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

Dr. Gabrielle Lyon: 00:00

If you've ever felt dismissed by medical professionals, or if you've struggled with confusing symptoms like dizziness, racing heart or fatigue without clear answers, this conversation is for

Michelle Shapiro: 00:12

you. Histamine is one of 1200 plus chemical messengers that come out of mast cells.

Dr. Gabrielle Lyon: 00:18

In this episode of the Dr. Gabrielle Lyon show, I interview Michelle Shapiro, registered dietitian

Michelle Shapiro: 00:24

clients who eat tomatoes and citrus fruits and fermented foods. If you went to a gut health doctor, these would be the healthiest foods on the list. They would say you have to eat these foods, and they would be the exact foods that would sicken those with histamine issues.

Dr. Gabrielle Lyon: 00:39

We're tackling a widely misunderstood and ill defined health issue, histamine and its related conditions like mast cell activation syndrome, postural orthostatic tachycardia or pots. And she shares her personal and professional journey navigating these challenging conditions.

Michelle Shapiro: 00:59

It's impossible to believe that something that's healthy for someone can create severe symptoms. It's not logical, almost, right? Why would someone drinking lemon water make them violently ill for a week? It almost, it's like defies our understanding of the human body, almost, because it acts in this very odd way. Basically,

Dr. Gabrielle Lyon: 01:15

we'll explore why traditional medicine often misses the mark on diagnosing and treating them, and discuss how these conditions intersect. We break down practical strategies to reclaim your health, calm your nervous system and build resilience. Michelle Shapiro, registered dietitian, also one of my dearest friends. Welcome to the show.

Michelle Shapiro: 01:39

I'm already emotional. Thank you so much for having me. This is so happy to be here. It's unbelievable.

Dr. Gabrielle Lyon: 01:44

One of the reasons why I wanted to have you on is typically, when we see a patient in the practice that has all these strange symptoms, like dizziness, heart rate variability, they are reacting to foods, to sun, to things that we couldn't even imagine. It seems as if Mast Cell Activation Syndrome is something that plays a role and it being related to nutrition, you certainly are an expert, and have seen many patients with Mast Cell Activation Syndrome. But what is it?

Michelle Shapiro: 02:23

Yeah, so we'll first define what mast cells are. I think that's really important. So much of the conversation online right now is about histamines, so we're going to use that word a lot, but I think to even define histamines, we have to talk about where they come from. Mast cells are part of our immune system. They're a type of white blood cell, and I really think of them as being the guards to our body. So what their job is is to assess for threat and then send messengers out to the rest of our body, instructing them on what do we do in this situation? And I really think of mast cells as being this. Not only they not only help with the healing in times of a threat, but they are always anticipating threats as well. So what happens is something will attach to the outside of a mast cell, and then the inside there's these sacks where they will release these granules that have these chemical messengers in them. One of them is histamine. So this is why this histamine conversation becomes so important. Mast cell activation syndrome is when those mast cells are constantly activated and releasing these chemical messengers. And it's really important to state histamine is one of 1200 plus chemical messengers that come out of mast cells. So

Dr. Gabrielle Lyon: 03:27

Wow. And we really have kind of honed in on histamines, just out of curiosity. Why do you think that is?

Michelle Shapiro: 03:34

I think histamines create the most emergency like symptoms, and I think that's why we focus so much on them, because histamines are the most, I guess, the loudest you could say of a lot of them, there's elastases, triptases, cytokines, there's so many different compounds that come out of our mast cells, but the ones that we can actually see and feel come from histamines, usually.

Dr. Gabrielle Lyon: 03:54

For anyone who's interested in research, I wanted to pull some of the new, existing data, and this is a 2024, paper. It's the World Journal of Clinical Pediatrics, and it's Mast Cell Activation: Up to Date Review of the Literature. And again, it talks about mast cells as this, again, what you had said, a type of white blood cell that is involved in the immune system, and they create a common list of symptoms. Flushing, hypotension, itchiness, swollen tongue, headache, vomiting, diarrhea, and it seems as if there's a lot of outstanding questions, I'd love for you to talk about a little bit about what these symptoms are? Is it system dependent? And how is that going to happen?

Dr. Gabrielle Lyon: 04:44

I can't believe how excited I am to talk about this. I'm like, This is so great. Thank you for asking me that question. So when we think of histamines, we often think of medications like antihistamines. So we think of these as a Benadryl deficiency, right? It's like, you just need a Zyrtec, right? Which, in some cases, by the way, you do need a Zyrtec and we can talk about the medication component of it, but histamines are so much more than just these compounds that cause mucus and coughing and this type of classic cold symptomology. So mast cells are in our connective tissue and our connective tissue lines every organ in our body, our joints, our bones, really anywhere where there they say there's a dark, hollow space in your body. There are mast cells. So that means that the symptoms from histamines can come from anywhere in your body. So it's really weird, because if people can get tachycardia or low or high blood pressure from histamines, they would actually think maybe I'll go to a cardiologist. But in reality, because the symptoms are coming from this type of chemical compound, it's really hard to trace kind of their place of origin. And other symptoms that people experience with histamine, issues are flushing and those classic allergy symptoms that we think of cold symptoms. But then also, people can experience extreme urgency in their digestive system, extreme urgency in their urinary tract, feeling like their bladder is constantly full and irritated, feeling extreme anxiety, because one of the roles of histamine is to keep us awake and alert. So people have insomnia, anxiety that's really prevalent, depression or depressive symptoms, because we can't say there's only one root cause of any of these conditions or syndromes. Histamine issues can cause joint pain, and our perception of pain can be increased from them as well. And then a lot just again, a lot of digestive issues. People are seeing rapid diarrhea, also constipation, which is weird, it depends on the person, and a lot of nervous system involvement too.

Dr. Gabrielle Lyon: 06:39

And that's really tricky, because it's almost a catch all phrase you're not feeling well. It could be Mast Cell Activation Syndrome, which is not common. I think that this is a case. When I say it's not common, it's not very common in the literature. It's also not common from a diagnosis perspective, and it reminds me of when mold and environmental toxins were never thought of. I remember when I was living in New York City. I mean, we've known each other, now, it's gonna be almost a decade. It'll be going on decade. And when I was living in New York City, crying, I know, so sweet before both babies and before Shane, literally, before Shane. Aren't you so glad we don't have to listen to buds class 234, like we were on repeat last night.

Michelle Shapiro: 07:30

At 10pm.

Dr. Gabrielle Lyon: 07:30

I know the when I was living in New York City, I got really sick living in my apartment, I went to multiple doctors, and I had already been a physician, right? So I'd been a physician seeing patients. And it turned out I went to probably five different doctors, and I didn't get any answers. I couldn't explain word finding difficulties, vision changes and just terrible fatigue. I mean, I could barely get out of bed, and it ended up being mold. I was exposed to Stachybotrys in the apartment that I was living in. But at the time, people would think that was crazy. Now, everybody is talking about mold. It's really become more of a prevalent disease, just just like Lyme, absolutely mast cell activation, I think, is the next thing.

Michelle Shapiro: 08:22

Yeah, and mold, by the way, can be a very like clear root cause to mast cell activation syndrome. By the way, because of this inflammatory cascade that happens as a result. Because anything that triggers your immune system to be in that constant state of threat or activation, or needing to detox all the time, anything like that if you don't have proper drainage, can create this immune system? Need to constantly put out these messengers and constantly fight

Dr. Gabrielle Lyon: 08:49

That is very interesting, because it gives us a root-cause approach, and that is something that you really focus a lot on. How does someone know what would be the process of trying to figure out if someone had Mast Cell Activation Syndrome. And I'm thinking of one patient I have, and he would go into his house and immediately he would get a histamine reaction.

Michelle Shapiro: 09:10

Yeah. So first of all, you can have that histamine reaction to these environmental toxicants. So when I think of we'll talk about the diagnostic piece, but also when I think of this histamine problem, usually it's a composite of different different factors. So histamine issues are not just from one thing. So it's not that you ate a tomato and then you were sick after I think of histamines much like we think of autoimmunity, kind of like a bucket theory. So you could have a little bit of environmental toxicant that puts your immune system on guard little bit of mold, and then you have a stressful conversation with a family member, and then you eat a bunch of tomatoes, and then you drink a little bit of alcohol. And then that turns into...

Dr. Gabrielle Lyon: 09:11

Then you watch 234,

Michelle Shapiro: 09:20

And then you watch Navy SEAL documentaries at 9pm which is way past my bedtime with the children. Yeah, exactly, but it's a composite of these things that then puts your body into this state of activation. So it really is not just usually one event. However, I will say a lot of times, if there is one event, it is usually from a very strong detox protocol. So I often see clients coming to me after they've been to functional medicine doctors on these incredible parasite cleanses, mold detoxes, they're correct, but their immune system is too reactive, basically.

Dr. Gabrielle Lyon: 10:24

And what I'm hearing you say is you're describing what people would probably pin on a Herx reaction.

Michelle Shapiro: 10:31

That is exactly right. And so usually, if you're working with a fabulous functional medicine doctor, they'll titrate down, or they'll say, we kind of have to push through right? We have to push through this. Herx. The problem is, with histamine issues is you have a new problem. If you have, if you have Mast Cell Activation Syndrome, while you're going through a mold detox, you now have to deal with the Mast Cell Activation Syndrome, because your immune system, in that state of constant searching and fighting is going to create new problems for you.

Dr. Gabrielle Lyon: 10:59

That just sounds really challenging, yeah. When someone is thinking, Okay, I might have mast cell activation, how would they then go through kind of a diagnosis criteria? Or is there a criteria for diagnosis?

Michelle Shapiro: 11:15

Sure, yeah. So this can be done in an immunologist office. This can be done in a primary care office, a functional medicine doctor's office, so you can measure the actual mediators. You can measure serum tryptase, serum histamine in your actual like at a lab, with a lab test. You can also measure through a urine test. The reason why these can be very limiting is because histamines aren't don't live in our blood for very long, and if you're not in an active flare, you might not be able to see what is circulating, basically. And so it's really important that, if people are using that mode of diagnosis, that they actually go during a flare. I would say it's really important. And you have to be off of antihistamines to be tested for it a kind of more accurate measurement. And another way that we can diagnose, not myself, but that doctors can diagnose, is through biopsy. So you can get a skin biopsy, or if you happen to be going in for an endoscopy or colonoscopy, you can, you can biopsy the cells and see mast cell activity through that as well.

Dr. Gabrielle Lyon: 12:10

The standard laboratory diagnostic markers of MCAS, according to this up to date review for MCAS, is serum tryptase with a normal level defined between zero and 11.4 nanograms per milliliter in adults, it also exactly what you said. Studies have shown that the sample should be taken within one to four hours of the beginning of symptoms, and that that basal level should be evaluated in advance during a symptom free period, at least 24 to 48 hours after complete recovery. As one could imagine, this is not easy to do, and some studies suggest that even a normal tryptase level that that does not diagnostically rule out MCAS. You had mentioned, and I'll just this is for the providers listening, and if you are someone who's testing in your urine or urinary metabolites that other mediators such as histamine, prostaglandins, leukotrienes, other urinary metabolites of histamines, it says that they are not as well known in terms of diagnostic criteria. What else would be a way to tell? Is this a diagnosis of exclusion?

Michelle Shapiro: 13:26

It can be. And while, of course, as a dietitian, I'm not diagnosing anything, I will say this. I tell the story about a mutual friend of ours, Olivia Amitrano, who you introduced us. That's right, I'm responsible for the friendship. You are very responsible, and I'm giving full accountability and responsibility. I responsibility. Olivier wrote an article a long time about what her number one travel tips were and what she has to pack with her when she's traveling. And in that article, she said, I always bring Benadryl with me, because you never know when you'll need it. And I said you'll only need Benadryl if you have a histamine issue. So that's a good way to know if you take Claritin, or you took a Zyrtec, or you took a Pepcid and you felt immeasurably better, that would tell you, you know what? Maybe this is, this is something. And maybe this is a direction to look in, because for people who do not have histamine issues, you would not feel better taking those medications. So sometimes there's a little bit of a trial and error as well. I would also say that after working with probably at this point in my practice, 1000 clients, between myself and my practitioners, there's very clear patterns that we can see when it comes to histamine issues. So clients who eat tomatoes and citrus fruits and fermented foods, if you went to a gut health doctor, these would be the healthiest foods on the list. They would say you have to eat these foods, and they would be the exact foods that would sicken those with histamine issues. So when I see clients come in with a list, and I say, what foods do you react to? And they say, vinegar, tomatoes, spinach, avocado, that leads me in a direction of, okay, this is not a regular gut issue, like leaky gut or something. They're not reacting to fiber particles. They're reacting to one specific component of the food so it is a little bit of by exclusion and also by pattern recognition, I would say. And there are some really easy patterns to see.

Dr. Gabrielle Lyon: 15:11

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Dr. Gabrielle Lyon: 16:22

What that made me think about that list. It also made me think about Small Intestinal Bacteria Overgrowth.

Michelle Shapiro: 16:27

Yes

Dr. Gabrielle Lyon: 16:28

Which is exactly what it sounds like. Small Intestinal Bacteria Overgrowth, there is a disproportionate amount of bacteria that would be less than ideal for the gut, people get a lot of bloating when you see a patient with histamine. Do we call it histamine intolerance? How do we differentiate between histamine intolerance and mast cell activation syndrome?

Michelle Shapiro: 16:53

Yeah, so mast cell activation syndrome will probably involve those other mediators. Histamine intolerance can be you have actually a normal amount of histamine circulating, you just don't feel well when you're having that amount. So it's an intolerance to existing histamine that you're experiencing. Pretty hard diagnostically to differentiate. However, if someone has histamine intolerance, I'm always wondering if there's mast cell involvement as well, and there is mast cell involvement, because that's where histamine is released from would

Dr. Gabrielle Lyon: 17:21

it be safe to say that if somebody has a histamine reaction repeatedly, that they should be checked for mast cell activation syndrome? Absolutely. Is there a list of symptoms, a validated list of symptoms that they would say, Okay, you go to your cardiologist because they see tachycardia or POTS, which I'd love for you to talk a little bit about. Is there a checklist to determine, because I haven't seen one.

Michelle Shapiro: 17:53

I've never seen a validated checklist, although, again, I think immunologists probably have access to something that's pretty again, this clear pattern recognition, it is not there would not be a diagnosis based on that list that I'm aware of. I could be wrong, by the way, and I'm open to.

Dr. Gabrielle Lyon: 18:10

No, no, I haven't seen it. But you for example, in low testosterone, there are questionnaires for sleep apnea, there are questionnaires for narcolepsy, for all of these, many of challenges, physical challenges, there seems to be a questionnaire. And this would make sense that guys, if no one has done this, someone go do it. Go get on this right away, because it would be really, really helpful.

Michelle Shapiro: 18:40

Yes. So this, this part of the conversation, I think, is the most important part, because the philosophical question we have is, whose responsibility is it to treat MCAS, and what can each person do? What is the role of each provider? What's the scope? Because this information around MCAS is exploding very recently, the first practice paper, I believe, was only in 2017 maybe 2019 so it's all very new. And we've also seen an explosion of MCAS with Long COVID. So the question is, where's each of our roles, I think. And it's really, really important, because if someone, again, if someone has a pounding heart, when they stand up and their heart rate's jumping up, severe tachycardia, which is a frightening experience. You think you're having a heart attack. You don't know what's going on. You're so dizzy, you can't move. People can't walk when that reaction is happening, where would you go? Gabrielle, you'd go to your the ER, you go to a cardiologist office. But there's no cardiologist who's pulling out a list of histamine intolerance checklist when someone's coming in. They're going to do an EKG, they're going to do what they need to do. What they need to do to make sure that their heart, as a muscle, is functioning. The issue is that histamines, one of their main functions, is to cause vasodilation, which we'll go into more deeply. But it's not that the heart itself is not functioning. It's that the brain is signaling and the mast cells, the immune system, is signaling for the body to operate in a different way. So it's really challenging for doctors, because that's not in their inclination, and it shouldn't be. They want to make sure that muscle is working, that the organ is working. So it's really challenging when clients go to the ER because you can get any emergency sign you can think of respiratory rate changes, fevers, obviously, any visible signs and things like that heart rate. So the question is, what is each of our role? I think, because it's really tricky and it really conceals itself as other conditions as well.

Dr. Gabrielle Lyon: 20:33

What would the diet look like? Is it fair to say that there is a diet to help modify these symptoms in the short term, and then I'm curious as to treatments in the long term.

Michelle Shapiro: 20:50

Absolutely. Yeah, so let's say someone, let's say we have identified a root cause for MCAS. Let's say we know someone's living in a moldy home. Let's say actually someone has SIBO. Because SIBO is actually one of the syndromes or conditions that we say travels with MCAS, so they often have overlapping like symptomology as well. So if someone has these symptoms in the short term, or we've even identified the root cause, you still have to treat the symptoms first. This is very different than other conditions, because if you know that mold is an issue. Usually you treat the mold, right? If you know that parasites are an issue, you treat parasites because histamines are so react, our immune cells, our mast cells, are so reactive to any type of detoxification, including a vitamin C supplement. I had a one week reaction with fevers because I got a vitamin C IV.

Dr. Gabrielle Lyon: 21:40

Wow. This i This really brings me back to remember my New York practice, of course, we had a patient that reacted to vitamin C. This was before I was even thinking about Mast Cell Activation Syndrome. And we're thinking to ourselves, how we don't believe this. We do not believe that she is reacting to vitamin C. Tell me more.

Michelle Shapiro: 22:00

Yeah. So it's really funny, because those patients are my only clients, so that's I only see the people who have those reactions, and those reactions have exploded since COVID, by the way. So it's impossible to believe that something that's healthy for someone can create severe symptoms. It's not logical, almost, right? Why would someone drinking lemon water make them violently ill for a week. It almost, it's like, defies our understanding of the human body, almost, because it acts in this very odd way, basically. So Vitamin C is powerfully supportive for our immune system. In Mast Cell Activation Syndrome, your immune system is not hypoactive, and it's not autoimmune. It's hyperactive, so it's constantly turned on, essentially. So anything that enhances an immune response can also enhance a mast cell response as well. The other issue is, if you are not draining or detoxing properly, you can have recirculation of toxins.

Dr. Gabrielle Lyon: 22:53

What does that mean? Does that mean liver removal? Yes. Does that mean going to the?

Michelle Shapiro: 22:58

Gut removal, liver removal. So any, if any step in the detox and drainage process is inhibited, you can have recirculation of toxins, basically. So in SIBO is a great example, you have this bacterial overgrowth, and your body is like, let me mount an immune response to help you to get rid of this and to move this through. But you don't you, you cannot handle the added immune and detoxification response. So it is a body that is in a state of turned on too much. So anything that enhances the detox response that could help you, you actually can't do which is really, really frustrating in treatment.

Dr. Gabrielle Lyon: 23:33

That would be really, again, very challenging. Here. I'm just going to read this. This is the relationship between SIBO and MCAS is as follows, SIBO and this is for my science nerds in there. Dad, I hope you're listening. SIBO causes the activation of the mast cells and increase in T lymphocytes. T lymphocytes, in turn secrete micro particles that again activate mast cells. Activated mast cells and T lymphocytes release cytokines. This increases intestinal permeability and leads to this vicious cycle. Friends. Why this is so important is because when you hear mast cell activation or when you hear SIBO, you must have a mechanism of action. When we don't have mechanism of action, and the way that I would think about this is, red meat causes cancer, colon cancer or red meat causes cancer. What is the mechanism of action? This has a clear mechanism of action. How do we begin treatment? Because obviously people would think, Oh, well, I'm gonna take vitamin C. I'm not feeling well. But before, actually, before we go to treatment, give me some other items that people would take. You said, vinegar, avocado, any of the foods that seem to exacerbate Small Intestinal Bacteria Overgrowth. I did a a episode with Ken Brown. Dr. Ken Brown. It's amazing. If you guys want to learn more about SIBO, we should link to that episode here. Vitamin C.

Dr. Gabrielle Lyon: 25:05

What else? Yeah, so from a histamine food perspective, and the original question, yeah, absolutely. The original question you had was like, what is the diet? The deal with the diet, piece of it, and we will talk about that, of course. So the foods that are high in histamines, or can cause the body to release histamines are vinegar, citrus fruits, spinach, avocado, tomatoes, especially like aged foods. Unfortunately, pickles, for me, it's a major loss. It's actually the only high histamine food I can't eat. Chocolate. Everyone's mad at me for saying that one, alcohol, anything that's aged the the the food itself can build histamines over time, basically because histidine gets converted to histamine in the aging process. Fermented foods, those gut healthy foods, miso, natto, fermented vegetables like these foods that again, are so objectively healthy, they have a high histamine content, or they cause the body to release histamines. Bananas are another one, spinach.

Dr. Gabrielle Lyon: 26:03

So would these reactions happen immediately? Depends. It's a great question, yeah. 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 Matt, my producer chugging vinegar, he maybe could do it, and then all of a sudden he can't do it anymore.

Michelle Shapiro: 26:20

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. So 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 body, 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. It 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.

Dr. Gabrielle Lyon: 27:37

That was my that was gonna 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?

Michelle Shapiro: 27:47

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. So 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 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. And 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 to activate, and they literally communicate with each other. Mast cells are also considered neurotransmitters and are released by our hypothalamus as well.

Dr. Gabrielle Lyon: 29:09

With histamine stabilization and nervous system stabilization. Can you give me a sample type protocol? And we've actually worked on a few, 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, Long COVID, ACE receptors and this MCAS connection. We started her on Pepcid, we gave her a handful of items, and it seemed to really improve her symptoms. So let's start with that.

Michelle Shapiro: 29:44

Yeah, and I'm gonna actually mention a case study with a different client, and why Pepcid even came up to me, and why I even started thinking about Pepcid. I had a client who was on eight psychiatric medications. Actually, has she had a fantastic psychiatrist? And it was well 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.

Dr. Gabrielle Lyon: 30:12

In my emails to stay up to date, I always get these medical lectures. 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. If 75% of Americans are deficient, that means three out of four of you listening to this podcast may be deficient, and that's where mellow magnesium comes in. It's a daily super blend that contains the three most bioavailable and nutrient dense forms of chelated magnesium and not to mention over 70 trace minerals full transparency. Ned shares all of its third party lab reports. So you know that the product that you are ingesting it has what it says it has. So if you are someone like one of the 75% of Americans who are magnesium deficient, go to Helloned.com that's H, E, L, L O, N E, D.com/DRLYON and they have amazing, amazing small travel packs of this magnesium, mellow magnesium, you will love it.

Michelle Shapiro: 31:45

And 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. They studied 16 people out of who were inpatient in 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 LongCOVID symptoms? Why would that make a difference? And it's actually because Pepcid is an antihistamine, which most people don't know. And 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 Pepcid, 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 is sleep. She has not said the word sleep to me in five years. So weird. Yeah.

Dr. Gabrielle Lyon: 32:57

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 Pepcid 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 it is that we are using?

Michelle Shapiro: 33:23

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 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 such a severe reaction to environmental triggers, or having going out to dinner with friends and having something that's super healthy and ending up again violently ill. So in the beginning, I will often, even as a dietitian, recommend over the counter medications, a combination of h1 receptor medications like Claritin, Allegra or Zyrtec, and then probably a combination of Pepcid as well. The question that's going to come up in your amazing medical community is, well, Pepcid, lower 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. This 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.

Dr. Gabrielle Lyon: 33:24

When you focus on their diet. Is it mostly proteins? What kind of foods do you typically have them eat?

Michelle Shapiro: 34:59

Yeah, fresh protein, because leftover foods can also, again, the older a food is, 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 and raspberries, unfortunately, and strawberries, 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. So we will go on at probably an eight 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 the time, and very possible.

Dr. Gabrielle Lyon: 36:31

so eight to 12 weeks on a low histamine diet, Whole Foods taking some form of A, typically an h2 blocker and h1 a combination of H1 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?

Michelle Shapiro: 37:05

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 mast cells, I have this visual for mast cells, I 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 research 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, and 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 promo and sodium ketotyphon. 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, but we have to find a way to feel safe again.

Dr. Gabrielle Lyon: 39:29

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 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.

Michelle Shapiro: 40:02

I'm bursting at the seams to talk about this. Yes, go burst, don't so one, one thing, one of the functions of histamines is to cause vasodilation, okay, the widening of our blood vessels. And this is, you have such an intelligent audience, they're gonna be like, Michelle, please don't explain vasodilation to me, you know. 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. So 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. So in a histamine response, again, what you can see 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 cause of migraines can be histamine issues because of this vasodilative feature, which is, I think, one of the roles of histamine that creates the most havoc in the body. Symptom wise,

Dr. Gabrielle Lyon: 42:16

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 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?

Michelle Shapiro: 42:42

It's the it's the exact right question. So this scenario is very common in people with this syndrome, Postural Orthostatic Tachycardia Syndrome.

Dr. Gabrielle Lyon: 42:51

Which we did not really yes into, and I'd love for you to talk about that.

Michelle Shapiro: 42:54

Yeah, that'll take us into that, because this is one way where those two are very related. And I have a joke about pots. The way that we treat pots in conventional medicine is we kind of create a go Gurt tube through your body. So we compress your stomach. We wear an abdominal binder. You squeeze it. It helps the blood flow go up. We 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. It'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 your again, your heart will start pounding faster. We often think of POTS. We're like, why are people's part hearts pounding so much they get put on Propranolol, Metoprolol, 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. So we drink LMNT right, LMNT, that's one gram of sodium. We're talking about 10 LMNT packets. And again, it's to enhance vasoconstriction 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 hyper-adrenaline 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 four. Nature of Mast Cell Activation Syndrome, enhancing that vasodilation, causing leakier blood vessels. POTS and MCAS are connected right there, and it's really important. And then Idiopathic POTS, which is there's actually some sort of blood vessel damage that's causing it.

Dr. Gabrielle Lyon: 45:15

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. Could be prostaglandins, it could be leukotrienes. It could be

Michelle Shapiro: 45:56

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, 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, and 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.

Dr. Gabrielle Lyon: 46:38

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Michelle Shapiro: 47:53

But you said something, Gabrielle, it's going to be Dr Gabrielle line 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. I have never seen a POTS 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, you have to have a tremendous amount of electrolytes, and you have to hydrate really, really well. That

Dr. Gabrielle Lyon: 48:25

brings us to exercise. How does that happen? How can we manage exercise dealing with pots or MCAS? And I've had patients with pots who probably have MCAS, but the major presenting symptom is this

Michelle Shapiro: 48:43

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. You can't people feel like they can't see. It's excruciatingly anxiety inducing and the anxiety around pots, especially hyper adrenergic 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

Dr. Gabrielle Lyon: 49:11

your skin and you're at it. Oh, don't know your personal story. You have had absolutely POTS, MCAS, MCAS

Michelle Shapiro: 49:19

Hypermobility and long COVID.

Dr. Gabrielle Lyon: 49:20

Which, 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.

Michelle Shapiro: 49:30

Heck yes, yeah. 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. You have told us this information yourself, for 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. We you know, I've had so many clients, Gabrielle, where they're at the point where they can't walk 10 steps. So what do you have

Dr. Gabrielle Lyon: 49:58

to do? What do they do when they walk? 10 Steps, they just feel out of breath, or, yeah,

Michelle Shapiro: 50:02

so so dizzy that they might actually faint some that pots there's a huge fainting component to many. Not every single person has that symptom. 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. And it's actually with mast altivation 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 an 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. 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. And then also the really mindful of neck as well.

Dr. Gabrielle Lyon: 51:49

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.

Michelle Shapiro: 52:03

So 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.

Dr. Gabrielle Lyon: 52:13

I it would make sense, because, again, we share a few patients together, and when those patients do a lot of walking with weights, they they feel terrible, and it's 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. How fast do you think? And again, I understand that this is individual. How fast do you think someone could titrate up movement?

Michelle Shapiro: 52:54

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.

Dr. Gabrielle Lyon: 53:02

What about the hypermobility part you had mentioned earlier that there is connective tissue, potentially bone joint involvement in this? Talk to me about that.

Michelle Shapiro: 53:20

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. Hypermobility, as I'm talking about it, is probably a collection of conditions that are connective tissue disorders called Ehlers Danlos Syndrome, eds, I have H-EDS, Hypermobile Ehlers Danlos Syndrome. Ehlers Danlos Syndrome.

Dr. Gabrielle Lyon: 53:44

Wait, did you just say you have,

Michelle Shapiro: 53:45

yeah, I sure do. I exactly.

Dr. Gabrielle Lyon: 53:47

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?

Michelle Shapiro: 53:59

Yes, absolutely. So I had moved to, I'm 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. I mean, there was mold, it was, it was such a good apartment.

Dr. Gabrielle Lyon: 54:21

Otherwise it was very hard. You did not want to leave. How long were you there? I was there for two years.

Michelle Shapiro: 54:25

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 interseller, like he was coughing up a lung. 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. I was like, Oh, now I know it's mold related. So I went on a mold detox in that apartment. Was like, the sickest I ever was in my life. And I just, I. Mean, Herc 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 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. I could not stand up without my heart rate going up to 160. I mean, 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? I it took me a long time to understand how mass saltivation 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.

Dr. Gabrielle Lyon: 56:12

Wait, it was this one 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?

Michelle Shapiro: 56:24

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, I, we can show people the video. I was like, this is like, so tell me about Forever Strong. I was like, we didn't use, we did not end up using that.

Dr. Gabrielle Lyon: 57:45

Yeah, did a great job, 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.

Michelle Shapiro: 58:02

So it the amount of women who are hypermobile but don't, you can be hypermobile and just have, basically, like, just different joints in your body are hypermobile, but not have Ehlers 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.

Dr. Gabrielle Lyon: 58:35

And shout out to Taylor Goldberg, you know, you've got Michele Shapiro, I said, Michelle, do you want to come train with us this morning? She goes, Ah, morning? She goes, Ah, no, I am gonna stay at the hotel gym and I'm gonna lift my 15 pounds.

Michelle Shapiro: 58:48

Yah and Taylor tells me what to do. She's one of the only people I let bully me besides you.

Dr. Gabrielle Lyon: 58:48

Taylor, you're fired. Okay, well, I guess

Michelle Shapiro: 58:48

You also threatened me and said to go in the ice plunge. I'm like, you gotta give me a break. Oh,

Dr. Gabrielle Lyon: 59:00

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 infrared. So I wanna wait to talk about Yes. How can someone assess for Ehlers Danlos and what is the relationship between Ehlers Danlos and the association with MCAS.

Michelle Shapiro: 59:23

The biggest challenge is, well, are you having a hyper mobile symptom day? 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 re establish it and to structurally hold you together. It is the only like is the most important thing we can do.

Michelle Shapiro: 59:23

yes, 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 COL5A1. 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 of. Pregnancy. It's a very it's a profoundly important thing that we, anyone who has Ehlers Danlos Syndrome, gets an echocardiogram, not an EKG, an echocardiogram, because you have to make sure that there's not going to be, you know, even like a rupture of those blood vessels. So just understanding how important our connective tissue is, there's assessments that you can be done, and also genetic diagnostic features for EDS as well. So if our mast 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, and then you have this kind of cluster of what we call the triad, which is symptoms from any direction.

Dr. Gabrielle Lyon: 59:47

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Dr. Gabrielle Lyon: 1:03:39

What I'm hearing you say is that muscle is the organ of longevity, the most important structure in our body.

Michelle Shapiro: 1:03:47

I really have to say 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.

Dr. Gabrielle Lyon: 1:04:03

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. Yeah, if someone injures their connective tissue in some kind of sporting injury, would that cause a cascade of mast cell activation?

Michelle Shapiro: 1:04:33

100%, 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

Dr. Gabrielle Lyon: 1:04:58

The sauna and cold plunge. I, I've been trying to get you to do that. I use those all the time, the mast cell activation. Obviously, there's different phenotypes, for lack of a better word, whether you are mast cell activation with small intestinal bacteria overgrowth, whether you have pots and mast cell activation or you have Ehlers, danlos and mast activation. Are there adjunct therapies that are more beneficial for one group than the other? Yeah, absolutely.

Michelle Shapiro: 1:05:31

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 do we get to 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.

Dr. Gabrielle Lyon: 1:06:04

It was rucks and yeah.

Michelle Shapiro: 1:06:07

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. It just takes more time you have to stabilize first. So infrared is tremendously supportive from a detoxification perspective, from a nervous system perspective, innumerable ways that Dr. Alexis Cowan 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 can trigger these, these symptoms,

Dr. Gabrielle Lyon: 1:07:00

Okay, I cannot validate some of these items on here, but I want to talk about them, okay, 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? Okay.

Michelle Shapiro: 1:07:30

yes. 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, six 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, just feel really weird every day seven of your cycle, like, no, 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.

Dr. Gabrielle Lyon: 1:09:08

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 it's 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.

Michelle Shapiro: 1:09:39

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, so 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 away to reduce the symptomology, to have them tolerate the medication that's essential for them.

Dr. Gabrielle Lyon: 1:10:14

Do you find similar symptoms? For example, someone who is using an estrogen patch and the subsequent histamine release.

Michelle Shapiro: 1:10:23

Yes, I do. 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 I 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.

Dr. Gabrielle Lyon: 1:10:54

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?

Michelle Shapiro: 1:11:10

So it can be that you just have this hyper activation, 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 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 think about using it.

Dr. Gabrielle Lyon: 1:11:41

Baking soda for acid reflux. Yeah, exactly. It's like the it's like, totally flipped, exactly. But, and we will say, it tastes disgusting. It's horrible.

Michelle Shapiro: 1:11:50

It's salty. It's not like salty in a fun LMNT way. It's like a salty in a

Dr. Gabrielle Lyon: 1:11:54

bad way, like armpits or something. Yeah, it's bad. Not that I taste armpits, but, but

Michelle Shapiro: 1:11:58

I will say, and there's also tri-salts, 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, 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.

Dr. Gabrielle Lyon: 1:12:22

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?

Michelle Shapiro: 1:12:31

For hist? for MCAS specifically? Yeah, I think resveratrol is incredible. Quercetin, Perilla extract, pea. So I think most people with histamine issues have a major Omega three issue, but most do not tolerate fish oil. Still too reactive.

Dr. Gabrielle Lyon: 1:12:49

They take it and then they might get itchy, or whatever their histamine reaction is.

Michelle Shapiro: 1:12:53

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. 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 really 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.

Dr. Gabrielle Lyon: 1:13:37

That it I mean, 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?

Michelle Shapiro: 1:13:50

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 on an airplane to come down here. Woohoo. 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 Lyon, exactly, but absolutely. And the I think the language around all this is that you can never these are Mast Cell Activation Syndrome and POTS or 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 care to them absolutely 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.

Dr. Gabrielle Lyon: 1:14:55

I couldn't agree more. 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 they're corny or something. I know something like that, but there is something in the inherent belief of a person who gets better, you're right, versus a patient who doesn't.

Michelle Shapiro: 1:15:17

This is the what makes these conditions so unique is that they are nervous system related disorders, 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, 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 gonna 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 raise. I held on. Basically any movement was triggering my heart rate to go up really high.

Dr. Gabrielle Lyon: 1:16:10

Is that what someone with POTS would experience?

Michelle Shapiro: 1:16:12

Yes, so with POTS and Upper Cervical instability combined. Basically. How

Dr. Gabrielle Lyon: 1:16:17

long did it take you to get diagnosed? So with

Michelle Shapiro: 1:16:22

I ran a genetic test for hypermobile Ehlers, Danlos Syndrome and soy self. You can do, yeah, that you can order them yourself online. But I had, I had an ND and MD review them.

Dr. Gabrielle Lyon: 1:16:31

So POTS, but I'm, well, I guess what I'm getting at is that's very forward thinking, right?

Michelle Shapiro: 1:16:36

I had to figure a lot of it out myself. It's hard. It's true. So MCAS, my serum, histamine serum tastes were exceptionally high. So that the and that was 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 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 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. And you went to the cardiologist. 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 ran the genetic testing and had it reviewed by an ND 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 Reddit. 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 I would 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 gonna 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 in you. You got to find that Dr Gabrielle line in you. You got to find that Shane 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 she's bed bound with symptoms, and 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 happens 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's that you have to find it well.

Dr. Gabrielle Lyon: 1:19:43

Michelle Shapiro, I'm so grateful that you came from. Is it New Jersey? Now, it's so hurtful. Queens, New York City. Okay, I just didn't know if we're calling it. We're not here in New York, 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.

Michelle Shapiro: 1:20:15

Thank you. You. You are the person I want and that we all watch. Thank you.

Dr. Gabrielle Lyon: 1:20:20

I love 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, absolutely.

Michelle Shapiro: 1:20:44

Yeah, the word you used 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 anti histamines, 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.

Dr. Gabrielle Lyon: 1:21:13

Well said, well said, my friend. I love you so much. Thank you. Thanks for tuning in to another episode of the Dr. Gabrielle Lyon 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.