Episode Transcript
[00:00:01] Speaker A: Welcome back to Integrative lyme Solutions with Dr. Karl Feldt.
[00:00:05] Speaker B: I am so excited about the show.
[00:00:07] Speaker A: That we have ahead of us.
[00:00:08] Speaker B: We have some phenomenal information that could save lives.
You're gonna need to tune in to what's going on today. The information is jam packed, so don't step away.
[00:00:24] Speaker C: Hello.
[00:00:24] Speaker B: Thank you so much for joining Integrative lyme Solutions with Dr. Karlfeld. I am your host, Dr. Michael Karl Fe Belt. I've been in clinical practice since 1987. I've seen pretty much everything under the sun, worked with so many different Lyme patients, and I know what a devastating disease this is. That's why I'm doing this podcast to make sure that you are armed with the information that you need in order to be able to be successful in your struggle with Lyme. We'll be featuring authors, doctors, professors, and also people like yourself that have gone through the journey that you're going through, that have been where you've been and is now on the other side. And they get to tell their victorious story as to how they battle Lyme so that you can implement that in your life as well.
Be sure to like us and write a review on whichever platform that you're listening on. What that does is it enables other people to see us more so that they have access to this information as well. So I'm so excited that you're tuning in and get ready for this upcoming show. It is going to be amazing.
Well, Jesse Rubin, awesome to have you on the integrated lime solution.
I mean, this is going to be fun. I mean, you have quite a story and doing so many amazing things, so this is going to be awesome.
[00:01:54] Speaker D: We're trying. We're just. We're out here trying, you know?
[00:01:56] Speaker B: Yeah, yeah. It's. It's. It's one of those things. You got to kind of roll up your sleeves and then keep on moving and. And hopefully that boulder will roll. Yeah, for sure. Yeah.
Well, well, so. So tell me a little bit about your story. I mean, you've. You're a songwriter, and I mean that. That's kind of your. Your main thing. And then all of a sudden. Yeah. Life change for you?
[00:02:20] Speaker C: Yeah.
2012, I was doing really well in my career. I was on the road a lot. I was traveling. I had just run my third New York City marathon. I was in the best shape of my life.
And then I got sick on Christmas Day of 2012 and then had, like, a flu that didn't really go away for like, two months and then felt okay.
[00:02:44] Speaker D: For a couple months.
[00:02:45] Speaker C: And then in like, midway through 2013 13, things started to get just strange. Like, I would. I remember, like, I would just get, like, nauseous randomly, and I'd have to go lie down or I was leaving, you know, hanging out with people because I just wasn't feeling like myself. And then the first. The first time that I had the thought of, like, something's going on here, I walked up the subway steps, and I got to the top of the steps and I couldn't breathe. And I, of course, had never heard the phrase air hunger before, but I remember thinking, like, that's so weird because I just ran like, a pretty fast marathon, like, two months ago, and now I'm like, I can't breathe. Like, that's just so bizarre. And then I just sort of went on this slow decline where I just was getting worse and worse and was going to my primary care doctor, getting all these tests, everything. Of course, I have an unbelievable ability to have every test come back totally normal and healthy.
It's a gift I have. And. And I just was obsessed with trying to figure out what was wrong with me. Got all kind of weird diagnoses. And then on some random website, I downloaded some random weird looking PDF that had like, a list of potential symptoms. And that was when I saw everything that I had going on all in one place. So, like, crazy fatigue, nausea, dizziness, memory loss, like, anxiety, depression, a crawling sensation under my skin, headaches, joints. I mean, just the list goes on and on.
And then I just started asking everyone in my life, hey, I think I have Lyme disease. What should I do? And met some other people who had had it because, you know, when I was growing up, Lyme disease was like this thing that wasn't that big of a deal. I lived in Pennsylvania. A lot of people had it.
And I finally, I saw a doctor in, like, the fall of 2013, and we did an hygienics test to confirm that I had Lyme disease. And then I. Yeah, I did, like, two and a half years of treatment where, like, stopped working, was at the doctor three to five days a week. I did antibiotics and then herbs and all these things. I mean, I was taking 80 pills a day at one point. And then they asked me if I wanted to try this experimental treatment, which was chelation and ozone, which is much more common now, but at the time was not.
[00:05:04] Speaker D: And I.
[00:05:07] Speaker C: The first time I did it, I was like, oh, I'm cured.
[00:05:10] Speaker D: You did it.
[00:05:11] Speaker C: And they were like, no, no, you're.
[00:05:12] Speaker D: You've been so sick for so long, you don't remember.
[00:05:15] Speaker C: And so I did it again, and then I was like, I'm cured now. And they were like, still not better. And it took a couple months, and then I was completely in remission starting in 2016 for, like, seven years. And, yeah, got my life back, went back on the road and started working in the Lyme disease community. And.
But I think that just to, like, generalize, I think there's two ways that people go when they experience something like this. One is like, man, that was horrible, and I'm glad it's over, and I never want to think about it again. And then there's the people who go, man, that was horrible. I'm going to do whatever I can to make sure that nobody else goes through this again.
And I think there's so much useless suffering.
And with an illness like this where, like, I got sick again in 2021 and had another, like, three and a half years of symptoms. And the thing about it that was so difficult, besides that I was sick and then healthy and then sick again, was like, there was no lesson that I needed to learn. You know, Like, I was already empathetic. I was already a kind person. I already cared about people.
So people would say, like, no, like, you're just think of all these things you're learning throughout this process. And I was like, I'm not learning anything. I'm not becoming a better person.
If anything, I'm becoming worse because I'm.
[00:06:37] Speaker D: Angry all the time.
[00:06:38] Speaker C: And, like, Lyme, one of the things they don't tell you is that Lyme disease can give you just an unrivaled amount of rage and resentment and dealing with all of that. And so, yeah, it's just. It's like a uniquely cruel illness. It's just like, it. It is. It is impressive in its ability to cause suffering. And so, yeah, I've just. It's been a huge part of my life since, like, 2012, 2013. And, yeah, now we're out here. I just started feeling better a couple months ago, so I'm getting back into life again, kind of for the third time now. And that's been.
That's had its own challenges of just thinking, like, okay, as soon as I get better, this is gonna happen, and this is gonna happen, and this is gonna happen, and then you get better, and you're like, oh, nobody cares. And the universe is.
You don't get, like, a boat. You don't get a medal for surviving it. And, yeah, it's so it's just. I mean, you understand? And I'm sure the people listening to this understand. It's just so complicated. And it. Yeah, it's.
[00:07:39] Speaker D: It's just.
[00:07:40] Speaker C: I wouldn't wish it on my worst enemy. I mean, it's just so unbelievable. So that's like a little. That's my treatment.
[00:07:47] Speaker B: Yeah. Treatment journey. So.
[00:07:49] Speaker D: Yeah.
[00:07:49] Speaker B: Kind of going back in the. In the beginning. I mean. So, I mean, obviously, yeah, you. You went to a bunch of doctors and. Yeah, yeah, that. That kind of common journey that everybody has, you know, And I mean, it's a.
[00:08:03] Speaker C: It's amazing how similar it is where, like, when a new person comes on a generation lime call and they're like, here's what's going on.
And it's like, I've been really sick and nobody knows what's going on, and all the tests are negative, and everyone's telling me that it's depression or anxiety or fibromyalgia or rheumatoid arthritis or Luba. Like, it's literally just like check marks until people find us. You know what I mean? Like, so it's.
Yeah, it's. When it's happening. I remember thinking when, like the first year or two, I was like, when I thought I had Lyme but nobody else did. And like, my family was not on board and a lot of my friends thought I was crazy. And like, like my best friend's wife was.
[00:08:45] Speaker D: Graduated from NYU medical school, and she.
[00:08:48] Speaker C: Was like, you're crazy. You're depressed. Listen to these doctors.
And it. I remember thinking, like, am I. Am I like, dealing with something that no one has ever dealt with before? Like, am I.
[00:09:00] Speaker D: Do I have some rare combination of.
[00:09:02] Speaker C: Crazy illnesses that has never happened in the. Like, you just. You just can't imagine that this is.
That it's happening. First of all, it's happening all over.
[00:09:12] Speaker D: The place, but also how unbelievably common it is.
[00:09:16] Speaker C: You know, like, there were probably a hundred thousand people within 20 miles of.
[00:09:19] Speaker D: Me because I was in Brooklyn, right?
[00:09:21] Speaker C: So, like, so many people suffering and not knowing it or trying to get treatment or figuring it out. Yeah.
[00:09:28] Speaker D: Sorry.
[00:09:28] Speaker C: I could talk for a long time.
[00:09:30] Speaker B: About this stuff and that. And I think that's the biggest thing is that you kind of feel that isolation, that there's no one, that you don't get recognized for what's going on, and. And no one. I mean, the family, like you're saying, you know, family and friends think you're just crazy. And. And you know, doctors are just kind of Throwing diagnosis at you, and. And nothing seems to stick. And, you know, so I think that's kind of the hardest thing that you just think. Feel you're in this island, you know, and nobody recognizes your. Your. Your journey.
[00:10:03] Speaker C: It's such a. It's such an intense thing to be dealing with all those physical symptoms of which, you know, at any given time, there's between two and a thousand.
And then on top of that, like, these people that love and care about you are telling you that they don't think anything's wrong. And then you're going to these doctors. I remember just like, you know, I'm going. I've got people calling in favors for the best internal diagnosticians and the. You know, and they've got all the degrees and they've got the coat.
[00:10:34] Speaker D: They're confidently saying things to me that now I know. Like, we have tons of research to.
[00:10:40] Speaker C: Disprove all of it. But when you're in a situation like that where someone who should know what they're talking about, who is highly educated, and for the most part, like, it's very easy as a Lyme patient to be like, I hate doctors. And they're all cruel and evil, and I don't think they are.
[00:10:57] Speaker D: I used to.
[00:10:57] Speaker C: I don't think they are. I think genuinely, generally, they want to help people. It's just a matter of. Just an insane amount of misinformation, you know, and so, yeah, that combination of physical suffering and that, like, you know, I remember turning to my parents in the doctor's office, where they're like, good news. All your labs are fine. You're perfectly healthy.
[00:11:18] Speaker D: And I turned to my parents, and.
[00:11:19] Speaker C: I was like, you don't understand. I'm worried I'm gonna die.
Like, I'm actually worried that I'm gonna die. And you're.
[00:11:28] Speaker D: You're telling me there's nothing wrong with.
[00:11:29] Speaker C: Me, and it's just not true, you know, and, like, my. My mom, like, printed out, like, the 10 most common symptoms of depression in young men, and I had all of them, you know, fatigue, fatigue, like, headaches, nausea, whatever it was.
And I remember saying to her at the time, and I thought it was a good line then, and I still do, which was treating what I was dealing with for depression would be like doing the dishes while the house is on fire.
Like, there's a time and a place for that. But there's something so much bigger going on here, and it. Even my now wife. I started. We started dating two or three months before I got sick, and she, she, she really, she was really supportive, but she was definitely, like, on the fence.
[00:12:16] Speaker D: For a little while.
[00:12:18] Speaker C: And I went to this psychiatrist, this very well respected psychiatrist. She drove me to the appointment and I sat in the chair and I told this guy my whole story. And I was sleeping 20 hours a day and all these things. And I finished up and he looked at me and he went, you know what you need? You need to wake up early and take brisk walks in the morning.
[00:12:39] Speaker B: This is a famous psychiatrist.
[00:12:41] Speaker C: Super. Well, like, you know, so. So many people had to call in favors.
He prescribed me an antidepressant. He prescribed me sleeping pills.
And, And I got in the car with my wife and I turned to her and I was like, you need.
[00:12:54] Speaker D: To be on board with what's happening.
[00:12:56] Speaker C: To me right now. Or like, I can't do this. Because my, you know, my family would say, it just feels like you're spending.
[00:13:03] Speaker D: So much energy trying to convince us that something is wrong.
[00:13:06] Speaker C: And I was like, yeah, and I shouldn't be.
I, you know, I, like, I never lied. I never got in trouble.
[00:13:13] Speaker D: I got straight A's my whole life.
[00:13:14] Speaker C: Like, why would I make. Why would I be making this up? It's like such a crazy thing.
It's, it's. Yeah, it's. It's just so. So it's the, the up and downs of it of like, oh, maybe I'm gonna have a good afternoon today. And then this. Your symptoms come on, and it's just like your world crumbles and you disappear.
[00:13:34] Speaker D: Off the face of the earth for.
[00:13:35] Speaker C: People, and they're worried about you, and then there's like a limit to people's empathy and they stop checking on you, and that's really hard. And the way we treat chronically ill people in this country with this sort of like, victim Blamey, like, well, you know, the test says you're fine, so what are you must be doing something wrong. It's just so cruel. And we see it so often, week after week after week of people dealing with the same stuff, you know?
[00:14:01] Speaker B: Yeah. I mean, they kind of go, if the tests are all right, you know, then think, well, there's nothing wrong with you, so it's got to be in your head. And so now here comes, you know, Xanax and Prozac and, and brisk walks in the morning.
[00:14:15] Speaker C: You know, I mean, especially at the.
[00:14:17] Speaker D: At the time, I was literally in.
[00:14:18] Speaker C: Bed, like, some days, 20 hours a day. Like, I would, I would wake up and it would sometimes take me three or four hours just to have the energy to sit up. Other. Otherwise, I was just like, staring at the ceiling.
And like, the word that we have in English is fatigue. What was happening to me was so much like fatigue is you get two bad night sleeps and you're kind of tired. What happened to me was like, there's a 18 wheeler truck on my chest. You know what I mean? Like, it was so much worse than what we have language for.
And I think that that's another thing that's so challenging is it's so hard to convey how bad it actually is, because you could say I'm tired and I have headaches and I'm a little dizzy. And people think that they have been through something similar. And it's like, I can.
[00:15:07] Speaker D: Unless.
[00:15:08] Speaker C: Unless you get it, you just don't get it.
[00:15:11] Speaker B: You know, I mean, it should be kind of like, you know, you're saying fatigue. I mean, it should be like the Eskimos that have like, I don't know how many words for snow.
[00:15:18] Speaker C: Exactly.
[00:15:19] Speaker B: Yeah, there's. You know, fatigue is not just fatigue there. I mean, it's a huge variety of what it is. And Lyme fatigue is not just fatigue. You know, like you're saying. I mean, it's just something beyond where, you know, it's a feat to take a shower. Yeah.
[00:15:36] Speaker C: Oh, yeah, Yeah. I mean, like, that. It's like that's all I'm doing that day sometimes. You know what I mean? Or like, all right, I'm gonna go.
[00:15:44] Speaker D: Meet my friends for brunch because I haven't seen another human.
[00:15:46] Speaker C: I haven't talked to another human being in four days.
But, like, I would get lost on the way there. Even though it was four blocks from my apartment, I'd be there and I'd be sitting there and in my head going, I don't want to be here. I need to go home. I mean, that. That was the part that really broke my heart, was like, when I first got sick, you know, and I was. I was touring all the time, and, like, being a singer songwriter was like.
[00:16:08] Speaker D: So much of my identity.
[00:16:10] Speaker C: And Lyme disease took away every aspect of that identity. And so on top of physical symptoms and not having the support that I needed emotionally, I was like, who is a singer songwriter who doesn't sing or write songs?
[00:16:25] Speaker D: Who am I in the world?
[00:16:27] Speaker C: You know, it's such an identity crisis on top of everything else, you know?
[00:16:32] Speaker E: Hello, dear listeners, this is Dr. Michael Karlfeld, your host of integrative Lyme solutions. Today I'm excited to share an exclusive opportunity from The Karlfeld center, where we blend healing power of nature with groundbreaking therapies to combat Lyme disease and its associated challenges. At the Karfel center, we're not just fighting Lyme. We're revolutionizing the way it's treated with cutting edge therapies like photodynamic therapy, full body ozone IV therapy, silver IVs, brain rebalancing, autonomic response testing, laser energetic detoxification, and more. We aim to eradicate Lyme. Our approach is comprehensive, supporting your body's immune system, detoxification processes, hormonal balance and mitochondrial health, ensuring a holistic path to recovery. Understanding Lyme disease and its impact is complex, which is why we're offering a free 15 minute discovery call with one of our Lyme literate naturopathic doctors. This call is your first step towards understanding how we can personalize your healing journey, focusing on you as a whole person, not just your symptoms. Our team, led by myself, Dr. Michael Karls, is here to guide you through your recovery with the most advanced diagnostic tools and individualized treatment plans and supportive therapies designed to restore your health and vitality. Whether you're facing Lyme disease head on or seeking preventative strategies, we're committed to your wellness. Take the first step towards reclaiming your health. Visit us at thecarlfulthcenter.com or call us at 208-338-8902 to schedule your free discovery call. At the Karlfeld center, we believe in healing naturally, effectively and holistically.
Thank you for tuning in into integrative lyme solution with Dr. Karl Feld. Remember, true health is not just the absence of disease. It's achieving the abundance of vitality. Let's discover yours together.
[00:18:33] Speaker B: I mean, you're all about, as that profession, you're all about connecting with people. And here you're sitting there with your best friends and you want to not connect, I mean, be anywhere else but there.
[00:18:46] Speaker C: The idea of being on stage and in my head going, I don't want to be on stage.
[00:18:50] Speaker D: That would never have occurred to me.
[00:18:52] Speaker C: And I, and that was when I had to call my parents and be like, I just want you to know, like, I'm not, I'm not working until this is over. And that, that was a whole thing. And, and I know there are people who, who stay working during their illness and their treatment, which, like, kudos for them. I, I couldn't function. I couldn't do it, you know, and.
[00:19:13] Speaker B: And so, and, and also you have this. When you go from doctor to doctor, I Mean, you get this, you know, high that maybe this person's gonna understand and find the solution. And. And now I'm finally kind of figuring out what's going on with my body, and then you, you know, get dumb advice like brisk walks. You know, it's.
[00:19:32] Speaker C: It's. It's. It's interesting because it was either, oh, there's definitely nothing wrong with you. Congratulations. Or, well, I don't know exactly what it is, but I'm the one that's going to be able to fix it immediately. You know, I. I just, like. It was like, a mix of, like, arrogance and false hope. And I think what's missing.
I get that when you go to the doctor, you want to talk to somebody who's confident in the things that they're saying.
But we also used to, like, put leeches on people's bodies and, like, suck blood out of them, like medicine.
[00:20:04] Speaker D: We're not done.
[00:20:05] Speaker C: And so when you have this overwhelming.
[00:20:08] Speaker D: Evidence that there are so many people.
[00:20:11] Speaker C: Dealing with the same symptoms, to have each one of them individually told there's nothing wrong with them and it's in their heads that it blows me away that there's no curiosity about this. If this was. If this was random and not happening very often, sure. But, like. And also, by the way, I'm a straight white male, and the way I.
[00:20:30] Speaker D: Was treated by the medical community was unconscionable.
[00:20:35] Speaker C: When I hear about, like, women, people of color, different minorities, like, it's.
[00:20:41] Speaker D: It's inhuman.
[00:20:42] Speaker C: Like, it's.
[00:20:42] Speaker D: It's just.
[00:20:45] Speaker C: It's. It's just. It's just so uniquely cruel, you know?
[00:20:49] Speaker B: Yeah. Bad enough, you know, with. With you having, you know, being straight white male, and then obviously, if you add those additional layers of, you know, then. Yeah. I can't even imagine how they kind of put down and look down on somebody.
[00:21:05] Speaker D: Yeah.
[00:21:06] Speaker B: Yeah. And so when you then got to, you know, somebody saying, well, let's do this, you know, ozone and chelation, and you talked about antibiotics. I don't know if all of that happened under the same roof, but what I mean was that kind of thinking that. Here's another one, you know, I've been heartbroken again and again, but, you know, let's try it. I mean, what was your attitude, you know, when you stepped into that?
[00:21:33] Speaker C: So I basically, like, asked everyone in my life if they knew someone who had Lyme disease, and then if they did, I would ask them where to go. And I basically chose the one that got brought up the most, and they're called the Marson center in New York City.
And I stuck with them for three years. I didn't go anywhere else.
And I remember there was this, like, I did oral antibiotics for six months. I did IV antibiotics for 18 months.
And then. And then Chinese herbs and medicines and tinctures and all, you know, all these things.
Like, my life was just run by my medicine schedule. You know, like, wake up. I gotta take stuff when I wake up, before breakfast.
[00:22:12] Speaker D: Take this before, during breakfast, this after.
[00:22:15] Speaker C: You know, before lunch, all day. That's what I was doing.
[00:22:18] Speaker D: And there were.
[00:22:19] Speaker C: There was like a couple years where I was doing these treatments and I was spending all this money, and my wife was saying, like, you know, you're not really getting better. Why are you still doing this? And my response was like, you don't understand. I have to do something.
And I.
[00:22:35] Speaker B: So you did all these things. I mean, all the pills and potions and. And antibiotic. And so you hadn't gotten to, like, the chelation and ozone at that time.
[00:22:46] Speaker C: This was like, we've gotten to the.
[00:22:49] Speaker D: End of what we know to do.
[00:22:51] Speaker C: And after this, it's going to be kind of like we're going to try stuff that we think could possibly work for you.
And it happened to be the first one that they suggested. I have no idea why chelation and ozone worked for me. I have recommended it to hundreds of people. Some of them got better, some worse, some it's done. Nothing. There's no rhyme or reason for it. You know, when I.
[00:23:14] Speaker D: When I talk to Lyme patients now.
[00:23:16] Speaker C: What I describe is like, your only job is to try stuff.
That's.
[00:23:22] Speaker D: Your only job is to try treatments.
[00:23:24] Speaker C: And if it doesn't work, try something else. And if it doesn't work and people come on and they, you know, we so crave answers. That's the other thing. It's like not knowing what's wrong. Like, that question just eating away at you. Day after, like, I think I have Lyme disease, but my primary care physician doesn't, and my parents don't think I do, and all these other people that love and care about me don't think I do.
So, like, what is it? And then you start. It starts getting really, like, what did.
[00:23:52] Speaker D: I do to deserve this? Am I actually a bad person?
[00:23:56] Speaker C: Like, am I being punished for something.
[00:23:58] Speaker D: Your brain, like, tries so hard to justify?
[00:24:02] Speaker C: You know, you're. I'm laying in bed and I'm like, you know, is.
[00:24:04] Speaker D: Is there stuff growing in the walls?
[00:24:06] Speaker C: Is my apartment killing me?
[00:24:08] Speaker D: Is it New York City? Am I Allergic to something.
[00:24:11] Speaker C: Am I gonna die?
[00:24:12] Speaker D: Like, it just.
[00:24:14] Speaker C: Yeah, it's. It's. It's so.
It's so wild. But, yeah, when I. When I found the Marsden center, like, a lot of people, like, jump around to different Lyme doctors, and for whatever reason, I really trusted them. I really. They were the first people who. They were the first medical office that I went to that really listened to me, and I definitely had moments of being like, all right, it's been a year and a half.
[00:24:37] Speaker D: It's been two years.
[00:24:38] Speaker C: But I. They're just something. Some voice in my head just told me, like, just stay.
Stay here. You know? And I was very fortunate that I did.
[00:24:47] Speaker B: Yeah, yeah, yeah, that's. And that's the thing is that it's that challenge, you know, whether, you know, is this the right place or not the right place?
And a lot of times, I mean, when you deal with something as. As complicated and complex as Lyme, it's going to be a bit. And. Yeah, how long is that bit? And how much. How much, you know, how much money is that bit? You know? And that's. That's always, you know, what you're dealing with.
So. Yeah. Yeah, so you get. Well, you found the ozone, did the chelation, you know, back on tour, back on being you, doing what you love, and then, you know, why do you think you relapsed?
[00:25:30] Speaker C: We got a dog during the pandemic, and he came with a parasite called giardia, which is very common for puppies to have.
And two weeks after we got him, I started having symptoms of giardia.
[00:25:43] Speaker D: Never tested positive for giardia, even though.
[00:25:45] Speaker C: I tested a dozen times.
[00:25:47] Speaker D: And over the course of three and.
[00:25:49] Speaker C: A half years, those symptoms never went away.
And I think whether I got a parasite or not or I picked up some bug or something, it makes sense.
[00:25:59] Speaker D: That my immune system is a mess.
[00:26:00] Speaker C: You know, like, every time I get sick, when my wife gets a cold for two days and then I get it, it's, you know, three weeks, that kind of a thing. And I think between the antibiotics and just whatever was going on in my body, it just couldn't kill it off, and it just never went away. And same thing, like, couldn't leave the house, Going to all these doctors, hundreds.
[00:26:18] Speaker D: Of tests, all this money out the window.
[00:26:20] Speaker C: You know, it just brought all that stuff back, because when I. When I went into remission the first time, like, they. They don't tell you, like, when you've.
[00:26:29] Speaker D: Been sick for a long time and then you're better again.
[00:26:31] Speaker B: You.
[00:26:31] Speaker C: You're not just, like, floating on a. You know, like, you think, like, once I get better, I'm going to be full of gratitude and life's going to be so great.
The gratitude lasts about two days, and then capitalism comes in, and it's like, what have you done for me lately? And are you working and are you making money? But also, like, you know, you think all the time, like, oh, I just want to go back to being who I was before.
[00:26:56] Speaker D: You're not.
You're like, you've had a totally different life experience than most of your peers.
[00:27:03] Speaker C: And so I would have things like, I don't have anything to talk to these people about. I don't relate to anything they're saying. Like, I don't want to talk about what's happened to me the last couple years, but that's all I've been talking about. And, like, I didn't touch.
[00:27:17] Speaker D: I didn't touch a lawn for two years.
[00:27:19] Speaker C: When I got better, like, concrete only, you know, like, I. I'd walk, I'd see Central park, and I'd be like, you guys are crazy. Like, what are you doing? You know, And. And, like, waking up every day thinking, like, the bottom could drop out at any moment. Like, it took years before I, like, would get through a day and be like, oh, I didn't worry about getting sick today. Like, that took years to get to that point, you know? And, yeah, it. And I'm dealing with it now, like, starting over again. We just moved. My wife is an actor, and she booked a lead on a soap opera.
[00:27:57] Speaker D: Down here in Atlanta, so we had to move to Atlanta.
[00:27:59] Speaker C: And, like, I just got better right before we moved, but, like, I haven't. I didn't leave the house for three years. I don't know any of these people. They don't know anything about me. Like, it. It's so, like, how much should I be talking about?
[00:28:12] Speaker D: Should I be only talking about Lyme disease?
[00:28:14] Speaker C: Do I think half these people have Lyme disease? Like, you know, it's just. It's. It's just navigating it.
One of the first things we did was we took our dog to the vet, and she was like, oh, I.
[00:28:24] Speaker D: See the list of vaccines here.
[00:28:26] Speaker C: I don't really recommend the Lyme vaccine. We don't really have that here. And I just was. I just looked at my wife and she looked at me, and I was just like, yeah, he's going to get the Lyme vaccine. You know, just like, we're not going to talk about this.
But it's. It's. It's like, it's a great problem to have, obviously, but, like, re.
Inserting yourself back into your life.
Like, my wife had to, like, relearn how to be my wife because I was so negative and not making money, and it was really challenging. And then. Then I got better again, and then she has to recalibrate how. How I'm going to be. It's. It's.
[00:29:03] Speaker D: It's so much more than just happening to you.
[00:29:05] Speaker C: It's everyone in your life. And.
[00:29:08] Speaker B: Yeah, and that's the thing. I mean, relationships is kind of the biggest thing.
[00:29:12] Speaker D: Yes.
[00:29:13] Speaker B: And. And here, I mean, you had a new relationship, and. And to me, that's just amazing how you guys were able to stay together. And I mean, that's. I mean, kudos to your. Kudos to your wife. I mean, that.
[00:29:26] Speaker C: That.
[00:29:26] Speaker B: That's awesome.
[00:29:27] Speaker C: I totally agree. I tried to break up with her so many times, like, especially early on when I was like, this is not a relationship.
[00:29:35] Speaker D: I'm laying in bed, you're bringing me.
[00:29:37] Speaker C: Dinner, and I'm yelling at you. This is not a relationship. You know, like, I don't want to take this out on you.
[00:29:43] Speaker D: You don't deserve this.
[00:29:44] Speaker C: And, like, after the first time, you know, we went to some conferences. We shared about what it was like to be in a relationship when one of you has Lyme. And it was. She would, like, speak to people's partners and really coach them through that.
[00:30:00] Speaker D: And then when it happened again, she.
[00:30:01] Speaker C: Was like, I'm out. Like, I. I can't do this, and I already put my time in. And it's. It's so. It's so hard because, like, she.
[00:30:10] Speaker D: She.
[00:30:11] Speaker C: My life was on hold when I got sick that first time.
[00:30:14] Speaker D: Hers wasn't.
[00:30:14] Speaker C: And she would have real issues and.
[00:30:17] Speaker D: Problems that she wanted to talk to me about.
[00:30:19] Speaker C: And I would literally look at this.
[00:30:20] Speaker D: Person that I love more than anyone.
[00:30:22] Speaker C: In the world and be like, I don't have the bandwidth to.
[00:30:25] Speaker D: To listen to or care about your problems.
[00:30:28] Speaker C: And I love you, and I'm sorry, but I can't. I can't do this.
And so she wasn't getting anything that she needed from me, and I had.
[00:30:38] Speaker D: A good reason for not providing it.
[00:30:39] Speaker C: To her, but, like, that doesn't matter. Yeah, being in a relationship when one of the people has Lyme disease is like you. It's.
It's extra tough, you know, and we didn't even get that, like, honeymoon phase. We had that for three months. And then my life just disintegrated and so, yeah, I mean, it's, it's. She's an. She's unbelievable. And she has been an incredible, mostly an absolutely incredible support system through all of my health stuff. And now it's like I feel all this pressure because she, she helped me through all that stuff and I'm like, I want to make it worth, I want to make her life good now that I'm better. And, you know, I want to be happy all the time and do fun things and like to make up for the last, you know, six of the last 12 years. And so, yeah, it's, it's being in a relationship, dealing with this. It makes you really like the word we have is selfish. But it's not selfish.
[00:31:34] Speaker D: It's out of necessity.
[00:31:35] Speaker C: It's just self focused.
But being that self focused while being in a relationship is basically impossible. You know, Basically impossible.
[00:31:44] Speaker B: I mean, you have, I mean, that's, it's. The self focus is just a level of survival. I mean, it, it's. Yeah, yeah. So it's nothing to do like you're saying, it's nothing to do with being selfish. It's just, you know, if I'm going to continue to exist on this earth, you know, I need to use whatever possible resource I have in order to be able to move through this. You know, because you're dealing with a Lyme brain. You're dealing with a body that's, you know, Lyme impacted. So your ability to think and focus and then find solutions completely, you know, completely challenged. Like you're saying here, laying in your New York apartment and thinking, things are growing on, on the walls. I mean, you're, you're reasoning with a brain that is not a brain that's able to reason. Yeah, so.
Yeah.
Well, so how did you, I mean, how did you go get through this, this next bout then? I mean, what, what was the. I mean, obviously you tried chelation and ozone again. I.
And not the thing.
[00:32:46] Speaker D: Went right back to the old favorites.
[00:32:47] Speaker C: Tried antibiotics, tried chelation, ozone, tried all these things again.
[00:32:53] Speaker D: Similar thing, right?
[00:32:54] Speaker C: Like up all night doing research, trying to figure out what to do.
Stomach was just not getting better. And then I found a clinic that does a treatment called fmt, which stands for fecal matter transplant. If you're listening to this, like, welcome to the Lyme world, things get weird and gross really quickly.
It's not FDA approved. It's only FDA approved for something called recurrent C. Diff, which is a recurrent parasite infection. But there's a lot of Research that it is extremely helpful when dealing with stomach conditions. And so, yeah, I did it a.
[00:33:28] Speaker D: Couple times through a lab in California.
[00:33:30] Speaker C: It 100% saved my life. Like, I.
Yeah, I was. It was really. It was tough. I was barely eating. I lost 60 pounds. You know, I was not functioning in the world. And they really. They were really amazing. And there's only a couple places that do it, and I was very fortunate to find them. And. But that was. Yeah, I mean, that was in October. Really.
[00:33:52] Speaker D: October and December.
[00:33:54] Speaker C: It really kicked in in the last, like, three or four months. So I'm still like.
I have days where I'm like, am I better? I don't know. You know, it's just like this constant.
Is it going to come back? Am I getting a little worse? Like, all these things. It's just like going all the time, you know?
[00:34:10] Speaker B: Yeah. Yeah. Because, I mean, every. Every kind of symptom or anything you're feeling, then you're, you know, you're trying to, you know, analyze, you know, what's. What's happening. And. And like, you're saying that the fear of it, you know, the bottom just dropping off. Oh, yeah, it's always there, the ptsd.
[00:34:26] Speaker C: So, yeah, a headache is never just a headache, you know, like a ache is never just an ache. It's always like, oh, no, what's happening? What did I do? How do I stop this? What if it, you know. Yeah, it does a number on you. It really does.
[00:34:43] Speaker B: And then you're mentioning, when you have lime, people tend to go in two different directions. One just happy you're surviving, and the other, Naya, want to tell the world that we need to figure this out and build community.
And you went that path. So tell me a little bit about that path and, you know, why you did it. And also, what. What is that?
[00:35:12] Speaker C: Yeah, I.
When you talk about Lyme disease, you can't skip over the fact that, like, lyme patients are 12 times more likely to end their lives than non Lyme patients. Like, the mental toll that it takes is really hard and really scary. And I had been going to my doctor for a while, and I met some other people that were around my age through my doctor's office, and they invited me. They were, like, getting together for dinners every couple weeks, and they invited me. And I was two and a half hours late because I had gone to some stupid doctor that my parents wanted me to see in Pennsylvania, and it was a giant waste of time and money. And I walked into this apartment and, you know, it's Freezing cold in New York. I've got 30 layers on. I take them all off. I walk into this room, and there's, like, seven or eight other people my age. And I was like, oh, my God. I'm sorry I'm late. Is this. Is this the lime dinner? Like, do you got. You guys have Lyme disease? And they were like, yeah.
And I was like, you get it? And they were like, yeah.
And I sat down at this table, and I literally went from like, I don't know if I can do this anymore, to, like, okay, I'll. I'll stay because of these people.
[00:36:32] Speaker D: And throughout my.
[00:36:34] Speaker C: That first bout of illness, they were really my lifeline, you know? Like, my wife, it would be hard for her because she couldn't give me the support I needed. And I would say, like, you don't.
[00:36:46] Speaker D: You can't.
[00:36:46] Speaker C: You don't understand. And so we would get together every couple weeks. We were talking constantly, and just, like, to have somebody to complain to, to talk about treatment, to, like, just talk.
[00:36:56] Speaker D: Through all this stuff, to just not be alone.
[00:36:59] Speaker C: And so when I. When I got better, I found a group of people that had been sort of in the Lyme space, and we.
We wanted to figure out a way that we could help. And so we. We got together, and we started having weekly calls where we were just trying to, like, brainstorm what we could do.
And I brought up that moment of meeting those people, and I was like, I think.
I think what we should do is, like, we should do meetups. Like, we should. We are our idea, and it still is, but, like, our vision is that. So we created this thing called Generation Lime.
And we really. Early on, we were like, we could either be medium at a lot of things, or we could be really good at a couple things. And the thing that we knew to do, there are all these great organizations that are raising money and doing research and all that stuff, and that's awesome. But for the people who are suffering right now, like, they need support right now. And so the best thing that we knew to do was to connect them with other people who understood what they were going through.
And so Generation Lyme, we think. We haven't, like, done a ton of.
[00:38:08] Speaker D: Research on this, but I'm pretty sure we are.
[00:38:11] Speaker C: We offer more online meetups for Lyme patients than any other organization, certainly in America, possibly globally.
We have them almost every day now.
But we also have special.
[00:38:23] Speaker D: We have meetups for everyone, but we.
[00:38:24] Speaker C: Also have meetups for. We have a women's meetup and a men's Meetup and an LGBTQ meetup. And a meetup that's later at night.
[00:38:33] Speaker D: For people on the west coast and.
[00:38:34] Speaker C: An international meet up that's early for people in Europe and Asia.
We have a meetup for parents.
[00:38:40] Speaker D: Parents either of children who have Lyme disease or parents who have Lyme disease themselves.
Parents who have Lyme disease who are trying to raise their children beat themselves.
[00:38:50] Speaker C: Up on a level that I can't even imagine. You know, we have a meetup for supporters and partners. We have. I'm trying to think of what else we have. We have so many. But it's just there's so many different people that need help.
And so our vision is that generation.
[00:39:06] Speaker D: Lyme becomes AA for Lyme disease, where no matter where you are in the.
[00:39:10] Speaker C: World, no matter what time it is, there's a meetup that you can come.
[00:39:13] Speaker D: On and get the support that you need.
[00:39:15] Speaker C: You know, and we've. We've. We've been having meetups since, like, 2021. We just hit, like, 15,000 participants. We've had people from almost all 50 states, if not all 50 states, a.
[00:39:29] Speaker D: Bunch of countries around the world.
[00:39:32] Speaker C: And so many people's stories are the same.
And we get to watch people connect with other people that understand them and then go into each other's lives outside of our calls so they have that support. You know, we've had, like, we've gotten, like, invited to weddings of people we've never been in the same room with, but we've spent hundreds of hours with on the Internet, you know, so Generation Lyme.
[00:39:57] Speaker D: We have our meetups. We have a ton of resources online.
[00:39:59] Speaker C: Our website is basically, if someone was feeling sick or just got newly diagnosed, what would they want to know? So that's what we have.
[00:40:07] Speaker D: We have resources for housing, financial assistance.
[00:40:11] Speaker C: We have resources for, like, if someone.
[00:40:13] Speaker D: In your family doesn't believe that you.
[00:40:14] Speaker C: Have Lyme, here are, like, the very clear, simple studies and information to give them that's, like, easy to digest, right? We have stuff like that. We have a blog for supporters who are trying to navigate this world with someone they love.
We host online events.
[00:40:32] Speaker D: We do, like, a talent show, a Christmas party every year with a talent show.
[00:40:35] Speaker C: Because it turns out just because people.
[00:40:37] Speaker D: Are sick doesn't mean they're not unbelievably talented.
[00:40:40] Speaker C: And we also think just because you're sick doesn't mean that you shouldn't have.
[00:40:44] Speaker D: Things that you're excited about and can look forward to.
Like, so we have a whole day of online stuff that's free. And we do a podcast, and we have events and we have speakers, and.
[00:40:54] Speaker C: We do games, and we do, like, some of these.
[00:40:58] Speaker D: Some Lyme patients are some of the.
[00:40:59] Speaker C: Most talented people on earth, and they.
[00:41:02] Speaker D: Don'T have the ability to perform for people because they can't leave their houses.
[00:41:07] Speaker C: You know, like, so it's. It's really.
That's our, like, big mission is, like, for people who are sick right now, like, what can we provide for them? And so it's. It's. It's been a really amazing experience.
[00:41:21] Speaker D: In some ways, it is the only.
[00:41:23] Speaker C: Thing that makes what has happened to me worth it. That's, like, why I do it, you know?
[00:41:28] Speaker D: And by the way, also a huge.
A huge impact on my wife's life.
[00:41:34] Speaker C: Like, I've had a call with the.
[00:41:35] Speaker D: Other Generation 9 board members every Monday for over five years. I've hosted every Wednesday for five years.
[00:41:42] Speaker C: That means two nights a week. We're not doing anything. I'm not doing anything.
And if I've got a podcast like this, that's three nights in a week.
But it.
I have to, because I laid there for so long going, like, I have to do whatever I can.
[00:41:59] Speaker D: And it's been years since my first illness, and that has never gone away.
[00:42:05] Speaker C: Like, if I can.
If Generation Lyme and me, I talk about Lyme disease at every show, every performance I do.
And no matter if there's 10 people there or a thousand, somebody in the.
[00:42:17] Speaker D: Room has Lyme disease, know somebody who.
[00:42:19] Speaker C: Has Lyme disease, know somebody who's sick.
[00:42:22] Speaker D: But they don't know why they're sick.
[00:42:23] Speaker C: And there's, you know, like, it's so prevalent, and it's going to be a part of my life, you know, as.
[00:42:30] Speaker D: Long as I live.
[00:42:31] Speaker C: I can't.
It's. It's been creating Generation Lyme and working in that space and now getting to do policy stuff and advocacy stuff, and that. That is the stuff that I really want to do.
Because if we gotta fix it on a policy level, we gotta fix it on a funding level. We're getting basically pennies compared to other illnesses. You know, we're asking for 100 million. We should be in the billions for sure. This is a major epidemic, you know, and it's hard to know that and have.
And have the medical community be so behind.
But Generation Lyme is the thing that makes it palatable to have survived that.
[00:43:16] Speaker B: And what. What an incredible organization. I mean, and it's exactly that. I mean, you need, like, you're saying, I mean, to have community and have people that, you know, to remove that isolation, you know, where you're. You recognize you are not alone. And then, I mean, all the offshoots that you're saying, you know, the, you know, parents, you know, would Lyme and. Yeah, that's incredible because then it becomes even more relatable and you can really understand each other and really kind of feel that, you know, somebody's there because like you said, I mean, the. The likelihood of saying that, I can't handle this anymore. I need to move on, you know, and I can't live this life anymore, you know, that that's so much higher when you're in this position.
And then to have somebody there that, that you can lean on, you know, and obviously, you know, at. When you're a large group, there's always going to be some that is sicker and then other people that are not as sick, you know, so then you can kind of shift, you know, how. How you support each other through that whole journey and, and to have that opportunity, I. I think that's phenomenal. So, I mean, 15, 000 people at this point. I mean, that's incredible.
[00:44:34] Speaker C: And it's.
[00:44:35] Speaker D: And it's only growing.
[00:44:36] Speaker C: And honestly, like, the pandemic was one of the best things that happened to us. Obviously, it was a nightmare. But we started doing online meetups because we were like, this is what AA does. We'll just do this. The problem is you can't get Lyme.
[00:44:50] Speaker D: Patients in a room because they don't have the energy.
[00:44:53] Speaker C: So when we started doing online, it became really clear. Like, some people call in on video with their mic on, and they're really engaged.
[00:45:03] Speaker D: Some people, they're muted, their camera's off, They've got us on in the background. They're just listening.
[00:45:08] Speaker C: Like, we want people to show up.
[00:45:10] Speaker D: However they are, because for some people, sitting up for an hour, not possible.
[00:45:16] Speaker C: And we wanted those people to be able to participate too fully.
[00:45:20] Speaker D: So, like, however you are and wherever.
[00:45:22] Speaker C: You are and however you're feeling like is totally okay, you know, and that technology has made it really helpful for us to reach more people.
But I.
[00:45:35] Speaker D: The parents and the supporters and stuff.
[00:45:38] Speaker C: Like, we didn't even realize how important that was until we started doing it. Like, those people need a place to go to complain about you that is safe and welcoming and, you know, like, because, like, my. I couldn't have my wife complain to me about taking care of me. That doesn't work.
[00:45:59] Speaker D: That was horrible.
[00:46:00] Speaker C: Then I'm feeling guilty on top of it, you know, but like, so to.
[00:46:03] Speaker D: Have a place where supporters can go.
[00:46:06] Speaker C: Who are overwhelmed and at the end.
[00:46:08] Speaker D: Of their wits, at their wit's end.
[00:46:10] Speaker C: And what do I do? And how, like, does. Has anybody ever dealt with this before?
[00:46:13] Speaker D: Similar thing.
[00:46:14] Speaker C: Yeah, lots.
[00:46:17] Speaker B: I'm sure that's saving marriages. I'm sure that's saving. Yeah. Yeah. And even. Yeah, like parents with a child dealing with Lyme.
I mean, there's so many divorces just with that, you know, because there's. There's one parent always that's going to be the one leaning in, we got to figure this out. And then another parent that says, I can't deal with this anymore.
[00:46:37] Speaker D: Yeah, there's.
[00:46:38] Speaker C: It's similar. It's similar with, like, with parents and supporters. Like, like, some. Some people come on our calls and they're like, my mom has done all.
[00:46:46] Speaker D: This research and they started their own nonprofit and they're petitioning their senators. And then there are some family members.
[00:46:52] Speaker C: That ignore it completely.
[00:46:53] Speaker D: Pretend it's not happening. Don't want to know. My parents.
[00:46:58] Speaker C: I love my parents.
My parents have never read a book about Lyme disease. They've never seen a movie about Lyme disease. I got an award through Global Lyme alliance for the work that I had done.
[00:47:16] Speaker D: And before they gave me the award, there was a video with some young.
[00:47:19] Speaker C: People with Lyme disease. And one of them was in a wheelchair, like, couldn't walk, and she was rolling around. And my dad turned to me and went, God, I didn't know it could be this bad.
[00:47:28] Speaker D: And I was like, why do you think they're giving me an award, man? Because that's.
[00:47:34] Speaker C: It's. So. It's. It's.
[00:47:36] Speaker D: And it. By the way, then it took years.
[00:47:38] Speaker C: For them to admit, like, it was.
[00:47:39] Speaker D: Easier for us to ignore what was.
[00:47:41] Speaker C: Happening than to deal with the reality.
[00:47:44] Speaker D: That our child was a sick.
[00:47:46] Speaker C: Sick. As you were.
[00:47:47] Speaker D: Years.
[00:47:48] Speaker C: It took years, you know, and.
[00:47:51] Speaker B: And I think. I mean, when you feel that you don't have a solution, when. When it's just beyond what. What you can even comprehend and you don't. Yeah. You don't have something to offer, then it. It's just to. It's kind of like a. A trauma in the past, you know, when you're a child and. And it's just too much. And so there. It creates kind of almost like a break within you and you can't deal with it, so it's just stored in the. Back there somewhere.
[00:48:20] Speaker C: And also, Western medicine is so linear and black and white.
[00:48:24] Speaker D: Right.
[00:48:25] Speaker C: You get sick, you take a test, the test comes back positive. You take this treatment, you get better.
[00:48:30] Speaker D: Linear.
[00:48:31] Speaker C: So if your experience with disease is linear, like, well, I get sick and then I get better and I get sick and then I get better, and sometimes I get really sick and then I get better.
[00:48:43] Speaker D: If you're.
[00:48:44] Speaker C: If you've never had the experience of I'm sick and I'm sick and I'm sick and I'm sick, you literally can't. Like, there's the way that we treat chronically ill people in this country, the victim blaming that we do of like.
[00:48:59] Speaker D: Oh, you're not getting better.
[00:49:01] Speaker C: Well, what are you doing then? Because everyone else has. Everyone else has gotten better, but you're not getting better. Like, they cannot comprehend, doesn't exist to them.
[00:49:13] Speaker D: And that is such a huge barrier.
[00:49:14] Speaker C: When you're trying to explain it to.
[00:49:16] Speaker D: People in your life.
[00:49:18] Speaker C: It goes against everything that they know about illness and also about doc.
[00:49:25] Speaker D: Like my parents generation, like baby boomers, they believe doctors are superheroes.
[00:49:30] Speaker C: And they are, but they, like, when.
[00:49:33] Speaker D: They were growing up, you trusted everything.
[00:49:35] Speaker C: A doctor says and like, breaking that pattern of, like, when it comes to.
[00:49:41] Speaker D: This, unfortunately, they just don't know.
[00:49:44] Speaker C: That's really hard for people. It's really hard to break that.
[00:49:49] Speaker D: That rule that they have.
[00:49:51] Speaker C: And it can sometimes take.
[00:49:52] Speaker D: Sometimes take years, like, years.
[00:49:55] Speaker C: And it's something that comes up a lot, especially with older community members, 50s, 60s, 70s, where they come on, young people come on and they're like, I need a treatment. What's going to work for me? Older people come on and go, where's the best doctor that's gonna fix this? Who's the one doctor everyone's going to. To fix this? And it's like you're looking for a black and white answer in a world that it doesn't exist. It just doesn't exist. And seeing people have that realization, like, they get newly diagnosed, they find us, they go to this great doctor, they.
[00:50:29] Speaker D: Think they're gonna be fine in a month.
[00:50:31] Speaker C: And then you see the reality of it set in.
[00:50:34] Speaker D: But then we've been doing this long.
[00:50:35] Speaker C: Enough that a lot of people get.
[00:50:37] Speaker D: Better and they leave.
[00:50:39] Speaker C: You know, like, we've gotten to see.
[00:50:41] Speaker D: People at some of the people who host meetups. For now, we have a.
[00:50:45] Speaker C: We have like 25 volunteers that host meetups for us. These were some of the sickest people that we had on our calls that couldn't talk, that couldn't sit up, that couldn't participate.
[00:50:55] Speaker D: And we got to see their progression.
[00:50:58] Speaker C: Of getting better.
[00:51:00] Speaker D: And for our community members to see.
[00:51:02] Speaker C: People getting better is so. Gives them so much hope, you know, like, it's so important to see the whole spectrum that's happening.
[00:51:12] Speaker B: Yeah. I mean, yeah, that's phenomenal what you're doing. And yeah, I'm. That. That's amazing. So again, all the listeners, you know, if you haven't heard of Generation Lime, I mean that this, this is, you know, it's phenomenal organization. And thank you for doing this. I mean, that's, that's. Yeah, thank you.
[00:51:29] Speaker D: And thank you for the work that you're doing.
[00:51:31] Speaker C: Right. Like, there's, there's like a big group of us that are trying to make a difference in, in. When I got sick in 2012, like, there was nothing. There was.
[00:51:41] Speaker D: And there's still.
[00:51:42] Speaker C: I went to a research. I got invited to a research conference recently and there were people showing their research, and one of them started by saying, Listen, 10 years ago, nobody could find a Lyme doctor. That's not the case anymore. Like, that's not happening at all. And you knew who the patients in.
[00:51:59] Speaker D: The room were because they all laughed.
[00:52:01] Speaker C: When he said that.
[00:52:02] Speaker D: Because it's still such. It can be such a challenge to get treatment.
[00:52:05] Speaker C: But there are treatments available now that.
[00:52:08] Speaker D: Didn'T exist 10 years ago. There's information now that didn't exist 10 years ago.
[00:52:12] Speaker C: Like, I had to go to some weird dark corner of the Internet that I couldn't even find.
[00:52:16] Speaker D: And now there are organizations that have reliable information. There are documentaries being made that have good, reliable information.
So it is better now than it.
[00:52:27] Speaker C: Was 10 years ago. But there's still so far to go.
[00:52:31] Speaker B: Yeah. And, and, and the doctors, you know, the, the lime literate doctors that are really good. I mean, the waiting. Waiting time. I mean, some people, you know, I interviewed a few shows ago, I mean, it was like a two year. Yeah. Waiting list. Yeah. So.
[00:52:48] Speaker C: And how much did that first appointment cost? Yeah, you know, like, like the financial aspect of this disease, like, forget the physical and mental and emotional toll, the financial toll of having to be treated for an. I submitted like $65,000 worth of stuff to my insurance the first time around, and they gave.
[00:53:08] Speaker D: They wrote me a check for doll.
[00:53:13] Speaker C: Because. Because my, my, my lab test was.
[00:53:18] Speaker D: New lab test positive, New York state negative. So according to the state of New.
[00:53:23] Speaker C: York, there was nothing wrong with me. And all of my treatment was like, for fun, I guess.
And, and so the financial reality of this disease, like, there are. How many people are sick but can't.
[00:53:37] Speaker D: Get to A doctor to get diagnosed.
[00:53:40] Speaker C: We get emails from parent.
[00:53:41] Speaker D: From mothers in the Midwest who are.
[00:53:43] Speaker C: Saying, like, we can't afford treatment.
[00:53:45] Speaker D: All I know to do is pray for my child.
[00:53:50] Speaker C: Like, we're in the wealthiest country in the history of the world, and we've got so many people who are suffering because they can't afford treatment.
[00:54:00] Speaker B: Yeah.
[00:54:00] Speaker C: And it's. And Lyme disease does not care how.
[00:54:05] Speaker D: Old you are, what color skin you.
[00:54:07] Speaker C: Have, your socioeconomic background, your religion. It does not. It doesn't care where you live, what you've been doing.
[00:54:13] Speaker D: I'm the least outdoorsy person alive. I.
[00:54:17] Speaker C: Hiking woods. Never, never give me New York City all day, every day.
Like, so I would get. I would tell people I had lime, and they're like, what are you? Like, you know, like, traipsing through the wilderness? Absolutely not. I have no idea where I got it.
[00:54:31] Speaker D: No clue. Never will, by the way. We'll never know.
[00:54:35] Speaker C: That'll just be a mystery. That will. I'll take with me to the grave. And. And so, yeah, it's. It's like, it.
[00:54:42] Speaker D: People.
[00:54:43] Speaker C: I wish people lived like they're one tick bite away from being disabled, but most people go, well, it's. That'll never happen to me.
You know, Like, I have friends that, since I went through this, have moved to Connecticut and New Hampshire and Vermont.
[00:55:01] Speaker D: So their kids can play outside.
[00:55:02] Speaker C: And I'm like, are you doing. You know, like, didn't you see? But people don't want to live that way. And I get that.
You know, some people are like, you.
[00:55:12] Speaker D: Really come on strong with the lime stuff. I'm like, yeah, I lost six years of my life.
Put the. Put the bug spray on. I lost six years of my life. Check your kids.
[00:55:25] Speaker C: You know, like, it's.
[00:55:27] Speaker D: It's just not worth it.
[00:55:28] Speaker C: It's just.
And people don't get it until it happens to them, and then they get it. And I wish that that wasn't the case, you know?
[00:55:37] Speaker B: Yeah. Yeah, exactly. I mean, with. I don't know, it's like a hundred, two hundred thousand new cases, I think, per year. And in the United States. I mean, this. Absolutely pandemic. So. Yeah. Well, Jesse, thank you so much for taking this time, and thank you for everything you're doing. And, yeah, I really, really appreciate it.
[00:55:57] Speaker C: Thanks for letting me talk about one of my favorite subjects. I feel like. I feel like I just talked your ear off for an hour, but I. I so appreciate what you're doing. And, yeah, if you're listening to this and you want to Know more information or you want to join a meetup.
[00:56:12] Speaker D: Genlime.Org g e n l y m.
[00:56:15] Speaker C: E.Org we're really easy to get in touch with. We've got a lot of great information.
[00:56:20] Speaker D: Come hang out with us.
[00:56:21] Speaker C: We've got meetups five to seven days a week.
And we're here. And we're here as long as you need us to be.
[00:56:27] Speaker D: We're not going anywhere.
[00:56:28] Speaker C: And yeah, but thank you for what you're doing. Thank you for having this podcast.
[00:56:32] Speaker D: Thank you for letting me talk about Generation Lyme.
[00:56:36] Speaker C: It's. I share my story a lot in the hopes that people see themselves in it.
Because what I needed when I was sick was for somebody to share theirs.
[00:56:47] Speaker B: Yeah. And that's why I do this podcast, is that, yes, I have experts on as well, but to have people that you can connect with and relate with and kind of remove that isolation like you're saying. Also having the hope that there is a solution and there is a way out, even if it takes 20 years, there's still people that have gone through it after 20, 30 some years and now they're better.
[00:57:16] Speaker C: So like all. If I can go from as sick as I was and like, I forgot.
[00:57:21] Speaker D: All the lyrics to my own songs, my short term memory disappeared. I could, I couldn't read one line in a book.
[00:57:28] Speaker C: Like, if I can go.
[00:57:29] Speaker D: I was a vegetable.
[00:57:30] Speaker C: I was, I was barely a functioning person. If I can go from that to now, which is like, I live a normal life, I work, I travel, like.
[00:57:40] Speaker D: I get to do things.
[00:57:41] Speaker C: I.
[00:57:42] Speaker D: If I can go from as sick.
[00:57:44] Speaker C: As I was to, to where I am now, like, I'm not special.
I'm not. I don't have some like magic fair. It literally was just trying stuff until something worked. But like, I did not ever. I did not think I was going.
[00:57:58] Speaker D: To get here for a long time.
[00:57:59] Speaker C: So if I can go from where I was back then to now, whoever's.
[00:58:03] Speaker D: Listening, no matter how bad it is.
[00:58:05] Speaker C: No matter how hopeless it feels. And I, trust me, I know that feeling of hopelessness.
Just keep showing up.
Just keep showing up, please. For yourself, for your family, for your community, mostly for yourself. Just keep showing up. I, I think health is a human right. I, I think like the amount of people walking around just casually with, with.
[00:58:30] Speaker D: Chronic illnesses is crazy.
[00:58:33] Speaker C: And I hope that in the next couple decades we can really shift our health system to one that really prioritizes people being healthy. And yeah, if you're listening to this and you're a patient, I'm so, so sorry. And I get it. And you're not crazy.
You're not. Every conversation I have with a Lyme patient, whether it's on a call or, you know, I get friends of friends of friends putting me in touch. Every call with every line person ends.
[00:59:01] Speaker D: Up with me repeating, you're not crazy. You're not crazy.
[00:59:05] Speaker C: And I know how it's so easy to feel like you're not.
[00:59:10] Speaker D: You're not crazy.
[00:59:11] Speaker C: What you have is an absolutely common, horrible problem.
But it exists and it's real. And there are treatments you can do and there are people working to make it better. Just keep showing up.
[00:59:26] Speaker B: Awesome. Thank you, Jesse. Thanks so much.
[00:59:28] Speaker C: So much.
[00:59:29] Speaker B: Thank you.
[00:59:37] Speaker A: The Information this podcast is for educational purposes only and it's not designed to diagnose or treat any disease. I hope this podcast impacted you as it did me. Please subscribe so that you can be notified when new episodes are released.
There are some excellent shows coming up that you do not want to miss. If you're enjoying these podcasts, please take a moment to write a review. And please don't keep this information to yourself. Share them with your family and friends. You never know what piece of information that will transform their lives. For past episodes and powerful information on how to conquer lyme, go to integrativelimesolutions.com and an additional powerful resource, resource lymestream.com for Lyme support and group discussions. Join Lyme Conquerors Mentoring Lyme warriors on Facebook. If you'd like to know more about the cutting edge integrative Lyme therapies my center offers, please visit thecarlfeldcenter.com thank you for spending this time with us and I hope to see you at our next episode of Integrative lyme Solutions with Dr. Karl Feld.
