MS GYM PODCAST: DR. RICHARD BURT ON HSCT FOR MULTIPLE SCLEROSIS - PT 3

Welcome back to our 3rd and initially unplanned episode with Dr. Richard Burt, author of the recently released book, Everyday Miracles and the OG provider of HSCT here in the US.
Let me explain why we thought it would be useful for our listeners, as well as Dr. Burt, to come back and re-hash some of Dr. Burt's touch points from the first two episodes. In particular his stance on NOT treating PPMS and non-active SPMS with HSCT.
You see, after the first two episodes, I witnessed rumblings of concern and discontent within the online HSCT community. I belong to multiple HSCT groups and most had at least one or two conversations going on addressing Dr. Burt's most recent interviews, including ours on this podcast.
So, who was most concerned? Well, primarily PPMS patients, and non-active SPMS patients who are either considering HSCT, are already booked to have HSCT or those who've recently had HSCT. I 100% understand how Dr. Burt's stance on the efficacy of HSCT on their types of MS would have been reason for pause. Knowing that, I felt a responsibility to revisit the topic with him and drill down on the details.
It would also give us a chance to ask him a couple of questions we missed on the first interview, like dietary restrictions before and after HSCT as well as questions on second transplants.
We feel so fortunate that Dr. Burt graciously agreed to come on again and address a lot of these pressing issues.
Also, if you hold on until the end, Jodi and I have a short chat about what we took away from today's interview and recap our thoughts on our entire experience with Dr. Burt.
Because she and I have had HSCT, and each in different facilities, Russia and Mexico, we have a unique perspective and are able to relate to the concerns of an HSCT patient no matter what stage they're at in their HSCT journey.
EPISODE NOTES:
- 2nd transplants
- Were you misdiagnosed?
- Do you even have MS?
- Many diseases mimic MS
- The average percentage of patients who relapse post HSCT
- Explaining in detail his thoughts on treating PPMS and non-active SPMS patients
- What is RPMS (relapsing progressive MS) and would he offer HSCT to RPMS patients?
- The type of regimen he would recommend If progressive MS is treated with HSCT
- If not HSCT, what types of treatments does he recommend for PPMS and non-active SPMS patients?
- Does he have any dietary recommendations for HSCT patients either before or after HSCT?
- His thoughts on carbohydrates
- The Epstein Barr virus (EBV) connection to MS
- Following EBV titers after transplant
LINKS:
Episode #1 on KZbin: • MS GYM PODCAST: DR. R...
This episode, #2 of 2, on KZbin: • MS GYM PODCAST: DR. R...
Dr. Burt's book, EVERYDAY MIRACLES: www.amazon.com/Everyday-Mirac...
Dr. Burt's website: astemcelljourney.com/about/dr...
Email to apply for HSCT with Dr. Burt: [e-mail]

[@RB-go6ky]

I had a Stem Cell Transplant for Progressive Systemic Scleroderma. The Transplant stopped the progression of the disease. That was 2/22/2011. I am now 75 years young. Dr.Richard K. Burt saved my life. He book is great reading, I enjoyed it.

[@ernietollar407]

I'm through final chemo here in Puebla, neutraphils were 1500 yesterday morn but should be dropping.. Haven't lost hair yet - weird but I think it'll probably happen and is not an indicator in itself. I felt low yesterday - not bad just tired but after an early night i'm feeling oddly chipper. I would probably say i'm a young 59 - but that's in itself meaningless... I just am wondering why I not balded and feeling more depleted - I not worried per se but look forward to my next hema-consult in a day or so. I am So lucky to be receiving HSCT. I went from edss 2.5 a year ago to 3.5 ish (ppms) diagnosed aug '22 but definately was there forat least 5 years. now (sept '23). I'm intent on being happy and the tail end of the video chat with Brooke and Jodi rings as invaluable. I'll burn that in my mind's eye and return to Toronto as the sax player, flute player, composser, dad, husband, composer cook and more with renewed vigor.

[@jasonc5289]

I'm starting a new post because I think it's important. I've already established the fact that "we" aren't first. "We" aren't fifth, tenth or even 20th. I'd link the CNN article, but first they probably will take my post down and two there are so many articles if you look it's easy enough to find. Now, I went to the "best" for healthcare. He actually sits on the board of the MS Society. He said it was complex and I could choose from a number of drugs. He didn't tell me that I was low in Zinc. Not a word about Magnesium. He didn't tell me I was low in my vitamin B's. Nothing. He said I should take a drug and that was it. Then, I saw a Nurse, whoever you are, thank you again, and she told me to check my gut. When I left the country, my own country, not only did they tell me I had hypertrophic cardiomyopathy I also learned, from the Ukraine's, I had intestinal permeability. It is beyond frustrating. At first, I was so mad but now I'm sad. Really sad. There is a cure for MS. There is a cure for a whole lot of "diseases". I guess not in America but where do we rank. I think we should change. It's 2023.

[@demoskunk]

There is currently no cure for MS.

[@jasonc5289]

@@demoskunk There isn't? Is Dr. Wahls wrong? Is Matt Embry wrong? Is Dr. Gelenick wrong? If so, I should be dead, but I'm not. Do you know where "we" rank? Look it up.

[@jasonc5289]

@@demoskunk Is Dr. Hyman wrong? I can go on if you'd like. It is so weird. But, ok, there is no cure.

[@ph7346]

HSCT is the closest to a cure for MS. American Dr's / BIG PHARMA don't want you to know about it.

[@angelbabycards3595]

Honestly, It is now irresponsible to see a myriad of people, experiencing efficacy with HSCT, but the procudure continues to be denied in the US, literally for at least One Decade. Meanwhile, people such as Sandra Blair, simply spend a week or so in Russia, they come back, they begin to return to near normal function, dance on Dancing With The Stars, while the rest of us here in The States, prepare for Wheelchairs and Hospital Beds. Question: Is this truly the 1st World Country you thought it once was... ?? Getting ready to gather the cash I need to have the stem cell procedure in Mexico, and that's that! 😊

[@ph7346]

My had it done in Mexico in 2020. Blessed. F""k BIG PHARMA

[@AnnaDivorcedMSWithHSCT]

Selma Blair was treated at Northwest in Chicago by Dr. Burt. The entire procedure, even in Russia takes at least a month. PT and OT are a definite after. And yes, it should be here now. Transplanted in Puebla, Mexico, December of 2022.

[@jasonc5289]

Now, I had HSCT at Clinica Ruiz and then 15 months later I went to the Ukraine for fetal cells. The doctor I went to in the Ukraine told me I had intestinal permeability, a leaky gut. I took care of that I'm back. Now, where do we rank? I read that in 2017, "we" came in 54th. In 2021, "we" ranked 37th. Real studies. Good job, regardless.

[@jasonc5289]

And Dr. Wahls came up with a protocol. I suggest you look into it if you haven't already. Her, Dr. Hyman, etc...say that diet is key.

[@jasonc5289]

And I would say drink bone broth. But that's me. I wish the person that said they have PPMS the best of luck. I found out I had 41 lesions, I'm still stumped by that, once I figured out where we rank, the study from 2017 was shocking, I immediately booked my reservation at Clinica Ruiz because my Wife said she was going with me. I would have preferred Russia, that's where my family is from, but here nor there. Now, Dr. Ruiz was commemorated as one of the Mayo Clinic's greatest doctors of all time, I think he was 62nd, but whatever. There, I found I had hypertrophic cardiomyopathy, which not one of my "doctors" told me about. I had that confirmed by the Mayo Clinic. I'm still shaking my head. Anyways, I waited 15 months to go get fetal cells. There I learned I had intestinal permeability. The reason why I had MS. It's so weird. That's where Dr. Wahls, Dr. Gelenick, Dr. Hyman come in. I eat whole foods. Nothing premade. I wish you my best.

[@jasonc5289]

And Dr. Burt is great. One of the few in America. Kudos for having him on.

[@jasonc5289]

And, I should say I have the "best" insurance in the US. That is weird. We need to change now. It is so weird.

[@jasonc5289]

One more thing, the Ukraine's have figured out fetal cells in the mid-90's. They mapped it out in 1987. That's why what Dr. Burt did was so fascinating. He figured out how to do this with just hemopoietic stem cells. And, he did that without any help from the government. They, I think, want people to be sick. That's just my thought, though. Good job Dr. Burt. Actually, great job. I'm saying it again, it's time for a change. I figured when I was 5 I'd be traveling the stars. It's so weird. It's insane really. Anyways, if anyone's reads this, my best to you and know that there is a cure. Now, if we'd stop fighting wars and living like I figured we should the World can be so nice. Amazing really.

[@ahmedfowad2122]

What is your opinion regarding mesenchymal stem cells therapy for multiple sclerosis?

[@brookeslick6362]

I do not have any personal experience with MSCs, therefore, I cannot provide any insight.

[@jasonc5289]

@Ahmed Fowad The Panamians have been using them since 2009. Dr. Riordan. He's great. It's about 25 grand. Best of luck to you.

[@AnnaDivorcedMSWithHSCT]

Using MSCs, without HSCT first, is like pouring water into a bucket with holes. Fix the holes first. There is not any long term clinical evidence that mscs work long term.