Learn more about Dr. Burt’s journey with HSCT and his latest book, Everyday Miracles (Ep. 96)

Warrior: Dr. Richard K. Burt
AI: Halter
HSCT: Pioneer
Superpowers: tenacity, resilience, curiosity, compassion, holistic approach

With gratitude for time to connect with Dr. Richard K. Burt and celebrate the recent publication of his latest book, Everyday Miracles: Curing multiple sclerosis, scleroderma, and autoimmune diseases by hematopoietic stem cell transplant, we’re sharing the following verbatim transcript of this conversation, the first of two featuring Dr. Burt. 

Zen Jen: So, welcome Dr. Burt. It’s such a pleasure and a joy always to connect with you, but especially to now share you with our listeners and our audience of the HSCT Warriors Podcast. Welcome.

Dr. Richard Burt: Okay. Thank you so much for having me on.

Zen Jen: For sure. I’ve been devouring your latest book, Everyday Miracles: Curing multiple sclerosis, scleroderma and autoimmune diseases by hematopoietic stem cell transplant. Mostly just because it is such a page turner and engaging to read, and in my mind, it’s why we’re here today, to help others learn the importance of the text and knowing about HSCT for autoimmune diseases so that they can consider it as an option for treatment.

Zen Jen: I’m so eager to talk with you and hear your side of the story, and even what inspired you to go down the path of figuring out how to use HSCT for autoimmune diseases.

Dr. Richard Burt: Well, thank you. Kind of let me, predate that by saying why I wrote this book. And the reason I did is, I just felt there was so much misinformation out there.

In all fields, in the medical professional field, and by the lay public. And, um, I had been working in this area for, since I had the idea 35 years ago. I’ve been publishing medical papers and giving talks and doing medical textbooks and, uh, yet there[‘s] confusion and confusion in the media as well.

Zen Jen: Mm-hmm.

Dr. Richard Burt: That, you know, it was kind of like made the message of these, these advances to be, kind of drowned out. So, I thought it was very important to write an updated medical textbook, which came out in November of 2021. It’s 686 pages that can also be bought online by Amazon, but it’s a bit more expensive cuz it’s a medical textbook, and those things do tend to run a much higher price

Zen Jen: and a compilation of so many great authors in the field.

Dr. Richard Burt: Yeah. And so that included 140, professors, associate professors from around the world. So, it was an attempt to update the medical professional and research community on, why this is being done, on the different type of stem cells, the different regulations involved, and the results, and, and indications.

And that was an attempt to help people, professional people, to better understand it and to relieve some of the confusion that’s been sewn out there. But I also wanted to empower the patients and write a lay book that, a non-professional would understand and would enjoy reading… To help them clear up a lot of the misunderstanding that [00:03:00] exists.

And, you know, that arises, you know, for many reasons. But what I found in my career is, uh, of course, uh, information and knowledge is good. But limited information and limited knowledge is dangerous. And, uh, unfortunately in our media era of five second sound bites, that by definition, is limited information.

So that’s why I wanted to, do those, uh, two textbooks as well as, take the opportunity to get 12 new publications out now, in the medical literature. You know, the publications by themselves and medical literature just weren’t informing people or changing the field. So, the one, the medical textbook was for professionals in the field.

And the, lay book is for patients to know and to understand, for them to be aware and for them to be able to make a decision that they feel is best for them. I mean, the whole idea that I, and I bring this out in my book and behind the Western foundation of law and our legal system is consent.

And, to be properly consented, you need as much information as possible. So I wanted to try to get that out to the layperson, as to how this field was developed. And, the way I did it was kind of in profiles of courage of individual patients because, you know, my patients came from everywhere, all around the world, not just within America.

Actually, most of my patients did not come from the area around where I was doing transplants. And, you know, these are people who just weren’t accepting the status quo of continued drug modifying therapy that slowed their disease but did not really reverse it. You know, they weren’t accepting that answer.

And so there was a lot of courage on those patients and determination and the [00:05:00] kind of neat thing about transplant is you do spend the, you know, three weeks with a patient, in the hospital going through the procedure so you get to know them, as, as well as when they first come to you, and during follow up.

And each patient’s story is remarkable. The hardest part for me was, you know that there’s so many patients that could have been in the book and, you know, unfortunately you do have to have a limit to the book. The publishing house wanted only 50,000 words,

Zen Jen: (laughing) right?!?

Dr. Richard Burt: I was able to get it up to 70,300 words before they put the breaks on me because, as they said, you know, people won’t read books longer than that.

So, but it, it was able to include, you know, the stories of 54 patients, and, you know, interspersed within the development of the field for five different autoimmune diseases. The, you know, one that the biggest section has to do with multiple sclerosis and the second biggest section is systemic sclerosis.

Scleroderma, because [00:06:00] I had completed, the world’s first, randomized trials in those studies showing large superiority for transplant. But, also I wanted to explain to patients that, you know, there’s a big misunderstanding out there by everybody virtually, that it’s the stem cells and the stem cells are therapeutic, and they’re not. They do not regenerate neurons or oligodendrocytes or repair myelin.

They’re just a supportive blood product. That the efficacy, and the toxicity arises from the conditioning regimen. And, efficacy also rises from patients selection predominantly. Those are the, the main things that determine the outcome of this treatment. And once you perfect that, you can have these remarkable results.

And one of the things I found in, in writing this book is, you know, I just started randomly contacting patients, some of whom, you know, had the transplant 15, 20 years ago. And, just on randomly calling people, I [00:07:00] was amazed how everybody wanted to be included and, how the people I called, were still doing very well,

Zen Jen: mm-hmm.

Dr. Richard Burt: That far out from transplant, cuz obviously we weren’t seeing ’em anymore. You know, why should they pay the expense to fly to where I am, and then go through those procedures, you know, if they got better and stay better and, and didn’t need any medications. It’s good for them to finally be free of the ball and chains or tether of the medical system.

And so just talking with them, I realized, my gosh, this is really what I want to achieve when I first had this idea over 35 years ago. And so that was very rewarding. It also made me realize that somewhere, you know, I, I need to really find the time or set aside the time to write, long-term follow up on these patients.

Because when I first, you know, developed this or, approached people about doing this, you know, the, the medical community just thought it was [00:08:00] not a good idea. And, uh, now I think with the results that have been published, they’re somewhat gradually coming to realize the efficacy of this therapy and the advantage of it.

But there’s still, I think this resistance. Oh, well they’re all gonna relapse. Which is interesting, cuz when you do drug trials, they give one to two-year follow up and that’s kind of it

Zen Jen: and, that’s enough.

Dr. Richard Burt: and you’re kind of dependent on the drug and they’re not looking at reversing neurologic disability or getting you free of the medical system.

And so, you know, a, a publication showing those long-term outcomes would be, would be terrific. Now, I put the caveat out there that, you know, I was just randomly calling people. I didn’t do systematic

Zen Jen: sure.

Dr. Richard Burt: analysis to get the exact percentages, but generally if a patient relapses, they will recontact me, and after, you know, we find that relapses after five years is very unusual. Nobody tends to recontact, with the exception of one case I had a relapse at, 10 or 11 years. But, [00:09:00] mostly if you don’t relapse within the first, three years and occasionally out to five years, tend not to relapse. And with this particular regimen I use, you know, about 75% of people, don’t seem to relapse with the follow up we have on them and, return to, to a healthy, drug free, life without evidence of any new MS activity,

Zen Jen: which is why more people need to know about.

Dr. Richard Burt: Yes, it is, and um, so I, I explained in the book why I think it’s, it’s been …what’s retarded, this field, let’s kept it from going forward. And I mean, I mean obviously, it should move forward because there’s no license, there’s no money, there’s no patent for me for developing this. Other people can do it, but they’re not doing it.

And so I kind of discussed why I think that is in the last chapter, and it’s not any type of, you [00:10:00] know, malevolence by anyone or, or group of people that have, held the field back. It’s more kind of just, a mindset or misunderstanding in the way our medical system has been set up. And so, you know, I wanna, you know, at the end of the book you can read that, it should, you know, should find that interesting.

But I break it down into risk benefit, that is the concept of risk benefit. I don’t directly mention this in the book, but you know, there’s kind of this paternalistic, uh, attitude that, the doctor can assess your risk for you or somebody, like a, ethicist or your, insurance company or somebody sitting in their office can assess it for you.

And that’s absolutely not correct. They’re not in your shoes. They don’t know what you’re suffering. They don’t feel it, you know, it’s the patient, individual patient that should always have the right to determine the risk benefit of what they’re doing, [00:11:00] provided they’re properly informed of, of all the risks.

And, not the government, not some insurance company, not some bureaucrats sitting in their office. You know, that is the foundation of Western law. It’s consent, it’s your, that’s the difference, and I bring that out in the book. The difference between a gift and stealing, is only consent.

Zen Jen: Mmm.

Dr. Richard Burt: The difference between making love and rape is consent. And the difference between a physician or a surgeon when they give a medication or do an operation, uh, the difference between them assaulting the patient and treating them medically, is consent. Consent is the key, to what, to what, we do. And that consent needs to come from the patient who receives that treatment or interacts with that system, not from some independent body, that assumes this paternalistic or colonialistic [00:12:00] attitude towards the person.

And I, you know, even bring out a story in there at the Vatican where I give a talk and they had this ethicist from a prestigious American university talk, and he was very critical of this. Got in an argument with one of my patients there. And so the patient finally said, why don’t you believe me? Why don’t you believe these publications?

And he said, well, he just doesn’t agree with the risk benefit of it.

Zen Jen: right.

Dr. Richard Burt: and I thought to myself, what the ethicist, and this is a quote ethicist. What he’s missing is the concept of consent. That is the individual patient who is suffering this to make their own decision. Because once you’re in those shoes, things look very different than when you, your yourself, aren’t forced to walk that path and look at your life only further declining, despite all the suffering and expenses and treatment you’re getting.

So, I think you know, kind of from a societal perspective, we need to get back to this concept of [00:13:00] consent of the individual. And so that was number one, risk benefit. Number, two is kind of homelessness that, you know, I, I was not trained as a neurologist, nor a gastroenterologist or a rheumatologist, yet I developed this therapy for those diseases.

And in fact, there is, no National Institutes of Autoimmune Diseases. There are no centers around the world or around America that are, an institute of autoimmune disease that I’m aware of, and there’s certainly no federal funding for that. Unlike a National Cancer Institute or, at the NIH, or you know, cancer centers around the country funded by the NIH.

And so, autoimmune disease are orphaned off into all these different, divisions and departments and, you know, I think that’s kind of somewhat retarded the development of this field. If there were institutes autoimmune disease within which there are divisions of cellular therapy, hematopoietic stem cell transplant, as well as other cellular therapies that are being developed for [00:14:00] these diseases, I think would help, you know, accelerate, advances in the field.

Because as it would stand, you know, subspecialists that spent their career or life working in developing, thinking about a given autoimmune disease such as Scleroderma or MS, they, they don’t understand transplant, which came out of hematology and they view it as all one kind of treatment and they’re hesitant to refer their patients to it.

You know, they’re in a different fiefdom or a different silo. And, transplanters unfortunately are in, also in a different silo, which is transplanting leukemias. And so, they’re used to thinking these aggressive myeloablative of regimens. And, you know, if you make that transition like I did, where you’re in between those two silos, you can focus on safer non-myeloblative regimens and, and why that is the rationale for, for what we need to do for transplant.

So, a [00:15:00] myeloblative regimen is a cancer regimen that totally destroys the bone marrow, that makes all the cells in the blood, your immune cells, but also your red blood cells and platelets. And, of course if you can’t do that, you won’t live and you have to give those stem cells back that you collect from the patient or you’re not gonna recover.

Non- myeloablative means you target only the immune cells. You do end up suppressing the bone marrow, but it doesn’t kill it. It’ll recover on its own. You don’t have to give the stem cells. It’s just a supportive blood product that hastens your recovery. And so it’s a prudent thing to do, but it’s not necessary. And so, you can make your regimen safer, without mucositis that you get with cancer regimens, without injury, or minimal risk to other organ systems, and just focusing in on the immune compartment to knock it down then allow it to rapidly regenerate or reset with, what appears in a majority of patients, if you get the regimen right and patient selection right, can be very long-term, remissions that really change natural history of [00:16:00] these, this disease.

Now, in my medical publications and talks, I never use the word cure. Yet, in the lay book on the title, I put cure because I want to catch people’s eyes. But I put the caveat in the book that, you know, we have these very long-term remissions now, sometimes out to 20 years, 10, 15, 20 years. And the majority, with the right regimen, with the right selection of patients… that have, have gotten better, stayed better, and haven’t relapsed.

But, you know, but there is no definition for a cure for these diseases cuz nobody ever had that luxury to define it, so.

Zen Jen: Right.

Dr. Richard Burt: You know, we can’t say that. We can say it’s changed the natural history and once you’re thinking, 10, 15, 20 years with no evidence of recurrence and, and you got better and stayed better, you know, perhaps we have found the right door that, where you can start thinking in those terms, or at least apply this treatment for these diseases, that are having, you know, a, a more aggressive course. So, um,

Zen Jen: And so on that note, what do you think needs to change, in order for more physicians [00:17:00] to, as you say in your book, treat the patient from a more holistic perspective, or at least like even in medical schools, encourage the physicians to be working more transdisciplinarily, if that’s a word, to just connect outside of their subspecialties and begin understanding that these approaches to treatment have such potential.

Dr. Richard Burt: Yeah, well, you know, all physicians want the best for their patient, but they’re trained in certain ways and it’s kind of, you know, you get busy in your life, and you get down in one type of silo, and it’s, it’s hard to,

Zen Jen: It’s the way we’ve always done it.

Dr. Richard Burt: Yeah, it’s hard to see things outside of that. And so, it’s kind of a system itself. And so I bring that up in the other two things that I think are hindering this field, and, one of ’em I call eyes wide closed.

Zen Jen: Mm-hmm.

Dr. Richard Burt: And that’s where, you know, you’re trained a certain way, and I’m [00:18:00] all for education and information. I’ve spent my life involved in that, and also, constantly learning and, developing these new treatments and then learning from my patients how to perfect it and refine it from, you know, the results of how they’re doing.

But, what I was thinking I’d bring out there is like when I was in medical school and graduated from medical school and at the ceremony for the graduating class, the speaker congratulated us on our accomplishment. It was definitely a lot of hard work and, sacrifice. But, he said half of what we taught you is wrong. We just don’t know which half. And to me, that was like an eye-opener because in medical school there’s so much to learn. You just kind of force fed and you memorize, memorize, memorize. But a lot of these quote memorize facts actually, are wrong and misdirect you. And so, you know, you’re not necessarily taught to think independently.

And, [00:19:00] that’s something that you always have to kind of maintain in yourself to question and think, and that’s really what science is. Science should never be used to bully, or intimidate, or silence anyone. It should be used to question and rethink what you’re doing, and that’s where I bring out how I was taught at the NIH working in the lab, talking with the lab chief. That research is repeating the search. It’s re-searching.

Zen Jen: Mm-hmm. Right? Trying to prove that what you found is valid over, and over, and over.

Dr. Richard Burt: Right. And so part of this is, you know, minds kind of get locked in certain paths instead of rethinking. And then when you come from the outside of the field, uh, you’re then challenging the elites in that field and they’re gonna be naturally skeptical cuz you don’t have their pedigree.

So I think that’s, you know, kind of a resistance that, that you come up to. And, you know, as I said, [00:20:00] Virchow, a quote from Virchow, you know, the founder of, pathology, you know, he said a, A good doctor treats the disease, A great doctor treats the patient.

Zen Jen: Mm-hmm.

Dr. Richard Burt: and there’s a lot of truth to that. But, medicine has become so, subspecialized with so much knowledge given one area, you end up really focused in one area.

So, I think when you’re, jumping across those silos or areas, you’re given an extra high bar to, to leap over. And, and that’s kind of, I think probably one of the things that has held us back. And I think just education, is, is one of the ways to help come around that, and not just educating the medical community, but educating patients.

Zen Jen: Right. How to ask the questions.

Dr. Richard Burt: Yeah. It’s their life. It’s their disease. It’s, they are the ones suffering through this. They’re the ones asked to find the resources to deal with this. So, you know, they’re, [00:21:00] they’re the most important, who need to be informed, and that’s why I want to get this, lay book out there.

And then the final, of course, I call financial toxicity. And what that is, is that as physicians, we’re never taught the cost or price of something for the patient, whether they’re paying, or insurance is paying, or society is paying. And I think that has allowed just medical cost to far exceed inflation all the time.

And, you know, the danger with that, we should, you know, we should understand, the cost effectiveness of therapies, that is the cost of this therapy compared to another and the benefit for the patient, and make the patient you know, aware, but those publications we’re just not taught that and, unfortunately in this age, more and more physicians are just becoming employees of large institutions, hospitals, whatever.

And they’re pushed to generate, billing revenue, RVUs, and at the end of the year, they get a bonus for the more [00:22:00] they bill. Well, that’s not really what medicine should be. And, you know, if your patient doesn’t have financial security, they don’t have medical or psychological security either.

So, physicians need to be independent professionals who can protect and advise their patients through the healthcare field, because medicine is a profession, but healthcare is a business. And much like a lawyer, protects their client, and if a lawyer is an employee of the judge or the prosecuting district attorney, there’s no way, there’d be such a conflict of interest that he could protect his patient.

So, physicians need to be independent professionals, not employees, and then focus, not just, and be taught, not just the best, medical, care, but, also protecting the financial interest of their patients. Because I explained how transplant is so cost [00:23:00] effective compared to these drugs. And I actually show in the MS chapter how all these MS drugs are about a hundred thousand dollars a year and which is what a non-myeloablative transplant is, and then you become, the majority become free of drugs long-term. So, it’s a tremendous cost savings, for the patient, for society, yet it doesn’t take off. And I think one of the things that would be good is, you know, we know you need to do a phase one, phase two, phase three trial, phase three being randomized, but then it kind of stops there.

What we need to do after that is have publications and cost effectiveness comparing different, therapies that are effective for disease. Not, in any way to ever say you’d wanna give the cheapest to anyone. No, you don’t wanna do that. You want to give the best, cost- effective therapy to a patient. It’s like if you take your car into someone to fix it up, and it just needs a tune-up, and you come back and they put new tires on, they put new brakes on that you didn’t need, they put in a new hydraulic system, and in the tune-up they put in spark [00:24:00] plugs that were built in Italy for Lamborghini’s and cost an incredible amount of money, and they hand you the bill, you’re gonna say, no, I’m not paying for that.

And you know, that’s what’s going on in medicine. And in fact, you’re getting billed by physicians who have no idea what those bills are. And that is something that our system needs to tweak because as I bring out in the end, you know, how to… medicine has become so complex and so invested in itself, it’s hard to change it or hard to think about a constructive way to bring about change. In fact, you know, I bring out maybe as a society we could focus on four things that it should be, you know, advanced, affordable, accountable, and all- inclusive. I call that the four A’s. Those goals however can compete against each other.

Zen Jen: Mm-hmm.

Dr. Richard Burt: Such that if it’s all inclusive, you may not get the most advanced and best care, because no matter whether you’re dealing with the government or insurance company, there’s [00:25:00] not unlimited resources. But if we start there and then we figure out how, to achieve that. The way to achieve that is put checks and balances on each of those, and one of the checks and balances that is missing is on cost effectiveness. That is the benefit versus cost of the treatment. And if those were required to be published out there and made available to patients and physicians, and the physician was an independent entity, not pushed to bill for some big institution getting a bonus as they achieve it, or being penalized if they don’t, but focused on their patients.

And the reward is, you know, patients will spread by word of mouth if you’re doing the right thing for ’em, and then you’ll, you know, get more patients and be more successful. But if, if we incorporated that in the training, and in the publication process, if large journals like New England Journal, and JAMA, and Lancet in the medical field were forced to publish cost-effective analysis, it would, you know, I think help put a [00:26:00] check and balance on these runaway medical expenses, that are going on in the medical system.

So those are kind of the, the four things that I’ve brought out at the end of the book that I think could help change, what is holding this, this field back and you know, because, a lot of people say, well, it’s the FDA or it’s a pharmaceutical or a company or whatever. And no, it’s not really that.

It’s the structure of medicine itself that needs to be tweaked and improved, and a lot of that is, obviously beyond my ability or authority to do that. But I could bring that in the book so that other people can start thinking about it as well as, you know, one of the reasons I had to bring that out is at the end of talking about the results of these five diseases and how patients are doing, you know, one of the big questions that come to be, well, if this is true , why isn’t everybody doing this? What’s going on? So of course, you know… they could say, well, this is just science fiction. You wrote a good science fiction book. And, but that’s, [00:27:00] these are the real results. And so that’s why I had to explain that last chapter, why I think this is being held back.

And it’s certainly not anything intentional by any one group, but it’s the way our system has ended up being structured and,

Zen Jen: now broken

Dr. Richard Burt: is, is marching forward, kind of trampling over the individual patient themselves. And that needs to be tweaked, and I hope it is. My role in all of this is just to get the information out there after showing how successful this can be.

There are risks with it. Definitely are. Patients have died and I bring that out in the book. And that’s also why I argue for these non-myeloblative regimens, they’re less risky, they’re safer. And so, I’m kind of looking back at the field and where it’s going, and it’s never where… I started it, but it’s never where I wanted it to go, where NIAID’s pushing these myeloblative regimens, which are more dangerous,

Zen Jen: right.

Dr. Richard Burt: More risky, more toxic. And they’re not shown to be any better than a [00:28:00] non-myeloablative, and they don’t, the rationale, you can make a non-myeloablative even more immune suppressive than a myeloblative, so that there’s no rationale to do it.

But it’s, it’s moving forward doing that. And they’re twice as expensive as non-myeloablative transplants, and,

Zen Jen: twice as toxic it seems,

Dr. Richard Burt: and, and they’re just more potentially dangerous. So, it’s like this, this field, I’m the one arguing, you know, when I first started, people thought it was too dangerous.

Now I’m the one here saying, no. The way it’s going forward is too dangerous. This is how it should be done yet, you know, people don’t seem to listen, so I thought the best way is to inform the patients, and that was the goal of this book. So, the patients have knowledge and can help to change, what is going on in the field of medicine.

Zen Jen: Education is key.

Dr. Richard Burt: Yeah. So, and I’ve kind of come to the point, you know, I’ve done all I can do. If this doesn’t succeed in, opening eyes and changing things, I don’t know what will anymore. [00:29:00] So, but you know, that was my goal, to get a major medical textbook out and get the lay book out because doing these medical publications, giving talks to medical societies wasn’t doing it.

And there was tremendous misinformation just generated out there. Which, you know, when you actually do it and you know what’s going on, it just causes you to step back and raise your eyebrow. And that information came from every direction, misinformation, including media and, you know, physicians and, you know, sometimes, patients themselves.

So, I thought it was best to, to get this out there so people understand it and help clear up, misdirection that’s just been put out there with people who, I don’t think they mean bad, but again, limited information is dangerous because

Zen Jen: absolutely

Dr. Richard Burt: you, you come to conclusions and directions that are not correct and

Zen Jen: and that’s part of the reason I started this podcast, so that

Dr. Richard Burt: yeah,

Zen Jen: people could begin to better trust the [00:30:00] information they were finding in those Facebook groups or online, right?

It’s tough to know who’s behind that comment. And the comment is one sentence long and, and, I need to know more. And so maybe hearing people’s stories, maybe hearing people’s journeys, spoken from their own voice. Right?

Dr. Richard Burt: Right.

Zen Jen: Might help people find some sense of trust in what they’re hearing and learning and that maybe in hearing from 90 plus individuals that I’ve interviewed, and that every story is indeed unique, as you mentioned, right? That maybe we find some commonality, and maybe we find strategies to help with that self-advocacy, which is so difficult for so many people, especially when they’re stressed because they’re facing an insurance appeal, or stressed because they’re changing medicine and it doesn’t seem to be working, and stressed because they just don’t know what to do next.

So, I think your book is really going to help. [00:31:00] With all of those things, spoken from the professional standpoint that hopefully people can trust your voice.

Dr. Richard Burt: I hope it does help and, that it, you know, not just help individual patients, but helps in some way to modify this bureaucracy of medicine, to refocus it back to the patient in front of you.

Because ultimately, if you’re not helping that patient in front of you, you’re failing. And, that needs to be, to be what everything comes back to.

Zen Jen: You’re just the best doctor I know, and I appreciate you stating that so articulately and sharing so much with us, in this brief time we have together. I do want to acknowledge that we were scheduled for just a half an hour and we’re past that now.

We also have time set aside Friday that we can either [00:32:00] continue through this conversation, if you have the time now, or reconnect again Friday to tackle some of the other questions I have for you.

Dr. Richard Burt: Let’s, let’s go on Friday. So, um, people have a little, uh, time to digest what was said here,

Zen Jen: right? No, this is, this is great. I think it’s a great intro to why they need to read the book. And then I’m curious about your next steps in research and, all of that, so,

Dr. Richard Burt: Good. Well let’s take that up on Friday then. But I really, you know, everybody that’s read the book that has talked to me, has really enjoyed it and I think what makes it are the journeys of each patient.

And I wanna reemphasize, cuz I’m trained as a physician, in confidentiality never to release medical information on anybody. And you shouldn’t, if your patient’s gonna trust you, I

Zen Jen: Right.

Dr. Richard Burt: Each patient I contacted, I emphasize it’s their choice. They don’t need to do this, no obligation to me. And that I co-developed it with [00:33:00] each patient who then, had an opportunity to read what was written to make sure they’re comfortable and okay with it. And I gave, I removed all last names and gave every patient the option of a pseudo first name, or they could, if they wanted, use their real first name. And then I say at the beginning of the book that I will, you know, never confirm, deny, or add anything more to what’s in each patient’s story.

That, that is a patient story, and that is, their right to elaborate on more or to come forward, or not as however they choose. But each patient signed, written, consent and was aware of what was written and, okayed it and helped in the development of the story. So, um, I think that’s very, you know, important, to always, maintain that confidence, and trust in privacy with your patients. But that’s how I was able to do it, to get those stories out there in what’s really a profiles of courage, and that, as a matter of fact, I almost called this, [00:34:00] profiles in courage, but you know, John Kennedy wrote a book called Profiles in Courage that I had read at a young age, and so I didn’t wanna copy that title. And the title I chose, it was actually Kate, my nurse, who suggested this title cuz Everyday Miracles cuz she said a patient called her one time and she was talking to the patient and the patient said to Kate, what is, what is it like working with Dr. Burt, and before she answered the patient said, I bet it’s like watching Everyday Miracles.

Zen Jen: Mm.

Dr. Richard Burt: And so, you know, Kate told me use that as the title, and, uh, that’s what I, uh, that’s how it ended up being titled Everyday Miracles.

Zen Jen: I’m so grateful for Kate and her support of you and your work over the years and

Dr. Richard Burt: Oh, me too.

Zen Jen: Oh, she’s just been a phenomenal support.

Dr. Richard Burt: Yeah. Too many times you feel like you’re in the, uh, UFC octagon and, uh, you know, just to have some support in your corner is a, is uh, such a godsend.

Zen Jen: Well, especially for you to be so [00:35:00] isolated in everything you were doing, and to work for a decade and be submitting publications and keep getting turned down. I don’t know how you kept up and I’m so glad you did, so I appreciate

Dr. Richard Burt: Three decades.

Zen Jen: Yeah, I appreciate your persistence.

Dr. Richard Burt: All right, well thank you so much and we’ll chat again.

Zen Jen: We’ll connect again soon. Thank you so much Dr. Burt.

Dr. Richard Burt: Thank you for getting this information out.

Zen Jen: You know, HSCT Warriors, we are an education based nonprofit and the whole point is to help promote awareness that this can be considered as a treatment for autoimmune diseases. More people just need to know the facts so that they can make the best-informed decision for their care.

Dr. Richard Burt: Alright. Thank you.

Zen Jen: Take care, Dr. Burt, we’ll talk soon. Okay.

Dr. Richard Burt: Bye-Bye.

Tune in next Wednesday to hear more in a second conversation with Dr. Burt. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Resources:
Everyday Miracles: Curing multiple sclerosis, scleroderma, and autoimmune diseases by hematopoietic stem cell transplant (2023)
Astemcelljourney.com

Connect with Ali and celebrate launching season 10 of the podcast (ep. 95)

Warrior: Ali Strong
AI: Multiple Sclerosis
HSCT: November, 2017
Superpower: Acceptance

What do you do for yourself that brings you joy? Are you someone who accepts moderation? To what extent do you find balance in life?

Check in with Ali Strong to recount her experience finding her way to and through HSCT and learn how she is feeling now at more than five years post-transplant, including her struggles with menopause, disordered eating, and mental health. Join Ali and Zen Jen in discussion about Dr. Burt’s latest book and what’s to come with the podcast.

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Revisit Zarko’s journey to HSCT and find joy with what is (S7 replay, part 1)

Warrior: Zarko Bilal
AI: Relapsing Remitting MS
HSCT: April, 2021
Superpower: positive thinking

When did you start to figure out the important things in life? How do you overcome fear of the unknown? How do you keep your mentality in tact?

A black and white photo portrays a man sitting at the edge of a pointed ledge as though he is thinking. The HSCT Warriors Podcast logo at the top of the page frames the question, How do you overcome fear of the unknown? Details about the interviewee, Zarko Bilal are offered in the bottom right corner, include his autoimmune diagnosis of multiple sclerosis, when he had HSCT Warriors in April, 2021, and his superpower of positive thinking.

After a happenstance diagnosis of MS, Zarko initially held on to the hope that his symptoms would be a one-time hit of CIS. Easy to rationalize because of all the stress he experienced, he recovered fairly quickly and set out on his career path as a new attorney. After a year, the disease caught up with him, and unfortunately he noticed new symptoms that helped confirm his diagnosis. As he consulted with research about the disease and various treatment options, he found HSCT and asked two different neurologists for their opinions.

Tune in to the first of this two-part episode to learn more about Zarko’s plans to pursue HSCT and how they were delayed by covid. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Reconnect with Samantha along her journey from Melbourne to Moscow for HSCT(S7 replay)

Warrior: Samantha Lakey
AI: Primary Progressive Multiple Sclerosis
HSCT: July 5, 2021
Superpower: eating

Are you someone who believes in fate? How do you recognize joy in yourself?

Only after Samantha endured a full-body seizure and spent weeks in the hospital did she finally receive a diagnosis for symptoms that doctors continued to brush aside, even though she had been struggling with fatigue, insomnia, numbness, nerve pain, and loss of balance, loss of vision and taste, tremors, and more for nearly two years. With the proper diagnosis, Samantha and her family were soon connected with individuals and resources that pointed her in the direction of HSCT, including a personal connection with someone who had been through HSCT seven years prior. 

Tune in to learn more about navigating the possibilities of HSCT from Australia, Samantha’s experience with traveling to Russia for HSCT, and how she is faring just three months post-HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Revisit Amy’s preparation for HSCT and be inspired to move beyond judgment (S7 replay)

Warrior: Amy Capel
AI: Multiple Sclerosis
HSCT: scheduled for October 2021
Superpower: Thinking

What is your response to the judgment of others? To what extent do you control your mindset? Are you committed to eliminating negativity?

When Amy was first diagnosed with multiple sclerosis, she not only struggled to understand the disease, she ended up struggling with a storm of negative side effects from the first medication she tried. Having a friend who went through HSCT five years ago, tune in to learn more about why Amy is just now pursuing HSCT, how she is navigating the opinions of her doctors, and how she is committing to making the best decisions for herself and her family. 

Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

Reconnect with Graciela along her journey to HSCT in her hometown of Monterrey (S7 replay)

Warrior: Graciela
AI: Multiple Sclerosis
HSCT: January 2021
Superpower: value for life

How do you find peace of mind? Do you feel supported by family and doctors? How do you explore purpose in life?

After initially being told her symptoms were all in her head, Graciela received an apology from her neurologist along with her diagnosis. She was presented with options for treatment including disease modifying therapies and the extreme option of HSCT. When she further explored HSCT as an option, she learned that Clinica Ruiz offered the treatment in her hometown of Monterrey and she immediately connected with family to learn more.

Tune in to learn how Graciela kept a positive attitude and mindset to help her take on anger, fear of the unknown, thyroid issues, and covid. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today’s episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts.

It has been great to connect with Warriors worldwide, so please reach out if you’re interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you’ll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind.  Be well.

_________________________________

Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.