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 info@standinguptopots.org!

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.



[00:00:00] Jill Brook: Hello fellow POTS patients and beautiful people who care about POTS patients. I’m Jill Brook, your hyperadrenergic host and today I am honored to speak with two physicians I admire so much as they tell us about an exciting new project that they’re working on to help our community. If you’re a regular listener, you already know Dr. Tania Dempsey from our Mast Cell Matters episodes. After training at Johns Hopkins and Cornell, she’s now a world renowned leading expert on MCAS, POTS, immune dysregulation, Lyme disease, all the most gnarly, complex, challenging conditions. And you should also know, Dr. Leonard Weinstock, gastroenterologist extraordinaire, research machine, and a world leader in MCAS, IBS, SIBO, and the world of syndromes, which most physicians shy away from, but not Dr. Weinstock. Among other claims to fame, he was among the first to identify that low dose naltrexone is a huge help to some of us in this community. And first to publish on how long COVID may be related to mast cell activation syndrome. Doctors Dempsey and Weinstock, you do so much for this community. And now you are announcing a new project for us. So thank you for being here. And what are you up to?

[00:01:16] Dr. Leonard Weinstock: Work, lots of work, because once you’re known in the community, people like to come to you because of the difficulties they find elsewhere. And that’s something that Tania Dempsey and I have struggled with for quite some time. And we were putting our heads together thinking about. How do you get other people to learn about it? Not only patients and families, but doctors. And how do you get them interested?

[00:01:46] Jill Brook: How do you get them interested?

[00:01:48] Dr. Tania Dempsey: Should I speak a little bit? Okay. We are committed to helping this community, to helping patients who don’t have answers, need answers, need people to take them seriously. We’re passionate about helping patients specifically with mast cell activation syndrome and all the syndromes that come with it. And so we are really excited about this opportunity to film a documentary on MCAS. This will be the first documentary of its kind, specifically on MCAS. And we’re looking at covering diagnosis, obviously treatment, looking at LDN specifically amongst other things. And and really, this will be an opportunity to educate both the community at large, the public and the medical providers, and we will be providing presentations and information so that anyone watching this could actually take this information and use it to help others.

[00:02:49] Dr. Leonard Weinstock: I can’t agree more. I will tell you that you can’t talk about MCAS and forget about POTS and EDS. And the evil triad, as I like to say, and we also like to say, will be dealt with in this documentary. And it’s essential that we train the new doctors before they’re jaded by certain groups of people, doctors and namely, I can’t say the names of doctors, but there are groups out there that make it impossible to diagnose MCAS. They don’t teach how to diagnose the simple hypermobility changes in people’s joints. They barely teach POTS to cardiologists, but nobody else knows about POTS, except for some neurologists. And they’re a rare breed, the autonomic specialists. So we’re excited and as Dr. Dempsey said, our plans not only is to produce a high quality documentary, but tag along with QV codes and hard links on the internet, educational PowerPoints that will be recorded by the top people in the MCAS, POTS, and EDS world.

[00:04:08] Jill Brook: That is so exciting. So what I’m hearing is that you and some of your cohorts of other top experts and we’ve had episodes about the consensus to MCAS diagnostic criteria and why that is important and why it serves patients better. And so what I’m hearing is you are making a push to help spread the word and get more physicians able to recognize and treat these patients because there’s so many of us. And the few of you who do it are, I think, overwhelmed right now. Yeah.

[00:04:41] Dr. Tania Dempsey: the reality is that at least 17% of the population has MCAS to some degree, and it’s a spectrum and maybe that number is really larger. Maybe it’s 20%. And and so that’s a lot of people out there who, who need help. And sometimes the help is, you know, it’s a milder, syndrome, a milder manifestation. Sometimes it’s more severe. We need more medical providers who can recognize these things. And again, to treat 20% of the population, we need a lot of medical providers who are going to be on board, who are going to be able to understand MCAS and then the triad as a whole. And then what I talk about is the septad which is like the four other associated conditions, and now the DECAD so seven other conditions associated with the triad. There’s just a lot of information and a lot of people who need help. And, and so we want to put that together and provide a way for the whole world really to understand this better.

[00:05:44] Jill Brook: Well, I agree about the whole world, because I get it that from your perspective, you’re excited to share this with other practitioners and to maybe have it shown to medical students as a way to be introduced to this. But I’m actually selfishly excited to show it to family members, to friends, to people who I would love to have understand this better, even though I’ve already found some physicians who are good at. So I’m, I’m excited for everybody to get more, more knowledge. Can you talk more? Oh

[00:06:15] Dr. Leonard Weinstock: I just want to dovetail into your statement about family and friends. Because it’s kind of like a family and friends discount, if you will, because 70% of patients have a positive family history compatible with MCAS and the genetic and the, what we call epigenetic phenomenon of All the toxic things in our world that change and mutate our genes is all part of living together in a toxic world, especially in a household and also sharing genetic risk factors. And so, so many times I hear from my patients, you know, I got to tell my sister about this because you told me that it could be inherited and she’s got all the crazy symptoms I do. Nobody’s ever listened to her. And I hear that over and over, over again. And Dr. Moulderings in a landmark study in 2013 proved it.

[00:07:13] Jill Brook: Right on. And then you had mentioned that there’ll be QR codes and links that people can follow for further information. Do you maybe want to just emphasize what that will be?

[00:07:25] Dr. Leonard Weinstock: Yeah, so in our complex medical study group, we’ll be reaching out to people who have given great lectures at our conferences and basically have them voice over and record over them. And then we’ll basically have a mini medical school course. And yet just like they have at Washington U where they have a mini medical and all the members of the audience are people wanting, you know, to learn more, but they’re just lay personnel. Anybody could actually get a lot of things out of it. So it really has different levels. And as long as nobody’s talking over anybody’s head, Everybody would actually benefit from listening to some of these PowerPoint talks.

[00:08:12] Jill Brook: Are you allowed to share the names of any other awesome experts, your colleagues who have agreed to be part of any of this?

[00:08:20] Dr. Leonard Weinstock: Tania, you want to give a sneak preview?

[00:08:23] Dr. Tania Dempsey: Well, obviously the two of us you, Jill, hopefully will be a part of the documentary. Dr. Lawrence Afrin. Of course, it wouldn’t be an MCAS documentary without the world’s expert in MCAS.

[00:08:38] Dr. Leonard Weinstock: Linda Blustein, the queen of hypermobility. So smart, fantastic speaker, but also a wonderful person who will talk about EDS. And we have a neurologist out of St. Louis who is one of those rare breeds of dysautonomia specialists. Who also I’m hoping we’ll discuss some of the complications of EDS neurologically and specifically, but also POTS.

[00:09:09] Jill Brook: Fantastic. So I know that you are partnering with the LDN Research Trust to have this film made, and I believe they’ve made six other documentaries. I’ve seen their cancer documentary, and I was actually blown away by how good it was. I learned some fascinating things, even though I’m lucky not to have any cancer in my life. But I made a mental note at the time to say, wow, if anybody I ever know gets cancer, I’m coming back to this documentary. But do you want to tell us a little bit about the LDN research trust and why you chose them?

[00:09:41] Dr. Leonard Weinstock: Right, well, it’s run by a fantastic person, Linda Elsgood, who about 20 years ago went to her neurologist and her GP in England and was in a wheelchair because of MS. And they both said to her, you’re going to die from this condition. And she being an attorney and smart and inventive. Looked around and found out about LDN, which has been used since 1984. Low dose naltrexone as an anti inflammatory, autoimmune blocker, and and other factors, anti pain, etc. And so Linda got on LDN. She relatively rapidly got out of the wheelchair. And she established LDN Research Trust to educate people about LDN around the world. And she has done so. She has created documentaries. She has created wonderful resources on the website and she has agreed to be a fundraiser for this documentary and and I was at this conference with her recently and bemoaned the fact that, we didn’t know where to go with this and as I look back, I presented so many patients at the conferences that had MCAS and presented with something unusual and got better with LDN and that concluded this time neuralgia and Tourette’s syndrome. Those were my two talks a couple weeks ago. And, you know, then I met her film producer, and we started talking, and she said, Let’s do it. Let’s get a documentary together. I’ll be the charity fundraiser, which is part of what she does as a dot org. It’s been exciting and things are mounting and now we’re just starting to promote because this is not for profit. This is literally to make life better for people.

[00:11:53] Jill Brook: Absolutely. And we’re so grateful because we know that you and all the physicians are donating your time to make this happen. And you’ve been working hard, actually for a few years, getting this in the works. And so, what is the cost to make a documentary like this? And so how much fundraising do we need to do?

[00:12:15] Dr. Leonard Weinstock: Well a lot. To put a high quality of film together and with a discount, it would be about 250, 000 to 300, 000. The fact is that Dr. Dempsey talked with her patient, who’s a filmmaker, or a friend of theirs, in New York City, where everything costs more, of course. And three years ago, we found out that it would take a million dollars. And we thought, there’s no way we could raise a million dollars. But, luckily, Rob Jones, who’s the producer of this show and others that are on the LDN Research Trust website does documentaries, and because it’s for a charity, He does it at a marked discount. So that’s what he’s willing to do. That’s what we hope for, to have a very good quality film. Documentaries usually run 50 to 60 minutes, and we’ll be having patients who have been affected by MCAS and POTS. Interview them, let them tell their story. And we’re going to be upbeat and we’re going to look for people who have gotten well because they found the right combination of medications and diet and environment. And Jill Brook extraordinary dietician and patient survivor is amazing. And she will hopefully be in a scene where she’ll be climbing up a mountain and then voicing over possibly how she got out of the pit that she was in. And I can tell you she was, and you can even read about it in the journal. Just Google MCAS and POTS and our case report. will be three or four down, right? Jill,

[00:14:11] Jill Brook: you got me out of a deep, deep pit.

[00:14:14] Dr. Tania Dempsey: Wow

[00:14:15] Jill Brook: well, I’m excited to support a documentary like this, partially because I feel like I’m part of a generation that did see how tough it is to not just have MCAS, but to have MCAS in a world where very few people recognize it. And to kind of give that gift to the next generation of having it be more widely known is exciting. And so I know that today we’re hoping that we can get people interested in learning more and maybe considering helping to fundraise, helping to support this. So we’re going to put a link in the show notes to the website that has more information about this documentary and the LDN Research Trust, and how people can help support it if they wish. Is there anything else we should tell people?

[00:15:05] Dr. Tania Dempsey: This is a way to provide credibility to a syndrome that, like I said, could be involving, you know, 20% of the population and it could potentially get worse with the toxic exposures and the things that that we’re dealing with and various traumas. And, I mean, the list goes on Lyme disease, COVID

[00:15:28] Dr. Leonard Weinstock: mold. mold.

[00:15:29] Dr. Tania Dempsey: mold. Absolutely. We’re going to cover that in the documentary. We just feel that this needs to get out there. This needs to be made more mainstream so that people recognize this as a real entity. We’ve never made a movie before. But, but we want to make this movie. We feel passionate about it and whoever can help us get there. And,

[00:15:51] Jill Brook: Absolutely. I feel like, you know, in times in history, there were generations that did something for the next generation. And I look forward to giving future generations so much less of a struggle just to get treatment for something that’s not even rare.

[00:16:07] Dr. Tania Dempsey: That’s a great point. Thank you for saying that.

[00:16:10] Jill Brook: So anything else we should mention?

[00:16:13] Dr. Tania Dempsey: No,

[00:16:14] Dr. Leonard Weinstock: We’re really excited about it. We know our patients will benefit from it. I just saw a woman, a nurse practitioner in training, last week and called her up tonight with her LTE four urine test that was abnormal and we had mentioned, you know, with the review of systems, so many things are positive and she said to me a week ago, you know, I just never wanted to be the complainer, and I haven’t been healthy, but I’m just, yeah, I didn’t want to be called crazy cause I have all these symptoms and I told her then I said, You have MCAS. I mean, you’re just screaming it. You’ve been sick since a childhood. And tonight when I told her, she said, you know, this is actually really relieving to me that I now have an explanation for what’s going on. I’ve had patients who get diagnosed and are in tears and I say, you know, you’re crying and I understand it. But now, shed those tears towards something positive because you now have a hope for the future with the right diagnosis comes treatment and hope.

[00:17:25] Dr. Tania Dempsey: yes,

[00:17:26] Jill Brook: And with more doctors who know about it, comes less waiting to get that treatment. No, so

[00:17:33] Dr. Tania Dempsey: exactly.

[00:17:34] Jill Brook: So thank you for everything you’re doing. Thank you for all the time and energy you’re putting into this. You guys are just amazing for all you do for this community. And it’s my hope that we can all step up and support this and make this happen. Thanks so much.

[00:17:49] Dr. Tania Dempsey: Thank you.

[00:17:50] Jill Brook: Okay listeners, that’s all for now. We’ll catch you again next week, but in the meantime, thank you for listening, remember you’re not alone, and please join us again soon.