Dr. Richard Burt (HSCT Expert) Interview
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- Опубликовано: 31 янв 2023
- This is a 75 minute interview of Dr. Richard Burt, a pioneer in Hematopoietic Stem Cell Transplant for autoimmune diseases including multiple sclerosis, scleroderma (systemic sclerosis), lupus, chron's disease, and chronic inflammatory demyelinating polyneuropathy.
We talk about his book "Everyday Miracles: Curing Multiple Sclerosis, Scleroderma, and Autoimmune Diseases by Hematopoietic Stem Cell Transplant" describes his career and advances in HSCT over time. He also tells stories of his patients with successful recoveries.
The the book on Amazon: www.amazon.com/Everyday-Mirac...
His Website, A Stem Cell Journey: astemcelljourney.com/about/dr...
Selected Sources:
Hematopoietic stem cell transplantation for progressive multiple sclerosis: failure of a total body irradiation-based conditioning regimen to prevent disease progression in patients with high disability scores: pubmed.ncbi.nlm.nih.gov/12842...
11) Autologous non-myeloablative haemopoietic stem cell transplantation in relapsing-remitting multiple sclerosis: a phase I/II study: pubmed.ncbi.nlm.nih.gov/19186...
Effect of Nonmyeloablative Hematopoietic Stem Cell Transplantation vs Continued Disease-Modifying Therapy on Disease Progression in Patients With Relapsing-Remitting Multiple Sclerosis: jamanetwork.com/journals/jama...
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Dr. Brandon Beaber is a board-certified neurologist with subspecialty training in multiple sclerosis and other immunological diseases of the nervous system. He is a partner in the Southern California Permanente Medical Group and practices in Downey, California (South Los Angeles). He has several publications on MS epidemiology and has participated in clinical trials for MS therapeutics. You can follow him on twitter @Brandon_Beaber where he regularly posts about MS news and research.
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he video material by Dr. Brandon Beaber is general educational material on health conditions and is not intended to be used by viewers to diagnose or treat any individual's medical condition. Specifically, this material is not a substitute for individualized diagnostic and treatment advice by a qualified medical/health practitioner, licensed in your jurisdiction, who has access to the relevant information available from diagnostic testing, medical interviews, and a physical examination. To the extent that Dr. Beaber endorses any lifestyle change, behavioral intervention, or supplements, the viewer should consult with a qualified healthcare professional to determine the safety and efficacy of the intervention in light of their individualized information. 
Наука
In 2015 I was Dx with MS , at the time I had mild disability, I contacted the clinic in Chicago to acquire about the treatment. They told me I wasn’t a candidate regardless that I wanted to pay out of pocket.. reasons newly diagnosed and in childbearing age. Now in 2023 i can hardly walk with an aid , no kids … and the damage is done.. if they have approved me in 2015 I could have not lost my ability to move properly. Honestly i am upset . Now 8 years later it will be such a struggle. Now I no longer have the confidence of those doctors and extreme medical procedure.
My son was diagnosed with CIDP in 2006 at age 20. He failed all standard treatments. We learned about Dr Burt and his clinical trial and in Aug 2007, he underwent the Stem cell transplant. He got his life back! He went from barely able to walk, feed, and dress himself to living and working independently. Did he recover overnight - No it was a slow process of his nerves healing. Is he 100 percent - no he has a permanent neuropathy in his feet. But he has no pain and he is happy with his life. We are forever grateful to Dr Burt and his team.
Thank you Dr. Burt! You saved and gave my life back to me. My MS has been in remission since june 2017. I plan on using my anticipated RN graduation (May '23) to join a research team: Autoimmunology, neuro, or genomics is what I hope to find a job in. I owe him and science an extreme debt and I plan on repaying it.
WOW! What a good good man is Dr Richard Burt - and this interview, covers every question that could be asked - thank you Dr Beaber and Dr Burt, for the obvious honesty and thorough exploration of the whole question of HSCT for MS - two men who care, thank you
Dr. Burt saved my life. Diagnosed with Progressive Systemic Scleroderma 2010. Stem Cell Transplant 2011 stopped the progression of the disease. 02/22/24 will be my 13th year. Thank you Dr. Burt.
Great interview. Interesting how passionate Dr. Burt was about how bad those DMT’s are. He’s not a neurologist so he has nothing to lose.
Dr. Burt!! So great to see you!!!! Thank you for everything you've done for us!!!!
🙌Dr Burt presents the information in such a clear and thorough way Highly impressed with his vision, approach, and follow through I’ve learned a tremendous amount of new information and broadened my spectrum of options and pathways Thanks for sharing!
Except...Dr. Burt says people not having lesions and relapse do not need hsct...which is 100% wrong. He does
not really understand that 80% of rrms
will become spms.
This is awesome that a neurologist like you gets a lot of interest about HSCT. Usually, here in France, the neurologists do not even know about this protocol !
I am going to Russia in June to do it
Good luck to you.
How did it go? 🤔
Thank you this is the best one yet. Dr Burt you are so amazing a true Medical trailblazer !
Great interview!! Thanks to both Doctor Burt and Doctor Beaber for getting this out to the world!!
Glad you liked it Tesla
I am glad I watched this video. I now have much respect for this doctor now.
It’s finally here!!!!!!! ❤❤❤❤ thank you so so so much Dr Beaber.
Wonderful interview & straight from the man himself.
#Sharingiscaring
How do we get multiple sclerosis reclassified as a blood problem, so patients have access to hematologist that are familiar with HSCT?
Nerve damage just is the end result.
Dr. Richard Burt is a hematologist and pioneer of hematopoietic stem cell transplant (HSCT) for autoimmune diseases including multiple sclerosis (MS), scleroderma (systemic sclerosis), lupus, Crohn's disease, and chronic inflammatory demyelinating polyneuropathy. He performed America’s first HSCT for MS in the United States and published the world’s first randomized clinical stem cell transplantation trials for systemic sclerosis and multiple sclerosis. Dr. Burt has spent a career developing HSCT from an idea in his mind. He has published a medical textbook on this field and has given educational talks to help other centers through America develop this therapy. He is also working on another scientific stem cell discovery that he wants to bring to clinical trials to help patients.
Wow a lot of knowledge here!!! Long but very interesting. I look forward to more on this subject. Definitely a risk vs reward treatment and is not for everyone with MS. Being more in the PPMS group I’m always looking into stopping my progression. The only treatment I’ve had is Lemtrada and cant say I see improvements but hopefully it’s stopping some of the possible problems from getting worse. I’m into year two completing my second treatment and I’m hoping to see improvement I have yet to see. Whats my next step possible if this doesn’t have the wanted outcome? Any thoughts of IVIG for me or any others after Lemtrada? Again thank you both for your commitment to a cure for this disease 💜 im always listening.
Outstanding ❤
Apropos the long-term follow-up study idea near 36:00 to 44: :
1: I wonder if diet has anything to do with remission after transplant.
2: Another reason to do a long-term follow-up: Studies can be done fully remotely now, including blood testing, even if EDSS can't officially be measured over zoom. I'm participating in one out of Michael Levy's Mass General lab and I'm on the West Coast.
Dr Burt is a hero!
There actually is a randomized (and blind) study being done at Haukeland in Bergen, Norway, looking into the effectiveness between Rituximab and Ocrelizumab. It's called OVERLORD-MS.
Daughter was a patient of Dr Burt.❤
Almost 8 years post HSCT with Dr Burt!
Congrats
Where is he practicing now?
are you still in remission?
Dr. Burt
Amazing lecture. Is HSCT beneficial for secondary progressive Ms. thank you so much
According to Dr. Burt, it could be beneficial in some people with active SPMS with gad+ lesions. I am not aware of any impressive published randomized trials or observational data in progressive MS though.
Dr. Burt did do some early spms..but he
treated them off trial..on compassionate
basis.
I haven’t had really any advancements in my disability, so I don’t know it’s worth.
How old are you ?.people become spms from
40-50 and by then it is too late to benefit from hsct.
@@orbitingdecay6797 Only heard of one 60 y/o
man who went from edss 6 to 3...most do not improve or stop progression for more than three years. People think they will have low edss for 40/ 50years.. DMT..Not likely.
Thank you, Doctor Burt, 17 years free!! You saved me!!
Thank you, this is one of the most interesting videos. I wonder if the reason the patients relapsed from the high dose of cyclophosphamide for aggressive MS was because it depleted the T cells?
An interesting question indeed.
In which minutes of the video he talked about that?
Great interview! :) I was wondering - are treatments like PLEX (plasma exchange / plasmapherisis) used in MS or is in cases with NMO? I had a very poor recovery post MS relapse last year that left me blind in one eye and the steroids didn't completely help (3 days infusion). Is PLEX or continuation with steroid tablets normal? :P My MS neurologist said it wasn't useful in MS.
Do you by chance have aggressive ms?
I wad diagnosed July 2020
In August 2020 I had relapse . The neuro gave me 3 days solumedrol in iv. I didn't feel better. Switched to ms specialist. He thought I probably needed 5 because that's what he recommends.
So... I got 3 more days of solumedrol. Not only did I not feel better but I then became (temporary thank God) blind for 5 months + 2 more for my 20/20 to be returned.
I'm asking because my ms neuro says steroids do not work on aggressive ms. And the blindness is a side effect from solumedrol (it flared my optic neuritis)
I had then received 5 days IVIG. It was either IV or plasmapheresis. I chose the former.
My nurse who does my monthly infusions says she has 1 patient who only does monthly IVIG infusions. Only thing that helps her
I have a video on PLEX which could be helpful: ruclips.net/video/yWd0Is_VKtY/видео.html It does have evidence in people with a severe MS relapse which does not respond to steroids.
@@DrBrandonBeaber amazing thank you Dr. Brandon! Your channel is truly incredible, I thank you so much for your work uploading all of these videos :)
@@donnabolt5847 I am not sure, I was diagnosed about half a year ago with first relapse almost a year ago now. My scans show some lesions but I am not sure if it is aggressive yet, I think I need more time to see how often I relapse. But my first relapse really knocked me out - within 2 days my left eye vision went completely black, not even light perception, I could only vaguely see shapes on the very outside of my vision with my left eye. Had 3 days of iv steroids but no follow up from doctors to see if the treatment worked... Since this was all new to me and it came out of the blue I assumed they knew what they were doing. Now many months later when the damage is done and it is permanent I discover that PLEX / IVIG can be used in steroid refractive / non responsive cases. Just makes me sick that because my neuro didn't follow up or check in 1-2 weeks later I am blind in one eye for life (I believe there about a 1 month window where it helps from what I have seen). From studies I have seen in severe Optic neuritis PLEX gives a 50-50 chance for recovery. Something I would have loved to taken a chance on. I am really hoping it is not aggressive - currently on vumerity / tecfidera and hoping that may work.
I'm currently awaiting diagnosis. I can't get a neurology appointment until September. I've been heavily weighing a HSCT. But I'm a bit confused here by what Dr. Burt suggested. So it's too big of a risk to do when your EDSS is low? But isn't it risky to wait too? Just trying to figure out when it's best to do. It seems most neurologist are against HSCT.
Yes..problem is Dr. Burt is not up to date on latest ms research...he think ms is controlled if
there are no relapses...Totally Wrong...people have no relapses but still become spms and then hsct does not work. ..it is too late.
Dr. Burt should know better by now and Dr.
Beaber avoided the issue...and did not bring
it up.. lost opportunity to clarify a life/death
issue...:(..
Does HSCT works for NMOSD( Seronegative)??
In this case series, A single patient was AQP4-IgG-seronegative pretransplantation and "never relapsed" after the treatment (see table 3) www.ncbi.nlm.nih.gov/pmc/articles/PMC6946475/
@@DrBrandonBeaber Sir, Last February 2022, I got LETM from C6 to L1 level. And tested negative for both anti-NMO and anti-MOG. I had a relapse in october, 2022. What is the best treatment option for me? Currently I am on Rituximab.
What is your age?
@Dr. Brandon Beaber
Sir, Last February 2022, I got LETM from C6 to L1 level. And tested negative for both anti-NMO and anti-MOG. I had a relapse in october, 2022. What is the best treatment option for me? Currently I am on Rituximab. Sir please help me out
HSCT saved my wifes life. BIG PHARMA shut him down plain and simple. The US and Canada does not want to provide this procedure because its a game changer. All about the money. Go to Monterrey Mexico. God bless MS'ERS! 3:46
* worthy
Where it could be done for secondary progressive ms
see "India hsct"
also Mexico and Russia
Please don’t go to India!!!
Best clinics for it outside of USA are in Moscow and Mexico . Both places are about 50€ K .
No...they are $55,000 and India is just as safe these days as those clinics. A worldwide survey of hsct found 5% had
in fact gone to India.
ASK THE BIG QUESTION WHY IS IT NOT PERFORMED IN THE US! WE ALL KNOW!
What if autoimmune disorders aren't really autoimmune disorders! Maybe there is something " antigens" or whatever that manipulate the immune system or that spread in multiple parts of the body " based on type of disease " and when immune system try to fight that foreign particles there happens the collateral damage. there are some points I thought of when trying to put that argument. 1. In 99% one is not born with the disease so the immune system was working properly then usually after the age of 20 it starts behaving strangely. 2. All autoimmune disease tend to flare up that when the damage happens it goes into remission before it hits back. My point here is that if the immune system is not functioning properly why it hits and then stops for a certain period of time before it hits again. 3. No matter how they try to suppress the immune system still there is flares! Damages continue 4. Why autoimmunity has a wide range of manifestation, some attacks the brain and CNS, some attacks the thyroid gland, some attacks the skin, some attacks blood vessels some attacks the liver etc." more than 80 autoimmune diseases ". Decades have past and no matter how they find new ways to suppress the immune system even with high chemotherapy doses like in HSCT the disease tends to relapse! I've always wondered when they are going to declare that suppression of immunity is waste of time and health of the patients and instead of that they put real effort to find the real cause and fix it? What do you think?
I address your question in this video: ruclips.net/video/vT2FJUEJcA4/видео.html
@@DrBrandonBeaber thank you Dr. Brandon. One thing to clarify here is that I'm not a conspiracy theory fan tho. I hope there will be cure for all those horrible autoimmune diseases but sadly I don't think we'll live to see that.
DMT's would so often, get a butt kickingin a head to head with HSCT..
the elephant in every neurologists room. I
n Toronto neuro's Ocre is pushed for PPMS while Ritux is never mentioned . I hear they are planning a head to head trial with Ocrevus vs high dosage Bailey's Irish Cream.
I am going to do a video comparing HSCT vs. Ocrevus, tysabri, and gilenya very soon.
@@DrBrandonBeaber have serious brains heart and integrity. What about Lemtrada also in those?
I noticed that in fb groups the Lemtrada group had a more open attitude towards comparing notes with out the sense of brand loyalty and confirmation bias. for instance, when i asked whether there were any who had tried hsct then lemtrada or vice versa I got honest replies. when asked quite similar questions on fb groups for another DMT the replies were oddly unwelcoming towards comparing notes..
In any case i certainly feel for any who have MS and appreciate all those who look for the best approaches and innovation moving forward and understand (with compassion) how humans might invest loyalty to brands or approaches, or likewise become disgruntled when an approach is not giving them the respite they'd hoped for.
Since I've lived post diagnosis PPMS , a unplanned gift/ability I've acquired is a confidence in approaching others with an outward joy to be alive ( i dare say it is infectious) and a will to get others , condition aside, to live with maximum appreciation, joy and gratefullness.