2016 Lyme disease conference breakout session 3: education and awareness

Conference to develop a federal framework on Lyme disease

May 15-17, 2016, Government of Canada Conference Centre, 111 Sussex Drive, Ottawa, ON

Conference day 2: Monday May 16, 2016, Freiman/Guigues room

Audio Recording


Kathleen: [00:00:00]

So when we get to the questions, which will be later on, I'll sort of alternate between those of us in the room and those of us that are joining us remotely.

Here's our agenda between now and 4:30. We're going to hear from two speakers on this topic, before break. That'll bring us to break time. Take a break. After break, there'll be two more speakers that we'll hear from, and then we're going to open the floor to your questions. And also, as my colleague Dan said, tomorrow we need to report on key messages from our discussion this afternoon on educational awareness, right? Because the other two groups are-they're not looking at that. They're looking at guidelines, best practices, and surveillance, so, we'll sort of have a little bit of a discussion on what are the key messages that we really want to share with the rest of our conference colleagues tomorrow? All right?

So that's were going to do between now and 10:30. I'm going to ask you to jot down your questions for the speakers, okay? Because we're going to hear from all four, get the whole picture that the four presentations convey, then we'll open the floor. So jot down your questions and remember this is also audio-recorded, so you'll always be able to have access after the fact, if you wish.

Probably don't need to remind you. Message has been conveyed a lot, is to continue to do what we've been doing, which is it's good to be hard on the issues, but, also, gentle on the people.

So I encourage you to speak the official language of your choice and the receivers are at the back of the room. Channel 1 English. Channel 2 is in French. Put your cells and BlackBerrys on silent mode, please. And the washrooms are right here, on your right.

Female: [00:01:47]

We're the lucky ones.

Kathleen: I know! This is a good thing about this room. I'll encourage you to stand up, and we are here for the rest of the afternoon. Feel free to stand up, move around. You know, you can stretch, stand, whatever works.

Okay. So, our speakers have each been given 20 minutes. The first two have a combined presentation, so they of course will have 40 minutes. Let me introduce them. Liz Zubek, who is a family physician, Shepherd's Hill Medical Clinic in Maple Ridge, British Columbia.

Welcome. And Alison Bested, who's Clinical Associate Professor at the Department of Medicine, the University of British Columbia.

Welcome, both.

Alison: [00:02:36]

It's a pleasure to be here today, and our topic is, as stated, the creation of standardized educational materials for public healthcare providers regarding the prevention, identification, treatment, and management of Lyme disease, the educational gaps.

We have no disclosures.

These are the things that we identified as being gaps. Number 1: The need for a clinical case-definition to diagnose and treat patients with Lyme disease and tick-borne diseases. We currently have an epidemiological case-definition of Lyme disease. We need better understanding of the pathophysiology of the Borrelia bacteria. Currently, we don't know enough about it in acute and chronic infections. We need better laboratory tests for acute Lyme disease. Currently, none fits the bill. We need laboratory tests to monitor treatment when patients relapse, or when there's a second or re-infection. We need enhanced prevention and education strategies.

So, as you heard before, we live in Canada. This is what we're here for: the Canadian Lyme Conference. We know that ticks are present in Canada, and initially-I don't have a pointer, but you can see the little brown blobs-that's where we initially thought the ticks were located. They were called "endemic areas."

This slide is from Nick Ogden, who is giving a chat next door about surveillance. So I would strongly recommend you listen to that if you're interested. He came up with this proposal based on the ticks moving north because of climate change. We know our environment's getting warmer and we know that the ticks are surviving longer through the winter. So there are more ticks surviving. So, by the year 2020, you can see it's halfway up. By the year 2080, that's right up to the tree-line in Canada.

We know that the ticks have a cycle, and we know that the Borrelia bacteria lives within the ticks. So we start off on the left with eggs. They grow into the larvae. They have their first blood-feed in an animal, either a little bird or us or a chipmunk or a mouse. Then they basically go-they change into nymphs. They go back into the winter cycle. They come up in the summer. They have another feed, another blood-feed then they change again and they go back and they become the adults. Then they go into us again or deer or our animals. So this is the cycle that is happening with the ticks and this is what we're looking at.

So I got interested in ticks in birds when I had one of my staff about 15 years ago come into my office, and she said, "Can you have a look at my shoulder? I think I got an infected spider bite.

And I went, "Oh, okay."

And I had a look, and I'm a chronic-care doctor. So I have not-I never had seen an acute erythema migrans rash before that day, and I went, "Oh, my. Where have you been?"

And having this endemic area in my head, I went, "Were you here? There?"

And she goes, "No. I was jogging in the middle of Toronto in High Park."

So that's when I became aware of the possibility of this being carried in birds. We all love our birds. We love our robins, our songbirds, our thrushes. And this shows you with this little red circle, this is two little engorged ticks feeding off a robin.

This is a tick-infested dog, and I show this to you because we live with our animals. They sleep in our beds, they lick our faces, and we know, statistically, that it-that for every six animals that have Lyme disease, one person has Lyme disease. So we know that it's much more common than we thought. The veterinarians have captured the statistics on Lyme and we need to correlate that with our humans. And just be aware that wherever our dogs are, they bring it to us. We don't have to go anywhere.

There is also some concern about tick attachment. We now know that we don't really know how long it takes for a tick to attach. We used to think it was 36 hours and you were okay.

Female: [00:06:53]

Can you get closer to the mic?

Alison: Closer to the microphone. I'm …

Female: Or we could just increase the volume.

Alison: I'm getting a reverb here. When I go closer, I'm getting a real feedback.

Female: Getting the French translation in our ear.

Alison: I beg your pardon?

Female: I'm getting the French translator as the same time as you.

Female: Oh, that's what it is.

Alison: Okay.

Female: Sorry.

Alison: So what should I do? Speak closer?

Female: More volume. Ask if we need the French.

Alison: Because I'm getting feedback when I'm here. It's really booming in my ears, but I can do this if you like.

Female: (Inaudible).

Alison: What would you like?

Female: (Inaudible).

Alison: Maybe, yes …

Female: (Inaudible).

Alison: Speak more quietly?

Kathleen: (Inaudible). I think we're going to stick the interpreters. Maybe it's just a question of increasing the volume in (indiscernible) ears. Let's play around with it a bit and we'll see what we can do.

Alison: Okay.

Kathleen: And let us know if it continues to be a problem.

Alison: Okay. Good.

Kathleen: There's seats up here, too.

Alison: [00:07:43]

Okay. Yeah, if anybody would like to move up to the front, maybe it's easier not to hear the back reverb. Okay.

Okay. Anyway, talking about tick attachment, we used to think it was 36 hours, you had a couple of days and you didn't have to worry. But now we know by case studies that there can be rapid transmission of the Borrelia from the tick into humans and we think it's because in some ticks, they actually keep the Borrelia in their saliva. So it's right there as opposed to in their intestine. Makes a difference for us.

So, what do we know about Borrelia? Not a lot, but we do know that it is a bacteria. It's a facultative anaerobe, which, that means it does not like blood. It does not like oxygen. So as soon the tick bites us, it releases the Borrelia into our system. It goes as fast as it can out of our blood system, into the tissues. So where does it go? Everywhere. It goes into our central nervous system, our joints, our eyes, endothelial cells-which are the lining cells of our blood vessels. It goes into fibroblasts, which are the cells that help to form our muscles. It goes into our synovial cells, which are the cells that line our joints. It goes into our lymphocytes, which are our immune system. And it goes into our placentas.

This is an overview of immunity, and I apologize to my immunology professors because this is a very simplified version compared to what we now know, but if you see the cell on the bottom, this is a, this right here, this represents the bacteria. Here-the interpreters won't be able to …

Female: [00:09:24]

It's okay. Do you want to use that?

Alison: Okay, sure. So the green represents the bacteria-the Borrelia. So the Borrelia enters our body. We have these scavenger cells present, and these scavenger cells pick it up. They come along and they chew it, they digest it, and they give information from that to T-cells. These are called T-helper cells, and the T-helper cells basically digest the information. They say, "Okay. Which of the army of the immune system should we call in next?" So they call in the immune cells, which are the B-cells to produce antibodies, but this takes a while, because in us it takes anywhere from seven days to 21 days to give a good antibody response. It also calls in the acute arm, which is the cytotoxic T-cells, and these cells come along and they release cytokines.

Cytokines are proteins that have the ability to do damage to cells, and when they do that, they attack the cell that's filled with bacteria. And together, along with the antibodies, if they're present, they destroy the cell that's loaded up with this bacteria. Cell death occurs if we're lucky, and that's called apoptosis. So that's what happens in a normal bacterial infection.

What happens in Lyme disease is that the Borrelia has a wonderful ability to lose itself within us. So, the antigenic structure of the bacteria in the tick is different than the antigenic structure, the outer-surface protein, compared to what it's like inside of us. So, what happens is when the bug gets inside of us, it sheds its coat and it sheds its coat, which is this, here, and it puts on different antigenic structures. And over time, it evolves.

So, the first week it might have a lot of these yellow balls representing the yellow antigen. It has the ability to change. Then it produces pink antigens. Well, the body is still stuck back here producing antibodies to the yellow antigens. Then it evolves to producing the orange antigens, so our immune system is always a couple of weeks behind because it keeps changing.

It also has the ability to suppress our immune system. It has the ability to physically get secluded inside cells so that the body doesn't necessarily recognize it as a pathogen or as a bacteria. And it has the ability to inhibit complement-binding. Complement binding is part of our immune system in that it helps the blood to clot, and when things clot, the body comes into clean it up. So we don't have clotting happening, the body doesn't recognize it and you don't get, again, as good an immune response as you would normally.

So, we know that because of the bacterial infection, and the inability to sometimes mount an antibody response, that it was recognized that we had difficulties with our testing in Canada. And this is the Canadian Adverse Reaction Newsletter that came out in October 2012, and it states, "Lyme disease kits and limitations." And a summary of this, this is talking about the ELISA test-the serology test-looking for antibodies within a person's blood who's been exposed to a tick infection. So what they found is laboratory test is not the primary diagnosis for making diagnostic or treatment decisions for acute Lyme. Why?

Because the Borrelia has the ability to evade it by going through these different morphologies, and also it takes seven to 21 days. So if you get bit on Tuesday, a week Tuesday, he won't have enough antibodies there to look for. So, it said basically that the test, the ELISA, is supplemental to the clinical diagnosis of Lyme disease. And this the first time we heard about this from our own government.

So what is the ELISA test? Just to show you very quickly. We have a petri dish here. We attach an antibody to known bits of Borrelia. We take the person's blood here, we add it together. If there is an antibody present within the person's blood, it sticks. How do we know it sticks? Then we add a colour agent to show us that there was a reaction present. So that's the basic ELISA test. The C6 is enhancement of this particular test.

This is a newer test that's not available yet in Canada. It's called the "lymphocyte transformation test." One of the companies that makes it is the ELISpot test. It is available in Canada. We use this technology for tuberculosis testing. So, this is not a new technology and, in my opinion, I think we could adapt this for Lyme technology, and they've done this in Europe.

So what happens is basically you look for-you take the patient's blood-a person has memory cells that they've been exposed to the Lyme-you combine it with an antibody known to Lyme. You put it together in a petri dish. If it's positive, the cells will release cytokines. You add a colour changer to show the release in cytokines. So what this does is it shows you there's an acute infection and it shows you the level of infection based on the number of colour spots that are present.

Currently, we have our Western blot. Oops. Our Western blot, which is another serological test. In other words, it's looking for antibodies and just for an explanation, in case you don't understand it, we look for IgM and IgG antibodies. But again, this is often not great for an acute test, but it is helpful for a long, chronic test, situation where a person's chronically ill.

So, what happens is, we look for the different antibodies to different parts of the Borrelia. And if they're present they show up as bands. And currently we need so many bands of either IgM or IgG to satisfy the surveillance criteria, and this what we have been using in our epidemiological studies. However, and it is more sensitive than ELISA in early detection.

However, in Canada, doctors cannot order the Western blot for acute cases. We are stuck with ordering ELISA tests and if the ELISA test is negative, we do not get a secondary test. Also, the individual bands are not given to us in Canada. We are just told it's positive or negative."

The other difficulty we have in Canada is that this particular test, we're only looking at one of 12 species. We know that in the world that there are 13 different species that cause Lyme disease. So we're only looking for one of them. People travel and we know now that different areas are getting different kinds of Borrelia. So this is another deficiency in the test. So we wonder how many patients have we missed because we don't have all the different species present?

This last test is-I'm putting this up there-this test is in development now in the United States. It's called the Nanotrap test and I think it's a very interesting way of looking at testing. This is a direct test and you're actually looking-the Borrelia gets secreted through the kidneys into the urine. So you take the person's urine test, you add it to very sophisticated testing, which is a mesh that's combined with antibody. You hope that it sticks, and if it sticks, you add a colourmetric change, and you see it present, and then you validate it's present on a Western blot assay.

What's really helpful with this test is it's extremely specific and is also very sensitive. It's sensitive across all the different species for Lyme disease, and it's basically so sensitive because it's based on the-just want I make sure I get it right-the autopro outer-surface protein A, which is present in all the different species of Borrelia. So this might be a potential test that we can use in the future.

So Test Performance and Liabilities. We know that we want to find out if sick people are sick. This is called "sensitivity." In this particular case, the sensitivity was low. We could only identify 30 percent of people who were sick as being sick. This is "specificity." This is identifying healthy people as not being sick, or being healthy. So those are the two criteria that we need to have a lab test that's helpful. And these are how the tests stack up. So our sensitivity for this is the ELISA. It's 35 percent. That means 65 percent of people who are sick were missing. The Western blot's much better. The C6 Peptide is an improvement. The ELISpot is even better in terms of sensitivity. And the Nanotrap, this is looking at particles of dust. So it's extremely sensitive.


Liz: [00:18:40]

Hi. So I will talk now about the clinical diagnosis. I'm a family physician, so I see people in all stages of Lyme, from the acute presentation to early disseminated, late disseminated, and I live right here in the middle of these 13 red triangles. And I sent this map, just out of interest to my colleagues last year, because I'd already seen three cases of acute erythema migrans rashes. So I wrote to my colleagues in Fraser Health and I said, "Hey guys. I've already seen three cases of erythema migrans already, and it's July. And patients don't know we're in an endemic area." And I showed them this map.

Well, I got physicians from my region-right there-emailing me back, saying "Wow, Liz. It's not just patients that don't know. We physicians don't know we're in an endemic area." And one guy said, "I've been telling people there's no Lyme in BC. Thank you for this information." So when we're talking about educational aspects, this map is key. Public Health Agency of Canada map, it's on their website, but we doctors don't know about it.

Now, Lyme disease, as we talked about, is the next great imitator like syphilis. So you've already heard about the classic onset of fever, rash, flu-like symptoms, eye things, swollen joints, mental confusion, but, really, the Lyme disease manifestations are enormous. Here is the actual list of things that could occur with Lyme disease. So, yes, this is the next great imitator. And acute Lyme disease-we must educate that it is a clinical diagnosis.

So, first of all, educate to have a high level of suspicion. Certainly in those areas like where I live, but anywhere in Canada, the robins are everywhere, the deer are everywhere. It's being transmitted. So we have to have a high level of suspicion. If somebody comes in with a persisting flu-like illness, acute neurological disease, acute joint swelling, new heart disease … And another thing we need to educate about is that blooming' erythema migrans rash because how many of these do you think are erythema migrans?


Liz: Good for you. All of them.

Now, I'm a clinical instructor at the University of British Columbia, so I get a lot of medical students coming through for month-long rotations. So I love showing them the CDC website of erythema migrans rashes. And they all point to the target lesions and say, "Oh, yeah. That's it."

All the other ones that try and give me a diagnosis of "Uh, cellulitis, eczema, local …" None of them are getting it right off the CDC website. So these are graduating medical students. So we need to start our education right in the medical schools.

Now, over on the other side of Canada for me, in Nova Scotia, this was an interesting-it was a small study by (indiscernible), but this was children in a tertiary rheumatology clinic, so they had to be referred there to a rheumatologist because of their severe joint pain. And Nova Scotia is an endemic area, but only about a third of the referring doctors suspected Lyme.

And all of these-very interesting-that there were only four of the 17 that could remember a tick bite and only three of the 17 had that erythema migrans rash. Yet all 17 were found to have Lyme, and five of them had neurological symptoms that just nobody had picked up. So the conclusions of this Canadian study were educational initiatives should be undertaken to increase local awareness of this treatable cause of arthritis in children. Education.

Now, we're not much better over in my end of the world. Bonnie Henry did this study in 2007 surveying 1,673 doctors, both family doctors and specialists, in British Columbia. Now, look at this: only about a quarter knew that if you had erythema migrans it was diagnostic of Lyme. Now, look at how many people would not be treated if the doctor saw an erythema migrans rash. If there was a laboratory testing, they were not giving the patient antibiotics. Almost half of doctors, even diagnosing erythema migrans, were not giving the patients antibiotics.

The results are really poor when you get further down the list of questions. So, again with the erythema migrans rash, that's diagnostic. You don't need a lab test. Less than 10 percent of our doctors knew that. And the other thing that only 10 to 15 percent knew was about possible co-infections. You've heard a lot about co-infections there, and they specifically asked about co-infections with Anaplasmosis.

So, this guy here actually goes to my church, and he was missing on Sunday because he'd had this horrible flu-like illness that was unremitting, he could barely lift his head off, and it was far more than the unusual flu, and he had this for about 10 days. And so I talked to him on the phone-and his wife-and I said, "You know, go into the emergency department. Get checked out for meningitis. See if there's an acute infection going on. If they don't find anything, though, you're a fisherman, you're in all the watersheds. We've got to also think about Lyme or Anaplasma."

So, he went to emerge, and he said to me, "The emerge doc told me, 'Lyme is only east of the Rockies.' They sent me home and told me to take aspirin for the flu. I knew there was something very different going on in my body." This is a highly educated man. I think he's working on his PhD right now. But send him home with aspirins.

And what we did was I followed up with him two days later and he said, "Oh, well, they said, just to placate you, Liz, they would send off a Lyme test. So we're waiting for the Lyme test." It's like, "No! It's going to be negative." So, I started him on antibiotics and after over 10 days of this horrible illness, within about 48 hours there was dramatic improvement, but it took him about two months to get fully better from that episode.

Now, three months after that onset, I got back his positive Anaplasma test. Now, imagine if we had waited for the test results on that Anaplasma. This could be fatal. And co-infections, as you've heard, are an important part. This is the Lyme Disease Conference, but it really should be the "Tick-borne Disease Conference" because Lyme goes around with these co-infections. It's kind of like hanging out in gangs. They run together in packs. And we could look at this study.

This study looked at the unfed ticks, the fed ticks, and then the rats that they bit. They found 237 bacterial genera that were in all three stages, meaning, they're not just in the tick, they are in you after you're bit. So, co-infections aren't an unusual thing. It's pretty much the norm to have something else coming around. And we joke that ticks are nature's dirty needle.

So, with co-infections, this interests me a lot, clinically, because I like to play "Spot the co-infection" in people, because when you get to know them, and you've seen hundreds of patients like this, there are very predictable clusters. And again, this is something they don't teach you in medical school. They don't really teach you anywhere about the presentations, but my students, when they come in, within two weeks they're saying, "Oh! That sounds like Babesia. Oh! That's a Bartonella picture." They're picking it up very quickly if you know cluster.

And, for example, Anaplasma comes on really quickly. The acute onset fever, worst flu of your life. This one-Bartonella-this is a sneaky one because this is the patient that's often sent to the psychiatry ward because they have got everything. They've got bizarre neurological symptoms all over that just don't make sense. There's often a lot of psychiatric issues. New onset of anxiety, anger, irritability. They're not the same person.

They have visual symptoms that they're embarrassed to tell me about, but I can't believe how many acknowledge it when I tell-when I ask them, because they'll feel like they need three sets of glasses. Because the glasses they wear in the morning-I hear a yell down there-the glasses they wear in the morning don't work in the afternoon, and then they need a different set of glasses at night, and they're switching between them, and they don't want to tell anybody because it makes them sound even crazier.

Deep bone pain off in the soles of the feet. Sometimes the lymph node swelling, the day sweats, bowel issues, bladder issues, ribcage pain. So you can see how a doctor might think, "Oh, you're just crazy," when you've got this.

Now, the interesting thing that I'll find, though, in treating is that I might start treating Lyme and then some of the real Lyme symptoms go away and then, all of a sudden, a patient develops this picture. They've got the new visual changes, new onset anxiety that they've never had, and I go, "A-ha. We've killed off one gang, so another gang has taken over the territory to be prominent."

And so I'll switch up my regimen a little bit just to make sure I'm covering Lyme but also Bartonella. And then a month later, they come in saying, "Well, Liz. Now my vision's better, my anxiety's better, but my sweats have changed from being in the day to drenching the bed at night. I've got this air hunger like I can't get enough air in. My headache that used to be like a mohawk is now like a crown. I've got these vivid dreams." So they come down with all of these new symptoms and I go, "A-ha, sounds like Babesia," which is very difficult to test for.

Another one that's common that I see is chlamydia pneumoniae. That one, if anybody has fatigue that is really, really severe, and they actually say the fatigue is more disabling than their pain, I really think about a co-infection with C. pneumoniae. Also, if somebody's picture is MS-like but not MS, and I always send them off to the MS clinic and they come back going, "Yeah. Liz, it's not MS, but it sure is like it."

Alzheimer's-like and very often respiratory issues or chronic asthma, I like to look for the C. pneumoniae. And we've got an accredited lab in Canada which will do DNA PCR testing. And then I confirm it with an ELISpot test-that lymphocyte transformation test-with a European test. Both of these cost the patient about $200. But again, the number of times that I'm suspicious of it in presentation and then I'm finding it on both these different tests is huge.

Another common one I see is Mycoplasma. Very often I think-well, I think of it also if there's a lot of fatigue, the asthma, a lot of neurological symptoms, and they've got a lot of autoimmune issues. These people you'll often find a positive IgM for Mycoplasma in their blood that never changes. You'd heard before that IgM, you get in maybe in that first four weeks of an infection, except in somebody with Lyme. Well, these people, their IgM just stays positive, positive, positive, and then again I go to a $200 test in Canada for DNA PCR and we pick up Mycoplasma in the blood and in the urine. Very common.

So, I'd like to put this in perspective by giving you a case. Now, I'm a family doctor, so this little boy Donny was my patient since he was born, part of my practice. And while you're listening to this, I want you to put yourself in the position of either being me, his family doctor, or of being little Donny's parents. Don't put your public-health hat on; think about being one of us.

Little Donny at age four, Mum came in. She's a very chill mom, doesn't worry about much, but she says, "You know, for this last year it's been escalating, and he's now waking up from his naps screaming with pain in his legs and feet. He's screaming, "It's broken! It's broken!" His pain was like an 8 of 10. His personality changed. He was hyperactive, volatile emotions. He was supposed to start preschool and Mum said, "There's no way I can put this kid in preschool. He's not ready. He's not learning anything. He can't socialize. I'm really worried he won't make kindergarten next year." Constant headache and the only neurological thing was this one eyelid that kind of variably drooped.

Asked her, of course, about rashes or insect bites. She couldn't recall anything. So, what do you do? A very broad work-up for this little boy. So I ordered a lot. Really pretty non-specific what we got back. Mycoplasma, IgM was equivocal, I will note there, and it actually was equivocal the next time we did it.

Now, for the first two tests would be all that we normally get to do. The Borrelia ELISA and the Western blot, they were reported back as negative. Now, I actually managed to get a C6 antibody test. Most Lyme patients know that if they tell you that they've been to Europe, then they can go on and get a C6 test. If they don't tell you that they've been to Europe, then that's not allowed in Canada. So, a lot of people will say that, and then I'll find out later, "Well I had a dream about being in Paris and the Eiffel Tower."

Anyway, so we got the C6 test. It was reactive. Bingo. Well, not really because in Canada, even if you have that C6 antibody test positive, they then go on and test for two very specific bacteria: the two European ones, garinii and afzelii, and if those are both negative, they come back and they say, "No, sorry. This actually a negative Canadian test."

So, what would you do? You are Donny's mother or father, or you're the doctor. What are you going to do right now? Little boy taking maximal ibuprofen and Tylenol, and it's not controlling his pain. So, I sent him to a pediatrician with a sub-specialty in neurology, and I went for that lymphocyte transformation test, the ELISpot, for Borrelia because I was pretty suspicious. Now, there we go, plus-five. Anything over two is considered positive. He was plus-five on two of the different lymphocyte transformation tests. That indicates that his immune system had cellular activity against Borrelia burgdorferi. Okay.

So, now while I was writing in his chart to the pediatric neurologist, I found-tucked way back-this little walk-in report a year ago. Remember, it's been one year of escalating symptoms. One year ago, this very relaxed mom brought him in with an insect bite. Now it must have been some insect bite for a mom of four to bring her kid in. "Insect bite with a large, unusual local reaction. A-ha! There's the erythema migrans, I bet."

But Mum didn't remember the bite a year later. She didn't remember the rash. So what did we do? I'll explain a bit about why I did a triple-protocol later, but I started him on this, and I started at the lower end of Amoxil, in trial, and I talked with the pediatric neurologist who said, "Liz, you've done everything I would do. Go ahead and treat for Lyme because I got no other possibilities here."

Now, four weeks in, Mum made a mistake. She forgot to give him his Sunday morning dose. So, she doubled it Sunday night. Wow. Two days without pain and eye droop, the next two days after that. So she came in saying, "Double the dose! Increase the dose!" Now we're still within the range, 50 to 100, but I went from 50 to 75 milligrams per kilogram per day. Now this is at the end of four weeks' treatment. Many people would stop after four weeks, if they listen to IDSA. At eight weeks, decreased severity of pain. Some days, he was back to the original Donny. He had more good days than bad, and the interesting thing Mum noted was that eye droop. If he had the eye droop in the morning, it was going to be a rough day. If there was no eye droop, he was going to be bright and back to his old self.

So, we did a risk-benefit analysis because of course IDSA says, "You've had eight weeks of antibiotics. That should be enough. You haven't had a combination therapy. Stop now. What's the research?" You're his parent. What are you going to do? He's not back to normal. He's made so much improvement. What are you going to do? So, you analyze the risks and the benefits. And we made the decision to continue. Twelve weeks: happy, sparkling, interactive. The family that saw him at Thanksgiving said, "This is a different child," when they saw him at Christmas. Lid droop had been gone for 11 days. His pain had changed its location from his feet and toes to his knees, so we tweaked the regimen a little bit, and at 16 weeks, okay, he's so much better, we're going to try him off antibiotics. That's reasonable, right?

Well, two and a half weeks later, eye droop, leg pain, crying, tantrums, anger, bed-wetting. Two and a half weeks after stopping antibiotics. Now, IDSA says, "We're not going to re-treat." What's the benefit of re-treating? What are you doing? What is your plan for this little boy? Well, Mum and I decided to try treatment again, and he did have a partial response. It wasn't as dramatic as the first time, though, so we thought about resistance or tolerance, tweak the regimen a little bit. A naturopath gave him some herbals alongside.

Within four weeks, there was dramatic improvement with this. Now, at nine months, we stopped all treatment. He was fantastic. This boy that couldn't even enter preschool the year before was excelling. He was top of his class when he went into kindergarten. Socially, he was making friends all over the place. It was brilliant. And we stopped the antibiotics.

Six weeks later, we wanted to do that confirmatory ELISpot and it was zero on all levels. Remember, it had been five on two of those different tests? It went to zero. So this test not only showed that his body was reacting to it, it also-it matched my clinical impression at the beginning, and it matched my clinical impression that he was resolved at the end. I love this test. We talked about it at the Best Brains Exchange. We really need to think more along these lines for monitoring improvement.

It's a year later now, and I'm happy to say, I saw Donny very recently and that improvement is sustained.

What do we learn from a case like this? Well, education. The initial doctor missed the erythema migrans rash. If we could educate about that, think of how many cases we will prevent. The other thing is our test failed. Even though that C6 was reactive, it came back as being negative because those European tests weren't there. So, he was given a negative Canadian test, and it was the clinical aspect that led to treatment. And, as you saw, the treatment had to be individualized and flexible and going with what his symptoms were.

So we did what was called an n-of-1 trial, meaning it's that one person in front of you. What are the symptoms? What's the risk-benefit analysis? What are we going to do in Donny? That's an N-of-1 trial. And, there are life-changing benefits to not giving up. I think it's pretty obvious from this case scenario that this was life-changing for him.

So what are the educational needs? Physicians, you know, it's one thing to talk to physicians about how do you treat an acute tick-bite, or how you treat erythema migrans rash. What do you do when it's a year later? What's the treatment for chronic Lyme? That's what's being asked at this conference. And I'll say I refuse to call it post-treatment Lyme because we don't know how long treatment is adequate. This makes it sounds like, "Uh, this is what you're left with. Roll over and die." I will not call it that.

For education, doctors need to know about tolerance and persistence. It's this thing called MDK, or "mean duration for killing." Generally, we doctors just think about something being susceptible or resistant. Will it kill the bacteria or not? However, here, it's susceptible versus tolerance. It's going to kill the bacteria, but instead of killing it quickly, it takes a longer time. So, this is the mean duration for killing. And susceptible versus persistent means that it might have a quick improvement, but then what happens afterwards that, all of a sudden, it slows down and again you need that mean duration for killing to really understand how long to treat.

So I won't go through all of this, but with persistence it could be time-dependent, it could be dose-dependent like you saw. We needed to increase the dose in Donny of his Amoxil. So there's a lot of different ways that bacteria can cause persistence and tolerance. This is a key, key slide for you to understand why did I give this little kid three different things.

Well, we all hear about the Lyme being that little spirochete, and it's got a cell-wall to it. However, it can also go inside our cells, lose its cell wall, and be intracellular and then that little L-form wraps up on itself, kind of like a ball of wool, forms this thing called a round-body-we used to call it a cyst-and that round-body hides deep in our tissues or in a ball of slime, and it's very hard to get to. And it can switch between these forms like Superman going into the phone booth. Right? All of a sudden, you know, you're treating Superman here, but it's Clark Kent, and you don't got him!

So we have different antibiotics we need. If it's intracellular, these Zithromax, Biaxin, doxycycline are going to get inside the cells. Over here, Amoxicillin, cefuroxime, the beta-lactams are going to kill the cell wall. But what do you do with these round-bodies that are hidden way deep? Well, you need something like metronidazole, plaquenil, tinidazole, cryptolepis, which is a herbal. So you need something to get in there.

A few people are taking pictures of that slide. I like that slide. Okay, so, interestingly, what we've been doing as clinicians with that triple therapy was just shown in Doctor Zhang's study that just came out last year. And he's talking in a different room here, but he found that those persisters, there were 165 different antibiotics that worked better than our traditional ones. He found daptomycin to be a really good one, but we can't just switch to daptomycin and say, "Oh, that's the new drug. That's what we're going to use!" Because daptomycin and clofazimine worked on those persister cells, but they didn't work on the growing ones, like the little spirochetes in the intracellulars.

So he found that you had to do a regimen where, for example, daptomycin to get the round-bodies, doxycycline intracellular, beta lactams to get the cell wall. So if it takes those three to kill off bacteria in a test tube, what do we need to do in a human being with all these hiding places all over the body? It makes sense. And that's what we've been doing clinically.

So this study was touched upon earlier, The New England Journal of Medicine retrievement trial from April, and I think they really missed the point with this study. It was a good study, but they missed the point. To me, the point is, both groups who had persistent Lyme disease benefitted from an extra two weeks of IV ceftriaxone. They actually got a five-point improvement on their physical scales and that was sustained for a year. So, re-treatment works, but instead, what they did is after giving people those two weeks, they split some off into placebo and some off into four months of antibiotics.

But they were using single-agent orals. They were not using the combination therapy. So, to say that, you know, longer-term treatment of Borrelia doesn't work as their conclusion, that doesn't make sense. Because they were not treating the way we clinicians do. Now I feel sorry for them, because clinically relevant research is really difficult. I think it's almost easier to be a clinician than to be a researcher for this stuff, because there's so much diversity of presentation. How do you throw people in where one group has a lot of neurological, one has a lot of joint pain, one has a lot of heart disease, and treat them all the same in a study?

We know that we have to look at all three morphologies of Lyme. We've got to get through the biofilms, the slime that's covering up these round-bodies. Co-infections-how do you standardize a research trial when there's co-infections? One person might have Lyme and Babesia, one has Lyme and Bartonella, and you're just going to give one dose of, you know, one single antibiotic regimen for everybody? You have to look at people individually. And the comorbidities are important because when you have Lyme, it affects your endocrine system, your hormones, thyroid hormone, your cortisol, everything like that, and it affects your immune system and it doesn't affect everybody in the same way. So, how do you find a single group to study?

So I think long-term combination treatment is plausible. I think from everything we've seen in the test tube makes sense, other spirochete models. I mean, latent TB we treat with six to nine months or three to four months of combinations. Active TB, four to seven months of combinations. So we know about this in other spirochete diseases. Why not with Lyme?

So when we're trying to do education here, the key thing is awareness and action. We need to promote awareness and then we need to put it into action, to actively treat people. So our educational needs are, have a higher level of suspicion. Doctors need to know that that acute-phase serology is not helpful. They need to know about clinical diagnosis, and they can't just look for the target lesion; they have to understand the clinical diagnosis.

And if there was one educational document that I would like to send to every physician in Canada, it would be this one. This is key. Cameron Johnson Maloney, "The evidence assessments and guidelines recommendations in Lyme disease. The clinical management of known tick bites, erythema migrans rashes, and persistent disease." Now, this is so good, that this is actually the only set of recommendations in the US on their guidelines clearinghouse. So that guidelines clearinghouse is where all the insurance companies look to say, "What is evidence-based medicine?" The IDSA guidelines were kicked out of the national guidelines clearinghouse. So this is the only set of recommendations on there, and this is what we doctors need to know. Why?

Because it's patient-centred. It's evidence-based medicine saying, "What research do we have?" and then, "What is our clinical expertise?" and, "What are the patients' wishes? What are the patients' values?" So that we're doing an N-of-1 trial for everyone with informed consent. And that's important because if you have a tick bite and you're told, "I've got a one percent chance of getting Lyme from this," somebody might say, "Well, I'm not taking antibiotics if it's only one percent risk." Somebody else might say, "Whoa, a one percent risk? I want antibiotics because I've seen how bad Lyme is." So without asking the patient, we doctors cannot treat in an evidence-based way. And, we have to teach about these co-infections. And I will turn this over to Alison to finish.

Alison: [00:46:51]

So we need to educate about tick bites. We need to wear our hats, our long-sleeve pants, we need to tuck our pants into our socks. We need to use DEET or some sort of an insect-repellent, so that we don't smell as good to these bugs. We need to check for ticks when we've been outside, even in our own backyards. We need to vaccinate our pets and monitor them for ticks because our pets live our beds, and whatever crawls them, crawls on us. We need to have a safety zone of no-plants around our properties because this is way the ticks can't crawl into us in our properties. We need to educate about the prevention of Lyme disease after we have been bit with a tick. This is just a beginning point of basically treating someone for approximately 20 days until they are symptom-free. We need to submit the ticks, so we find out what kind of species do we have here in Canada.

From the doctor's perspective, why don't doctors treat in Canada? Doctors are nervous of doing the right thing because they fear reprisals. This is a result in fewer doctors treating Lyme disease. Many patients have to go to the US for treatment, as you well know. Patients are driven underground to try to find doctors who will treat them in order to get them better. And why do patients go to the States? Because that's where the doctors are that have the expert information, and they get better.

So, what do we need? We need diagnosis, and management of Lyme disease is hampered by an incomplete understanding of Borrelia and its co-infections, its pathophysiology. We don't have reliable biomarkers for the acute and ongoing phases of the disease, and we have insufficient clinical trial evidence. In the future, we need to actually identify the actual pathophysiology of these organisms in co-infections. We need to have a methodology for determining which bacteria are operating in which particular patient that's sitting in front of us. We need targeted therapies, including combinations of therapeutic modalities.

The educational avenues we have available to us. We can create undergraduate curriculae, we have to teach it in the medical schools, we have to teach it to the people who are already out in practice-the post-graduates. We need to create some specialty post-graduate training in tick-borne and co-infections. We need research. We need to educate the doctors about guidelines, educate the public about prevention, support the chronically ill patients that are already ill. And we need to create medical experts. And we need to create a national Lyme network that includes researchers, clinicians, patients, to formulate the next steps quickly.

We need to prevent Lyme disease. We have to make it cost-effective. A few weeks of antibiotics is certainly a lot more cost-effective than months to years of antibiotics and other therapies. We need to promote ability versus chronicity of illness.

In Australia, they had this little logo that was actually sung by Sid the Seagull to prevent skin cancer, and it went like this, "Slip on a shirt, slop on sunscreen, slap on a hat, and stop skin cancer." They've reduced their basal-cell and their squamus-cell cancer by about 50 percent. They're still working on melanoma because it takes 20 years to prevent that.

So, I came up with this. Prevent Lyme Disease slogan. So this is what I came up with, "Cover up from your head to your feet. Spray with DEET. When ticks eat your meat. Treat. Prevent Lyme disease." Thank you.

Kathleen: [00:50:24]

That is excellent. Please join me in thanking Alison and Liz. That was awesome.

You're like natural teachers, both of you.

All right, listen. We're a bit behind schedule, but let's take a maximum 15-minute break. Okay? From whatever your watch says. I'll ask you to be back here. Fifteen minutes from what your watch says, and then we'll hear from our next two speakers. In fact, if the next two speakers are here, could you please come and see me? That would be Kieran and Christina.

Okay. Ladies and gentlemen, we will continue.

Understanding there may be a few people streaming in over the next few minutes. So, I've been asked if you can have access to the presentations. Let me just say this: I'm going to ask my colleague to confirm one way or the other and let you guys know tomorrow, okay? Just so that we're not giving you, you know, conflicting information. So I'll tell Dan, my colleague, to announce tomorrow morning to the whole gang, "Here's the scoop with the presentations," okay? Okay. So we're going to move on to now, we've got two more presenters. Kieran is with us here, and the next presenter, Christina Nelson, is joining us remotely, so, she'll be speaking to us through WebEx.

But let me just quickly introduce Kieran Moore, who's got a very long title: Associate Medical Officer of Health, Program Director of Public Health and Preventative Medicine. Also …

Kieran: That's probably good.

Kathleen: Is it? Well, let me at least just say then that he's from Queen's University.

Kieran: Okay. Thank you.

Kathleen: Over to you, Kieran.

Kieran: [00:51:57]

We're just trying to make up time. So, thank you very much for the opportunity to speak with you today. I'm honoured to be invited to this conference and to follow Liz and Alison on how we can educate physicians about this emerging infectious disease risk in our populations, so I have to thank the organizers again and again and again.

I'm different than the previous two speakers. I want to say upfront that I don't treat individual patients. My main responsibility is to take care of populations, and as such I'm going to through the strategy of how we've tried to educate physicians about the risk of this new emerging infectious disease in our population.

So, I'm going to describe why it's important in my neck of the woods, in Southeastern Ontario. I'm going to review some of the core contents of the strategy, which we use with our healthcare professionals-I hope you can hear me well at the back-and describe how we're trying to communicate more effectively with our physicians to let them know about this risk. And certainly, Liz has raised the point that we sometimes have difficulty penetrating into the clinician marketplace to have our voice heard regarding infectious disease risks, and describe how we need to be persistent and consistent in our approach to educating our physicians.

There will always be early adopters that will read up and pay attention to what you send them, but then we have to deal with laggards. Like in any profession, there's those that aren't going to read, that aren't going to pay attention to the messaging that you send, and we really have to be like a marketing firm: very persistent and consistent of how we educate our physicians.

Further, I'm a salaried employee of a local public health agency. We receive our funding from the province as well as our municipality. I receive no federal funding, I receive no honoraria, I'm not making any recommendations regarding any products. We have created an action plan on Lyme, which is based on the Public Health Agency Action Plan, and that's what I'm principally going to be talking about today.

So, why did you invite me? Well, I happen to work in Kingston, and this is a Public Health Ontario risk map. We have a high rate of Lyme disease in our area and are part of that whole Southeastern Ontario area of risk, starting from Brockville all the way down through Hastings. And this is an epidemic curve of the incident rates of reported Lyme to our local public health agency in Kingston. And just to frame it further, our local public health agency cares for around 200,000 people. That's my family practice; that's the population I'm responsible for.

And you can see in 2006, we were receiving a significant number of cases. Probably equal, slightly above the Ontario average, but progressively since 2006, in ten years, we've had a significant rise in the incidence of Lyme in our area. And we're now at approximately 30 cases per 100,000 people, which would make us equal to the rates that are occurring in endemic areas in the United States. And the key thing is, how can we communicate this effectively to all healthcare workers in our community, that we are now in an endemic area? This is not going to go away, and how can we prevent, prevent, prevent this illness in our population and effectively treat it if patients present to our emergency departments in hospitals?

So, this is the data that I use to convince family physicians, front-line healthcare workers, that they should be paying attention to Lyme, they should adhere to the messaging on treatment. And as a result of our high incidence rate in our community, we've created an action plan for the last several years, and we try to be transparent and accountable to our community of how we're trying to communicate the risk of Lyme across Southeastern Ontario.

Our goal is to mitigate the risk to area residents and visitors posed by Lyme disease through activities undertaken in collaboration with key community partners. If you don't remember public health, we collaborate, we communicate, we coordinate across the health system spectrum as well as with community agencies, and we try to do the same with Lyme disease: communicate with our schools, our universities, our colleges, our main employers about the risk, as well as with our healthcare system.

The main objectives that relate to educating healthcare workers is number three. Our goal, we stated, is "To provide education, resources, and tools to local healthcare providers so they are better equipped to recognize Lyme Disease and provide early and accurate diagnosis and treatment." And I think we've heard it again and again and again from patients: we really want to identify this disease at the earliest possible timeframe and treat it effectively so that we don't have incidents of chronic Lyme in our area. And that is the message we're trying to get out, is "Prevent it from happening in the first place, but identifying it early and treating it appropriately early."

And in terms of communicating with healthcare workers, well, we try to provide clinical guidelines or let them know about the clinical guidelines. We inform them of the epidemiology of what's going on in our region on an active, continual basis. And we try to provide that information to all of our healthcare workers within our health unit because we go out into the community, and can educate everyone in our community regarding this risk. So, get our own house together, but also work with our healthcare workers who are providing direct patient care, like Liz and Alison, about the risks.

And so, I'm just going to give you a couple of examples of the epidemiological data that we provide to our community and healthcare workers. I'm happy to say that we have a real-time surveillance system throughout Southeastern Ontario where we monitor every presentation to every emergency department in our region, and we track every visit that's related to ticks, and we present this data in a report every two weeks to our healthcare workers to let them know whether tick-season has started, whether the risk for Lyme disease, which is associated with tick-bites, obviously, is also going to be on the rise. Just to give them situational awareness that, "My goodness, yeah, tick-season is back." And we follow that through year by year and compare each year, and this is just people showing up with ticks or tick-related illness.

And we also monitor emergency department admissions to hospital, any meningitis, any encephalitis. We follow up and ensure that our neurologists, our infectious disease physicians, are considering Lyme disease as a possibility in the differential diagnosis. A huge educational effort across the health system is necessary.

And we also show them, this was passive tick-submission data. So, patients bring the ticks to our health unit and we submit them off to Public Health Ontario and the National Medical Laboratory. And you can see since 2009, actually going back further, the tick numbers have increased and the percentage of ticks with Borrelia in them has increased significantly. So this is a 20% marker here and once you're above 20% consistently you're considered in a highly endemic area. So this would be similar to the endemic areas in the United States. So, one in five of the ticks found in our region have the Borrelia in them. And that's a key message we have to get out to our physicians, front-line healthcare workers, and the community, clearly. And that has increased and will probably stay in the 20 to 30 to 40% range as in Lyme, Connecticut.

Key, real-time information. That's essential for decision-making for physicians. We also spatially map and compare what's going on in our region. So the darker the colour, the higher number of tick presentations, the higher number of cases of Lyme disease, and we compare our regions in real-time with those type of mapping tools.

Some of the key messages-and this is consistent with what Liz and Alison and what many members of the panel have been saying-is that you have to make sure your physicians and your community understand that you're now a high-risk area. And we get that message out through radio, through TV, through press, through ongoing communication, as soon as the snow's gone until the snow comes back. And that's our job, to communicate that risk to the public as well as to healthcare workers. They must understand that Lyme disease should be very high up in their differential diagnosis of any rash of any appearance that's a new onset, and any undifferentiated fever, chills, muscle aches, and arthralgias, in our region, Lyme must be in your differential diagnosis.

And some of the key lessons is just how to remove a tick. So we educate physicians following CDC guidelines on tick removal, for example, and we try to educate physicians about the life cycle of the ticks, because they are typically-as Liz and Alison have pointed out-we're not taught this in medical school. This is a new, emerging zoonosis that you've seen from our epidemic curves. Physicians aren't aware of how to identify ticks and the risks associated with them, and then an engorged tick differential from a non-engorged tick.

And our physicians are trained to look for this expanding, perfect, textbook bull's-eye, and as Liz pointed out, we have to tell them that the spectrum of rash is from a purple, increasing bruise on a lower limb, to a cellulitis-looking rash on the trunk, to an itchy, pyritic, scaly rash that's expanding anywhere else on the body. The presentations that we've seen or heard reported to us in public health have been so variable that we'd love to create just a photo album of all the rashes that presented to educate the public and the physicians, and perhaps we could do that at a national level.

I've seen rashes that have gone to dermatologists, even in our region, for biopsy because the physicians weren't considering Lyme disease. I'm embarrassed when I hear stories like that, that I haven't educated our physician community enough. But if you start thinking of: physicians are transient in our neck of the woods, we have tons of residents, learners that come from across the country, so this idea of persistent and consistent education of physicians is very important due to the migratory nature of physicians' practices.

We have to educate them about the highest timeframe and highest risk period, which is typically when the nymphs come out, and our epidemic curves correlate, of true Lyme cases reported to us in public health, do correlate well with the nymph, which is very difficult to see, very difficult to identify, and often missed. So, we try to educate physicians regarding that as well.

And as we've heard today and last night, it's a clinical diagnosis. I don't want my physicians waiting three weeks', four weeks' turnaround time for a blood test and not treating patients appropriately and early. And I can't say this enough to our physicians: "Don't wait for the tick results, which could be three months. Don't wait for the serology results. This is a clinical disease that should be treated immediately with the appropriate antibiotic regimen." And I'm a public health physician, I don't treat patients individually, so I depend on guidelines to refer patients to, but clearly, physicians can make their independent choices on what antibiotics are prescribed.

And we typically do refer them to the IDSA guidelines and in Ontario this is a guideline that is used frequently by Ontario physicians supported by the Ministry, and it has a not-a-bad chapter on acute treatment of Lyme disease and the appropriate doses for a first line, second line, and third line. So, it's a one-pager with appropriate references and we try to ensure that all physicians have access to these types of documents, which are free. At least they are informed of appropriate treatment guidelines.

And we try to get across that false-negative test results may occur when testing for Lyme disease, especially if the patient's treated early, and our goal is early treatment. So, don't depend on the test for confirmation of your diagnosis. Be confident if you're in an endemic area like ours, that you should just treat and not worry about the diagnostic testing.

I'm not a laboratory expert, I'm not a member of AMMI, so we typically refer our patients to Public Health Ontario labs for expert opinion regarding interpretation of more complex testing. Because you can get, as we've seen with, EIAs and ELISAs and Western blots, uh, difficulty interpreting and putting them in clinical context, so I refer them to medical microbiologists in our region.

Excellent information from Liz and Alison again on integrated tick-management. We try to educate our physicians so that they can educate the public regarding the public regarding how to safety-proof your backyard, your cottage, the environment that you're working in, and simple instructions that we have in pamphlets in every physician's office that they can distribute to their patients.

We also have pictures on safety-proofing. This is from a CDC guideline. We know the ticks don't like the sun and they don't like to be dried out, and this is one prevention strategy that we try to use in our community, both with healthcare workers and the community in general. So, pictures on the right is what we want. We don't want high grassy, a non-sun-exposed area, to protect our children. We also have an algorithm on prophylaxis which is based-again, I'm not the guideline expert, but based on the Sanford guideline that is sometimes used by our physicians in our area for tick bites.

So, in terms of how to educate our physicians, we try-as I said-to be consistent and persistent. We use electronic messaging. We have over 400 healthcare workers. We've got around 600 full-time healthcare workers in our region. Four hundred have signed up for our newsletter, and we send Lyme updates particularly as soon as the snow's gone, so March and April, and we re-send them out in June and July, which is the peak of the epidemic in our region, and then follow through with a newsletter in November regarding Lyme disease risk. We just try to update them to ensure that we have the right dose penetration into the medical market.

And we provide simple, one-page sheets on our review of the best evidence, and we try to update this regularly for our physicians because, as Liz will point out, busy family docs have got a lot on their plate and we have to make it simple for them to adopt improved knowledge regarding Lyme disease. We try to ensure that they know that this is a reportable disease so that we can count and track and follow up on any clinically diagnosed Lyme cases, and this is very important for epidemiology and for our understanding of how well we're preventing further cases in our region.

We also provide a vector report to all of our infectious disease, emerge colleagues, about how many ticks we found this month, whether we've had cases of Babesiosis or Anaplasmosis or detected Anaplasmosis, Babesiosis in any of the ticks. And last year, we were able to inform them that we sadly had a case of Powassan encephalitis in our region, and that patient actually died from that tick-borne encephalitis.

So we try to keep our physicians up-to-date and ensure that they're aware of what's circulating. Whatever we get, we share back with the community and with our physicians in as close to real-time as we can. I also attend emerge rounds, family-medicine rounds, and present to them, to try to keep them appraised of the epidemiology. We also attend any healthcare-worker conferences and usually have a booth set up about public health programs. Our infectious disease colleagues, both pediatric and adult, typically present updates on Lyme disease at each conference that they put on on an annual basis. Again, I mentioned the Healthy Directions Newsletter, our bi-weekly surveillance reports, and we also use our professional association to get messaging out to our physicians because they have good penetration of the medical market as well.

And so, we've tried to provide basic education on ticks, the associated diseases with ticks, educational material to help them treat Lyme cases, and again, we're available for consultation if they're not aware of what's circulating in our community, and we'll refer them to Public Health Ontario medical microbiologists as needed.

We use best-evidence for us, which would be Public Health Ontario, which is our scientific advisors to local public health agencies. They've got a decent website on Lyme disease, and they link to the public health agencies, CDC, IDSA, Tick Management Handbook, which we're going to be hearing about shortly, and Tick Identification Guide from the CDC. And we try to maintain our own website, but nothing can beat, you know, large organizations that have much more scientific power than a small, local public health agency.

And this study of knowledge, attitude, and beliefs of family docs was done in May of 2012, which Liz, identified. Clearly, we haven't done this in Ontario. I think Quebec has done a survey of knowledge, attitude, and beliefs of primary-care providers. We should be doing this every year. We have to; I have to be assured that my physicians know about this disease, that I'm educating them appropriately, that they can identify the rash, that they know the local epidemiology, and I think both doing surveys of the public and their knowledge, attitude, beliefs, and behaviour changes regarding Lyme disease in our region would be important, but also our healthcare workers. So, I applaud Bonnie for having done this work, but we have to follow it up with ongoing education of physicians.

So, oh, geez, I went a little long. 18, not bad. So, I've described why perhaps I was invited. I'm from a high-incidence area in Southeastern Ontario. I've described some of the strategies that we've been trying to communicate with our healthcare providers and how we do it on a regular basis. Can we be better? Yes, we can. We have to evaluate how effective we are and how persistent and consistent we have to be improve the knowledge base of all physicians across Ontario, but specifically, I'd love it in our area. So, thank you very much.

Kathleen: [01:10:55]

Thank you very much, Kieran. Merci beaucoup. All right. So, let me introduce the next speaker while we transition and put her slides up, who is, as I said, is not here, but is going to speak to us via WebEx. So, our next and final speaker for this afternoon is Christina Nelson. She's Medical Epidemiologist, Division of Vector-borne Diseases at the Centers for Disease Control and Prevention. So, let me see Christina. Do we have you online? Can you hear me?

Christina: Can you hear me?

Kathleen: Oh. That was very-yes. Try that again. Christina?

Christina: Yes. Can you hear me?

Kathleen: Ah, now we can hear you.

Christina: Great.

Kathleen: So, Christina, we're ready to go. Or, we're not. Just hang on one minute. We have your presentation in front of us, Christina.

Christina: Okay, great.

Kathleen: Tick-Borne Disease Educational Materials and Methods.

Christina: Great. And if I understand correctly, it sounds like the advancing the slides, for me, is not currently working, so I'll just tell you guys when we need to advance to the next slide. Is that correct?

Kathleen: Perfect.

Christina: Okay.

Kathleen: That will work. Let me just ask Stephane if we're ready to go. Not quite yet. Just hang on a second, Christina. And Christina, I will ask you to keep it to the 20-minute planned time because we want to give the group time to ask questions, but then also to identify key messages from this afternoon that we want to share with the rest of the group tomorrow.

Christina: Sure. Will do.

Kathleen: Okay. Thank you. So hang on to …

Christina: [01:12:43]

All right. Well, hello everyone. Thank you to everyone for being there and thank you also for the opportunity to be a part of this meeting. I wish I could be there in person, but hopefully we can still have a valuable exchange of information, even from afar. So today, I will be talking about strategies and materials that we at CDC use to educate others about tick-borne diseases. Next slide, please.

For disclosures, I have nothing to disclose related to this presentation or any other commercial interest. Next slide, please.

So, the objective of this talk, first I will discuss how we determine information needs related to tick-borne diseases. I'll review some CDC materials offered for clinicians and public health practitioners. Next I'll review CDC materials that are offered the public. And lastly, I'll introduce Lyme Corps, which is a train-the-trainer program for tick-borne disease prevention and education. Next slide, please.

So, how do we determine what information will be the most useful for clinicians? Next slide.

To do this, we specifically ask three questions. First, "What do they already know?" So in order to find out what they already know, we use surveys and interviews.

Kathleen: Hang on, Christina. I think we're one slide ahead of you, Christina. Hang on. Let's just go back. We're looking at DocStyles. I don't think that's what you want. Determining Clinician Needs and Three Questions. Right, Christina?

Christina: Right.

Kathleen: Okay.

Christina: Right. So first of all, to find out what they already know, we use DocStyles surveys and qualitative interviews, which I'll talk about in the next slide. What do they want to know? Again, we use qualitative interviews. We look at Internet hits, so what are they searching for and viewing on the CDC website? What specifically do they have questions about? And also, we get inquiries to CDC from clinicians, and so that allows us to talk to clinicians about what they're seeing, what questions they have, and suggestions for information. And lastly, how do they want to get information? We want to know how they prefer to get the information so we can best provide that. So again, we use online methods, looking at Internet hits and what they're using, webinars and meetings, to get that information as well. So, next slide, please.

For the DocStyles survey, in terms of surveys, the DocStyles survey is a national healthcare provider survey that covers approximately 2,000 clinicians throughout the US each year, and it provides regional estimates. We don't get state-specific information about the responses, but we do get regional information, and we get other information like provider type and practice characteristics. And it's used by many CDC programs and other research institutions, and we submitted questions related to Lyme disease in 2009 and also 2011 up through 2015, so that is a good source of information for us. Next slide, please.

Here is an example of the type of data that DocStyles can provide. So this is a chart we asked providers, basically, "Where do you usually get your information related to tick-borne diseases?" and respondents could choose more than one answer. So, the percentages add up to more than 100%, but we found that nearly two-thirds of respondents-these are, again, clinicians; this is both physicians, nurse practitioners, and physicians' assistants-found information at the CDC website. So, they do tend to go there quite a lot for information. They also use other websites, published materials, meetings, and published guidelines as well. Next slide, please.

Next, related to information and interviews. Going on the road, basically. So, we exhibit at high-impact medical conferences to distribute materials and meet front-line providers. Here's just a list of some examples of meetings that we've gone to, and we can really get a sense of what's on their minds, what are frequently asked questions and, again, suggestions for materials that they would find helpful and have been asking for. Here's just a picture of one of my colleagues here at one of those meetings. We focus on educating clinicians about prevention, of course, of tick-borne diseases, so primary prevention and also early recognition of infection when it does occur, so secondary to prevention, to prevent later sequelae of untreated infection.

But other things do come up. There is one misconception recently, and that was actually mentioned in a previous presentation today, about the reason that the ILADS guidelines are the only ones on the AHRQ website. So, AHRQ is the Agency for Healthcare Research and Quality, and they do post guidelines on their website, but they actually have a policy that they only post guidelines that have been revised within the past five years. So the reason that the IDSA guidelines were removed from that clearinghouse website, the AHRQ website, is simply because the guidelines have not been revised in the past five years. It's not a judgement call about one guideline being better than another, it is simply because they are following that rule of guidelines needing to be revised and published within the past five years. So, that's one misconception that's out there that we try to clarify and I hope people understand the reason for what they're seeing there. Next slide, please.

So, the next steps, after gathering this information, we need to put it to use. Next slide.

So, I'll review some of the resources we have for clinicians and public health practitioners. Next slide.

So, if you go to our website, cdc.gov/lyme, and click on Healthcare Providers, which you see there within the red circle. Next slide.

We have various, uh, educational materials, so in response to questions about serology, we developed this flowchart. As you know, it's a two-step process. So, the first step that should be done is typically the EIA, the enzyme immunoassay, that if positive or equivocal should be followed by the Western blot. So we developed this algorithm to help explain the process and it's available on the CDC website for download. It is not recommended to go straight to the Western blot. The two-step process was developed because it's the best balance of sensitivity and specificity.

We do not recommend using individual bands or going straight to the Western blot: that can lead to false-positives. It's important to remember that just because something is a positive test or gives a lot of positive results, doesn't necessarily mean it's a good test. It needs to be an accurate test, it needs to be clinically validated, and it needs to have good specificity. So the reason that we recommend this two-step process, again, it's the best balance of sensitivity and specificity and helps avoid false-positives that can come up by going straight to the Western blot or interpreting individually positive bands and not using the criteria of at least two out of three bands for IgM and at least five out of ten bands for IgG. Next slide, please.

We also have this Tick-Borne Disease Reference Manual, which Dr. Moore mentioned. It's a quick reference guide. It was originally developed by Massachusetts, so I have to give them a shout-out for that. It's been very popular. It was very popular with them, and so we worked with them to expand it and make it for the entire US. The size, it's a glossy booklet, basically. It's very handy. It's about six inches by nine inches, so it can easily fit in a bag or someone's office, and you can get PDF. The PDF online you can download. Again, cdc.gov/lyme. It's right there on our home page if you scroll down a little bit.

People can also order hard copies at the website below. For Canada, we do have some restrictions on shipping internationally, and it has been so popular that we are currently out of stock. But if you want hard copies when they are back in stock, on my last slide I'll give you the information for someone to contact, if you want to order some of those. But it includes tick identification, maps of where diseases occur, symptoms, laboratory diagnostics, treatment, references and, of course, tips on prevention of tick-borne diseases. Next slide, please.

So, a little bit more about this manual, a little peek into the inside. So, we have pictures of nine different ticks, the most common disease-causing ticks in the United States, and it includes information on their geographic distribution and the pathogens that they may carry. In a more recent edition, we added a picture of an engorged tick. Based on some research we had done, actually, we found that providers actually had some difficulty identifying engorged ticks, and actually thought that maybe it wasn't a tick or it was a trick question. And so, we thought it was important to put that picture there so we can help providers and others understand what they look like and, of course, since that's the most likely to have transmitted disease. And then at the bottom, you see the different tabs with many different diseases included. So we have Anaplasmosis, Babesiosis, Ehrlichiosis, Lyme disease of course, Rocky Mountain spotted fever, tularemia, and a whole section with a chart for other, less common, but also very important tick-borne diseases. Next slide.

In more recent editions, we also added a special section highlighting atypical erythema migrans. So I know that's come up a lot in the previous presentations and it's very important to recognize that these are also erythema migrans. It can be confusing to providers and difficult to recognize. And at the bottom, we also added a picture of an allergic reaction, which also can be confusing. Their allergic reaction comes up usually within the first 24 hours. It's itchy and it's small.
Some people may have questions about whether that's an erythema migrans rash or what is it, and so kind of helping people understand what differentiates an allergic reaction form erythema migrans. Again, it's been very popular. We've had great feedback, and I'm told that some providers here in Canada also use it, so that's great. Next slide.

Lastly I wanted to mention it's now available as an app to download. So, if you go to our website, again, you can download it for various types of devices, which can be helpful, especially if the print copy is not available, and you can take it with you wherever you go. Next slide.

We also have on our website short videos to explain various concepts related to tick-borne diseases. We've worked with Medscape to produce some expert commentary videos. They're usually about five minutes in length. We did a video on the two-tier testing algorithm, and in the first three weeks it had 27,000 views. We also did a video about PCR testing and other various videos, so these have been well received as well. Next slide.

And finally, for clinicians, we do various webinars. One venue is COCA Call, that's Clinician Outreach Communication Activity, and these also offer CME credit. So I've listed a couple we've done in the past, and then we actually have one upcoming next week, on May 24th, and CME credit will be available. It will be an update for tick-borne diseases, so we'll include Borrelia miyamotoi and Borrelia mayonii. Next slide.

Next I'd like to discuss some examples of educational resources for the public. Next slide.

Again, if you go to cdc.gov/lyme, first of all, you'll see we kind of have a rotating slide in the upper-right corner, and one of those that you can see here is a comic for kids about preventing tick-borne diseases. It's very simple and colourful and short and it talks about a camper who doesn't want to use repellent but then eventually does, so we hope that's helpful for kids and for parents. Next slide.

And then as you click on the Educational Materials, you'll see our communications tool kit. So we have brochures to order, fact sheets that can be printed out; they're just one-page PDF fact sheets. We have a lot of prevention fact sheets that have been tailored for specific populations like outdoor workers, hikers, pregnant women, parents. We also have them in other languages, in Portuguese and Spanish. We have radio PSAs that can be downloaded and used for various audio programs. The trail sign you'll see here in the upper-right corner, the red and black "Prevent Lyme Disease," it's kind of made out of a thick foam, weather-proof material, and it's been great for posting at areas near trailheads and other places where people would be exposed to help remind them to do tick checks and other things to prevent tick-borne disease. And then lastly, the prevention for kids. The crossword puzzle I mentioned. And then the prevention bookmarks, which of course are for both adults and kids, that have our main, our primary prevention messages on the front and then information on how to remove a tick on the back. Next slide.

So just taking a brief looking at the amount of interest in materials that are used, our website in 2015 had 7.5 million views, at that cdc.gov/lyme. And the most popular publication-so the Lyme disease bookmark, as I said, it's been very popular. In 2015, it was the ninth-most popular CDC publication of all the CDC publications. There were 136,000 ordered online, so we were very happy about that. We are also constantly revising and updating our contacts, so check back and sign up for updates. I'll show you how to do that as well on the last slide. Next slide, please.

And finally, I wanted to briefly mentioned Lyme Corps. Next slide.

Just a little bit of background first. So as we all know, education about Lyme disease is essential, especially prevention messages to prevent the disease in the first place, and also to highlight available resources. We have a lot of resources available, as you saw. I know there's other resources provided by other groups as well, but many people just aren't aware that they're available and that they can be printed and shipped for free or downloaded and printed. And so, we really want to get the message out that the resources are there as well.

But the problem is just a lack of manpower. So, we only have about half a dozen people in our group, here in Vector-borne Diseases Epidemiology Group, and we have other responsibilities such as research and surveillance. So, we really developed this program in order to help improve our outreach and basically multiply our efforts. So the objective of Lyme Corps is to develop and train a talented, committed team of students and residents who provide Lyme disease education and outreach to both healthcare providers and the public, and the focus is on prevention and early recognition and treatment of tick-borne diseases. Next slide, please.

So, Lyme Corps participants basically serve as educated foot soldiers to help spread prevention messages. So some activities that we collaborate with universities and state and local health departments, the Lyme Corps participants post prevention signs, they write prevention articles and other things, and it's really been fun because we're able to harness participants' existing talents and interests and connections to help spread those messages. So as you can see in the first example here, we had a participant who was a former botanist and she was really into gardening and so she was able to write a news article for the Virginia Master Gardeners Newsletter which gets out to thousands and thousands of people. So, that's just one example of how we were able to reach out to people.

And then additionally, manpower for occasional prevention research projects. I'm really excited about this, so I wanted to mention it. It was just published in Ticks and Tick-borne Diseases, and we had help from two Lyme Corps participants to conduct this research. So, basically a little bit of background, the CDC had recommended that you tumble-dry clothes in a dryer for one hour to kill any ticks that may be on the clothes, but this was actually based on the one published study that was done that was really looking at washing conditions and then they put all of the clothes in the dryer for an hour, and found out that, yes, all the ticks were killed after an hour of drying. But they didn't try different drying times, and we had some anecdotal evidence that maybe if you put dry clothes in the dryer, it's actually much shorter.

We couldn't do this study. I'm based out of Colorado in Fort Collins, and we couldn't do this study here because the climate's very dry and it's very different and wouldn't replicate what people in the northeast and other areas with, um, lots of black-legged ticks would be seeing. So the Lyme Corps participants were able to help us with this research project, and we found that if you put clothes directly in the dryer after coming indoors on high heat, it only takes six minutes to kill all the black-legged ticks on the clothing. So we're really excited about this. Like I said, in addition to helping people, helping kill the ticks, it helps people remember to get their clothes off. So when people are outdoors gardening or hiking or whatever, soon after they come indoors, take your clothes off, put them in a dryer for six minutes on high heat, and you can kill all the black-legged ticks. This does not, however, apply-we only tested blacklegged ticks, so it's important to remember that other, more hardy ticks, such as lone stars, it may take more time to kill. If the clothing is wet, if your clothing is soiled and you need to wash it first, then it will take about 40 minutes drying on high heat. So, the previous recommendation does stand for wet clothes. Next slide, please.

So, thank you very much. I wanted to acknowledge the Public Health Agency of Canada and also the Lyme Disease Conference Planning Committee. I know they put a lot of hard work into planning this meeting, and we all really appreciate it.

Thank you very much, and if you could go to the next slide, I'll leave you all with some information about how to contact us. Anna Perea is our technical communications expert, and you can contact her about ordering materials or if you have questions, and you can also sign up on our website for updates. When we update our materials or websites, you can get notices about that. So, I think I was 19 minutes, so hopefully I shaved off a minute. So thank you again, and I'm happy to take any questions.

Kathleen: [01:31:30]

Okay. Thank you, Christina.

Kathleen: People are clapping for you right now. You may not hear it.

Christina: Okay. Thank you.

Kathleen: Okay. All right. So, there's two things we need to do before 4:30. One is a Q&A. So, any questions of clarification, things you want to know from the speakers, and maybe I'll ask Alison to come join us at the front. And Christina, thank you for staying with us a bit longer with us so we can ask you questions.

Christina: Sure.

Kathleen: And then the second part of the discussion is basically a discussion that we would have together on what are some of the key messages that we want to convey back, that we consider important to the rest of the group, tomorrow, as it relates to education and awareness. All right? So, we'll take some time to do that as well before we let you go at 4:30.

But let's go to your questions, and I think we'll start. I'll take two questions in the room and then we'll go to those folks joining us virtually. Go ahead.

Female: [01:32:15]

What are we doing to teach the children at school, in Canada? Can they recognize a tick? Do they know what a tick does? Do they know how to remove a tick? I know, I work in a high school; my students know nothing.

Kathleen: Okay. So what can be done to educate kids at school? Let me just first of all give the floor-any thoughts from-and is the other mic … Okay.

Kieran: Should I use a mic?

Kathleen: Yeah, let me just give you the mic and we'll leave this mic at the table. Okay. Any thoughts on that question? How best to educate kids in school?

Kieran: So, great, great point.

Kathleen: Maybe we just need to increase the volume of that microphone please. Okay.

Kieran: [01:33:02]

If KFLA Public Health, if you go to KFLAPublicHealth.ca, you can go to our action plan. We do have pamphlets that we use at the schools, educational pamphlets for school boards as well as for all the camps, that we have to inspect camps, summer camps, throughout our region prior to them starting up. We go and talk about safe water, accidents and injuries, and we always, for the last five years, give a talk to all camps on Lyme disease: early detection, prevention strategies. And with the school boards, we send out this type of information as well. So we can do more, but for the camps especially, where kids are out in the wilderness in our region, they get direct education, and the counsellors, and the supervisors, and the nurses we bring in to educate them as well.

Female: (Indiscernible).

Kathleen: Okay. Okay. So hang on. And I'm going to try to make sure that as many people get an opportunity to ask a question. Did you want to …?

Kieran: And I want to let you know that's not consistent. I don't know if that's consistent across health units in Ontario.

Female: [01:33:59]

It's-no. That's my next question. You know, you are in an endemic area. I happened to pick up Lyme disease in a non-endemic area and I know that my grandchildren, our students in our school, we did a mental health awareness month for May, but we didn't do anything for tick-borne illness. This needs to be a Canada-wide project, not just because the area is endemic.

Kathleen: So, that might be one of the key messages we want to share.

Female: What's the name (inaudible), please?

Kieran: So, K …

Female: The name of?

Female: (Inaudible).

Kieran: Oh it's uh, KFLA Public Health Action Plan on Lyme Disease? So in the back …

Female: (Indiscernible)-say that slowly, please?

Kieran: [01:34:31]

K, sorry. Kingston, Frontenac, Lennox and Addington. KFLAPublicHealth.ca. And in our action plan we have some of the educational materials. And we try to be as accountable and transparent of how we're tackling this issue, and not to say we're the best at it, but if you want to bring this to your health agency and say, "What are you doing?" and, "Do you have an action plan?" I mean, that's one way of getting change across the province, if not the country.

Female: Okay.

Female: (Indiscernible)

Female: And that could be one of the messages we agree to. So again, let me take just one more question here and then I want to go-I want to make sure the folks online have a chance as well, and we'll come back here.

Marie: [01:35:20]

Hi. This is a question for Dr. Moore. I'm Dr. Marie Matheson. I practice here in Ottawa. My question is about the testing kits or the testing methods you're using to test ticks. As we know, the testing methods here in Canada for testing humans is flawed, so how do we know the testing that you're using for ticks is actually accurate, and maybe that more ticks are carrying infections than the one in five or the one in six that you're mentioning.

Kieran: [01:35:45]

I'm not the right person for that, to be honest.

Marie: Well you mentioned-you said …

Kieran: I don't do the testing, so …

Marie: Oh …

Kieran: Is there anyone here from the lab system?

Marie: But you mentioned yourself in your slides that one in six …

Kieran: Oh yeah(?), I got the information from National Medical Lab and from Public Health Ontario, but I personally I am not a lab expert …

Marie: Okay …

Kieran: So I don't want to comment on …

Marie: So I guess my point is the research may be not accurate in terms of how many ticks are infected, and so it's giving this false feeling amongst Canadians that, "That's okay. You know, not all ticks have the infections. You don't have to worry about it." This is really a key point that I hear often times in my practice.

Kieran: Yeah.

Kathleen: And that might be another-again, good key messages to share tomorrow in terms of things we consider important, so …

Kieran: Along that line, I think we …

Kathleen: Yes.

Kieran: We can all, as public health units, be much more transparent and accountable to the public. Like, we try to prevent-or provide our epidemiologic data to be available on our website. You know, how many ticks are positive? Uh, the National Medical Lab that does the testing could also tell us, transparently and accountably, how they test the ticks. And I just don't have the expertise to comment on what piece you're (inaudible).

Kathleen: [01:36:50]

Right. Right. Okay. Fair enough. Let me just see if the folks joining us virtually have a question. I'm going to ask the operator. Do you have a question? Let's maybe start with the English channel, because I know that we have both channels …

On va commencer avec le poste en Anglais, ensuite, on ira au poste en français.

Operator, are there-did you have any questions in queue for us?

Operator: Thank you. Please press *1 at this time if you have a question on the phone line.

Kathleen: Is there a question-for those of you …

Operator: Once again, please press *1 at this time if you have a question. There are no questions registered at this time.

Kathleen: Okay, so let's continue in the room and then we'll come back to you, those of you joining us remotely.

Cecile: [01:37:34]

Hi. I'm a nurse and an advocate and educator, and I have Lyme disease. My name's Cecile Gough and I have a question for Dr. Zubek and Dr. Bested about the testing that you talked about. It was a great presentation, by the way. Because I get people asking me all the time, and I was an oncology nurse-that's really the only medicine I know. So in terms of Lyme, doctors I find aren't coming up with what tests to order, in my experience here in Ontario. So, I get people asking me all the time, "What tests should we order?" Like, I asked my doctor specifically for the Bartonella test with public health, which came back highly suspicious but infectious disease said it was false-positive-of course. So what tests would you recommend? Because you spoke to that briefly and I'm wondering about the PCRs for Mycoplasma and Anaplasmosis.

Liz: [01:38:27]

Now I believe I'm not supposed to mention any specific, private labs or anything by name, so I want to abide by that, although if you do look on my website, or if you Google my name, you can find all that information about labs I use. I generally use a-from the accredited Canadian lab in Ontario. What I generally do is what they call a Chronic Fatigue Syndrome Profile, which has C. pneumoniae, Mycoplasma, HHV-6 on it, a few other things. I take out the cytomegalovirus and I insert in Bartonella, and they do a DNA PCR test on that for both blood and urine. And …

Female: (Indiscernible) slowly?

Kathleen: Repeat that more slowly …

Liz: It's on my website.

Female: It's on your website.

Liz: All of that is on my website.

Kathleen: And your website is?

Kathleen: So your address? Your website address?

Liz: LizZubek.com. L-i-z-z-u-b-e-k-dot-com.

Kathleen: Okay. Let's get as many questions as we can.

Male: [01:39:30]

Well, I have a quick comment, really quick, about the tick testing. I just looked at the KFLA website and it was saying how it's one in five ticks, so that's even scary enough, I think, that data, even if the testing isn't positive. Like, that's still scary enough. But, so my question is-I think it's for Christine. Is that her name?

Kathleen: Christina?

Male: Is she still-Christina?

Christina: Yes, I'm here.

Male: Oh. Okay. So I was just curious-she's based out of the US, right? Her information is mostly from the US? Okay. Is it mostly from the US, the data you gave us?

Christina: [01:40:03]

Yeah. So, the provider surveys, those are all US providers, so that chart that I was showing you was a …

Male: [01:40:10]

Okay, so my question is, how do you reach the general public? Because I saw a few little things, but even like commercial TV-wise, how much are people warned? Because it seemed like a lot of your data was the people had to find it. You know what I mean? And for me, before I had Lyme disease, I wouldn't have known to look for that information at all. So, it's like how-what strategies are being used to reach out to the people before so that they know about it before they have to go and look for it?

Christina: [01:40:43]

Yeah, that's a great question. You know, that's always the challenge, that we're trying to reach as many people as possible and get that information out there. So yeah, you know, the first step is developing the materials, and I showed some examples of those. And yes, you're correct, the next step is making sure people know about the materials. So you know, the Lyme Corps program that I mentioned, helping get the messages out there through writing newsletters and posting prevention signs and stuff like that, hopefully helps reach more members of the public. And we also work with state and local health departments, so they are, you know, within each state, and they have a very good handle on what are the populations that they can reach. Who are the people that need the information? And so, we try to support their educational efforts that way.

Kathleen: [01:41:31]

Okay. Thank you, Christina. We'll take another question in the room and then I'll check afterwards if there's any virtual folks asking questions. Go ahead.

Asja: [01:41:38]

Thank you. So, my name's Asja Wright and I'm here on behalf of MP Dan Ruimy's office in Pitt Meadows, Maple Ridge, BC. So, my question's kind of on a local level. In our ridings, what can politicians do, and how can we be part of the movement of awareness and prevention? And I just am looking for some suggestions for our office.

Liz: [01:41:59]

Since I'm in your riding …

I'll answer this one. One of the things that we need is protection, and you heard that in the other session, because as a doctor, I am sticking my neck out every time I do these N-of-1 trials. I was shaking in my boots when I treated that little four-year-old Donny, but where else was I going to send him with that history? So, protection for doctors who are following guidelines, where they're evidence-based guidelines but the research just isn't there to clearly state how long and with what you should treat and when to stop, that we won't have our licenses on the line, or our hospital privileges or anything threatened because we're not following strict IDSA guidelines.

Kathleen: [01:42:44]

Okay. So, let me just see if there's anyone online. Operator, can you tell us if you've got anyone in the queue?

Operator: Certainly, thank you. We do have a question from the French portion, from Rachel Guignard. Your line is now open. Please proceed.

Kathleen: Okay. Go ahead.

Rachel: Yes, hello. Can you hear me?

Kathleen: Yes, we hear you.

Rachel: [01:43:06]

D'accord. Donc mon nom est Rachel Guignard. Je suis infirmière et aussi j'ai la maladie de Lyme, Babésiose et Bartonella. J'ai une question parce que dans le CDC et aussi au Canada, au niveau (inaudible) - j'ai de la difficulté avec ce nom-là, ce mot-là, bon, moi ce que je voudrais savoir : est-ce qu'ils comptent les cas cliniques ou seulement les cas constatés, diagnostiqués par les laboratoires, que ce soit autant aux États-Unis et au Canada?

Kathleen: Repeat the question.

Rachel: La question est de savoir, les cas qui sont répertoriés donc au Canada depuis 2009, les cas positifs de Lyme doivent être déclarés. C'est déclaration obligatoire à la Santé publique. Ce que je veux savoir, en fait, est-ce que ce sont des tests de laboratoire où ils sont obligatoirement tenus d'être positifs pour faire la déclaration ou les médecins qui ont fait un diagnostic clinique sont pris en compte dans le chiffre total?

Kathleen: [01:44:16]

Okay, so not being an expert here in Lyme disease, I'm going to try to translate this question. So I believe that what she wants to know-and I don't know if you heard the question. Did you hear the question?

Alison: Yeah, I heard the question.

Kathleen: Then, Christina, maybe you're better …

Alison: [01:44:32]

Yeah, the question was, "When you're reporting Lyme disease, is it being reported as a clinical diagnosis, or is it being reported as a laboratory diagnosis? Do you have to have, in other words, laboratory tests in order for it to be a reportable disease?"

Kathleen: Okay, and the answer is-does anyone know what …

Liz: I can answer in French.

Kathleen: You can answer in French. Brilliant. Okay.

Liz: [01:44:54]

The tests - Okay. In British Columbia, it is almost necessary to have the laboratory because the form used is - it is very specific what the symptom is but when was the laboratory test.

So, in English, in British Columbia, we have to say exactly when we did the test and what are the clinical symptoms, but when was the test done to confirm it?

But with KFLA it's a much better form. KFLA is a much better form.

Kathleen: Oh-that asks for more information?

Liz: Because it says in KFLA it is a diagnosis - clinically diagnosed.

Kathleen: Ah, okay.

Liz: Was it diagnosed clinically? In KFLA.

Kathleen: In the KFLA form, it indicates that, but not in all the forms across the country, if I understand correctly.

Liz: Yes.

Kathleen: Ok. Very good.

Rachel : [01:45:56]

So the forms in Canada are not uniform.

Liz: Oh, you haven't changed the forms?

Kathleen: One moment miss. There is a correction to make.

Liz: I've tried to …

Female: Yeah. We'll hand you the mic.

Liz: [01:46:10]

I've tried to fill out the forms in BC, and it was extremely confusing when we were doing it because I would tick off they had the erythema migrans, and they had the symptoms and everything, and I got down to the bottom, and it said, "When was this diagnosis made?" So, I found as a clinician it was hard to use.

Female: (Inaudible)

Liz: That also.

Kathleen: [01:46:37]

Okay. So the lady that asked the question, there seems to be a little bit of confusion. I am not sure if we have a clear answer for you.

Rachel: So if I - if I can summarize, then, what we have as statistical data is not very reliable.

Kathleen: That's what I understand.

So she's saying, "So, therefore, maybe we can't 100% rely on the stats that we have."

And I think that the majority of people seem to say yes.


Kieran: [01:47:06]

Oh, I think it's clear that there's under-reporting.

Kathleen: Okay.

Kieran: And we have to do better at communicating with our physicians that, if we're going to have reasonable data for our regions, that they must report. It's too important to miss.

Kathleen: Okay.

Kieran: It's one form. If we have to pay them 20 bucks to fill it out, I mean, let's do it.

Kathleen: Yeah!

Kieran: But we need better data, and clinical data if we're going to make effective decisions.

Rachel: Yes, Yes.

Kathleen: Okay. And Ms., we'll move on to other people. I have a lot of questions. Would you like to finish quickly?

Rachel: [01:47:36]

Yes. I just wanted to make sure I got it right. So what I understand is that it is not standardized across Canada.

Kathleen: Yes, you are right.

Rachel: Then it's not really mandatory but in fact it should be done because there - the statistics show that there are 30 cases per year since 2009 but it's not really the reality there; We cannot rely on that, we can't base it on that. But when we go see the doctors, that's what they tell us.

Kathleen: I …Yes.

Rachel: They are formally required to follow this because it is evidence they are telling us. So it's not true.

Kathleen: Yes. But, yes. You are right. Miss. I have a lot of other questions. Miss. Please, we have to pass to others that have more questions. Thank you.

Rachel: Thank you very much.

Kathleen: Thank you. So let me just get to some folks in the room and I'll come back again to the virtual folks. Sir?

Aftim: [01:48:26]

Thank you. Hi there. My name's Aftim Nassar. I'm from Brockville. I'm one of your 2014 statistics that was positive. I'm here representing not only myself but my two children who are not Lyme-positive, and I want to keep it that way. I'm hoping that I'm articulate enough to bring this from one point to another. First off, I'm 43, and I understand the bonuses of pamphlets and handouts because I hate computers. However, as my young friend over here amply demonstrated, we're dinosaurs. There's got to be a better, more modern approach to delivering the information to educating not only ourselves, but everybody else.

And I'll give you a prime example of that: MADD. They took the current method of communication at the time, being radio ads, then TV ads, and bombarded us, and just were relentless about it. Now, drinking and driving is a social faux pas. It's not a, "How many can I drink before I drive?" and, "Let's see if we can get around the cops." It is now a big no-no. That kind of ad campaign is something that we're woefully lacking here as far as Lyme disease goes. So, I'm trying to say adapt with the times and let's change it up. Maybe get some kind of consulting organization to help us out here because I'm not the guy to do it.

But now to my question. We try to educate everybody as to what's going on. Yeah, fine I've heard a few things about Lyme disease for May. I mean, everybody in this room knows, probably by Facebook or friend, that May is Lyme Disease Awareness Month, but nobody really understands it, what it is you're that trying to deliver, other than, "Oh, there's some ticks." Nobody understands what it is you're trying to do, such as, "We're trying to educate the doctors." That's great. We've talked about educating the children. That's great.

But let's talk about educating pet-owners, animal people, that deal with the animals. For example, and this is where I'm struggling to get it through, rabies vaccinations. There's a program, a national program, where they drop biscuits from the sky. I know, because I helped out with it one year. Hated flying around in that plane, but that's how they delivered the vaccine. That's how we reduced the issues of rabies, nationwide.

Is there anything where we can do that for the ticks, for Lyme disease? I would suggest that there is, not only putting it in those biscuits for the raccoons and everybody else because ticks bite anything. Doesn't matter: raccoon, deer, people; heck, if they could get a fish, I'm sure they would. But if we could vaccinate the animals, that would help with the prevention because everything is a three-pronged approach, right? Prevention, basically that means go get the ticks and kill them; education, which is what we're talking about here with the doctors, and I'm suggesting we need to change it up for the kids; and treatment, for all of us long-term sufferers.

So, would anybody here in the panel be able to address for me the issue of killing ticks? Is there anything that we could do such as-and I'm offering the example-as the rabies vaccination, which clearly works? The infrastructure's there. You can literally piggyback it.

Kathleen: In a mass …

Aftim: In a mass, like, it took several years to do, it's still underway, but it has worked. Can we piggyback that? Is there anything like that?

Kieran: [01:52:22]

I like the way you think.

And you're basically saying "Prevention, prevention, prevention: can we do better?"

Christina: I can let the Canadian speak first, but I can add something as well.

Kathleen: Oh okay. So, Christina just hang on a second. Kieran will speak and then over to you, Christina.

Christina: Okay.

Kieran: Christina probably has a better understanding of decreasing …

Kathleen: Okay.

Kieran: … well, integrated tick management in open spaces, so maybe …

Kathleen: Yeah.

Kieran: But in terms of communicating, this was about communicating with healthcare workers. We do have in our plan about how we communicate in a sustained manner with the public. I just don't know. You're absolutely right. Have I changed behaviours? I don't care if they know more about ticks, but are they going to do a daily tick check? Are they going to use DEET? Are they going to decrease their personal risk? So that, we have to do a lot of survey data and use mass-marketing strategies to be effective at behaviour change.

We were good at tobacco, we're getting better at alcohol, Mothers Against Drunk Driving organizations: we can be better at tick management for individuals. And we do use social media, we use Facebook, we use the press, the radio, et cetera, but I honestly don't know, and perhaps this is a research question we should be addressing nationally: "Are we changing behaviours?" Not just of physicians and healthcare workers, but also of the public, at reducing their immediate risk for having a tick adhere to them. And I don't think there's really good science about arachnicides for deer and for …

Kathleen: Right. Well …

Kieran: … white-footed mouse, but I'll leave it to my CDC colleague …

Kathleen: Let's-Christina, yeah. Christina, any thoughts on that?

Christina: [01:53:50]

Yeah. So I wanted to mention a couple of things. There is some research on a vaccine for mice, you know, specifically targeting white-footed mice, but any type of rodents. It's an OSP A vaccine, outer-surface protein A, and it is kind of rolled up in a bait and the mice come and eat it, and then theoretically, then they are vaccinated and resistant to acquiring Borrelia burgdorferi. So, that's been studied. Maria Gomes-Solecki has published a couple, some preliminary papers on that, so you can look for that online, and also some of my colleagues here at CDC are also looking at the mechanism, trying to make the bait and the vaccine the most efficacious possible, and doing some field studies related to that as well. So, it's a very good idea, I'm glad you brought it up and there is some exciting research related to that.

The other thing is bait-boxes that are being studied currently, and what that is it's a box that people can put in their backyards, and it's been studied usually two to three boxes per yard, depending on the size of the yard. And the rodent goes in, gets a little bit of piece of bait, and then goes out of the box, and while they're in there, they're brushed with arachnicides that kills all the ticks that are on the rodent. So, that's been developed and is also being tested for efficacy and optimal use conditions.

Kathleen: Thanks, Christina. Alison wanted to say something.

Alison: [01:55:20] Yes. I think we also have vaccinations for our dogs. So, if we vaccinate our dogs, we're certainly creating a screen around our family. So, at least the dogs are not going to be transmitting disease.

Kathleen: Oh yeah. Yeah.

Alison: But I also wanted to draw your attention to that Australian work that they did. This was a huge campaign in Australia because the skin cancer-both basal-cell and squamous-cell-was so high, and melanoma, and they had this-you should go online, and honestly I want you to all look it up-Sid the Seagull. Have a look at it, because it was this little cartoon and he was basically talking away and he would sing, you know, you know, "Put on a hat. Slap on some sunscreen," and he did this whole little routine. And by doing that, promoting that, in Australia for five years, they've dramatically reduced the skin cancer. This is the kind of slogan …

Kathleen: Yeah, yeah.

Alison: … and this is the kind of effort I think that's needed here, in order to educate people and to get into the kids. It was a fun cartoon, and also they backed it up with the schools, so if the kids came to school, if they didn't have a hat on, they sent them home.

Kathleen: Wow. Mm-hm. Yeah.

Alison: So, it reinforced this whole thing. So I think this is the kind of strategy that would be really helpful for this.

Kathleen: Okay. There's at least five, six, seven questions in queue in the room, and I do need to go, eventually, to the folks joining us virtually, but let's take a question in the room and then I'll go virtual.

Female: [01:56:31]

Thank you. Dr. Moore, in 2013, my daughter's referral to the Kingston General Hospital's infectious disease clinic was denied by your colleague at Queen's University, Dr. Gerald Evans, because she had no recent bull's-eye rash. She never had the rare bull's-eye rash. She had the even rarer lymphocytoma, and she had been sick for a dozen years. Can you tell me, would she today, if she went to-if she had a referral to the clinic, would she be accepted and seen by Dr. Evans or one of-or someone at the clinic? And I just want to add that within seven months of that referral, she received a diagnosis for Lyme disease in Canada and received two and a half years of treatment and she is now in recovery.

Kathleen: [01:57:06]

So, has there-have things evolved over time?

Female: Yes.

Kathleen: Mm-hm.

Kieran: [01:57:34]

I am so sorry, I can't comment on how a physician refers or accepts patients. I don't know Gerald very well. I don't know his clinical practice. I'm happy that your daughter's improved. I would hope that every physician in our area has Lyme disease high up in all of their differentials for undifferentiated fever chills, myalgias, arthralgias, weight loss, neurologic, or joint problems, but I'm sure there are many failed investigations by clinicians in our area.

Kathleen: Still lots of work to do. Well, let me just go to the folks joining us remotely. Operator, do you have anyone for us? Any questions for us?

Operator: Thank you. Once again, as a reminder, please press *1 if you have a question. There are no questions registered at this time.

Female: Okay, thank you. I'm trying to respect the sequencing here and I know you had your hand up a long time.

Shannon: [01:58:26]

Yes, thank you. Thank you, very much. My name is Shannon Coombs and I'm with the Canadian Consumer Specialty Products Association. My member companies make DEET, the product that you're talking about today, and we're very concerned about consumer education, which is the reason I'm here today, to talk about some of the things that a few of the people here have mentioned. And one of the things I work on, of course, is talking to governments.

So, I think that as a result of some of the concerns I heard here today is that we need to ask for a specific campaign to educate consumers. It has to be very targeted, and it has to be targeted to social media and to the young people, Millennials, in particular, but also to educating our children. I have a 10-year-old boy. He goes to camp. So, these things are very important that we teach them early on.

So I think that if we collectively agree that we could ask for a targeted campaign, education program for children and moms and all the other people that were listed as-I think the CDC's done a very good job, but we're very much committed to helping and educating as well, so we're here to help.

Kathleen: [01:59:29]

Thank you. That might be another key message here. I know that the woman at the front in the green T-shirt has also been very patient. So let me just run the mic over to you.

Female: [01:59:42]

This question is for Dr. Moore from KFLA. When you … Do you continue, even though that your area has been endemic, to continue to test ticks?

Kieran: [01:59:59]

We as a health unit don't accept ticks any more. We do what's-you may know as active surveillance. So, we go to areas where we don't have much information on the ticks at present, and we go to those areas. We do active tick dragging and analysis of those ticks. This was, admittedly, not something I wanted to have happen. It was a cost-reduction issue. Would I like more active surveillance? Absolutely, and passive surveillance, but that was a limitation imposed upon us.

Female: [02:00:29]

Because I come from the county Hastings-Prince Edward County, and just two weeks ago, they made the announcement that they were going to stop accepting ticks because it's reached that 20%. And I just think if you continue to do it, you're going to find, over time, more ticks test positive.

Kieran: [02:00:49]

Yeah. As a public health physician trying to protect you, I want to know if Babesiosis is entering, I want to know what percent positivity is remaining high and/or increasing, I want to know if Anaplasmosis is present, and without a good passive and active strategy, we're going to miss out. So, I have concerns as well on these reductions.

Kathleen: [02:01:49]

I'm hoping that some of your answers are being answered-or questions are being answered as we go, because we're going to run out of time. Go ahead, madam.

Female: [02:01:16]

I'm a family physician. I have a couple of quick questions. Do we still think that attachment time is important in terms of infection for Lyme disease? And the second question is, are we into a cycle where if there are no reported cases in an area, there never will be, because physicians think that there isn't Lyme there and they don't diagnose it?

Alison: [02:01:40]

Well, I can address I think the tick attachment time. We used to think that we needed a minimum of 36 hours-you needed to-we used to think that you needed a minimum of 36 hours in order for the Borrelia to be transmitted from the tick into humans. There have been numerous case studies now in the literature reported, and there have been hours with the transmission of the Borrelia. So, I think that is really falling by the wayside.

Kieran: [02:02:07]

So, if you're referring to papers by (indiscernible) of 2011, it was three people and it was self-reported tick-time, and when Reuben Kaufman, who's an expert in arachnids, looked at it and went and weighed the ticks, it was his estimate that ticks were probably on people for five to six days. So, I think there's still debate. Our guidelines are very conservative of 24 hours, that if the tick's been on longer than 24 hours, you just should think of getting prophylaxis, and I'm not confident that there's a lot of good science shorter than that.

Kathleen: [02:02:44]

Still a lot of questions, so I'm going to ask you to be brief with the questions and the answers.

Liz: [02:02:48]

Sorry. Can I just mention that they've done two studies where they show that ticks attach and fall off and re-attach. There were two studies with that, so just because a person says, "Well, I saw the tick go on me," you know, you can't rely on that because it might've been feeding on somebody else earlier.

Female: That's true. Okay?

Diane: [02:03:06]

Hi, my name is Diane Quigley and I am the advocate who runs the support group in Kingston and KFLA. First, I would like to say that no, Dr. Evans would not take anybody. I myself have been denied access for both Lyme and Bartonella, which I am positive Canadian. So, you have a lot of work to do with your associates.

I wanted to talk about the KFLA algorithm and how it is actually being used and how it states that if the tick is under 72 hours of attachment, that you are not to proceed with anything. And to talk about your prophylactic one-doxy. I have talked to 70 people in the Kingston area and not one of them has received even one doxycycline. I've heard of ticks being thrown out at emergency and people leaving with EMs and no treatment. So I'm hearing what you're saying about these wonderful things that are supposed to be happing in KFL&A. However, I'm not experiencing it, nor anybody in my group, so what are we going to do about what you've said and what is true?

Kathleen: So, implementation, sounds maybe like …

Kieran: I'm very sorry if anyone's sending-being sent home with erythema migrans and not being treated and that is a clinician decision. I can't change the 500 frontline healthcare workers' decisions on clinical management. I can provide them with the epidemiologic data, the surveillance, and I'm sorry if that's occurring. I know there's some discussion about whether to prophylax. It is in the Sandford guideline. This is a bible that physicians use at the front kind health-frontline of healthcare and the wording is, "If in endemic area of nympho, partially engorged deer tick you can prophylax with 200 milligrams PO, one dose with food." And you can reduce the incidents …

Female: One dose?

Kieran: One dose.

Female: One dose? Yeah.

Kieran: I'm just reading what this says, okay? And this is based on randomized controlled trials, and a prophylaxic study in an endemic area, you can reduce the incidents from 3 percent in the control group to around 0.4 percent. So a significant-you know that's a ten-times reduction in the incidents of Lyme disease and they follow these patients longitudinally. So it's one option that a physician has. It's not mandatory; it's an option that they can prophylax after an exposure with a tick. I think by the science, it seems reasonable that we can decrease the risk of an individual from one in 50 down to one in 250 chance.

Female: Right on the algorithm that is on the public health website.

Kieran: If it's removed within 72 hours, but been on the patient for more than 24 hours, they can get prophylaxis. And that's consistent with the guidelines and consistent with this. No one can make it mandatory, I mean, we're all-we can only give them guidelines on available best practice. I can't force a physician to treat erythema migrans, but, my God, I would hope they would and I-if they don't, I hope we hold them accountable.

Kathleen: Okay. Let's just go to-there's a lot of other questions.

Arlene: [02:06:41]

Hi, my name is Arlene Riel and I'm from Montreal, where there is no Lyme, at all. "We do have some ticks, but they do not carry Lyme." That was what I was told by the first infectious-disease doctor when I researched the tick and went in with the bite. "No Lyme in Montreal." I went back about seven times, eight times, and I was told that maybe I have a urinary tract infection, maybe I have osteoarthritis. Anyway, I learned more than he knows about Lyme and he was the infectious-disease doctor. And the rheumatologist also told me that-the same thing that everybody else has told-chronic fatigue, arthritis, everything.

I left the hospital, went to another hospital, and I was told by that doctor that I-he's highly suspicious that I have Lyme and put me on doxy for six weeks. Six weeks after six months of no antibiotics, did not really help me. I'm listening to-and I have doctors who've said many things to me. Believe me, we all have, I'm sure and many things we have said to doctors, but I'm listening to, you know, Ontario, and I'm listening to BC, and I'm listening to all this fragmented information because a lot of it does not apply to Quebec. And, people are not-people in Quebec, well in the Montérégie area and in the eastern townships, maybe, but it's, you know, it's not in Montreal. People do-are not aware of ticks. They're not aware of Lyme disease; they're not aware of ticks at all. There is no testing, there's no doctor in emergency who will … There is nothing. So, I'm feeling with all this, that I'm having to put pieces of a puzzle together.

And we're here in Ottawa, which is in Ontario, yes, but I would-I think that because of who we are and why we're all here, all of us, each and every one of us is here to help people who have Lyme disease, but it's not helping us unless we come together as a nation. We must come together and have common ground. We really must. It's not working like this for anybody.

Kieran: Those are wonderful comments and heartfelt, clearly. I think this discussion is great because we're clearly identifying gaps.

Kathleen: Mm-hm.

Kieran: We're not penetrating the medical community knowledge base, even on early identification and treatment. We're not penetrating the population and education and changing behaviours on preventing Lyme and preventing tick-adherence. So we've got-you're right, we've got lots of work to do, but that's the purpose of coming here today is to start strategizing on how we can do better from a surveillance vantage point as well as a prevention vantage point as well as acute treatment.

Kathleen: Okay. Hang on a second, guys. No, no, no. No. No, no, you're answering the questions. Okay. I know that there's two people that I've already committed to, get the questions. There's also-we were supposed to do something before 4:30, which was to kind of identify the key messages we wanted to share. Let me just ask you something and then we'll go back to the questions.

There's a colleague from PHAC who has been taking notes on key messages. Given that we're not probably going to have time to do that together, would you trust me-I'm not with PHAC and I'm not with-I'm totally-I am a totally neutral person, here. You guys want to leave it to me? If you want, I can sort of-from my own notes, you know, pull out-because-and I think what I do-the focus would be on education awareness because that's our-the focus of our workshop. Is I would talk about, you know, some of the key messages that we heard probably fall into two categories. Some are about the content of the messaging …

Alison: Can we take the next time to do that, because I think this is essential. I would prefer to take the time to actually get the key messages. (Inaudible).

Kathleen: Then the questions?

Female: (Inaudible) do that first and then see if there's time for questions.

Kathleen: Oh, okay. So, let me just-because I committed to two people, let me just-I'm going to give them the floor, okay, just out of respect, and then we'll quickly get through key messages and then we'll see if there's more time for questions and if some of you can stay later, maybe we can go a bit later. Okay, but there's-I'll come back to you in a minute, and you, but …

Female: (Inaudible).

Kathleen: You're good. You're good. Okay. Okay, so yeah. Exactly.

[Talking at same time]

Female: I have a really quick question. Does it really matter if it was a nymph tick that bit you or, like, an adult male or female?

Alison No, it doesn't matter.

Female: It does not matter?

Female: They can still carry Lyme. Okay.

Kathleen: Okay. So, I know there's other questions.

Male: [02:11:31]


Kathleen: Yeah, there's one behind me and they're both pleading with me. Three people are pleading with me. So I'm going to ask you guys-can you just hold for a second? Give me five minutes, okay? Give me five minutes. So there's one from you, there's the gentleman over here.

Chris: [02:11:48] (Inaudible).

Kathleen: He's a smart guy. He's a very smart guy. He says, "What if it's relevant to the key messages exercise that we want to do?" Oh, boy.

Alison: State a key message.

Kathleen: Okay.

Chris: [02:12:01]

Okay, by way of introduction, Chris Martin from Lambton County, Ontario. My wife has been diagnosed with Lyme disease a year ago. And a couple of things: 30 years' law enforcement background as a commander with the OPP, I'm currently a professor …

Female: Can't year hear you.

Chris: I'm a currently a professor with public safety at Fanshawe College.

Female: Okay.

Chris: One of the things that's been instilled in policing is the fact that we have a responsibility to maintain the confidence of the public, and we have several civilian body oversights, from SIU, to OIPRD, to OCPC, and on, and on, and on, and mostly, to the public, to maintain their confidence. And this seminar is on prevention. This seminar is about prevention. And Doctor, even though you're doing a great job in Kingston-Frontenac, you've had two people before you identify clear issues in your county, in your jurisdiction, that are issues that involve prevention, so that the next person that steps into that doctor's office doesn't encounter the same problem that that lady had. And you haven't even taken their name to identify what the doctors were nor to identify the issues. So that's more of a point.

And then I refer to the Lambton health unit, which is in an endemic area, covering Pinery Provincial Park, which we live 10 miles to the south of Pinery Provincial Park. My wife had a positive Western blot, positive, um, IGeneX test, symptomatic, and we got the call from the health unit, from a nurse from the health unit that told us over the phone after we left the doctor's office, two months after she took sick, that, "Oh, you've tested positive for Lyme and you've got Lyme." So, even though we just left the doctor's office, we drove to that health unit, where we received misinformation from the nurse.

Now, Ontario-the way Ontario operates-fortunately I've had the experience of that-health units have a direct reporting agency, up, all the way to the head of the province to the minister's office, and all the way down laterally. So I read Lambton's health unit, because I'm thinking since there's an endemic area in Lambton County, that they surely would've taken the time to also develop an action plan. They have not. Furthermore, right on their site-I'll read it to you: "Not all ticks carry Lyme disease. The American dog tick, which is the most common tick found in Lambton Country, does not carry Lyme disease. The black-legged tick, which is not commonly found in Lambton, can spread the Lyme disease bacteria to humans." The misinformation exists across this province, and the very reason that we're here, provides us with an opportunity to share that information about the fact that there is nothing in common, whether it be at a health unit, or whether it be at a practitioner's office.

So I challenge you, because earlier you said, "Oh, please go into your health unit and you can take this document in." There will be no change from any civilian who walks into a health unit to go to the chief medical officer for that county and say, "Oh, can you look at this? We'd like to implement that here." Change comes from top-down in Ontario; it doesn't come from bottom-up. That's the way it's worked. That's the way it'll always work.

Kathleen: Thank you, sir. Okay. Oops. Okay, so there's clearly-let's just identify some key messages, okay? And then if there's extra time, and some of you can stay longer, and our speakers can stay longer, we'll take your questions, okay? But we've just got to get through some of these key messages, okay? So, we've already heard-there's a lot of misinformation out there. There's a patchwork of approaches, and different types of information across the country, and we'd like to see some consistency. We talked about a national or cross-Canada campaign, right, that would be needed. I know that I've got colleagues who are-who have been taking notes on key messages. So let me just ask them what they've been collecting, and as you listen to them, think about, "Are there any important ones missing?" So what types of things have we got?

Female: [02:16:26]

Hi I'm a policy analyst with Public Health Agency of Canada, working on Lyme disease, just so you know where I'm coming from. So I've tried to capture what came out of the discussions, so please let me know if I've missed something. So I think we started especially talking about starting education early-starting education for doctors in medical school, so that they have that information when they go forth into practice. Ensure the doctors have easily accessible, up-to-date information to make the clinical diagnosis. From Dr. Moore who said persistent and consistent education for physicians is needed.

Kathleen: And for them to be persistent.

Female: Absolutely. To educate our physicians so they educate the public. Ensure that physicians have the information about ticks and the tick life cycle that they need. To emphasize that it's always a challenge to reach as many people as possible, but we need to do better at that. And how do we make sure that the messaging it-are actually changing behaviours? So what can we do to make sure that we can measure from what information we've put out there to make sure it has an effect, that it is changing how people act in their life? Make messaging age-appropriate for children, teens, including making sure that the medium itself is age-appropriate. Whether that's technology, online, websites. And that common materials should be available across Canada to make sure that local health … Yeah. I can see your hand …

Female: (Inaudible).

Female: Do you want to add something to that?

Female: (Inaudible).

Female: No, no, it's okay. I just saw your hand go up.

Kathleen: We'll keep going through the list.

Female: So I've got one more, and then we can go back. So it's just the medical community is not being penetrated and there is a lot of work to do.

Kathleen: Yes, still a lot of work to do. So, other key messages that you would like us to record?

Female: [02:18:18]

Yes. In the education for doctors currently in practice and for med students, I would like to see education on the multi-organ and system presentation of Lyme disease, because patients are going in-this happened to me, and I've seen about just every neurologist-and I kept saying, you know, "If my neurologist, my neurosurgeon, and my endocrinologist, and my gastroenterologist, and my internal medicine, and my psychiatrist-if you guys all get together and have a coffee, my life would be so much easier.

I am a nurse. I've been a charge nurse, and inter-disciplinary rounds. Inter-disciplinary rounds are not happening for Lyme disease. And then the other thing is there needs to be education around ethics and communication. Because I don't know what the hell is happening in our system, that there is an apathy, and this is not just for doctors, there needs to be education for frontline workers, including nurses, because as a nurse, I have received some frightening care in the ER because there's a stigma attached to it. When I present with stroke-like symptoms, and a seizure disorder, I'm written off as psychosomatic. "The burnout oncology nurse from small-town Newfoundland," you know? "Little lost lamb in the woods." And then you're written off as psychosomatic, and that happens over and over again. I didn't believe till it happened to me. I see it all the time in other people. So, ethics, communication, and a collaborative, multi-system organ approach.

Kathleen: Excellent. We have that down. Other key messages? Your hand was up first.

Female: [02:19:45]

And I know in Connecticut, they use a system for teaching children in the schools through art. Grade 1s do pictures. They draw pictures of ticks, and they actually do picture messages, "Don't pick a tick out," all of that. That is in Connecticut. It's a very smart thing to do for a Grade 1 student. Maybe not so smart for a Grade 5. But let's teach the little wee ones not to take something out of their body unless they know what it is.

Kathleen: Okay.

Female: Not to put it in, don't pick the tick out.

Kathleen: Key messages.

Female: [02:20:20]


Kathleen: For now.

Female: [02:20:20]

Okay. Very quick. I have a huge issue with the 24-hour rule. My son, when he was four, was bit. It might've been on him for eight, 10 hours, at the most. So we need to remove the limiting 24-hour rule. "The longer it's attached, the greater the load" might be more appropriate. So, not that you can't get it, unless it's on for 24-plus hours. You could get it but it might be a lighter load compared to a, you know …

Kathleen: So, change that message. Okay.

Kathleen: Still has to be treated immediately.

Kathleen: Yes, absolutely.

Female: Still has to be treated immediately.

Female: Not be denied care because it wasn't on for 24 hours.

Female: Right.

Kathleen: Absolutely. Okay, other key messages?

Male: [02:20:57]

There is a stigma to Lyme, and doctors worry about treating people with Lyme. And they worry because of the College of Physicians and Surgeons and the attitude. So, one of our key messages is, we have to get to those …

Kathleen: To those next. Okay.

Male: To those guys particularly to (indiscernible). Another one that no one else has mentioned, it was mentioned in plenary and that is, people with chronic Lyme need disability. And that involves Health Canada and also CPP. So those are messages that need to be brought to those people because you cannot get disability, even though you can't work because of Lyme.

Kathleen: Okay. Sir, could you hand it to me?

Male: [02:21:36]

Can we get people to paraphrase about five to 10 words?

Christine: [02:21:40]

Hello. Yeah. Hi.

Female: (Inaudible) messages short and sweet.

Christine: [02:21:43]

Hi. My name's Christine Fraser and I've been-I was just diagnosed last year with Lyme's but I've had it for 14. So, I would like to see that the-to stop the provincial colleges from charging doctors who are treating Lyme's [sic] because they are the ones that open the door for us. So I think they should be respected very highly for making that move for us all to go forward. I also think that there should be a network as you mentioned, but with everyone-patients, veterinarians, doctors, and researchers.

And also that there be millions of dollars put into the funding that we've seen already to other causes, and that is a huge thing. It can be part of this event because it's federal. And I'd also like to say that everyone here over the commonality is that we're all alone. You feel alone, but your voice as a one is strong, but I think we're really strong together this weekend. So I just want to thank all of you. It's wonderful. Cross-Canada. Thank you.

Neil: [02:22:37]

Hi my name's Neil MacDonald and I'm an advanced-care paramedic in Sudbury, Ontario, just speaking towards our ends in physician education. I do believe that emergency services and things of that nature, we do need a say as well as the collegiate level as well as universities, not just the medical schools. Part of our job is evolving. We do community paramedicine now as well, so not only are we looking at acute pathologies, but after this weekend I really truly believe that we need to start looking into possibly algorithms for early detection.

Going back to this gentleman's point. The stigma with our physicians. If we go into an Emerge department with these signs and symptoms with, you know, my questioning has changed in my own practice. It's very much, "Where have you been? Have you been bitten? Have you been in a, you know, a heavy, forested area." Sudbury, we're not in an epidemic, but, as far as I can gather from this weekend, things are migrating very quickly. So I think that that could be beneficial as well as in that setting.

Kathleen: For sure. I just want to make sure that I-that people I haven't heard from first, okay? Because I want to make sure I give everyone a chance. Madam, I don't think we've heard from you.

Female: [02:23:57]

So, I agree with our paramedic here and the nurse. I'm a pharmacist, and I know zip about Lyme disease. So, you have to educate all the health professionals. Not everybody has a doctor. Some people, for example, up north only see a nurse, extended practice, I guess. But I mean, I get people dropping in and-you go to any Shopper's that's open until midnight. It's an ER, literally. So, you have to educate all the health professionals.

Kathleen: That's a good point. Okay. Others? Madam, and then over to you, sir.

Female: [02:24:30]

Just to comment on passive …

Female: Transmissions?

Female: Surveillance.

Female: Surveillance. Two weeks before Christmas a neighbour of ours has two dogs. Found ticks on each. So I wanted to save the ticks for surveillance. Brought them to the veterinarian, and was sent to Winnipeg. They were identified as winter ticks, and they were never tested because they're not supposed to be carriers. And I think that is a big lack.

Female: Okay. Okay. So, over to you, sir, and then I'm going to check with the folks joining us virtually. Key message.

Aftim: [02:25:22]

Key message, as you asked, five words or less?

Kathleen: Yeah.

Aftim: It's-this is a pandemic. This is a war, right? "Kill the pricks." Okay? Plain and simple.

Kathleen: Now I'm going to …

Aftim: Okay?

Kathleen: We might have to edit that out a little bit. But we get the meaning. It's loud and clear.

Aftim: We can talk all about education we want but we still have to attack the enemy.

Kathleen: Yes. And oh, and I think the DEET representative has something to say about that. Okay. Over to you and then I'm going to check with the folks joining us virtually.

Shannon: [02:25:58]

Okay, just to comment about the-captured the key messages and I just-they're not very action-oriented. They're more observations, and I was hoping we could put some action words, because right now, we could be covered under the four points of what PHAC is doing around surveillance and education of consumers and education of practitioners, but I don't think it captures an action and especially given the passionate …

Kathleen: Tomorrow is all about action. Tomorrow, that's the point.

Shannon: But aren't we going to report back, though? As a group?

Kathleen: Oh, yeah, we'll report back on what was said today. Absolutely. So what was the action messages that you'd like to put …

Shannon: Well, I heard that we want to have better education across all medical practitioners, including the pharmacists. I heard that we want to educate consumers, and that we want better surveillance.

Kathleen: Yeah.

Shannon: And I wasn't too sure about the testing of the-we had a request about better testing for the doctors. I …

Kathleen: Well, and maybe in terms of my report back-because this is the education and awareness, I'll certainly give a lot of attention to the education- and awareness-related actions that we're recommending as well as comments. And I expect the other two groups-there's a group working on surveillance, and there's a group working on guidelines and best practices so I'm sure they're going to talk almost exclusively about testing. So I just want to make sure that I give also a lot of importance to the education and awareness messaging from today. Let me just-can we see if, from the operator-did-were there any key messages that those joining us remotely would like to share?

Des messages …

Operator: Oui.

Kathleen: Oui? Okay?

Operator: We do have a question from Michelle Hogg. Please go ahead.

Michelle: [02:27:32]

Hi. I am Michelle Hogg. I currently live in Ontario, but I am from the Province of Newfoundland, where I was infected (indiscernible) 9 years ago. My question and observation is this, in 2006, I was diagnosed with fibromyalgia. That was my initial diagnosis. My health continued to go downhill. I was diagnosed in 2011 with Lyme disease. I have fielded a lot of questions from fellow Newfoundlanders who are familiar with my story, who have similar symptoms to mine, who have been told by their doctors, their specialists, that "Lyme does not exist in Newfoundland. There are no infected ticks in Newfoundland," and that the only reported case was one little girl last year who was four years old who showed up with the bull's-eye rash.

My question and my suggestion is how do we educate people in provinces like Newfoundland where they are being told by the Department of Public Health, by doctors, by specialists, that "Lyme does not exist in Newfoundland"? How do we address that issue? How do we get information into a province like Newfoundland? And how do we get healthcare professionals in Newfoundland to realize that, yes, there are Lyme-infested ticks in the province? People are becoming infected, and what do we about this?

Kathleen: Mm-hm. Would you like to share your thoughts on how best to reach the-all those people?

Michelle: Well, what I have-last night in my patient speech, instead of telling my own personal story, I decided to focus on (indiscernible) bringing up the key misconceptions about the tick population in Newfoundland …

Kathleen: Mm-hm.

Michelle: Those observations were that recent studies and recent media have said that, you know, the tick population is growing in Newfoundland based on climate change and an increase in whitetail deer, but in my research, I discovered that studies have been done and seabirds like the puffins, like-dating back to 1991 and earlier than that. So, to state that there have been no tick populations in Newfoundland, no permanent tick populations, I think that that's a false statement and I would like to see that some of this research comes to light, it is made public, Newfoundlanders are made aware that they can indeed become infected in Newfoundland and to be educated.

Kathleen: Okay.

Michelle: Doctors need to be educated there. Healthcare professionals need to be educated as well.

Kathleen: Yeah. Okay, well I believe that Liz has a comment to add, madam. Go ahead. Liz.

Liz: Well just on towards key messages.

Kathleen: Mm-hm.

Liz: I think a key message that we have to include is the role of patient preference. I really applaud all the work that KFLA has been doing in educating and all that, but again with that, there's an algorithm, which is very easy for doctors. As a doctor I love an algorithm because it just tells me what to do right away. But it's not like that in tick-borne illness, and so, if we can educate physicians about the role of patient preference.

Kathleen: Mm-hm.

Liz: That's not a new thing, we do it when we're discussing hormone-replacement therapy at menopause. We don't say, "Oh, you turned 50. You have to take it," or, "You turn 50. You don't," or whatever.

Kathleen: Mm-hm. Mm-hm.

Liz: So, we have to educate them to educate patients more fully and understand patient preference.

Kathleen: Thank you, Liz. There's another key message, maybe?

Female: [02:31:25]

Oh, yeah. I just wanted to make a statement that he's a paramedic, I'm a dental hygienist, you're a nurse-you're a-you know, we all have to update our CPR every year. Maybe this is something that the CPR people can implement in their program and that way whoever's a healthcare provider that needs to renew their yearly …

Kathleen: That's a really good idea because it's …

Male: That's a great idea.

Kathleen: Because it's a great way of reaching everyone on a regular basis, right? Yeah?

Female: Yeah.

Male: [02:31:53]

So I think something we kind of missed was like we all know that the blood testing's not going to be good for a while and same with the clinical trials. Like we're not going to learn certain things for a while. So, it's like, in the in-between time, while they're figuring that out, how are we going to make people aware of things like-like it's not proven yet if it's sexually transmitted. For sure, it's not proven yet if-even through saliva. It's not proven yet through blood all those things.

Look, that's not proven, but it's still a possibility, so it's like, is it worth it to warn people beforehand so that-like, are we going to wait five years or whatever when the tests come out and then warn people, or should we tell them before? Because it's like, I said this last night, like any of us right now, because the ELISA testing is so inaccurate, we could donate blood to anywhere right now. And then that could just be transferred to somebody else, right? So …

Kathleen: So, include the risks in communication.

Male: For sure. Yeah. Because even if we're wrong, like at least there-it's being prevented, right? So …

Kathleen: Okay? Good. Okay. Other comments, key messages that we want to share tomorrow? Education awareness …

Female: [02:32:58]

Sorry, this is just quick. I have a friend whose daughter had a tick on her head. So, she called me in a panic wondering what to do, so I sent her to the doctor, and I gave her government forms stating what should be done-in this tick. So, she brought the tick with her, they couldn't identify what kind of tick it was, and they were not going to give her antibiotics. So, she showed them the documents, and it showed what they should be giving, and she pushed. Three doctors came in the room, had a conference on whether or not they should treat it or not, and our Infectious Disease has indicated, that I've heard on TV interviews, that we have one out of five of those black-legged ticks that are carrying the infection. She ended up taking up the ticks to the entomologist because the doctors couldn't identify it. It was a black-legged tick but she had to fight tooth-and-nail to get those antibiotics.

If we're telling people to do tick checks, and telling them to wait for symptoms, we're not fixing the problem. And that's one thing that I would like in whatever goes forward in this framework, is how to handle cases like that. Because I know for me, and what we've gone through, I wouldn't want anybody to wait and I would give the antibiotics and be safe and save all of us a lot of hassle. But she only got them with three doctors and the letter from the government.

Kathleen: Go ahead, Alison.

Alison: [02:34:16]

So I think that's one of our-I would like to see a major message-change. If you do get bit by a tick, I really think you should get treatment with antibiotics. I think you've got a few pills' worth-a long life of misery. So, from my perspective, I think we should change our message.

And I think it's something that we have to-but we haven't decided on that and this is the message that we have to decide as a group here. So, and I think this is a very-and the other thing is that it doesn't matter if you live in an endemic area or not. The birds fly in. The birds fly out. So, I don't think you need to wait to find out if you're in an endemic area or not. I think you should treat if you're bitten by a tick. That's my personal opinion.

Kathleen: Okay. So, okay. So, we will include that message for sure tomorrow. Absolutely.

Female: In Winnipeg, the media picked up on that …

Kathleen: Okay. Let me just ask you this and then let me ask our speakers. Are you able to stay another little bit? I don't want to force you to stay much longer, but-yes? You're able to stay a little bit? Christina? Can you stay a little bit longer?

Christina: [02:35:20]

Yes, that's fine.

Kathleen: Okay. So, we'll continue with our questions.

Male: [02:35:24]

And ounce of prevention is worth a pound of cure.

Female: That could be our motto.

Male: Yes.

Kathleen: Absolutely. Okay.

Female: (Inaudible).

Female: [02:35:34]

I've been working with the Ontario Lyme Alliance, and we're the lobby group for Ontario, so we meet with the minister, and we're in the legislature, and we do all of it on a volunteer basis on behalf of all of you. So I just didn't know if you knew about that, so please check out the website. But most importantly is what we've discovered and I find appalling as a municipal worker that has contracted Lyme and lost a lot, like many of you, is that there is absolutely no communication from your legislature when a bill is passed to your public health. And there is no communication between each and individual public health, even though there's an association. We had the privilege of working with Dr. Moore on a conference call, and we were so grateful that he knew what we were talking about, because we weren't getting anywhere with anybody. And so you need to know that your minister and your MPPs need to have your letters and communication.

And we need to have a consistency of care and prevention. Hamilton is now 41 percent infection rate with ticks. And we haven't even told our public. We sent the report to Public Health. And I have a relationship with them. They're lovely people but we've got day camps going out in the Dundas conservation area. We've got all kinds of kids that are going in different areas. I've been bitten three times in the Hamilton area. I'm an avid hiker and outdoorsman. And we are not taking the responsibility to communicate. Sudbury had horses. Wherever you have animals. We aren't even communicating with our veterinarians as to what they're seeing in dogs and what's happening in the public. You know, and…

Female: (Inaudible).

Female: … the areas that are doing jobs and moving forward, it may not be perfect, but it's way better than anything else in Ontario and Canada.

Kathleen: Okay. Good. Let me just…Okay.

Female: [02:37:19]

Just really quickly, I just want to say that I-going-that-that I've been going around trying to advocate for Lyme disease and so on. And I went to the YMCAs and I said, "Would I be able to meet with your camp director? Would I be able to meet with your counsellors?" Just to give them a heads-up, to inform them.

And the answer to me was, "That would just instill fear in the parents, and they would not want to send their kids to camp." I said, "Are you freaking joking me? Let them get bitten by a tick and come home with a Lyme disease? That's okay?" But this is the mentality of the people who have not-the consumer-those who've not been touched by Lyme.

Kathleen: But you are raising a good vehicle, though, which is through people …

Female: Well, trying to …

Female: Yeah. Well, absolutely.

Female: Discouraging. It's very discouraging.

Kathleen: Yeah. Okay. Let me just see if there are people that are joining us remotely that would like to ask a few questions before we close. Operator, do we have anything?

Operator: Thank you, once again, if you have a question, please press *1 on your telephone keypad.

Kathleen: Okay, there's …

Operator: There are no questions registered at this time.

Kathleen: Okay. Good. I have a message here that the-just in terms of timing-the first shuttle bus back to the Sheraton leaves at 4:45, and the second leaves at 5:15. Okay? It's just to make sure everyone's aware of the logistics. So, any other questions? So what's going to happen is, I hope you guys trust me to do my best with those messages. I'll report them tomorrow, and Dan's going to, anyways, open the floor. So, you know, if I've forgotten something or didn't get it quite right, you'll be able to kind of correct me.

Male: [02:39:04]

Just one more quick question. Sorry. So I was just curious, does anybody know, like, the people who would put the commercials on TV, the media, like, who would we contact to even to ask that, or anything like that? Does anybody know of who to call? Stuff like that. Like which one?

Kathleen: Do you need-repeat your question to …

Male: Like, so, if we were trying to get commercials for Lyme disease put on TV, like who would we have to contact? The companies themselves? Is there a certain, like …

Kathleen: If you wanted the Public Health Agency to do that?

Male: Sure, I guess, yeah. Yeah. Public Agen-okay.

Kathleen: You'd have to talk to them.

Male: Okay. Cool. That was it. I was just curious.

Female: (Indiscernible)

Kathleen: Okay, guys. Please thank our speakers because they were on the hot seat a few times there. Thank you.

Kathleen: We'll see you guys tomorrow at nine, I hope, okay? Nine o'clock start.

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