That's really quite incredible.
Evidence of meeting #30 for Health in the 41st Parliament, 2nd Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was tick.
A recording is available from Parliament.
Evidence of meeting #30 for Health in the 41st Parliament, 2nd Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was tick.
A recording is available from Parliament.
10:15 a.m.
President, CanLyme
We hear that from doctors and from people from coast to coast, that IGeneX can't be trusted; they're offering positive results just for a fee; they're a for-profit lab; therefore, they're not to be trusted.
I don't think Canadians in general understand the testing process currently in practice in Canada. Our Canadian labs don't develop their own ELISA test and Western blots. They buy pre-manufactured kits. These pre-manufactured kits are from corporations who are for-profit corporations in the United States and in Europe.
Now, we approached one of those corporations in writing and asked them specifically why their test only incorporates Borrelia burgdorferi strain B31 as the foundation of the test. Why aren't they incorporating more strains to reflect what's out there in nature? They told us in writing that they are dictated to by the United States Centers for Disease Control as to what they can include in their testing in order to be licensed to sell to governments.
10:20 a.m.
NDP
Libby Davies NDP Vancouver East, BC
Can I just ask you one other quick question so we can get it on the record?
Are there any other amendments to the bill that you would like to see? This is our opportunity to hear from you about what they are so that we can consider them. You've looked at the bill. We've talked about that paragraph 3(b). I understand what you're saying. Is there anything else in here that you think...?
I mean, when a bill is drafted, the sponsor has the best intentions, but I can tell you that when we all do our bills, there are often things that are consequential that you didn't know at the beginning. Is there anything else that you think needs to be modified or improved?
10:20 a.m.
President, CanLyme
I think if we clarify the patient's role in and around what will be called best practices, the patients and their experts, then I think it's a very good bill.
10:20 a.m.
President, CanLyme
I just also wanted to point out that when I asked that company why they did not incorporate that, they told me that...because the United States Centers for Disease Control, but they also said in writing to me that if we want broader testing, they suggest we contact IGeneX , a lab in northern California.
Now, the word across Canada is this is an unaccredited for-profit lab. That is wrong. They are a fully accredited, certified, proficiency-tested laboratory, run by Ph.D. microbiologists. They use multiple strains in their Western blot, unlike Canada. That is why they're having much more success. They also are the only lab we're aware of in North America that is using strain 297, which is a human-derived strain out of the cerebral spinal fluid of a woman with Lyme disease. All other strains used in tests in North America are tick-derived. We think, from a microbiological perspective, that has considerable significance.
I just thought I would put that in.
10:20 a.m.
Conservative
Eve Adams Conservative Mississauga—Brampton South, ON
Thank you very much. I'll be splitting my time with Mr. Lunney.
I'd like to thank all three of you for coming forward.
Mr. Wilson, you certainly have vast knowledge on this issue.
Ms. Bottles, your extraordinary experience, with the support of your mother and your family—you're very good people. I feel terrible for what you've been experiencing. I want to commend you for sticking with school and graduating. Hearty congratulations on that front. I know just from how well spoken and how poised you are, and what an outstanding advocate you are on this front, that you are really going to do great things. So congratulations on that.
I'd like to focus a little bit on your journey, Ms. Bottles. You contracted the disease. What were those first days like? How long until you finally went to the doctor? Just if folks are looking up the record and are trying to self-identify here, what were the symptoms you felt in those first days? How long until you finally went to the doctor? What were you presenting with?
10:20 a.m.
As an Individual
It was a progression of a thousand knives. One day it was “I'm a little bit more tired”. The next day maybe a particular joint was hurting. It wasn't like one cataclysmic event.
To be honest, I've had health problems since early childhood, so I think I've possibly been sick for most of my life. But I guess I realized I was having quite severe breathing challenges, which is associated with Babecia, in addition to Lyme disease. Babecia is a co-infection. I don't know if you've gotten there yet.
I sort of developed a flu-like illness and bronchitis and pneumonia in 2008. That's when I never got better. That's the story we hear so often: someone got a weird summertime flu or a flu-like illness and then they just never recovered. They had another unrelated health problem and they never got better.
10:25 a.m.
Conservative
10:25 a.m.
Conservative
Eve Adams Conservative Mississauga—Brampton South, ON
I do want to thank you for sharing your health experiences. I know it's particularly trying.
You then went to the United States. You saw the physicians who diagnosed you with Lyme disease and then you had the treatment there in Connecticut for 10 months, I think you said.
How did you find that treatment? How quickly were you recovering?
10:25 a.m.
As an Individual
I have a lot of short-term memory problems, so I actually don't remember anything that's happened after June of 2008. If I could pass that question on to the lovely lady on my left, that would be great.
10:25 a.m.
Conservative
Eve Adams Conservative Mississauga—Brampton South, ON
Of course. I don't mean to put you on the spot.
10:25 a.m.
As an Individual
When we went to Connecticut, Nicole doesn't remember going there. She doesn't remember living there. She doesn't remember her doctors. If you put into a room those four doctors who were in Seattle, San Francisco, Connecticut, and New York state, she would never recognize them, and she has met them multiple times. That's how severe her short-term memory loss is.
If you asked her what year it was right now, she wouldn't have a clue.
10:25 a.m.
As an Individual
In terms of the onset of symptoms, it started off slowly but then the symptoms multiplied in 2008. She went from sort of having these flu-like symptoms in February of 2008 to a wheelchair by April. I could see that the medical profession was not going to get to the bottom of it, and I lived in the States for 22 years—I am Canadian, but I lived there for 22 years—and I just said we need to do something else. I actually thought she was going to die. That's how sick she was. She's still in treatment. I want you to know that she still is being treated. She's had a PICC line.
So it's not like she lived 10 months in Connecticut and, wow, all hell broke loose and she's fantastic. That was just the start of her being brought back to life, shall we say.
10:25 a.m.
Conservative
Eve Adams Conservative Mississauga—Brampton South, ON
Thank you for sharing your story. I can see by the anguish on your face just how stressful it is to relive watching your daughter suffer, so thank you very much for coming forward to share this.
Mr. Lunney.
10:25 a.m.
Conservative
James Lunney Conservative Nanaimo—Alberni, BC
Could you give me an indication, Mr. Chair, of how much time I have to work with?
10:25 a.m.
Conservative
James Lunney Conservative Nanaimo—Alberni, BC
Mrs. Powell or Nicole, could you give us an indication of what does treatment currently looks like? Are we talking about antibiotics, long-term antibiotics? What does treatment look like?
10:25 a.m.
As an Individual
Yes, we're definitely talking about long-term antibiotics, IV antibiotics in Nicole's case, and oral antibiotics. She has managed to survive that, shall we say. She did have an episode of pancreatitis in 2012, but that resolved in three days. Yes, it's a health risk, definitely, antibiotics; I completely agree. During her lifetime before she became ill with Lyme disease, she hardly ever had antibiotics.
It wouldn't be a choice that I would want for anyone, but I think without question it saved her life.
