Dr. David Kaufman is renowned for working with the most complex patients and for his podcast on Patreon, Unraveled:  Understanding Medical Complexity. He and Dr. Dempsey discuss the role of MCAS in ME/CFS and other complex disorders and how he starts unraveling these complex clusters of conditions.  You can learn more about Dr. Kaufman and his practice here.

You can learn more about Dr. Dempsey and her practice here.

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Dr. Dempsey interviews pediatric cardiologist Dr. Jeffrey Boris about the Triad (MCAS, POTS and hypermobility syndromes) in his pediatric population.  As an avid researcher and data analyst, Dr. Boris is always a wealth of knowledge on latest findings and yet-unpublished trends and hypotheses.  The doctors also exchange interesting observations about MCAS and cholesterol, PCOS, and much more.

You can learn more about Dr. Boris and his practice here.

You can learn more about Dr. Dempsey and her practice here.

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

We have the entire medical/production team of 5 physician/researchers to give us an update and behind-the-scenes look at the documentary they are making about the trifecta of MCAS, dysautonomia/POTS, and hypermobility spectrum disorders.  We hear from doctors Tania Dempsey, Larry Afrin, Linda Bluestein, Lawrence Kinsella and Leonard Weinstock, along with patient Jill Brook, to hear how filming is going so far and how we can all help support the film.  This is a crossover episode with Bendy Bodies with Hypermobility MD, Dr. Linda Bluestein and The POTScast:  POTS Matters.  You can learn more about the documentary at MCASfund.org.

Chapters

00:00 Introduction

00:37 Creating Awareness and Increasing Treatment Options

03:09 The Birth of the Documentary Project

05:20 Filming in New York

07:19 Filming in St. Louis

10:32 The Motivation to Work with Complex Patients

15:49 The Journey of Recognizing MCAS

17:34 The Impact of MCAS Treatment

21:00 Personal Experiences and Incorporating MCAS Treatment

22:42 The Need for an Educational Library

25:29 The Challenge of Condensing Information

26:21 Describing MCAS in Sound Bites

31:10 The Importance of Raising Awareness

34:42 Growth and Development Abnormalities in MCAS

40:03 Main Points about Hypermobility Syndromes and Dysautonomia

44:48 Partnership with LDN Research Trust

51:47 Final Words and Call for Support

54:26 Recognition and Treatment of Unrecognized Patients

55:44 Importance of Learning and Trying

56:13 Gratitude for Dedicated Doctors

56:47 Closing Remarks and Resources

You can learn more about the physicians in this episode at:

https://www.drtaniadempsey.com/ for Dr. Tania Dempsey

https://aimcenterpm.com/ for Dr. Tania Dempsey and Dr. Lawrence Afrin

https://www.gidoctor.net/leonard-weinstock-md for Dr. Leonard Weinstock

https://www.ssmhealth.com/find-a-doctor/doctor-details/laurence-j-kinsella-md for Dr. Laurence Kinsella

https://www.hypermobilitymd.com/ for Dr. Linda Bluestein

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Dr. Dempsey interviews Dr. Eva Nagy, a world-renowned breast surgeon experienced in all sorts of breast surgeries, who has developed special interest and skill in treating breast implant illness (BII), which she believes can be related to mast cell activation syndrome (MCAS).  Dr. Nagy describes BII, how she removes problem implants, and the effects this can have on a wide range of symptoms.

You can learn more about Dr. Nagy and her practice here.

You can learn more about Dr. Dempsey and her practice here.

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Dr. Settle is a psychiatrist who believes that mast cell activation is responsible for some symptoms of anxiety, depression, bipolar disorder type II and others. She treats MCAS as a way to stabilize both mast cells and their emotional state.

You can learn more about Dr. Settle and her practice here.

You can learn more about Dr. Dempsey and her practice here.

You can read the transcript for this episode here: https://tinyurl.com/potscast178

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

MCAS expert Dr. Bluestein is an anesthesiologist and pain specialist focusing on hypermobility and its associated pain syndromes. Having EDS and her own pain, she discusses the use of opioids, ketamine, pain programs in this population, and much more!

You can learn more about Dr. Bluestein and her practice and podcast here.

You can learn more about Dr. Dempsey and her practice here.

You can read the transcript for this episode here: https://tinyurl.com/potscast172

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Dr. Weinstock and Dr. Dempsey are spearheading the creation of a documentary about MCAS, POTS, and EDS. Still in the planning stages, this documentary intends to educate medical professionals and the general public. We hope that it will help raise awareness!

Link to the LDN Research Trust:https://ldnresearchtrust.org/mast-cell-activation-syndrome-documentary

You can read the transcript for this episode here: https://tinyurl.com/potscast165

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Treating MCAS, POTS, and Long COVID can be difficult, and physicians must attack from various angles to get patients feeling better. Dr. Maxwell walks us through his thinking and how MCAS is linked to POTS and Long COVID. This episode is a must-listen for patients and practitioners alike.

You can read the transcript for this episode here: http://tinyurl.com/potscast159

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs  https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Dr. Weinstock, a gastroenterologist and leading expert on MCAS, discusses mast cells in the context of the GI tract. Bloating, gas, SIBO, SIFO, and IBS are all discussed in this episode. In addition, he shares how he prescribes LDN for his patients. There is a ton of great information in this episode for patients and practitioners alike!

You can read the transcript for this episode here: https://tinyurl.com/potscast135

Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!

If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Dr. Afrin, a world expert in all things mast cell, talks in depth about issues with the first MCAS "consensus" statement and the need for a second MCAS consensus statement so that patients can be treated even if their lab tests don't show an elevation of tryptase levels. This opens the diagnostic door to many additional patients so that they can get the treatment that they need.

You can read the transcript for this episode here: https://tinyurl.com/potscast129

Please click the "subscribe" button so that you don't miss an episode of The POTScast. Subscribing also helps us reach other people just like you!

If you liked this episode, we hope you will help to support our production costs by donating to Standing Up to POTS at https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at [email protected]!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.