https://ko-fi.com/theheartofcirs
https://www.survivingmold.com/
May the awareness of CIRS spread far and wide, helping to change millions of lives for the better 💙
https://ko-fi.com/theheartofcirs
https://www.survivingmold.com/
May the awareness of CIRS spread far and wide, helping to change millions of lives for the better 💙
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. Well, today is a very special day here on the Heart of CIRS podcast. Dr. Richie Shoemaker of The Shoemaker Protocol is here. For those within the CIRS world, they would be very familiar with this name, but for those health professionals and people new to CIRS that are listening, he is the doctor who discovered the illness in the only clinical research based proven way to heal from CIRS. Dr. Richie Shoemaker graduated at Duke Magna Cum Laude in 1973, and from Duke Medical School with honors in 1977. He finished family practice residency at Williamsport, Pennsylvania in 1980. He began his rural solo practice in Pocomoke, Maryland in 1980 and has been there ever since. He has been awarded the Governor's Environmentalist of the Year and Family Practitioner of the Year in 2000 and was runner up for the National Award in 2002. His work on biotoxin associated illness has consumed him since 1996, when an outbreak of hysteria brought new medical and environmental demands into daily life. Intrigued by this new illness, he has published now 59 papers. 14 books, 8 book chapters, and several hundred academic lectures on CIRS, Chronic Inflammatory Response Syndrome. He has been doing clinical research using a transcriptomic assay for which he is a co inventor with Dr. James Ryan since 2015. His focus recently has been on reversible brain injury and DIBAC CNS degenerative disease. He says he can't retire. There are still brains to fix. Deep appreciation for your work and thank you so much for being here today, Dr. Shoemaker.
Dr Shoemaker:Well, you're certainly welcome. I am grateful to you for putting on this show and this is an exciting opportunity for me to give something a little different in the way of a podcast.
Melanie Pensak:Yeah, there are a lot of places online where people can connect to you and hear you speak about your significant scientific work. And today, my hope is for us to really get to know a little bit more about the person behind the practitioner and to hear more about your experiences and insights from working with this population for all these years. So let's go way back. I'd love to start out. I'm curious to know, did you want to be a physician or a doctor as a child? Were you interested in biology
Dr Shoemaker:as a kid? When my mother would come home from school, she was a kindergarten and pre K teacher, at age three, she would be dead tired, and I was the third of three kids, so I was raring to go, and let's play bird lotto, let's play animal lotto. I don't know where she found the anime, but we played Bird Lotto and Animal Lotto. It's an example I'd give best to my interest in nature and my interest in things that are living and those, all those, all those little pictures of bisons and lynxes and yellow jackets has, has stuck with me over the years. when I, Finished high school and was all set for Duke. I was ready to be a molecular biologist and started my research career and as a freshman looking at chemotactic responses of euglena, which is a green algae, to light. And they would move to light and we could look at the proteins involved in flagella, the little powerhouses, the motors of the cells. I didn't realize that I would be returning to flagella with the microtubules in 2023 as the answer to where we've got diabetic CNS disease. Microbial disorder. And here without knowing it, I was doing microbial research in 1969. ts it says that we all explore as we will keep on exploring until we reach the place. We started to know it for the first time and I'm knowing it for the first time. Wow. I was also microbiology and my father, on, on one summer break and said, why don't you just come spend a day with some of my friends at took at Carlisle Hospital? And so I'm like, you're a biologist, and sure, let's, let me have the microscope. So I start out in pathology, and we're looking at specimens. I'm saying, well, there's bar bodies here. This is, this is, this is a male. And he, oh, okay, that's fine. But that afternoon, I made rounds with Bill Shelley, who's the general surgeon, and I was hooked. My father had, um, I think predicted in his own quiet mind that that was what would happen. I stopped using my electron microscope and started using my stethoscope and felt that my career as an academic would take second place to my career as a family doc and a rural health experience was what I wanted. When I was in residency, I designed a health care delivery system for a rural network. It felt like a great idea to have specialists to be on their bicycles, and riding out to see the patients who were in far front counties. And Clark County is where I set up a clinic, and we had more elk in the county than deer, than people, excuse me. But it was quite a fascinating thing, trying to be on, not as the provider, but the producer of health care systems. I see now that desperately we need that organization and looking at problems of primary care, not just in the rural, in the woods, in the rural areas, but in cities and underserved areas throughout the U. S. So the work there is not done, Yeah,
Melanie Pensak:that's absolutely fascinating. So fast forward now to CIRS being discovered, all your work with CIRS, and you've created. training programs so that doctors can get certified in treating this illness and people can get more educated and being able to be guides and supports to people going through the process. how does it feel after all these years really watching these new doctors and practitioners commit and train and begin to practice the protocol and help
Dr Shoemaker:more people? there's, there's a depth of feeling. It's, it's a little hard to talk about. I had always said that the mark of an evolutionarily successful being is the success of the offspring. So I, I go back to that. I'm 72 and some days I wonder if I'll be 73 or not, but I'm hoping so, but nonetheless, I feel that, uh, some of the thoughts I had are worth keeping in the next generation, and that's, that's happening. people giving a lecture on CIRS and taking it beyond where I have is, is gratifying more than you can say. I guess I'm, I'm feeling like my father did when he's seeing me be a physician and not a researcher, but. The joy of having an input in shaping a brain has succeeded in bringing quiet times to me at night time, so I'm very grateful that people are following in my footsteps and enlarging the footprint and expanding the scope as we go, so that's even better.
Melanie Pensak:My favorite teachers across my life so far in school, and even from a spiritual perspective, they have all taught me how to see things in a different way. And I know that you are definitely helping people see things differently and impacting a lot of lives with that work. So thank you for that. Can you share any stories about maybe a patient that you've helped in their recovery that has touched your heart or that you remember across the years?
Dr Shoemaker:you had mentioned that might have been a question. I've been thinking about it. one of my index cases in using HLA to diagnose the syndromes came about with a woman who was, uh, kind of a big player in the chronic fatigue world, and she was staying chronically fatigued and was not doing very well, and I saw her in my office in Pocomoke, and it was clear to me that she didn't have chronic fatigue. She had, she had symptoms typical of what I thought Lyme disease would do, and I said, well, let's see if we can find Lyme in you. and so did Western Blots and did some better Western Blots and some of their not quite as good and did a couple other things and didn't really have anything until her HLA came back at 15651 and she was MSH deficient and so we looked for that dysregulated of innate immunity and HLA was positive and then trying to see what else is going on and her, her ACTH was, was sky high and cortisol was sky high. Well, that was not the way it's supposed to be. we didn't have TGF beta 1 then, but we had 9 was, was, was high, and her, she had a swollen knee, which I tapped that day, and the MMP 9 came back over 4, 000. And I said, you don't have chronic fatigue, you've got Lyme. And the diagnosis was made by MMP 9 and joint fluid and HLA. And she did have Lyme, as it turned out, and got better, responded to antibiotics, didn't need them for too long. And the protocol that I used to take care of post Lyme syndrome, is based on work that was done by researchers in Boston. Sam Donta is the one I remember best, and he got a patent on Lyme neurotoxin. if he's got a neurotoxin, I ought to be able to fix it. So sure enough, he used the protocol and she did intensify and used Actos with her and stopped the massive cytokine storm that she was having. He fixed that with five days of Actos as a run up Days back to start taking antibiotics again, and her brain started recovering. She was doing better and better, went back to school and got her college degree at Penn, and got her master's degree in counseling, and has recently retired. But that, from 20 years of someone who was neurotoxins. So you take away the toxins, her body is released from that drain and her brain can emerge and it did and she helped people for 20 years doing things that I never could do. So that was a goose bumpy story. I still get goose bumps about it. I have pictures of her in my in my one of my exam rooms where she's got her mortarboard on one side. I think it's on the right side where she had it. She graduated from college and then graduated from grad school. So it was it was really pretty neat. That's a beautiful
Melanie Pensak:story. Have you experienced CIRS in your life, or anyone close to you gone through CIRS, and what has that been like for you? Has that changed you in any
Dr Shoemaker:way? Well, I thought about this question as well. My first experience with biotoxic illnesses was looking at hysteria, which is a dinoflagellate. analogy. It's not an analogy, but it's like it. And this dino is, if you think about red tide in Florida, it was a fish killer. And, and Fisteria was well known for being a fish killer in, in the Outer Banks areas, the Neuse River and the Pamlico Sound. and I didn't know that the source of Fisteria's illness was not nutrients. All the experts said it was nutrients. And it wasn't because Blue Mold was making its rounds through the tobacco growing area of North Carolina. So they used the only fungicide they could to treat the Blue Mold. I mean, tobacco is 5, 000 an acre back then for income. It's a big deal. But the mold was ruining the tobacco crop. And so they used copper and diphtheric carbonates to treat the Blue Mold, which made their tobacco crop come along. but then in 1996, this is 93, 94 in the Neuse River, 96 is when I showed up in the Pocomoke River. That's, that's, I fish in the Pocomoke River, I catch crabs in the Pocomoke River, my friends are watermen, so they live on the river, and something was definitely new, and fishery had lesions, and they would act strangely, they would swim around in circles, they wouldn't run away, they wouldn't swim away from you, they would... Float and do this and so I started doing autopsies and fish and Eric May was a researcher from the University of Maryland Eastern Shore and he helped out and, uh, we saw we do a couple experiments because I thought permanganate would take care of a toxin that this thing was making. It was a gas with a toxin and he had some permanganate and I had two buckets or two big containers on fish place in Shelltown just down the river and we had fish with posterior areas. and lesions in the, in the, in the river water. Then we added permanganate to another, another category. The fish were swimming around in purple, but they were alive and doing fine. Uh, and then, uh, the fish that are just in the, uh, in the vat were, were, were all dying. So I was handling all these fish and I got sick. So the exposure to water droplets was not a good idea, and I started thinking I ought to be able to treat this illness since I had it, and my third patient was a nice young lady who had secretory diarrhea, and I couldn't fix all the rest of her symptoms in memory, and mood, and sweats, and pain, and all this, and cough, and respiratory problems. She didn't have a rash, but she did have secretory diarrhea, and bile salts are frequently the source of that, and we combine bile salts with colostyramine, it's an old family practice. trick. And I've been doing family docs for 25 years and by that time, it's no surprise. Here's your colostomy. she got better in two days and the diarrhea was gone. Well, that's, that's good. It's, it's great for treating diarrhea. She goes, oh no, my, my, my memory's back. My pain's gone. The cough's stopped. My headache's gone. I said, wait a minute, you mean this drug helped you feel better? She goes, oh yeah. So I tried it. It worked for me too. So I tried it for 200 more people and wrote the first few papers in the world's literature about acquisition of hysteria in the wild and treatment in the wild. And that was not a very popular idea. Hysteria, hysteria, it was, it was a little buzzword people use. They're making fun of people like me that said they were sick. The watermen, they were willing to take the, take the drug and would go get re exposed again and get sick again, take the drug again, they get better again. And it wasn't until 1998. that Ken O'Dnell, who was a PhD neurotoxicologist from National Health and Environmental Effects Research Lab in North Carolina at Reacher's Triangle Park, said that if you use visual contrast sensitivity testing, you could find an answer to the fisteria problem. He'd done that for the state of North Carolina. said you can because there are no markers that we had for for fisteria, nothing other than than being sick and getting better with colostomy. But with VCS, we could find a deficit in the mid range in sick people that control patients didn't have. When we treated them, the deficit went away and the symptoms went away. It was a marker. And so I got a chance to speak to some vendors at the Association of Retinal Vitreous Surgeon Ophthalmologists down in Florida. And here's the company, the Heidelberg company, says, sure, you can use my device. It's a dual laser Doppler. You can measure velocity of flow in retina in the neural region of the optic nerve head. Well, I don't know how to use this. We'll teach you. And so they did, and I did. And sure enough, The velocity of flow matched with VCS deficits, and when we treated them, VCS deficits got better, velocity of flow got better. We not only had a marker, we had a mechanism. It was cytokines piling up, blocking flow of elements in blood. That's where reduced red cell velocity was coming from. So that was, that was fun. We're making progress. How come only three people out of ten got sick and were swimming away at this point in the Pocono River where they had a big outbreak? I couldn't find it, couldn't find it, couldn't find it. In 2000, read a weird paper on HLA, Human Histocompatibility Locus A. Never heard of that before. No one's, didn't even learn about that in med school or anything like that. But here's a test that LabCorp did, so let's, let's, let's see, and the three that got sick had HLA all the same, and the seven that didn't, didn't have that kind of HLA, and Well, we tried this about 200 people, and now I found it was 4353, 11352B, two HLAs, and everybody who had that got sick, and then here's, here's the 11852B, and oh my goodness, I, I had a marker, so here am I now Thinking I've got a hold of Fisteria. We've got a bedside, non invasive, inexpensive, reliable, reproducibly reliable marker. We've got blood tests saying that we've got cytokines. We started doing cytokine testing and somebody called me from Florida. Well, we've got a problem with dinoflagellates in the St. Lucie River. Why don't you come down and see what you can do? Well, So I got exposed to St. Lucie River, and I got sick again. And so, sure enough, started sampling with pore water the areas. Have you ever made a mud pie when you were a kid and you had a little collection of mud and you squish it and the outcome would be water? Well, that water between the particles of the mud pie is pore water, P O R E. That's a reduced chemical environment. That's where copper was staying in its reduced form, not its oxidized form. And it's like, well, here, we ought to be able to sample pore water and find copper. And then how about dipyrocarbonates? Here was a paper. from the, the pedology, uh, field of soil science by, finding that, the, if you mix dithiocarbonates with copper, you started killing dinoflagellates. And I was like, well, wait a minute, you're, excuse me, killing rotifers that in turn would be eating dinoflagellates. That means that if copper and dichotic carbonate are in the poor water and there's a, a rain event or a wind event or a current event, and the poor water is stirred on mixing with a, with the regular water, that could cause a bloom if it killed predators of hysteria. And all we need to do is proof that. Well, we did. And long story short, is back to Shelltown, that's where I was finding that I could use permanganate to block the illness. And after I had permanganate in that valve, I didn't get sick again. So as time went on, I got interested in, in blue green algae. And, um, we had a bloom in one of our ponds in, in, in Pocomoke, and we had microcystis, one of the bad guys. So I called Wayne Carmichael and met him at some conferences because, this was a big deal. And he says, sure, I'll find you a microcystin. And I had it in my pond water. So I went and sat beside the water for three days, for eight hours each day, and read and did all, and got the nice wind blowing. By the third day, I didn't know where I was. I was thinking that if I was getting to get sick from, from microcystis, that I would expose myself to the aerosols. And that would make me sick and then I could take colostaramine and, and, and feel better. But there's a little voice that says, are you sure colostaramine is going to work? Well, sure, of course I was sure it would work. It had to work. And it worked in the wild and it worked on me. So the chapter in one of the books I wrote called Mobile Warriors in 2005, who would be stupid enough to do this? And it was me, but, uh, we had Lyme disease frequently in our place. And You know, it got to be that, uh, 1998, someone was getting sick, they had visual contrast deficit, they had symptoms, they were getting better with colostomy, they got sick again with relapse, but it was just all this moldy stuff in a closet that had water intrusion. It wasn't fisteria, it wasn't... Littlispromopsis or microcystis. It wasn't a dinoflagellate illness. It was, it was mold. And come to find out that they actually followed the same paradigm. In Thomas Kuhn's books, The Structure of Scientific Revolutions was written about that. And, you know, he talks about anomalies. These were definite anomalies in science. And if you keep on repeating them well enough and fix them well enough and repeat them well enough, then you've got a paradigm. So here I was, a little country doctor in Pocomoke, reproducing Thomas Kuhn's book, The Structure of Scientific Revolution. I know it's neat stuff, but the mold kind of got, got a hold of me big time. I got sick from mold as well. And then I found when I was in a water damaged building, there was a mold, but there was other things in there. And the actinobacteria were there, and that made me sick too, so, you know, I was kind of walking around, and what else can make you sick? here we got another toxin, another illness, and I can do that. And I've paid my dues and had pulmonary hypertension, which is one of the things that this illness can do to you. And I had been working with VIP and reading the literature that there's got to be a way that we can use VIP. Well, the doctor I was working with, the cardiologist, said, Well, why don't we, you know, we've already done your cath and all this stuff, and you've got pulmonary hypertension and systolic pressure went up over 100 in pulmonary hypertension. And it's wait a minute. And he said, why don't you put your things in order? Because there's nothing we can do to fix this pulmonary hypertension you've got. I said, well, VIP is supposed to fix it. I'll take some VIP and a dose of four doses a day was all I needed for my stuff. I took 28 doses a day, uh, and I had resigned from medicine back then. And it was just as well to find out something that, intrigued me more than making myself sick or making patients feel better. I wanted to make doctors feel better and started me doing research full time. teaching full time and here I am.
Melanie Pensak:I don't think a lot of people will realize how many times you've experienced illness from biotoxins and all the pieces that you've lived through that have helped to develop the protocol. It's so fascinating to me how these people just showed up in the world and called you up and it helped sort of with the next step and you certainly have nine lives, Dr. Shoemaker.
Dr Shoemaker:One of them came along with stachyboitrus exposure in the horse barn that I had built, um, and we had a leak. I hadn't done the roofing properly and opened it up and it's just black from wall to wall. And the next day I had a nosebleed. I rarely get nosebleeds and I, maybe I was picking my nose, I don't know. Second day I had a little more of a nosebleed and that went away. Third day I had a gusher. And to the hospital to go through the nose, but he didn't stop. And had four surgeries done on my nose to fix arteries and embolization and stuff in the radiology suite. And I'm saying, well, I've read about this stuff called DDAVP, which should, should fix a problem with one of those brands in five minutes. Can I take some? Oh no, no, no, we'll, we'll, we'll fix you here. So I get out of the hospital, and I have the blood type, I'm an O negative, but I'm also Duffy negative, Kel negative, and Lutheran negative. I'm a universal donor. I give blood to anybody, but I can't take blood from anybody. So I had bled out eight units, and it was hobbling around, a little sorry about all that, but sure enough found somebody else who had bleeding from Von Willebrand's profile, and this was acquired Von Willebrand, so I gave him DDAVP, fixed him in five minutes, and found out C4A, one of the compounds I was looking at, is in charge of, of uh, mobilizing multimers profile. Away from where they, they sit kinda sideline on blood vessels, uh, to get into blood clots and, and help heal. And so if you got too much C four A, you'll bleed. If you don't have enough C four A, you'll, you'll clot. So it turns out that in the Italian literature, uh, acquired von little re syndrome was found in one in 100,000 people and a couple people, a couple of papers these guys had written one in a thousand, a hundred thousand. That's, that's pretty rare. I started counting up the number of people that I saw because I started measuring and recording the Vaughn Willegrand's profile. I had 35. Out of 1, 300, 1 in 20, 000, 35 in 130, whoa, this illness is doing some heavy duty things, and so we started working on brains then, and showed that VIP also fixed Brain problems and, uh, nuclear atrophy in 2017. If you had multi nuclear atrophy, nobody fixed that. You might fix one nucleus that had an atrophy, a gray matter nucleus that had an atrophy, but not multiple sites. And so I was able to show that we could fix it with, with VIP. It was really pretty exciting. I think that paper is on the Tri Mole website. I urge you to read it. Published in 2017, because now we've expanded it to further work on the brain, and this is a breakthrough really by looking at atrophic, amyotrophic lateral sclerosis or Lou Gehrig's disease. Because one of the genes I was working with in the transcriptomics we do was uniformly elevated in people that had dementia and Parkinson's disease. So I'm getting Parkinson's disease. Why don't I try that? And so sure enough, we're able to show that a dieback degenerative disease, not just Huntington's Chorea and Charcot Marie Tooth, but also Alzheimer's and Parkinson's shows this defect in microtubule delivery of ions and nutrients in axons. And if you don't get nutrients to the axon, the synapse will start to die and then you start getting demented. We just need to prove that we can fix that. And the drug was used to fix the mi uh, the, uh, microtubules in Euglena in 1969. the, looks like it fixes people in 2023. fun. Wow.
Melanie Pensak:Are you, is that what you're most proud of regarding your work with biotoxin illness? Or what would you say you're most
Dr Shoemaker:proud of? I was most proud of making a, a bibliography, It sounds silly, but when someone wants to defend their, their research and criticism, having other papers and other authors support you and all that. What I'm doing is things there's nobody had done the same thing. Nobody could reproduce it. It took seven years before we could prove it before the copper theory was proven. I took a lot of flack about that. But, making a bibliography to withstand criticism is something I do routinely. Debbie Wagner has been working with me for 40, 41 years now, uh, 40, 41 years, that's right, and I like, she, she does bibliographies faster than anybody, and a bibliography has got yes, no, and the same subject about the same question, and 50 references at a time. We've got over 500 of those, so a lot of questions through research over the years, and the work habits. is, is what I used to say as a medical student at Duke, that if you can't get your work done in 24 hours, you might have to stay up late. Stay up late is what I've been doing.
Melanie Pensak:I was going to ask you how you handle the criticism and I didn't realize that the bibliographies came from that and support that. It makes a lot of sense.
Dr Shoemaker:Yeah, I used to say my back didn't bleed. It had been carved up so many times by one fan or another, but there's a guy named Stanley Music who, I think he's retired now, but he was a big deal in the public health agencies for the state of North Carolina, and he says, What's Shoemaker doing now? Is he going to find a cure for chronic fatigue syndrome? And the answer, Stanley, is yes.
Melanie Pensak:Grateful for
Dr Shoemaker:that. A little obnoxious that way, I must say, But in terms of your question, if you know what the illness feels like, and you're used to people looking at you, thinking, what are you making this up? You're just, just depressed and, is there something bad going on in your life? You got financial pressure, your marriage falling apart. what, what's going on? it's the biotoxin. It's inflammatory. And come to find out, in 2019, we published a metabolism book, a metabolism chapter, that CIRS, the Chronic Inflammatory Response Syndrome, was actually with C I I R S. So it was infection and inflammation, and then it was CIRMS with metabolism thrown in. And this is too many letters for the acronym, but the metabolism. And this role is hugely important. It's made the brain the critical issue. But when you, when you, the first day, in terms of how do I know how I feel, the first day I had someone who told me that they had a static shock when they tried to touch a doorknob. I said, you've got to be kidding me. This, this is the weirdest thing I've ever heard in my life. And coincidentally, someone that afternoon was coming in. And we were talking about things and I said, Hey, you ever get a static shock when you, when you touch light, touch a doorknob? He goes, don't you know? And so this is now one of the common symptoms. It's found in 41, 41, 44, 45 percent of these different cases. So between cyanobacteria, water damage buildings, and hysteria and Lyme disease, 44 percent of people get some static shocks. And then I started wondering, where's the static shock come from? And we can measure salt levels on children who've got cystic fibrosis. Their sweat is very salty. So I started measuring the sweat in people who had static shocks. It was very salty, so it was, their skin was a conductor. And so they had electrical current, it was discharged to a ground. And oh, that made sense. Of course it was real. But it's just, the illness is humbling because you never find all the answers out on the first day. And I still find new things every day. The microtubule deal was, has been just in the last couple of weeks and just exciting.
Melanie Pensak:It is exciting. I know everyone's really curious and excited to hear how that work develops.
Dr Shoemaker:Just imagine, what could you do if you start fixing dementia before it's dementia? We'd have a screen for it. We'd have a transcriptomic test. We've got transcriptomic tests for so many things now. And TUBBA4A, if we found that in association with DIBAC CNS disease, we're looking at a cure just around the corner. it'll take some science. It'll take some work. But just, just imagine. Wow, that'd be so cool. It would be
Melanie Pensak:amazing. So I'm curious, there are a lot of doctors out there that don't understand CIRS or choose not to learn about CIRS. And what would you say to them? What can non CIRS literate doctors do better?
Dr Shoemaker:In the emergency rooms, physicians are asked to do lots of things. And the CIRS patient who shows up in the ER with 25 symptoms. The doctor's attitudes, and here's an attitudinal problem, say, get this person out of my emergency room, which is where Gomer comes from, get out of my emergency room. So I would put him back in the emergency room and get a history from someone they called Gomer the day before. Only this time it would be a professional witness. professional patient who knew this history in and out for a CIRS patient. See how this guy would do with a history from a GOMER. And just see how about he ate a little bit of crow along with that. we used to think about West Nile virus killing crows. you do something about some attitudes. You think this person has got a diffusely positive range of review of systems. they do, they do. Fatigue and weak and cough and short of breath and red eyes and blurred vision and diarrhea, secretory diarrhea usually, and numbness and tingling and vertigo and executive cognitive dysfunctions all at the same time. And so that became one of the secrets on history. If you've got 8 of 13 symptom clusters, nothing else had that. No, no combination has had that. It's still true. So as part of the case definition we came forward for in 2003, it said labs the same as similar to those seen in published peer reviewed literature, and then the symptoms the same as or similar to those in published peer reviewed literature. Because by that time we had enough literature to say published things, and when people started arguing, which they still would, We had something to argue with, and that's, did you read this paper? Did you read this paper? In the old world, this didn't take too long before the lawyers found out, and oh my, if you had a wet building against a sick building, that means someone's responsible, means someone's going to pay for it. Here's the attorney, they're answering the call, they answer the bell, you can make money that way. that was, that was another story, but that was a big part of, of having to know the literature better than the next guy, because now you're going against medical experts. These, these are, they're cut above and country doctor better know a little bit more what he's talking about because he'll get excluded if he's not careful, uh, and it did happen a few times, but in 44 times over Darbert objection, I was accepted and nine times was thrown out. I'm hearing all the court cases with experts and. Going on now with presidents and all that stuff. I'm just saying I've been there. I've done that. But see, certain non serious literate doctors could make a history, come alive and see that they've never known about how to ask about unusual pain or sharp stabbing pain, never knew there would be some people that had TRPV2, nerve conduction problems, and water from a shower would hit their skin and hurt. you see the patient is telling you the truth, find out what the patient is trying to tell you. That's where TRPV comes from. It happens, it happens in Ciguatera as well. So I had the heads up. Oh, look at this. Maybe that's what's making the dry water droplet hurt. And sure enough, it did. And you hear something and you assume that they're right, who's the people are talking to you, as opposed to assuming that they're wrong. I've been making my career out of assuming people would be telling me the truth, and then I can tell the truth to doctors.
Melanie Pensak:I think that was one of the hardest parts for me with the illness was that going through that process and really feeling like I wasn't believed and I know a lot of CIRS patients will relate to that for sure.
Dr Shoemaker:One of the things that having had the illness does and having felt rejection and felt misunderstood is that you can say to a CIRS patient, you're not alone. And boy, is that a powerful feeling. You're not alone. It's three words. So that's it. And my favorite story about Pandora's box, Pandora opens the box and lets all the ills of mankind fly out of the box. And, all the other stories. But you know what the bottom of Pandora's box was? Butterfly. That butterfly was hope. Butterfly flew up. Give me goosebumps. Yeah, hope. And the first thing you need to do, I learned the hard way. I've, I've been a tough guy, but, the softness still there is when you give somebody hope and see that come through. And the other day, it was a woman had left her home for two years. She was sickened by it, and her children weren't, her husband weren't, and they looked at her funny, and she went everywhere and everywhere. She's from the Annapolis area, and I just talked to her, and her problem was actinomycetes, actinobacteria. And she, I made up a protocol. I always make up protocols. Say, let's try this, and we got the results back from her skin test, and her blood test, and looking for actinos in blood. And yeah, you can, actinos are in blood, and they really are. And the results came back in good shape. Do you mean I can go back? Sure, why not? It's still emotional for me. Yeah,
Melanie Pensak:the work is helping so many people. I remember whenever I finally got to a Shoemaker doctor, and I called the office and they said to me, We've seen hundreds like you. You're at the right place. And as sick as I was, bedbound, I really thought at 40, I was going to have to go into assisted living. I was so physically impacted to finally get to a place where I heard, yeah, you, we've seen hundreds like you, you're not alone. It was just enough, to be able to help me to keep going and get through. It's really powerful.
Dr Shoemaker:It gives you some compassion.
Melanie Pensak:Yeah, it certainly does. I'm glad that she found you.
Dr Shoemaker:She's happy.
Melanie Pensak:What is your biggest wish for the CIRS
Dr Shoemaker:community? I guess bibliographies is a great answer. nobody knows everything. And if there's 50 papers been written for about everything, just read'em, uh, bring'em, bring'em close. If you don't know what's wrong with a person, you may have to stay up late. if you know the answer, that doesn't mean you don't have to try to find the answer. Service community has got some of the most beautiful people in that I've ever met. People on the listerv, well, you're on the listerv. It's caring, compassion, confidence, three C's come to mind. And not everybody's cut out for that. I could have been doing electron microscope work and electron microscope wouldn't care or want me to be competent. Compassion for the machine wouldn't really be necessary, but it is to be a CIRS doctor, and I'm fortunate that I'm exposed to people who are on our listserv. I can post a pretty picture and say in this need, and someone says, that's God's work, and I can say, yep, but that's the kind of person I want taking care of a CIRS patient, not Ancelo calls them gomers. Yeah,
Melanie Pensak:I never heard that term before, gomer, and I've definitely, yeah, been that patient. And The doctors that do take the time to learn to really listen to these patients, man, they just keep digging. They keep digging and digging. I want to give them all golden shovels. Everyone keeps looking and seeking and trying to help people find relief. And they are a beautiful group of people that you've trained.
Dr Shoemaker:There are other groups of people that do some things that I don't agree with, um, Antifungals is probably the worst. sooner or later, someone's going to have to recognize that case control studies are necessary, science is necessary, people make up science, they tell stories. And for 20, 000, you can go to a place in Florida, you can go to a place in, in California. They'll be glad to help you lose, lose weight on your wallet. It bothers me like crazy. If you use supplements, that's fine. But don't tell the patients, hey, these are the best supplements known to man. You probably have to buy this. Just tell the lady at the front desk, she'll get you three bottles. I just don't think that's right.
Melanie Pensak:There's a lot of damage that can be done.
Dr Shoemaker:A lot of money to be made.
Melanie Pensak:And a lot of people that can get sicker and sicker and sicker if they don't get the right treatment.
Dr Shoemaker:you could ask me if I wanted to write a poem. Yes. I love writing poems. Haiku, my favorite, there's seven lines for the first sentence, five syllables for the second sentence, and seven for the third. So here, let's see how this goes. How do we answer questions about CIRS today? Data rules, not guess not lies. That is the
Melanie Pensak:perfect way to end this this conversation. Any other final words that you would like to share?
Dr Shoemaker:People like you are the real heroes of this story, because you come back, you give back. You've been sickened, damn near death. I don't think you know how close you were, but your chart knows how close you were, and you're giving hope and help and caring, compassion and confidence to the patients you work with. That's, that's, that's your gift. That's your reward. Thank
Melanie Pensak:you so much for validating the experience that I went through. I very much felt that experience, being close to death and There is something that sort of magically happens as you get to the right place and go through this recovery that you can't walk away from it, and you can't walk away from the others that are experiencing this, and I certainly don't want anyone else to have to get to the level of severity that I was in. And I do hope to continue to bring awareness to the world about CIRS and about your work. Your discoveries have really... greatly impacted and changed the lives of so many, and it's allowed me to heal and it's given me the ability to be independent and be creative and to engage with people again. So, on the behalf of so many, thank you for your commitment to this illness, and may you continue to heal in many ways and. I have no doubt you'll continue to uncover the mysteries of biotoxins and the brain.
Dr Shoemaker:thank you very much for the invitation. I've thoroughly enjoyed talking to you. Appreciate it.
Melanie Pensak:You too. Thank you, Dr. Shoemaker.
Dr Shoemaker:See
Melanie Pensak: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.