Jordan: Today, a disease, a complicated disease that we are having trouble testing for. A disease we never expected to see with any regularity in Canada. Only to realize, perhaps too late, that maybe that was dumb. No, this is not a new virus from across the world. It’s not some weird super bug. It’s not particularly contagious. It is an illness, that you probably don’t think much about until . It makes headlines because somebody famous has it.
News Clip: Something was wrong with Justin Bieber last year. Everybody saw it and we saw him with IVs in his arm. We now know what was going on here. Justin Bieber has Lyme disease.
Jordan: But it is a mistake to think of Lyme disease as a rare illness because all of the data we have, and we still don’t have enough, shows that it is exploding in Canada with numbers of confirmed cases spiking every year. You get one guess as to why, but even that is not the key problem here. What we need to figure out, and fast, is a comprehensive way to test for diagnose and treat Lyme disease because that’s where we lag behind almost everybody else. I’m Jordan Heath Rawlings. This is The Big Story. Janet Sperling is a PhD candidate at the University of Alberta. She is also a board member on the Canadian Lyme Disease Foundation. Hello, Janet.
Janet: Hello.
Jordan: Why don’t you just start, um, I think all of us know the term, but, uh, maybe just explain what Lyme disease is.
Janet: Sure. Lyme disease is one of the more complicated things. You would hope that I should be able to say, Oh, Lyme disease is a, you know, a bacterial illness and it’s transmitted by a tick. But unfortunately, when you peek under the covers, it gets a little more complicated. So if you go to the government of Canada website, you’ll see that Lyme disease is Borrelia Burgdorferi, and you say, Oh, okay, that’s nice and easy. I can follow what they’re trying to say. But now if we just step over the border a little bit to Minnesota and we look up the Mayo clinic, they say Lyme disease is four main species of bacteria. And then they list four types of Borrelia. So now you know your head is spinning and you say, okay, well what do they say in Europe? So if we go to Europe and we go, for example, to Germany, we see Lyme disease is caused by spirochetes of Borrelia burgdorferi sensulato, which means it’s a whole bunch of different Borrelia. So this is part of the reason that we’re ending up with a really complicated answer to what ought to be a very simple question.
Jordan: Why do various countries disagree so much on precisely what it is? That’s not the case with most, uh, viruses or diseases, I assume?
Janet: Right. And I think this is one of the things is that when I first started, like, you know, back in the 1980s and I took my medical entomology, they said, Lyme disease is a disease. It happens in North America. It’s transmitted by a tick. So I wrote that down on my exams and I got a a hundred percent and everybody said, great. And I said to myself, boy, I’m glad I live in Canada because I don’t need to worry about Lyme disease. But the more we started to find out about Lyme disease, the more we realized it is actually in Europe. It’s been in Europe for a very, very long time. For example, uh, you know, Otzi, the ice man who was found, uh, you know, he’s bronze age, I think, you know, way back in a glacier that thawed, he had evidence of Lyme disease, so we know. Yeah, we know we’ve had Lyme disease around for a long time. People just didn’t recognize it as Lyme disease. So the more you look into it, the more you see that this is something, it’s called a zoonotic disease. So it’s found circulating in the wildlife and then it kind of jumps over to the people. Although the disease itself really isn’t aiming for people. So this isn’t something like measles. Measles is something that goes from one person to the other person. This is something that’s circulating in– it’s got a birds involved in this cycle. It’s got animals, you know, deer, mice, all sorts of things. So this is why it just becomes more and more complicated the more you look at it. And of course as a person who suffering from Lyme disease, you really don’t care about all that background. You’re just saying, I’m sick. Just get me better. And the advantage of being a bacteria is that means we can use antibiotics. So I think previously people were being treated for Lyme disease without even actually recognizing it was Lyme disease. They had antibiotics for some other reason. They got better. Everybody said, okay, I don’t know what it was, but they’re better. Now we’re very concerned that we want to make sure that we don’t overuse the antibiotics. So that ends up making it even more complicated. So we have the people, we know they’re sick, we know that they got bit by a tick. We know that something is wrong. So some of the doctors are saying, okay, we’ll give them the antibiotic, can see if they get better. So those people say, I think it’s Lyme disease and other people say, I don’t think it was Lyme disease at all. It was something else. It was transmitted by a tick, but it wasn’t Lyme disease. So now we’ve taken a really complicated problem and we’ve really muddied the waters. We have people who say, I have Lyme disease and other people who say whatever it was, it wasn’t Lyme disease, but I’m glad they got better.
Jordan: So if the waters are so muddy. And to your point, the description you gave about learning about Lyme disease in the 80s was precisely as much as I knew about Lyme disease, period. Um, why are we discussing it so much more frequently right now? Are we seeing a spike?
Janet: Absolutely. And I think certainly was the global climate change. We’re getting, the tick has expanded its range. So you know, back in the 1980s certainly ticks in Alberta stopped about, sort of middle of the problems. You didn’t have to go very far. Well, now they’re all the way out into the Yukon. So this is something that’s changed. It’s, it’s new. I think we’ve always had, you know, a couple of ticks here and there and the other place, but now it’s much bigger. We know that most Canadians live right along the U S border, so we know most of our population is sort of super at risk as the ticks start moving North.
Jordan: Do we have a sense of how quickly the problem is getting worse? Like do you guys have have numbers on that as to how quickly the number of cases are rising?
Janet: Well, we don’t, we don’t have numbers because the numbers are set to be very, very specific to Borrelia burgdorferi. And then it’s a particular strain, B 31 that somebody described in basically Boston, Massachusetts, Lyme, Connecticut, down in that end. So for Canada, it’s kind of difficult to say. You can say, you know, if you’re looking very, very strictly for one type of Lyme disease, we know that the numbers have increased hugely. But we also know it would be kind of unlikely that British Columbia would have exactly the same type of Lyme disease as Boston, Massachusetts. You know, there’s a lot of kilometers in between the two. And then also, um, there’s a huge mountain range. And then to make it one stage more complicated, they even have a different species of tick. So this is where people get annoyed because they say, I’m sick. I think I have Lyme disease because you treated me as though I have Lyme disease, but still it’s being denied as being Lyme disease or even anything like Lyme disease.
Jordan: Why don’t we have a simple test that can categorize it as one of what may be many kinds of Lyme disease, for instance?
Janet: Right? Well, we do if you’re a dog, so if you’re a dog, your vet can go and test the dog and say, okay, you have a sick dog. That dog is being picked up to have this general sense of this is Lyme disease, Lyme Borrelia of some sort. So your vet will probably just treat your dog and say, I’m calling it Lyme disease. Good enough for me. Take your antibiotics and get better.
Jordan: Okay, but humans?
Janet: Humans don’t have exactly the same immune response. So a dog has a much stronger immune response. So it makes it easier when you’re a vet. And also with the humans, people are so worried about antibiotics that you have to absolutely nail the diagnosis before they’re willing to give you the antibiotics in the first place.
Jordan: And that makes sense because we have talked on this podcast in the past about the need to not use antibiotics unless it’s serious. I guess what’s flummoxing me a little bit is that this can be a disease that’s on the rise that’s diagnosed in many places around the world, and there’s still not the same kind of credible test that can determine like, okay, you need antibiotics, let’s go.
Janet: Right. I think partly it’s because it circulates among birds. It circulates among various little like mice and small rodents, all the way up to deer. And that each one of these animals that’s part of this really complicated cycle, the deer can actually clear the infection. So for example, if I had a tick and I knew that that tick had most recently fed on a bird, I would be quite worried. Or if I knew it had most recently said on a mouse, but if I knew that the last thing that tick set on was it deer, I wouldn’t be very worried at all. I would say, Oh, okay. Fortunately, that’s a very low risk from that particular tick. So this is where I think people, especially if you’re a doctor and you’ve got somebody and they have very nonspecific symptoms, because that’s one of the problems. There’s nothing that’s really obviously, this is exactly Lyme disease. You know, you can’t stand at the front of the room and say, okay, these people have Lyme disease and these people don’t have Lyme disease. So you look at people, they’ve got these nonspecific symptoms, and you’re saying, I know they’re sick, but I just don’t know what it is. We’re going to start looking at a lot of different things. So there’s this big list of differential diagnoses you need to go through, and then when you get to the bottom of the list, you always have Lyme disease. And that’s something that was missed for many, many decades. And for example, I live in Alberta and we’re still told, Oh no, you can’t have Lyme disease cause you live in Alberta. But the silly thing is that people travel. And when people are traveling, it doesn’t matter where I live, where my house address is. If I live in Alberta, maybe I got it in California, maybe I got it in Toronto.
Jordan: Well in speaking of California, you probably knew at some point in this interview I was going to mention Justin Bieber.
Janet: Indeed.
Jordan: And it gets back to kind of the problem that you’re describing because when celebrities like that come out and announce that they’ve been battling Lyme disease, it often seems like he has the best medical care in the world, right? He can pay millions of dollars for the very best doctors, and yet still, uh, people were worrying about him for months before he came forward.
Janet: Exactly. And that’s, I think it’s actually a very common story. And if you were to take your average Canadian, generally they’re healthy people, they’re out living their lives, eating well, sleeping well, plenty of exercise, and then suddenly something happens, they get sick. And they don’t even necessarily associate it with a tick bite. And especially in a place where you’re not expecting to run into ticks, like downtown Toronto. You might not think about it. And as you get sicker and sicker and sicker, Lyme disease isn’t even on the radar. So it takes a long time to figure out what it is. And the problem with Lyme disease is if you catch it early, it’s very easy to treat. Take your antibiotics, end of the story. But if you don’t catch it early and it goes on for a long time, like weeks or months or sometimes even years, it’s really, really hard to treat.
Jordan: People were saying, and this is why I wanted to ask you about like how it presents, how the disease presents, because people were saying that it looked like Justin had lapsed and that he was an addict and that he was really struggling with substance abuse.
Janet: Right. And, and I think that that’s actually remarkably common. And a lot of people find that obviously really hurtful. And you can certainly understand why, if you’ve been a perfectly healthy person all your life, and suddenly you’re struck down by something and the response is, Oh, you know, what’s the matter with them? They must be, you know, drinking too much, or, you know, whatever. And you can see why people are upset. And this is where we absolutely need a better diagnosis, we need a better way to tell, do these people have Lyme disease or don’t they have Lyme disease? We’re just not at that point right now. And I think historically what happened was it, the diagnosis got narrowed off far too quickly. So they said, for example, this government of Canada website, Lyme disease is Borrelia burgdorferi. But when you limit yourself to just one type of Lyme disease, you can be missing the lion’s share of Lyme disease unless, you know, unless you happen to be one of the people who gets exactly Borrelia burgdorferi, uh, you know, you’re just out of luck. And as an example here, is the way, partly the way we test for it is we have the first screening test and a fair number of people will be positive on that screening test because it does pick up Borrelia the way it’s found in Europe. It also picks up Borrelia the way it’s found in North America. But then they take it to the second level and with the second level, you have to have five bands on this particular blot, it’s called the Western blot, and supposing you only have four. Now, supposing you have every sign and symptom of Lyme disease. Supposing you have the positive screening test, and supposing you only have four bands on a Western blot, you’re out of luck. You’re told, I don’t know what it is. But it’s not Lyme disease. And yet we know that that’s really kind of silly because if you go to Europe and you have exactly the same test, they have a different number of bands. So for example, you could have the same individual tested in Canada and also tested in Germany and in Germany, the German doctor would say, Oh, wow, you know, positive screening test, all the signs and symptoms, four bands on a Western blot. Good enough for me. Let’s just treat them.
Jordan: So why don’t we have those tests in Canada and who’s behind the movement to push for them? And what does it take?
Janet: Well, I would say that the biggest push for all the change is the many, many people, the many ordinary Canadians who have Lyme disease, and they keep saying this is just ridiculous. So at the same time as we have this massive number of people who are standing up and saying, you know, we’re sick, we need help. Then we have other people who are saying, no, no, no, but you don’t understand. This is sort of tribalism. You know, these people, they think they’re sick, but look, they can’t be that sick because they’re even able to stand. And if they can stand, they’re obviously not that sick. So then you get into this kind of thing, just like what happened with Justin Bieber. You say, Oh wow. Maybe they had Lyme disease at one point, but they couldn’t possibly have Lyme disease right now because they look too well. And that’s just adding into all of this complication. So I think there’s definitely recently, and it’s surprisingly recent, that there’s a recognition we need a better blood test. Right now the blood test doesn’t work if you test too early. And I can give you an example. In Ontario, there’s a lady and she has the ticks in her own backyard. She’s in an area which is a known endemic area. So everybody says, you get bit by the tick, you should be treated for Lyme disease. So she goes to the doctor. The doctor has to remove the tick that’s been on her back for both three days or so, and removes this tick and says, Oh my, let’s test you for Lyme disease. So they test her for Lyme disease, but she’s negative. But that doesn’t mean anything, because it takes a couple of weeks to be able to produce an antibody response so that the blood tests can even pick up that you have lung disease. So this is where some of this confusion is happening, is that there’s a belief that the blood test is better than it is. So there really wasn’t any incentive to improve the blood tests because the doctors were saying, no, no, it’s a perfectly fine blood test. Don’t worry about it. Now we recognize we have to change that because it’s obviously not working. We have far too many sick people, but there’s sort of, um, uh, conservatism and I sympathize with the idea that we don’t want to go around blanketing the world with antibiotics, but we also have to recognize that people are being missed. And when you recognize that it’s a lot easier to treat it early, that becomes an even bigger problem. So we have to recognize that there’s lots of different types of Lyme disease. And that’s actually where my research comes in. I look at the tick and I say, if it has the Borrelia, what type of Borrelia? And that’s a really fascinating thing, and it’s, it’s a great, you know, Canadian research. I think that it’s going to see us a long way to figure out exactly what we need to be targeting in each region and Canada. Um, but again, that takes time. And it really is only a very recent recognition that this is even a problem. You know, up until recently people were saying, Oh, well, if, if he got bit by a tick in Alberta, it’s a total non-issue. You can safely ignore it.
Jordan: Right. And so let’s be practical for a second then. What do people need to watch for right away?
Janet: Right. Well, first of all, if you think you see a tick, you probably did, and a lot of Canadians don’t even recognize it. Tick. So now, you know, go online, check it out. You got to see what a tick looks like. If you’re out hiking. Fortunately, you can usually pick up the tick before it actually attaches. So if you don’t have the tick attach, that’s excellent. You could wear long pants. You could tuck your socks, you know, the pant into the socks at the end, you could get permethrin treated clothing. This is, uh, sort of got, um, something that’ll kill the ticks when they’re just walking on you before they even touch you. You could wear DEET, you could wear a cardigan, you could have all sorts of ways of preventing the tick from actually biting you. So that’s the very best thing. So now that we know that we have a problem, when we go out, it’s kind of like putting sunscreen on and putting on a sun hat. You see, okay, I’m going to remember we have a problem with ticks around here. I’m going to avoid being a meal for a tick. And then the second thing is, once you know that you’re looking for these ticks, you’re going to get your buddy to keep an eye on you. So when you’re walking along the path, if your friend says, Whoa, what’s that? And it might just be a beetle, but it might be a tick. You just have to make sure that you’re tuned into the idea that you want to get that tick off before it even attaches.
Jordan: Should you save it?
Janet: Yeah, absolutely. I would, I would for sure save it. But if you can take that tick and put it in a Ziploc baggie, write the date on it and where you picked the tick up and then pop it in the freezer. Especially if it could be your chest freezer. That’s the best, because they don’t do the freeze thaw cycles. That way if you do get sick afterwards, you could have that tick tested and that would really help the doctor to say, okay, maybe it wasn’t Lyme disease in this case. Maybe it was one of the other co-infections that goes along with Lyme disease. So that would be a really helpful piece of information for the doctor. The other, the other reason to keep this tick is sometimes that you’ll hand it to an entomologist and an entomologist will say, actually, that’s not really a tick. That’s something else. And that helps to guide. Uh, the doctor, because the different types of ticks carry different diseases, different insects can carry different diseases. And it’s a really quick thing. It’s like a 30 second thing for an entomologist to look at this and say, yep, that’s Lyme disease tick, or Nope, that’s the tick, the wood tick. And it’s more likely to carry something like Rocky Mountain Spotted Fever.
Jordan: Well now I know, uh, I’m going to be a little more paranoid every time I go walking this spring.
Janet: Oh, no, no, no, no. Exactly. And that’s the whole thing. It’s, all you really needed to know was that this was a problem. Now that you know it, you can head out there, you can do your hiking, you can do everything you want, and you can relax. Because one of the problems previously, even as an entomologist, I hadn’t seen the ticks. Well, now we know they’re there, and all I need to know is that they’re there and I can protect myself. So, you know, we used to think when we went hiking, we were all worried about bears, for example. Well, now we know we can see a bear. Well with the tick. Now that I know that I might actually be running into the tick, it means that now I can take all these kind of measures and say, if I do end up getting bit by a tick, I’m going straight to the doctor. I’m not going to just wait it out. I would have previously, you know, knowing what I know now, I would not have done what I did before. And that is I will go straight to my doctor. I would say, I found this tick. It was attached to me on such and such a date. I’m concerned. What are we going to do about it? And then you get your doctor and you work with your doctor to work out exactly how you’re going to treat. Uh, you know, especially if you find you get this bite and you get sick or you get the tick bite and you get this expanding rash. Don’t ignore it. Like, just straight to the doctor. Don’t, don’t pause, go straight to the doctor and say, I have a tick bite. I have an expanding rash. I’m really afraid I might’ve been exposed to Lyme disease.
Jordan: Well, we will be vigilant and uh, hopefully you continue to work on a better method of testing.
Janet: Thank you.
Jordan: Janet Sperling of the Canadian Lyme Disease Foundation. That was The Big Story. If you would like more head to thebigstorypodcast.ca. If you’d like to talk to us, we are always on Twitter at @thebigstoryFPN and we are, as always in every single podcast player you can think of as well as at frequencypodcastnetwork.com. If your podcast player allows you to review this podcast, we would very much like it if you would. Thanks for listening, I’m Jordan Heath Rawlings. We’ll talk tomorrow.
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