This week, I changed much of the tech behind this site. If you see anything that looks like a bug, please let me know!

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.

On the agenda

MPs speaking

Also speaking

Jim Wilson  President, CanLyme
Nicole Bottles  As an Individual
Christine Powell  As an Individual

10:25 a.m.

Conservative

James Lunney Conservative Nanaimo—Alberni, BC

Thank you for that.

Mr. Wilson, did I understand you correctly that you contracted Lyme in Dartmouth, and your son caught it in—

10:25 a.m.

President, CanLyme

Jim Wilson

My daughter and my son caught it within a year of each other in British Columbia. I contracted mine in Dartmouth, Nova Scotia.

I was sick for years before they finally figured it out. It required lengthy treatment for me to get my life back, but I was to the point where I could hardly walk. I choked on my food. I drooled when I talked. My mind had completely left me. I got in my car to go somewhere one day and my wife found me sitting out there half an hour later. I had no idea I had to put the key in the ignition.

I was 38 years old and I figured that was it, my life was over. My legs were rubber. I wasn't stable on my feet.

10:25 a.m.

Conservative

James Lunney Conservative Nanaimo—Alberni, BC

In terms of your recovery, are you still undergoing any kind of treatment?

10:25 a.m.

President, CanLyme

Jim Wilson

No, I'm not.

10:25 a.m.

Conservative

James Lunney Conservative Nanaimo—Alberni, BC

So you sound like you've fully recovered.

10:25 a.m.

President, CanLyme

Jim Wilson

I've recovered 90%. I still have some issues, but they're minor compared with what I was living like.

10:25 a.m.

Conservative

James Lunney Conservative Nanaimo—Alberni, BC

You had a very disappointing experience with the use of the term best practices. I understand that fully. We are quite aware of other examples where experts have not been up to dealing with emerging diseases, with different concepts. We're stuck in old models, and apparently we don't know everything yet, so we ought to remain open to examining issues. I understand your frustration.

But we're going to have to call it something. Standards of care can be just as bad, if they won't change, as best practices.

10:30 a.m.

President, CanLyme

Jim Wilson

Absolutely—so long as it's understood it's collaborative and the patient does have input.

10:30 a.m.

Conservative

James Lunney Conservative Nanaimo—Alberni, BC

I certainly understand why you'd get an allergic reaction to that term, but we're hoping we can help you get back there, because we really do need best practices—that actually work.

10:30 a.m.

President, CanLyme

Jim Wilson

True. I agree.

10:30 a.m.

Conservative

The Chair Conservative Ben Lobb

Thank you very much.

Ms. Sgro.

10:30 a.m.

Liberal

Judy Sgro Liberal York West, ON

Thank you so much.

Ms. Bottles, I recall meeting with you some time ago and your mom and others, and I never did forget that meeting. I think you know we're all tremendously sympathetic and we really welcome this opportunity put forward by Ms. May to do whatever we can to move this issue forward.

It doesn't make sense that you have to be here championing this issue, either one of you, for what you've gone through, but no one's going to question why God puts us where we are. There will be a special in heaven for all of you for the work you're doing on behalf of thousands of other people.

May I start with Mr. Wilson? Is there any connection at all to the horrific thing that you and your family have had to endure between your son, your daughter, and yourself? Have they been able to find anything in your past, or hereditary conditions, or anything? I'm sure they look for ways to blame it on many other things. How is it?

10:30 a.m.

President, CanLyme

Jim Wilson

There hasn't been anything that they've been able to relate genetically. There is some suspicion that there is a genetic tendency in people who experience this chronic form of Lyme that is more difficult to treat. But such a huge percentage of the population carries that gene, what do you do with that information?

So we find that the most significant thing is the fact that we have a lot of Lyme out there and there are different strains. My sickness did not look like my daughter's, and my son's did not look like my daughter's or mine. Is that strain-related? Is that individualized to the individual? Is it dependent upon where in the body the organism has taken up its primary residence? Those are all things we don't know. There's so much about this organism that we don't know. We know nothing about these newly discovered ones.

I brought this little vial here just to give an example. Up until just recently, Borrelia bacteria were thought not to be passed from the mother tick to the egg. So these tiny little speck-like larvae you didn't have to worry about; it was the next-larger size, the nymph, which is easier to see.

But in this new Borrelia, Borrelia miyamotoi, the mother tick is able to pass this transovarially to the egg, and if she's infected and the eggs are infected, those larvae are hatched infected. In here, there are 65 little specks. These are the larval ticks that could be infected. If you look at them, you'll see that not only are they the size of a period at the end of a sentence, but they're almost see-through, transparent. They're flesh-coloured. So if they're on you, the chance of ever seeing one of these is very slim. So that's extremely worrisome.

Are there other Borrelia out there that we have not known about, or haven't properly investigated, that may also be passed transovarially? There's just so much we don't know. We don't know how Borrelia miyamotoi responds to antibiotics. No tests have ever been done. We don't know how severe the symptoms can become from Borrelia miyamotoi.

We also don't look at Borrelia hermsii, Borrelia bissettii, Borrelia curtainback, Borrelia californiensis, carolinensis. We have lots of Borrelia. Decades of focusing on Borrelia burgdorferi, strain B31, that's used in the test.... I want to point out that this is a laboratory strain. It's a non-wild strain. If we're going to be doing proper human diagnostics, we've got to be using today's best technology to measure what they're running into in the wild, not a cloned replica in the laboratory, because it's been washed out.

There's a lot that needs to be done. A lot of this we have been stating for years, not on our own but with the backing of our experts on four different continents. We collaborate with experts and all kinds of fields of science. We're also working with the G. Magnotta Foundation, a newly formed foundation in Toronto, to begin to do the first human tissue study program, where we're going to use today's most advanced DNA technology to start looking in the tissues of these patient groups with MS and Parkinsonism and Lou Gehrig's and Alzheimer's and chronic fatigue syndrome and fibromyalgia.

But we can't do it alone. This is an enormous undertaking. We have developed protocols. We've worked with scientists on those four continents who have helped us put this whole protocol together. It's going through the process right now. But we cannot do this alone. We're going to need the assistance and the collaboration of governments for this. It has to be done. We're talking about a huge number of people and an incredible financial hit to the Canadian economy. That's already under way. We just have no way of measuring it at this point.

I think if we use today's next-generation sequencing technology we will begin to understand that. I can use an analogy that one of the Genome Canada-funded scientists gave to me to explain what they are capable of doing. He said that right now the Western blot is like using a magnet to go over a haystack looking for the needle. There are a lot of variables in there as to whether you are going to find that needle or not. But using new next-generation sequencing, not only are you going to immediately find the needle but you are going to be able to identify every piece of straw in the haystack and every living organism on every piece of straw in the haystack.

Now, that's powerful technology, and that's what we need to be using to move these health issues forward. Nobody is satisfied with Lyme disease; and the argument isn't just whether we should have long-term antibiotics or not, because we know, too, that's not the answer in some cases. It is certainly beneficial to the majority who suffer from this chronic disease after the short-term treatment process, but there are others who still for some reason are struggling with the treatment and not responding. So there is a lot we need to do.

Currently there has been an avoidance of looking in the human, and we've got to get back to that, because that was the foundation of science. We've got to allow the other foundation of science, out of medicine and health care, to be put back in the system, which is allowing that doctor with that patient to use that physician's best judgment and not be overshadowed with this threat that currently the doctors are under. We have probably heard that 100 times a year from patients getting it related to them by their physician: “No, no, I'm not diagnosing Lyme; I'm sorry, you will have to go south of the border or somewhere else. I'm not touching that. I have a licence, and I have children.” Those are the comments we get.

So I think we can really improve things and move things forward better if we work collaboratively. We have a great deal to offer in that regard.

10:35 a.m.

Conservative

The Chair Conservative Ben Lobb

Thanks very much.

I just want to mention as well in regard to amendments that my clerk has advised me that we are going to need them in by Monday at noon if they are going to be ready for Tuesday. I just put that out there now and if anybody needs any clarification we can provide it.

Mr. Lizon, seven minutes.

10:35 a.m.

Conservative

Wladyslaw Lizon Conservative Mississauga East—Cooksville, ON

Thank you, Mr. Chair. I will share my time with Terence Young.

I'm a little bit confused here, because I don't think we have enough knowledge. I'm not a medical expert, and therefore in regard to all the information we've been given it would be nice to hear from the medical professionals and scientists about actually where they are currently.

I understand that we hear your side of the story and you are on the receiving side of the line. But there is the other side, and I don't know whether we should assume that there is a group of doctors who don't want to work in good faith or if there is something that has not been developed.

I just checked what is happening and recommended in Germany, for example. The Robert Koch Institute as a diagnosis recommends two stages. First, they do an ELISA test before they recommend to do the Western blot. Therefore it would be nice to hear from our scientists what is available, where they stand, and how they collaborate with scientists around the world, because this is probably not working in bad faith but we are probably not there yet where we can provide easy testing to the patients.

I understand your frustration, but the question I have is this: if you had a knowledge of how to prevent it, would it prevent your disease or your kids' disease?

10:40 a.m.

President, CanLyme

Jim Wilson

What was the question again?

10:40 a.m.

Conservative

Wladyslaw Lizon Conservative Mississauga East—Cooksville, ON

If you were aware of the tick bites and paid attention, would it prevent your disease?

10:40 a.m.

President, CanLyme

Jim Wilson

Do you mean, if I knew I had a tick attachment, what would I do at that point?

10:40 a.m.

Conservative

Wladyslaw Lizon Conservative Mississauga East—Cooksville, ON

That's correct.

10:40 a.m.

President, CanLyme

Jim Wilson

I would insist on antibiotics before they identify the tick, before they have the tick tested, or certainly before an ELISA is run, because the human does not build antibodies to this bacteria until four to six weeks after infection. By that time, the disease is disseminated into your system.

10:40 a.m.

Conservative

Wladyslaw Lizon Conservative Mississauga East—Cooksville, ON

Well, let me tell you something. I travel to Europe quite often, and if you go there you can see—especially in the summer on TV—ads very often, many times a day, saying that if you have a tick and it is identified, go to a doctor; don't try to remove it yourself. You are given antibiotics whether you like it or not; that is the procedure. Also, if you decide to remove it yourself, they show you how to do it properly, because you can leave part of it in your body, wherever the bite is, and the removal of it is ineffective.

This is happening there. I don't know why it shouldn't be happening here. That is where I was coming from.

Had you known, would this have helped you and your children—or you, Nicole?

10:40 a.m.

As an Individual

Nicole Bottles

Absolutely. I wish I had listened when we did a little research about Lyme disease a while ago and I met a deer in the forest. My mother said, “Oh, you could contract Lyme disease”, and the end of the argument was “But it's treatable with antibiotics”, and I wasn't concerned.

Of course I wish I had known that something so small could have such an impact.

10:40 a.m.

President, CanLyme

Jim Wilson

The point also is that most people whom we hear from do not know they have had a tick attachment; they are completely unaware that they have encountered a tick.

If you look at the biology of the tick and what they're capable of, you learn that if a tiny little nymph tick crawls on you—they are already only the size of a poppy seed, and as you see, the larvae are much smaller than that—the first thing they do when they find a place to feed on you is inoculate you with a freezing, and so you don't know they're there. The next thing they do, once they stick their nose parts in and find a blood source, is secrete a bonding cement, and so they're not brushed off easily. Then they sit there and feed, and they can feed for days unnoticed, because quite often they're heading to private areas, under hair or in areas you're just not looking at, such as behind the knee. Most people don't recognize it.

The ELISA is not a good first test, especially if we're only going to use an ELISA that is still just looking for Borrelia burgdorferi strain B31. If we're going to stay on that strategy, then we have to devise better ELISAs, because the one we have currently is missing most cases.

May 29th, 2014 / 10:45 a.m.

Conservative

The Chair Conservative Ben Lobb

Thanks very much.

Unfortunately, we've come to the end of our two hours. This will conclude our first meeting on Bill C-442. I look forward to seeing everybody else here on Tuesday.

Thank you again to our guests for taking the time to be here and for providing your information.

Thank you. This meeting is adjourned.