038-Lyme Madness by Author and Psychotherapist Lori Dennis

And I posted something, I don't know, a couple weeks ago that I created that said Lyme sufferers are victimized 3 times: once by the disease, twice by the doctors who turn their backs, and a third time by family and friends who roll their eyes and walk away. I ended up— I ended up with 60,000 people that it reached. 60,000.

Congratulations, Lyme Fighter! Today you had the courage to open your eyes and face another day. Welcome to Lyme Voice. This show's purpose is to help you put the puzzle pieces of Lyme into place. Each episode is designed to inspire, educate, and encourage you on your Lyme journey to wellness. Together we will fight. Together we will heal. Together we will live. Here are your hosts, Aaron and Sarah Sanchez.

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Welcome, Lion Voice listeners, where fighting is a mindset, healing consists of choices, and living is the outcome. So glad you're all with us. We have a great episode with Lori Dennis, and as always, with me today is my beautiful wife Sarah.

Yay!

We are so glad you're here. Like I said, we have Lori Dennis today. We actually did this interview about a year and a half ago, but it was awesome.

Yeah, it was. It was so fun talking to her. She's got a a ton of energy and drive. And she is not only a psychotherapist and treats patients with Lyme, she also has a son, an adult son, who has been struggling for the last few years and has helped to create— to help him try to get better. So her perspective is just really unique and valuable.

Yeah, so you're— different times we'll talk about when the book is released. And just for your own information, you can get that book now on Amazon called Lime Madness. Lime Madness. And other retailers probably as well, but you definitely— it's on Amazon.

Yeah. And she also is on a documentary that's coming out soon called The Monster Inside Me, and they interview her, which is really fun.

That's right. I saw her on the trailer. Very cool. Well, speaking of books, we have our own release called Little Bite, Big Trouble.

Yes.

It is available on Amazon right now, 24 hours a day, 365 days a week, and you all should go buy one.

Yes.

Yeah. It's very cute.

The illustrator did an incredible job and it took, we've already said this, it took like 2 and a half years. It was ridiculous, but.

Labor of love.

It is out, a labor of love. I'm trying to forget the hours I spent on that.

Worth every second. I mean, it really is an amazing book. You guys are really gonna like it.

Yeah, there's just not a lot out on for children's books.

It is a children's book, but it is very therapeutic for the non-child, I hope. Yeah, I think even as an adult you will like it. It just puts— I don't know, I cried several times reading it the first few times I read it.

It's a kid's book, but you know, you're diving into deep topics, so Yeah, it's not sad. Also, we just did— just last weekend we did the premiere screening for the documentary we've been working on called Disappearing from Society, and it will be available June 1st. If you would like a copy, it's a short film, 20 minutes. Sign up for our newsletter and I will send it out as soon as I have it. But it was so fun. Everyone was there. Pretty much everyone was there from who was part of the cast, people who we interviewed. And so we just had a great time.

Yeah, it was probably 150 people about.

Yeah, it was perfect.

Yeah, it was so cool seeing this up on the big screen.

I know, it was really fun.

So that will be available for free to anybody who goes to linevoice.com. Go to the the sign-up page for that, or you can go to our contact page, send us an email stating you want to be added to our newsletter and that you want the video, and we'd be glad to send out this free documentary.

Welcome, Lyme Voice listeners! You are in for a real treat today. We have author Lori Dennis talking about her upcoming book, Lyme Madness, and you guys are going to be blessed in so many ways by listening to her. She comes at this book from both the perspective as a parent, but also a therapist and really gives voice to so much of the suffering and the loss that happens within the world of chronic Lyme. And so we are just thrilled to have her here. Laurie, thank you so much for being with us today.

Thank you for inviting me. I really appreciate it. I'm looking forward to this discussion.

Great. Laurie, are you ready to help us put the puzzle pieces of Lyme into place?

Absolutely. I will do my very best.

Awesome. All right, Laurie, you say in your upcoming book, where millions are suffering and few are listening. And one of the things we say here at Lyme Voice is that fighting is a mindset. Before we get into that, Laurie, give us give us the overview of your journey with chronic Lyme over the last couple of years.

Okay, well, our journey began actually in the fall of 2012, so it's been almost 4 years actually that my son has been ill. And like everybody else with chronic Lyme disease, you end up going from doctor to doctor, misdiagnosis to misdiagnosis. He lives in New York City, my son, and I'm here in Toronto. And together we, you know, had this initial journey of trying to figure out what was wrong with him, which in itself feels like a whole life. And then it took about 18 months, and after 18 months, 18 months of seeing about 20 doctors, he now tells me it was 30, but I'm gonna say it was a conservative 20 in New York City, specialist after specialist, not one of them, other than one doctor who actually had it on his radar to test him for Lyme, the test came back negative and he shelved it. So we shelved it as well, of course. But of all those doctors, not one of them, neurologists or any of them, thought about Lyme disease. So there's something occurred that in, you know, where my intuition brought me to this possibility. And when I started to Google Lyme disease, 18 months into his suffering, when he was really in the worst shape ever, there it was. Bingo. I knew that was it. So I got online. I found a Lyme literate doctor in New York City, and he happened to get in on a cancellation very quickly. And that became— that was the beginning of our journey of treating Lyme disease. But the journey started 18 months before that when he felt terribly ill. And it's been quite a journey, I have to say. And the reason I've written this book is because the journey is about so many things. It's about about not having the medical system paying attention. It's about a mother, in our case and in many people's cases, who has to figure it out for herself. Or, you know, along with my son, we've had to figure this out for ourselves and treat it and try to navigate this entire experience ourselves, even though there are some fantastic doctors out there who are on board, who are really knowledgeable. They're few and far between. And even with their help, you still have to be your own navigator and your own researcher and your own advocate. Microbiologist and your own physicist and your own diagnostician and your own everything. You've got to learn about, I don't know, 20 different disciplines that people go to school for for 20 years. We have— you've got to figure this out yourself.

Yeah. So we talk about fighting being a mindset, and in order to change your life, your circumstances, or your future, you have to begin by changing your mindset. Laurie, I'm going to read a quick quote and then I'll let you comment. You said, "I fell down the deep, dark rabbit hole of chronic Lyme disease sometime during the summer of 2014. My headlong descent was not by choice.

No awakening ever is." Yes, so that's the opening line, or those are the opening lines of my book that I haven't yet published but should be out in June. And that's precisely how this journey began. It felt like I had descended into this dark, deep abyss, which I'm calling a rabbit hole of research and misinformation and information that was over my head. And, you know, it just was the beginning of being shocked into this place, almost really like an alternative universe. And I still feel like we live in a different universe than the rest of the world because we have to confront, see, understand things that those who don't have Lyme or aren't in this world don't have to do. So that's what it's felt like for me. It's felt like being in this rabbit hole. Frankly, I'd like out, but I can't get out. I would really like out, but I haven't yet published the book. My son is not yet fully well, and I can't get out. So I'm still stuck in this dark, deep rabbit hole. But in that rabbit hole, I've also met some incredible people just like you who are really advocating for this disease and really trying to help everybody understand it. And it's really where I got all of my information for the most part, other than, you know, the books that I've read and a lot of interesting people that have really helped me to understand this disease and help us to navigate it and provide treatment protocols, or at least suggest treatment protocols that I might not have found otherwise. And by the way, that rabbit hole lives on Facebook.

Yeah, I know that's where it is.

It's on Facebook where there are probably, I'm going to guess, 200 Lyme Facebook groups, all people trying to support each other. You know, on my Lyme Madness page on Facebook, which I created a couple of months ago, one of the posts that I created said something like, Lyme disease is treated more humanely on Facebook than in most doctors' offices. Well, the response to that was huge because I hit a nerve. That's exactly what's going on here. So Lyme lives, breathes, and, and just exists on Facebook far more than in the medical system.

Yeah. So, Lori, take us back to a moment where you were awakened and you realized, I'm gonna have to fight in a capacity I never understood or I never imagined.

Yeah, because that—

um, go ahead.

Because that mindset, I think, is, is so important for survivors. And, and not just survivors, because I heard someone say the other day that To be a survivor, you— anyone can be a survivor. It means you still exist.

But you need to thrive.

Exactly. And I think that what is that fighting mindset that turned you from not just a survivor but to a thriver where you're not going to just accept it, but you're going to embrace it and deal with it.

Right. So for me, that, that thriving mindset really came out of the decision to write a book. And that's just my own journey. I mean, everybody's going to find it in their own way. But after having researched Lyme disease for as long as I did and reading things that were just mind-boggling to me that I couldn't even discuss with anybody in my world because they would roll their eyes or not understand or not— just not understand the depth of it. And, you know, no, in no way am I offending others by saying that. They couldn't possibly, because even I was feeling overwhelmed as if I had fallen into a rabbit hole with all of the requisite characters in Alice in Wonderland. And, and so I had to understand all of this. And in order to do that, my way of healing was to write about it and gather all of that research in a way that helped me to heal. And have I fully healed from this experience of writing this book? Absolutely not. But it did give me a focus, a way of taking positive action, a way of feeling more powerful than powerless. And I think that we all have to find that in our own way in order to not let the illness define us and make us powerless. I think that's when we really get into trouble.

Yeah, you know, as a picture, it just came into mind when you were talking there, Lori. You remember the book I see, or the movie? I can't remember the title. I See Dead People.

I certainly do. The Sixth Sense. Oh yes.

Yeah, so isn't it true that we see Lyme people?

Yes, we do. Yeah, you're right. And I often have to stop myself by saying, you know, it's only possible I may be, you know, coloring everybody with the same brush. So I have to be very careful not to say, "Oh, that's Lyme." And I do that and we all do that naturally because we're seeing things like you're saying that we have a sense, a Lyme sense that because we've been through such a journey and we're continuing on this journey and therefore we're hyper alert, hyper aware of what Lyme looks like. And even though we're not medical doctors, we know more than most medical doctors about this. Clearly, that's part of the madness. That is the madness. Yes, I agree. It's— I see Lyme people, and in fact, I do see people in my practice with Lyme who I've been able to help because I understand Lyme. And I think if they were in somebody else's office, they may have been focusing more on— as a therapist, other therapists may have been focusing more on their childhood trauma, which is an issue in people's mental health, of course. It's what I work with every day. But this is a bacterially driven neurological illness that creates all kinds of mood disorders, anxiety, depression, sleeplessness, all kinds of things that is not really going to be ameliorated by talking about childhood trauma. Yeah, well, and at least not as the first line of defense, right?

Which was one of my issues. I refused to take medication for so many years because they were all looped in with antidepressants and I—

behavior medication.

But hey, yeah, well, to help reduce pain levels, and I would just say I'm not depressed. I am in pain, which is therefore causing all of these issues. But I just held on to it for so many years because I thought if I cave and I let them label me depressed, they're going to do even less than what they're doing currently.

Yes. So I think it's a very common experience. Even in my son's case, you know, when we started to see all of these, this myriad of doctors, I think the first batch of doctors were in the mental health field because I was convinced and He wasn't fully convinced, but I was convinced that this was an anxiety disorder, given what I do for a living, given that anxiety comes honestly, he comes by it honestly in terms of family genetics. And because of his stage in life, he had just left university, he was in New York trying to establish himself. I thought this was an anxiety disorder. And he kept saying to me, yes, I'm anxious. Of course I'm anxious because I've got something going on in my brain that's making me feel dizzy and nauseous and woozy and headachy and feeling like I've got the flu 24/7. Today I likened it to, and you can tell me, but I liken the feeling of Lyme disease, and although it's different in everybody, it's kind of like having the flu combined with a panic attack 24/7. So it's like, because your, your nervous system is on overdrive, and so you feel like you're in this panicky state all the time. So while that is anxiety, it's not driven by emotional causes necessarily. It's driven by bacteria. It's driven by your nervous system being thwarted and being affected in a way that's dysfunctional. So I think it's complicated.

I'm so sorry if I'm interrupting you. I always have to slow down a little and I love everything you're saying. So one of the things that I experienced within the mental health community is that I felt like what they were telling me to do over and over again was to lower my expectations and to be happy with the fact that I could just care for myself or be happy with the fact that I could care for myself and my kids. But in no way were they helping me to want to move forward. They were just telling me, yeah, it's okay that your life is a complete disaster and has been ripped apart and your finances have changed. You should be happy that you aren't in a wheelchair. And I'm like, so yeah, I don't see that as a solution at all.

At all. Not— I understand, I do understand the concept, of course, of finding gratitude in what we have. Of course, that's a very strong and powerful tool. But that's kind of like a Band-Aid approach. I mean, really what needs to happen is we need to be able to grieve fully. And grief is a very difficult process that is necessary for healing. And when we grieve, and there's no time frame for grieving, it can go on forever, but, you know, it ebbs and flows. It's like waves, you know, it ebbs and flows. We also have to find ways to shift our mindset. Yes, to find some gratitude for what is, but we still have to grieve what isn't because there's so much loss in this. There's a loss of your health. Loss of your ability to function, the loss of your ability to be a mother the way you'd want to be, the loss of your ability to be a professional the way you might have once been. I mean, there's just so much loss in chronic illness, and there's even more loss in Lyme disease because you have so many people who you expect to help you who don't get it, who just don't get it. And I'm sorry, but that advice that they gave you was really very superficial and could not have been helpful.

Thank you for saying that, Laurie. And you know, one thing I realized just now as we're talking is we said this off the air, but I don't think we said this on the air for our listeners, is that you are a trained therapist. Is that not true?

Yes, I work as a registered psychotherapist in Toronto and I've been doing this for many years. And yes, so I— and I do see, as I've said, I see a couple of Lyme patients in my practice. Not— only one by design who knew that I was writing this book, but the other person came to me prior to even knowing she had Lyme. But in fact, she's actually had it her whole life, but her symptoms became acute a year into our working together, and I feel very grateful that I was able to help direct her, but really sad because she's suffering terribly. It's just— it's actually heartbreaking. Yes, I am a trained therapist, and it was never my intention to know this much about Lyme disease, which is why I say that no awakening is ever on purpose. It's not. It happens because you're forced into a position of of having to face something that's harder than you ever imagined, and it wakes you up. It wakes you up to learning how to live with chronic grief. It wakes you up to learning how to live with things that are so difficult and so chronically challenging, and learning how to live with the fact that you have to let go and you don't have control over things, and you can't decide how life should be. Life will often decide for you, and then you have to figure out how to face it. And that's, that's the healing mind. The healing mind is learning how to let go of expectations, learning how to be more accepting of what is, but that's easier said than done. There's no easy recipe for that at all. That's a process. Hmm. Yeah, it is.

That's really beautiful. I really like the way you said that. And I'm really excited to be able to talk to you, Lori, because we've often said we've wanted to talk to a therapist through the Lyme—

lens.

Lyme lens. Yeah, thank you.

You.

And right, so I'm really excited that we're able to talk to you. So as we're moving on, yeah, we talk about fighting, which we've talked a little bit about that. And as we move on, the healing process— healing is a choice.

Yeah, we talk about healing as a choice, and what we mean by that is healing is a journey that takes place on many different levels. And obviously if we could choose to be done with this journey, many of us would. So we're not saying it's that simple, but when you have suffered for so long, the healing process is very in-depth and it takes time and effort and emotional strength. So what were some of the breakthroughs for you all? And I want to commend you just on advocating for your child because so few people have that. And my parents didn't know how to advocate for me, but they came and helped raise my kids so that I could be my own advocate. And I'm very, very thankful for that. But a lot of people out there are, are very alone with the healing process. And like you said in the book, the do-it-yourself disease. Right. So tell us about some of your breakthroughs. Tell us about some of the modalities that have been helpful for your son. If there was physicians you saw that you would recommend.

Okay, this is— I could go on about this forever, so I'll try to keep it— I'll try to limit it to your time frame. But in terms of healing, I agree with you that healing is a very— it's a very personal journey, and I think it requires healing from the inside and out. Like, I do think that it requires a lot of emotional healing as well. So when I say that people don't necessarily need to talk about their childhood trauma when they have Lyme. Of course they do, because it all plays in together. I mean, everything's interconnected— who we are, how we were raised, our immune system, you know, whatever, whatever we were dealing with from childhood is still going to present itself and probably create the Lyme experience to some extent, if that makes sense. So I think that we have to really look at our emotional well-being, our paradigms, our, you know, worldviews, and our ideas about life and ourselves. We have to keep working on that so that we can learn how to be, you know, more, more self-compassionate. I think that's really important. So learning how to have expectations of ourselves that are reasonable under guise of chronic illness, because certainly you have to let go of things. You can't be who you once were. So there's a lot of work to be done on that healing front. And maybe it comes through daily meditation. Maybe it comes through that and exercise and talking to friends and talking to a therapist and reading about spiritual journeys. And, you know, one book that comes to mind for me that is a classic is Man's Search for Meaning by Viktor Frankl.

Oh, yes.

Right. So, you know, how did he get through the horrific experience of being in the Holocaust and being in concentration camps was by using his mindset and deciding at a very early point that they could take everything away from him, but they couldn't take away his thoughts. And that's the kind of work that I think a good therapist needs to do with people in every case, but certainly through chronic illness, because our thoughts are very powerful. And if we believe, if we truly believe, like on a very deep felt level that we're going to be okay, I think that's going to go a long way in helping us to be okay. And I don't think it's magic and I don't think it's, you know, necessarily easy to do that because clearly there are days where everybody wants to give up. You know, the suicide rate in Lyme disease is quite high because you've got so many things working against you and or even the ideation, suicidal ideation is quite high. So understandably, it's very hard to live with chronic illness. So I think we have to heal from that vantage point. And then when I say healing from the outside, I'm talking about modalities that, you know, and as you know, there are hundreds of them that people are trying. There isn't— people will say, so what do you do for Lyme disease? Well, isn't that the million-dollar question? Because there are so many different treatment protocols that exist out there. You kind of have to pick and choose and figure it out for yourself. That's not an easy journey in itself. You've— and you've got to be hyper-aware of what's doing what and what's helping and what isn't. And there's nobody there really guiding you. You're doing this on your own. So the things that have really helped my son, I think— I'm hoping, the jury's still out— after he finished antibiotic medication because his system just couldn't bear it anymore after 8 months, he started using the Rife machine. And he's been rifing since August. And as of this weekend, actually, we had an appointment with a doctor who specializes in low-level low-level laser, which I think is very interesting. And that's his new protocol amongst others, of course, you know, his diet's incredibly restricted, supplements, you know the drill, infrared saunas. There's so many things that you have to do to keep, to keep your health intact or to at least not backslide. But his new larger protocol is low-level laser, which is very, very interesting in terms of how that might get to you at a cellular level and help to restore your cellular being and, you know, help your immune system find a way back.

Now, are you talking about like the laser blood ozone therapy, or what exactly do you mean by that?

No, this is— I mean, I'm very happy to direct you to where you can read about it.

Awesome.

Do you want me to give you the name of the clinic that we went to? Is that— would that be helpful?

It would. People are always looking for a good clinic. It's so important to have a recommendation. People are always asking us, where's a good place to go?

And sure, so, so the reason this is interesting is because it's new to us as well in terms of being a potential protocol for Lyme. And while their main practice is not Lyme disease, they certainly have helped people with Lyme disease. So this clinic is called Meditech. It's in Etobicoke, Ontario. The doctor's name is Fred Kahn. We learned about it through a book by Dr. Norman Doidge, who's a Torontonian as well, and he's a medical doctor who has written a couple of books on neuroplasticity, how the brain heals itself. And he has a book called The Brain's Healing Way, the second book, and there's a chapter in there on low-level laser. And we were sort of led to that, as we're all led to things. And my son read that chapter and said, okay, I want to go see this guy. So we did on the weekend, and he's now working with him with specific protocols for his ailments, be it a leaky gut because of Lyme disease, you know, still the stiff neck, the brain fog. And he has his protocols now. He's rented this machine. He's taken it back to New York and he's going to be using that a few times a week. And we're hopeful that in 3 to 6 months, he'll start to see some significant changes. We're hopeful, but I can't tell you yet whether it's going to work. We can have a follow-up and I can talk about it with you. So that's just one new protocol that he has— he's taken on.

Laurie, you touched on something and I want to go back to it. You mentioned neuroplasticity, which is literally like one of my favorite things to study and read about. I have, I have two kids with attachment disorder, and so I've gone through a ton of training and understanding the brain and trauma and how it reforms. But for our listeners, tell us what happens to the mind when you are in chronic pain for years and years, because it's not just the physical symptoms, it literally retrains your nervous system. Can you explain some of that?

Well, I think you've just explained it really well. I mean, I think in layman's terms, that's, that's actually a good explanation that what happens is the brain starts to accommodate to the pain. And, you know, a very simple way of putting it is the brain starts to react to that pain, and it starts to do that on a regular basis and knows no difference. So it's almost like a holding pattern, and the brain kind of shuts down a little bit. Not that the brain doesn't function, but it shuts down a little bit to support that pain. To support you in that pain so that you're not having to feel it to that extent. And it does absolutely get affected by chronic illness and pain. Of course it does. I mean, listen, our brain is part of us. It's also what leads us. And if our brain isn't doing well and Lyme disease does infiltrate the brain and the nervous system, then we're not going to be doing well. So it's all very interactive. And neuroplasticity is this discovery which is not— which is pretty recent, actually, that the brain actually can heal. Heal. The brain actually is not static. The brain actually can move and be reshaped and reformed with, you know, neurons and dendrites and, and ways that are unimaginable, actually, that we're only learning now and starting to understand. Some of the books that I've read on that are Norman Doidge's book, The Brain That Heals Itself. There's a great book called The Woman Who Changed Her Brain by Barbara Arrowsmith-Young. There are a lot of interesting authors out there on that subject, and I think Again, and Daniel Amen, he's a wonderful advocate for how we understand the brain. He really has written a ton of books on how the brain operates and how we can heal the brain. And when we heal the brain, we heal because while all of our organs are necessary, it's our brain that's kind of the boss of us. It's kind of what we need to have working well in order for us to work well. So I'm a big fan of anybody who writes about and teaches about neuroplasticity because it also creates hope. It creates hope about people who've had brain damage. The doctor we went to in Etobicoke who specializes in laser therapy talked about the fact that concussions are a big part of his business because concussions can cause brain injury and imbalances in our brain. And let's face it, and he feels that low-level laser really helps with that, but let's face it, and I say this all the time in my practice, nobody's brain is absolutely perfectly balanced. It's just not— it's not the case. So I think that we can all benefit from understanding how to balance our brains so that we feel, you know, more or less mood dysregulation, so we feel more balanced, we feel calmer and more content. And certainly with Lyme disease, it's a bigger challenge for obvious reasons.

Yeah, it's interesting. My sister Stephanie was in a very bad car accident about 6 years ago and had bruising on 3 sides of her brain. And one of the things that's been interesting for us is we understand what each other is going through because neither of us— our brains don't work the same. And even though hers was a concussion and mine was Lyme, the effects are the same. We have issues with short-term memory and organizing, and it's the same. And that kind of seems to be the case.

And by the way, you know, people who don't have necessarily brain-specific brain damage or trauma but are born with certain wiring that we would probably categorize as ADD or ADHD, that's— those are the same cognitive issues that they struggle with, you know, to varying degrees. So again, not, you know, and some of us, some of us struggle with chronic anxiety or depression or— so I guess all I'm saying is that for the most part, most of us have some kind of imbalance that we're needing to always address in some way. Could be sleeplessness, you know, sleeplessness has got to do with brain function as well. And so I think that it's a really important topic that I also, as you do, find fascinating given my profession and just given my desire, my, you know, I'm so compelled to help my son get well that this is a lot of what we're trying to understand. And Lyme definitely affects the brain and the nervous system and many other organs as well, but you kind of You got to start somewhere.

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Now, Lori, from What I understand of your story, your son is the one with Lyme and you were the caretaker, and that's very similar to my story.

Yeah, I wouldn't say that I'm the— well, I wouldn't say I'm the caretaker. I'm the researcher and supporter. He doesn't— I don't live with him. So I don't— believe me, I've wanted to pick him up and bring him home on so many occasions. He's not a child. He's going to be 29. Like, he's not a kid and he's been working in New York for 7 years and sick for much of it. So I'm not the day-to-day caregiver, but I'm the one who is hyper-focused on this from the beginning, trying to first figure out what's wrong, then figure out how he's going to get supported, and then do all the research. And he does a lot of it as well. So we work really well together. I would call us research partners. That's what we are. And, you know, I find doctors, he finds doctors, we share ideas. And, you know, it's just— it's been an interesting dance. And we've actually done it really well together, I have to say. So I'm very— happy about that and we don't step on each other's toes. And, you know, I try very hard not to be overbearing, but there have been many times where I wanted him to try something, but he wasn't ready. So I had to hold back. And, you know, because this is his journey, this is his illness, not mine. But as his mother, it feels like it's mine. And I know that may sound codependent and it may sound like I'm, you know, a helicopter parent. I'm not. No. But when your kid is ill, yeah, you know, you just do. And he's not a kid, he's an adult. But when your, your son is not well and it's chronic and it's confounding and it's not— and you can't find answers, you just keep on searching. And that's the rabbit hole that we've been in, this, this constant search of trying to understand what this disease is. And I still don't have a full grasp, but I think I'm understanding it more, certainly more than I did, and why doctors aren't acknowledging it. And in Canada, by the way, you cannot find a doctor in this country— I know of one, only one— who will actually treat you with antibiotics beyond 28 days. So Canadians have to go to the US.

We know that because we get contacted almost weekly from people in Canada who either— like, we've been sent pictures. People are like sending us the picture of their kid's bullseye rash saying, "Where do I go?" And I'm like, "I have no idea." But when they, when they do ask you, again, in Canada, they can go to Vancouver because in Vancouver, naturopathic doctors have—

are licensed to prescribe antibiotics. So that's a province, one province, places that— where they can find medical help. But if they don't go to Vancouver, they're going to the U.S. because I know one doctor in Calgary who I interviewed for my book who is just a saint who does treat Lyme, who isn't afraid of the College, who isn't afraid of the ramifications, who handles it beautifully. But there have been doctors, as in the U.S., in Canada who have had their licenses taken away or who have been so harassed and bullied that they have given up their practice and their license and they're doing other things, still treating Lyme but outside of their— medical license.

Yeah.

So it's, it's, I mean, that's the other part of the story, and I'm sure you've covered that on many occasions, but the, the politics of Lyme disease, the medical politics, are as toxic, if not more toxic, than the disease itself.

Well, actually, and that's— we haven't covered that too much. Honestly, we have been a little hesitant to cover a lot of the controversy.

Oh, I understand why.

Yeah, because it is such a big And at the same time, we have to be careful even for ourselves. We're still recovering. And I say we because I'm much like you in that I don't have Lyme, but I'm the caretaker or the support system. And so to bring back to my original question about your position is I'm sure you experience loss as the caretaker. And I know that because I speak that from experience. I've experienced loss. I've experienced you know, trauma. So if I can get a little bit of free therapy since I have you on the phone here, can you give me some tips that kept you positive, that kept your mental state in a place that was willing to keep advocating for your son? And the reason that's so important is because so many relationships are falling apart and getting destroyed by this disease. So many marriages so many parent and kid relationships, siblings. I mean, it's just a horrible event. So I feel like this topic of keeping the caretaker mentally healed and healthy is a vital part to this whole story.

Well, and they call it compassion fatigue in a lot of the books.

It's—

and he has been dealt a heavy, heavy load because we have two decades worth of loss. But it is, it's—

It is compassion fatigue, absolutely, and research fatigue. And yeah, there's so much sadness and grief that the caregiver— and yes, I'm a caregiver, maybe not physically as I'm feeding him chicken soup, but I'm a caregiver because this is what I think about and worry about 24/7. And that's been the case for almost 4 years.

So kudos to you because that is so important, Lori. I really appreciate that your son has you to do that because so many people out there don't have an advocate like yourself.

No, they don't. In fact, I have somebody in my practice who doesn't have anybody in the world. I'm it. And it's kind of heartbreaking, I have to tell you. And it's hard enough to have one or two people supporting you, but when you have nobody, I actually don't know how people do survive without having that connection and that support system, because this is a really crazy-making disease in that there's so much negation and denial. And if you're being denied any kind of support, validation about your disease by the medical system, I do understand why it's so hard for family members to see this as a real thing, because if doctors are telling you that it's not, then of course your loved ones may be saying you're crazy, it's all in your head as well. So that's why this feeds on itself. The invalidation feeds on itself and it becomes a disaster. And I think that the first thing— I mean, one of the reasons I wanted to write this book, and I hope that it will have this impact, is to help people who aren't you and I, but people who have loved ones that are suffering from Lyme who aren't understanding it or believing it, maybe they'll read this book and think, oh, maybe I need to open my mind. Yes. Maybe I need to see that there— that this is real, that even though her doctor, his doctor is telling him or her they don't have Lyme disease, maybe that's just not true. And maybe I need to be doing some research and understanding this more. And, you know, I don't know if it will have that impact. I hope it does, because there wasn't a choice for me. I had no choice. I mean, this is my son, and he's a smart, effective, highly functioning, wonderful human being. And when he tells me he's sick, he's sick. And when he tells me that it's anxiety, but it's something in his brain, I take that very seriously. And so we have been on this journey together, and I've been trying very hard to help him. And how— you're asking how the caregiver copes. Well, you know, I think that I can't really prescribe I can't describe exactly how, but certainly as caregivers, we have to take care of ourselves because if we don't do that, then we're not any good to them whatsoever. So even when we're hyperfocused on our loved one's health, we have to also take some space to take care of ourselves, whatever that looks like, whether it's time away, exercise again, sleeping well. There are so many ways in which we have to practice self-care. That's the most important thing, and that's true for any caregiver. I actually stayed sane through this process is by continuing to research, write, publish this book, have my Facebook page, connect with people in the Lyme world all the time so I feel less alone because it's a very lonely journey, and continue to look for and research treatment protocols so that it continues to give us hope. So I personally, I keep grounded by taking action. And but the problem is you can't always take action. So when you can't take action, meaning do more research, find a protocol, you know, try to fix something when you can't do that, because there are many times when you can't. It's learning how to take a deep breath and take care of yourself and find a way to manage in those times of helplessness, because that's the really hard part. It's the helplessness and the powerlessness that can break you open. And trust me, I've been broken open many times on this journey, but then I find a way to pick myself up again and feel supported and get the support I need, whether it's on Facebook, by writing, by researching. And also when I get a message from my son that I got this morning saying he feels a touch better this morning. So that also helps. It's all very interconnected.

Well, thank you. Message received. I got my task for, for the next few days. So I mean, really, if I heard you correctly, when I'm feeling overwhelmed, I just need to stop and breathe and take care of myself.

Yes.

That's hard to do.

But It's really hard to do, but think about this cliché, which I think, you know, clichés exist for a reason because they have a lot of truth. So, you know, when you go on a plane and they tell you to put the mask on yourself before your child, there's a reason for that. And that's because if you're not breathing, they're not breathing. So that's the caregiver's mantra. You know, you've got to keep yourself oxygenated. You've got to keep yourself breathing because if you're not breathing, then no one's going to be breathing. So that's kind of a metaphor for how to be a healthy caregiver. And it's not easy. In no way am I suggesting that it's easy. And believe me, I've neglected my own health, my own sleep, my own everything. Believe me, I work out all the time. So it's not in any way easy, but it's necessary or we're not going to make it. We're not going to make it and we're not going to be helpful.

Yeah. And what's so devastating is you feel powerless in so many ways.

In so many areas.

For us especially, like, we have just spent a fortune. There is nothing left. We are starting over financially, but we have kids who are sick. And that's what we're— that's what is— this disease is so different from a lot of other chronic illnesses, but also like very similar to AIDS, where you're dealing with multiple generations in a family who need massive financial healthcare.

Yes, this is a very, very expensive disease because there's next to no coverage, right? Because treatment protocols are very expensive. Next, I mean, besides, you know, antibiotics, the food you buy and the infrared sauna that you need, and the— it goes on and on. So yeah, it's a very— I mean, I can't even— I haven't yet counted or added up how much we've spent, but I have a ballpark figure in my head, and it's lot of money. And that's— but that, you know, but we would spend anything to get well because health matters so much more. But yeah, when you're struggling, as the two of you are, with children with this as well— so there's three of you in your family— that's a lot that you're dealing with. I don't need to tell you that. You're living it every day. And it's got to be heartbreaking to watch your kids struggling, because I know it has been for me.

Yeah, it just creates more loss.

Yes, it does. It definitely does. I think the loss is, is so, is so far-reaching. It's the loss of dreams, the loss of potential opportunities, the loss of health, the loss of relationships because people don't get it, so they distance themselves, the loss of finances, the loss of relationships where people actually walk away, which I agree with you, Aaron, that's happened on many occasions where couples split up or parents don't want to know about it, or there are just so many losses. It's quite astounding in terms of how much one has to go through and how much— as if it's not enough to lose your health, you end up losing so much more in the interim. And I don't think people understand that. And that's true of every chronic illness, but Lyme is, is very particular because it's not a recognized disease. If you have cancer, people get it. They send you casseroles, they come to visit, they want to understand you may still not get the support you're looking for, but at least it's, it's a valid disease. With Lyme disease, they just don't get it. I mean, you're still hearing people calling it Lyme's. You're still hearing people say, well, where did he get bitten? Those questions are so irrelevant, and yet that's what people know. They just aren't educated the way we are. We've had no choice, and that's what I mean when I say that no awakening is ever a choice. None of us, you included, chose this. This is not a choice, but now we have no choice but to continue to understand it, research it, live it, learn, and help others along the way like you're doing. Yeah, we—

I always say it's an accidental journey. And one of the things I talk with, with my kids, I'm like, you know what, this isn't our fault. It wasn't my fault that I got bit, but it is my responsibility. And that's very difficult when you feel like you're being victimized on so many levels to say, okay, yes, I have been victimized in a lot of ways. Our life is completely different. But yet, it's still my responsibility to heal. It's still my responsibility to make good choices so I can help my kids heal.

Exactly. And that, and that this is our life, like whether we like it or not, this is our life. Sometimes we wish and pray that it would be different. Of course we do. But then we have to come back to reality, and this is our reality, and this is what we're facing. And it would be really helpful to have a support system, but that's really hard to find. You, you have each other, which is great. My husband's been very supportive, and my sister, and a couple of friends. But even they don't get it the way I get it because I'm the one who's so hyper-focused and hyper-researched and on it 24/7. That I can get very aggravated by the fact that nobody gets it the way I get it, but then I really can't expect them to. And, you know, you can understand too that people don't want to be in this world because it's painful. So who would want to choose to be in this world? And even those who love you don't want to be there because it's too hard. As human beings, we're programmed, we're hardwired to move away from pain, not toward pain. So why would they want to come into this painful world with us and really get it the way we do. That would be really too much to ask of anybody. So that's what makes it so lonely, and that's why we all connect in the Lyme world. I mean, I didn't think I'd ever be a member of the Lyme world, but I am because— and so are you— because you've had no choice. And frankly, I'm grateful for that because I do feel less alone when I'm able to connect with people who are experiencing the same thing as you are. And as we know, everybody's experience is is not the same. Yours is even more profound in the sense that there are 3 of you suffering, and that's— I can't even imagine. I can't even imagine what that feels like. And I'm sure that it's very easy for us to feel sorry for ourselves, and there are times when we do, and that's okay, but we have to figure out how to pick ourselves up again and keep moving forward. And the way I move forward is by reading and researching and looking for solutions and answers and trying to navigate this journey. And I'm better. I feel better when I can do that. But you can't always because sometimes there are no answers in the moment. You just have to live with it, take a deep breath and just accept what it is. Yeah.

So that's a great segue into the living portion of our show. And what we say here at LymeVoice is that living is an outcome. For so many with chronic illnesses, they're trying to learn to live again while still dealing with evasive and agonizing issues. So let's talk just about living and really specifically, even with you as a therapist, I want to talk about grief, but I want to talk about just the complexities of trying to heal and trying to live when you have severe limitations on your time and your energy and your mind. And for us, one of the things is there are days that physically I'm fine, but just mentally I'm foggy, or I'm very clear mentally, but my legs feel really weak, like I need to sit for that day. And so to combine, I feel like to have time, energy, and your mind all working together, which other people just have happen for them naturally, or I used to, it's so complex to kind of hash through the grief and the living, trying to live and get away from conditioned behaviors. When you're up against time, energy, and your mind every day.

Absolutely. I mean, I think what you're saying is that with chronic illness, expectations have to change. You have no choice but to change your expectations of yourself and your world and your life. And they do change because you're not given that choice. You know, I remember years ago, my husband— I mean, we've been together forever. It's been 36 years. I remember him saying to me when I was young, you know, life is not a dress rehearsal. And I got it, but now I really get it and what he was saying. And it's not his line. I'm sure he got it from somewhere. But what that means is that this is it and we don't get another chance or another choice. So we have to make the best of what is, and that might mean having to be on the couch for the day but reading a great book or watching a program that's entertaining or having a wonderful conversation with your child or, you know, really relishing in the moment of connection connection and feeding yourself in ways that are meaningful. And I think that's actually what life's about. Life's about creating meaning. And that's not always easy. And especially under these circumstances, it's really hard when our grief is getting in the way, when our sense of feeling sorry for ourselves and negativity, for good reason, are getting in the way. But we have to keep working at that and trying to see what's good in the moment and whether we can enjoy that meal or whether we can enjoy the sunshine. And that's where gratitude comes in. Is being able to stop for a moment, see what is good, take it in, really receive it, and get filled by it so that we're not wallowing in the negativity and the fear of this. Because honestly, it's the fear that kills us. And the fear is real, and the fear is, you know, understandable. And I don't think in any way we can judge anybody for being afraid of what's to come or what this looks like, but it's what we have to constantly work at and conquer because that's what gets in our way in life. And that's even when we're not chronically ill. I think fear is one of the— it's one of the greatest obstacles to living a good life, whether we're ill or not. Fear is one of those very big drivers that can take us in very difficult and negative directions, and that can be in the greatest of health. So I think that's what we have to take from this, is how to manage our fear and anxiety, how to live more in the moment. Easier said than done, but it's a practice. Taking in what is good and trying to focus on that, because our focus is everything. What we focus on is really what we create and what we become, and choosing what that is. Because when you say health is a choice, it's choosing to focus on what's going well, what we're doing well, what's working, as opposed to focusing entirely on what isn't working. Because if we do that, we're just going to be victims forever. And that's not going to work. That's going to be a terrible life.

Oh yeah, it's interesting. I knew people throughout the years as I'm dealing, you know, with neurological issues and fatigue issues, and I would see people get diagnosed with cancer and they'd go through chemo and they'd recover. And you had mentioned it, any chronic illness, any illness that continues for years and years has that. But I think it added to, uh, my shame or my guilt because I'm looking at people with who are fighting for their lives and I'm thinking they have a better quality of life than I do. Like, and I've been sick for years. And so it was just weird because I felt like for so much of my illness I was totally alone with it.

Yes.

Because people only saw glimpses, glimpses of it. And of course, like Aaron and my family saw more of it.

But yeah, but like the doctor said, you look good. So if you look good, you can't be feeling that bad. And they have no idea what's going on inside of you. My son describes it when he's not in a good place, he describes it as a storm inside of his body. It's like a storm going on. So everything feels, you know, wired and over— like an overdrive. And it just wreaks havoc and can wreak havoc in so many ways. And people don't see that. They don't physically see it. So then they see you looking good and they think you're okay, and appearances are deceiving, that's for sure. And yes, I think that while you may thankfully be surviving this and doing okay, that doesn't mean the quality of life is okay. And as we both know, unfortunately, people do die of Lyme disease despite what conventional medicine tells us, right? And it's, it's scary. So we've got to keep on top of it, and we have to constantly constantly be monitoring it. And I think you're right, it's incredibly lonely because people, unless they're living it, do not understand it. And that's not— that's not— I'm not saying that from a victim stance. That's just right. It's just a fact. And I think that makes it even harder because you feel so alone in this. And more than anything, I mean, I know this from my work and life and everything else, more than anything in life, what actually does heal us is validation from others so that we don't feel so alone. So if you have 1 or 2 people in your corner that say, oh, I see, I get it, okay, I'm hearing you, I understand, and really mean it, it's not feigned empathy but real, that goes a long way in terms of helping. And I think everybody deserves that and everybody needs that. And again, I'm hoping my book will resonate with some people and help them to open their minds and open their eyes and learn and research, because the last thing any Lyme sufferer wants is for people to ask stupid questions like, you know, have you seen the doctor? What did the doctor say? I mean, just things that are so typical for people to ask but are not helpful because Lyme sufferers are the experts on their disease, whether we want to be or not. Right. You're the expert on your own body and your own disease. And what the doctor says is actually immaterial. It's a whole paradigm shift in medicine where that's why Facebook is really the place where people go for Lyme disease. There's a whole paradigm shift happening. And I think Lyme is at the forefront of this where medical doctors have actually rendered themselves— I don't know, what do I want to say— rendered themselves not helpful. I'm trying to be kind here, but, but that's what they've done by negating a disease that is real and that is affecting, from what I understand, millions of people in 80 countries. 80 countries, every continent except Antarctica. I mean, how, how is it possible that people don't know that? But they don't. They just don't. And that they're negating it, that's a whole other story.

Yeah. And we get downloads from all over the world— China, Australia, Canada, US.

Wow.

Australia.

Not a lot in South America, but, um, everywhere else.

They're—

yeah, they're searching. People are searching for information.

Exactly. Because we have to be our own researchers. You asked me about the do-it-yourself disease idea, and that came from Chris Newby. Who's the executive producer, I think that's her title, of Under Our Skin, which is, as you know, the iconic documentary about Lyme disease that really has— really has done tremendous things to help people understand. Oh, I mean, I'm so in awe of that, what they've created or what they did create, and still has such resonance. But I— and I did speak— have the pleasure of speaking with her and interviewed her, and that's what she said. She said Lyme is a do-it-yourself disease, and I thought, oh my God, Bingo. That's perfect because you have to diagnose it yourself. You have to understand it yourself. You have to find treatment protocols yourself. You have to heal yourself. And yes, there are some amazing doctors out there. I'm not discounting them. There are, and we've met them and we're lucky and all the rest. But you still have to be on top of it yourself because you're dealing with symptoms on a daily basis that don't go away and the doctor can't see you 24/7. So you're constantly having to be the do-it-yourself person who's trying to figure out your body, how Lyme is affecting you, and how to ameliorate some of the symptoms. No doctor can actually do that for you, and conventional medical doctors will not do that for you. So it's a pretty big problem.

Lori, I really like your attitude towards Lyme and towards what you can do to help your son, even though you're separated by distance and circumstances. I think it's It's that fighting attitude. It's the healing attitude. And then that is just manifested into a life, into living. And part of that is not just healing yourself. I think there's so many people out there that are reaching outwards to see others. I mean, that is the basic drive behind our podcast is how can others escape what we've done? And I really appreciate your book and some of the topics. Even though I haven't had a chance to read it, I'm very much looking forward to it.

Yeah, and I really appreciate you having me on. This was a pleasure to speak with you because I feel like we're speaking the same language, and that's not always the case. And when you enter this Lyme world, you really aren't speaking the same language as the rest of the world anymore. And that has to do with so many different aspects of this, including the medical community, because we no longer see the medical community through the same lenses. That we once did. That makes it really hard. So I appreciate this, and I'm glad to have had an opportunity to talk about this. I hope it's helpful, and hopefully we can do this again at some other time.

I definitely think so, Lori. I think we just scratched the surface of some—

yeah, totally—

some of these topics here. And I do look forward to talking with you more about it and to see the spiritual, emotional side. Yes, of this disease is equally damaged. And again, it's one of those insult to injury because it's unseen, that people can't see the way your soul is being damaged through all this. And, and I think this topic is so important, and it is definitely one of the reasons that we created Lion Voices, to help people heal internally and heal spiritually from the massive disaster, like you called it, the storm, the perfect storm that just rips apart our lives like a horrible tornado.

Yes, as it rips apart your body. And I, I do love— I love the name of your show because you're 100% right. I think one of the things that does help people to heal is to have a voice. And in my book, I've actually offered the opportunity to at least a dozen people to have their stories in my book, which I'm so happy and grateful to have because I want it to also be a platform for not just our story, but to have other people be able to share their stories about Lyme and their journeys and what that looks like so that Because I think that the silence is really painful. The silence, the invisibility of it, the silence of it. I think when you ask about how do you heal, I think it's being seen. I think ultimately to be able to heal, we have to be seen and seen by people who have empathy and understanding, compassion, so we don't feel so alone because we are social beings. We're not meant to live in isolation and Lyme is very isolating. Yeah, so thank you very much for this opportunity. It was great to speak with both of you, and I hope we'll be able to have another segment at some point down the line.

Yeah, definitely. Again, thank you, Lori, for being with us. You guys, look up the show notes. We'll have all of her information on there and ways to get a hold of her, a way to get a hold of the book. And hopefully by the time this episode is released, she'll have a way to preorder on her website.

Thank Thank you again, and thank you for all the work you're doing, because honestly, it's so heartening to see that this is an effort that you're putting into this, and I'm sure you're helping a ton of people with the work you're doing. And giving people a voice is honestly one of the most healing things you can do, because everybody needs to be heard. Yeah.

Awesome.

Wishing your doctors could communicate and come up with a cohesive plan specific to your medical needs and genetics? At Invita Medical Center, they offer a team-style approach, giving you the opportunity to heal. In addition to a commitment of providing radical love and care for their patients, they are strategically located in sunny Arizona because Arizona offers the best integrative medical laws in the country. Call today to speak with one of their patient care coordinators. You can find them online at invita.com.

Disease is contrary to life. Therefore, wherever disease exists, life must also fight to exist.

Good job fighting, Lyme fighters. Keep it up. We'll see you next time.

Lion Voice contains general information about medical conditions and treatments. The information is not advice and should not be treated as such. 'Kay, Lincoln?

'Kay.

The medical information on Lion Voice is provided as is without any representations, warranties, expressed or implied. Okay?

Okay.

Lion Voice makes no representations or warranties in relation to the medical information on this podcast. You must not rely on the information on this podcast as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about your medical matter, you should consult your doctor or other professional healthcare provider. And for you, you consult your parents, okay?

Okay.

If you think you may be suffering from any medical condition, you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this podcast. Got it, Lincoln?

Got it.