094 You Are Not Alone -Jesse Ruben

Yeah, you'll be fine. Everything's fine. You know, it wasn't until I went home for Thanksgiving one year. I lost like a ton of weight, you know, like 40 pounds or something from being sick, all the medicine I was taking, whatever. And I was like gray, you know, like totally washed out. And I walked in for Thanksgiving and my dad's mother came in and she just looked at me and she just started sobbing. She was like, what is going on? Something is wrong. And I turned to my parents and I was like, this is how serious this actually is. But they just couldn't get it. It was really hard.

You know, I think it's hard for parents, especially.

Welcome to the Lyme Voice Network. We are chronic illness warriors, caretakers, and advocates who are overcoming illness in all of its many forms. We created this show to inspire, educate, and encourage you on your path to wellness. We're here to help you put the puzzle pieces of healing into place. Join us and our network of Lyme warriors as we discuss how fighting is a mindset, healing consists of choices, and living is the outcome.

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Lime Voice thanks Invita Medical for the continued support. Please reach them at 1-866-830-4576. Welcome to episode 94 with Jesse Rubin. I am here with my beautiful wife Sarah. Hello. So tell us more about this episode, babe.

So Jesse Rubin is a singer-songwriter. He played at the Lyme Mind Conference, and he has written a number of songs specific to his struggle with chronic Lyme disease. But this is a great interview. This one was done by Jessica Donaldson, one of our co-hosts who we love, love, love.

She's the best.

She's so cute, and I love hearing her accent. But this interview was so fun to listen to when it was being— yeah, recorded. The thing that I love about our show is that we get fed from it in so many ways. Like, we usually listen to each episode multiple times before it airs, and I learned something each and every time. I'm not even exaggerating a little bit.

Yeah, every time.

And one of the big takeaways for me in this episode is, uh, he said, if you're listening to this, you're my hero because you haven't given up.

Yeah, that was a— that was really impactful.

Yeah.

And he talks about, you know, different aspects of treatment and not having a good attitude.

Yeah.

While being there and being pissed.

His honesty. Yeah.

He's like, yeah, of course you can have a good attitude at the beginning, but yeah, because you're years into stuff and so the dynamics change drastically. So I— that's what I really like about this interview is just to acknowledge that you can suffer and be suffering without losing hope. Yeah, that was some of the big takeaways for me. Shout out to our sponsors, tickwarriors.com. Go to tickwarriors.com and use the source code LIMEBOYS and get 10% off.

Yeah, your first time order.

Uh-huh.

Yep. We keep talking about prevention, guys. Ticks are everywhere.

You have got to protect yourself year round. I'm seeing pictures on these Facebook groups of people picking ticks off of their dogs in the middle of winter. You got to get your spray. Go ahead.

Um, another takeaway from this episode is they talk about getting to a place where you can forgive the people in your life who do not get it. And that was something that triggered a lot of conversation between you and I. Yeah, totally. Yeah, because it's— there are going to be people in your life who don't get it, and we are years and years into this, and I've said it so many times, sometimes I feel like we know less than before. Um, but it— that it really is a journey and a process.

Yeah. And it's the same for people around us as well. It's hard for them as well just to grasp it. It's a— it's, it's quite a disease. It's—

so one of our other sponsors is Medical Bill Gurus, and if you have are paying— if you are paying cash out of pocket for treatments, which I guarantee you are if you're listening to this podcast, you need to call them because you could get reimbursed directly from your insurance company and they handle all the paperwork. It is free. You don't pay anything unless you get money back. And what was so funny about Jesse Rubin's interview— it's actually not on air— he said he submitted his bills to his insurance company, $34,000, and they sent him a check for $18. Oh, so if you don't want to get a check back for $18 and you're hoping for more, go to medicalbillgurus.com and talk with Daniel Lynch.

Yeah, Daniel can help you. He can help you.

I think another one of the really big takeaways from this episode is Jesse really encourages parents to advocate for their kids because when he got sick, he was 26. So he said, My parents didn't get it, but I could drive myself to the doctor. And kids don't have that luxury in a sense. Like, kids already don't understand what's going on and if their bodies feel weird or if they're not functioning normally. And it's hard as an adult to understand.

Yeah.

Yeah.

Yeah. At least with you, when I wasn't understanding, you could go ahead of me and make an appointment for yourself. Most kids don't have that ability. They don't know how to make their own doctor's appointments. So I mean, it's really limiting. It's— yeah, yeah.

So there's great stuff in this. Jesse Rubin's really talented. He sings for us on air, and I hope you guys enjoy it.

All right.

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Welcome everybody, Jessica Donaldson again here with singer-songwriter and Lyme activist Jesse Rubin. Welcome, Jesse.

Thank you for having me.

So if you were one of the fortunate ones that caught the live stream of the Limemind Conference, you got to see me gush live. As soon as Jesse walked on the stage and started cracking his jokes, my first comment was, I have to get him on the podcast. He is going to be a great guest. I love his attitude. And I'm sure he's going to play it off like, yeah, okay, whatever.

But yeah, okay, whatever.

But I was totally stoked to see another person in the Lyme community that was kind of a little twisted humor with it because you need it.

Totally.

So give us a little bit of an overview of your journey and what kind of— what your diagnosis is and what it's been like so far.

Yeah, I, I started getting sick on Christmas Day of 2012. I remember that because we went to see— as a Jew on Christmas, you go to the movies and we went to see that Les Misérables movie, right? It was Les Misérables and it was like really long. And I remember being like, I had like a scratchy throat and I was like, oh man, I'm going to wake up sick tomorrow. Also, I hated the movie, but that is irrelevant. And so because I was sick and so I had just started dating my girlfriend at the time and I got this I woke up the next day with a fever and a sore throat, the whole thing. And I was like, oh, I got the flu. This sucks. But then it lasted. It just lasted weeks and weeks and weeks. And my fever was not going down. And I had like, you know, I was up to like 103, 104. And we had just started dating. And I like my really strong memory of the beginning of our relationship was I was just sleeping on my girlfriend's wooden floor because it was like much cooler, you know?

Than the bed.

And that went away. And then after like a month or two, and then I was fine for a couple weeks. And then I started having these weird things start happening to me where I would get really nauseous for no reason. And I would have to like go home and lie down. And that was happening more and more. And I started getting kind of like achy and dizzy and I started going to the doctor and of course they told me I was fine. And then I went back to the doctor. We got all these blood tests. You're totally fine. And I sort of just went on like a downward spiral for the next like 6 to 9 months of just feeling worse and worse and worse and like just feeling like I had this crawling sensation under my skin which wouldn't go away, which was really freaking me out. And I started seeing all these different specialists and nobody could tell me what was wrong, but they all told me that I was gonna be fine. And I went to like 15 doctors in 9 months and finally, I just had a million symptoms and I remember just like freaking out and constantly, I was like doing research online and I finally on some random website downloaded a PDF at like 4:30 in the morning that had like possible Lyme symptoms on it. And it was the first time I saw everything that was wrong with me in one place.

Wow.

So I was like, okay, so I think this is what I have. And then I started asking everyone I know, do you know someone with Lyme disease? You know someone with Lyme disease? Do you know someone with Lyme disease? And I started talking to friends of friends of friends and all these things, and they recommended a doctor's office to me in New York called the Marcin Center. And I I went there and then I basically was there almost every day for like 2 and a half years. And I basically stopped working. I stopped doing anything really except going to the doctor and trying to get better. And yeah, it was a really crazy time.

Is it an inpatient program?

No, it's just a doctor's office. I just like, I was just getting, you know, I was I started on— I guess I didn't start going there that much, but I started on IV antibiotics, and then I switched to— I started on oral antibiotics, sorry, and then I went to IV antibiotics. And, and IV, I was doing 3 to 5 days a week. Um, but I had all kinds of crazy stuff happen. Like, you know, I tried a treatment called, uh, Rocephin, which is like an antibiotic, right? So it's like we started, uh, on the doxy, and then we were going to try Rocephin. Except Rocephin is an offshoot of penicillin, but I didn't know that. And I also didn't know I was allergic to penicillin. So I paid money to teach— to have them teach me how to inject myself with a very large needle. And then I woke up the next day just covered in hives.

Whoa.

I was allergic to Rocephin. And I remember I went back into the doctor's office and I was like, well, I don't feel as tingly or nauseous anymore. Now I'm just really itchy and uncomfortable. And they were— and I was like, you know, is that a good thing? Like, like, if that's the case, I'll just keep— I'll just keep doing this treatment. I don't care if I'm allergic. And they were like, yeah, you, you can't inject yourself with something you're allergic to.

You're—

you'll die. And I was like, okay, so I, you know, I— and then, you know, at one point I was taking like 80— I had 80 pills a day. I had like this huge supplement medicine schedule that was like basically, you know, wake up, before breakfast, during breakfast, after breakfast, in the late morning, before lunch, you know, just the whole thing. I have a suitcase full of medicine in my closet that I like can't get rid of because I feel like it was such a hilariously huge financial investment. And after like 2, a little over 2 years, we basically got to the end of their treatment ideas, and this doctor named Jerry Simon, who works out of that office, suggested we try something that they call the Garcia Protocol, which is a combination of chelation and ozone, and it's an IV, and I did it twice a week for 3 or 4 months and totally saved my life, and I have no idea why, and I don't care, and I—

that's how I am with anything that works. I do not care why it works. Yeah, if it's a placebo effect, Who cares? I do not care if it works for me. Yeah. Yeah.

I, you know, what I tell people about it is like, I don't know if I believe in God, but I super believe in chelation and ozone.

You know, I like that.

It's just terrible. Just— and so hold on a second. Jen, Jen, what are you doing? That's okay. Sorry, I live in an apartment in Brooklyn and my wife is making noise in the kitchen.

Oh, it's totally fine. We have— everybody's been from New York. Lately that I've interviewed. Every single one.

That's a sign doctors are— you should—

yeah, it is. They're doing some great things up there. Y'all really got a hold on the Lyme activism. I've seen a lot of stuff coming great out of there.

We're trying. Where are you based?

I'm in Mississippi. Lyme Voice is in Colorado, and then I work with another nonprofit, Lyme Warrior, that's in Virginia, and that's my long-term plan to get up there and start my own little commune or something, right? Yeah, I want to be a cult leader without the Kool-Aid. Yeah, sorry, what did you ask me? You want to join? I'll send you an application. No, you're fine. So fighting is not necessarily a physical act. I mean, oftentimes it is, but it's all— it's more a mindset. What are some of those, outside of treatments and medications and things, what are some of those things that you you had to change within yourself to enter remission and healing with Lyme disease?

So I wish I had a good answer for this question, but like, I was not one of those people. You know, I, you know, I saw a lot of the same people every day when you're going to get that many IVs. And there were, there were a lot of people there that were like, I'm sick now, I probably won't be forever, I'm just going to stay positive and everything's going to be great. That was not me. I was like, this sucks. I hate this. My life is over. I'm not getting— just because you start that way and then day after day after day after day after day of not wanting to go to bed because I know I'm going to be worse in the morning and then waking up and just feeling that wave of fatigue Nausea, like you just feel like you're going insane. And so, you know, and when people ask me like, what was Lyme like for you? One of my answers is like, Lyme disease takes everything about your life that makes you happy and takes it away from you. So like, because I had all these— I had really bad brain fog and my short-term memory was really bad and I couldn't concentrate, so I wasn't watching movies. I would put Netflix on and then just like, I would watch it and completely forget what I had watched. So I wasn't reading books, I wasn't listening to music. I didn't pick up a guitar for a really long time, like months at a time until I would have these brief glimpses of my brain fog would sort of clear away for a couple of hours and I would be like, oh my God, I can play. And then it would come back and I just, It was just so frustrating and so upsetting and so difficult. I think the mental, besides the physical aspect, the mental aspect is so hard to deal with. But because of all the physical stuff, I didn't even want to deal with the mental stuff. So my parents were very big on like, you're depressed, you're just depressed. There's nothing wrong with you. You're just depressed. And the way that I responded to that was like, with treating what I have for depression is like cleaning the dishes while the house is on fire, right? Like, there's a time and a place for that, but there's a bigger issue here. And so I'm sure that I would have benefited from some of that medication at the time, but I was so focused and so obsessed on physically getting my symptoms to disappear that the mental stuff I couldn't even handle.

So did you have to tackle that kind of after your physical body started healing? Like it was just too big of a, of a mountain to climb almost to get your physical up there and your mental at the same time?

Well, so you think— so I would have this thought in my head like, oh, if I, you know, once I get better, once my physical symptoms go away, you know, my life will get better. Once my physical symptoms go away, I'll be happy. Once my physical symptoms go away, everything will be fine. And then I was really fortunate to find this treatment that worked and put my physical symptoms in remission. And then I was like waiting for this like wave of joy to come over me. But I had gone through so much over the previous, you know, 3 years. I was constantly worried, especially for the first year, like that for no reason whatsoever, all my symptoms were going to come back. I was like constantly waiting for the bottom to drop out. I'm a little better now, but like being outside, being on grass, being in rural areas like that, that was like, used to drive me crazy. It still does. But I'm like, I also want to be like a functioning person in the world. You know, like one of my friends just got married in upstate New York, like in a field. And I was like, wow, what a— Why would you do that? I know. Yeah, but she did. And so I went and I was like covered in Ranger Rally, Ranger Ready tick repellent, and I brought a bottle and gave it to everybody, you know, like—

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For nearly 2 decades, Invita Medical Center has been leading the way with the latest in personalized treatment options designed for patients dealing with Lyme disease complex. At Invita Medical Center, they offer a team-style approach and the latest technology regarding treatment and testing at an unmatched radical love and care environment for their patients. Call to speak to one of the patient care coordinators today to learn why hundreds of patients choose Invita Medical Center each year. You can find them online at invita.com.

Ready Tick Repellent. And I brought a bottle and gave it to everybody, you know, like But it's hard. And I was so sad and so angry for everything that had happened. And there were people in my life that I had taken a lot of my upset out on, my girlfriend, now wife, being at the top of that list just because she was around and I was really unhappy for a long time. Not because of anything she did, but just because of what was going on with my body. And I couldn't participate in life. I couldn't participate in our relationship. So it was scary to sort of pick up the pieces and put my life back together and figure out what that looked like and what that was going to look like. And it took years and I still have like, my anxiety is way worse now than it was before I got sick, way, way worse. And I have to take stuff to sleep every night because I just, I cannot fall asleep at all. And you know, yeah, it's challenging. For sure.

Yeah, it is. And a lot of things that we, we don't even realize when we're going through the sucky pit of Lyme, what this is doing, you know, to our psyche. It is the sucky pit.

Totally.

I mean, it just—

it's so funny. So true.

I mean, it is. I mean, and you don't even realize, like, I mean, obviously you see your body degrading. Like, for me, I had seizures. When you were talking about not being able to not process what you're watching on TV. I went through a time period where I wasn't able to even watch it because the lights and the movement would trigger a seizure-like episode for me. So I went— I still haven't watched a movie in theaters yet. It's been over a year now. And but I'm to the point where I can watch things on TV, you know, and stuff like that. But you never even realize like what a number that's doing on your mental state, the PTSD that you're developing. And I never associated PTSD with really anything outside of veterans and sexual abuse victims. That was kind of my, my experience. But I can see it in myself when little things happen, like, like your field incident. That's a totally PTSD trigger for someone with Lyme disease. My sister-in-law a couple of weeks ago picked a tick off of the dog and threw it in the yard in front of me. Oh my gosh, I thought I was going to absolutely rip her head off. And just like, I was like, okay, I have to resist the urge to go looking through the grass to find that one tick now.

But there's gonna be a time— like right now to us it's like crazy that somebody would do that, right? But because the seriousness of it and the scope of it is not general information, there's gonna be a a moment where either the government decides or someone comes up with a treatment and they're gonna make a bunch of money. Something's gonna happen where we're gonna just hit this point where everyone's gonna know and everyone's gonna be freaked out and everyone's gonna, like, that just stuff just won't happen anymore. But unfortunately—

I totally agree with you.

Yeah, until we get to that point, we're gonna have to just watch these people basically self-sabotage in front of us, you know?

Yeah, and you said something at the conference that I really, really identified with, that a few years ago, not that Lyme is cool, but people didn't know about it.

Oh, it's way cooler now.

Yeah, it is. When I first got diagnosed, there was no such thing as Lyme voice and Lyme warrior and all of that. Like, I just had this weird disease that no one else I knew had. Yeah. And then it's come a long way.

Like, my mom started sending me like People magazine covers with, uh, Kelly Osbourne and Shania Twain. And, you know, like, you start seeing it in the news. But it's like a very hip disease now for celebrities to have, but it's not actually. It's just a disease that a shit ton of people have.

Right, but they're just now realizing that it's out there. It's taken this long for it to hit mainstream. Maybe it's even part of the changing climate within the— I don't want to coin it conspiracy because by God, it's freaking true, but it's the whole climate around Lyme disease in and of itself is changing. Well, we're seeing more unity too.

We're seeing— so I— one of the things I said at the conference, which I think is really true, is like Lyme patients are finding ways to heal themselves because they have to, because no one else is going to do it— is doing it for them, you know. So because I think you have this really backwards cycle of like, well, there's not enough funding for it because not many people have it. Because the test isn't accurate. And it's like, well, we can't get funding because there's not that many people have it, but not that many people have it because the test isn't accurate. But why do we need to develop a test? Because not that many people have it. And it's like, this is the dumbest thing I've ever— so I just— it's just so sad to me because I get it if like you're a doctor and one— every single patient you have fits into these neat little diagnosis boxes, and then you have one who says a bunch of crazy shit you've never heard before and you're like, "Well, that's gotta all be in your head. Have a nice day." But I would imagine that these doctors are seeing, especially on the East Coast, are seeing patients like that over and over and over and over again and every time they can't figure out what's wrong when all of this, when they have this giant amount of symptoms that are the same and all of these, it's just, it can be very frustrating to me.

It's infuriating. It really is to see that the suffering, the needless suffering, that if it was a disease that there was absolutely no cure for and there was no people going into remission, if this was just a death sentence, you know, it would be a totally different thing. But people can get better from this. Why in the hell are we not getting people better from this? Like, it's not that difficult. I mean, it's a difficult disease, yes, 100%. It manifests in so many different ways. I can understand the puzzling nature. But for— if I was a doctor and I had a patient that came in and had a laundry list of symptoms and was going, okay, it's affecting your brain, but your knees are swelling too, you've got brain fog, you're fatigued, nauseous, first thing that would come to my mind, oh, you probably got Lyme disease. If you come in with a laundry list of symptoms, you got Lyme. Like, I'm sorry.

So I think part of it is the approach to Western medicine, right? So like, you would have— it's very common for like, for a person with all these symptoms, they're like, well, I'll go to a knee specialist because my knees are the size of basketballs, right? And then they're going to try and treat the knee and not take into account the underlying cause. So like, unfortunately Lyme is a systematic illness and we in Western medicine, we treat individual symptoms without taking into account the underlying cause, which is crazy to me, you know. But also it's more complicated. But so, so a big part of it is like educating. For me, I'm very big on patient advocacy. So like, for me, like If my diagnosis time went from 9 months and 15 doctors to 1 doctor, I don't know how much quicker I would have gotten better, but I'm sure it would have been some. And there are people where it takes 2, 3, 5, 10 years for them to be diagnosed.

10 years for me.

Totally. And that's crazy to me.

I have more doctors in my phone than I have people that aren't doctors. It is ridiculous. You get to D on my phone, it's just doctor, doctor, doctor. Doctor, doctor, doctor, doctor, doctor. It's insane.

So how can we educate medical professionals so that when they see a patient, when a patient comes in, like you said, with a laundry list of symptoms that maybe aren't all the same, but there's some that line up, they just do. How do they not just immediately go to that instead of like, well, I don't know, like maybe—

Maybe you're stressed.

Yeah, of course I'm stressed.

Of course, look at my body. I am stressed.

My friends and I used to get together. One of the things that did really help me was meeting— because it feels so isolating. Of course, the irony is from my apartment in Brooklyn, if I had gone a mile in any direction, there were probably 10 people who were dealing with something similar just because there's so many people that have it in New York. But it feels so isolating. Nobody, no one in my life understands what's going on. My family and friends think I'm nuts. Like, nobody is telling me that it's normal. What's happening to me is normal. And so I found through my doctor's office, I got invited to a dinner, and through that I met a group of people that were around my age that were all dealing with a similar thing.

Wow, that's cool.

That to me was such a difference in that moment because first of all, I was 2.5 hours late to this dinner because my mom made me go to this weird doctor in Pennsylvania who told me that he knew exactly what was wrong and he turned out to be completely out of his mind. I have all my stuff and it's the winter. I've got all these layers on. I'm sweating. I'm annoyed at my parents. I take off all these layers and I walk into the room. See all these people and I was like, "Oh, you guys all have Lyme?" And they were just like, "Yeah, come sit down." And it was such a weight, just in that moment was such a weight, you know, and throughout that process they were— we were such a great support system for each other and we would get together every couple weeks and, you know, we still have like group texts all the time. And I mean, but for a while it was like every single day, you know, and I think for most of us have really gotten better in the last couple of years. And so it's been great to see one of my most amazing— I got married last year, and one of the most special moments for me at my wedding was being on the dance floor with all of them and just doing a normal wedding, you know, just like— yeah, because 5 years ago that never would have happened, you know. So it was really special to see the, the growth that we had made. Um, and so I think community is, is such a huge part of of getting through it. And I won't even say recovery, but just continuing to push, you know, like just to live through it.

Yeah.

And I, I, because of what I do and I talk about Lyme at every show I play, and inevitably somebody in the audience either has it or their friend has it or something. And I talk to Lyme patients all the time that I have never met before, and it usually just comes down to them sharing their stories and me telling them that everything they're going through is normal, and then me repeating, "You're not crazy," over and over and over and over again. Because that's one of the biggest problems is when you have a really smart, well-respected medical professional confidently telling you there's nothing wrong, it's really hard to be an advocate for yourself.

It really is. I think this is a good segue into your song that you played at the conference that almost made this stone heart cry. The "You Are Not Alone" Anymore. Can you want to tell us a little bit about how that got started? Because I really like the story that you told behind it.

That's good, because I don't remember what I said at all. I, I started writing— I think I started writing this while I was sick. I don't know, I just— when I got better, it was like, okay, what am I gonna write about now? And there wasn't anything to write about except my experiences. And I just find that— oh, this is what I said. So many people are suffering all the time, and a lot of them obviously physically, and a lot of them have Lyme disease, but a lot of people are just carrying upset and guilt and jealousy and all these things around all the time. And the more that I talk about my experience with Lyme, I the more people open up to me about what they're dealing with. And I think it's really important to not pretend that that's not happening or to pretend that that's not happening. And so this— I wrote "You're Not Alone Anymore" kind of for me, like as a therapeutic exercise for me. And my wife and I got invited to attend a conference in Amsterdam for patients with Lyme disease. And they asked me if I would play, and I had all these songs I was gonna play. And then right before I went on, I was like, Maybe I should try You're Not— maybe I should play You're Not Alone anymore and see what happens, you know? And the response was really amazing. And it's a really special song to me. I don't get to play it that often because it's— I only want to play it in, in like safe spaces where people sort of understand, you know? But anyway, I'll stop stalling. I'll play it for you.

Okay, go ahead. I'm really looking forward to this. This is gonna be a special treat for our listeners. Live music, guys.

I'm gonna take my headphones off so I won't be able to hear anything.

Okay.

She spent her days alone, alone in the dark, just quiet and sitting. She was so close, so close to giving up, so close to quitting, and can't understand why her hands won't stop shaking. The worst part of all was they thought she was faking. When you're begging For help, and everyone you tell calls you selfish. And when you need someone there, but everyone who cares is helpless. She said, I know what it's like when there's no end in sight, and it feels like you'll never be cured. I know how it gets when it doesn't make sense, and each day is worse than before. Yes, I know what it feels like. So you're not alone anymore. She lost a year from this. A year of her life that got stolen and taken. She was so sick. She couldn't remember her favorite places and prays every day for the pain to be gone. The worst part was when they said there's nothing wrong. When you're begging for help and everyone you Hotel calls you selfish. When you need someone there, but everyone who cares is helpless. She said, I know what it's like when there's no end in sight and it feels like you'll never be cured. I know how it gets when it doesn't make sense and each Today is worse than before. Yes, I know what it feels like. So you're not alone anymore. Yes, I know what it feels like. So you're not alone anymore.

Oh, I hope y'all enjoyed that.

There we go.

Thank you so much for that. No, it's totally fine. Thank you so much for that. That— the one part in there that gets me every time you sing it is, um, when you feel like there isn't a cure, when you're not gonna get— like, that whole feeling of you can get so stuck in it, and it doesn't matter It doesn't matter if you are an upbeat person and one of those, I won't use the, I almost used the phrase I use off-field for it, one of those inspiration people that are just the bubbly and all of that. It doesn't matter. There's still gonna be those days and those times where you feel like this is just my sucky life now. And that sucks.

[Speaker] I remember it was actually right before I got better. My dad called me and he was like, listen, you know, we've been talking about it and no one wants to say this to you, but, you know, like, you might just need to learn how to, like, go on with your life dealing with this. And I was like, if you had any idea, if you had any idea what this was actually like, you would never say that. He was trying to be supportive, but that would never even be a thought. And my mom used to say, "Jesse, I feel like you're just spending so much time trying to convince us that there's something wrong with you." And it was only 2 years later after I got better, and it took me a really long time to forgive my parents. I was really mad at them for a long time. And I finally, I remember calling my mom and being like, I just had a thought, like I never lied to you about anything. I never got in trouble when I was a kid. I never did anything bad. We had a really great relationship. Like why would I be lying about this?

Right.

And part of it was like they really had put their faith in these, like in like these old doctors in Western medicine doctors. And then part of it was, especially for my dad, like he just could not handle the reality of it. So for him, it was just like easier to just check out and be like, yeah, you'll be fine, everything's fine, you know. It wasn't until like I went home for Thanksgiving one year, I lost like a ton of weight, you know, and I like 40 pounds or something from being sick, all the medicine I was taking, whatever. And I was like gray, you know, like totally washed out. And I walked in for Thanksgiving and my dad's mother came in and she just looked at me and she just started sobbing. She was like, she was like, what is going on? Something is wrong. And I turned to my parents and I was like, this is how serious this actually is. But they just couldn't get it. It was really hard, you know.

I think it's hard for parents especially that— because my parents have seen me, uh, deal with health problems my whole life, and I was in remission for about 17 months. So in their head, Lyme disease was something that I just— I would eventually get better from. And I'd already I had healed before, so of course I would. I knew how to do it this time. So almost 2 years into my relapse, and I'm about 40%, but there, you know, it's still this struggle to— I know I got better before, but guys, it's not that easy. Like, yeah, I mean, it's really not.

But that's just, that's just a matter of education, right? Like, when I— right, when I, when I left the Marston Center for the first time and called my mom, and, you know, I was like, they think I have this. She was like, oh, thank God it's not cancer, right? Like, you hear that so often. And on one hand, absolutely, and on the other, I was like, no, that doesn't mean that we're done, you know, right? So it's— yeah, that's really common.

Personally, and I've said it before, I went through a non-Hodgkin's lymphoma diagnosis and had 2 surgeries and all of that to remove some tumors in my chest before my Lyme diagnosis. Hindsight, I think it was Lyme disease that had kind of triggered this shutting down of my immune system, especially since it was lymphoma. If it would have been a different cancer, I would be more prone to just think, okay, I had the breast cancer gene or what have you. But with this one specifically for my lymph nodes, it really makes me think that it was Lyme then. And I can honestly tell you, being somebody that's gone through both, I would rather go through cancer because the community—

You can't say that to people.

No, you can't. I can because I've done both. It's like a fat person calling another person fat. It's okay. But because of the community, because when, when I had that diagnosis, I went to the clinics, I went to West Clinic. There were people that, you know, there were volunteers that knew what you were going through, and they were so kind and so compassionate. I never had to explain why I didn't feel well. I didn't have anyone questioning if I was faking it. Nothing like that. Like, that part of it, heck yeah, I'd choose that over the way that Lyme is treated.

We're only going to get there, right? Like, there's no way— there's no way we can't, because eventually there's going to be so many people that, like, you can't ignore it, right? There's just going to be a tipping point for that. There has to be. There just has to be.

Well, I mean, there was the projections they said at the conference that over a million people within 7 years are going to be diagnosed with Lyme disease.

Yeah, not including the undiagnosed people who don't know.

Right.

And also it's more than that because it's 4— it was 428,000 2 years ago and it's only going up.

And with the inaccurate testing, my goodness, there could be a million people diagnosed, you know, that have it every year that are not diagnosed.

I think it's more, but I'm not basing that on anything other than everywhere I go I meet people who are sick.

It's, it's tons of people. I mean, you never— once you get involved with the activism side of it and the advocacy, you realize It's everywhere.

But also, like, so I went to Chicago to play at a Lyme conference, and I was with the head researcher for Global Lyme Alliance and also one of their big fundraisers, like donor support people. And I was saying to them, like, you don't understand, this is everywhere. And they were like, yeah, totally, we know. And I was like, no, no, you don't understand. So we called an Uber, and I was in the front seat and they were in the back seat, and I turned to the driver because she asked where we were going and we told her and I said, do you or anyone in your life, like, are you tired all the time, not feeling well, fevers, headaches, nausea? And she was like, oh yeah, like my sister was diagnosed with lupus and my cousin was diagnosed with fibromyalgia and this other person was diagnosed with childhood rheumatoid arthritis. I turned around and I was like, like, see? And I was like, has Lyme disease ever come up in your— in amongst your family? She was like, nope, never.

I even brought it up when I was in the hospital the first— actually, the second surgery I had to, um, test the tumors. I brought up Lyme disease and I was like, hey, do you think it could be Lyme? I read this article, you know, and it sounds a lot like me. And the doctor literally laughed and said, it's not this far south. Yeah, and I had just moved back from Washington State, New York State, and Pennsylvania. So come on, I lived in Pennsylvania and New York State. Like, tell me I was not the way that it was just— but I mean, this was, oh good God, probably 15 years ago, so it was foo-fooed away much quicker then.

But that's just a doctor literally not knowing, right? I don't— right, I don't think that doctor is a stupid person.

No, it's a— it's an ignorance thing. It's just the lack of knowledge. It's not that it was malicious or anything like that. I don't think that most of the doctors have it out for the Lyme community and just don't want to diagnose us. They just don't know.

Yeah, so I think training doctors is really important. And then also a big thing— so I'm part of a group called Generation Lyme, and our goal is to just basically build a community for young people, so teenagers to young professionals. One of the things that I've really experienced, especially because I work a lot with schools, is young people will be sick, but they won't know that they're sick. They'll just think that, "Oh, this is what being a teenager is supposed to feel like," or, "This is what going through puberty is supposed to feel like," or something. Or they do know something's wrong, but their parents don't think there is. I got sick when I was 26. So my parents could think I was crazy, but I could still go to a doctor. When you're 13, 14, like, you can't go to a doctor without your parents, right? And so it's really important to educate parents, especially in places like Pennsylvania and New York and Connecticut and everywhere really, because that, that does a major disservice to the children because their parents are ignorant and then they don't want to admit that there's something wrong.

Right.

But I also like, you know, I got married last year. I'm 33. My wife and I are gonna want to have a family at some point. And like, the stuff that keeps me up at night is like, am I gonna give this to my kids? Are my kids gonna have this? How am I gonna let them play outside? How, like, how am I gonna act? Like, how am I gonna do that?

How?

I'm gonna have to, but how?

I don't even let my cats play outside, so God help if I had any children.

That's really scary. And I, yeah, I'm literally hoping that we just like figure this stuff out by the time we decide to start having kids.

I think we're a lot closer after talking to some of the researchers and scientists we have lately. I think we are a lot closer than we have been ever. I really do. There's some great research coming out. Speaking of, where are you getting your inspiration lately? What music's motivating you? What books? Are you cognitively there where you're reading?

Oh yeah, yeah. Okay, I've been reading a lot recently actually. My My high school friends and I are doing a book club for the new Malcolm Gladwell book, which is called Speaking to Strangers, which was really interesting.

I actually just— I'm like about halfway through with that one.

Very interesting.

It's good.

I've been listening to a lot of musicals recently, actually. So one of the things that I have been working on for the last year and a half is a musical based on my Lyme experience and just how that impacts not only me, but other people and that story and that journey. And so I've been listening to a lot of Dear Evan Hansen, which I'm obsessed with, and Waitress, the Sara Bareilles musical, because I really think that it's a great time to start telling these stories. And yeah, I just want to impact— I would just want as many people as possible to see it so that I can try and literally just save people's lives, you know.

So I'm really, really geeking out over this idea of a Lyme musical. Like, you just kind of threw that brilliance out there like it's no big deal, but hang on.

But that's the question, is like, would it be better if I didn't call it Lyme and if I made up some random name for a fake disease and did that?

Right.

You know, and that's the world that we live in, is like— but then I also kind of like the idea of people writing it off because then I can yell at them, uh, and that would make me happy. But that was a big thing. Like, do I call it Lyme or do I make up some other name so that it doesn't get political? Or I don't know, that's way far down the road, but it's something that I've been thinking about. But I just— but it's not just like, yeah, yes, it is about Lyme, but it's like just so many people are dealing with stuff. And, and it's also about the impact that it has on other people, right? Like, my— what one of the most amazing things that has come out of my sickness is when my wife and I get to present together at a Lyme conference and people— me saying like, I used to be sick and I'm not anymore— there you can find people that do that. For my wife to stand up there and for us to be up there together and be like, everything seems great now, but it was a total shit show for a really long time, and it wasn't always great, and it wasn't always pretty, and and we fought a lot. And that for caregivers is amazing because it's really hard to be a caregiver too. It's hard to be a parent. It's hard to be a loved one, boyfriend, girlfriend, significant other. I mean, I tried to break up with her like 100 times. Our relationship was like me being angry and her bringing me dinner and me yelling at her and me just being unhappy. I don't know. I just think it's important to— so if I can in the show also, if I can in the musical show how it impacts other people, you know, it takes a lot of people. It took a lot of people to get me through that. You know, a lot of people suffered and I missed out on a lot of really important things and I ruined a lot of really important things and I didn't care. Because I was so self-focused because I had to.

Well, you're, you're in such fight-or-flight mode that you can't— I mean, I didn't have the energy. I just— when I got sick again, I completely disappeared off the planet. I was working at a pharmacy and I was bartending on Beale Street and just having a freaking blast, going to nursing school, the whole nine yards. I got sick again and the rug was pulled out from under me. Total panic mode. Just stopped everything. Okay, so that part of my life is all over. I have to focus on this right here, right now. And it's all I had the energy to do. Yeah. And it just— it happens like that. It's really cool to see somebody else that has sustained remission though. How long have you been in remission?

Yeah, since like, um, the end of 2015.

That is awesome. Yeah, that gives me so much hope. So much, because After going through the thick of it for about 10 years and then getting 17 good months and then to get sucked back in for now about 2 years, it's really refreshing to see somebody that is 4 years post. Yeah, because you don't, you don't get that a lot.

I mean, on Sunday I'm gonna run the New York City Marathon for Lyme disease research for the 4th time, right?

Like That is amazing. That is absolutely amazing.

And I'm not as fast as I was before, but it's— to me, that— it's like such an honor to represent the Lyme community because there are so many people who can't even get out of bed, let alone—

right, like, there's no way I could run it.

Exactly. Like, the idea of doing that when I was sick was like the furthest thing from my mind. So for me, it's really an emotional day too. But yeah, I've been really fortunate. And my— yeah, for the most part, I'm— I feel great. I mean, I'm still a mess, but aren't we all though?

I mean, I feel like— I feel like if I ever get quote normal, there's gonna be some problems. Like, I just don't think that my brain will function normal.

Yeah, you know, because I remember a big part of it was like, oh, I just got to get my life back to the way it was before. I just got to get my life back to the way it was before. But you're not the same person anymore.

You're not at all.

So it's— and I remember having to give that up was very difficult because I really liked my life in 2012.

You know, I have a time period of my life that's been on a pedestal, and it's about a year, you know, like a year time period where the, like, peak physical condition, was working out all the time, getting to go— I could actually shower and then go out and not be too tired. It was amazing. You know, and you have to get through that process where you can— whatever time period in your life you built up on a pedestal, the one that's coming can be so much greater. Yeah, like, I mean, getting to travel around and talk to different Lyme conferences and your music and things like that, that's awesome. I really hope you do the musical thing. I am stoked about that. I actually know somebody. Yes, and I actually know somebody on Broadway right now, so I will definitely get you her name.

There you go.

She's a very talented young woman.

Awesome.

Um, but it was such a joy to speak with you, Jesse, and I loved— I knew this was going to be great. Love your personality.

Thank you.

Much love. This was awesome. Thank you for having me. Is, um, so how can people get in contact with you? Let's drop some of those social media handles.

Yeah, I'm super easy to find. Jesse rubin.com, Jesse Rubin on Instagram and Twitter, Jesse Rubin Music on Facebook. I play shows all the time. I talk about Lyme at every show. I am so amazed by anyone who's listening to this. You're my hero because that just means you haven't given up yet, and I think that's amazing. And I just really hope that we can move the move the cause forward and make a big difference in the next couple of years. And one of the things we got— I got interviewed at the conference, and it was like, where do you hope to see the Lyme community in 3 years? And I was like, I hope everyone's just better and we don't have to deal with this shit anymore, you know?

Right. I wanted to get to a point where people say, I had Lyme disease, now I'm better. Where it's just like having the flu, like, yeah, I had Lyme disease, yeah, no big deal, I'm good now. I wanted to get to that point, and together we're gonna get it to that. I mean, you cannot— the, the strong voices that are coming out of the community and rising lately, especially in the last 3, 4 years, you are not going to be able to silence those people. Number one, because they're pissed off and fired up and ready to take on the world. And number two, you can't ignore groups of people like this together. Yeah, you can't.

Totally.

So I appreciate all that you're doing and look forward to your musical and more music and everything to come.

Well, thank you for having me. You're awesome. And thank you.

I can do—

let me know.

We will, definitely.

Good.

Hey, Lion Voice listeners, we love bringing these episodes to you every week. If you would like to help us and support us There's several ways you can do that. Those are all listed at LymeVoice.com. And if you look there, there's ways you can donate even as little as $1. Any would be appreciated to help continue to get the message out, to help fight, heal, and live. Thanks again. Hey, Lyme Voice warriors. Just wanted to tell you about our friends over at Oval Dogs Coffee. They're a family-owned roastery right in Rio Rancho, New Mexico. Oval Dogs Coffee uses some of the best coffee from around the world, grown by dedicated farmers. Oval Dogs Coffee cares about people and the amazing things that people can do when they're affirmed, nourished, and inspired. Learn more at ovaldogs.com. Go to ovaldogs.com to order your coffee and have it delivered right to your door. Oval Dogs Coffee, loyal to the cup.

Hi guys.

I want to let you know about a book I wrote called Little Bite, Big Trouble. And I'm going to read a review that recently came in. This is from Carolyn, and she says, thank you so much for writing your book. It has become the means by which I have explained Lyme to my 4-year-olds. They ask for it to be read as a bedtime story over and over again and love that the mama birdie does yoga and juicing like their mommy. I can't thank you enough for writing this book. It has helped my family so much. You can find it today at Amazon.com, Little Bite Big Trouble. Disease is contrary to life, therefore wherever disease exists, life must also fight to exist.

Good job fighting, Lyme fighters! Keep it up, we'll see you next time. LymeVoice contains general information about medical conditions and treatments.

Documents.

The information is not advice and should not be treated as such. Okay, Lincoln?

Okay.

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

Okay.

LionVoice makes no representations or warranties in relation to the medical information on this podcast. You must not rely on the information on this podcast as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about your medical matter, you should consult your doctor or other professional healthcare provider. And for you, you consult your parents, okay? Okay. If you think you may be suffering from, from any medical condition, you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this podcast. Got it, Lincoln?

Got it.