Thursday Apr 06, 2023
Thursday Apr 06, 2023
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.
- 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
Episode #1 on YouTube: https://youtu.be/ezjhqHtYA8Y
This episode, #2 of 2, on YouTube: https://youtu.be/40dqLdIeZlc
Dr. Burt's book, EVERYDAY MIRACLES: https://www.amazon.com/Everyday-Miracles-Scleroderma-Autoimmune-Hematopoietic/dp/1637631251
Dr. Burt's website: https://astemcelljourney.com/about/drrichardburt/
Email to apply for HSCT with Dr. Burt: BURTRRMSTrial@scrippshealth.org
THE MS GYM:
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