108 Fighting For A Cure with Lauren Lovejoy of Lyme Warrior and Suzanne Burden

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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Hello, warriors. This is Suzanne Burton on Lime Voice Podcast. This is my time to be interviewing, and I am so excited to be here. There's good reason for that. It's because a couple of years ago, I was in a boat that a lot of us find ourselves in, and that is laying in bed in this room that I'm podcasting from today and listening to Lyme Voice Podcast. I was very sick with Lyme disease, not sure I was gonna make it, and And so it was a really intense time in my journey. And I just remember listening to Aaron and Sarah Sanchez describing pulling themselves up and out of the Lyme disease hole and saying to my husband, listen to this podcast. I think we might be able to do this. And so here I am interviewing someone else on the very podcast that gave me enough hope to just put one foot in front of the other for another day. And so I just have like this kind of full circle moment going on presently, and I just feel joy and gratitude in my heart about that. And I want to let you know, I am not healed yet, but you don't have to be healed to be healing and to feel whole. And so I do feel whole again, and I am on the process of healing. And so we're really grateful that you're here with us today, whether you are a Lyme patient a caregiver, this is the place that you come when you want the real scoop about what it takes to get through a very misunderstood disease and that it is possible to do so. And we can align our minds to fight and to heal and to live. And we're going to do that again on today's podcast. It's really fun because for the first interview that I'm going to do today, I get to interview a friend. And you're going to find out that in the Lyme world, as you're healing and you meet another patient that is healing from Lyme disease, that you probably become friends in about 5 seconds flat. It doesn't take very long because you're like, oh, this person gets me. And so my friend Lauren Lovejoy from the Lyme Warrior Foundation organization She gets me and I hope I get her as well. And she's here with me today and our stories have dovetailed in a way that only they can dovetail probably in the Lyme disease or chronic illness world. And so I remember again being sick and seeing the Lyme Warrior Foundation on the internet and thinking, who is this Lauren girl? What's going on here? She must be really brave to be out there doing such good work in the world. And then Lauren has actually started an Airbnb, which we'll talk to her about in a minute. And my husband David and I went out there a year and a half ago. She was running a special for Lyme patients to stay over the holidays, and we went out there and sat down with her and her boyfriend Eric. I will never forget the conversation we had in your kitchen in the Airbnb because it was like my husband immediately looked at Eric and was like, oh my gosh, you're a caretaker too. You love someone with Lyme. And then I looked at Lauren and she looked at me and we were like, oh my gosh, you're really sick too. You understand. And it was like we just kind of held up a candle for each other. Of Hope. And so that's the backstory, folks. I know it's, it's quite a backstory. Lauren, welcome to the Lyme Voice Podcast.

Thank you so much. Thank you guys for having me.

It's about time we have you on the podcast because of all of the, the amazing advocacy, uh, work and, um, just kind of being an example of what's possible in the world of healing, um, from Lyme disease. So I want to go ahead and read your bio right now, and then we're going to get into an interview where we will talk about everything from your own healing journey to the advocacy work you're doing and how to balance going back and forth between healing and advocacy. From grad student and workaholic to bedbound Lyme patient, Lauren started Lyme Warrior 4 years ago when she learned the struggle of Lyme firsthand and knew she had to help. Lauren holds a master's in analytics and has years of experience in promotion and the legal fields. She is working to empower those with Lyme disease and help others to join together to make change while still fighting her personal battle with Lyme disease. To date, Lyme Warrior has given over $70,000 to Lyme research, Lyme patients in need, and shipped over 300 Kids Smile Boxes to children suffering from Lyme disease. Lauren lives in Virginia with her best friend and teammate Eric, where they run an Airbnb and a regenerative agriculture farm. I bet you just want to know Lauren Lovejoy now, right? That's quite a bio. There's a lot of fun things and inspiring things going on in your life, Lauren. So thank you.

Thank you.

Yeah, I— you know where we always like to start on Lyme Voice when we have a guest on is to say, hey, how did Lyme disease intersect with your journey? Because our personal stories of healing are what really inspire each other to keep going on the journey. So could you look back for us? I'm not even sure how many years it's been since you've known that you had Lyme disease, but could you backtrack and share that story with us? I'd love to hear it.

Yeah, my story is a little bit different than others that I didn't have a slow decline. I, in about 2 months, went from living an average normal 20-something life to being practically bedbound. And it started with panic attacks and vertigo and dizziness. And of course, those are symptoms that they go, we have no idea what's going on. And I had no recollection of being bit by anything, no start. So I just all of a sudden in 2 months, my life started seriously declining and I couldn't get answers and just had to keep seeking as everyone does, doctor after doctor after doctor until I just got lucky enough for somebody to— I actually had 2 negative Lyme tests from a traditional doctor, but I finally completely by accident ended up in a Lyme literate doctor's office appointment out of desperation for answers. And that's where I got my diagnosis almost 2 years ago. 2 years after becoming sick, and I was completely bedbound, and my entire life had gone from that of a traditional something, 20-something, to bedbound, and my sole job was looking for answers of what had changed my life.

Wow. Yeah. I mean, that is— it's pretty quick. It's pretty quick.

It was very quick and alarming.

Very alarming in your 20s, especially. I know Sarah and I had a much more gradual type of a decline. And so it was almost like we would excuse our symptoms, like, oh, so what, you know, you have chronic fatigue and fibromyalgia and this and this and this. But yeah, a 2-month swing like that in your 20s is really like a hard hit. And so you— that's amazing that you found the Lyme literate medical doctor. This sounds like in a timely manner.

No, no. So I was not a very good patient. I would go to a Western doctor and I would say, this is what's going on. And they'd say, well, you have anxiety and depression. And I'd say, I don't. Something changed my life significantly at this date and I don't know what it is. And after probably screaming my way through the tri-area medical system and telling them that somebody was going to get me answers, I was screaming at a nurse on the phone who was telling me that he would not accept me to their clinic, that I needed answers. And he said, you should go check out this clinic up in D.C. And I said, well, I literally have no one else who will accept me, so I will go there. Turns out he's one of the most famous doctors in Lyme history. So good place to end up.

Yeah, I think I know who you're talking about for sure. So what I hear in your story, though, is that you did something that I don't think most Lyme patients do initially, and that is you self-advocated extremely strongly, especially women, but maybe men as well who have Lyme. You know, you're already weak enough and they're telling you you're crazy. A lot of the times there's a psychiatric problem. We back down and we just say, well, I guess I'll just do whatever. But you, from the get-go, stood up for yourself. And if we could teach people anything sooner, it would be to become their own doctor. And to be that strong and their insistence that they get help. So yay you, that was—

Yeah, and absolutely, that was what I was given a million times is, here's some SSRIs, here's some antidepressants, this will make you all better. I even tried some of them and they were even worse and they made me feel terrible. And when I refused them, they no longer saw me at their practice. So women absolutely do face that criticism that, you know, you just have to be really deep-rooted in who you are there is something going on, and an ignorant doctor is not going to stand in your way of getting better.

Yeah, we have to remember that doctors don't know everything. And, uh, and also, uh, the Lyme journey itself, if you're not there already when you begin it, um, because of what you do have to go through, you can develop those chops or those skills. I know that that's been the case for me where I will just stand up and say no now. And so I wanna encourage anybody that that may be a challenge for them, that they can develop that, and that can be like a fruit that comes from the journey. So you went on and you're starting to find answers, and then you started treating how?

So I got super excited that I found an answer. Yay, after 2 years, I know what to call my disease that had completely ruined my life. And, you know, I couldn't work, I couldn't do anything. I had moved back home with my parents because I couldn't go to a grocery store to feed myself. I mean, like, my life was really in a terrible place and I had gotten a diagnosis and I was thrilled. Oh my gosh, 2 weeks of antibiotics, I'm gonna be back at this. Who knew it was such a simple solution? And crashing reality that that was not it. And I spent a year and a half on 5 to 7 antibiotics at a time, combination antibiotics. And it was terrible and it was awful. And I didn't get better from that. And at the end of it, I went, well, what was the point of this whole step? Why was I here? Like, great, it's called something, but I didn't even get better from it. And at that point, I left his practice. You know, I was given the option to move to IV antibiotics, but that did not resonate with me. And I did not feel that that was going to be a path to improvement. And I sought out online. I went to the Lyme community on Facebook and said, somebody tell me what you're doing that's working for you because I know you can get better from this disease. And I just serendipitously ended up consulting with an herbalist who was halfway across the country out of desperation again, that I didn't really believe in herbals and I didn't believe this was my answer. And that woman is the woman who gave me my entire life back. She is probably the most influential person in my entire journey, and the herbals that saved me saved her, and just has— there are no words to what this woman and her family, who are herbalists, have all accomplished in helping others.

Wow. I mean, one thing I hope people get from your story is that when there seems to be a crash landing in your healing, um, there is a window or a door that's trying to open. Like, I do believe that, but you have to kind of lean in to figure out what that is, and then you have to accept help. And this is where things are going to get crazy, guys, because I'm going to ask Lauren a couple questions because I know how bad this got. So, um, you will be amazed, um, at how sick we can get and then how much healing can follow that, that sickness. So, um, Lauren, you got in touch with this herbalist She lived in a different state than you, if I remember correctly, and you were very, very ill, um, to the point that you really couldn't get out of— off the couch very easily. Isn't that right? Okay.

Yeah.

So what did you end up having to do with her to just start the journey of healing at all?

Well, so the journey, uh, again didn't look like anything like I thought it was going to look like. Um, so I had connected with this herbalist and she was really changing my life and she was there for me. I mean, I would call her at 2 o'clock in the morning because I was having neurological symptoms that I couldn't deal with and she would answer that call. And of course I felt like a terrible person bothering this woman at her house at 2 AM. And she kept saying, well, you know what, just come here and come here and come live with me and I will help walk you through this because it's not working to do it at a distance. I mean, you are getting better, but you clearly need more care. And around this time, I had lost my relationship through the whole thing. I was single and living with my parents who supported me as much as they could, but could not, could not give me everything that I needed for my journey. And around that time, again, serendipitously, I met someone on the internet that I met him twice in person. I don't know if I had turned into the right person or the world meant me to be that right person, but I was receptive and open to just things changing. And I met Eric, who is my best friend and life partner. And our third date is where I said, would you like to move halfway across the country with me to get treatment? Because this is the only way I know how to fix what's going on with me. And he said, yep, I would be happy to quit my job and move there with you. And so Our fourth date is us getting in the car, me laying down in the floorboards because my vertigo was so bad I cannot tolerate driving. I was having panic attacks in the rest stops because I couldn't deal with the mountains that we were driving over, and he held my hand the whole way there. He had no idea what Lyme was or how to deal with it, and he got me there, and somehow we worked through getting to know each other and dating through this this life-changing thing I was going through and treatment that was horrendous and living in a stranger's house that we loved but was absolutely a stranger to us. And it is, you know, I could go on for hours about just how strange this part of the journey was and how it doesn't make sense. But I just said, you know, I'm going to keep following what's working and what is resonating with me. And that brought me exactly where I was supposed to be in this journey. And she changed my life. And he and I have been together for over 3 years. And there is no one else in the world that is a better partner for me, and we are perfect.

Wow, I agree.

I agree.

I've seen you two in action, and when I heard the dating story, I'm like, this is one of the wildest dating stories I've ever heard.

It really is. I, I would not believe it if it had not been my own story. It just sounds ridiculous.

Yeah, but I think, um, okay, so there's a couple things. It's like, one, you tapped into your intuition. So you said, I'm going to do whatever is working and whatever is the next right thing to do. And I don't know of any other way through the Lyme journey. It's so twisted. I mean, if you draw a diagram of what it takes, it's up, it's down, it's all around, it's through, it's, you know, it's like an amazing puzzle or maze. And so you just said, I'm going to lean in, that spunky personality of yours, and then staying open.

Right?

It's hard to stay open when something really out of control and hard is happening to you, but you have to if you really want to experience healing. So this woman reached out to you, offered her care, and the vulnerable thing that we have to do as Lyme patients is accept it.

And, uh, I would not have been that person. You know, it took 2 years of being beaten down by Western medicine system, by being abandoned by everything that I thought was my path. And, you know, the world just kept telling me, you're not doing what you're intended to do. And I was a very stubborn person that I really had a vision of what my life was gonna be, and I was gonna fight tooth and nail to keep it. And finally, somewhere along the way, when you start seeing the silver lining and the light, you just have to let go of what your expectation of what your life was meant to be and follow where it wants you to go. And that was not who I was back then, and Now I can say that is absolutely the crazy person to follow the little light shining at the end of the tunnel.

I see the smile on your face through the podcast. If you're watching YouTube, maybe you can, but it's like, uh, it's so rewarding to see that because I can see the change in you and I've had a very similar change. So, um, that idea of deep surrender, um, is as the way I've heard it described. So deep surrender is like Okay, deep surrender to my reality. This is my reality, but also a deep opening to what could be. And for you, that was a new relationship with Eric, opening up to this herbalist, becoming vulnerable, allowing yourself to be cared for. All of those things are, you know, they're making you into this beautiful, loving, giving, really ambassador and connector for those of us that need healing in the Lyme disease world. Ah, this is lovely. Just love it. Just love hearing a story like this. So please, if you're listening to it, don't think that, you know, things are going to continue in a negative way, or there's no answer, or I'm never going to find a relationship. Don't think the negative thoughts. Sarah and I were talking this morning about how we have to begin thinking in a positive mindset so that we can move towards positive things happening in our lives and in our healing. And, um, it's not bad to be vulnerable. It's not bad to surrender. And it's not bad to be open to new possibilities that you're like, wait, that wasn't the old Lauren. Well, the new Lauren rocks. So bring on the new Lauren and, um, the continuing healing journey that you're on. And it sounds like Is it this last year that you felt more gains physically?

I mean, since the moment I connected with my herbalist, it's been a constant progression and unfolding. It turned out I had other chronic conditions that I had no idea I had, and that's why I became so sick so fast. I probably would have lived my entire life without knowing that if I had not met my herbalist who said, you're hitting roadblocks, and I'm seeing issues that are un-Lyme related. And I didn't want to hear that after, like, I had embedded myself into being a Lyme patient. And those chronic conditions are what held my Lyme healing back. That's why I didn't have success with antibiotics. And, you know, it all started making sense for somebody, and it kind of made sense why I had to go through this journey to keep finding more things above my journey, above these things, and, you know, all the different things that we embed as to who we are. Are not always helpful in who we're gonna be, and that's always really tough. And I love to throw out Brené Brown is someone who talks about shame and growth and things like that, and she is just, she is someone that if you are willing to kind of open yourself up and be vulnerable, which is a word that I hate because I don't wanna be vulnerable. I don't wanna tell people things that are painful. She's another person that just, even if you just listen to her TED Talk, that like 15 minutes will change how you think about being vulnerable and why it's not a bad word. And why it's probably the thing that will help you unravel the things that you're struggling with in life.

Love, love me some Brené, as does Sarah, and she's been an important voice on a lot of our journeys. Yeah, I think just what you said really rang true for me as well, because once I started getting into the Lyme thing, we kind of paint everything with the Lyme brush sometimes. Or a literate doctor will get us to that point at times. But I have a lot of other issues that are unrelated to Lyme, and I've recently started seeing an acupuncturist who's into herbals and other things as well, and he's bringing those— he's bringing healing to those areas and bringing all that up to the surface. So 2 for 1, right, Lauren? So you're going through the Lyme journey, you get this 2-for-1 deal. Where it's like, I really want to heal from Lyme and all this neurological stuff that's going on. And then all these underlying conditions that you never would have found maybe till your 40s, 50s. You're like, oh, I have a chance to become more whole now. And so I love that. That's a positive outcome as well. And I also really enjoy listening to your rooster cock-a-doodle-doo in the background.

I was about to say, are they that loud? I apologize.

I'm not sure that anyone at home can hear them, so I'm pointing it out because it's, it's part of the ambiance of the interview at this point to be able to know that, that Lauren is on this very cool mountain, uh, that houses an animal farm and a regenerative farm, and the animals are so cute, and it, it's just fun. It's just a healing place, I think. And, and so I'm just reminded of where you're at right now. Listening to that, but yeah, there's so much hope in your journey. And I know that Herbalist was one of your heroes because I think that all of us have heroes. And if I'm being frank and honest, Lauren and Sarah are two of my biggest heroes on the healing from Lyme journey. If anyone were to ask me, I'd be like, oh yeah, Lauren and Sarah, and then a few other people. So, but are there, are there other people, Lauren, that, that you might want to make mention of that have helped to form that healing community for you?

Honestly, most of my healing journey is all from my herbalist and from Eric. I don't think patients realize how much fear and vulnerability and being scared plays a part in our journey. We're given a disease that we don't know what it's called. We don't know how to fix it. And nobody believes us. And we become so fearful of our journey. And taking steps to get better even becomes scary because you don't know the outcome. So as I was treating herbally, I was scared to take my medicine and things I needed to take because I was scared of my reaction. I was scared of what would change inside me, that no one would be there. And Eric and my herbalist, they kept saying it's okay to be scared. And that was something I had never heard in my entire life. Like, I was always told, don't be scared of anything, blind for— like, go forward. And They just kept saying, what you're going through is temporary and it sucks, but you're gonna be okay and it's okay to be scared, just keep going. And there was no one else in my life at any point before that who would tell me that. So my heroes might not be, you know, yes, one of them gave me all the answers to get out, but also to have somebody around you who says it's okay to be scared and it's okay to, have all these feelings because Lyme is such an emotional journey of letting go of who you thought you were going to be, embracing the fear that you might not make it through this because that's absolutely something that everyone who gets chronic condition will feel at some point or repeatedly, you know, and these few people just kept saying, "It's going to be okay. I've got you." And they kept showing up for me and there is no replacement for those people in your lives, the people that keep showing up when you're scared. Right.

And Brené Brown says to do it afraid. You can do it. Just do it afraid. And the more that you do it, the less fear there is.

I was such a bad patient. I let fear absolutely dominate so much of my life. I think that's a huge reason of why I didn't get better faster. I was so scared of what— not of getting better, but of what those steps to get better looked like if they were different. I didn't want to be somebody else. I didn't want to be open to healing and opening to all these different things that people said would be okay because it didn't align with who I was. And letting go of being scared of being somebody else was a huge change in my journey.

I love that. Yeah, I think we— that's a pivot point for, for most Lyme patients, I think, where you're like, okay, I'm done. Like, I'm not doing the fear thing anymore, and I will do whatever the heck it takes to get better. It's weird stuff, guys. I mean, coffee enemas, bring it on. Yeah, I'm at the acupuncturist. I did a weird therapy on Monday and opened my breathing passageways. I can breathe through the right nostril now. That's wonderful. You know, like, it's just— it's this stuff, and you're like, wait, I wasn't gonna do any of that, but wait, what if that's the thing that helps to heal me?

Yeah.

And just becoming open and just becoming a different person. You're not going to be the same person afterwards. And I think the more we try to hold on and get you know, like a grip on, no, I want to be, you know, I want to be the old Suzanne. It's like, no, what if the new Suzanne is better than the old Suzanne? And you're not going to get anywhere if you don't let go and you would see what's in front of you. And so I love that, that you did the pivot and, uh, that you are in the process of healing. And so like today, how would you describe your health today? Where are you at?

I would say I'm probably about 70% recovered. Um, what unfolded through my journey is that I had had hepatitis Hepatitis B for over 20 years. And when you think about that math as a 20-year-old, that I somehow got hepatitis B as a child is really upsetting. I did have some minor issues through my childhood, but it was nothing that was disabling. And I lived a fairly normal life with a couple things that I thought were just, maybe I'm a weird kid. Maybe I just don't tolerate heat well. Maybe I get dizzy a little bit easier than other people. I eat my salt like every doctor told me growing up. And I didn't realize that at that point I had a very serious liver condition that had gone untreated. And so that was another thing to handle and process and go through. And that's mostly what I'm working on at this point. The Lyme is fairly under control, but this liver condition that also blocked my ability to detox from Lyme and treat it actively was the barrier to holding it back. And again, if I hadn't had somebody who kept pushing and saying, not good enough. You're still struggling. You're still facing things. You know, it's— it's not about healing in the right— you know, saying I'm in remission from Lyme disease. Well, that's great. If— if you're still having other symptoms, to me, you're not healed. So yes, my Lyme is probably a lot better. And if I tested, I probably would come up as, quote unquote, in remission. But I'm not better. I cannot drive myself to a grocery store because I still have vertigo. That comes from my liver, but I do not have neurological episodes anymore. I can work a farm on a daily basis. I can go out in the summertime without passing out. You know, it's, it's definitely been a huge change in my life.

I remember you posting a picture or a post or something about being outside chopping wood on a spring day with your family and how much gratitude you had in your heart that you could be outside chopping wood.

Yep, with a liver condition, you become very intolerant to heat, and I could not spend summers outside even as a child. And to be able to go outside and do something as a normal person would do in the summer heat was just this moment of, I am where I need to be and I am making major progress.

So do you practice gratitude then on a daily basis as a way of healing, or—

I absolutely should, and I truly do not. I I choose to let gratitude smack me in the face whether I like it or not. And sometimes that comes from Eric, or, you know, I'll frequently again find myself outside doing something, and unconsciously I'm just like, I all of a sudden realize this is something I used to not be capable of, and I just let it smack me, and I will embrace the moment as it comes. But I am still very much working on practicing gratitude and meditating, and there's all these things I really should be doing, but I I'm a little stubborn, so I just let it smack me in the face when it comes.

We all have our areas of stubbornness. I think, I think there's like something meditative about just being on the farm when you're out like caring for the animals, you know, and just like there's like gratitude happening in those interactions as well. So I think another thing that I take away from your story is you really only need a couple people if that's all you have. When you're really sick that believe in you, that can validate that, yeah, what you're going through is hard, it sucks, but there's also hope. You know, they can both validate and give you hope. And, and I hear that both of those people did that for you, and that was enough. That was enough to help you to be able to climb out of the pit.

And those people were not part of my life before. A big misconception is that my friends and my family who had known me my entire life, they had to see How different my life was? Why didn't they understand how devastating this was? They couldn't understand me in a way I needed them to. And the two most influential people are people who came after my diagnosis, after I'd been on the journey for 2 years. And I just had to be open to making new friends because I didn't want to make new friends. I didn't want to talk to people. I wanted to be miserable and figure out a solution. But that friendship and being open to other people is such it was almost as important as medicine was in my journey.

It opens doors, doesn't it?

Yeah, it really does, and I did not expect it to.

And I think too, it's like in the journey for me, a lot of the people that helped me recover are people that I didn't know before I had Lyme. I mean, like you and Sarah, I didn't know, and I just told you you're two of my biggest heroes. So, um, it's just becoming open to that. It takes a lot to, to open someone's mind and heart to that, but it gets you a lot farther faster. And then another thing is like letting those loved ones that can't understand to be there for you off the hook faster, right? Yeah, because that was hard for me. I was like, I don't know if I can do this. Why aren't they helping me? I just felt bad all the time about myself, and then I finally just let them off the hook. Because it's a very hard thing to understand, um, and said, okay, what has been given? Who has been given? And then go from there. And that sounds like what happened in your, in your story. So yeah, very cool, um, two amazing people who you're just gonna know them the rest of your life. Like, they're, you know, they're now an integral part of your life and you didn't even know them.

And I mean, everyone who's been in the Lyme community knows that if you reach out and ask for help, someone will show up. And it's never going to be who you thought they were, but there are so many people who've gone through this now that if you need support and you need a stranger to talk to, there are people available. And it's just kind of reaching out and going, I'm having a hard time and I just need to talk to somebody about it.

Yeah. Keep an open hand and an open heart. I remember reaching out to people on Facebook Messenger that I would find like in groups I'd be like, hey, can you talk to me? And I was so, so, so sick at the time. And if they didn't respond, I was like, that's fine. But if they responded, I always got information that I needed. And, um, there, there is a generosity out there, and just being open to it brings it to you too, you know. And so, yeah, so this journey— whoo, this is a journey! This is a great journey. Um, But it brought you from not only healing, but something inside of you said, it's not enough for me to heal. I want to make sure that other people are able to heal from this misunderstood disease as well. So tell us about that story and how Lyme Warrior got launched.

So in that 2 years, about right after I got my diagnosis and I can finally put a name to it, I, of course, reached out to others, see what everybody else was doing. Like, you know, is there support for this now that it has a name? Who, who's going to help me? I assume this is like cancer and there's a whole team of people who want to rally and help you get better. And the brutal reality is there are some, but they are underfunded and struggling. And I figured, well, one more can't hurt. So I took a loan from a friend and bought, I think, 40 t-shirts and started selling them. And I called that my nonprofit. And I said, whatever I make from this, I'll donate back to patients or I'll donate it to research. And, you know, I just kept putting it out there that, you know, we the community could raise money to help research, which is underfunded, and then we can start helping patients in need because everybody who goes through this understands that all the out-of-pocket expenses and stuff are very hard. You're already sick, you're already struggling, and then they won't pay your medical bills to help you get better. Really, patients need money more than anything because they're already working on themselves and working on their journey. What they need is money to pay these out-of-pocket costs. And, you know, that kind of just became my, okay, well, I'm going to keep working at this and I'm going to keep getting better. And it's now been 4 years and my sweet little handful of t-shirts has turned into some major momentum that just people connected with me and they said, yes, this is awesome, I want to help. And, you know, we were able to keep growing and doing a little more. And it's— the message kept spreading that I'm just a patient who wants people to not be sick. I want there to be research available and I want there to be financial options available for people. And and, you know, worked with some of the other great nonprofits, and we're all just kind of trying to dig ourselves out of this hole together through, you know, just people like you and me that don't want other people to be sick, and that's where that whole journey got started.

Yeah, that's great because it doesn't take much to become an advocate, right?

Not at all. I was completely bedbound when I started. I mean, I had somebody get the t-shirts from the screen burner and deliver them to my couch. I put them in an envelope and dropped them in the mailbox, 5 feet from the door, you know, and that's how I started it.

Right, right. And it has continued now these last several years. There are 3 areas that I saw on your website that have been the major areas of impact through Lyme Warrior. Donating to patients in need, as you mentioned, that's been one of them. Supporting leading Lyme research, so actually learning what is causing Lyme disease and how in the world can it be treated. So important. And then these smile boxes for kids with Lyme disease. And actually, one of my friend's kids received one of these, Lauren. I don't know if you knew that.

No, that's awesome.

Yeah. Yeah. So of all of these things that you've done, what's the thing that's closest to your heart, do you think?

I mean, they're all so close at the top of my heart. So I'll just kind of like briefly go over each one, like research. I'm not throwing money at the big researchers. Like, we really try to pick the small ones. Like, Eva Sapi has just been my favorite so far. She's looking at, like, real things, not what can we do as a major study that'll give you a pharmaceutical that'll solve it. Simple things like stevia that can help bust biofilms. Whether or not it is 100% proven, 'cause it hasn't been done in humans, people are finding success with it, and it is not something with wild side effects. And she gave us that based on very simple studies that we were able to help assist her with. And she is a Lyme patient herself, so she understands how important tangible solutions are. And that's what I really wanted to fund rather than these big elaborate studies that don't go anywhere. So we've been so thankful for her and her involvement. She, she sometimes comes out to Lyme Warrior events when they're in her area, and she is just as wonderful and fabulous as everybody else involved. Then, of course, patient care programs. You don't really get to see the people who you give money to, so it's really tough. But then all of a sudden one day you'll find somebody who said, I was able to make significant strides in my medical journey because of the money that you gave me. I was too scared to try herbals or try acupuncture or try ozone, but because it was too expensive out of pocket and I had to choose between an electric bill to keep my lights on or trying this, because of that small grant that you were given you were able to make a huge leap forward and find something that worked for you. And that is— there are no words to be able to give somebody hope and a new way to keep going forward. So that program is right now 110% of my focus, to give real solutions to people and to not tell them how to do their journey, because nobody's journey looks the same. And if your healing is to heal from trauma that is causing issues in your body. Like, it's not a medicine. There is no one-size-fits-all. So we give money without restrictions. Do your journey, go forward, and we're here to help as much as I can fundraise for. And then the last one, the Kids Smile Box, is just, you know, kids fighting Lyme disease. I feel like we can never— I was not a child when I went through it, so I don't know how to fully explain it. But what would it be like to be a child, to not even understand the world and to not understand this disease? I don't have any way to process it. But I also know the isolation that I faced. I know that for 2 years I had no friends, I had no family, I lost my relationship, I lost my job, who was my work family. I don't even know what it would be like to be a child to face that isolation. So to send them a box with goodies, they have letters from other children that are fighting Lyme disease that say, "Keep going. It sucks, but keep going." And those boxes, it's not even so much about the toys that are in them, it's that somebody thought about you, and somebody knows that you're having a really hard time, and you're not alone in this journey. And that's, again, just— money has no bearing in this for me. I need kids to know that this will get better and this is not the end.

So that one's getting to me a little bit. Yeah, it's, uh, it's a tough one. Yeah, I was holding out on my tears until the third one, and then I was like, it's, it's real. It's real, and it has to be incredibly rewarding to see those pictures come in when those kids receive the smile boxes and they know they're not alone and someone is thinking of them and they can make it, they can make it through this. So this is good stuff. The Lime Warrior organization continues to be up to good work, and I believe there's something coming up this fall that people can participate in. Can you tell us more about that?

Yep, so obviously with the state of the world right now, everybody's doing the online thing and going a little remote, which is a lifestyle I've operated in for 4 years. I'm pretty used to it. But what we're gonna throw is— think of Wipeout meets Nickelodeon slime. We're gonna have 6 local runners and 6 kids do a wild obstacle course at my house where it will be splatting people with green slime and racing and fundraising to help patients in need. But people can also get involved online They can say, hey, for $100, I'm going to dye my hair neon green, and that will help go support the cause. If you want to virtually run, basically we're, you know, asking people to do whatever you do to get involved and fundraise, and it'll all go to helping patients in need and filling those smile boxes. And we just— it's such a tough world right now that we want people to have fun. We, you know, even if you don't raise a cent, we want to see people smile and find a way to bring happiness to the Lyme community because it's such a depressing subject. Let's try to bring some fun and some happiness and to the world, because for our community and the world, we all just need a little bit more fun. And to help patients and to keep spreading awareness about this disease obviously is the, the silver lining to it all.

Absolutely. That's the heart behind Lyme Warrior, and so I'm very excited that you have this event coming up, and I can't wait to watch it. Sounds like fun. Can you give people, as we're wrapping the interview up, your, your socials. So, because there are some patients or caregivers that will hear this that actually aren't familiar with Lyme Warrior yet, and so we want to make sure that they can get in touch with you.

Yep. If you go to lymewarrior.com, we actually have links and resources that you can click. I'm a patient. We offer PDFs of kind of everything I wish I had known when I was getting started. We also have versions for caregivers that talk about things you can expect what to expect from your partner because obviously they're going through a whole different thing. They're not gonna be the person that you started this journey with and we try to put things out there to share kind of what to expect instead of learning it the hard way on the job. So, and you can also find us on Facebook, Instagram, Twitter, everything @LymeWarriorUS and all that stuff and we'll be posting again about all the events coming up. We love posting the smile box pictures— the best way to follow all the craziness we're getting into.

Yeah, it's a good way to keep in touch with positive things that are happening in the Lyme world because sometimes it can get negative. And so Lyme Warrior is an amazing place for people to connect with online and to be able to have hope along their journey. So Lauren, thank you for being one of my healing heroes. Say hello to the animals for me, please.

I will.

And we will be seeing you around. We appreciate you taking taking the time today.

Thank you so much for giving me the time. Appreciate it.

If you're listening to the show, you're probably not a fan of ticks or biting bugs. Many of us can't even enjoy the outdoors because of pests like ticks and mosquitoes. You know, Sarah and I realize this in a very sobering way with her second tick infection. You know, we live in Colorado, one of the most beautiful places in the world, but honestly, we were scared to enjoy it. That's why Tick Wires invites you to come to the green side and join them in the war against ticks. They provide— check this out— eco-friendly products for you, your family, pets, and yards to reduce damage from ticks and tick bites. Learn how to safely protect your family and yards and help battle tick-borne illnesses. Remember, ticks will bite year-round in many places. To learn how you can enjoy the outdoors again, visit tickwarriors.com. Go to episode 92 to hear the full episode about the products. Also, don't forget this: Tick Warriors is offering a 10% off discount to all first-time purchases. Simply add LymeVoice at your checkout and you will get 10% off. Go to tickwires.com today.

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 asked 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. The information is not advice and should not be treated as such.

Okay, Lincoln? Okay.

The medical information on LymeVoice is provided as is without any representations, warranties, expressed or implied. Okay? Okay. LymeVoice makes no representations or warranties in relation to the medical information on this podcast. You must not rely on the information on this podcast as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about your medical matter, you should consult your doctor or other professional healthcare provider. And for you, you consult your parents, okay?

Okay.

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

Got it.