Writing Lyme Disease: Ticks and You 

Mimi:
Shelly, thank you so much for coming on today. I’m super excited, and I have your book here. Your new book that just came out Lyme Disease, Ticks, and You: A Guide to Navigating Tick Bites, Lyme Disease, and other Tick-Borne Infections. So thank you so much for coming on. I appreciate it.

Shelly:
Thanks for having me. I appreciate the opportunity to chat with you today.

Mimi:
That’s great. I would love to start and talk about what made you decide to do a book and where you even find the energy to do the book?

Shelly:
So I was approached by Firefly Canada, a book publisher, to write this book. And I jumped at the opportunity because when I started this Lyme journey, obviously not by choice, I was shocked to realize how little support there is from our medical profession here in Canada, our publicly funded medical system. I very quickly found that I had to read the peer-reviewed scientific literature to help myself. I also reached out to other Lyme patients, Lyme sufferers, and those suffering from tick-borne illnesses for support and information.

BOOK IMAGE

As I started to understand the whole kind of Lyme and tick-borne illnesses story, I just realized that, as a research scientist, I had the good fortune of reading and understanding the peer-reviewed science of tick-borne diseases, but a lot of people can’t. As a science communicator and a scientist, I felt a little bit of a responsibility to take the knowledge I was gaining and find a way to share it with people.

Not everybody can access that scientific literature, that they can understand it. To kind of say, well, how can I take this and boil it down into essentially kind of a primer on Lyme disease and tick-borne illness, so that anybody unfortunate enough to get the disease or to have a tick bite has sort of, I hope, easily accessible information that can help them. I have unfortunately learned that we need to be our own strongest and most vocal advocates to get help. And so that’s why I wrote the book was to help other people with their Lyme journey and help them help themselves.

Mimi:
Yeah. I love the fact that in the book you talk about, which is not talked about, I just wrote a blog for my website about it in the past month, but how it’s congenital, you could be born with it, it could be sexually transmitted. Those topics aren’t discussed, and everyone thinks you have to be bit by a tick. And that’s just so not the case. And I love how you talk about it because these regular Western medicine doesn’t believe that that can happen.

Stigmas and Our Reaction to Tick-Borne Infections

Shelly:
I think you’ve raised a critical point, and I mentioned in the book, as well as even gender differences and how we react to infection of tick-borne illnesses and that sort of thing. And I think you’ve raised a crucial point because, as you say, people think, “Oh, okay, you’re bitten by a tick, and here’s how you get it.”

Shelly:
But unfortunately, our public healthcare system, at least in Canada, does not recognize either sexual transmission or maternal-fetal transmission as ways that you can get Lyme. And yet, there’s good evidence in the peer-reviewed scientific literature, as well as a lot of anecdotal information.

Shelly:
And the other thing that I really kind of draw upon as a scientist, I say, well, if our medical system doesn’t accept the peer-reviewed science that’s out there, what gets me is, I sort of turn to other microbes for comparison. One that’s often brought up in the kind of Lyme conversation is syphilis, which is also a spirochete bacterium, and it also has a persister form, and it’s sexually transmitted. And there are so many similarities between Borrelia bacteria that causes Lyme disease and the spirochete that causes syphilis, right.

Mimi:
So why wouldn’t it have the same kind of transmission because it’s in the same family? And it’s just crazy.

Shelly:
There’s no logic to it. And, I think that’s one of the frustrations that all of us with chronic Lyme have is there’s sort of common sense and logic and scientific precedent and direct information about Borrelia, and yet it gets ignored.

Mimi:
I think I know why it is, but why do you think that’s the case?

Shelly:
Gosh, that’s an insensitive, tricky question, and I think. Unfortunately, it boils down to essentially politics. And I think that’s part of why I have written this book and become such a vocal advocate for Lyme sufferers, not just for myself, but for all Lyme suffers because when peer-reviewed science, so science produced by experts in the fields, is being ignored by our medical professions, that’s concerning.

Shelly:
And I’m not trying to sort of open up a can of worms, but it’s a little bit like climate science denial, right? Climate change denial, where the world’s experts are producing peer-reviewed science on climate. And there’s a lot of people who still don’t believe that climate change is happening or that humans cause it. And that’s a whole other sort of discussion. Still, I think there’s a parallel in the sense that we have this vast body and very quickly growing body of scientific evidence, and yet the medical profession is ignoring it. And I find that shocking, to be honest.

Mimi:
No, it’s true. And then you also talk about in the book, which I think I’d love to talk about your personal experience, but also you mentioned it where molds and parasites kind of go hand in hand with Lyme. I’m dealing right now with mold with my son in college, and his dorm room is covered in mold.

Shelly:
Oh, dear. Yeah.

The Connection Between Lyme Disease and Mold

Mimi:
Does it have to be just black mold, or can it be the other form, as the white mold?

Shelly:
Oh, it can be a whole variety. And I actually, so can I empathize with your son, having done three science degrees and been a student for, I sort of joke 150 years sort of thing and being a student in both Canada and the U.S., I’ve lived in some pretty, not fantastic housing and mold is an issue, particularly in sort of student housing kind of situation.

Shelly:
And, I’m just going through a situation here at home where I had water damage in my house, and it destroyed my hardwood floors. And, when the floors were lifted…

Mimi:
It’s all underneath it.

Shelly:
It’s covered in black mold, which explains why, like a year ago, September of 2020. I started to get sick again. And I couldn’t understand why… [crosstalk 00:08:03].

Mimi:
That happened to us too in our house.

Shelly:
Oh, it’s terrible, but interestingly, the Lyme literate doctor that I sought help from in the fall of 2019, because he’s a Lyme expert, one of the first things he did was test me for molds, and I tested positive for four different mold infections.

Mimi:
Wow.

Shelly:
And what’s pretty frightening, so it wasn’t just the black mold. And at that point, I didn’t even know if the water damage was happening in my house back then. They suspected that I had picked up those mold infections over many years and lived in a whole variety of sorts of climates and housing situations. The mold infections were so bad that, as you probably know, one way to test for molds is the urine test. So they measure the levels of micro toxins in your urine. And for three of the four of them, I was in the 99th percentile, meaning my body was just wholly overloaded with micro toxins.

I was so sick in September of 2019 that my family doctor, I had seen her multiple times. And she was kind of at her wit’s end about how to help me. 
I sat in her office, and she looked at me, almost in tears, and said, “You are so sick. And I have no idea how to help you. Will you go to the emergency room?” She said, “I’ll call you an ambulance.”

I said, “Well, I just drove an hour to get here. So I think I can drive myself 20 minutes to the ER,” and of course, they didn’t help. But, yeah, it’s mold infections are serious, and a lot of the micro toxins from, not just the black molds as you mentioned, but other molds that we can pick up either through exposure, through the air, water, the food that we eat, contact on our skin. There’s a lot of ways that we can get those mold infections.

The micro toxin black mold produces such a potent immunosuppressor. So suppressing your immune function, the pharmaceutical industry isolates it and turns it into a drug to give to patients who’ve had organ transplants so that they won’t reject their organ.

Mimi:
Oh, wow.

Shelly:
These are the things that we’re picking up in the environment that are suppressing our immune system. And as you know, when our immune system is suppressed, it just opens the door for tick-borne illnesses that we have to go crazy. You can have a latent infection of Lyme bacteria were, and that was probably the case with me, is that I was likely infected when I was a child, but it only kind of made me sort of marginally ill for some 40, 45, 50 years kind of thing.

It wasn’t until that tick bite in 2019 that everything fell apart. Those mold infections, I think when they’re suppressing your immune system, makes it so much more challenging to deal with illnesses. And, I think many people with chronic Lyme don’t realize that mold can be a big part of the picture.

Mimi:
Do you recall what your doctor, obviously not your general practitioner when you went to find the more holistic, what they did to help you get rid of the mold, was it prescriptions, or did they have you do anything at home?

Shelly:
I would say primarily prescription drugs. So I was on a couple of prescriptions, and I had some chronic sinus infections and sinus issues. And so they said, “Well, that’s mold as well.” So I had prescription nasal sprays to take, and I also had some herbals.

A Multi-Pronged Approach and the Horowitz Checklist She Has in Lyme Disease: Ticks and You

Shelly:
So it was kind of a multi-pronged approach of both the botanicals and the prescription drugs. And, it’s a bit of a challenge because treating mold is not easy. And the drugs that they give you, the prescription drugs are actually pretty hard on your system and they can be really hard on your liver.

Shelly:
So, I had good doctor and he made sure that my liver enzymes were tested once a month just to make sure that nothing sort of bad was happening, while I was on the treatment. And it’s a long haul to get rid of the mold it’s not easy. And, the medications as you know, can make you Herx a lot, which makes you sicker. Which it’s a tough gig because you’re already really sick. And the fact that you’re taking medications that kill the microbes, but when the microbes die, they really endotoxins that make you sick. It’s a bit of a vicious circle.

Mimi:
Right. And then the other thing I want to talk about, what you discuss in your book is diagnosing Lyme, which is extremely difficult. And you talk about the Horowitz checklist, which I also I think have on my website too. Which is a great way of just kind of going through the symptoms, which a lot of the symptoms are also, I found out mold symptoms.

Mimi:
Can we discuss that? Like what you would recommend right now, if anyone’s listening, and they think they have Lyme and they haven’t been diagnosed, what route would you tell them to go? And which test would you tell them to do?

Shelly:
Yeah, a great question. And, unfortunately there’s no easy answer, partly because there’s so much variation from patient to patient in terms of how Lyme manifests. And if you have other co-infections that just makes it all the harder to treat, but also it increases the list of symptoms.

Shelly:
And as you said, mold infections, the symptoms of those overlap with tick-borne illnesses. So it can be really challenging, but I would say that one of the most important things, but also one of the hardest things, is to find a Lyme literate doctor. So somebody who’s an expert, who’s a medical doctor, but an expert on Lyme, who knows what to look for and understands the progression of these symptoms. And understands that tick-borne illnesses, these tick-borne diseases that we have, they result in a multi-system infectious disease syndrome.

Shelly:
And that’s why, Lyme and other tick-borne illnesses are considered the great imitators because the suite of symptoms is so broad and it overlaps with so many different things, but it’s because especially those of us with chronic Lyme, the presence of the bacteria, whether it’s Lyme and co-infections has done so much damage to our bodies, that it manifests itself in so many different ways.

Shelly:
And so, I think the Horowitz questionnaire is a really good one, especially for people who don’t yet have a diagnosis, to kind of do a little bit of their own detective work. In my case, and a lot of people like I speak to, they say, “Well, I just started to kind of not feel good. And then I felt like I’d burn out. And then I got really sick” and that’s kind of a really common theme, it seems, with tick-borne illnesses.

Shelly:
And so I think that Horowitz questionnaire is really good. One of the things that I mentioned in the book, and it was a friend of mine with Lyme disease who recommended this for me when I was first bitten, was she said, “Keep a diary, a daily symptoms diary.”

Shelly:
And that was really important, because that really helped me, first of all, understand what was happening to me and my body and how I was feeling. But it was also really important to present to my GP and to my Lyme literate doctor because symptoms can wax and wain. They come and go. And that just makes it all the more confusing for you as a patient when you don’t understand Lyme disease. I mean, most of us who have kind of been on this journey for quite a while, we now understand it, but when you’re first starting all of this and you don’t know how Lyme and tick-borne illnesses affect you, it can be pretty confusing.

Shelly:
So I think that that symptoms diary is important, not just for us, and because I think it also sort of helps us kind of validate that this isn’t an all in our head, which unfortunately is what most infectious disease doctors will tell us.

Shelly:
This is a very real illness with very real symptoms. And then, hopefully if you can find a Lyme literate doctor, which is my recommendation, it’s not always easy to find, but if you can find one, that symptom diary and that Horowitz questionnaire will be immensely helpful to them as well.

Shelly:
And then in terms of the testing, as I mentioned in the book, the two-tiered testing that we do here in Canada is abysmal. And if you have Lyme disease, depending on sort of what stage you’re in, in terms of whether it’s acute or chronic or whatever, there’s a meta analysis that’s analyzed. I can’t remember, I think it was about 11 or 17 different scientific studies out there that says if you have Lyme, the probability that that two tier testing will pick it up is a bit 54%.

Shelly:
So, a lot of us then go to private labs like IGeneX in California or Armin in Germany, that’s where I was tested. But the problem, at least here in Canada, is that our medical system will not accept the results of the testing.

Mimi:
And it’s so expensive, too.

Testing: A Must But Not The End All Be All

Shelly:
In my case, I think a really kind of important last point there is that I’ve been infected with Lyme and tick-borne illness for so many years that even with my Armin testing, my test came back negative. My CD57 was, was positive. But as my Lyme literate doctor explained to me, I no longer produce antibodies to Lyme disease. So when we use an antibody test to look for the presence of it, there’s no point.

Mimi:
So, yeah, that was what I was going to bring up, too, is that for people who are tight on funds, it’s not covered and it’s super expensive. Even if you go to an ILADS doctor, or every time I’ve been treated, they don’t even treat the Lyme. They treat that last. So it almost doesn’t even matter if you have the Lyme.

Mimi:
It’s like start peeling back, what’s going on with your mitochondria. If you do have the microtoxins and the mold or the parasites, get your gut working. Right.

Shelly:
Exactly.

Mimi:
All those things are going to help you fight that Lyme anyway. And I don’t personally, I’m not a doctor, but I don’t think Lyme goes away. I think it’s kind of like mono it kind of just subsides and it just kind of goes back dormant and your body’s able to kind of control it. So it’s getting your immune system, like your focus is how do I build my immune system up? Not how am I going to kill the Lyme? I think that’s a huge difference that people have to get their head around. I need to kill this Lyme. No, you need to get your immune system up. And how are you going to do that?

Shelly:
That’s a really excellent point, Mimi, because I think if you just had a tick bite, I would argue that your chances of killing the Lyme are high, if you can get a sufficient dose of antibiotics immediately, within a few days of a tick bite. That I think it’s no guarantee, but it maximizes your chance of killing that micro before it disseminates the rest of your body.

Shelly:
For those of us, like it took me seven weeks of conversations with my GP just to get my first dose of doxycyline. And that was way, way too late. But as I say, it’s likely I’ve had chronic Lyme for a long time anyways. But yeah, I think the unfortunate thing is that those of us with chronic Lyme, because science now tells us about the persister form of Lyme, that it’s unlikely that we’ll ever get rid of it.

Shelly:
And that in a way it becomes a little bit like cancer, where your goal becomes remission and trying to regain as much good health as possible. And, it’s certainly possible. I know people who sometimes it can take between two and 10 years, depending on how bad your infections are, how long you’ve had them, as you say, do you have mold infections?

Shelly:
My Lyme literate doctor said, “Look, we’re not even going to treat the Lyme until we treat the mold because it’s suppressing your immune system so much that we can give you antibiotics for Lyme disease, but your body’s not even going to be able to metabolize those antibiotics. And it’s not going to help you at this stage.” So they were really focused on killing the Lyme first and then building up my immune system and reducing the systemic inflammation.

Shelly:
And those I think are kind of the three main things, because I didn’t start on antibiotics until several months into my Lyme treatment. And I think the other thing, too, is getting back to your comment about the testing, when I was so ill in the fall of 2019, I was so desperate to get a positive Lyme test. And I think, I look back on that now, and I think it was just because every doctor I saw was saying, “You don’t have Lyme.”

Shelly:
I think it’s just, I’m not saying they do this intentionally, but they’re de-legitimizing your illness and basically telling you that you’re fine. And because all my blood tests, other blood tests came back normal and I’m like, “I’m sick.” And finally my GP sent me to the ER, because I was so sick and yet all my tests come back normal.

Shelly:
And so I think what I’ve sort of realized ,from my own experience and a piece of advice I would pass on to others is sure, do the testing, but don’t spend a bundle of money on it because ultimately, Lyme literate doctors know that the most important thing is doing a clinical diagnosis.

Shelly:
And I think that’s what we really need to focus on. And so many Lyme patients, especially those of us with chronic tick-borne illnesses, that we’re losing our retirement, we’re selling our houses to pay for treatment, to try to get regain our health and just be functional again. And I guess I would sort of argue yeah, test for Lyme, but don’t spend your retirement money and thousands and thousands of dollars trying to get a positive test, because we know that a negative test does not mean that you don’t have Lyme. In my case where I’m no longer producing antibodies to it. Yes, it’s a piece of information, but I think the most important thing is your symptoms and finding that Lyme literate doctor that can help you.

A Much Needed Focus on Lyme Disease By The Medical Community

Mimi:
No, it’s true. Well, Shelly, this has been amazing. Congratulations on your book. I’m very excited for you and thank you for doing this and thank you for your time. Is there anything else that we haven’t covered that you would like to cover?

Shelly:
Gosh, it’s such a broad topic, eh, but I think kind of the last thing that I would just like to end with, and I so appreciate your time and the invitation to speak with you. I really admire you for what you’re doing and I really appreciate that because I think all of us really need to advocate.

Shelly:
I think kind of my last comment is just about, I think we have a long way to go and we need to really, really force the issue with our medical systems here in North America to finally get our public medical systems to recognize, or to accept the peer-reviewed science of Lyme disease and other tick-borne illness. And to start taking it seriously, to accept that science, and then to start properly diagnosing and treating.

Shelly:
Because if we don’t, certainly here in Eastern Ontario, the incidence of, not just Lyme disease, but other illnesses like Bartonella, Babesia, Anaplasmosis is going crazy here this year. A lot of people are ending up in the hospital from it and doctors don’t even know how to diagnose it, let alone treat it.

Shelly:
And even Rocky Mountain Spotted Fever is here. And so, I think we really, really need to push our medical systems to take this very seriously because if they don’t, we’re going to have a large proportion of the population with devastating chronic illness, which has, not just massive implications for us personally, our lives, our futures, our families, but society in general. And the number of people likely to be on disability, the economic consequences. I mean, I think this is a disaster in the brewing, and I’ll be honest, it’s also a human rights issue. The fact that we’re denied treatment because of the illness that we have, that’s just wrong. And we’ve got to change that.

Mimi:
Yeah, definitely. We have to. And just otherwise it’s just the numbers just keep increasing every year. It’s very lonely.

Mimi:
To find Shelly, you can go to her Instagram page, which is biosphere.ed. So it’s B-I–O-S-P-H-E-R-E dot ed. And I will have that link below in the comments as well as also her link to her book on Amazon. And so thank you again so much, Shelly. I really appreciate it.

Shelly:
Well, thank you, so much, Mimi. I really, really do appreciate it and do take care.

Mimi:
Each week, I will bring you different voices from the wellness community so that they can share how they help their clients heal. You will come away with tips and strategies to help you get your life back. Thank you so much for coming on!


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