are citing. It's not just one; there are a number of studies.
Professor, Mount Allison University, As an Individual
Yes. They're both by Wormser.
Liberal
Doug Eyolfson Liberal Charleswood—St. James—Assiniboia—Headingley, MB
I just wanted to clarify that.
All right. My time is up. Thank you very much.
Conservative
Len Webber Conservative Calgary Confederation, AB
Thank you, Chair.
I'm going to refer to page 12 of the framework document. Under “Guidelines and Best Practices Key Messages Summary” it indicates that, “Doctors are constrained by the current guidelines and, in many cases, lack awareness of the disease.”
It also says, “Physicians who treat Lyme disease patients outside the existing treatment guidelines should be protected from sanctions from their licensing organization.”
Do you know of cases of doctors who are losing their licences because they're going beyond the guidelines, beyond the treatment? If so, how many are there?
Lyme Disease Advocate and Patient, As an Individual
We are aware of several doctors who have been harassed or sanctioned, not necessarily specifically for prescribing antibiotics, but sometime in other areas found during investigation. There are at least three doctors who have retired because of sanction or harassment, and there is one doctor who was investigated and harassed such that he ceased to see Lyme patients in his practice.
Conservative
Len Webber Conservative Calgary Confederation, AB
That's surprising, unbelievable actually. That is why, then, when you go they say they have nothing they can do for you: because they cannot go beyond the prescribed guidelines. That is hence why you're off to some other country to seek treatment there.
You mentioned that you spent $100,000, or hundreds of thousands, just on your treatment alone going to the States? Was it you and your children?
Lyme Disease Advocate and Patient, As an Individual
I spent about $300,000 on my own treatment and I have just had my kids assessed by a neurologist in Manhattan. That visit cost $15,000, to get them assessed and tested for all the different co-infections they may have, because treatment is non-effective if you're not hitting all the diseases. I've been told that they're going to require possibly one to three years of continuous treatment, which will cost tens of thousands more.
Conservative
Len Webber Conservative Calgary Confederation, AB
Wow.
Also, on page 12 the document says that there's a need, of course, for more Lyme-literate doctors.
How many Lyme-literate doctors are there in Canada who are treating? I know that Dr. Hawkins in Calgary has people lined up outside his door; he can't accept any more patients. Obviously we have a shortage of Lyme disease doctors.
Do you have any thoughts on that?
Lyme Disease Advocate and Patient, As an Individual
One other thing I'd like to say is that there are Lyme-literate doctors for adults, but there are no Lyme-literate doctors, to my knowledge, for children. Children who present with chronic systemic illness, such as my daughters, cannot seek help or treatment here in Canada. No child can receive help or treatment with chronic systemic illness in Canada, because we are told it does not exist.
Conservative
Len Webber Conservative Calgary Confederation, AB
Going back to my granddaughter and hiking again, I suggest that all Canadians stay the heck out of the woods, if that's the case, if there's no treatment for children for tick bites.
Lyme Disease Advocate and Patient, As an Individual
It's not that they're not going to be treated for tick bites. It's the children who weren't treated for tick bites who then get systemically ill, or the children who are born, in utero with this illness, who aren't going to get treatment.
Conservative
Len Webber Conservative Calgary Confederation, AB
Rachael, I know you had some questions. Do you want to throw anything out?
Mr. Chair, how much more time do I have?
Conservative
Len Webber Conservative Calgary Confederation, AB
There are many questions I have for the health agency on Thursday and for Blood Services.
Conservative
Mel Arnold Conservative North Okanagan—Shuswap, BC
The proposed framework highlights the current challenges associated with Lyme disease testing. What changes do you think should be made, that aren't listed in the framework, to testing, and so on?
