Episode Transcript
[00:00:00]
Jill Brook: Hello, fellow triad patients and beautiful people who care about triad patients. I'm Jill Brook, your horizontal host, and today we have two very special guests. The first one you probably already know. Dr. Leonard Weinstock is one of the most hard working, hard thinking researchers and physicians when it comes to patients with complex syndromes.
He is the gastroenterologist who chooses to research complex syndromes because, as he likes to joke, they are the Rodney Dangerfield of medicine, they don't get any respect. And he is bringing that respect and relief to many as an amazing physician and a powerhouse researcher. He's beloved by his patients, colleagues, and since I do some of his statistical analyses, I know that he works on evenings, weekends, and vacations, which right now is one of.
Dr. Leonard Weinstock, we owe you so much gratitude for being here. Thank you, and who have you brought with you today?
Dr. Leonard Weinstock: I've got my grandkid, Max, here with me.
Jill Brook: Hello, welcome.
Max: Hi, [00:01:00] I am Max. I just turned 11 on October 15th, a few months ago. And I'm in middle school, and you know, I, I really like art and I, I just, you know, like many, you know, common things that an 11 year old might like, but there's one difference. The fact that I have MCAS.
Jill Brook: Okay. Our audience knows about MCAS. How did you come to learn about MCAS?
Max: Well, my grandpa was kind of like, he was researching this of course and I was overhearing the conversation and my mom was like, that's been happening to Max a lot and and that's you've just you know said everything that Max has been having, and so they you know talked to me about it,[00:02:00]
my grandpa talks to me about it. And as soon as I start taking the medicine it's like a complete switch like it's just like boom, done.
Jill Brook: So can we back up a second though? So can you tell us, like, what was your what was your symptoms that were going on when you first noticed something?
Max: So like, nausea, extreme anxiety, stomach aches and like headaches and just all of the above basically.
Dr. Leonard Weinstock: What about things that you saw in your body? Like...
Max: Oh, like, like bruising and like burning on my skin and like itchiness on, itchiness on the palms.
Dr. Leonard Weinstock: On the palms. Yes, which I've not seen before, but they had it.
Max: It's done. Medicine like fixed [00:03:00] our problems.
Jill Brook: Really must be nice to have Dr. Leonard Weinstock in the house.
Dr. Leonard Weinstock: It was a while that they were having abdominal pain, and I asked my daughter to start them on antihistamines just to see if that would help because I didn't really want to be Max's doctor being A, a gastroenterologist for adults and B, being their grandfather. But you know, I thought this was important.
I kept on bugging my daughter. Get them to a gastroenterologist. Well, that'll take three months to get them in. I said, well, you know, do this and that with the diet and so forth and see what would happen. And the most disturbing thing to me was coming down for a visit to Nashville and giving Max a hug and feeling skin and bones.
And it turns out, there was [00:04:00] no growth over one year, and body weight dropped 15%. So, that was really critical. And then, later on Leah, Mom, listened to a podcast that I was involved in and talking about how young MCAS patients often have panic attacks and ADHD. And she calls me up and says, Dad, this is what's going on here.
Max: I think I've had ADHD my entire life and that'll never go away. I'll be very honest.
Dr. Leonard Weinstock: But anyway, that's kind of how this started and then got the literature and the ideas to the doctor, finally both the primary care and finally the gastroenterologist. They were able to do an endoscopy, biopsy, do the blood work, [00:05:00] and each blood and biopsies proved MCAS.
And finally, as Max alluded, the most important thing is that mast cell directed therapy helped the symptoms go away.
Max: Exactly. It was amazing. It was a life changer.
Jill Brook: Really? Can you talk more about that? And I guess I have a question for each of you, and you can decide who goes first. Max, I'd love to hear more about what changed, how fast did it change, and, and all that good stuff.
But I also want to hear from Dr. Weinstock, is it normal to see MCAS this young? Or is it just abnormal to diagnose it this young?
Max: So, originally all those symptoms were happening and my parents really didn't know how to, like, they, they tried to deal with it, but it was, it was a lot to take care of me and to just, like, adapt to all of this mess.
And at the same time, there was, like, [00:06:00] my stomach always hurting and not wanting to eat, feeling nauseous, which really, like, made me, like, and I, I could see my ribs like, and of course I've gotten healthier. From last November, we, it started getting a lot better when I started doing that, which fixed that problem.
And personally, I think that anybody that's a child that has MCAS, I think it's, I think they should take the medicine. I mean, I'm not a doctor, but it was honestly like changed my entire life.
Dr. Leonard Weinstock: Well, you may well become a good doctor, a great doctor as a matter of fact and because you're going to be smarter than the rest and more open minded, which is part of the big problem in medicine today, that this subject is not taught.
It was only discovered in [00:07:00] 2006, which is relatively short when you're talking about a new field in medicine. And we need more awareness.
Max: To make people's lives better.
Dr. Leonard Weinstock: And to have doctors know what it's all about and believe it because many doctors don't believe something where a person can have so many symptoms.
Jill Brook: And that's kind of the theme across all of the different syndromes that you've studied, right, Dr. Weinstock? Is that why you think that they tend not to get respect?
Dr. Leonard Weinstock: Absolutely. I mean, it's a matter of how you can have headaches, skin problems, thyroid cancer in the rare person but at a higher incidence than younger people, breast cancer at a higher incidence but not necessarily that frequent, but certainly more than the general population.
I saw a gentleman who had multiple [00:08:00] fractures at a young age and osteoporosis occurs in mast cell activation syndrome and mastocytosis, and you go on down to itchy skin, nodules, problems in the abdomen ranging from constipation to diarrhea to bloating to nausea, cramps. Exactly. Cramps are a big one.
Max: And may I add the fact that the medicine really does change it, but since we don't know as much about it, and it's only been researched so little by only a few doctors, the medicine like it works, but I still have these symptoms from time to time. So it's not like it fully went away. It's, it's a really good start to know that it's working and that we need to work on this to make people's lives and bodies feeling better.
Dr. Leonard Weinstock: [00:09:00] And we're actually going to work on that now. We just increased your dose of the naltrexone from 0. 1 to 0. 2. So we're going to keep on working that because naltrexone, LDN, low dose naltrexone is one of the strongest medicines I've got in my toolbox to help abdominal pain, skin rash, food allergies.
It's dramatic how many different things it touches on. And that's also something that most doctors don't know anything about. And in fact, yesterday I was talking to a friend of mine who is an advanced provider, a real thinker, said that a person in her old medical group will just take people off of LDN because she's never heard of it. And that's like crazy.
Max: Because it's a big helper.
Dr. Leonard Weinstock: It's a big helper.
Max: Also, you just upped the dosage [00:10:00] like a week ago, like a few days ago and it's already been working.
Dr. Leonard Weinstock: Well, it wasn't perfect today, but it gonna get better and better. You'll see.
Max: It's yeah, it's really working out and I think that if if more doctors and and like everybody tries to thoroughly, like, research this, then we could maybe find even a cure, which would be insane, but not only that, but I had someone at camp that had, that, who is a, who is an older woman, and she said, and I said, I have MCAS and she said, Oh yeah, so do I.
And I was so surprised because not many people know about it. She's had it for around 60 years and she didn't know it until like two years ago or no, not two years ago, like one year ago.
Dr. Leonard Weinstock: Wow. That's interesting. Yeah. Quite a number of patients that [00:11:00] range from 18, the youngest I normally see patients, to 85. And about 10 to 15 percent of my patients are in their seventies and eighties.
So It doesn't stop, nor does it start then. It just gets recognized after decades of suffering.
Max: Mm hmm.
Dr. Leonard Weinstock: And, and then let me just say your question before is, is it uncommon to have a 10 year old kid, no, when you started it was 10.
Max: Yeah, I was, when I started.
Dr. Leonard Weinstock: 10. Have, MCAS. No, the fact is, it was earlier. There were things that you did as a young kid that were, very interesting and comical.
It was so hard to get your attention when you were like two, three, four keep on adding to that. When you're concentrating I could not just get to you Hey Max, can you do this? [00:12:00] Max, no I'd have to go Max, M A X I'd have to. And I asked you, what's going on in your head when this is going on when I can't get your attention. And you said and I'll never forget
Max: There's a dance party in my head.
Dr. Leonard Weinstock: There's a dance party.
Jill Brook: Wow.
Dr. Leonard Weinstock: You know and I think that's you know a form of obsessive or ADHD or something that you know makes you concentrate so hard on what you're doing you shut out the rest of the world.
Max: Yeah.
Dr. Leonard Weinstock: Yeah.
Jill Brook: So Dr. Weinstock, are you able to talk about any of your other projects right now?
Because I know, I know we've mentioned the film on the podcast before, but you also have some, some exciting research coming out that has to do with some of this stuff, but I don't know if you can talk about it. And it's okay if you can't.
Dr. Leonard Weinstock: Oh, I can. So I think the most exciting thing is micro dosing [00:13:00] the GLP 1 drugs.
So those are things like people have heard of Ozempic and Zep Bound and Wegovy and so forth.
Max: I've literally never heard of any of those in my life, but continue.
Dr. Leonard Weinstock: Okay, I will. So those are the weight loss drugs.
Max: Ah.
Dr. Leonard Weinstock: But, what happens is that they also have been shown in lab studies to reduce inflammation, and that's what MCAS is all about is an inflamed, perpetually inflamed state.
And what we're finding are patients can take one dose and immediately feel better. And I just posted a story of a woman who just started two weeks ago. She increased her dose and didn't feel that good. And so I'm going back to the first micro dose and not escalate her and she has Tourette's and this was the first time she'd stopped
having these guttural [00:14:00] sounds and movement disorders in her neck. So, she also was able to eat things that she couldn't eat for months. And so we're doing a case series of that, and I think it's going to be very exciting. Of course, it's not going to be, you know, perfect for everybody, and there is no drug that's perfect for everybody, but it could be winners
for many. And then I'm doing a paper with the famous Jill Brook on the incidence and prevalence of different conditions with Mast Cell Activation Syndrome, and that will include neurological conditions, 22 neurological conditions, 12 psychological conditions, and a host of ENT issues. So the ears, nose, throat doctors will often see patients with tinnitus or runny nose.
Yeah. Yeah.
Max: Yeah, definitely.
Dr. Leonard Weinstock: Do [00:15:00] you have runny nose?
Max: Yeah. Well, before.
Dr. Leonard Weinstock: Yeah. I didn't know that. I didn't know that. So there you go. A ton of otolaryngeal disorders have been described and we've actually have now the data to show how frequent it is compared to controls. And I know a bunch of your listeners took the control test and we thank you for that.
And so that's exciting. So there's some studies that we're doing now.
Jill Brook: Yeah, a lot of amazing stuff coming out and when you were first telling the story about the GLP 1 helping with Tourette's, I was assuming some listeners were thinking, well, Tourette's, what does Tourette's have to do with mass cell activation syndrome?
But what our other studies are showing is that there's a much, much higher incidence of not only Tourette's, but a lot of other neurological and psychiatric conditions and symptoms in the mass cell population. I guess it's quite hopeful, right, because maybe some of those mast [00:16:00] cell directed drugs that are relatively safe, relatively cheap, might help.
Dr. Leonard Weinstock: My patient with the Tourette's she found me, by the way, just by putting all her symptoms in a Google search field and clicking a button and it popped up with my name and St. Louis. So, it was funny, but she told me, you know, all of her symptoms and it was very in depth conversation and finally, you know, I'm getting up .
And they said, Dr. Weinstock I didn't tell you about my Tourette's syndrome, which with subsequent conversations was the biggest problem in her life, and had been so for years. And then there's an article talking about the inflammation in the brain that is the main cause for Tourette's Syndrome.
And but nobody knows how that inflammation gets there.
Jill Brook: Oh man, that's so interesting. [00:17:00] So interesting. Max, did you know that your grandpa was such a hero to so many patients?
Max: Yeah. He's been a hero to me.
Dr. Leonard Weinstock: I don't think his mother gets it, but that's okay. She's a busy mom.
Max: Yeah.
Dr. Leonard Weinstock: But I think she's pretty happy now that...
Max: That she doesn't have to deal with the shenanigans of MCAS.
Dr. Leonard Weinstock: Well, you weren't easy because you weren't feeling well. And so, and they didn't believe you initially.
Max: They thought I just wanted to like, go home. Because I didn't want to be at school nurse every single day.
They thought I just wanted to go home. But I really, like, actually didn't feel well. And it was every single day.
Jill Brook: Yeah, you seem to have a really good attitude about all of it.
Max: I mean, I'm just happy that we know what it is. Even if we haven't found a cure, but at least we [00:18:00] know what it is and we can find out more about it.
And that's what makes me happy. Because I want to make me and others lives better. You know, better, and have a happier life, and just, just live, basically.
Jill Brook: Yeah. Yeah, and, okay, so there's one more project that you guys are involved with that is working to do just that. And you've been working on it for a couple years now.
Do you want to talk about that? The film?
Dr. Leonard Weinstock: Oh. Absolutely. It's a passion of mine to help with awareness. And I came up with this idea years ago and we started thinking about it. And then guess what came? COVID. And also the estimate that it would take a million dollars to create a movie [00:19:00] or a documentary.
And so that went down into the toilet and only emerged after COVID was over and things were straight in my life and going well. And I said, we just got to go back to this idea of having a medical documentary about the triad, because it's not going to be taught in med school anytime soon, unless the dean of the medical school has a
granddaughter or grandson with the triad, and he realizes nobody knows what's going on with his granddaughter or grandson. So, I mean, until that happens, it's just gonna go slow, if not anywhere. And so...
Max: Or maybe downhill.
Dr. Leonard Weinstock: Or maybe downhill. And certainly for downhill, for people living in this climate, which is getting hotter, which is a known trigger for mast cell.
Max: Oh, yeah, definitely.
Dr. Leonard Weinstock: [00:20:00] Definitely.
Max: Definitely. More panic attacks there, and like, itchiness, and like, just, just everything, basically.
Dr. Leonard Weinstock: I learn something from you every day, Max. So anyway, we are doing this documentary. I think it's going to be good. I'm excited for the potential. We need to do some more editing and a little more film work.
And then we're going to present it, hopefully, on 27th of February, the last Thursday in February, and it might be later in some areas of the country, but it's going to be presented by individuals who have been involved with the project from the beginning and live presentations so that we get an idea of how many people will come.
And that's what the producers and the marketing people have to know before they take it to a cable network.
Jill Brook: That's so exciting. And people can go to mcasfund. [00:21:00] org to check it out and learn more and consider supporting it if they want. We'll put the link in the show note.
And, and it's exciting. And you know, Dr. Weinstock I'm always amazed at your capacity to care. I mean, obviously you're brilliant and you do tons of research and you do more studies at the same time than anybody I know, but it's, it's also your capacity to care so much and, it seems like you never get burnt out, you, you have so many conversations with so many complex patients and you take the time and you take their emails and you talk for a long time and I don't know if you have any secrets or how we can get more doctors like you, but I'm just so grateful that we have at least one like you.
Dr. Leonard Weinstock: I am, you know, on a personal note, I will say, you know, and there are people who say, well, I was born to do this and born to that. But if I could have [00:22:00] learned what I've learned and learned it from you, Jill, actually, because you're my first patient and it led me to Max to recognize what's going on, so they wouldn't suffer for decades.
Then everything I do in life is pointing in this direction and helping Max.
Max: And other people too.
Dr. Leonard Weinstock: Yeah, but you're the most important patient I have.
Max: Well, cause you're my grandpa.
Dr. Leonard Weinstock: And I love him.
Max: I love you too.
Jill Brook: Oh, you guys are amazing. Let's end it there. Nothing can be said that's better than that. Max, Dr. Weinstock, thank you so much for coming here today. Thank you for all the work that you're doing. Max, thank you for helping to spread the word. And boy, Dr. Weinstock, thanks for everything you're doing. And we just love you guys to death.
So, hey listeners, that's all for today, but we'll be [00:23:00] back again next week. And until then, thank you for listening, remember you're not alone, and please join us again soon.
