59. Reflecting on Lyme disease in Canada with Janet Sperling

Janet Sperling is an entomologist, researcher and president of the Canadian Lyme Disease Foundation. During her early years studying entomology, she recalls that at that time, Lyme disease seemed very simple. When living in the US, Janet interacted with several people that had a much broader understanding of the disease. When her son contracted Lyme disease years later, it became evident how complicated the disease could be. She points out that not only is it very complicated, it can be very different from one person to the next. 

Delving into the research

In order to better understand the disease, Janet dove into the peer reviewed literature and eventually wrote a paper with her husband who is also an entomologist. She points out that although we often refer to the disease as Lyme, people can have co-infections of Lyme as well. Janet explains that in order to learn more about these co-infections, she decided to research them as part of her studies.

Joining forces with CanLyme

When Janet decided she wanted to get more involved, she reached out to CanLyme president Jim Wilson to see if he needed any help. She became a board member and took on a variety of roles before becoming president herself. Janet recognizes the incredible work that Jim Wilson has done advocating for patients for the past twenty years.

“Instead of seeing Lyme disease as a very simple to diagnose, simple to treat disease, we realize it’s very complicated and it’s very different from one person to the next.”

Janet Sperling, PhD

Research that helps patients 

Janet describes next generation sequencing, a process that involves bioinformatics in order to better understand complex DNA. Janet points out that the research environment around Lyme disease is also complicated and even political at times. She explains that CanLyme funds research that is focussed on patients. She also stresses the importance of evaluating treatments based on how patients are responding to the treatment they’re receiving. 

“Ticks carry more than just Lyme disease. So, what if some of the problem is, we’re saying someone has Lyme disease when they actually have…one of the co-infections. Maybe they have Lyme disease and something else.”

Janet Sperling, PhD

IDSA guidelines fall short for many patients

Many Canadian patients have turned to the US for treatment when they face barriers within the Canadian healthcare system. Janet points out that not only is there a shortage of family doctors here, but many doctors follow guidelines set out by the Infectious Diseases Society of America, or IDSA, which fail to address the health issues of many Lyme patients. She also notes that doctors who treat Lyme disease outside of the IDSA guidelines have been called to task leaving very few who are able to properly treat the disease. There is a broader understanding of the disease in the US in contrast to what is supported by health associations in Canada.

“The (IDSA) guideline is part of the problem, and an even bigger part of the problem is actually getting the diagnosis. Most family doctors don’t want to make the diagnosis, partly because it’s a difficult diagnosis and partly because it’s a political diagnosis…(family doctors) kept getting called to task.”

Janet Sperling, PhD

Lyme disease: a Canada wide problem

Janet also explains that in the 1980’s there were more doctors that were openly treating Lyme disease. Although the issue of Lyme disease has been deferred over the years, Janet points out that it is a complex disease that has now become everyone’s problem. She also emphasizes the importance of considering a patient’s travel history when making the diagnosis of Lyme disease.

Reducing antibiotic use through early and adequate treatment

Janet discusses her perspective on what needs to happen to improve the situation for Lyme patients in Canada. She talks about keeping the focus on patients while reducing antibiotic use through early and adequate treatment. Janet also emphasizes the need for more research, including research that considers co-infections and genetic variations between patients.

 “We support the doctors who would like to learn more about Lyme disease…by giving educational grants for them to go and learn more from the people (at ILADS) who have a lot of experience with not only Lyme disease, but the other tick-borne illnesses that come along with Lyme disease.”

Janet Sperling, PhD

Supporting patients 

Listening to and believing patients when they say they are sick is an important first step for patients to receive the medical care they need. Janet also suggests that patients learn as much as they can, and seek out a second opinion if needed.

Education is key for patients and their healthcare providers

Janet describes some of the ways CanLyme supports education and awareness through the podcast and website and other initiatives, and supports clinician education through their International Lyme and Associated Diseases Society, or ILADS, educational grant program.

Research that helps Canadian patients 

In order to seek out solutions that will help Canadian patients, Janet explains that research needs to be patient and solution focussed and that it is relevant to the pathogen species that are emerging across the country. She cites recent CanLyme funded research that illustrates the challenges of receiving a diagnosis and treatment for Lyme disease from the perspective of a Canadian youth. Janet also refers listeners to the Geneticks website to find out more about where ticks are being submitted from and which ones test positive for Lyme and other tick-borne pathogens. Thank you Janet for the work you are doing with CanLyme to support Canadian Lyme patients and their healthcare providers!

“Check out the Geneticks website and you can start to see where people are submitting ticks that are positive for Lyme disease.”

Janet Sperling, PhD

Transcript

Catherine Kinsella: Welcome to Looking at Lyme, an educational podcast of the Canadian Lyme Disease Foundation designed to increase awareness, empower listeners with expert knowledge, and explore solutions. I’m Catherine Kinsella.

Sofia Osborne: And I’m Sofia Osborne.

Catherine Kinsella: In this podcast, we welcome back Janet Sperling, entomologist and president of CanLyme. Janet joined us back in season 1 episode 3 to talk about ticks and their behaviour.

Today, we broaden the lens to discover how Janet became involved with Lyme disease and to better understand her perspective on the landscape of Lyme disease in Canada. Welcome to the podcast, Janet.

Janet Sperling: Thank you, Catherine.

So I was listening to your last looking at Lyme podcast from August of 2020, and I thought it was so interesting to hear you talk about tick biology and how they spread. And I was curious what you learned about Lyme disease and other tick borne diseases when you first started studying to be an entomologist?

Sure. When I was first learning about Lyme disease, this is when it, would have been back in the 19 early 1980s. It was a very new disease. And so I knew how to write all the answers to the questions for the exam, and I got a really good mark, and it seemed really simple. So it was very surprising to me, decades later, my oldest son got Lyme disease, and everything that I thought I knew about Lyme disease just had to go right out the window.

So I think we’ve made a lot of tremendous progress. Instead of seeing Lyme disease as a very simple to diagnose, simple to treat disease, we realize it’s very complicated, and it’s very different from one person to the next.

And so when your son was diagnosed with Lyme disease, is that how you first became interested in learning more about it?

Yeah. Partly. But during my undergrad, I took, you know, medical veterinary entomology from an actual entomologist who was interested in this. And so I piqued my interest, but I do remember saying to myself, gee, I’m glad it’s only in the US. I don’t need to worry about it.

I live in Canada. But then we ended up going to the US, my husband got a job down there, and I ran into a number of the early researchers and I know that I really had to change my idea on what Lyme disease was starting at that point, and that’s when the my boy was first born. And then we moved over to California and I met more Lyme disease researchers. And I realized even though I knew it was complicated, I had only scratched the surface. So it’s something that’s sort of been in the back of my mind for quite a while, but I kept thinking, boy, I’m glad I don’t personally have to worry about this.

And so it was really unfortunate when I had to learn more about it, more than I actually wanted to know about it.

Yeah. Of course. And so when you decided that, you know, you needed to learn more about it, how did you go about educating yourself about Lyme disease?

Well, the first thing is I dove into the peer reviewed literature because that’s what, as all good scientists do, we say, it must be in the peer reviewed literature somewhere. If I can look hard enough, I can find the answer.’ And the more I looked, the more I thought, I’m getting conflicting answers.’ So that was the first thing. We ended up writing a review paper on this for the Canadian entomologist. This is my husband and I. And I think we did a pretty good job of taking a look at what was known at that point.

The paper is now kind of old. I’m really glad that it’s not seriously out of date. But one of the things that struck me is ticks carry more than just Lyme disease. So what if some of the problem is we’re saying somebody has Lyme disease when they actually have, you know, maybe one of the coinfections? Maybe they have Lyme disease and something else.

So I kept complaining and I kept saying, we’ve got all this great next generation sequencing. We can do this. We can find the answer. Why won’t somebody do it? And eventually my husband said, you know, I’m tired of listening to you complain.

He said, why don’t you just do it yourself? And so at that point, I found a professor who would sponsor me and I decided to get into learning more about the coinfections that are carried by the ticks.

Catherine Kinsella: How did you become involved with the Canadian Lyme Disease Foundation, Janet?

Janet Sperling: Well, at the beginning, before I started my PhD, I thought, oh, I just need to, like, write a good paper. I need to go talk to the people in government, and I need to say, listen. These are where some of the big questions remain, and we’ll all just talk like adults. Everything’s fine. And I discovered it wasn’t that simple.

So I then contacted Jim Wilson, who’s the man who founded CanLyme, and I said, you know, hey, Jim. Can I give you a hand? And he said, yeah, I’d love that. So this is how I got involved. So I got involved with a lot of like the administration and the paperwork and the finances, And then when it became clear that nobody was doing the next gen sequencing, that’s when I decided I’d go back, do the next gen sequencing.

And Jim has done an incredible job over 20 years. Like, I think the whole of Canada just says, Wow, you know, that’s a really good job. And so it was time for Jim. I think he had other things he needed to do and he wanted to make sure since he’d set Can Line up so well, he was ready to kind of take a step back. And I thought I’ve just graduated.

I’m looking for new challenges, and I’d be happy to be the president and take the lead.

Sofia Osborne: That’s amazing. You’ve mentioned next gen sequencing a few times. Would you be able to talk a bit about what that is for listeners who might not have heard of it before?

Janet Sperling: Sure. So, basically, when we want to find out about the DNA of an organism, there’s different ways to do the sequencing. And, historically, we did Sanger sequencing, which was you take one pure set of DNA, and you find out everything there is to know about that DNA. But you can’t really do mixtures of things very well because it just gets too confusing. So fortunately, we came up with the next gen sequencing, which takes this really complicated DNA, you sequence it all, and then using the computer, so we call that bioinformatics, we pull it all apart again and we can tell you what was in complex DNA.

And this was actually one of the changes because up until, you know, fairly recently, you had to look at pure Lyme disease. So this is why people were saying, oh, we only have Lyme disease and we aren’t looking at the rest of the mixture in there. That’s because it was a technological limitation, and we don’t have that limitation anymore.

Catherine Kinsella: How have you seen the research around Lyme disease evolve in the past few decades?

Janet Sperling: Well, I think it first started off that a lot of people said, oh, god. Lyme disease. I don’t wanna get involved. But fortunately, we were able to get to a point where people there was a lot of money, and they said, oh, yeah, I want in because I want the money. But unfortunately, they discovered that even when you’ve got a lot of money, it’s a pretty complicated and political disease.

So I think we still have a long way to go. CanLyme has been funding research, and we’re really happy. We’re funding research very much from the point of view of the patient. So what does the patient care about? And as a patient, you don’t really care if it’s Lyme disease or something else.

It could be anything you wanna call it. You just wanna get better. And, of course, as a researcher, you say, oh, if I’m studying Lyme disease, I’m only gonna study Lyme disease. I don’t wanna get confused. And if you’re a doctor, you’re gonna say, if the patient has Lyme disease, I can treat the patient.

But if the patient has something and I don’t even know what it is, I can’t really justify giving antibiotics to somebody if I’m not sure of the diagnosis. So I think we’ve made a lot of progress in terms of surveillance, like finding out what’s inside the ticks, but realistically that was the easiest part, right, especially because we had the new technology. So I think we’ve done a pretty good job about figuring out what’s found inside the ticks. Now the problem is how are we going to get that applied to humans? Because we know humans are always way more complicated.

We don’t mind, as a as a person with CanLyme, maybe you had one tick bite and it was 20 years ago and you had Lyme disease, but you never really got sick. And then you got another tick bite 10 years ago and you got another tick bite just last week, and suddenly you’re sick. You don’t have to have all of the illnesses off a single tick bite. It could be multiple tick bites. They can be separated by time.

So it’s one of these things that, the more you look into it, the more complicated it is. But I can guarantee you with the technology we have, and some of that technology is just using computers and using all sorts of complicated statistics, we can start finding patterns for people and we can start saying this particular group of people will respond to the treatment for Lyme disease. So is it Lyme disease? Well, that’s actually not that important a question. The question is, did they get better?

And as long as they got better and as long as we can correctly identify the group of people who will get better, I think the exact diagnosis really takes a second priority.

Catherine Kinsella: A lot of Canadians have gone to the US to get treatment even though we have public health care here in Canada. What’s your perspective on why it’s so difficult for patients to be diagnosed and treated for Lyme disease in Canada?

Janet Sperling: Well, at this moment, I think one of the problems is we don’t have enough family doctors. So that’s a a problem we could fix pretty quickly. And some of the problem is that the family doctors are relying on what’s called the IDSA guidelines. So these are the Infectious Diseases Society of America guidelines. And that’s because we know family doctors can’t know everything there is to know about everything.

So they go and they look at the guidelines. And the guidelines are very prescriptive. So they’re saying, if this, then that. And they follow this little flowchart, and they say, okay, this person does or does not have Lyme disease. And even if they have Lyme disease, it’s very easy and straightforward to treat.

I just follow the guideline. But we know that the guideline is part of the problem, and an even bigger part of the problem is actually getting the diagnosis. So most family doctors don’t wanna make the diagnosis, partly because it’s it’s a difficult diagnosis, and partly because it’s a political diagnosis. And they know and this happens in BC. I don’t think there’s any MD openly treating Lyme disease anymore, that they kept getting called to task by the infectious disease doctors.

So it became something that family doctors would often say to their patients, I think you’ve got Lyme disease, but I can’t treat you because it’s just gonna cause too much grief. Why don’t you just skip over the border to Seattle, get the diagnosis, get the treatment, and get better? And so I think it’s become a political disease. We have made a little bit of progress but the American system is a little more dispersed, where in Canada it’s more you have one group and you have sort of group think. The idea is that only the IDSA knows about Lyme disease and people kind of got stuck in that.

And I honestly believe that the family doctors want to treat the patients. It’s just that they don’t have a good guideline to follow, and that’s part of the problem. If if they had a good guideline, the patients wouldn’t have to leave Canada.

Sofia Osborne: Yeah. And could you explain to our listeners your perspective on why this is such a political issue in Canada?

Janet Sperling: I think that mostly people, they just got overwhelmed. At the beginning, oddly enough, in 19 eighties, there were a fair number of family doctors who were treating Lyme disease. And it’s quite funny to talk to these people. And one of the things that they would say is there’s a lady in Calgary, and she’s pretty sure she got it in Alberta, But they moved to New Brunswick, and she went to the New Brunswick doctors and they said, oh, yeah. Yeah.

You’ve got it in Alberta. And she says, well, if that’s what it takes, and they treat her. But then she moves back to Alberta and then they say, oh, you got it in New Brunswick. And she goes, yeah. If that’s what you wanna hear, okay.

So I think some of it is that everybody just sort of thought, it’s not my problem. It’s somebody else’s problem. And we’ve created, I think, enough awareness to know now it’s everybody’s problem, it’s across the whole of Canada, and we need to help the patients. I think another example there is that the patients are moving. And certainly in Alberta, a lot of cases of Lyme disease are not from Alberta.

These are people who live in Alberta, but maybe they went to Ontario or maybe they went to Europe. They got Lyme disease there and then they came back. So it became a question of sort of hot potato, and it’s really complicated. It takes a long time to make the diagnosis, to feel confident you’ve made the diagnosis correctly. And it became something that people would sort of say, I I’ll go work on something that I know I can actually help somebody with.

Sofia Osborne: And are there any specific actions or changes you’d like to see in the way Lyme disease is addressed within the Canadian healthcare system?

Janet Sperling: Yeah. Absolutely. And I think that it is a very solvable problem. I don’t think it’s too difficult at all. I think we all need to sit down and discuss it.

And I think we all need to sit at the same table. We need to identify our biases. And for example, CANLIAM, we’re very transparent. Our bias is the patient. We’re representing the patient.

We’re going to go in there. We’re going to be persistent, and we’re gonna say, we’re gonna solve this problem because there are so many patients who are suffering so terribly. So that’s our bias. The infectious diseases people have a bias which sometimes they’re not willing to admit, and that is they’re terrified of antibiotic resistance. Now I’m very concerned too, to be honest.

I’m very worried about antibiotic resistance, but I do know that if we use antibiotics carefully, we can get the patients better and not risk the antibiotic supply. As a matter of fact, I think we risk it more by not treating the patients early and effectively. And then they end up, you know, going to other countries and getting antibiotics, you know, not through the regular system. So these are problems where we can discuss it. And then in addition, we have to have better research.

We have to have research that does actually include co infection, that multiply infected people do exist. And like I said, that can be something it doesn’t even have to be tick borne. We know that each individual is carrying around their own genetic scaffolding. So these are the sorts of genes that they carry themselves. They’re all exposed to different things over their lifetime, and so we know that sometimes people are super healthy and then suddenly they get bitten by a tick and they’re sick.

But I don’t think anything is insurmountable as long as we keep talking. And the problem right now is that our poor patients are basically sitting in quicksand, and the more they thrash, the worse it gets. And so CanLyme really wants to build a bridge over top of this quicksand and say, let’s all sit down and talk while we can because we really can solve this problem.

Sofia Osborne: One thing you mentioned early on in our interview when we talked about how you first started learning about Lyme disease was just the amount of conflicting and confusing information that’s out there, especially on the Internet about Lyme disease. What are some important considerations when helping people through their journey with Lyme disease?

Janet Sperling: Well, I think the first thing is remember that you know yourself best. So if you’re an otherwise healthy person and suddenly you’re sick and the doctor starts offering you these solutions that really don’t make sense, You need to stop and say, I know when I’m sick, and I know everybody knows, like, if you’re not feeling well for a couple of weeks and then, you know, you get better, that’s fine. Don’t worry about it. But we’re talking about people who are really, really sick. And if they tell me that they’re sick, the first thing I’m gonna do, I’m gonna believe them.

And then no one person has all the answers when it comes to Lyme disease. So you go to a doctor and maybe we often call them Lyme literate doctors, and maybe you don’t get better with that particular doctor. Ask for a second opinion because there’s so many different choices, and no there’s no one size fits all. So keep open to people who are gonna help, and then I I think honestly, do the best you can and then try to keep your mind open to new possibilities. It’s best if you can talk with other people who got better.

And one of the problems is that because it’s such a political disease, there are a lot of people in a lot of places and even throughout the various levels of government who got better, but they can’t say it publicly. So this is where it’s nice if you can find somebody who’s willing to tell tell you, remember, whatever worked for them doesn’t necessarily work for you. But there has to be a better way of connecting people so we can figure out what works best for most of the people most of the time.

Sofia Osborne: And you’ve mentioned some of the research that CanLyme is working on and the advocacy. Could you talk a bit more about some of the things that CanLyme is doing to improve the situation around Lyme disease in Canada?

Janet Sperling: Well, first of all, I would say awareness. And I think we’re doing a pretty good job, including this podcast. So we have the podcast. We have the website. We try to keep the website up to date.

You know, it’s usually sort of when a paper comes out within about 24 hours, we’re going to have it posted. So, we’re a pretty good resource for when you wanna find the peer reviewed literature. I would say that we’re always open to talking with the government. And anytime there’s an opening and they wanna talk to us, we’re happy to talk to them. Sometimes you’ll hear otherwise, but certainly based on my experience, we’re open to talking to people.

One of the things that we do is we support the doctors who would like to learn more about Lyme disease, And there’s a group of people called the International Lyme and Associated Diseases Society, and this is their particular interest. So we support doctors by giving educational grants for them to go and learn more from the people who have a lot of experience with not only Lyme disease, but the other tick borne illnesses that come along with Lyme disease. The research we try to focus these on the research that can be quickly applied to the humans. And that’s just because we have limited resources. So I would be happy to have blue sky research, but we realize that our funders can’t we just can’t sustain that.

So for example, do the tests that we use for Lyme disease, do they pick up all the different strains of Lyme disease in Canada? So we did sponsor some work with some mice, and now mice are not a good example compared directly to humans, but they can give us a ballpark. And the reason I say that mice aren’t a good choice is that mice are the natural host for Lyme disease, so they tolerate it. And the mouse generally won’t get sick. So when you start taking a mouse model and applying it to a human, we’ve already got a problem.

I mean, a human and a mouse are pretty close, but they tolerate Lyme disease and we don’t. So we have a special mouse, and so this is a highly selected mouse, which in some cases, they find there’s parts of the innate immune system that just aren’t working in that particular mouse. So we know they’re all just ballpark. But they do help us to understand, for example, does the human test work in a horse? Does it work for a dog?

I mean, we need to make sure that all of these testing the ways we identify Lyme disease, do they actually work in the real world here in Canada, not just in the East Coast of the US.

Sofia Osborne: You talked a bit about research that’s happening now. Is there any emerging research that you’re particularly excited about?

Janet Sperling: Well, I’m always excited about the research, so it’s it’s hard to choose one I I’m more excited about than the other. But I can say one that we just had published is about a child who had Lyme disease, and we know they had Lyme disease. It took a long time to get the diagnosis, and so there was a very an excellent paper that showed from the perspective of the parents and the child, how did they respond to that? So that’s one that we were able to fund because it was remarkably inexpensive research, and it makes you wonder why it wasn’t done before. So that’s one I think we’re very proud of.

And then we do have some research projects that are still in the offing, but because it’s preliminary research, I think it’s important we not highlight things that we think we see a pattern. But then when we actually get right down to it, we think, oh, dear. So until it’s past peer review, I don’t really feel comfortable highlighting any of that. But I I will say, go check out the genetics website, and you can start to see where people are submitting ticks that are positive for Lyme disease, and that helps you get a little bit of a feeling for, I have a high risk. At least I have a higher risk in Ontario than I do in Alberta, that kind of thing.

And I can say we’re trying to extend that.

Sofia Osborne: So there are lots of organizations working in this field. Why should people support CanLyme in particular?

Janet Sperling: CanLyme has a very broad number of people across the board. So we cover hardcore scientists and, you know, all sorts of other people, and I think we bring a very science based and open idea to the argument. So some groups get really kind of rigid in they’ll believe this, they’ll believe that. But I think CanLyme is the best at covering that middle ground. So I like to joke that we’re the Canadian Lyme Disease Foundation.

Like, we’re the middle ground. So you don’t have the two extremes. We are the middle ground, and we try to really kinda put the two pieces together, but we also openly say from the point of view of the patient. So we’re super science based, so we sympathize with both sides, And really, I think that when it comes down to it, our problem is we need to better communicate why we feel the way we do. Because I know that there’s many times people say, well, yes, but and I say, oh, I got a paper for you there.

I can show you that my idea is actually something worth following up on. So that’s where I think what we can offer is a much better way of communicating without the hostility. Like, we’re trying to drive down tension. Right now, there’s a lot of tension. The idea is they won’t talk to these people and these people won’t talk to those people, but we can talk to everybody.

And and I think we give a pretty balanced viewpoint, plus we have the advantage. We can admit if we’re wrong. Like, if we we say, you know, we looked into that and you’ve got a point. You know, we like to move on to your next point because we’re gonna accept that particular point.

Sofia Osborne: Is there anything else that you’d like to add or talk about?

Janet Sperling: Well, I’d just like to say thank you because I think this is something where communication is what’s been blocked and we need better communication. We need people to think about Lyme disease. When they go out for a walk, they need to say, you know, I think I’m going to tuck my socks my pants into my socks. I’m going to think about doing a tech check when I get back, and that kind of thing. So, just thank you very much because I think this is really important.

Sofia Osborne: Well, thank you so much for joining us. And, yeah, it was great to talk to you today, and to have you back on the podcast.

Janet Sperling: Well, thank you. It’s been a pleasure.

Catherine Kinsella: Was really interesting to hear Janet’s perspective, not only as an entomologist, but also as a researcher and as a parent. I like what you said about keeping an eye on the research, but also keeping focus on what patients need to get better and what it can be like for doctors who are trying to help their patients.

Sofia Osborne: Yeah. That seems like something that would be so important in such a complex field, both scientifically and politically. That was really what stood out to me, that there’s a lot going on both biologically and also just in the health care system, in the way that Lyme disease is sort of talked about, and in the political landscape around it too. So, yeah, just finding a way to kind of navigate all of that while still sticking to the science and advocating for the patient as well.

Catherine Kinsella: And even though there’s still so much we don’t know, there’s a lot of interesting research happening right now, which hopefully will lead to better testing and treatments for patients everywhere.

Sofia Osborne: And make sure to tune in next time as we engage with more experts from Canada and around the world.