MCAS, POTS & Histamine Intolerance: Hidden Drivers of Chronic Symptoms | Michelle Shapiro, RD

26:08Gabrielle Lyon:Or is it over time, for example, the person who eats a ton of bananas one day can't tolerate bananas, or I used to eat, you know, like my producer chugging vinegar, he maybe could do it and then all of a sudden he can't do it anymore. Absolutely. Yeah. So it depends on where you are in that bucket theory, right? Have you had a lot of other environmental toxicants, stress? Have you been exercising too hard? And exercise is something we have to talk about because it's not sad because exercise is essential for POTS especially and MCAS, but everything's about titration and everything's about creating safety in the body first and you have to do things in a certain order.

26:45So the answer is this. Does a low histamine diet treat the root cause of MCAS? A little bit, but not totally. The way that it does a little bit is because unfortunately our body has this very odd mechanism where the more histamines that are present in serum, the more the body creates histamines, which I'm like, don't do that. We have enough clearly. So the problem is if you eat high histamine foods, it enhances this cycle that continues as well and can cause drastic symptoms. And when I say drastic symptoms, I mean violent digestive issues for days at a time. Could be all the way up to vomiting.

27:20It could be migraines. I mean, these are really, really intense symptoms, not just that little rash that people think of, which is also a common histamine symptom, of course, as well. But these symptoms are so drastic. And it is hard because you can have a reaction within minutes or the reaction can be delayed like 12 hours later.

27:37Gabrielle Lyon:That was going to be my next question. does someone have an immediate reaction? And if we're thinking about diet, obviously you're removing those things. Is that the first step? Yeah. So I would say in any protocol, so this is the same thing with supplements. And when we were talking about supplements, vitamin C, vitamin B, especially glutathione, anything that's enhancing that detoxification or immune system response. But really people with mast cell activation syndromes, I think of our bodies as, and these highly sensitive bodies, as bodies that are on guard. So anything that's perceived as a change to the system can be really challenging.

28:14So it's those supplements that enhance the immune response, mitochondrial response, or detoxification, or anything that's new to your body, unfortunately. And it really depends on the state because I can eat 10 bananas a day one day. The next day, if I took a flight and my mast cells are already irritated, I might not be able to tolerate them. So it is really challenging to kind of chase. But in the beginning, you have to stabilize two things. Of any mast cell journey, you have to stabilize your histamines and you must stabilize your nervous system because our nervous system and our immune system are intricately connected.

28:49And in mast cell activation syndrome, there is no way that your mast cells can be calm if your nervous system is hyperactive, because that's the number one signal for our mast cells to activate. And they literally communicate with each other. Mast cells are also considered neurotransmitters and are released by our hypothalamus as well.

29:09Gabrielle Lyon:With histamine stabilization and nervous system stabilization, can you give me a sample-type protocol? And we've actually worked on quite a few patients together. And there's this one patient that I'm thinking about, and this was... she had long COVID and we should talk about long COVID ACE receptors and this MCAS connection. We started her on Pepsod. We gave her a handful of items and it seemed to really improve her symptoms. So let's start with that. Yeah. And I'm going to actually mention a case study with a different client and why Pepsod even came up to me and why I even started thinking about Pepsod.

29:53I had a client who was on eight psychiatric medications. Actually, she had a fantastic psychiatrist and it was all for insomnia. She had untreatable insomnia. She was sleeping one to two hours a night. Then maybe like the third night she would get like five or six hours. But it led to the point where she had like paranoia and hallucinations. Her insomnia was so severe. In my emails to stay up to date, I always get these medical lectures.

30:15Gabrielle Lyon:And I recently listened to a lecture from an academic MD-PhD about magnesium. I have to tell you, it completely changed my perspective from a scientific point of view on magnesium. One of the most common causes of headaches, you won't believe it, is a magnesium or could be a magnesium deficiency. And you can test for this in the blood. There are hundreds of biological processes that magnesium is responsible for and the absorption in our diet is not great. And after listening to this lecture, I am more convinced than ever that taking magnesium can be helpful. Also, 75 % of Americans are deficient That means three out of four of you listening to this podcast may be deficient.

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31:45and at some point I started noticing she had other histamine reactions so I said why don't we try pepcid which is actually an antihistamine the reason I even thought of pepcid is because I had seen a study um they studied 16 people out of who were inpatient in a hospital and they found that 14 out of 16 of them had an 80 reduction in symptoms with the intervention of 80 milligrams of famotidine which is pepcid and I was so shocked because I was like what the heck does pepcid have to do with long COVID symptoms? Why would that make a difference? And it's actually because Pepsid is an antihistamine, which most people don't know.

32:21And I think this is a little speculatory, but I think because it works on the gut, I notice it helps with a lot of neurological symptoms for people and nervous, like numbness, tingling, that zingy feeling, because I think it's the vagus nerve impact. So it works even better than some of those H1 receptor medications. So she took Pepsid and it's been five years. She's never had trouble sleeping since. Obviously, she worked on the rest of her medication protocol with her doctor. Dietitians actually can recommend over-the-counter medications. And we worked on that together. And she has not said the word sleep to me in five years, basically.

32:55So weird. Yeah.

32:57Gabrielle Lyon:That's wild. Someone listening to this and they wanted to take matters into their own hands. Obviously, we always suggest we don't give medical advice here, but this is for educational purposes only. you start a lot of your patients on pepsid that have this do you take them off of supplementation I know that you use a lot we both use a lot of electrolytes yes absolutely tell me a little more and why what yeah it is that we are using so the first round for us is always those two things histamines nervous system the deal with histamines and the mcas is that you have to kind of radically drop those histamines down because if you're in that symptomatic state your nervous system is going to be so active and it becomes this cyclical um state of existence and unfortunately for people again gabrielle we're really talking about people who are mostly many of them are unable to work because if they walk into an office where they recently used bleach they're having a potentially asthmatic reaction to it right they're having um such a severe reaction to environmental triggers or going out to dinner with friends and having something that's super healthy and ending up, again, violently ill.

34:08So in the beginning, I will often, even as a dietician, recommend over-the-counter medications, a combination of H1 receptor, medications like Claritin, Allegra, or Zyrtec, and then probably a combination of Pepsod as well. The question that's going to come up in your amazing medical community is, well, Pepsod lowers stomach acid, and low stomach acid is a huge problem, Michelle. So in this population, it's interesting because they actually may have higher stomach acid because stomach acid and mast cells releasing histamine, it's a direct relationship. Higher the stomach acid, higher the histamine release, higher the histamine release, higher the stomach acid.

34:48This all happens on the parietal cells. H2 receptors are very, again, there's this cycle that happens. So what you have to do in the beginning is, whether it's over-the-counter medications or supplements, like we use perilla extract, PEA, quercetin. Again, we can't use vitamin C in the beginning usually, but we will take people off of the supplements they're on most likely because we don't know what they're reacting to. And we will just focus on supplements that'll help the nervous system, mindset work that helps the nervous system, and then also anything related to histamines to bring down that response.

35:20Gabrielle Lyon:When you focus on their diet, is it mostly proteins? What kind of foods do you typically have them eat? yeah fresh protein because leftover foods can also again the older a food is uh the the more it can develop that histamine response so fresh meats many vegetables outside of the ones i named are fantastic fruits usually are fine outside of those citrus um and raspberries unfortunately and strawberries um but there's and tomatoes as we talked about but there's basically most whole foods most carb foods are low in histamines as well so you can eat a whole foods diet it's just being selective with those foods.

35:56So we will go on at probably an 8 to 12 week low histamine diet. There's some research about low oxalate diets as well. I haven't seen as much positive response. It's really hard because people can still have histamine issues while they're on the low histamine diet because, I don't know, they have an abusive partner and that's the reason that their mast cells are activated. So it's hard to know the exact reason, But you can see some really tremendous symptom improvement from that low histamine diet. And it's still so essential to eat those whole foods during that time and very possible.

36:31Gabrielle Lyon:So 8 to 12 weeks on a low histamine diet, whole foods, taking some form of typically an H2 blocker. And H1, a combination of H1 and H2. Yeah. H1, H2 blocker. That's one side of the equation. is there something to directly work on the nervous system would that be meditation are there other obviously you're probably they're not seeing doctors and going on ssris how are we stabilizing the nervous system by the way that's a really good point too because a lot of medications can cause drastic reactions so it's really hard for people to find out which medications help or hurt as well so when it comes to the nervous system and mass cells I have this visual for mast cells.

37:20I almost, and I feel really silly saying it here, and I hope Shane doesn't think this is extra silly, but I kind of think of mast cells as like the guards on the watchtower of a battle that just happened. They're kind of like looking to make sure they're witnessing the battle and then they're deploying resources after to help clean up the debris and also to prevent that from happening again. So the problem is that people with extremely uncomfortable and frightening symptoms get really scared when those symptoms happen. And this is what keeps mast cell activation going. It's really challenging for me to look at someone who's been sick with painful, frightening symptoms that no doctor has been able to help them with and say, I need you to be calm when these symptoms come up.

38:02And I need you to find a way to be non-reactive to these symptoms. So there are actually brain retraining programs that help retrain our limbic system, which is our hypothalamus, hippocampus, and amygdala, which will process our threat response memory and basically again is deeply integrated with this mast cell response so it's really interesting because these brain retraining programs are one of the top ways to support MCAS the GUPTA program DNRS primal trust and it starts in the brain so we often think oh maybe mast cell stabilizing medications like chromaline sodium ketotypin but in reality starting in the brain is the most important thing at home I'm not asking people to meditate and do things like that even though it's essential because the symptoms are so loud that sitting in them can be really challenging so what I invite people to do is to just ask themselves questions and get really curious about their symptoms and just ask yourself I have people just tap their heart and say what do I need what do I need in this moment and really just at home again this is temporary I know how horrible this is I've personally experienced these symptoms to an extreme degree so I understand but anything we can do to become non-reactive really really helps in the long-term treatment of these conditions and our mutual client I had that it's a hard conversation to have because I'm like it's not your fault that your nervous system is so reactive

39:27Gabrielle Lyon:but we have to find a way to feel safe again and what is fascinating about it is this is not something where individuals are usually very reactive and they're having these experiences in their body that are real and they are coming from white blood cells and and other portions of the body that are really pushing up anxiety I was reading one thing about migraines they believe that mast cell activation seems to play a significant role in the pathophysiology of migraines I'm I'm bursting at the seams to talk about this. Yes. Don't go. Burst. Don't burst too much. So one thing, one of the functions of histamines is to cause vasodilation, okay?

40:11The widening of our blood vessels. And this is, you have such an intelligent audience. They're going to be like, Michelle, please don't explain vasodilation to me. No, please do. You know? Please do. So I want someone to think of a scenario where they've had this experience where they're in the shower and suddenly they feel really dizzy when they're in a hot shower and they look down, they see their legs are red and their heart rate is pounding. Why does this happen, right? So what's happening in that situation is that heat and histamines both cause vasodilation. So if our blood vessels are wide open, we're standing in the shower, it's steamy, our body's standing up straight, gravity plus vasodilation will pull blood down, and blood will pool down.

40:45So blood pooling is a big component of both mast cell activation syndrome and POTS, postural orthostatic tachycardia syndrome. So when the blood pools in our feet and legs, you see it on the surface. That's the opening of those blood vessels. You see all that redness. and then what's happening is your heart and your brain don't have blood flow going to them. Now, of course, they have some blood flow going to them, but there's limited. So what happens is your body starts pounding your heart to get the blood flow back up to your heart and your brain. The dizziness comes because you're not having blood flow to your brain and your heart starts to pound because it's not getting that blood flow.

41:18So in a histamine response, again, what you can C is blood that's pooling in your extremities, dropping down because you're constantly having that vasodilation. All right, this is my big moment, okay? Migraine medications are what? They're vasoconstrictors, right? We think of Excedrin migraine that has caffeine in it. We think of what helps people with migraines. There's this very popular trend that's happening online where it's like, have a Diet Coke and French fries. I'm like, don't. I'm like, there's other ways. There's other ways. We think of electrolytes that help people with migraines. we think of cold compresses that help you with migraines all of these have vasoconstrictive properties migraines we've known for a long time are vasodilation issues and histamines are potent vasodilators so i believe that the root cause of many people's migraines there's many root causes of migraines can be histamine issues because of this vasodilative feature which is um i think one of the roles of histamine that creates the most havoc in the body symptom wise i have had many patients explain that scenario to me doc i was in the shower and i don't know what happened but i

42:27Gabrielle Lyon:started getting red and lightheaded how do we treat them in that moment is that a pre-treatment with h1 and h2 or is there a different way what are your thoughts on that it's the it's the exact right questions so this scenario is very common in people with this um syndrome postural ortho attack orthostatic tachycardia syndrome which we did not really yes into and i'd love for you to yeah that'll take us into that because this is one way where those two are very related i have a joke about pots the way that we treat pots in conventional medicine is we kind of create a gogurt tube through your body so we compress your stomach we wear an abdominal binder you squeeze it it helps the blood flow go up.

43:10We wear compression socks. We kind of squeeze your body like a go-gurt tube and just bring the blood flow back up, right? And you know this from all of your extensive years in practice and training, but if someone has like low, you know, blood pressure, you might have them put their legs up on the wall. Basically, the goal is to get blood flowing back up. Now, POTS, we think of as maybe that's a cardiac condition, right? It has to do with how fast your heart rate is jumping when you make a postural change. When in reality, POTS is a form of dysautonomia. Wait a second. It's a nervous system disorder.

43:43It's a dysfunction of your autonomic nervous system. So that means that treating POTS is not about treating your heart in most cases. There's different types of POTS, three. One is hypovolemic POTS, which is that you just have low blood volume. When you don't have enough blood volume, you don't have that pump. And then again, your heart will start pounding faster. We often think of POTS, we're like, why are people's hearts pounding so much? They get put on propanolol, metaprolol, like anything that beta blockers to help bring the heart rate down and stabilize it. In the case of hypovolemic POTS, the treatment is also to have not only this compression, but to have 10 grams of sodium per day additional.

44:25So we drink Element, right? Element tea. That's one gram of sodium. We're talking about 10 Element packets. And again, it's to enhance basal constriction and increase that blood volume essentially, and to help so that there is that blood flow, and that blood volume will help to enhance the blood flow. The second type of POTS is hyperadrenergic POTS, which is you're having this hyperadrenaline response. These people do not have low blood volume necessarily. They're having an adrenaline response that is causing their heart rate to go really high. Very related to mast cell, both of them. Again, in this feature of mast cell activation syndrome enhancing that vasodilation, causing leakier blood vessels, POTS and MCAS are connected right there.

45:09And it's really important. And then idiopathic POTS, which is there's actually some sort of blood vessel damage that's causing it.

45:15Gabrielle Lyon:How long does it take to treat POTS? Would you treat POTS or MCAS first? because they're almost as if so POTS is this downstream effect of MCAS. However, it seems that what I'm hearing you say is for the treatment of MCAS, number one, regardless of what is causing it, you have to stabilize both histamine and nervous system. But histamine is kind of a catch-all term for the multiple other responses it could be, right? absolutely it could be prostaglandins it could be leukotrienes it could be it's inflammation right in some level it's the immune system and then the also you need to block the histamine symptoms on some level because people are unable to work and live their lives um it's it's really excruciating there was one study out of the university of college london that stated that those with long covid which if you ask me i think it's a composite of mcas and pots in almost every single scenario had worse quality of life and more fatigue than those with stage four cancer and stage four cancer-related anemias.

46:26And it's because the symptoms are so drastic and so intense and no one knows how to help them, essentially. So I think that if you have a POTS issue, and I've never seen someone with POTS who doesn't have MCAS.

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47:27Gabrielle Lyon:You'll find recipes. I am so honored that they are helping to support this podcast and your journey to be forever strong. The Beef Nutrition Team at the NCBA is made up of dedicated educated nutrition scientists and registered dietitians who are passionate about sharing accurate science-based information. Go to beefiswhatsfordinner.com. But you said something, Gabrielle, it's going to be Dr. Gabrielle Lyon that is going to be so profound for people. You said POTS is a downstream effect of MCAS. No one says that. Just so you know, that's not common in the conversation. I believe that to be true.

48:07I have never seen a potts client who doesn't have mcas so the question is how do we stabilize him histamines to stabilize symptoms and then with pots you must recondition you have to because it's blood flow right that's a huge piece of it and you have to you have to have a tremendous amount of electrolytes and you have to hydrate really really well that brings us to exercise how does that happen how can we manage exercise dealing with POTS or MCAS.

48:36Gabrielle Lyon:And I've had patients with POTS who probably have MCAS, but the major presenting symptom is this exercise intolerance and heart rate changes. Yes. And those symptoms, I don't think we can overstate how absolutely terrifying those symptoms are, by the way. It's not just like, oh, my heart is fluttering. People feel like they can't see. It's excruciatingly anxiety-inducing. And the anxiety around POTS, especially hyperadrenergic POTS, you have this, it's like a, I can only describe it as a very full-body anxiety where you feel like there's ants crawling under your skin. You've had it. Oh, have I had it?

49:13People don't know your personal story.

49:15Gabrielle Lyon:You have had POTS. MCAS. MCAS. Hypermobility and long COVID. Which we should talk about the connection between hypermobility and MCAS. But after you finish telling us how we are going to exercise, because this crew, they want to train. Heck yes. And it's the most devastating for this crew because, first of all, being unable to exercise doesn't make exercise less healthy for us. So it's like we know the information. You have told us this information yourself. You've devoted your life to telling us this information. And it doesn't change the information. It just means that we might have to build our tolerance to it.

49:52we you know i've had so many clients gabrielle where they're at the point where they can't walk

49:57Gabrielle Lyon:10 steps so what do you have to do what do they do when they walk 10 steps they just feel out of breath or yeah so um so dizzy that they might actually faint um some that pots there's a huge fainting component to many not every single person has that symptom um their heart rate is is so rapid again that they could immediately have this like feeling when they stand up so dizzy the heart pounding so profound, it just basically like pulls you back to sit down. And those episodes from just standing up once can leave you with that anxiety and that adrenaline response for days. So it really makes people feel so frightened.

50:33And it's actually with mast cell activation syndrome, you can also have pretty profound exercise intolerance, and they would actually get full body rashes, and then what feels like a flu, basically. So the answer is how do we titrate it specifically something else that's very very important with pots is something called upper cervical instability which happens in hypermobility that i know we're going to talk about but really with pots it's about protecting your neck because if there are if there's any instability in your neck all the nerves that control your heart rate are in your neck right they're running down we talk about the vagus nerve all the time in ways of digestion and ways of anxiety but think about the fact that the these nerves are going to control that heart response and it's a it's a nervous system condition it's a nerve condition right so it's really important there's actually a type of exercise protocol called the chop levine protocol it's a free pdf they have online um it was developed for people with pots to increase their exercise tolerance all of the workouts are very specific to not be you're not doing standing up exercise to start with right you might be doing recumbent because you don't want that blood flow dropping down, not getting the blood flow back up to your heart.

51:46And then also they're really mindful of neck as well.

51:49Gabrielle Lyon:Is there one modality of exercise, when I say one modality, is it easier to tolerate resistance type training than it would be walking or cardiovascular activity? It's an excellent question. I think it depends on the person, I think people can probably tolerate low weight resistance training easier than cardiovascular to start with. It would make sense because, again, we share a few patients together. And when those patients do a lot of walking with weights, they feel terrible. And these are regular exercisers. Typically, we have a handful of patients who have had long COVID and that seems to be their response if we don't titrate it really, really slow.

52:43Gabrielle Lyon:How fast do you think, and again, I understand that this is individual, how fast do you think someone could titrate up movement? It really depends on the person. It depends on their exercise capacity before, and it depends on how much can you control those histamines honestly what about the hypermobility part you had mentioned earlier that there is um connective tissue potentially bone joint involvement in this talk to me about that so our connective tissue lines all of our joints bones and organs in our body and our blood vessels most importantly too which is what will come into play with how POTS and hypermobility are related.

53:31Hypermobility as I'm talking about it is probably a collection of conditions that are connective tissue disorders called Ehlers-Danlos syndrome EDS. I have HEDS hypermobile Ehlers-Danlos syndrome. Ehlers-Danlos syndrome.

53:44Gabrielle Lyon:Wait did you just say you have? Yeah I sure do. I remember do you remember when you called me and you were like Gabrielle you do you remember you won't believe it can you just share because this really plays into this Ehlers-Danlos. Absolutely. And just share a little bit about what you were going through. Yes, absolutely. So I had moved to, so embarrassingly for me, I had moved to New Jersey from Manhattan, but I was right over the bridge, but I needed a car basically when I got there. I had gone through a mold detox in my apartment in Manhattan. I moved to New Jersey because I had such a severe and profound mold.

54:18I mean, there was mold. It was such a good apartment. Otherwise, it was very hard for me to leave. Yeah, you did not want to leave. how long were you there i was there for two years you were there for two years so i was not planning to leave and then i walked into my bedroom of that apartment and i saw my husband it was like the movie interceller like he was coughing up along and i'm like are we in a dust storm in here i'm like we have to leave this apartment like i know i have weird reactions and i was having symptoms that were again dizziness i was like maybe this is a thyroid thing i was like oh you know i'm having gut conditions i'm gonna get a gi map let me see what's going on nothing was really showing up.

54:52I was like, oh, now I know it's mold related. So I went on a mold detox in that apartment. It was like the sickest I ever was in my life. And I just, I mean, Herx reaction, those symptoms where you feel like your body is going through such, you're in a flu state, dizziness, anxiety, insomnia. So I left that apartment. And when I moved, I had to start driving. And when I started driving, I started getting a lot of dizziness when I was driving. And I was like, I thought these symptoms were gone. I then had COVID again. And then I went to a chiropractor and the chiropractor did an adjustment and he said oh my you know i've never felt a neck this tight in my life so he took this like metal tool and chiropractors who are listening are gonna be like i know the name of the tool i don't i'm sorry dug into my neck did not assess me for hypermobility and basically on a very small level loosened the joints in my neck i walked out of there and i don't i actually don't mean i walked i crawled out of that appointment and i crawled directly to the er um i could not stand up without my heart rate going up to 160 i mean i i was sitting it was 80 160 within one second i crawl i was on the phone with my sister crawling on the cement in an urban place crawling to the er i said what just happened to me um i it took me a long time to understand how mass activation syndrome and because i kind of knew there was a histamine thing i kind of knew that something was going on but to pull this all together wait it was

56:13Gabrielle Lyon:this when you i i think i would i wanted you to come to something and you were gonna come but you weren't sure because and then you were wearing a neck brace was this during that time do you know that I would risk my life to do a talk with you by the way so this is the funniest thing you were doing we were it was for your book we did a Q &A for your book and you invited me and it was one of like the biggest like like the biggest joys of my life and I was like all right Gabrielle I cannot fly to come see you but I will I will film in Manhattan you will film there I came in a neck brace my tolerance for even sitting up because my the hypermobility situation was so rough and again he had the chiropractor had loosened all the joints in my neck my nerves were so inflamed from that and your brain has to send the signal to your heart to pump that's what i think people don't understand about pots it's not a heart condition it's a brain condition your brain says send blood flow here activate this muscle do this in hypermobility which is a connective tissue disorder that relationship is not there and we also don't have the structural support because connective tissue holds us up and it gives that structural support so if you don't have proper connective tissue development and someone goes like this with your neck what's holding your neck up so i went to that i went to that q a with you and in between takes i would take off my neck brace i was literally we can show people the video i was like this i was like so tell me about forever strong i was like and you're like a great job but we didn't use it we did not end up using that yeah but you didn't know you had ehlers-danlos and i want to talk a little bit about it's a it's a group it's a genetic disorder and it's mixed connective tissue it is is it uncommon i think there are degrees to it so it the amount of women who are hypermobile but don't you can hypermobile and just have um basically like just different joints in your body are hypermobile but not have ellers danlos the numbers are over 60 i believe of women are hypermobile so hypermobility is not necessarily a connective tissue disorder the rates of hypermobility are very high though and people also need to work out differently when they're hypermobile which many amazing chiropractors personal trainers know and i actually have a personal trainer who specifically works with hypermobility shout out to taylor goldberg she's the best um and shout out to Taylor Goldberg you know you've got Michelle Shapiro I said Michelle do you want to come train with us this morning she goes ah no I am gonna stay at the hotel gym and I'm gonna lift my 15 pound weights that's exactly right um yeah and Taylor tells me what to do she's one of the only people I let bully me besides you Taylor you're fired but uh okay well I guess you also threatened me and said to go in the ice plunge I'm like you gotta give me a break oh yeah I am really actually glad you brought that up i do want to talk about other modalities first so i'm gonna write this down ice plunge yes and and for it's all a way to talk about yes yes how can someone assess for ehlers-danlos and what is the relationship between ehlers-danlos and the association with them, Kaz.

59:23Yes. So Ehlers-Danlos Syndrome, there's 13 different types of EDS. Hypermobile EDS is one of them. There are genetic tests for almost every other type of EDS besides hypermobile. That's done through assessment, basically. But there's some genetic markers that lean towards it, like Cole 5A1. There's some that we know. There's one type of Ehlers-Danlos Syndrome that's really important for us to talk about because it requires additional testing, and that's vascular EDS, which means that again your blood vessels can become leaky and this is if someone has vascular eds they could die in pregnancy it's a very it's a profoundly important thing that we anyone who has ellers daniel syndrome gets an echocardiogram not an ekg an echocardiogram because you have to make sure um that there's not going to be you know even like a rupture um of those blood vessels so just understanding how important our connective tissue is uh there's assessments that can be done and also genetic diagnostic features for EDS as well.

1:00:24So if our mass cells live in our connective tissue, and you have taught us this more than anyone, Dr. G, is our connective tissue, like our muscle, is endocrine facing, it's immune facing, it doesn't just sit there. And if we don't have the structural support from connective tissue, and if there's connective tissue dysfunction, and our mast cells live in our connective tissue, there's going to be communication errors that happen. And that is going to activate mast cells. And the same thing with POTS, you have constant mast cell activation syndrome that can lead to leaky blood vessels as well with the constant inflammation and the vasodilation pushing outwards.

1:01:04And then you have this kind of cluster of what we call the triad, which is symptoms from any direction.

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1:02:45Stay hydrated, stay strong. The biggest challenge is, well, are you having a hypermobile symptom day or are you having a mast cell symptom day? Because there's different symptoms for each one of these. So it can be challenging, but I know my client's body so well where I'm like, all right, it's a hypermobile day. ice up and something i need to mention because it's your podcast of all people is that one of the most important things we can do as hypermobile people is build muscle because we do not have the structural stability from our connective tissue something's got to hold us together right muscle will put those bricks those building blocks in your body to hold you together and get that proper blood flow because there's this severance of this brain blood flow connection that happens in hypermobility and you have to have muscle to reestablish it and to structurally hold you together it is the only like it is the most important thing we can do what i'm hearing you

1:03:40Gabrielle Lyon:say is that muscle is the organ of longevity tm the most important structure in our body i really have to say it it absolutely is and it's 100 the thing we can control it helps with pots it helps with hypermobility and because it has this anti-inflammatory effect it also helps with MCAS this makes me think about a sport injury for example you know I I'm not sure the amount of mast cells that live in any portion of the tissue for example in your connective tissue your tendons do they live in tendons and ligaments as well just connective tissue just connective tissue if someone injures their connective tissue in some kind of sporting injury would that cause a cascade of mast cell activation a hundred percent absolutely yes especially because it's in your joints too and there's you know there's kind of this like echo reaction that happens our entire body is so intricately connected we like to think that if we have anxiety it's in our head we like to think if we have an injury in our leg there's systemic communication between injury and also injury is going to stimulate your immune system as well so absolutely the sauna and cold plunge i i've been trying to get you to do that i use this all the time the mast cell activation obviously there's different phenotypes for lack of a better word whether you are muscle activation with small intestinal bacteria overgrowth whether you have pots and muscle activation or you have Ehlers-Danlos and mass activation.

1:05:22Gabrielle Lyon:Are there adjunct therapies that are more beneficial for one group than the other? Yeah, absolutely. I think cold therapy and ways of cold compresses on your neck is really powerful for POTS, again, like vagus nerve support. So we talked about step one and step two with MCAS. What do we do? Stabilize histamine, stabilize the nervous system. Well, what's the rest, right? What fun do we get to have after? Once you have your immune system and your nervous system stabilized that's when you get to have fun because that's when you can say let's go for a mold detox let's use infrared sauna that's how you're defining fun we can't wait a second that's how you define fun are you kidding me i came here to visit your family i was thinking it was rocks and yeah but for you more intense exercise is fun and it's true because then you can start to dig at the root cause after so you can do all of those root cause things.

1:06:16It just takes more time. You have to stabilize first. So infrared is tremendously supportive from a detoxification perspective, from a nervous system perspective, in innumerable ways that Dr. Alexis Callen has told us about so many times. But it really can be so helpful for those with MCAS, and it can be really soothing for people as well. But infrared is a huge bucket filler for MCAS in the beginning. So when you are still stabilizing histamines or stabilizing your nervous system, we cannot push detoxification and we cannot push heat changes. Because much like exercise intolerance, heat intolerance and cold intolerance and temperature changes can trigger these symptoms.

1:07:00Gabrielle Lyon:Okay, I cannot validate some of these items on here, but I want to talk about them. And that is a histamine-estrogen connection. Women with histamine issues, from what I'm reading, often feel sick days 6 to 11, days 19 to 21, rather than when they have menstruation itself. Is this validated? Yes. Okay. Yes. Talk to me. Totally validated. Histamine-estrogen have a direct relationship. It's a well-known, well-established relationship. so when you have clients coming to you any of us have clients coming to us with regular PMS symptoms PMDD there's a very targeted window that we assume that symptoms are going to happen they're going to happen the week before someone's period comes in those with histamine issues or POTS their symptoms generally start about day seven of their cycle it could even be as early as day six and then up until ovulation so when estrogen starts getting released that's when the histamine reaction starts so it's not even at the peak necessarily that people experience it but on the way to ovulation and then there's a second estrogen spike in the middle of our luteal phase and people will notice around 19 to 21 another set of histamine symptoms this was one of the hardest things personally for me to figure out i was on reddit like why feel sick when period end like what where are you getting that information like to establish this connection and it's so exciting for me to talk about because just knowing information about histamines can be healing and that's not the same for leaky gut that's not the same for other conditions understanding okay i need to maybe slow it down in ways of like my vinegar intake during days you know 6 to 14 and just be mindful of that or i need to take my antihistamines on those days because you can then understand what is going on in your body imagine you just feel really weird every day seven of your cycle like everyone's like what is this so it's a clear and established connection and it gives people a lot of relief to understand why their body might be operating on a different system.

1:09:08Gabrielle Lyon:Another thing that I'm reading here is that increase in estrogen increases histamine release. What about those on for example an estrogen patch? I have but in our practice in strong medical I have very rarely seen patients go on an estrogen patch and say they feel worse. Maybe they don't notice it is there is this true is this something that you see but they're also on progesterone we never give unopposed estrogen and maybe it's the progesterone that helps regulate it the ratio is important as well of estrogen to progesterone so i would say in all of my clients who are on hrt and have mcas they do notice a reaction with estrogen they also notice reaction with progesterone even though progesterone is actually mast cell stabilizing it can create issues because progesterone causes laxity in our joints.

1:10:00So that can cause hypermobile symptoms for people. So it's like a catch-22 a little bit. However, if someone needs hormone replacement therapy, we have to find a way to reduce the symptomology to have them tolerate the medication that's essential for them. Do you find similar symptoms? For example, someone who is using an estrogen patch and

1:10:21Gabrielle Lyon:the subsequent histamine release? Yes, I do. What is it? So it's the same reaction. Whatever their, I say mast cells show you the symptom you want the least. For me, I hate insomnia. I hate dizziness. So that's, my nervous system gets reactive, right? Versus someone else, they hate having cold symptoms or a rash that scares them. You know, it's like histamines will get your attention in the way they need to. So depending on what your symptoms are, digestive, nervous system, urinary, rashes, or otherwise, that's what will show up for you and your flare state. also reflux is not just a stomach issue absolutely often a histamine response absolutely would that happen in general or just after being provoked meaning after they ingest something uh so it can be that you just have this hyperactivation and this the parietal cells releasing too much stomach acid and being signaled again because the h2 receptor so it can be that someone with mast cell activation syndrome just has a lot of acid reflux and I this is a really little hack is that baking soda both stabilizes mast cells and helps with acid reflux so it's like a really eighth of a teaspoon in water like little hack that people can do especially if they don't tolerate pepcid um but I don't use pepcid for acid reflux by the way I use it for histamine issues which is really funny because that's how people usually and you use baking soda for acid reflux yeah exactly it's like the it's like totally flipped exactly um but and we will say it tastes disgusting it's horrible it's salty it's not like salty in a fun element way it's like a salty in a bad way like armpits or something yeah it's bad not that i taste armpits but but it i will say and there's also tri salts um which can be really helpful for people as well but a lot of reflux what i'm focusing on is how do we soothe so it might be slippery elm marshmallow root um herbs that can be supportive but a lot of the reducing the inflammatory histamine response is also just about reducing that inflammation not only reducing the acid output are there supplements that could be beneficial meaning fish oil or other items that seem to taper it that we haven't really talked about for hits for mcas specifically yeah i think resveratrol is incredible quercetin perilla extract pea um i so i think most people with histamine issues have a major omega-3 issue but most do not tolerate fish oil still too reactive um they take it and then they might get itchy or whatever their histamine reaction is and also um people with because in ehlers-danlos syndrome you're going to have junctions and joints and flaps that are going to move slower your digestive tract is going to move slower um things are looser along the way you're going to have a different slew of digestive issues so a lot of people who take fish oil may experience bile reflux and reflux as it's harder to digest things.

1:13:16Really interestingly, a feature of digestion that actually links POTS and hypermobility together is that people feel really dizzy after they eat when they have POTS. And this because blood pools in your digestion away from your brain. So I will have people literally wear a little abdominal binder, like an ACE bandage around their waist when they're eating and the dizziness goes away.

1:13:37Gabrielle Lyon:that it i mean i i don't think i've ever heard that before but it makes sense is an individual hopeful for a full recovery or is this something that they live with always if you are not hopeful for a full recovery you're not going to recover in my opinion so absolutely i would say that like for myself for instance i took an antihistamine because i've got an airplane to come down here woohoo um other than that i go months without taking them i can eat every food except for pickles i can exercise in my way dr gabrielle and exactly but um absolutely and the i think the language around all this is that you can never these are mass cultivation syndrome pots are syndromes right they are not intended to necessarily be lifelong conditions is it something that people may have to manage yes do i have hope for almost every single person that they can live a life without having to think about it and kind of live a life that's really custom and cater to them?

1:14:37Absolutely. And because our mast cells and our nervous system are so related and because POTS is a condition of our nervous system, you must think like that. That is the number one difference between those who heal and those who don't is they believe they can heal. I couldn't agree more.

1:14:57Gabrielle Lyon:I typically, you know, when we see patients, it's if those patients believe, and it does sound, I don't want to say woo-woo, but there is something like that. But there is something in the inherent belief of a person who gets better versus a patient who doesn't. this is the what makes these conditions so unique is that they are nervous system related disorder so it's it is directly responsible for the symptoms you have now how do I look at someone and say you have to find a way to not react to these symptoms because I'd say half of the symptoms we see are from the actual reaction itself and then half are from how our mental state reacts to those like you must find a way so story about myself is that after that chiropractic incident um i the insomnia was so profound i could not move my head an inch and i more importantly could not sit up so i was still seeing clients and i would prop myself up against the wall and i'm like do you want to see me like this or you want to wait three weeks and they're like no no i'll take you like this it's fine i'm like i'm just going to keep seeing i'm going to a talk in the city oh my god the uber to that talk i wore a neck brace a back brace i held on basically any movement was triggering my heart rate to go up really high is that what someone with pots would experience yes some with pots and uh upper cervical instability combined basically how long did it take you to get diagnosed so with um i i ran a genetic test for hypermobile ehlers-danlos syndrome and so yourself you can do yeah you can order them yourself online but i had i had annd and md review them so pots but i'm well i guess what i'm getting at is that's very forward thinking i had to figure a lot of it out myself it's hard it's true so mcas my serum histamine serum trip tastes were exceptionally high so that and that was um with a functional medicine doctor and that was that was like four years ago so that was the first hint and they ran that and that really helped me to understand the connection um pots and pots when i was in the er and the doctor was didn't even have to do a tilt table test he was like stand up again sit down again and and i said i have no i'm just telling you my heart rate is normally very low my blood pressure is normally very low and i'm telling you that because this is abnormal and that's really important when people go because often doctors will say you have high blood pressure that's what's going on here you have high heart rate and i was like i need you to know this is atypical but the doctor was like stand up sit down and i and he was like okay you need to look into pots and you need to see someone for pots um and you went to the cardiologist um i went to an interventional cardiologist who is someone who can diagnose pots did the tilt table test and got that diagnosis and then i i ran the genetic testing and had it reviewed by annd for ehlers-danlos syndrome and all along the way was trying to figure this all out because i'm telling you it was me a neck brace and read it and i was like why leave chiropractor can't walk like what i was like did he did he sever something like what it was so frightening the anxiety was so excruciating the symptoms were so intense all the time and i just i remember i had to literally it's so embarrassing i don't care but i had it's like i don't i just you know you know me i'll literally say anything but yes i would i had to lift myself up by my arms and push myself onto a computer chair to go to the bathroom because i if i put my feet on the ground my heart rate was 160 and that i'm like i don't want to do a three hour episode now where i feel sick for three hours like i'm going to throw up and dizzy and fainting and all of this so i'm like i would just lift myself up as long as my feet didn't touch the ground wheel myself to the bathroom and i remember there was one time i was in my neck brace looking in the mirror just made it to the bathroom and i just said you know what michelle i just i don't think you're gonna make it out of this and then some other part of me was like you better never say that again because if your nervous system and your limbic system believe that you're not going to heal you truly this is one of the only conditions where it is tangible that you won't heal so you have to find that i don't know that dog and you got to find that dr gabrielle line and you you got to find that shame in you and you have to find a way to believe you can heal and you know I had a very serious conversation with a client the other day who um she's bed bound with symptoms and um she was talking about her health history she was talking about the different co-infections she had and I said I love you so much and I just heard you say I felt good for a couple days but it always happened like that and it's not going to happen again and I said you can't even say that out loud I said your body is listening to you don't even think it don't even say it it's that precious and that important the mindset the resilience piece which you you've changed my life in so many ways in that department too I mean everyone's lives but personally too like you have to find that dog in you I don't know what to say you have to find it well Michelle Shapiro I'm so grateful that you came from is it New Jersey now it's so hurtful I'm Queens New York City okay I I just didn't know if we're calling it a British or New York.

1:19:57Gabrielle Lyon:But you are a wealth of information. And just, again, for those of you guys who don't know Michelle Shapiro, watch for her. She is a superstar. I have been telling her this and telling everybody I know for a really long time. And I believe that you are the person to watch. Thank you. You are the person I watch. And that we all watch. Thank you. I love you so much. You're really good at taking compliments, but that's okay. Michelle Shapiro thank you again for really getting in to the dark and dirty and shedding some light on MCAS, POTS, Ehlers-Danlos you know you've been through a lot and I would say that those individuals are the best providers.

1:20:44Absolutely yeah the word you use is right shedding the light on it because the light the information is the tool here the knowledge is the tool and the resilience is the tool i could talk about antihistamines a low histamine diet but you have to shine the light on yourself and i'm telling anyone who's listening who's dealing with i don't care how far those symptoms are there's always a way back from them i have more hope for this community than i've ever had in my entire life well said well said my friend i love

1:21:15Gabrielle Lyon:you so much. Thank you. Thanks for tuning in to another episode of the Dr. Gabrielle Lyons show. Remember, healing is possible. It's about improving your baseline, regaining function, and cultivating resilience. When equipped with education and the right approach, these conditions don't have to define your life. If today's episode resonated with you, Please share it with someone who needs to hear it. And don't forget to subscribe and leave a review. It helps us reach more people who need answers and hope. Until next time, friends, stay strong, stay informed, and remember, you are in control of your own health.