Ehlers-Danlos, POTS and Mast Cell Activation Syndrome: They Travel Together

Show Notes

Ehlers-Danlos syndrome, POTS and mast cell activation syndrome show up in the same patient far more often than chance would explain. That person usually spends years being bounced between specialists.

Dr. Sasha Rose and Colin Renaud, PA-C are direct about why: these conditions span multiple systems at once, so they do not fall neatly into cardiology, rheumatology or allergy. Patients get dismissed, see specialist after specialist, and leave each one with a partial answer. Meanwhile they are hypermobile, dizzy, reactive, foggy and exhausted.

They walk through what each condition actually is, why connective tissue explains more than joints, how POTS fits under dysautonomia, the role histamine plays, why histamine intolerance is really a gut health problem, what antihistamines do and do not address, and the mobility testing that actually helps.

For educational purposes only. Not personal medical advice.

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Welcome to the MedMatrix Method podcast. We are here to talk about everything functional medicine, and today's episode is called the EDS, POTS, and MCAS Connection, Bendy, Dizzy, and Dismissed. And we've been looking forward to talking about this because as I mentioned earlier, it's something we all see all the time. Patients who have hypermobility, dizziness, chronic fatigue, gut issues, allergic reactions, brain fog, pain, or symptoms that have just been treated separately without anyone stepping back to connect the pattern. So today's gonna be a provider discussion between myself and my esteemed colleague who's here, Dr. Sasha Rose. I'll let her introduce herself in a second. Today, we're gonna break down what patients should understand about EDS, POTS, and MCAS, and why these conditions are often misunderstood, what a thoughtful evaluation of these conditions should include, and how the functional medicine lens can support the whole body without turning every symptom into a one-size-fits-all label. So here's how today's episode is gonna work. Dr. Rose and I are gonna start with our discussion. And as we go, if you're listening to us live on any of our streaming platforms, if you have any questions, please drop them in the comments. If you have a question, it's very likely that someone else also has the same question, so no question is a stupid question. Please ask your questions. And after our discussion, we'll answer your questions during our live Q&A at the end of the episode. And just a quick reminder for those listening, before we get started, this episode and all of the episodes of the MedMatrix Method podcast are for educational purposes only. This is not meant to be personal medical advice, and it should not replace care from your own medical provider. If you are experiencing fainting, chest pain, trouble breathing, severe allergic-type reactions, anaphylaxis symptoms, unexplained weight loss, or rapidly worsening symptoms, you should seek medical care as appropriate and work with your medical team. If you are interested in receiving personalized guidance from one of our providers, myself or Dr. Rose, or one of our other esteemed colleagues, you can go to our website, www.MedMatrixUSA.com to book a free discovery call and start the process of becoming a patient. All right, let's get started, Dr. Rose. Before we jump in, let's do a quick introduction for those listening or for those joining us for the first time. Who are you? What do you do? Tell us about you. Go. All right. I'm Dr. Sasha Rose. I am a naturopathic doctor. I'm a licensed acupuncturist. I'm one of the lead providers here at MedMatrix. I've been practicing functional medicine for just about 21 years, and I sit on the Forbes Health Advisory Board. I'm a published author, and like you, Colin, I see a lot of people, patients, who just say that this topic would apply to them, and I think it's really not that well understood, and again, this is kind of the second time we've done this podcast. This is like a new iteration of it, and I just think it's one of the most important topics that we can pick for these webinars. Yeah, I agree. How about you? Tell us about you. For those who don't know me or are listening for the first time, I am also one of the lead clinicians at MedMatrix. I'm Colin Renard. I have a pretty unique background in alternative medicine and natural medicine. I am fellowship trained in anti-aging and functional medicine. I have a master's degree in nutrition. I do a lot of nutrition work with patients. I specialize in hormone replacement therapy, gut health, and also complex chronic illness such as MCAS, POTS, EDS. I have lectured on MCAS on a national level at national conferences to practitioners and providers. I have been treating MCAS for many years and have worked with some of the top MCAS providers in the world, so this is a really near and dear to my heart concept and topic, and between the two of us, I think we have seen a lot of this in our careers. So again, I'm really, really happy to have this conversation. So I think the best way to get started for those that are listening is what the heck are we talking about? So in your clinical wisdom, Dr. Rose, if you don't wanna define all three, I'll define one or two if you want, but start with one. Give us a definition of one of these things. What is it that we're talking about? Yep, so people often hear the term EDS, not really sure what that means. So EDS stands for Ehlers-Danlos Syndrome, and it is a condition concerning connective tissue and joint stability. We're gonna get into this a little bit later, but it is one diagnosis in the larger umbrella term of hypermobility syndrome. You wanna take it, take POTS? Sure, yeah. So POTS stands for Postural Orthostatic Tachycardia Syndrome for, that's the long form. POTS is a medical condition affecting the autonomic nervous system. So what that basically means is the nervous system that you cannot control. Your autonomic nervous system is like your heart rate, your digestion, your blood pressure, things that you have really no conscious control over. And POTS can affect spiking of your heart rate significantly. It can really be related a lot to cardiovascular issues, dizziness. People with POTS can experience broad changes in their blood pressure or their pulse. They might be sitting down and they start having racing of the heart, like they didn't change their position. So this is a really, really difficult condition that patients manage because it can be very, very unpredictable. And that's really the biggest issue with some of these conditions that we're talking about is really the unpredictability. And then the final one that we're talking about, MCAS, is Mast Cell Activation Syndrome. And basically this is a condition where the immune cells or mast cells, M-A-S-T, have released too many inflammatory chemicals. And this can cause repeated, often severe allergic type symptoms, inflammatory symptoms. And also there's something called aberrant growth and development that can happen in MCAS, basically where people can have overgrowth of certain things, tumors or different type of cystic formation in the body. A lot of common symptoms of MCAS include flushing, hives, cramps, diarrhea, trouble breathing. And people can be often triggered by benign everyday things like food, stress, smells, chemicals. So a lot of complexity here. And I think it's important that we talk about, before we move on, sort of like how they all fit together. So what, Dr. Rose, do you see with your patients in terms of like, how do these things, why are we talking about these things together? Like the three together? Yep, yep. So, well, I think we're talking about them all together. I'll just speak, and when I say they, I mean Ehlers-Danlos Syndrome or Hypermobility Syndrome along with POTS, which is one form of dysautonomia. And then MCAS, I mean, more often than not, I will see somebody who has at least two of these together clinically. And so it's oftentimes somebody might come to me and they know or they suspect that they have POTS, but they've never heard of Mass Cell Activation Syndrome. And then once you go through my questioning, it's pretty clear that they probably do have, you know, some dysregulation in that area as well. Or maybe they've always been hypermobile, but they never really put together that the chronic pain might be actually either EDS or another hypermobility condition. And so just from a pure clinical perspective, I feel like they often are part of this, you know, they come together and therefore they need to be in the same discussion. So it doesn't mean that every person that has EDS has POTS. It doesn't mean that every person that has MCAS has EDS, but, and I know that you do this too, like in terms of our questioning, I feel like I'm being not totally doing my job if I don't go through that kind of that basic questionnaire to just to see like how many systems of the body are being affected. And once we do start to make those connections, I think that's when a lot of these symptoms and signs that somebody has been living with their whole life, it can suddenly kind of, they can at least start to come together. Like that puzzle can kind of start, the pieces can start to line up. And honestly, that can be kind of validating for a lot of our patients. Yeah. How about you? How would you answer that question? Yeah, I think that was a, it's a great, great way you answered that. I think the best thing for patients and anyone listening to understand is that these syndromes are spectrum disorders. So what that means is they lie on a spectrum of severity. I have had MCAS patients that are medically disabled, can't leave the house, eat two foods, can't tolerate sunlight. I mean, I've seen really severe. And then I've seen mast cell patients that their symptoms are managed with antihistamines and they live a normal life and things are fine. So the best thing to understand about this is, as you said, this is an umbrella of an issue where there's multiple things sitting under it. And often if there's signs or symptoms of one of these conditions, like an MCAS, where people are getting the allergies, the inflammatory symptoms, there might be hints of something else. Hyperflexibility, hypermobility, dysautonomia, or problems with the autonomic nervous system. So they do all kind of coincide together. And I think that's really important for patients to understand. And I think that's where most patients struggling with MCAS or some sort of POTS EDS type syndrome are struggling because as you mentioned, these symptoms can be all over the place, all over the body, from skin to gut to orthopedic to neurological to cardiac. I mean, the list goes on and on. And then for women, a lot of symptoms can happen around their menstrual periods and genital urinary symptoms. So one of the biggest issues is that from a healthcare system perspective, when somebody has a myriad of symptoms going on, they might be referred to 50 different doctors. It's like, I have 50 different symptoms, so I have to go to each doctor for that specific symptom. And that's where sometimes people get a little lost. So that brings me to my next question that I want to dive into is a lot of my patients are exploring and understanding MCAS and the relationship between MCAS, POTS, and EDS as it might relate to them through the internet and social media. They're being dismissed by their doctors. They're seeing multiple specialists because they're not getting answers because their symptoms are all over the body and all over the place. How do you feel that the advent of social media and the internet has helped put some of these pieces together for patients? Yeah, one thing I do need to say is that I think it's because of our poor internet that I am, I think just on my end, I'm losing some of your audio. I'm hoping that our viewers and our listeners are not having the same experience, but I'm following you as best that I can, but I am missing chunks. So just a little disclaimer to everybody, if I have to ask you to repeat something, that's why. It's not because I'm not paying attention. It's because it's a little, it's a little disjointed in terms of the audio. Oh, technology. Did you hear my question, Dr. Rose? It's a really good question that you asked, which is really, which I'm pretty sure was about the role of social media and the internet in terms of like validating and explaining these conditions, the EDS, POTS, and MCAS connection. And I think that where social media has kind of actually played a really positive role for a lot of people is that they have come from feeling dismissed. And as you said, they've, because these conditions span multi, you know, many systems, it doesn't really fall into, like you said, cardiology, neurology, orthopedics. And so people often feel they're passed around. It's just not, none of these conditions are well understood and by most providers. And so people, patients, unfortunately, will often get misdiagnosed, dismissed, et cetera. And then what they often will find is they'll find community on social media. And that, again, is really validating. They're connecting with people who have like lived experience that reflects their own or is similar to their own. And that in itself is therapeutic. And so I love it for that. I love that people can kind of become educated in one way or another for better or for worse, but they can get some information in when they're not currently, they haven't been able to get it from their medical providers. So unfortunately, I think sometimes, and this is just the internet and maybe human nature a little bit, but sometimes it gets distilled down into this checklist. And like, people are like, oh, I have to have all of these or I don't have it. Or they're dizzy on occasion. And then there's kind of, again, this, and again, I think this is human nature to basically self-diagnose and say, well, that, it might be POTS because I will get dizzy sometimes. And it's not that simple, but I think there just can be that tendency because you want an answer. And there's also not one treatment. There's not one supplement that's gonna help everybody. So I think that kind of that simplification of what are very nuanced and complicated conditions, I think that's what's maybe the negative in terms of the internet. What do you have to add to that? That was great, by the way. That was a great, and I can hear you just fine. And we're getting comments from our listeners that they can hear you. So can you hear me now, as they say, as that old commercial? Okay. It's more that I can't hear you. Okay, but you can sort of hear me. I can kind of get the gist, yes. You're doing great. Okay. We'll get through it. So, no, you said something very, very important that I think is really a really beneficial thing to talk about is the validation part. So one of the biggest, biggest things I've seen, and I'll speak for you, Dr. Rose, too, I know you feel the same way, is when we see patients with complex chronic illness, when we see mass lactivation syndrome, when we see POTS, EDS, it's that validation of sitting in front of a provider, a doctor, whoever you are, and saying to the patient, I understand what you're going through. I've seen this. I work with patients like you. We might not have an answer as to what to do, because these conditions are complicated to treat, to be blunt, but to just give that validation to a patient and say, I understand you, I see you, versus being gaslit by the medical system, I think it's very healing for patients. It's a really healing part of their journey. So I think it is so important to validate symptoms, and I think it's so important for patients just to be validated without jumping into something too quickly. As you said, not everybody has POTS, not everybody has EDS, not everybody has MCAS, so seeing someone that has a lot of experience and is really clinically trained to look at these patterns is so important, and that's why we're having this discussion, and the validation is really, really important. So I wanna get into the specific symptoms of what we're talking about so people can understand this a little bit better. So from your perspective, Dr. Rose, when we talk about the term hypermobility, what does that actually mean? Is it just being flexible? Is it more than that? How do you define this for our listeners? Yeah, I think hypermobility as more than just being flexible. What we see is we will see a history of frequent sprains, kind of general joint instability. It's not just one joint, just in general, just joint instability, subluxations, definitely chronic pain, I see that one a lot. Again, injured easily, proprioception, kind of your balance being a little bit off, definitely like connective tissue-wise, maybe a little stretchy, you're just feeling kind of fragile, sometimes headaches, sometimes pelvic floor issues, fatigue, and then just this overall body is hard to stabilize. My husband's a physical therapist with people who have hypermobility, and they just, according to him, they just don't respond to the same manual therapy that somebody without hypermobility responds to. It's like they, and I think you can tell me if this is right or not, but I think from a chiropractic perspective too, it's like there may be an adjustment or some kind of therapy, but the body kind of doesn't, it kind of goes back, right? It kind of goes back to the default because of this laxity almost in the connective tissue. Has that been your experience? Yeah, and one thing I think is in, this kind of connects how we're looking at this is I have had many a patient with hypermobility syndromes, whether it's properly EDS or just some sort of hypermobility where when they're inflammatory, when the inflammation is bad in a patient, right? They feel very inflamed, they feel very reactive, the symptoms are triggered. Their hypermobility is worse, essentially, and when the inflammation gets better, they're not as hypermobile. Can you repeat that? Can you repeat that? Yes. Can you repeat that one for me? Can you just repeat that? Yes, I can. Can you just repeat the inflammation and the piece that you just said about inflammation? When inflammation is better, the hypermobility is less. Did you get that? Okay. Yes. I think so, yes. As long as our listeners got it, I think I know what you're saying. Okay. So one thing that I use sometimes, and Dr. Rose, your husband might know what this is, is something called a Bighton score. B-E-I-G-H-T-O-N. It's basically a nine-point medical screening tool to use to measure hypermobility, and this is part of the diagnostic criteria of hypermobility, and we actually use these on physical exam to understand hypermobility syndrome. So there's a lot of ways to assess this medically, and sometimes it goes back to symptoms, but I think you hit the nail on the head. And one thing I wanna talk about next is sort of this dysautonomia thing we're talking about when we're talking about the autonomic nervous system being sort of out of whack, if you will. So to reiterate, the autonomic nervous system, for those listening, is part of your nervous system that you do not control, your heart rate, your blood pressure, your digestion. So dysautonomia is really a general term for the autonomic nervous system misfiring. It's just not working right. So a lot of common symptoms of dysautonomia can be dizziness, lightheadedness, especially if you stand up too fast. You can get tachycardia, which is heart rate is too high, or heart palpitations, your blood pressure can change. It can be too high, too low. Extreme tiredness or trouble exercising or exercise intolerance. Digestive issues like nausea, slow stomach emptying, and then also trouble with your body temperature where you can't regulate it, it goes up and down on its own. You might sweat kind of inappropriately. You might be too cold when it's hot or vice versa. So that's kind of part of this whole triad piece. And then I also want to talk specifically about MCAS or mass activation syndrome. So for you, Dr. Rose, I hope you can still hear me. For those listening live, we are having internet connections in our home studio where Dr. Rose is located. So she is having trouble hearing me, but I think she's transmitting well to our audience, so just bear with us. In your clinical opinion, Dr. Rose, how would you categorize some of the most common symptoms of MCAS? Is it always just allergies or what else are you seeing with MCAS? Great. I actually understood that question, which is a great start. So I think oftentimes, if people have heard of mass cell activation syndrome, they often will think that it's like, that you're kind of sneezing all the time or you're congested all the time. And yes, it can definitely include kind of the respiratory system, the sinuses, but we also see, well, like this is again, what I see clinically often is a tendency to flush, maybe even to get hives, just a general itchiness. Like the skin just has this kind of like tendency to itch. And that often is connected to heat, like a heat intolerance or an exertion intolerance where running or taking a hot shower, that kind of thing will trigger hives, itching, flushing, et cetera. General swelling, and this isn't just kind of like edema or swelling of the ankles. It's just kind of like a swelling in a lot of parts of the body. Sometimes again, that respiratory stuff, the wheezing, the throat tightness. And then this one I think is maybe the lesser understood of aspect of mass cell activation syndrome, which is the GI, the gut stuff, right? So maybe there's a tendency towards nausea. There's a tendency towards some cramping, diarrhea, just kind of like your gut stuff has been off for a while. And then sometimes a change in blood pressure. So low blood pressure, again, that kind of faintness, and this is where it kind of potentially bleeds into the POTS or the dysautonomia piece of things. And again, as we keep on saying, is that these are oftentimes reactions that span multiple body systems. And so it's not just the respiratory system. It's not just the digestive system. And that's where it can kind of be confusing, confusing for the patient, confusing for the provider, confusing to diagnose. But that's, you know, I guess the question being specific to kind of allergic type symptoms, those are the ones that I see. Does that line track with what you see clinically? Yeah, no, totally. And it's, like you said, all over the body, different body systems, very much, you know, the skin to the gut, to the reproductive system, women with periods, all kinds of things. And I want to make something clear for those that are listening. Mast cell activation syndrome is not mastocytosis. So mastocytosis and MCAS are both mast cell disorders, but they're very distinct. So mastocytosis involves an abnormal buildup of too many mast cells in the body, while MCAS features a normal number of mast cells that are inappropriately overreacting. So basically, mastocytosis is like an overproliferation of the mast cell tissue, and this is often linked to a specific genetic mutation. There's different types of ways that mastocytosis is manifested. There's cutaneous issues, there's systemic issues. So this is much different. This is almost like a cancer of the mast cell, versus, you know, where it's overproliferating, versus the MCAS, as you have a normal number of mast cells, they're just hyperactive. So I want to make that distinction very clear for those people listening. So one really important thing I want us to talk about as we move on to how these connections are playing a role is, you said this very, very eloquently before, is people appear normal. You know, you see your doctor, you see your specialists. I've had patients with upwards of 50 specialists before they came to me to get an MCAS diagnosis. And, you know, they're all told, you look normal. Well, your labs are normal. You know, basic labs are just not capturing the joint instability, the orthostatic heart changes, the mast cell mediator, inflammatory chemical release. Normal labs are not capturing the gut issues, the gastroparesis or the gut motility issues. You can't really capture food reactions or chemical sensitivities, or a reaction to a smell or a perfume on a lab. You know, you can't capture, you know, you can't capture symptoms triggered by postural change on a lab or temperature change. I think that's really important that people understand because that's what we hear all the time is I've seen every specialist there is, they're all telling me I'm normal. What the heck? Why am I being told I'm normal? Why are my labs normal? Do you have anything to add to that, Dr. Rose? Just that it can really add to the frustration, right? Like it's- It is the frustration. It is, you know, I mean, it's, you know, people really don't feel well in a lot of different ways and yet the basic labs really are normal. Like nobody's lying to you. They are normal, but it's not, as you said very well, it's not really capturing the underlying issues. Yeah, yeah. Yep. One really important point I wanna make as we move on on this very important topic is the nervous system. And the immune system is really what we're talking about. Mass cells are part of your immune system. They're one of your white blood cells. And then the nervous system is also playing a role with this dysautonomia, right? That's part of your nervous system. You know, the autonomics are merging. So how do you, Dr. Rose, connect all of these systems? You know, the connective tissue part, the nervous system, the immune reactivity, how do these go together? Like logically explaining it to like a fifth grader. So not making this super medical, but how do you explain this clinically? Right, so fundamentally, like how can connective tissue, the nervous system and immune reactivity all affect each other, which is really, again, I think part of what I find fascinating about these kind of three syndromes in there, and they're kind of like the Venn diagram of these three. A lot of different ways, I guess, is the simple answer. The longer answer is that connective tissue does affect stability and blood vessel support. Dysautonomia, which as we've said, is that dysregulation of that autonomic part of the nervous system. So if you have dysregulation in that, that's gonna affect your heart rate, circulation, digestion, temperature, temperature regulation, and then energy for sure. And then with mast cell activation, it definitely affects the immune system and importantly, inflammatory signaling. And so these are all, they all overlap, they all connect with each other. It doesn't, it's not like linear in my experience or my understanding. It's not that one, you know, A causes B and B causes C. It's just that there's kind of like some dysregulation oftentimes in all of these connective tissue, nervous system, immune reactivity, and they're all gonna kind of play off of each other. And I think that because of this overlap, that's why just having one label isn't gonna automatically explain everything, which is again, what, partly what makes this conversation so hard, I think, is because it's complex. It doesn't affect everybody the same way. And why it warrants this deeper discussion. Yeah, yeah. I think that's so well said, so well said. I wanna talk, before we dive into sort of how we address these issues from like a functional medicine approach, I wanna quickly just talk about some of the most common root causes of these things. So we can kind of put some, we can kind of look at this together, the three things, you know, MCAS, POTS, and EDS. They all are individual. They all are unique. But I wanna kind of broadly discuss some of the root causes that I've seen, and I wanna hear your thoughts too, Dr. Rose. So from a root cause perspective, sometimes we have no idea. And I'm just gonna be very blunt about that. The human body is extremely complicated. It's extremely complex. Whatever you believe in, whoever made us, right, a god or whatever, wherever we came from, we are extremely complex, extremely complicated. When I am assessing patients from a mast cell perspective, one of my, I have two goals. Short-term goals, the short-term and the long-term. The short-term is how can we help you feel better now? And then the long-term is where the heck did this come from? And is there things that we can do to address that so we can really treat you from a long-term longevity perspective? So I've seen patients with MCAS where this is genetic. They have members of their family. They all look and smell the same. It's like, okay, you all have MCAS. Makes sense, like, this is probably genetic. I've seen MCAS in patients with Lyme disease and tick-borne illness. I've seen MCAS and POTS and EDS in patients that have mold illness or mycotoxin illness where they've had exposure to mold and other types of toxins or chemicals. I've seen other more basic things. Nutritional deficiencies, blood sugar instability, gut dysfunction. We should do our beautifully esteemed colleague, Leah, make a note for a future podcast of histamine intolerance and the gut and gut dysfunction. That's a great podcast episode. People with MCAS and these syndromes often struggle with histamine intolerance. Histamine is an inflammatory chemical that comes from food and other substances. There's a lot of gut dysfunction that can happen from ingesting histamine. Stress is a big one that can drive these syndromes. Trauma, huge, huge dysregulation or huge dysregulator of the nervous system and the immune system. I've had a lot of patients, especially women, and I'm not saying that to be sexist, it just is. I find that most of my patients with MCAS, POTS, and EDS are women, the fair majority. Some women have struggled with rape, abuse, domestic partner abuse, childhood trauma, some sort of interpersonal relation trauma, and that can trigger the immune system and the nervous system to be really, really dysfunctional. And then environmental things, whether it's, like I talked about earlier, a mold, a chemical issue, someone living in black mold for years, or their workplace had mold. So those are some common things I see. What are your thoughts, Dr. Rose? What do you see? Have I missed something? Yeah, no, I think you said it really well. I think one thing just for me clinically, like I have treated digestive health conditions for years and years as a bit of a subspecialty, and hundreds of patients with SIBO, which is small intestine bacterial overgrowth, and as I know you have as well, and sometimes even small intestine fungal overgrowth. And the vast majority of patients do get better with kind of some of our standard protocols from a functional medicine perspective, but there are those patients that just don't respond the way that most do. And of that kind of smaller percentage of patients, I think a lot of those, there is that MCAS, that histamine instability and sensitivity that's kind of playing a role, and it often gets missed. I think even among people who are kind of treating SIBO and looking at gut health at it from a deeper level, there's not always that recognition of the MCAS piece that can sometimes play a role. So I think that's just an important clinical note. Yeah, yeah, we need to do an episode on histamine intolerance and gut health, and it's so linked. And really, histamine intolerance is a gut health problem. That's where it starts, right? That's what I've seen. Yeah, yeah. So to kind of bring this back to us as functional medicine clinicians, how do we as functional medicine providers evaluate these types of patients? What is it that we're doing differently? How do we see this differently in your perspective from a functional medicine approach? Yeah, I want to answer that, and then I do want to say one other thing before I get to that, which is just while we're still on kind of this overall symptom pattern of people that maybe have some degree of hypermobility, dysautonomia, certainly the mast cell piece, and I'm just thinking about this one patient that I saw today who does have definitely POTS, and I think some of the mast cell piece too, and she's just a really good example of what you and I see every day with patients like this, which is like a hypersensitivity. And that doesn't just mean to histamine, it's really to medications and supplements, and just like environment in general, right? So yes, it's like the odors, the fragrances in a store, and even socially kind of being overstimulated, but in terms of important information for the prescribers and the providers of those patients, you do not, in my opinion, you do not start with the normal dosages that you might with somebody without MCAS, hypermobility, et cetera. Like they just, it's going to back, it's more often than not, it's going to backfire. And so having that awareness about somebody and about somebody's kind of reactivity, I think can clinically make such a difference to just start with one or two things, you don't throw a lot of things at them, and you start with very, very small percentages of the normal starting dose. Again, whether we're talking about a supplement, whether we're talking about a medication, a hormone, and so intense detoxes, or too many supplements, or just kind of too many changes, and it can just overload the system. And I just feel like I want patients to know that so they can advocate for themselves. And I think if there is anybody out there listening who is a provider or a prescriber, I think it's just really important. Yeah, that's a great point. I'm glad you brought that up. And this is a great place where our compounding pharmacies are our best friends. I've made very good connections with the pharmacists at compounding pharmacies, because it's like, okay, I have a patient that can't tolerate a certain medication because it has a dye in it, right? All the medications now, they're pink or they're blue, or it's like, that doesn't need to be in there. Or they can't tolerate the capsule, or they can't tolerate the filler, so we have to compound it special so it's just the medication and none of these other fillers. So great, great point to make. Yeah, I think that's super important. So do you- Circling back to your original question, which I interrupted both of us. No, it's fine. So I think you were asking about kind of when somebody's coming here, how is our evaluation really kind of looking at maybe the real pattern or the real picture, and how is that different than what somebody might find on the internet or how they might kind of self-diagnose on the internet? And I think it's a lot. It includes really a detailed symptom timeline, the date and score, which I think you mentioned earlier, hypermobility screening, orthostatic vitals, maybe table testing when appropriate, cardiac evaluation if it's appropriate, the allergy immunology evaluation, if MCAS is suspected, GI evaluation, nutrient labs, inflammatory markers, thyroid markers. And I think what's maybe hopefully evident in all that is that your functional medicine provider might not do or be able to do all of those things, but they should be able to know when to refer, in my opinion, right? Yeah, I think it's a good point, because I'm gonna say this in a nice way. You could be a great functional medicine clinician. You may know diddly crap about MCAS. So if you are struggling with something in the midst of what we're talking about, you need to find a clinician. They might not even be a functional medicine practitioner. They might be a mast cell specialist, right? They might be a naturopath or an MD or even like a chiropractor or something, but they have knowledge of mast cell activation syndrome or these syndromes that we're talking about. So I would argue that allergy immunology does a very poor job of identifying MCAS. I would also say that gastroenterology, the GI doctors do a poor evaluation of identifying MCAS. So when you're looking for someone to evaluate you, you really need it to be someone that understands the syndromes, and they could be the best functional medicine whatever ever, but they might not know anything about what this is. So the nuances, as we're talking about, right, the nuances in understanding how to prescribe medication, how to evaluate, how to treat, how to come up with a treatment plan, how to diagnostically look at this from a whole system perspective, you really need somebody that understands this. And also on that same topic, I think it's important because you need to rule things out too. You need to understand if there's an autoimmune disease, you need to understand if there's medication issues, if there's thyroid dysfunction, anemia, nutritional deficiencies, some sort of GI disease, or other medical condition that can overlap with these symptoms. Because the really big thing here is most of our patients that struggle with these syndromes are seeing 10, 20 plus specialists, and they're all being ruled out for all the bad stuff, right? You don't have cancer, you don't have this, you don't have that, you don't have this. So it's like, well, what the heck do I do have then? It's like, okay, you probably have this then. If we've ruled out all those bad things, this is where a clinician like you or me comes in and says, okay, we've figured out it's not all these other things, this is what we're working with. So that's what I think is really important. Yeah. Yeah, I think what I know you and I see, or I oftentimes like if somebody does have, say, tachycardia, right? Yeah. And they're often sent first to the cardiologist. And the cardiologist will often say, yep, your heart's fine, you know? And then maybe they're sent to neurology. And maybe someone along that road will maybe come up with POTS, but often not. And because oftentimes it's that rapid heart rate, that tachycardia that is the, for good reason, it's like the thing that really is the most disturbing for somebody. And it does need, you should see a cardiologist. Right, right. But if the heart's fine and everything, there's nothing wrong with the cardiovascular system, then what? And that's, as you pointed out, that's where somebody who really kind of has some experience and training in this, that's important. Yeah, and that's, like, I will use the specialist, right? If I'm suspecting gastroparesis, which is slow intestinal motility, I can't figure that out, right? Go see the GI doctor, have the test done, and then come back to me. If there's a tachycardia or cardiology, go see the cardiologist, have them tell you there's nothing wrong, then come back to me. Go see the immunologist, rule out some of these, and then come back. So it's really about using the specialist to our advantage to rule out all the bad stuff, and then we can start to whittle down the differential diagnosis to say, yes, this makes more and more sense that it's MCAS, it makes more and more sense that it's dysautonomia. And that's part of the plan, right? That's part of how we look at this holistically, and it's how we understand all your symptoms, it's how we understand how to treat you. We have to be medical providers and rule out bad stuff, but we can also appreciate how this is all connected together. So we have tons of questions, Dr. Rose, from our audience. I want to make sure we get through all these, so I'm going to start answering them now so we have plenty of time, because I am so thrilled with all of our response from everybody, and then we can kind of wrap up after that. So thank you guys for checking in from where you're from. This is really exciting. We have people from North Carolina to Maine to New Hampshire to Massachusetts. So I'm just trying to go through the list to find where our questions start. So I'm just going to read one. There's a question in here from Amber. How have you seen historically that symptoms can emerge or become worse around puberty for women? This is a great question. I see this a lot in women. Their mast cell symptoms go crazy when they're pregnant, when they're breastfeeding, when they're menstrual, when they're menopausal. I think what happens here is hormonal shift, because for those listening as well, estrogen is very, very mast cell provoking. The estrogen molecule can be very, very provoking of MCAS symptoms. So I see a lot of dysregulation for women at various times when their hormones might be going a little crazy. Pregnancy, menstrual periods, menopause, all of that. What do you see? Do you have anything to add to that? Yeah, I think it's those fluctuations in estrogen, which again, like we do see during puberty, pregnancy, postpartum, perimenopause, and that can definitely, as you said, it really can kind of trigger those histamine reactions that, or even the, and or the dysautonomia symptoms that were made kind of there, but not terrible, and then all of a sudden they kind of blow up. So, and again, we've talked about how most of our patients with these syndromes are women, and I don't think that's a coincidence. I don't either. I was diagnosed with POTS at age 49 and fibromyalgia at age 39. I'm 50. I didn't have symptoms except for about a dizziness during my teen years, but am hypermobile. Can a person have EDS, but not, we didn't get the rest of the question. So, we're not giving medical advice to this person, but can a person have EDS, but not other things? Yes. This other, this person's also said- Wait, she finished, she finished. Wait, I think she's finished. This person's finishing. Can a person have EDS, but not have symptoms till later in life? Perfect. Yes, definitely. A lot of my patients are older, and a lot of times it's just because things progress over time, and they don't get an answer till they're older. Do you have anything to add to that? Just, again, I mean, it's, you know, I don't know if this is a male or female person, but there's that, you know, there's a lot of things that can happen as we get older, including those hormonal shifts. Yeah, we're, yeah, even, you know, we've talked, we've used the term inflammaging on this episode, so a lot of things can kind of, kind of contribute. So, if, you know, you have a relatively low level of inflammation, and then, you know, as you get older, that creeps up, that can, all these things can be compounded. Yeah. Can you address the idea of chronic pain and day-to-day stiffness getting in the way of performing the mobility tests is a picture of me doing it sufficient. So, again, we're not trying to diagnose anything in anybody, but mobility testing is just a part of a diagnosis of a hypermobility syndrome. We understand that things get in the way. We understand that things change. It's not just a, things are not perfect. I, yeah, I don't know what, do you have anything to add to that? I don't. I mean, I personally don't really do the mobility tests, so I'm kind of relying on other providers for their, you know, their information when it comes back to me. So, I don't, I can't really answer that from a real clinical experience. Yeah, in person, I'll do the bite and score, as we've talked about, but it's diagnosis of these conditions is not just based on one metric. Right, right. If a patient has chronic pelvic SI and low back pain, pelvic floor dysfunction, some hypermobility, but doesn't meet each EDS criteria and symptoms that aren't fully explained by imaging, what would your step-by-step evaluation be to determine whether this is hypermobility syndrome, dysautonomia, POTS, or MCAS? Great question. I think that's like the summation of what we've talked about. I think, again, this isn't necessarily about criteria, because EDS is a very specific genetic diagnosis that needs geneticists, typically, to do the testing. So, when we are looking at hypermobility as a spectrum disorder, MCAS as a spectrum disorder, POTS, we're looking at this from different severities. So, there are certain criteria, quote-unquote, for MCAS, from blood perspective and certain diagnostic tools. You mentioned, Dr. Rose, the tilt table test for POTS, which is often done by cardiology or a neurologist. But a lot of these diagnoses are often based on clinical presentation. Do you have anything to add to that? No, I just think that's a good point, like that spectrum disorder. So, with a lot of these things, it's not like you have it or you don't have it, right? It's like there's degrees of it. Degrees, right. Yeah, and so, I don't know if this is a great analogy or not, but some people will be diagnosed with celiac disease, and that's like a real allergy to gluten, right? There are so many people who have a sensitivity or an intolerance to gluten, but they're gonna have a negative celiac test. Basically, there's a lot to be said, I think, for the clinical assessment with these things, and kind of like this writer says, you might not have EDS, but you can certainly have hypermobility, and you can kind of pass all these tests, but clinically, you really, you do fit the picture. And I think, and again, as we said at the top of the hour, was really like the checklist thing that can be seen on social media and maybe kind of satisfying, but that doesn't necessarily, in the end, kind of help you, right? Like whether you, how many of those boxes are actually checked or not. Right, yeah, totally. So we have quite a few, I just wanna make sure we get through all these, so I'm gonna do these kind of rapid fire. Can you address a bit of the gut manifestations of these conditions? I think we talked a lot about that. A lot of gut conditions I'll see is diarrhea, constipation, bloating, a lot of food sensitivities where patients just cannot tolerate certain foods. And often as the conditions progress, their ability to handle foods gets less and less, more and more reactivity from food. Do you have anything to add to that? Yeah, I mean, you know, this person, it's a good example. Like all the imaging, the colonoscopies, all the endoscopies, everything is normal because a lot of this isn't gonna show up on those, on those scans, right? We're talking about stuff on a cellular level. We're talking about kind of, you know, inflammation that's not necessarily to, you know, these extreme levels. And that's where some of these advanced tests that we use in functional medicine can really kind of come in as, because it will provide data, but it goes a little bit beyond or it should be done in addition to these other screening tests that this individual has already had. Yeah. The question below that, can you touch more on the digestive system? I think we've done that pretty well. And like I said, I think we need to have a whole separate podcast on that. Can you distinguish mastocytosis through a blood test? So as I was talking about earlier, mastocytosis is caused by a, we call it clonal proliferation and accumulation of mast cells and tissues, like the skin, the bone marrow, the GI tract, the liver. So diagnosis is usually made via physical exam, sometimes skin or bone marrow biopsies, and sometimes a baseline elevated tryptase, which is a chemical that's produced by mast cells. So this is really where a very distinguished hematologist, oncologist would be getting involved to understand mastocytosis. Anything to add to that? No, I think you said that very well. And I think it's important to make that distinction. Yeah. Really great question. Does MCAS affect the ability to hold iron and vitamin D? I'm incredibly low on both. This is a whole nother podcast topic that we need to have. Vitamin D is one of the most crucial and important mast cell stabilizers. I would say 90 plus percent of my MCAS patients that I've treated over my 10 plus years of clinical training or clinical experience have vitamin D deficiency. I have seen patients with severe MCAS with vitamin deficiency. We treat the vitamin deficiency, they get 10 times better. Same thing with iron and anemia. Iron and anemia is linked to POTS and dysautonomia significantly. So these are so important. What would you say? Anything to add? No, I think it's crucial. And it's, again, it's often missed. Crucial. And that connection is often missed. And again, we will have a whole nother, at least one other episode on this, but it's also kind of comes back to what's normal versus optimal in terms of levels of vitamin D or even ferritin, which is your storage of iron. So maybe hold that, table that for another time. Table that, yeah. And I love the communication of you guys between each other. You're sharing your ideas. You're sharing your thoughts. This is great. Can you touch on how common it is for women to have PCOS or endometriosis comorbid with EDS in the trifecta? Do you wanna answer that? Yeah, I'm not seeing, where is that? Can somebody pop that up? It's down towards the bottom. Yeah, it's because we're having a lot of conversation. Yep, there we go. Yep, so PCOS, endometriosis, absolutely. I mean, just clinically, like all the time, I would say. And we've talked a lot about inflammation. I did a podcast episode on what's now PMOS, which used to be PCOS. That, as well as endometriosis, inflammation is a huge player in both of those conditions. And clearly after, I hope people can get that it's a huge piece with MCAS as well. So I think they do often, there is that trifecta as this writer put. And it's definitely, in terms of women's health, I think it also needs to be part of the conversation when we're talking about EDS, POTS, and MCAS. Yeah, and then question, if this, if I have POTS and severe gastroparesis and all these symptoms, do you think I would also have MCAS? So again, we're not making any medical advice, but again, if you have signs and symptoms of one, you probably have signs of symptoms of another. You need a very, very experienced clinician to ask those questions. And then the final question, what can I help myself when it comes to my diet? Like I said, I think we have to have a whole nother episode on diet related to these conditions, like MCAS, low histamine, diet, the whole thing, that's a whole, so stay tuned for that. Thank you everybody for your very thoughtful, great interactive questions. This has been great. We're gonna wrap up in just a few minutes. So Dr. Rose, what can someone who feels that what we've been talking about here today with mast cell issues, EDS, POTS, what can MedMatrix do for someone who is struggling with these issues or feels like they've been dismissed by their healthcare providers? So if somebody suspects that they have any of these conditions, EDS, MCAS, POTS, some kind of mixture of the above, and they do feel like they have, again, been misdiagnosed and or dismissed, MedMatrix can really help, and we do this every day, by taking the symptoms seriously. As you mentioned, like allowing the person to actually feel heard, which unfortunately can be rare, but definitely the symptoms are taken seriously, the individual is heard, connecting patterns across these symptoms, systems, which is crucial, evaluating nutrition, sleep, stress, resilience, gut health, medication, supplements, level of hydration, orthostatic symptoms, the inflammatory patterns, hormone levels, and then coming up with a personalized plan. If you've listened to our podcast before, if you haven't, I think it's one of the best things about functional medicine and definitely MedMatrix is that every person leaves with a very personalized plan. So it's not like you or I have this treatment plan, it's like this one document that we hand every person with suspected MCAS, POTS, or EDS, and they all do the same thing and the same doses and at the same timing, it's very personalized. Even if they all have like diagnoses that kind of overlap, it's always gonna be personalized. So, and as we mentioned earlier, like when appropriate, referrals will be part of that treatment plan. What would you like to add to that? I think that was great. I just wanna comment on one of our listeners who's commenting about asking about some of her specific, their symptoms, I'm sorry, I'm not trying to misgender. I don't know if it's a male or female, but asking about their symptoms and if this is specific of EDS. I saw your question, we can't give medical advice on the podcast, so we really appreciate listening, but I'm sorry, we can't answer specific medical advice questions. This is not for that purpose. So I didn't wanna gloss over that. So one big takeaway, I would say, the biggest takeaway for patients or anyone listening who feel like they're just really struggling to connect the dots is, as you said very eloquently, Dr. Rose, your symptoms deserve to be taken seriously. And the goal is not necessarily to collect labels. And I do think that is one thing that happens in patients with complex chronic illnesses. There's just all these labels, all these diagnoses, like one after the other, after the other. And it's like, how do you make sense of it all? So I think it is really important to understand the patterns that we've been talking about, how these are overlapping spectrum disorders. Each person needs careful evaluation. They need a really personalized plan. You need a clinician that understands these things really, really well. And as I said, I will say it, I'm not ashamed to say it, I don't know that functional medicine always helps connect these things. I hope the higher-ups at MedMatrix don't get mad at me for saying that, but you have to have a clinician that understands MCAS. Not all functional medicine providers know what MCAS is. A lot of functional medicine providers specialize in HRT or hormone replacement or gut health or nutrition or some other thing. They might have no idea about MCAS. But luckily for our listeners, you and I, and I know our other providers at MedMatrix, we do have a level of expertise in MCAS. I would say that you and I have been treating this a long time. I have, like I said, I've been treating MCAS for years. I've spoken about it at conferences. So functional medicine plays a role, but broader than that, more importantly, you need an MCAS literate provider, really, at the end of the day. I think that's the real big take-home here. So I wanna thank everybody so much for listening. Your engagement today has been awesome. Thank you so much for your questions. Thank you for interacting with each other. We love to see this. It's so cool to see where everybody comes from and what they're struggling with. And we can really try to understand how to make our podcast better, how to engage with the audience. If you are interested in becoming a patient of MedMatrix, you can go to our website, medmatrixusa.com and book a free screening, a book, a book, a free discovery call. That's really how the process of becoming a patient gets started. You can stream all of our episodes of the MedMatrix Method podcast on Spotify or an Apple podcast. We are here one to two times a week live on YouTube, giving you all health-related topics from a functional medicine lens. And right now, just as a caveat, we are seeing patients in Maine or New Hampshire only. So if that applies to you, please go to our website and book a free discovery call. Thank you so much, Dr. Rose, for your insight, for your knowledge, for your clinical expertise. I am sorry for those listening. We had a little bit of a technical difficulty today with some internet in our home studio, but we got through it, and I hope everybody had a great time. Thank you, Dr. Rose, so much. Thank you, Colin. Thank you all for listening. We will be here together next week. Every Thursday, Dr. Rose and I are here talking all things health and functional medicine. So tune in and we will see you on the next one. Goodbye. Good, goodbye.