The Heart of CIRS

Dr. Christian Navarro-Torres of CIRS Lab: CIRS Symptoms, Science & Insights

September 29, 2023 Season 1 Episode 2
Dr. Christian Navarro-Torres of CIRS Lab: CIRS Symptoms, Science & Insights
The Heart of CIRS
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The Heart of CIRS
Dr. Christian Navarro-Torres of CIRS Lab: CIRS Symptoms, Science & Insights
Sep 29, 2023 Season 1 Episode 2

https://ko-fi.com/theheartofcirs

CIRS Lab on Instagram

CIRS Lab Mailing List

May the awareness of CIRS spread far and wide, helping to change millions of lives for the better 💙


Show Notes Transcript

https://ko-fi.com/theheartofcirs

CIRS Lab on Instagram

CIRS Lab Mailing List

May the awareness of CIRS spread far and wide, helping to change millions of lives for the better 💙


Melanie Pensak:

Welcome to the Heart of CIRS podcast. I'm your hostess, Melanie Joy Pensac, here to share heartfelt conversations with folks recovering from CIRS and with those special people serving the CIRS community. The podcast was created to help bring awareness to the physical, emotional, and mental experiences of folks navigating CIRS day to day. The world needs to know what CIRS folks go through for deeper empathy and understanding. Thank Through stories and vulnerability, we can help the world understand the winding journey of CIRS Recovery. Thank you for being here to open your mind and to open your heart. I'm very excited to be in conversation today with Christian Navarro Torres. Christian is somebody that I connected to through really the social media world. through Instagram. He has an account called CIRS Lab, where he's creating really informative content about the CIRS illness for folks to listen to and process and consider. thanks for being here, Christian. I'm excited to chat with you and thanks so much for, for creating that information.

Christian:

Thank you, Melanie. It's really my pleasure, if anything, and I'm glad that, we're having an opportunity to build these communities to start putting CIRS out there and, public domain, not just within the chronic illness community, but also in the public domain at large. So thank you for that.

Melanie Pensak:

Yeah, thank you. I created this podcast. I really wanted to have heartfelt conversations with real people who are. navigating their CIRS recovery and for those in the field, who are really helping others along the way. There's a lot of CIRS guides, CIRS angels, CIRS doctors, IEPs, people in the community, and it really, it really takes a community to navigate, this illness and I think. in my experience so far, a lot of people who come into the CIRS world, they themselves have either gone through it or they know somebody, a loved one or a friend who's gone through the illness. And it's, really important, I think, to share some of the stories behind the people and the work too. glad that you're, you're here to do that today. I'd love for you to share a little bit more about your work and I'm sure that will come up as we go through the conversation, but I thought we'd... maybe start the conversation, go back to the beginning a bit and touch on our experiences with CIRS. I had seen on one of your Instagram posts an interview that you had where you were sharing a little bit more about your story, and there were definitely some parallels and similarities in our presentation. And one of those was really in the area of digestion. And so I was wondering, yeah, if we could start there and I'm curious if that was, was that one of your first signs or one of the more significant signs or indicators of CIRS for you? How did that come

Christian:

about? Yeah, I think it was. It certainly has been my Achilles heel, and, since I was a child or a kid, I always had some subtle digestive issues here or there, with weird food intolerances. I used to get sick a lot, and eventually I figured out that it was tied to food, but, I never had CIRS on the radar. So that was always in the background of my, my profile, but certainly once I got into graduate school, this was about, nine years ago now, where nine to ten years ago, where I started to experience more aggressive. digestive issues. And coincidentally, this is when I moved into the mainland U. S. I'm originally from Puerto Rico, which is, part of the U. S. But not it's politically, we're a separate entity or non incorporated territory. But once I moved to the mainland, I noticed that I started to feel these digestive issues getting a little bit worse. And what's really interesting about this And my experience is that I had a lot of these sort of in and out phases where I would run into some episodes. So back in 2015, for example, I was living in a basement apartment in my second year of grad school. And I remember I suddenly started getting really sick. I couldn't tolerate any kind of food whatsoever. And this lasted for about a month and I couldn't figure out what to do. Strangely enough, after about a month, I had to go to this conference in Germany to give a presentation. I was really sick. I couldn't eat almost anything and I thought, Oh my God, I'm going to have to go to a hospital in Germany to try to get everything together before this presentation that I had to give. And believe it or not, two days into sort of my stay in Germany. Suddenly, just everything went away, and I just went back to normal. I was eating, gluten, everything. I was, I was just eating every kind of food that you can think of, as if nothing had happened. And at that point, I thought, maybe there's some food issue going on here between, Europe And, And the U. S. And maybe there's some to that, but eventually to me, really, that was just a sign of okay. I was living in an environment. I was living in a basement apartment. My body was losing resiliency and then once I removed myself from that, I went back to normal. And then, there were several years where I was like normal again, and I was very active. And then in 2019, I came back into another phase and this, this time it was a little bit different. I was starting to experience other kinds of symptoms along with the digestive disorders. and that's when I got diagnosed with pancreatic enzyme insufficiency. So I had a lot of mild absorption issues. and then again, I was able to get out of that with treatment for this sort of enzyme deficiency, and I went back to normal, but that only lasted, about a year before I actually got into the, deep into CIRS in 2020, which is what I call the point of no return. So I think we all have these sort of. ins and outs with this illness. And the cue for me has always been the gut. And then at some point, the body loses resiliency and you reach this sort of point of no return. And I don't know if you've had anything like that that happened to you in that journey, since you have all these digestive issues, if you, if you picked up any patterns like that in your case.

Melanie Pensak:

Yeah, for me, it was digestive issues that started, I guess now it'd be like seven years ago. And It started out as this food or that food would be a food sensitivity. I didn't have food allergies and it started, it just snowballed. It felt It was one thing, and then it was another food, and then another food, and I was living in California in the LA area at the time, so there were plenty of functional doctors and, practitioners to work with, to help resolve whatever was going on, is it candida, is it this, and because the Western medicine couldn't find anything, as an issue, and and I think one of the big things now, knowing what I know about CIRS, I tried every type of functional digestive technique out there and, there were so many different, programs and diets and things that people were throwing at me and nothing worked and I was actually becoming. Sicker and it was impacting me socially, you know, I started to withdraw from meeting with friends to go out to eat. It made dating difficult because I couldn't order anything off the menu. I had to really be particular about food and. It was a pretty significant, issue in my life that I worked around and hit and couldn't understand why nothing would make it get better. But now knowing what I know, I understand that there were other mechanisms at play.

Christian:

so you and I have that overlap too, that, in 2021 for me, that's when I started going after the gut proper with functional medicine and I thought, oh boy, here we go. This is great. I started doing all these, gut healing supplements and, candida, anti-microbial treatments because I did have this bios and every time I tried anything, It was like, I would get better maybe for like two, three or four days. And then I would just go back to square one and no matter what we did, it was just the same pattern over and over. And yeah, the doc, my, my functional doctor, I was actually living in Irvine, California. So we have that commonalities where we're in the LA area. I moved eventually to finish my. Sort of PhD at UC Irvine and that's when I really started getting chronically sick with this and I was doing all these gut healing regimens and they just wouldn't work and the doctor couldn't figure it out. if for anybody listening to this, if that's you. You want to think right away, CIRS. That's like a big red flag.

Melanie Pensak:

Absolutely. And any of the functional practitioners out there who have patients who they have put all of their different techniques and tools on and nothing has changed. That's also a red flag to start thinking that there's something else going on and to consider CIRS as a possible diagnosis for that client.

Christian:

Absolutely. Yes. Yes.

Melanie Pensak:

And it's interesting that my point of no return was really April 2021, that timeframe. And when I hit that point of no return, I lost so much weight. The digestive system was the first thing to go. I lost 15 pounds. I was malnutritioned, malabsorption, couldn't support the energy that my body needed to really get through the day. had to use a wheelchair at times to, to get through doctor's appointments and

Christian:

things. So we have a lot, so much in common because it's exactly, I had the exact same thing, I'll insane amounts of weight loss. And eventually I ended up in a wheelchair. It took about a month for me to get out of it. How did you

Melanie Pensak:

handle that? Were you by yourself at that point? Or my sort of, I'm so curious what your thought process was, because I know for me, I was so perplexed why. I would have been so healthy. I was somebody that used to walk sometimes four or five miles a day, hike, very active, and, how was I in a wheelchair? how was I at that place? But something inside of me, I knew there's something going on here. I didn't know what it was at that point, but I deep down knew like something is very wrong,

Christian:

Yes. for me, it was perhaps the most perplexing moment of my life. when this happened, I, I was doing this functional sort of treatment. And we, after going through all the antimicrobials and all the stuff, we decided to try the binders, the sort of natural binders, right? The ones that all the functional doctors will tell you about, charcoal. And so I went that route not knowing about CIRS yet. And at first, that seemed to trigger something completely different in my body for the first time. I said, hold on, there's something here going on. And for the first week, I was... Actually, there were moments where I was feeling good for the first time in a long time, but then after the first week, it was complete madness, dysregulation, and for me, what started to happen, you know, I was experiencing the frequent urination at night, and it was getting progressively worse, and then once I started throwing charcoal into the equation, the frequent urination became out of control, I literally spent an entire day just in the bathroom and I drinking insane amount of water and it didn't matter and that's how I ended up in a wheelchair. I just I got to a point where I couldn't walk. I couldn't get out of bed. I had probably I had no minerals available in my body and I was. I was thankful that I had a roommate at that time and she was the one who was doing all the, laundry, all the basic things because I couldn't even take like more than two or three steps without falling to the ground. And yeah, like you, this is someone who I've been historically and a very, very active person. Since I was a kid, I always, I played a lot of basketball, a lot of sports, a lot of ocean activities. I, I'm a musician. I used to play a lot of, I'm a drummer by training. I used to play a lot of, music live, just a really active person. And I was doing a lot of strength training before SURS. And yeah, to go from that. To this state of affairs, I just could not, I thought, Oh my God, that I became diabetic in 24 hours or something like that, because that's how it felt. I already knew, like, these are symptoms of someone who has diabetes, this whole frequent urination thing and, and my doctor couldn't figure it out. So I think he panicked a little bit, my functional doctor, but, you know, so that was, I think that was the scariest moment at that point with this illness. It's probably at the very top of scariest moments. Yeah,

Melanie Pensak:

it was for me as well. I remember I was living by myself at that point. It was during the pandemic and I had ended up in a place where I didn't know anybody because I had left California to escape some wildfires and relocated to Boise, Idaho, just to have a break. to reconnect and try to figure out like where I was going to go after those fires in my life. And I had moved into a water damage building at that point and didn't know, was inside all winter long, writing a book, breathing in that air. And I was getting weaker and weaker, but didn't realize like what was happening until that point of, no return. And I remember thinking and having to make that phone call to my parents and my family and be like, I need you to come out and help me. Like I might need to move into assisted living or a home. Like I can't take care of myself anymore. And my parents. We're like, when do you want us to come? And I'm like, now, And I remember I couldn't even lift my arms to dry my hair. I was so incredibly weak and it was. Really traumatic. It was something that I think I still think about, as being one of those moments of it, it's so significant where you know that something's gone and then your independence is almost taken away. Mm-hmm. it can really, yeah, it can be a scary part of the experience and that doesn't happen for everybody, but it definitely sounds like we've had some, some similarities there.

Christian:

And on that note, yes, the loss of volition is just something, and I certainly have always been this type prototype of person who I don't want to use the word pride, but in a way, pride myself of being very autonomous as an individual. And right for me, that was devastating. And the other thing I wanted to bring up and ask you is during, during this phase, I was experiencing a lot of severe anxiety. And it was just, it got to a point where it didn't matter what I was doing, just about any sort of stimuli in the environment would trigger this crazy, weird, jolting, adrenaline rush. And I don't know if you had, if you went into a phase like that at some point, or is this just anxiety across the board? And then something happened in my body that I just... Crash. and it went to, to the other extreme. And so I, I don't know that that was happening to me during this, time phase, or time point. And now I think of it as, whoa, I was probably frying my brain and nervous system. And that's another source, contributing source of dysregulation for emotional, from an emotional perspective in terms of how you cope with a lot of these, drastic changes in your body.

Melanie Pensak:

Yeah, I definitely had those periods of really intense nervous system dysregulation before the weakness hit me. For sure. I have a background as a mindfulness teacher and a meditation leader, and I started to notice that it was really difficult to practice. And I remember. Trying to use like every tool in my toolbox to really calm down my nervous system because I had the awareness to know that my nervous system was dysregulated while it was happening. I wasn't wrapped up in it and afraid. I had this awareness, I think, from my meditation practice of being like, wow, something really strange is going on in my body and I can't. Find a way with all the tools that I have and know to regulate it. And I remember actually having a phone call with one of my dear meditation teacher friends in France and saying, I don't know what's going on here. Nothing. I can do nothing. I'm doing is working. I was actually in a bathtub with water, like warm water on my feet, trying to find a way to really soothe and calm my nervous system. Like I had. All the tools that I had practiced were not working at that point, and we didn't know that I had CIRS then, but it was really It was a really strange experience to have that awareness of what was happening and not be wrapped up in it, and nobody could really give me the tools to calm things down.

Christian:

That's, that's, it's right. You couldn't think of a better person to be prepared for this than you with that background. And, what can you do at that point? it's crazy that, you, you had to go through that. but, thankfully now we have a much deeper understanding on what was happening and we can piece this together. And I think that's. such a liberating moment where you can do that. so yeah,

Melanie Pensak:

I think it is really powerful to educate yourself on the illness because now, a year into treatment for me looking back, I can now piece these things together and it really does help with the healing. At that point, it was hard to understand, but now knowing how the illness works and there's brain inflammation and, what parts of the brain are impacted, it really makes sense on piecing together what was happening during that really stressful time.

Christian:

Yes, absolutely.

Melanie Pensak:

I know that you were, and I were talking a bit about, you have a scientific background. So if you want to share a little bit about that, that'd be, I think, really interesting for people to hear about and, how. Did you, eventually get to CIRS and what did you think about it? Were you skeptical? Were you bought into it? What was that process like for

Christian:

you? Yeah, So I, so my, in terms of my academic background, I did a master's degree in cognitive psychology at Penn State University. and after that I moved to California to finish Ph. D. in language science, which is really an interdisciplinary, community where you have people who study language processes from a neurological, psychological, linguistic, computational perspective, and in terms of the research that I. focused on. I study the cognitive and neural basis of bilingualism. So I look at, people who speak more than one language, and I try to understand what is the cognitive and neural machinery that's involved in allowing You know, us to be able to use more than one language, because we know that there are these sort of adaptive changes in the brain that undergo when you have experience with the second language. So this is where I'm coming from, from a research perspective, which is not really CIRS. in reality, if you don't have CIRS in the radar in some form, you're not going to think about that, much. Eventually, though, once I, I started getting sick and I started getting sick, during, towards the end of my PhD when I was working on my dissertation, I eventually, once I, I heard about CIRS and, um, was hitting that extreme point with all these symptoms, then I started to figure out, is there any scientific literature behind this? And I started to, do my sort of academic, and I Scholar Search, and yes, I started finding all these, studies that were being published since 1998 by someone by the name of Richie Shoemaker, so this name kept popping up, Shoemaker, Shoemaker, Shoemaker, here, and, and I started reading, and at first, I couldn't quite figure out what, This illness meant it took time for me to, to understand the whole framework, because when you're coming from, even as an academic, we all come with sort of these. pop, I, I, I wanna say preconceived notions of a particular phenomenon in the world. Sometimes they're more ideological and they could be scientifically informed, but you create this landscape view of, of particular phenomenon, and I start reading about suddenly, molds and biotoxins, and then tying that to a long list of symptoms that have nothing to do with each other, hormonal things, digestive things, neuroinflammation, I just couldn't parse that information out at first, and there was a phase during that where I became very skeptical. I was like, this, I have, why haven't I not come across research that speaks to this in some form? and, but eventually, I allowed myself to, to follow through the literature, to read it more carefully, and then to start thinking about how I was experiencing all this illness. And eventually. I got to the point where once I read the literature, I realized, wait a minute, I have a framework here the only first time in my life, if I start thinking about, everything that has happened since I could remember since I was a kid, now I have a framework that allows me to explain all these seemingly unrelated things. And not only that. There is a protocol that has been tested that can put all of this stuff into remission. So once I, I accepted that, to me, I was like, okay, I have to see this through. Maybe the protocol You know, there's something to it that doesn't work, but I need to try it. I'm a scientist, and, scientists, they go after the unknowns. You go after those things. I started to, I went from being very skeptical initially, in part because I didn't understand what was going on, into sort of using my academic background and my, Scientific thinking to try to push myself into this sort of discovery state of affairs with the illness. So I said, okay, I'm going to try this protocol. I'm going to do all these things and see where they take me. And low, as I went further. I was paying a lot of attention to the details with the shoemaker steps, and I could tell that something was changing qualitatively every time I made progress in ways that I had never envisioned would happen with me. So that's a little bit of that dynamic between going from being. A scientific, scientific skeptical to jumping into more of a mindset of, discovery and, and, and exploring. this new landscape. And boy, am I glad that I did that because it changed my life in ways that I would have never imagined.

Melanie Pensak:

Wow. That is so fascinating to have that background and to go through that process academically and research articles and things, most people, if they put together that it's. Possibly mold. They might not be aware. It could be bacteria or other things, but if they at least, have the idea, they had a mold exposure or something, you go online and Google is the first thing you're going to do, or you're going to get on social media to get your information and there's so much content out there, but if you have the genetic. Predisposition and how serves those strategies that people are using just don't work, right? And I think a lot of patients and people that I've talked to, they want it to work and they think, that's the easier way, right? If I can just go into the infrared sauna, why wouldn't I do that? or. To go through something that has so many steps and that are very scientific and complex for people who don't have that type of background seems let me try the other things 1st, and see if those work and. We know that that is, is not going to be the case for people who have that, genetics, yeah, big decision. It's a, it's like a leap of trust to really jump into the shoemaker protocol. I think

Christian:

I, I think that's a great way to put it. there's a leap of faith that you have to take with this and. I was lucky enough that I had in my, not just scientific training, but in my sort of educational training more generally, I actually, when, before my grad school, I, I was, I studied philosophy, so I had a very strong humanistic background that really encouraged me to be a critical thinker, and over time, I learned to make this distinction between being skeptic and being a critical thinker. I think skeptic skepticism is, that's part of the toolkit of scientists. you can be skeptical about just about anything that everybody tells you. and I actually think that's relatively easy to do. We do it all the time. and you can see it in, conspiracy theories and things like that. so that's not necessarily differentiates like a scientist from another person. I think it's really this sort of critical thinking approach, which is. you, you, you have a set of ideas about something and you're willing to falsify them in some way. So you start doing a lot of trial and error, thinking, and that's the mindset that I try to implement going into this illness and into the treatment. It's just, okay, I'm going to do a lot of trial and error, and I'm going to be using this framework as a guidance for my treatment. And then, so I was trying to falsify the shoemaker protocol, essentially, as I was doing the treatment. That was my mind mentality going into it. the truth is that I, I just, every time, like I said, I kept doing these different steps and I figured out issues with exposure. It was like, oh, it's going in that direction. So all the patterns and all the signs are coming together to validate, this protocol. I, I had that, I was fortunate to had that background, maybe from my education that allowed me to, to take that leap of faith in ways that I know perhaps other people may not be willing or ready to do And I completely understand because this is quite a drastic shift, in terms of how you think about not just yourself, but the world around you. Yeah,

Melanie Pensak:

absolutely. For me, it was more of a following of a deep knowing and intuition, I would say. There was this inner knowing that I didn't have much time, that time was of the essence, and I had to make like the decision That was going to help me with my health because I was really losing independence and there were a lot of different synchronistic steps that eventually led me to my physician that I'm working with and. When I saw some education around the illness that, that he had made, it was a knowing it was, I, this is me, this sounds exactly like me, this is what I, the direction I have to go in and I just had to to feel that out, but it's really hard, it's really a hard decision, whether it's, you have a scientific background or you're following your gut or your intuition to, to take that leap of faith and boy, I'm, I'm glad that I did as well.

Christian:

Yes. Yeah, absolutely.

Melanie Pensak:

And now that we're in it, I'm a year into treatment. How far along are you?

Christian:

I, so I started treatment officially in February of last year, so about a year and a couple months. and I've had, my moments of, I had to stop the treatment because I'm moving or I don't have the resources to continue treatment. And so throughout the whole. throughout this time, I've made sure to do whatever happened. I would always use, the binders. Welco is my go to for me. That's like a life saving thing. And then I, I had, all these other. components some supplementation that keeps kept me going and then of course the my little I adapt there and candles and all these, tools to manage exposure. I always make sure to keep myself at a certain level with those things. And eventually, I was able to continue the protocol once I actually moved here into the D. C. area, which is where I'm at now.

Melanie Pensak:

Yeah, and here we are, you're creating online content. I'm creating this podcast and I, we've chatted a little bit about the fact that you feel like you can't walk away from the illness once you start to have this information and see the changes that the shoemaker protocol can make on the body. And yeah, tell me a little bit about that and, your decision to, to make an online platform that's also

Christian:

bilingual. Yes, that's a, the, the, but I'll say right away the bilingual stuff. okay. I've been wanting to, to do something, ever since I became immersed in the CIRS world, it's because of my background as a Hispanic, Puerto Rican, Spanish speaker. And realizing that none of this was, available outside the U. S. and Understanding that there's an incredible amount of people out there in the world who are suffering from this and they have no clue. and I can't even imagine what that looks like. But more generally, in terms of creating Search Lab, I would say there were three ingredients to it. one of them, which is tied to this bilingual component, but more generally, was This motivation of wanting to bring in the patient perspective into the public eye. at the time I came into CIRS, I was, like we just talked, lucky to come into contact with the scientific literature relatively early on and start getting a grasp of the illness, the diagnosis, and the treatment. But then I noticed that what was missing in that picture was this patient's perspective. we had access to all these amazing. videos from, Dr. Andrew Heyman and all these things, which for me were amazing, but I knew that, for our, for an average patient, that information is just not accessible or necessarily as useful. And, and I wanted to do something that showcase, what does it look like to go through this illness on a day to day basis, and, and how do you, how do you go about that? Sort of the, the details of that in some capacity, and. So for a big, for a big motivation for me has always been to, to just figure out a way to tell these things to the average person in ways that they can understand and possibly even relate to, even if they're not first patients themselves. The second thing is, that I think was a catalyst. is, just seeing the science was being lost in translation. I, I felt, I was participating in a lot of these, Facebook groups at the very beginning, trying to have an outreach in terms of just meeting other people with the illness. And I just realized over time that there was this disconnect between the scientific part of what we knew about CIRS from a scientific and medical perspective and what patients. search and how you go about treating it. And Like I said earlier, it was an incredible insight to me once I realized that there was a way to explain all these symptoms and also that there was a treatment protocol to put the illness into remission. And a big motivation for the CIRS LAB space was to create this environment where patients can learn about that in a way. That is accessible and useful to them. And the third thing that I'm gonna mention that I think was really critical is that eventually I came across, a person. Her name is Ave. And she's actually, the second. the right hand side of CIRS lab. So CIRS lab is not just me. It's there's a second person involved and she's a CIRS patient as well. And, we met through sort of these Facebook groups when we were figuring out how to go about all of this. and we, we were really struggling. We were. And so we, but we naturally grew. gravitated towards one another because we were both, one thing we had in common is that we were willing to do whatever it took mentally and spiritually to regain our lives back and figure out a way to overcome the illness. And so we piggybacked on that goal. And found ways to help each other, when essentially no one else was there to help us. We were two complete strangers who had lost our life and in some ways our humanity through CIRS. But out of that, we figured out a way to push through that. And, you know, we got to safer terrain, sort of speak. And, once we, we were able to progress further with the treatment and, a lot of it had to do finding, a, a living space for both of us that sort of where we could live. she was the one who said, Hey, listen, I think you should consider doing this because you have a background and you have a profile. That's not. usual in, in, in the chronic illness community. So she was the one who really, pushed me in the right direction. And then since then, we just started creating Search Lab together. And there's more to it, but that's more or less the back story.

Melanie Pensak:

Oh, wow. I didn't realize that. That's amazing. I'm so glad that Alex pushed you in that direction and what a gift to find each other and to have somebody to, to Really discuss and to support one another through this process. That's really a beautiful, outcome from all of this.

Christian:

Absolutely, yes, like you said, it takes a village, to heal, to navigate and heal from CIRS and from chronic. Illness at large, and in my case, the concept behind CIRS, lab is it's it's. multiple minds working together, helping each other and I'm, my, I'm, one of my big goals is to be able to start, helping grow these other communities like your space, which I think it's fascinating and really important in the healing process. And, and this is something I picked up from my scientific background that the biggest sort of strides that you make with science. Discovery is when you start bringing in the community of different scientists who don't talk to one another, usually you bring them together and you realize, Oh, we're asking very similar questions. We're interested in similar things. We just didn't realize. And that's the sort of the model that I, I want to implement and search lab and as it relates to all these different communities for chronic illnesses.

Melanie Pensak:

That's beautiful. Yeah, I'm curious, what do you wish that doctors knew about CIRS? that aren't... involved with CIRS, not the CIRS doctors.

Christian:

I think, what I would say to them is that when they look at a CIRS patient, they are essentially looking at the future of modern medicine. That's what I would tell them if I had to say it in one sentence. with a lot of conviction. it's, once I was able to wrap my head around cirs I understood that. Oh my God, we're looking into the future. what the shoemaker protocol, the discoveries that took place in the last two decades or so. This is a saltational exponential, discovery. And that's not very common because in science. It's very incremental. The progress that you took in science is very, naturally very conservative and it's incrementality and how it, what it accepts as, okay, this is now common knowledge and, Dr. Shoemaker Dr. Shoemaker made this exponential jump with that discovery and And I think now we're at a point where we can start having this conversation with doctors enough so that we can, I think this, if you ask me personally, this next decade is going to be an important decade in that respect, where I think the non, the doctors who don't know anything about CIRS, they're going to one way or another start hitting into this. And, I think it's going to. have all kinds of consequences in terms of our understanding of chronic illness because chronic illness is not properly treated as we know in the current sort of model of medicine. And I think, I think what CIRS is, is it's, it's a very ideal example. we have all these different chronic illnesses. We have cancer. we have, diabetes, autoimmunity, and we have all these things, some of which may actually fall under CIRS, but I think CIRS is like a, a, a very ideal example that I think it's going to spearhead our understanding of chronic illness and how, how we can change the model to, to be able to account and, and integrate, that kind of understanding and treatment.

Melanie Pensak:

Yeah. That's so interesting to hear what you're saying about, the jumps in the information that we have about the illness, like how that's happening quickly. It does feel like there's momentum building around awareness around this. I have not been involved in the field for very long, but it. In even just this last year, it feels like there's a lot of conversation and developments. And I know there's been a lot of doctors and researchers and people working on this for years now, but it does seem like there's some sort of momentum building with knowledge and awareness. And, I think about my primary care doctor that I work with that knows knew nothing about it and who I'm sharing all this information with now and. How he really was skeptical, at first, and I, I think to myself, sometimes like 20 years from now, is he going to look back and be like, Oh, yeah, that girl, who was trying to teach me about CIRS, maybe she was talking about,

Christian:

I think that's exactly what's going to happen. I'm almost, very certain this is what's going to start happening more and more. and I've, I've been trying to do the same thing with actually, I'm currently. Working with someone who has served in Puerto Rico, and, I'm working with a doctor, locally there who has. No idea whatsoever, but I think he's taking a bit of a leap of faith, like sometimes you do find these doctors that are willing to do that even if they don't know where they're going and it's a risk, I understand, but I think it's going to take that type of mentality and spirituality. In order to, to really make big strides with, with this illness.

Melanie Pensak:

Yeah, I'm personally so grateful for each and every one of these doctors and professionals that work in the field because they really have had to take some risk or take the time to learn about it. and not everyone's willing to do that so I'm grateful for the group that has. Absolutely. Yes. the last question that I have for you before we wrap up is what gives you hope right now? as you continue to go through recovery and what keeps you going?

Christian:

yeah, that's a very simple yet very deep question. I think there's different layers to it. I would say, at a personal level, it's the fact that I You know, understanding that this, or, or experiencing the process of, being happening for the first time, unfolding right before my eyes, for the first time in my life. That, having that feeling is, something that I can't explain, but I know that you and anybody who goes through this understands. Once you, you start that path, I think... What happens to our nervous system and our brains, this for me personally. This machinery of the pursuit of discovering more And this is something I've always had as a scientist for me. One of the important features of science is this pursuit of discovery. Science should always be about going after the unknowns. you should, that's where science should be going to explore that. And going through this illness has allowed me to apply that concept in a way that has changed my life, because what happens is, over time as you start getting better, you realize that Maybe the version that you knew of yourself before this illness was not the version that was meant to be, that there's a new version out there waiting for you that you haven't fully discovered. And so that in of itself was enough to, for me to tell myself that, it doesn't matter what happens. I am making a pact with myself that I have to see that through. I want to know what that version looks like. and it doesn't matter what, what it's going to take. so that's something that I was, it was a very personal conversation that I had with, myself, that I, I was just willing to do whatever was necessary to do that. And I think that's a really big part of. me staying hopeful. And I know that no matter what happens, there's always going to be another layer of discovery. So that constant pursuit of discovery of who am I through this illness and then sharing that with others, I think it's always going to be there. And it's really what keeps me going.

Melanie Pensak:

That's beautiful. Thank you so much, Christian, for sharing all of this, your knowledge, sharing your heart and, hopefully giving inspiration to all those that are listening. I really appreciate your work and wish you, continued health and wellness and hopefully to connect, in person someday too.

Christian:

Absolutely. It would be my honor and thank you so much for having me today, Melanie. Thank you.

Cheri:

Thank you for listening and for your kind attention. To keep in touch, follow the Heart of CIRS podcast on Instagram. You can visit melaniepensak. com forward slash the heart of CIRS to donate. Your generosity helps to keep this podcast growing. May the awareness of CIRS spread far and wide, helping to change millions of lives for the better.

Bing.