Episode 17: A Mother’s Journey – Rescuing a Son from Lyme Disease

Cindy Kennedy, FNP, is joined by registered psychotherapist and author Lori Dennis, who shares her journey of helping her adult son get well after he became ill with Lyme disease in the fall of 2012. While helping her son navigate his medical journey from “no answers” to continued recovery, Dennis determined to write a book to help others navigate the long and arduous path from illness to wellness.

Lori Dennis

Dennis, M.A., is a registered psychotherapist in private practice in Toronto and author of LYME MADNESS, named the No. 1 New Release in Immune System Health on Amazon. Ever since her adult son fell ill in the fall of 2012, her only focus has been to help him get well. Little did she know at the start of this medical odyssey just how deep and unending this rabbit hole would be. She was also determined to provide a platform for other Lyme sufferers to have their voices heard in an effort to end the madness. A madness where millions are suffering around the globe while mainstream medicine continues to turn its back on the sick and infirm. 

Dennis is a member of the College of Registered Psychotherapists of Ontario, the Ontario Society of Psychotherapists, and the Ontario Association of Consultants, Counsellors, Psychometrists and Psychotherapists. In her Talk Therapy practice, Dennis addresses a broad spectrum of mental health concerns. She also supports Lyme sufferers in her daily work. This year, she will be on a speaking tour bringing the realities of Lyme Madness to communities across North America. Her next project is to write and publish a handbook for her professional colleagues entitled The Lyme Literate Therapist. 

Transcript of Episode 17: A Mother’s Journey – Rescuing a Son from Lyme Disease

Cindy Kennedy: Hi everybody. This is Cindy Kennedy. You’re listening to another episode of Living with Lyme Disease and I’m real excited. I have a guest today who comes from Toronto, Ontario, Canada. Go Maple Leafs! I’m talking to Lori Dennis. Lori is a professional. She works as a psychotherapist, she’s an author, a wife, and most important she’s a mom. Her book is titled Lyme Madness. It’s both the best compilation of the exact history of why medical diagnosis and treatment of Lyme disease and co-infection is disgraceful. And she also has had the biggest fight of her life to get her son diagnosed and treated correctly.
This issue, as all of you probably know, but it certainly hits us quite hard at home. The issue is not just in the US, it’s global. So please help me from your sofas welcome Lori Dennis. Hi Lori.

Lori Dennis: Thank you. Hi Cindy. Thank you so much for having me today. It’s great to be able to have this conversation.

Cindy Kennedy: It’s overwhelming. We were just talking before the podcast about this whole issue with diagnosis, treatment, watch our loved ones suffer, or being the person that’s suffering, that it really causes a lot of issues. I have to ask you and I encourage everyone to use Lori’s book Lyme Madness as a wonderful resource. It’s very colorful. I need to ask you the picture on the front, how is that developed?

Lori Dennis: Right so-

Cindy Kennedy: How did it develop? Yeah.

Lori Dennis: So the picture on the cover of Lyme Madness is actually a portrait, a self-portrait that my son painted when he was only about 15 years old in high school. It’s not deconstructed as it is on the cover when it’s actually in its original form. It’s this really amazing likeness of him where he’s pulling out his hair because he’s stressed about exams. Little did he know or any of us know that we’d end up using it on a cover of a book about Lyme disease that he suffers from.

Cindy Kennedy: Oh.

Lori Dennis: So it was a lot of foreshadowing. And you know it’s-

Cindy Kennedy: Holy cow.

Lori Dennis: So he was 15 and now he’s 30. He probably began to get sick when I sort of pieced it all together at about 21.

Cindy Kennedy: Okay.

Lori Dennis: So yeah the picture was not, the painting was not created for the book but it ended up being used there because we both agreed that it was the right approach. And he was brave enough, I think, to be able to let me use it.

Cindy Kennedy: Wow.

Lori Dennis: And to be able to tell his story. I think it took a lot of courage on his part for sure and on everybody’s part when we speak out about this.

Cindy Kennedy: And I have one other question.

Lori Dennis: Mm-hmm (affirmative).

Cindy Kennedy: In your beginnings of chapters you talk, you have a little quote from Alice in Wonderful.

Lori Dennis: Yes.

Cindy Kennedy: “Going down the big rabbit hole” and many other ones. Why Alice in Wonderland?

Lori Dennis: Right. I mean that just came to me one day and I debated ’cause I certainly didn’t want it to be cheesy. I know that it can be overused. I really did debate whether that made sense but every time I would go back to that theme it just was the perfect theme for this. Because when we enter into the Lyme world we really are pushed into this rabbit hole and it is deep, and it is unending, and it is circular, and it is a place where you get lost and confused, and everything that was up is down, and everything that you thought was true is not true, and it’s just this very confusing new world that we have to start to learn about, just like Alice did when she fell down the rabbit hole. So I think that it really is very fitting for all of us who end up being plunged into that really deep hole of medical navigation and illness and trying to figure it all out with all of these messages coming at us that are often not true or often the opposite of what we believe to be. It really does take a huge paradigm shift to be able to live in this world.

Cindy Kennedy: It’s not a good place, you know? It’s certainly not a vacation-

Lori Dennis: No. No.

Cindy Kennedy: At all.

Lori Dennis: No. No.

Cindy Kennedy: I do wanna emphasis that of all the information that I’ve ever read or collected or tried to piece together you did an amazing job to discuss where the problems around this whole surrounding of these issues regarding medical treatment, medical care. Who knows what? Who doesn’t know what? Why people ignore it? So when people are listening to this and saying, “You know I’ve read piecemeal,” just get Lori’s book because it is exactly what you need to read.

Lori Dennis: Well I appreciate that. I mean really I was driven to write it for my own health and wellbeing and my son’s. Because when we entered into this Lyme world it was a really lonely place. And now a few years later I feel like I have this great community including you and others that I’ve met along the way so it’s not the same isolated experience. But when we first began it was so … overwhelming would be an understatement. It is so overwhelming in terms of trying to understand what’s going on. Not just with regard to the complexities of the disease itself, but certainly the complexities of the medical politics that we’re dealing with every single day.
And once we start to wrap our heads around that, as you know, the more you know the less you know so you start reading more and gathering more and gathering more. I felt that it was my job both for my own health and wellbeing and also hopefully to help others to take everything I have learned and try to distill it down and try to put it into some kind of reasonable, readable container so that people could sort of go along with us on our journey. And I hope, I really do hope, that the book helps people to at least shortcut their medical odyssey by a certain amount where we didn’t have that. I’m sure we had lots of people along the way that helped us but I’m hoping that as we all start to share everything that we’re experiencing other don’t have to be in the rabbit hole for quite as long.

Cindy Kennedy: Now-

Lori Dennis: Or alone.

Cindy Kennedy: It is. It’s lonely, it’s dark.

Lori Dennis: Yeah.

Cindy Kennedy: But the question is, as you are a professional and you do psychotherapy do you often suggest to your patients to journal?

Lori Dennis: Oh I do. Oh I think writing-

Cindy Kennedy: There you go.

Lori Dennis: Oh absolutely. I mean it isn’t for everybody, it’s one tool. But I know for myself, it’s always been a tool where I can work things out. Not even journaling, writing. It’s just always been the way that I process information and that’s not true for everybody. Other people might take a paintbrush of they might go for a run. We all do it in different ways.

Cindy Kennedy: Right.

Lori Dennis: But for me it just made sense. And one day I just made the decision. It took … I don’t know. It took a lot to get there because it felt kind of daunting but I knew I had to do it. So it just felt like a calling, something I absolutely had to do. And yes, it can be incredibly healing to write because it is a way to process what you’re experiencing and try to make sense of it.

Cindy Kennedy: Yeah. And I think that people listening need to think about that. They need to enter their feelings, their emotions, of course that’s the same thing but that’s okay, their symptoms, what they had maybe for dietary changes to see how that actually helps them. Now-

Lori Dennis: Mm-hmm (affirmative).

Cindy Kennedy: A lot of the issues surrounding Lyme disease I’m unfortunately familiar with but for our listeners let’s talk about what happened to your son. Give us some inside.

Lori Dennis: Sure. So when I look back on it from this vantage point, let’s say eight years later, when he was graduating university he did go to university in the states, his last semester was not okay. He was not himself. We chalked it up to stress because the market was really tough and he’d had a job offer and then it got rescinded and everybody else seemed to have their placements. It’s not an easy transition to go from undergrad to the working world. And it’s not that that’s always difficult for everybody but under the economic times that we were in I think it was just very stressful. So we just chalked up his, let’s call it his outsized anxiety and response to the stress and being all about that and other factors.
So then he kind of did have some symptoms but again we thought were disconnected or not connected including some hair loss and more anxiety. But then he kind of went along his merry way, got to New York City where he did land a job. And it was the fall, it was October of 2012, a week after he had a flu shot which at the time we didn’t really fully piece together but he had a flu shot and a week later he started to have a cascade of symptoms.
So it began with fainting in the gym, and then, if I can remember correctly, there was some dizziness and wooziness and more fainting and nausea, and then the symptoms just continued to grow and cascade. They’d wax and they’d wane and so some days would be better than others and then a new symptom might appear and then another one might disappear. And it was a very, very strange experience. We weren’t in a panic at the time but it was very upsetting, concerning. We started our medical odyssey at that point trying to figure out what was going on, chalking it up primarily to an anxiety disorder because that’s how it presented and we believed that that’s what was going on and it just made sense given that many people do suffer with that, given that that was how it presented itself we assumed that that’s what it was.
My son kept saying to me, “Yes, I’m anxious. Of course I’m anxious ’cause I don’t feel well but that’s not what’s triggering this. This is something more. There’s something going on actually in my brain.” And he keeps saying that and I didn’t quite understand. And then it took 18 months, 20 specialists in New York City, to not be able to diagnose it, to not give us answers as to what was ailing him. And then, I don’t know, in a moment of instinct or luck or whatever you wanna call it, Lyme disease came to mind for me. I certainly wish that had happened sooner. And I Googled it and boy did his symptoms match up and did his progression ever match up. That felt like a relief but a very scary and sad relief and then we went on our way and started to investigate what that means to treat Lyme disease and that’s when you get plunged into the rabbit hole because that’s a whole other world unto itself.

Cindy Kennedy: My question is the association between the flu vaccine and onset of symptoms, is that just like the perfect storm? He already had-

Lori Dennis: Right.

Cindy Kennedy: Stress and then you add an injection for an immunization and then that causes a cascade of immune response and underlying his immunity had already been compromised so do you-

Lori Dennis: You got it.

Cindy Kennedy: Is that how you see it happening?

Lori Dennis: Yes. That is how I see it. And I’m glad that you clarified that and I hoped that we would get to that because it is important for people to understand that I’m not suggesting that the flu shot was the cause of his chronic Lyme disease but I do believe it was the catalyst. He probably already had this in his system because when I look back before that he wasn’t himself. There were symptoms that didn’t really make sense but really for most of us we can only put it together in hindsight. We can’t put it together in the moment and we certainly don’t have a lot of doctors helping us put it together. So I think again, this is my theory and no doctor has, well I shouldn’t say no doctor, a few doctors have corroborated this but many won’t. But I do think the flu shot was sort of that tipping point, that catalyst that took his already compromised immune system and just opened up the flood gates because his system couldn’t handle it.
And it took a while to figure that one out. So I do think the flu shot definitely had its place in terms of making him this ill but it could have been something else. I think we all know in this Lyme world with all of our research and all the people that we speak to that it usually does take some kind of stressful event for this to really become acute. And it was can be anything from a car accident, a divorce, a flu vaccine that really takes it toll on your body. There’s lots of ways in which it can really tip over.

Cindy Kennedy: As a psychotherapist … did your gut say, “This might be some anxiety but it’s certainly not, that’s not the bottom line here.” Did you feel that way?

Lori Dennis: Well I did. I mean I certainly kept coming back to the idea that being outsized anxiety which needed to get treated because that’s what I do for a living, I see it all the time. I think we can all be prone to that. So I certainly kept coming back to that as the theory but my son very intelligently kept saying, “No. That’s not it. I understand that I’m anxious, of course I am. If you felt faint, if you felt sick and dizzy and achy and wobbly and couldn’t sleep, you would also feel anxious.” So I just listen, I always listen. And I trust him and so that’s what cause us to keep looking beyond that.
And apart from that we did go to see a psychiatrist because I thought he needed medication because his anxiety was so out of control and what a disaster that was. It was a complete disaster because often, and I’m not saying this is always the case, but certainly in his case these medications that he tried made him worse because my theory is that his nervous system was already on overdrive and it couldn’t take it. And this just made it worse. So it was a disaster.
And then we started to look into naturopathic ways to heal anxiety just as a starting point. Honestly I can’t even begin to count the number of doctors that he has seen over the last five years. It’s kind of countless at this point. Very difficult to even add them up.

Cindy Kennedy: That’s awful.

Lori Dennis: Yeah.

Cindy Kennedy: That’s awful.

Lori Dennis: And our story is not unique, as you know.

Cindy Kennedy: Yeah. It’s-

Lori Dennis: I never wanted anyone to think that I was writing a story of a unique story. I think our story mirrors that of most. But everybody’s experience can be different. There are always differences because this disease is so complex and not everybody has the same gene profile or the same emotional predispositions or personalities. There are so many factors that come into play and also when you might have gotten bitten and how and by what and co-infections. You know, how many things we have to take into account to understand somebody’s illness, especially when it comes to Lyme disease. It’s really complicated.

Cindy Kennedy: So as you’re going along here you started at that 18 month mark and when did he finally get a diagnosis?

Lori Dennis: So yeah so really he was just in crisis, real crisis. It was terrifying.

Cindy Kennedy: What do you mean?

Lori Dennis: I don’t even like to think back. Well-

Cindy Kennedy: What’s crisis?

Lori Dennis: Well he went from bad to worse where he’d at least been able to get to work on most days, he’d been able to somewhat function. He was at a point where he just really couldn’t function anymore. I just knew him well enough to know that, of course we were long distance, it was always by phone, but there were a few times that we made emergency visits to come down to see him because it was so awful. Where he couldn’t get off the couch and he was just so sick.
So crisis would have been we don’t know what to do now. We’ve sort of tapped out our resources. We don’t know who to go. We’ve seen every specialist possible in New York which is not exactly an unsophisticated medical community so you would think you’d find somebody who could figure this out. And we felt sort of tapped out of ideas. We didn’t know what to do next and he was getting worse not better. So that’s what crisis meant for us.

Cindy Kennedy: Okay.

Lori Dennis: It was an emotional and physical crisis and that’s when Lyme disease popped into my head for a number of reasons and so began our journey where I Googled it and I Googled Lyme doctors and we found somebody in New York who saw him fairly quickly. We got in on a cancellation and that was the beginning of his Lyme treatment and that was June 2014-

Cindy Kennedy: Wow.

Lori Dennis: Was when he began.

Cindy Kennedy: Yeah that’s several years, that’s what makes it hard because as some people are aware and others that aren’t you will be now, that Lyme just doesn’t stay floating around in your bloodstream. It burrows itself. It changes forms. It can affect organs, your heart, your bladder, certainly your joints, your muscles, and the worst is in your brain.

Lori Dennis: Exactly.

Cindy Kennedy: It’s hard to get the treatment to those areas and so it does rely a big part on your own immune system, rebuilding it and making it strong so it can fight this. So what was the beginning of his treatment?

Lori Dennis: So he did begin with oral antibiotics and pulse dosing and we were just learning all of this as we were going along. So we did that for six months. And then after that because his test came back positive again he chose to go on IV antibiotics which frankly I think was not a good decision because I think it made him worse not better.

Cindy Kennedy: Oh.

Lori Dennis: He couldn’t tolerate it for very long. So by the end of those four months, so that was probably ten in total, that was it in terms of mainstream medication. That was it. He’s not touched any mainstream medication, antibiotics or anything since then. Again, we were just new at this. We didn’t know. We thought we were in good hands, which we were at the time. I think it was the right place to start but we learned within about ten months that this particular doctor had sort of outlived his ability to help. And we had to keep searching and searching and searching and frankly that’s what it’s been for the last several years is just this constant search for ideas. And also understanding. Because when we first began I thought that Lyme disease was a bacterial infection. It’s not that. It begins that way but what it really is is an immunosuppressive disease.

Cindy Kennedy: Right.

Lori Dennis: And I know that you mentioned the immune system but that’s actually the crux of what keeps people so chronically ill with Lyme disease. So it begins with the transmission of spirochetes which, as you say, are very difficult to kill off and they change their forms and they burrow into every cell and bone and tissue in your body. It’s called multisystem disease because it affects everything from stem to stern. But more than that it really does detonate the immune system and create a death of B cells. And B cells are what we use to defend us in our immune system.

Cindy Kennedy: You have to tell people where your B cells come from ’cause you got the Bs and you got the Ts but they’re part of your white blood cells.

Lori Dennis: Mm-hmm (affirmative) and it’s really what we need to protect us. And so what happens is our body becomes this, or we have this floodgate of opportunistic infections and retroviruses like EBV which is mono and herpes virus and parasites and mold. It’s just we become a toxic mess because we don’t have the immune system being able to work or fight for our health. And so that’s why this is a chronic illness. And maybe it needs to be called something else, which is one of the debates amongst a million of them. And honestly when people are sick like this they don’t actually care what it’s called. Just figure it out and treat it.

Cindy Kennedy: Yeah. Yeah. Yeah.

Lori Dennis: And that’s what I’ve been fighting for a long time because the injustice of this disease, the medical injustice, is more than I can bear. And it’s not even for my son that I’m fighting anymore although of course that was the original impetus, but it’s because I’m witnessing and speaking to and seeing so much suffering that is just unconscionable and not being met in any way by mainstream medicine that is okay, just not at all. In fact for the most part doctors negate this illness. They deny it, they turn their backs, they even go so far as to call people crazy and say it’s all in their heads and send them to a psychiatrist for psych medications which are not going to heal this.

Cindy Kennedy: No.

Lori Dennis: And so the direction of mainstream medicine with regard to chronic Lyme disease is just completely fault. And that’s an understatement.

Cindy Kennedy: It is. It is. It’s sad. It’s unfortunate. And you’ve taken-

Lori Dennis: It’s actually tragic.

Cindy Kennedy: It’s tragic, yes.

Lori Dennis: It’s tragic.

Cindy Kennedy: You’ve taken something that was so close to your heart. Now some of the things that I think about as a mother is one, I would do anything to take away pain from my child. The other is that you’re only as happy as your least happiest child. And especially because he wasn’t under your roof and he was a distance away.

Lori Dennis: Mm-hmm (affirmative).

Cindy Kennedy: I’m getting gastritis right now just thinking about that. That is just so difficult. So you, as the long distance caregiver, I hope that you had good support to help you through this. Friends, family. Because a lot of people they don’t have that. People are just kind of think you’re crazy, just as the doctors think because they can’t wrap their head around this concept so that is a marvelous thing. And you taking all of this information and putting it into a book form and providing people not only the information as well as your journey, but just the story of how it happened to you because people can take from that and say, “Okay. This is where they took a detour. I wanna make sure that I continue on my path.” So tell me, how is your son feeling now?

Lori Dennis: He’s doing fairly well and I’m very grateful every single day. It’s never good enough. In other words, we always use a scale of one to ten. When he was at his worst he might have been a one or a two, maybe sometimes a three, being the absolute worst. But now I would say he hovers around a seven. Some days it’s a six, some days it might be an eight. So he’s definitely much improved but not good enough. And I don’t know where this is gonna go but he continues to try new protocols that we research and understand and using practitioners that we believe in because we hear great stories.
Again, it becomes this ongoing search. We never stop. We never stop thinking about what else can be done and how else could he really heal. I do want to hope and I do want to trust that it’s only going to get better but I do also know that’s not true for everybody and it doesn’t look the same in everybody and many people are, as you know, home-bound and wheelchair-bound, and bed-bound and on feeding tubes. People die from this disease and people die of their own hand because the suffering is too much to bear. So I know it’s a spectrum and I do feel very fortunate that he’s doing well and he holds down a very important job and he manages it but it never feels great and we want to get to great. You know?

Cindy Kennedy: Yeah. Yeah.

Lori Dennis: And I’m sure everybody wants to get to great, that’s obvious. And I hope that he’ll be able to get there.

Cindy Kennedy: I’m hoping in our lifetime. Now before we wrap up here, I love to play and I love to laugh so I got a couple questions for you.

Lori Dennis: Mm-hmm (affirmative).

Cindy Kennedy: So think about this now. What ticks you off?

Lori Dennis: What ticks me off? I’ll tell you what ticks me off. Medical ego. It light a fire under me like nothing lights a fire under me. So what I mean by that is doctors, and there are just too many of them, who are blind to this, who don’t listen, who don’t respect their patients, who listen to the propaganda that’s been fed to them, who don’t open their minds and their hearts to what’s in front of them and therefore turn their backs on people who are really sick.

Cindy Kennedy: Yeah.

Lori Dennis: And even worse, telling them that it’s all in their head.

Cindy Kennedy: Yeah.

Lori Dennis: That really ticks me off.

Cindy Kennedy: Yeah. That’s-

Lori Dennis: Really ticks me off because it’s a sick shaming thing to do. It’s not helpful. And it’s blaming the victim.

Cindy Kennedy: It is. It is.

Lori Dennis: Yeah.

Cindy Kennedy: So here’s-

Lori Dennis: So that ticks me off.

Cindy Kennedy: Alright, got it. I got it. I can feel it.

Lori Dennis: Yes.

Cindy Kennedy: You’re burning me through the-

Lori Dennis: Oh. Oh.

Cindy Kennedy: Headset here.

Lori Dennis: I’m out speaking and traveling and doing all because of that. That is my area of focus is trying to open up the minds and the hearts of doctors, which is not so easy to do, and to also, more important, validate people and help them know that they’re not crazy.

Cindy Kennedy: Exactly. So one more question.

Lori Dennis: Sure.

Cindy Kennedy: In life, sometimes we’re handed either a lemon or two or a bunch and your choice is either to be very sour or you can take it and make some lemonade. So my lemonade is meeting people like you and spreading the word and trying to give people more education so they can become their own advocate. What’s your lemonade?

Lori Dennis: Oh my lemonade was writing this book, which has led to a lot of advocacy work and speaking publically and writing blogs and meeting people like you and so many people in this community that are fantastic. And it’s just been absolutely turning lemons into lemonade and I’m very proud of that because I do think that it’s really easy to remain a victim. I mean I would never judge somebody for doing that because I think that we can all stay sort of curled up under our covers and not want to come out. But this takes a lot of energy and strength but it’s definitely worthwhile. And hopefully we help a lot of people as we go along.

Cindy Kennedy: That’s actually wonderful. So I do want to thank you. Everybody this has been Lori Dennis. She wrote the book Lyme Madness. And please get it, read it, learn. It’s extremely helpful and it’s so important to be knowledgeable. Again, Lori I want to thank you. And we’ll talk soon, okay?

Lori Dennis: Thank you Cindy. Thank you so much.

Cindy Kennedy: Okay. You’re welcome. Okay listeners, you’ve been listening to Living with Lyme, this is Cindy Kennedy. Please subscribe to the podcast so you can stay connected. And until next time God bless and godspeed.