Supporting Someone with Lyme Disease with Love, Hope, Lyme Author Fred Diamond

In this episode of What The Morgs? Podcast, host Britt Girvan sits down with Fred Diamond, host of the Love, Hope, Lyme Podcast and author of Love, Hope, Lyme, to discuss the often-overlooked challenges faced by families, caregivers, and loved ones of people living with chronic Lyme disease. Fred shares how a deeply personal experience led him into Lyme advocacy, what he's learned from interviewing hundreds of patients and experts, and why education, compassion, and community are essential for those navigating this complex illness together. Pasted text.txt

Topics Discussed

• Why Chronic Lyme Is So Often Misunderstood
Fred explains why Lyme disease is known as "the great pretender," the challenges of diagnosis, co-infections, and why so many patients struggle to receive appropriate care.

• Supporting Loved Ones Living with Lyme Disease
A conversation about how caregivers, spouses, friends, and family members can better understand invisible illness, provide meaningful support, and navigate the emotional impact of chronic disease together. 

• Finding Hope Through Advocacy, Research, and Community
Fred discusses the inspiration behind his book Love, Hope, Lyme, the growth of Lyme advocacy, promising developments in research, and why building community remains one of the most powerful tools for healing.

About What The Morgs? Podcast:

What The Morgs? is a podcast for people navigating Lyme and Morgellons disease. Hosted by Britt Girvan, the show is built on a mission to support, educate, and empower those affected—turning personal struggle into shared strength and purpose.

What The Morgs? Website: https://whatthemorgs.com/

Transcript

SPEAKER_01 0:00

Hi, I'm Britt Gervin, host of What the Morgux podcast, and I am so happy that you're here. This podcast is dedicated to raising awareness for both Lyme and Morgellan's disease. I promise to give you authentic conversation, lived experiences, and expert interviews with people in the medical community. I'm so grateful that you're here. Thank you so much for tuning in. Today I'm joined by Fred Diamond, host of Love Hope Lime podcast and author of Love Hope Lime.

SPEAKER_00 0:33

It's just a disease that's replete with challenges, with misunderstanding, with confusion by the medical profession, and unfortunately, people have to struggle through it. I've spoken to Lyme survivors who said the fatigue, you can't even describe the fatigue. And I've had people who've said they've been in bed for weeks, months. You know, they call Lyme the Great Pretender because it can represent 30 different symptoms. So most doctors are trained to treat symptoms, and that's where a lot of the problem comes in.

SPEAKER_01 1:06

Family members, caregivers are leaving their partners due to lack of information they really don't understand.

SPEAKER_00 1:14

It's a real disease. But first step is believe them. The reason why I'm doing this is just to try to bring some peace to a community that needs it.

SPEAKER_01 1:36

What family members, partners, and friends who love a chronic Lyme survivor need to know. Fred has dedicated himself to understanding what it truly means for those of us living with Lyme disease through interviewing community leaders, attending webinars, and engaging deeply with the Lyme community. He has become a compassionate advocate and important voice for those navigating this illness. Welcome to Wet the Morks Podcast. I'm truly honored to have you here. Thank you for being here today.

SPEAKER_00 2:15

Thanks, Brett. I'm excited.

SPEAKER_01 2:17

Yay. Okay, so if we could start off by just having you share a little bit about your background and then your own personal journey with Lyme disease. How did you come introduced to it and all the things?

SPEAKER_00 2:31

Absolutely. I'm based in Northern Virginia, right outside of Washington, D.C., although I'm actually doing today's interview in Silicon Valley because I'll be attending the Bay Area Lyme Foundation's annual gala tomorrow night. They do great work uh in the scientific research side for Lyme disease. Uh Dana Carvey is going to be the uh MC, so I'm excited for that. Yeah, and my good friend Jesse Rubin. Do you know Jesse at all?

SPEAKER_01 2:56

That sounds really familiar.

SPEAKER_00 2:58

He's a singer-songwriter, and uh he has Lyme disease.

SPEAKER_01 3:02

Yes, yes.

SPEAKER_00 3:03

And uh I've seen him perform in Virginia a couple of times, and I also saw him perform at the Lime Warrior 10th annual gala or 10th annual or 10th celebration, I should say, anniversary celebration. And he's an amazing singer songwriter. He's gonna be one of the uh feature pre uh pre uh uh performers tomorrow night. Yeah. So for your audience, uh a couple distinctions. One is I do not have Lyme disease. I had someone uh in my life very close to me who who probably had chronic Lyme disease, and uh five years ago, this this person decided to focus uh 100% on her recovery from chronic Lyme disease, and she chose to do that alone. So, in order to understand what people go through with chronic Lyme, uh spring of 2021, I went to the internet, I went to Facebook, and I typed in Lyme, and I was shocked to find a thousand groups, some with tens of thousands of members. Uh I Googled Lyme Warrior, for instance, and was shocked to find that there are dozens of advocacy organizations uh to help Lyme survivors, chronic Lyme survivors, uh figure out how to get treated, uh how to care for themselves, how to tell people, how to get tested. As you know, and you've already covered a couple of these topics on your on your great show, it's it's just such a complicated world. So uh in early 2022, and just that FOIA for your listeners from a business perspective, I run a global organization for sales leaders at companies like Amazon, Hilton, Microsoft, Oracle, etc. So in 2022, I wrote two books, and the genesis of my Lyme book, which you mentioned in the beginning, is when I was discovering Brit all of these things about chronic Lyme that I didn't know exist uh existed, I asked LymeDisease.org, which I call the CNN of the Lyme world, if I could write an article called How to Be Supportive When Your Partner Has Lyme. So in August of 2021, I wrote an article for LymeDisease.org. It got thousands of downloads, people started reaching out. So I always wanted to write a sales book. And then someone said to me, Fred, you should also expand that article you did for LymeDisease.org into a book. So on July 16th, 2022, I like to say I'm the only person in history who published a book on Lyme disease awareness and sales performance improvement on the same day. Amazing. Yep. And then started the Love Hope Line podcast. A couple of months after that, you were uh a great guest, um, close to a hundred guests. I post a show every Monday morning. Uh we've been doing it for God, it's over three years now. And uh I do a complimentary article for LymeDisease.org typically, and have gotten to know remarkably thousands of people who are Lyme disease survivors all over the world.

SPEAKER_01 6:06

Amazing. Amazing. Yeah, I mean I I can't even imagine publishing one book, let alone two. I I mean that's just that's incredible.

SPEAKER_00 6:18

Yeah, the Lime book it it it flowed. You know, I had done so much research and I I didn't know any of this. Um for twelve years, uh my plan was to keep a person uh as stress-free as possible and find out where the best gluten-free pizza was. And that was the extent of my that was pretty much the extent of my knowledge. I didn't realize that they were co-infections. You know, the average uh you know, deer tech can transmit up to two dozen coinfections, which and obviously things like Morgellins, which you know can be a result as we know. And also what's unbelievable about Lyme is that it could be the start of Alzheimer's and dementia. Of course, Alzheimer's is a is a sliver of of dementia. You know, other diseases, people are still we're still at the early, early stages of understanding uh the damage that ticks can do.

SPEAKER_01 7:11

It's true. Yeah, it's true. We just need more research, that's for sure. So when you think about um writing the book and you know, um just sort of your own journey, what was there anything like that kind of stuck out to you um as it relates to is there anything that surprised you? You know, whether it be you know the illness itself or just caregiving or how it affects us or can affect us so differently?

SPEAKER_00 7:39

Yeah, that's a great question. Um I I didn't, you know, it's funny, I say I knew one person with Lyme disease five years ago. And again, you and I are doing today's interview in in uh what's it, May? Is it 2026? You know, of course, Lyme Disease Awareness Month. And uh very very good timing for this. Uh yeah, I just thought Lyme was mostly about fatigue, um, you know, just just unbearable fatigue. And then I've learned, you know, they call Lyme the Great Pretender because it can represent 30 different symptoms. So most doctors are trained to treat symptoms, and that's where a lot of the problem comes in. Because a couple things I've learned. One is uh it's very quick how quickly the tick can transmit uh the bacteria and in some cases parasites as well into the body, how quickly it leaves the blood system, right? So that's why it's very difficult. You you can't really test blood. You know, there are companies looking to test your urine to see if there's uh you know remnants of the Lyme disease. And then since it shows up as so many different things, doctors will say, Oh, you have arthritis, or you have um a fever, or you have the flu, because it shows up as things like this joint pain, burning sensation. So unfortunately, Britt, the next thing you know, you'll have gone to see 15 doctors, right? Over a year, two years, sometimes a decade, finally it'll be and maybe even through that process, someone may say, Well, this might be Lyme disease. But the Lyme testing, the ability to test for chronic Lyme once it gets, you know, a couple weeks in is horrible. So it's just a disease that's replete with um with challenges, with misunderstanding, with uh confusion by the medical profession, and unfortunately, people have to struggle through it.

SPEAKER_01 9:32

They do. You know, it makes me think about you know, the role of a caregiver, and you know, I know that you're aware that a lot of caregivers in our community oftentimes struggle with the lack of, you know, they really want Western docs, right, approval and diagnostic tools. And there are lots of folks in the Lyme and Morgellan's community in particular, where a lot of family members, caregivers are leaving their partners due to lack of information. They really don't understand. I remember a woman on one of the Morgellan sites just saying, you know, my husband wants to take the kids, he doesn't believe anything that's happening, and everybody's offering solutions, but she's stating it has to be, you know, a Western dock. That is the only, you know, solution that he wants. So can you talk a little bit about how you don't like you have clarity? You like like you see the information. You know, and and granted, you chose to dive in and to inform yourself I can't speak for this individual. But you and I both know that that happens every day, all day.

SPEAKER_00 10:51

Yeah, absolutely. And it's interesting, when I wrote my book, um, I thought I was writing it for family members, partners, and friends who have a chronic Lyme survivor. What I've discovered is 95% of my audience, if you will, uh are chronic Lyme survivors, persistent Lyme survivors, who are either A, looking for more support or they're looking for ways to communicate that uh to their family members, partners, and friends, what type of support they need. And also uh a community. I mean, one thing that's arisen that I didn't know existed was the Lyme community. You know, when I typed in Lyme into Facebook, it was a thousand groups that occurred, some with, like I said, tens of thousands of members. Back to the relationship question. I remember when I published the book or when I published the article in LymeDisease.org, a lot of people just started reaching out to me and from all over the place, including people that were in my life that I had no idea had a tie to Lyme disease. Um I like to say that um I had a, well, I still have a daughter, of course, but a lot of a couple of her friends' mothers reached out to me because I started posting on Facebook primarily and LinkedIn for that matter, uh, things I had discovered, articles I had written, uh things I had discovered along the way. And people started reaching out to me that I knew personally, said, I don't know if you know, but I have had Lyme for 15 years and blah, blah, blah, and all the things that I've said. But, you know, if you type in Lyme disease, for example, does chronic Lyme exist still today? Again, we're doing this interview in May of 2026. You know, you could find remnants of, no, like the CDC, for example, Center for Disease Controls, cause it uh still calls it post-treatment Lyme disease syndrome. Their recommendation is 30 days of antibiotics, and if you still have some symptoms afterwards, uh they call it post-treatment Lyme disease syndrome. Now, the challenge there is, uh, this is what I've learned, is if you don't catch it within three weeks, perhaps, if you catch within three weeks of getting bit, and again, my my apologies if this is technically incorrect, but this is what I've heard from many, many people in the world, um, there's a good chance you'll get rid of most of the bacteria if you take a full stream of antibiotics within a couple weeks. And if you don't, you know, the bacteria, it's it's called a very stealthy bacteria. It's a very creative bacteria, it hides itself very well. It's a remarkable bacteria in the fact, and this is just the Lyme bacteria, the Borrelia Borgdorphy, uh, it doesn't want to be killed. You know, it doesn't want to be captured. So it hides itself very, very well. It's very stealthy, it's a very, very disciplined pathogen in that way. So back to the question about family members, partners, and friends, you know, Lyme is one of those things that uh you may look fine. You know, you may have like a bad weekend, but then, you know, maybe things look good. So you're wondering, well, how come you're not I know you were in bed all weekend, um, but now you're hiking. So do you really have this thing called Lyme that I just typed into the internet? And there are websites that say chronic Lyme disease doesn't exist. And uh, you know, it's interesting, someone reached out to me, and back to your question, estimated that they had estimated that 75% of committed relationships will terminate uh because of chronic Lyme disease. And 75. That was an estimate by an author of a book uh in the Lyme World. She remember she told me she goes, 75% will end and they believed 90% of the time it's the spouse or the partner who will say, You're not the person I married, uh, you're always sick, you're always in bed. Um I just typed into the internet and it doesn't say that it exists. You don't look sick, you know, those kinds of things. Uh and then, of course, unfortunately, when you're a chronic Lyme survivor and you're told time and time again that this thing doesn't exist, or we're not wrong, we're not sure what's wrong with you because Lyme testing is so abhorrent. Uh, you begin to question yourself. And as I've heard from hundreds of Lyme survivors, the 20th doctor that you see will say, gee, maybe it's in your head. Um, I'm gonna send you to this psychiatrist who can give you some narcotics that may help ease your pain. Uh, your listeners who have chronic Lyme know all these things, and it's just a world that's replete with challenge, which goes to um why I call my book Love Hope Lyme. I was originally gonna call it Love Loss Lyme, but alliteration aside, I had just spoken to so many people who've lost relationships, livelihood, friendships, and uh uh it's a community that understood loss and I wanted to to bring some hope.

SPEAKER_01 15:54

That's awesome. Yeah, one of the questions I was gonna ask you is like, what do you think that most, you know, people from the outside, you know, must misunderstand about how to comfort us and what we're going through. But I think you touched on it a little bit, just that like, you know, oftentimes, you know, it's it's invisible. You can't see it. One day we're hiking and you know, the next day we're not. For me, I don't have Lyme arthritis, you know, but a ton of my friends do, and they are completely compromised. Some are in wheelchairs, they can't walk more than a block. I've never had that, you know. For me, it's my cognition. But oftentimes, again, it just doesn't, it's not congruent, you know. But I also feel like, you know, the the society at large, we just there's such a lack of understanding and information. So a lot of it is just um, you know, sure, they could do in their own deep dive just like you chose to do, but that's a choice they have to make. But it's just oftentimes it's not congruent. I mean, even though in my own personal journey, I've pretended a lot to be feel way better. And and also sometimes, like I feel like when I am pretending, like, you know, I might get there, you know. I'm pretending to be that 95%. I'm only at 80%. But if I believe that I'm gonna make it to 95, I'm gonna do it. And and there's lots of brain gymnastics that I think we all do, but it's also quite depleting. And so oftentimes giving ourselves grace with just being where we're at on that given day is one of the greatest challenges I have had to learn. It is absolutely excruciating.

SPEAKER_00 17:46

Yeah. You know, if if human beings could learn how to give themselves grace, um, the world would be a much better place. But but that'd be a lot of things you just touched on. One of the things is uh we mentioned the coinfections before. So I remember I spoke to a I got uh I've gotten to know many Lyme doctors and people in the Lyme advocacy world. And I remember I had a conversation with one of the top Lyme doctors on the planet, and he said if it was just Lyme, Borelia Borgdurfe, uh Borgdurfe, the the standard Lyme, which most people have, um he said we probably would have figured most of this out by now, how to treat it, how to kill the bacteria, even though it's it's stealthy, like I mentioned. Then you throw in all these co-infections Barton Noah, Babesia, um, you know, uh, and a couple of these. And they all have to be yeah, they all have treated their own way. You know, I remember I I did a podcast, a Love Hope Lime podcast. Someone reached out and said, Fred, you should do, I wish you would do a show on what's called Lime Rage. And she said, I just go into these these bouts of of rage, and I want my boyfriend to understand what it is. So I found a line, I knew all these Lime doctors. I reached out to one, I said, you know, could you come on the show and talk about Lime Rage? And we did the show, and it's gotten hundreds of thousands of downloads uh because it's been repurposed by LimeDisease.org and other places. And I remember a couple people commented it's really Bart Noah rage. Technically, it's not Lime Rage. Okay, great. But the point being is that there's this co-infection that's causing all these things here. The other thing, too, is that um, you know, we talked about treatment before. Uh there's, you know, we use the analogy with when you break an ankle. When you break an ankle, every orthopedic surgeon in Sydney, Singapore, Shanghai, Saskatchewan, you know, uh Sydney, they're gonna do an x-ray. They're gonna say, Oh, there's the break right there. They're gonna put you in a boot, they're gonna tell you to take it easy for six weeks, do two weeks of uh rehab, and then you should be fine. You don't need to go to 20 doctors with your x-ray. You know, is this a break? The first doctor was gonna say, well, yeah, that that clearly shows the break. With Lyme, unfortunately, there's so many things. Again, the Great Pretender, like we talked about, the coinfections, it affects different people different ways. The other factor, too, is let's say you got bit 20 years ago. You know, the tick, you know, it's not a mosquito, it's not a bee, it's not a sting, it's a bite, but it's not like a bite, like you're getting bit by a dog or a cat. You know, the average tick is the size of a top of a pin, uh, they say a pinhead. So a lot of times it goes deep into private crevices, right? Or behind your neck or underneath your arm or or inside some of your private places. And let's say you you live by yourself, right? You know, you may not have someone looking at you and saying, you know, there's a tick. We got to get it taken out and checked real quick. So some people estimate that only 20% of the people might have seen uh what they call the bullseye rash or the M rash. Um but most people don't. And then, like I said, it's uh it might not be for a couple weeks until you start getting some symptoms. Or you may get the symptoms like we talked about, some joint pain. Uh I have people I've spoken to who have had horrible neurological Lyme symptoms, and I have others who have said they've had none. It's all been the arthritis or the soreness or the fatigue. Uh and for for people who are listening who are caregivers, family, or friends, uh, you know, when someone without Lyme has a tough day, yeah, you get home, you sit on the couch, crack open a beer, watch the game, and maybe you know, binge on friends or something like that. Uh, and then you fall asleep and you wake up the next day refreshed, ready to go. Uh, I've spoken to Lyme survivors who said the fatigue, you can't even describe the fatigue. And I've had people who've said they've been in bed for weeks, months. Yes. I I had a friend who I met through the Lyme world. Uh and six months after we connected, she said, I'm not sure if you know, but I've been bedridden for the last six years. And I had no idea because she was active on social media. Et cetera. So back to to the caregivers, it's not just, gee, maybe you should rest today. You know, there's so many other complications that I've seen, and it's even a struggle for the Lyme survivors to even begin, which is one reason why there's so many Facebooks. And I know people were attracted to, you know, this new podcast that you've decided to do, which I applaud you on. And uh, you know, people were just looking for people who understand and can support them.

SPEAKER_01 22:26

I just keep thinking of caregivers, family members, and support people. And you know, what was it about you that, you know, why did you choose to dive in? You know, obviously that's just the fabric of who you are as a human being. It's just um, you know, but it resonated with you. It connected. You kept going, you wrote a book, you continue to advocate. And um, you know, and and and you know, it it's just how can we connect with those people out there that um their families are really struggling to to hear them, to see them, to acknowledge them. I just, you know, I'm just listening to you and I'm like, how can I how can we translate this? Because you and I both know so many people are suffering.

SPEAKER_00 23:25

I've met people around the world, Britt. You know, the first entity that reviewed my book, Love Help Lime, in summer of 2022 was the Lyme Disease Association of Australia. Right? And uh I've met people, I've traveled around the United States uh signing books, and I've I gave away, I still do, I give away the PDF of my book for free. I've done that from day one. Um I'm not a doctor, I don't sell supplements. Yeah, you know. Uh I just first to answer your first question and then quickly address it. Uh I just cared for a particular person a lot. And it was a shocking thing when all of this just literally kind of came out of the blue, and then I just went out, so I started studying. And I'm one of those people who I like to go down the rabbit holes, and I was shocked. You know, again, I was involved with a with a person for well over a decade, and none of this even appeared. And then I started like typing into law into Facebook groups and seeing a hundred comment conversations and continuing to see the same theme. And then ask having people ask me questions that I've seen addressed years ago. I'll give you an example of how of how um uh this disease is so much different than others. Uh I live again in Northern Virginia and I I go to a lot of business networking events, and uh I went to an event, and to be honest with you, not infrequently, uh the conversation will go to Lyme at some point because it's just you know something I'm so passionate about helping people find peace with. And I was at a networking event, I don't know, six months ago, and someone said, Oh, Lisa has Lyme disease. And I was like, Oh, so they brought Lisa over, and you know, I introduced myself and she said she's had Lyme disease, she believes, for at least 10 years. And I was like, Oh, I said, Who is your LLMD, Lyme Literate Medical Doctor? She said, She said, What's that? And I'm like, Well, that's it's a doctor that's devoted some time to learn more about the disease and how to treat it properly. She said, Oh, I've been going to my GP for the last 10 years, general practitioner. And I was like, Oh. And I said, Well, what are some of the coinfections that you're also struggling with? And she said, What are you what are you talking about? What's a co-infection? Oh, wow. I'm like, oh, sweetheart.

unknown 25:53

Oh.

SPEAKER_00 25:53

I was like, you know, the the average, you know, deer tick and black-legged deer tick can transmit um a couple dozen what's called coinfections, which I'm gonna guess you probably have. And the the reason I bring this up is even someone who knew that they had Lyme disease for 10 years was getting treated by a GP, and I no disrespect to GPs. She said this GP was doing the best she could. She was giving her probably antibiotics. Yeah. And as you know, there's a lot of other ways people are now treating herbals, of course, and other approaches. You know, it's interesting on my Love Hope Line podcast, one out of, I don't know, five or six shows, we talk about mindfulness type things. You know, getting your mindset into the place where you can heal. You know, uh I know you and I have talked about regulating. The one thing I've I've learned tons, obviously. The one common theme that has hit me like a rock is if you don't regulate your central nervous system, then you're you're never going to heal. You're always gonna be battling, you're gonna be struggling, etc. So if you can first get to there, which is hard, but then you can get to a place where you can start to heal. But I remember this was someone who knew they had Lyme and didn't know what the doctor was called, didn't know about the co-infections. And she obviously had a couple co-infections from some of the symptoms. So, you know, like I said, it's not just like breaking your ankle aware to you, there's the break, getting the cast. Maybe one out of a hundred people need surgery, you know, who knows? But with Lyme, there's complications, there's the like we talked about when it gets into the mental side. So back to family members, partners, and friends, there's a lot to, you know, the Lyme survivors don't even know. And they can't even explain certain things that they're going through. And they might be experiencing things, but they might be wrong about why it's happening, right? And then back to Western medicine, then you may have doctors who who know what they know. You know, can I tell one other quick little medical thing?

SPEAKER_01 27:56

No, I love and I love that you shared that story too, because first of all, that was just a few years ago, correct?

SPEAKER_00 28:03

That was months ago.

SPEAKER_01 28:05

And that is quite shocking in that, especially I mean, unless you live in a silo, literally. I mean, the amount of media coverage that the tick population, the epidemic proportions is being shared on media is really interesting that there yeah, I'm just there's a disconnect. But but what I'm thinking is you and I both know that there are other people out there doing the same thing. If there's that one individual, there are there are hundreds of thousands more people staying in that lane and not understanding how complex this illness is.

SPEAKER_00 28:48

Well, you know, like we said before, you mentioned this before. Most of us grow up with Western medicine, and you you have a pain or you have a fever, whatever it is, you treat it with a pill. And that you go to the doctor, and the doctor says, Oh, it looks like you have this. Here's how we treat it. Take two of these and call me in the morning, type of a thing. And I'm not here to slam Western medicine. I've met a lot of very committed, loving, passionate uh medical practitioners who want to help their patients, but this is this is unique in its complexity. And the other thing, too, um, I I've met a lot of people who say to me, I'm gonna go, I found a new doctor. Um, I need a LLMD, Lyme Literate Medical Doctor in Kansas or Texas, whatever it might be. And they find one, I tell them the doctor is only as smart as they know and what you tell them. I tell people, before you go see your new doctor, write down everything. Write down all of your history so that the doctor is not making his or her first assessment. You know, there they have more info. Um and as professionals, they'll go back and forth and ask for clarification. But I tell people, and this is again, you know, again the broken ankle thing. How'd you break your ankle? Oh, I I I tripped on a trail. Oh, okay. They don't need to ask you 15 questions. Oh, was the trail this big? Was it wide? When was the trail invented? You know, tell me about your mother, you know. Boom, there's the break. We're gonna put you in a cast. With Lyme, there's some cases genetic things come to play. You know, your ability, your ability to destroy the bacteria. It's it's so complex, Britt.

SPEAKER_01 30:29

Yeah, yeah. Like, for example, I have the MTHFR gene mutation. And there's a perfect example of how that is not something that I would want with, you know, my chronic illnesses. It's just not. I have to work at it for the rest of my life. And in in even just, you know, um, yeah, I mean, when I think about chronic illness and how little I knew prior to my own personal diagnosis, just, you know, I know for me it's shifted my perspective on what chronic illness is and just how I see and feel for anyone with any chronic illness. I would imagine it's probably shifted your perspective significantly as well.

SPEAKER_00 31:20

Yeah, absolutely. I mean, um I you know, there's that expression that when you have your health, you can do a million things, and when you don't have your health, you can only think of one thing. And so true. Yeah, it's so true. And um I remember I I spoke to a a Lyme survivor um, I don't know, maybe six, nine months ago, whatever. And this person said to me that they've been struggling with pain, right, for most of their Lyme journey. And this person said that they went to a Lyme literate medical doctor and they had to meet with their uh nurse practitioner. And the nurse practitioner said, Maybe you just need to learn how to live with the pain. And it's heartbreaking. You know, and the person said, I I I don't want pain. And and just another little twist here, um Lyme literate medical doctors are are in demand, they can charge a lot of money, insurance doesn't cover the um uh when it gets into the chronic stage after you know the first couple of weeks, if you will. So back to the spouse question is we gotta spend 15,000 bucks for this? Um well, I guess we're not gonna send our kids to college now because of your disease. And I tell people, too, you didn't smoke four packs of cigarettes a day, you know, you didn't jump out of airplanes, you know, you didn't do reckless things, you were walking in Central Park. You know, you were gardening in your backyard. A lot of one of the myths, a lot of people think, oh, Lyme disease, it's even today in 2026, oh, it's a mid-Atlantic or a New England thing up in Connecticut, um uh, et cetera. You know, I've spoken to a lot of people all over the place. I've done book signings in Texas. The Yozarks are a horrible place for dicks. I've met people in San Diego and Los Angeles. Uh again, I'm going to the Bay Area Foundation event. There's uh people in Oregon, et cetera. So, you know, people also say, oh, well, we don't have Lyme disease here. You know, you go to a doctor in North Carolina. Well, yeah, you do. So there's still so much mythology. There is a lot of good things being discussed, but there's still so many um things that aren't uh people aren't educated about.

SPEAKER_01 33:39

Has there been any podcast interview or interaction that you've had out there that um maybe was surprising or um maybe, you know, an impactful story? You know, what was the most impactful story? That might be two kind of different ones, because honestly, this world of well, Lyme and Morjellons is quite surprising, to say the least.

SPEAKER_00 34:06

Yeah, you know, there's been I've done close to a hundred episodes and I've spoken to so many people. Um this wasn't on the podcast, but I met with a family um who I know, who lives near me. Uh and I knew that you know that there was lime in their family, but I didn't know the details of the lime that was in their family. And I had dinner with them, I don't know, maybe six months six months ago. It was probably maybe four to five months in the uh late winter of of 2022. Uh what years it now? 2026. And I'm still dating my checks, 1986. No, but I remember so I met with the the husband was a friend of mine through business. I met with the husband and the wife and one of their children. And the child was 21 years old. And the child, who's now a man, uh, was telling me about how his youth was riddled with suicidal thoughts and anxiety, and how he constantly thought about killing himself because he had this thing that he was unaware of. And this was a successful family in, you know, a very nice part of town, very high energy, very high-performing parents. And then they told me what their family had gone through. And I kind of knew them. They weren't close, close, but I kind of knew of the family. And this young man is telling me about his childhood, how he would have to sleep with his mother every night because he was afraid of this disease and the ticks and stuff, etc., and how they tried everything, and how they tried rife machines, and they tried exotic drugs, and how they tried the typical antibiotic approach, and all the herbals, you know, the unit protocol, and the counterprofession survivors. But this this young man was telling me about um his his life, and it was heartbreaking. And Britt, I've spoken to so many people who have similar stories. You know, they say that the number one cause of death in the tick-borne world is suicide, right? And I one of I'll share the story. One of the things that really triggered me to write the book, and again, I just dove in to understand what had happened to a particular person in my life, and I wrote the article, like I mentioned, and in winter of 2022, I was writing both books. And again, I wrote a book for sales leaders, which is uh very popular, and I was writing the Line book, and I remember I said to myself, this was like March of 2022 when I published the book, July of 2022. And I said to myself, do I really need to publish this book? Again, I don't have Lyme. Are people gonna believe me? Am I doing this just for me? Whatever. I was on a Facebook group, one of the ones that has tens of thousands of members, and somebody posted, and I remember her Facebook name was Chell's Peace. Uh Chell's Peace. And she posted, I've had enough. Can someone please PM me about how to take my own life? And people, of course, wrote back, sweetheart, don't do it. Please call me, PM me, please don't do it, yada yada. But I remember I took a screenshot of that and I kind of kept it if I ever needed like a little boost. Uh and I published my book, July of 2022. In October of 2022, someone posted on probably the same group, does anybody remember Chell's Peace? She killed herself this weekend. She had a four-year-old and a two-year-old. And people with broken ankles ain't sitting around with suicidal tendencies. They might be bummed that they're not playing basketball or going for a hike. And this isn't one isolated thing. I've spoken to so many people, and it's because they've tried everything, right? You know, there's a lot of people who say, is there a cure? I'm cured. Well, there's probably some pathogens still in your body. Hopefully, you'll be in what's called remission for the rest of your life. Yeah. But it's it really is, you know, a ridiculous disease, and and I applaud you for stepping out, you know, doing something that you never thought you were going to do. You've had some great conversations already on your show. I'm I'm very honored to be here and to discuss this. And it's um it's just a disease, and what the mission, the reason why I'm doing this is just to try to bring peace, um, some peace to a community that needs it.

SPEAKER_01 38:36

Well, we thank you immensely. Um yeah. Um I um okay, so when I'm sitting here listening to you and I'm thinking about, you know, maybe newly diagnosed people. So from your perspective, what are maybe some practical steps that you would maybe offer to their friends or family and how to support them. What is like maybe some of the first steps that you might recommend for family or caregivers?

SPEAKER_00 39:11

Yeah, well, obviously, buy my book, listen to any episode of the Love Hope Lime podcast. And a lot of times just listening to a show will give you some information that you need. You know, one thing that I've learned from Lyme Survivors is uh they just want people to know. You know, again, like we've talked about a number of times on the show, Bret, it's it's so complicated that there may be days where you just want to lay on the couch and you just I've spoken to people, like I said, who've been in bed for for weeks, and there are days that you you may want assistance. Um one of the common things that I've gotten from people is for the family members, partners, and friends, maybe maybe not friends, but you know, family members or partners, is to kind of know and get educated on the treatment protocol that they're going through. You know, understand, maybe go to the doctor with them, uh, you know, to listen. And again, it's it's I've learned this as well. When you're the one with Lyme, it's all about the recovery from the Lyme. If you're a family, partner, friend, it's about supporting your partner when you're supporting them. Uh so be a little more educated on what the what the doctor is telling them. Definitely go to a Lyme literate medical doctor. Uh, and not all of them are great, but they at least have a knowledge and understanding of where you might be and where you're going through. The other thing for family members, partners, and friends to understand is uh, and Lyme survivors, uh, it's it's not a take a pill in the morning and or take a pill at night and call me in the morning because you're gonna be fine. You know, I've seen people who have said on various social media groups, hey, has anyone tried this? And then somebody replies, Yes, it saved my life. Then the next person replies, I tried it for a weekend, did nothing. Then someone says, Well, you need to do it for six months. Six months is a long time when you have this disease that's causing you all this anxiety and everything related to it. You know, one of the other things for family members, partners, and friends is to understand that your loved one is probably struggling with a lot of stress and guilt at the fact that they can't work because they went to college and they have a master's degree, and they might have been a high-performing executive at one point. Uh, you know, for people, one of the great shows I did, I become friendly with a woman named Colonel Nicole Malikowski.

SPEAKER_01 41:40

I know who she is. Yeah.

SPEAKER_00 41:41

Yeah, she's an amazing human being.

SPEAKER_01 41:42

She's amazing.

SPEAKER_00 41:44

She is a she was a Thunderer, the first woman Thunderbird jet pilot. And she came down with Lyme disease and it medically retired her. And if you want to talk about a high performer who was taken down by Lyme, now she's also become a world-renowned speaker uh on overcoming adversity and is a uh just a huge, uh unbelievable advocate uh for support. But try to take an interest. Um it that's really what's needed is and believe them. I remember when I did my first show, I had Dr. Richard Harwitz, who's written a number of books. He's probably the preeminent Lyme literate medical doctor. He's a new book coming out on everything related to chronic illness. And I interviewed him and I said, What do people need to know? And he said, believe them. It's a real disease. Ticks do this. Uh I'm still searching for a value for ticks. Um, I know that chickens eat them, opossums supposedly may eat.

SPEAKER_01 42:41

Oh, yeah.

SPEAKER_00 42:41

There ain't too many that are again. I'm still trying to find a value for ticks because of all the trouble that they've they've caused. But first step is believe them.

SPEAKER_01 42:50

Yeah, I agree. Um, so earlier you mentioned hope a little bit as it relates to Lyme. Since you've entered the Lyme world, and we're now in May of 2026. What gives you hope in the space of Lyme? Maybe as it relates to treatment research or patient support and care? Interestingly enough, obviously you're going to the gala tomorrow evening, so I'm sure you'll have the most current, really interesting um updates. But I also know that you're you're super informed, so you probably um have some ideas of some exciting things that might be in our future.

SPEAKER_00 43:31

Yeah, there's a lot, there's a lot of good things going on. Um I do want to give a statistic for your listeners. Uh approximately $50 billion is spent on cancer research per year. For Lyme, it's close to approaching $300 million. You know, to have the Health and Human Services and Department of Defense do things, and for more research for diagnostics, treatment, and for for mental health care. There's a couple of organizations. Organizations with very passionate, committed people. Again, I mentioned Bay Area Lime Foundation, Global Lime Alliance, Project Lime, LimeDisease.org, Center for Lyme Action. There's a lot of pockets of people doing things. For example, and a lot of great people who have done a lot of great work in the Lyme world. There's a lot of things going on. One of the things that is a challenge is there's no global entity like the American Cancer Society or the American Um Heart Association, where it's like the central place where billions are being thrown into it. Again, the Steve and Alexandra Cohen Foundation is doing a lot of great work. He's uh the owner of the New York Mets, you know, a billionaire whose family was touched with Lyme. So he's put a lot of money into uh universities that are doing research. So you see things happening at like Northwestern University, George Mason, uh North Carolina MIT Tufts. So there's things uh happening uh at places. So and there's much more awareness now. Uh you know, Justin Timberlake last summer said that he had Lyme disease. Uh the TV actor Christopher Maloney from the Law and Order franchises, uh his family was touched by Lyme. So he's done a number of things to help spread awareness. Um I hate to say it though, if you have chronic Lyme, all this stuff is gee, that's interesting and great, as you're lying on the couch during Memorial Day. But at the same time, though, um people who have been in this world for decades have said that there's a lot of new drug type things happening, new diagnostics happening. And understanding, an understanding of how it affects the body has has grown significantly as well. Um also ties to things like I mentioned before, to dementia and MS and other types of diseases. So there seems to be more and more people, I've been told, who are involved in uncovering things that people need to know.

SPEAKER_01 46:28

Yeah, that's kind of what I'm discovering as I mean, obviously I've been at this for two and a half years, just my own treatment and recovery. Um, but you know, it's just been recent since my cognitive fog has been able to lift and I've been able to, you know, uh think with some clarity, but I have noticed a significant shift as it relates to um the amount of media attention, which I'll take any amount. As long as we can get people chatting, you know, um, it um, you know, ultimately, you know, um I I I just feel like whether or not it's positive or negative, it's conversation and it needs to happen. So um, yeah. Well, I can't thank you enough for all that you do for for the Lyme community. Um I just I think you're amazing. And um, you know, I'd love to have you on again in the future if if that's something that you know works in your world. Um but thank you so much for for coming on and and sharing your pro your own personal experiences with Lyme and how it's affected your life.

SPEAKER_00 47:36

Yeah, thank you so much. Very nice of you to say. But and I also just want to acknowledge you. Um, you know, you you were on my show, you went through your history, and you know, you're doing a great job as an interviewer. You know, you did a great job with with Chris Newby and uh and uh yeah, yeah. So that means a lot. So no, you have a great presence and you ask great questions, and you're a very good listener, which are are the keys to being a good podcaster and letting your guests uh have time to speak. So it's um things like this, just if you know, someone will reach out to me and say, Oh, I listened to your show with um the tick-chick or whoever it might be that I did a couple years ago. And gee, I shared that with my family, and that was really helpful. You know, I have an expression. I also do a sales podcast, like I mentioned, yeah. We've done over 850 episodes, and my statement is if one person listens to your podcast, then one person listens to your podcast. We want thousands, yes, right? Same thing with the book. If one person reads your book, then one person reads your book. Gee, I want thousands to read my book because and the same thing with your show. You want people to listen to find something that's gonna help them. So good for you.

SPEAKER_01 48:47

I do. Thank you. If I can, like you said, if I can have an a positive impact in in someone's own journey on this private hell, I I am happy to oblige. I will I will do anything. So thank you again for sharing your story. And um, it was just it was it's always a pleasure chatting with you. So thank you.

SPEAKER_00 49:13

Thank you.

SPEAKER_01 49:14

Thank you so much for tuning in to What the Morgux Podcast. I'm beyond grateful that you're here, and thank you so much for being a part of the special community. To learn more, you can visit us at whatthemorgs.com and you can follow us on Facebook and Instagram at WhatThemorgues Podcast. Thank you so much for tuning in.