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Multiple Sclerosis Podcast, hosted by Brooke Slick and Jodi Feltham: For Living a Life by Design not Diagnosis
Episodes
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.
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 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:
BROOKE SLICK:
JODI FELTHAM:
Wednesday Mar 22, 2023
Wednesday Mar 22, 2023
Today, we'll chat with one of our Original Gymmers, Jan J, and learn about her:
- Misdiagnosis and surgical treatment
- Primary symptoms and their impact on her life
- Change in occupation
- Adventures living in foreign lands
- Love for travel and how that looks after diagnosis
- Introduction to the The MS Gym
- Love for the Members Only Corner Facebook group
- Strategies to keep calm and maintain a positive outlook
- Ability to find joy in daily chores
- Future travel plans and bucket list destinations
- Goals for finding continued freedom
- Advice to keep moving your body
The MS Gym Links:
Wednesday Mar 01, 2023
Wednesday Mar 01, 2023
Join me today to uncover what purposes and desires reside in your heart that you want to share with the world.
Are you passionate about a specific hobby, diet, activity or cause?
Today, I'll talk about my own desire to become an advocate for disability and also my favorite clothing line lululemon.
It's my desire that disability be part of the "diversity" movement in word and in action.
Links
Join me on my advocacy journey:
Thursday Feb 16, 2023
Thursday Feb 16, 2023
Welcome to part two of two of our interview with Dr. Richard Burt. I can't tell you how many people have reached out to me after listening to part one and how anxious they are to see what awaits in part two. I even had one listener message me to say the interview with Dr, Burt should be required watching for everyone with MS, and I'm not going to disagree with that deduction.
If you have PPMS, whether you're considering HSCT or not, you should definitely listen to this episode. Dr. Burt completely reframes the type of disease PPMS is or isn't. If you want to hear about the future of organ and tissue repair including but not exclusive to remyelination, you should listen to this episode. Those topics are just scratching the surface of what this medical innovator brings to the table for the future of the treatment of chronic illnesses, debilitating injuries, and to the exciting new world of neuroregeneration. I feel certain that what he's working on today is laying the groundwork for treatments that will be considered commonplace over the next 30 years.
Before we jump into this next episode, I wanted to let you know that this episode will be available to view on the MS Gym’s YouTube page, and there will be links in the episode notes to that YouTube page. There will also be links to part one of this interview as well as links to Dr. Burt’s book, and his website, as well as an email, where you can contact Dr. Burt’s team if you're considering HSCT.
EPISODE NOTES:
- His thoughts on PPMS and why he doesn't treat it
- How disease labels can evolve over time
- How HSCT drug protocols vary per autoimmune disease
- What can trigger a relapse post HSCT
- IPS stem cells and neuroregeneration
- Starting a new biotech company
- The future of HSCT in Chicago
- How IPS could help patients with SPMS and PPMS
- Where patients can receive non-myeloablative HSCT in the US now
- Neurodegenerative treatment for non-active SPMS and PPMS
- Pseudo flares post HSCT and what can cause them…don't panic!
- Tweaking the healthcare system to make the patient first
- Medicine is a profession, healthcare is a business
LINKS:
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:
BROOKE SLICK:
Thursday Feb 09, 2023
Thursday Feb 09, 2023
I'm super excited about these next two episodes!
Of course, any episode that has to do with HSCT (hematopoietic stem cell transplant) is super important to me. For the last 10 years, I've been a vocal advocate for HSCT. Screaming about it from the top of my lungs through social media, blogging, and to anyone who would listen or inquired. As you may or may not know, my co-host, Jodi, and I have both received HSCT for our MS. I had mine in Russia 10 years ago, and Jodi in Mexico in 2018. So when Dr. Richard Burt's team reached out to us to discuss all things HSCT, as well as his recently released book, Everyday Miracles, that puts forth, in lay terms, his long road to accomplishing his goals, we were beyond open to having the opportunity to ask all the questions we ever wanted to know. Those questions include the reasoning behind his choices for inclusion and exclusion of certain patients for this treatment...in particular, MS patients. Questions like…Which MS patients does this treatment work for? Who doesn't it work for? and why?
So who is Dr Richard Burt? He's the determined and innovative physician who pioneered the use of HSCT in the US. Within the HSCT community, he's considered the Godfather of HSCT, and yes, in case you're wondering, he IS the Dr. who treated actress Selma Blair.
For the last 35 years, with laser focus and blinders on to block out any peripheral static from naysayers, Dr. Burt has been quietly and methodically raging against the machine that is today's medical system.
Armed with the knowledge he gained while treating patients with leukemia with HSCT, he felt certain it could potentially halt the progression of certain autoimmune diseases and in many cases, reverse symptoms. So he plowed forward with a mission to prove his hypothesis. But it wouldn't happen overnight. There were randomized trials, hundreds of patients, many diseases and, in the end, life-changing success stories.
Dr. Burt was the first doctor in the US to give hope to patients with MS, Lupus, Crohn's, Stiff Person Syndrome and CIDP, when in the past they'd grappled with a life filled with a long list of ineffective drugs and certain disease progression.
To be clear, just because he was butting up against systemic red tape here in the US, doesn't mean he wasn't becoming a highly decorated peer by the international medical community and beyond. His list of awards granted by esteemed medical organizations is lengthy and impressive. I mean seriously, how many doctors do you know who've been presented with the "keys to the Vatican" in Vatican City, Rome? He was even recognized by Science illustrated for accomplishing one of the top 10 medical breakthroughs for the next 10 years. And, the forward for his book was written by the Dalai Lama!
Yes! Dr. Burt has got the juice! So much so that we had to squeeze it out in two full episodes. Both of which are packed with answers from pointed questions that you won't find anywhere else. Asked by HSCT veterans who, for over a decade, have been privy to all the insider speculation regarding Dr. Burt's methodology. Like why he will or won't treat certain MS patients, why he uses certain drugs in his protocol, and what he considers a successful HSCT.
It's time to dig in and peel back the curtain on HSCT with Dr. Richard Burt.
EPISODE NOTES:
- Dr. Burt's book, Everyday Miracles
- Making HSCT easy to understand
- 54 patient stories
- Being a patient-oriented physician
- Insurance coverage
- How HSCT works
- The mistake of thinking that the stem cells are what resets your immune system
- Whose stem cells are used?
- Myeloablative or non-myeloablative HSCT…which one does Dr. Burt prefer for AI disease
- HSCT for cancer vs. an autoimmune disease
- Stronger protocols don't always mean better
- A one-time treatment
- How long will it last?
- The important role of measuring brain atrophy in MS progression
- The colonialistic attitude of doctors toward patients
- The risks associated with a myeloablative protocol
- What is the definition of a successful HSCT
- The difference between active and non-active SPMS
- Neurodegeneration…it's tricky
- Ocrevus, neurodegeneration and progression to SPMS
- Your immune system is your ally
- MS drugs are toxins
- Why he used ATG as part of his HSCT protocol
LINKS:
This episode on YouTube: https://youtu.be/ezjhqHtYA8Y
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:
BROOKE SLICK:
Wednesday Jan 25, 2023
Wednesday Jan 25, 2023
Let's travel the globe to chat with one of our international gym Member, Birgit.
We'll unpack her:
- Difficult diagnosis
- Relief with finding answers
- Active lifestyle
- Career and accommodations
- Difficulty educating colleagues about MS
- Lifestyle choices with food and exercise
- Discovery of The MS Gym
- Choice to pursue medications
- Acceptance and convictions of her disease and choices
- Transparency with close friends and family about her diagnosis
- Honest and open relationship with her neurologist
- Tools to stay calm and focused on her difficult days
- Advice to the newly diagnosed
- Future travel plans and whale watching adventures
- Passion to mentor the newly diagnosed in her community
- Her love for the Members Only Corner
The MS Gym Links
Thursday Jan 12, 2023
Thursday Jan 12, 2023
Today we're going to be talking about integrative and functional medicine and how you can use them in tandem for your best and healthiest outcome while living with MS.
No matter where you are in the trajectory of your disease. Whether you've just been diagnosed or you've had it for 30 years, you may have asked yourself, "What can I be doing for myself above and beyond the drugs I'm taking, or the infusions I'm getting? There has to be something else."
That's where our next guest, Dr. Susan Payrovi, comes into play. Dr. Payrovi is the co-founder of True Medicine which you'll hear more about in this episode. She's board certified in integrative and functional medicine and has dedicated her practice to a whole-person approach to treatment that goes beyond simply throwing drugs at a patient to see what sticks.
Over and above her degrees that hang on her wall, Dr. Payrovi is even more uniquely qualified to provide advice to her patients because she herself lives with MS.
Please join Jodi and I in welcoming Dr. Susan Payrovi as she educates us on the power of lifestyle habits that can lead to lifelong wellness.
EPISODE NOTES
- What is integrative and functional medicine?
- The power of lifestyle habits
- Looking at the human body through a different lens
- Looking at the underlying cause of symptoms
- Looking beyond the physical body
- The profound effect of childhood experiences
- Convincing a patient to consider integrative and functional medicine
- The advantages of working in groups
- Starting with one small change
- What integrative and functional medicine isn't
- What one lifestyle habit would have the biggest effect
- How to make gains in sleep
- The role exercise plays in good sleep
- Cortisol, Melatonin and how they affect sleep
- The lesser known benefits of exercise/movement
- The gut microbiome
- How much exercise to create change
- Rats and remyelination
- The best time of day to exercise
- How much exercise is enough
- Keeping positive mindset in your MS toolbox
- Looking for the gifts of your MS
- Stress management
- Mindset and longevity
- Underestimating the power of our thoughts
- The influence of who you surround yourself with
- Integrative and functional medicine and insurance
- Dr. Payrovi's True Medicine practice
- A structured way to think through your goals
- 12-day detox challenge
- Gut restoration program
LINKS
THE MS GYM:
BROOKE SLICK:
Wednesday Nov 16, 2022
Wednesday Nov 16, 2022
Welcome to part two of our podcast about the gut and microbiome with coach William Dickinson.
In today's episode, we'll learn more about:
- The five pillars of good gut health (stomach acid, digestive enzymes, bile, motility and the gut mucosa)
- How the microbiome interacts with these five pillars
- The importance of having a diverse microbiome to combat disease
- Whether or not deficiencies in the five pillars are causing your unnecessary symptoms and discomfort
- What the “root cause” is and how it plays into your disease and treatment process
- My personal experiences working firsthand with William and the successes I’ve seen in my food intake and digestive function.
- Additional resources to learn more about gut health and auto immunity
Links:
Wednesday Nov 02, 2022
Wednesday Nov 02, 2022
We’ve all heard so much information about the importance of good gut health. But what does that really mean?
Today’s guest, coach William Dickinson, will help us unravel some of the mystery around autoimmune disease and the gut.
In part one of this podcast, we will learn about William and his own health journey through chronic fatigue syndrome.
He’ll share his:
- Root causes
- Debilitating fatigue that left him bed ridden for one-and-a-half years
- Restricted diet
- Deep-dive research into the gut and microbiome
- Own healing journey
- Discovery of the connection between autoimmune disease and the infamous, leaky gut (intestinal hyperpermeability)
- Formulation of the Five Pillars to heal your gut course
Links:
Wednesday Oct 19, 2022
Wednesday Oct 19, 2022
Welcome back to the second episode of our interview with actress Jamie-Lynn Sigler.
In this episode, we pick up where we left off when I asked Jamie if she'd experienced a postpartum relapse of her MS. We also discuss Jamie's MS mom guilt, and how she makes vacationing with young children and MS easier. Also in this episode, she shares her experience with Coach Trevor and the hope that his advice has given her. We finish out this intriguing interview by touching on Jamie's diet choices as well as what and how she uses cannabis for spasticity.
EPISODE NOTES:
-Raising young children with MS
-Remission of symptoms during pregnancy
-Postpartum depression
-What she can and can't do with her children
-The guilt of having others do things with her kids
-"Other moms can run"
-Focusing on what she CAN do
-Would I have been a better mom without MS
-When your spouse and children become your cheerleader
-Raising children with a conscious
-Julie Stamm's book, Some Days
-Bringing value despite MS
-The value of therapy
-Finding solace in friendships
-Vacationing with young children and MS
-Not slowing anybody down
-Choosing smaller hotels
-Making vacation easier with accessibility
-Jamie's experience with Trevor and the MS Gym
-Feeling so much hope
-The handbook for living
-Blown away by Trevor's compassion
-Infectious and genuine
-Diet
-She's tried ALL the diets
-Being kind to herself
-Nothing strict
-Everything in moderation
-Whatever makes her feel normal and not restrictive
-Sugar is the enemy
-Restricting water intake
-Avoiding stimulants
-Cannabis for spasticity
LINKS
THE MS GYM:
BROOKE SLICK: