When the Body Sounds the Alarm: Dysautonomia, MCAS, COVID, and the Immune Connection

Do you experience a racing heart when you stand up? Crushing fatigue with no diagnosis? Brain fog, dizziness, or a body that just won't cooperate — and doctors who keep telling you it's just anxiety? You might be dealing with dysautonomia, and you're not alone.

In this third episode of our dysautonomia series, Dr. McMinn and Coach Lindsay sit down with Tyler Mathews — nutritionist, dysautonomia and POTS survivor, and creator of DysautonomiaRecovery.com and ChatDys.com — to explain what's really going on beneath the surface.

Tyler breaks down the immune system's role in dysautonomia: how autoantibodies can hijack autonomic receptors, how viral and bacterial infections trigger the condition through molecular mimicry, and why small fiber neuropathy, leaky gut, and mast cell dysfunction create a vicious self-perpetuating cycle. He also explores the overlooked roles of circadian rhythm disruption, histamine intolerance, and sunlight deficiency.

We dig into the Dysautonomia Trifecta — the well-documented overlap between POTS, Mast Cell Activation Syndrome (MCAS), and hypermobile Ehlers-Danlos Syndrome (hEDS) — and how Long COVID has brought this constellation of conditions into sharper focus for both patients and researchers.

Tyler then shares what actually worked in his own recovery: stabilizing mast cells, repairing gut integrity, restoring mitochondrial function, supporting vagal tone, and resetting circadian rhythms. A root-cause roadmap, not just symptom management.

If you're searching for answers about POTS, MCAS, EDS, Long COVID autonomic dysfunction, or chronic fatigue with no clear diagnosis — this episode was made for you.

Recovery isn't just possible. It has a path. There is hope for a brighter future.

Transcript

Dysautonomia Series Sets The Stakes

SPEAKER_02 0:00

Hello, I'm Dr. McMinn and welcome to the Wellness Connection MD Podcast. Imagine waking up every single day with a racing heart, crushing brain fog, anxiety, profound fatigue, chest pain, and dizziness so bad you feel like you're going to pass out. For millions living with dysautonomia, this is their daily reality. It's like their autonomic nervous system that controls all of these symptoms has blown a fuse. But what if the autonomic nervous system isn't the only problem here? What if hyperreactive mast cells and an overactive immune system are fueling a vicious cycle with your nervous system? Today we're taking our dysautonomia series to the next level. We're diving deep into mast cell connection along with long COVID, Elders Daniel syndrome, and the hidden immune nervous system link. Joining us is Tyler Matthews, nutritionist, researcher, and dysautonomia survivor. This episode may completely shift how you think about dysautonomia as well as other chronic diseases. So without further ado, let's get into it.

SPEAKER_00 0:57

Welcome to the Wellness Connection MD Podcast with Dr. McMinn and Coach Lindsay, where we bring you the latest up-to-date evidence-based information on a wide variety of health and wellness topics, along with practical take-home solutions. Dr. McMinn is an integrative functional MD. Lindsay Matthews is a registered nurse and IIN certified health coach. Together, our goal is to help you optimize your health and wellness. See a list of all of our podcasts.com. To stay up to date on the latest topics, be sure to subscribe to our podcast by your favorite podcast player. Discussions continue this podcast for educational purposes only. Diagnose your treatment. And now, on to the show with Dr. McMahon and Coach Lindsay.

Support The Show And Subscribe

SPEAKER_02 1:53

Welcome to Wellness Connection MD. I'm Dr. McMahon, and as always, I'm joined by my wonderful Coach Lindsay. We're here to bring you the evidence-based podcast on all things wellness, where we provide honest, commercial-free, unbiased, up-to-date, and evidence-based information along with practical solutions in order to empower you to overcome your health care challenges and to optimize your wellness in mind, body, and spirit. And to become a great captain of your ship when it comes to your health. We thank you so much for joining us today. Good morning, Coach Lindsay.

SPEAKER_04 2:22

Good morning. Thanks, Dr. Mack. It's always good to be back on the show with you. And before we get going into our podcast today, we need to take care of our typical housekeeping. Our podcast remains commercial free, which is rare in podcasts these days. So, but it does cost us money to produce the podcast. So we would greatly appreciate any contributions that you can make to support the show.

SPEAKER_02 2:44

And making a contribution can actually save you money. Go figure. Here's how.com and the link will be there for you in the bottom of the homepage under Helpful Links. It's quite simple. Just click on the link and they'll guide you through the process. It's a win-win. You get high-quality supplements that you need, and you get a big discount. So you actually save money and we get your support for the show, for which we are very grateful.

SPEAKER_04 3:19

You can also safely make a contribution to the show directly via credit card or PayPal at the Support the Show link, which is also in the show notes.

SPEAKER_02 3:28

And please don't forget to subscribe to the show and please tell your family and friends about us so we can keep it growing. And we thank you so much. And so now on to the show.

SPEAKER_04 3:36

Dr. Mack, this is one of those episodes I've been looking forward to, and am grateful to circle back around to this topic on our podcast because what we were talking about today is something that affects so many people in our community that are struggling and not getting answers.

SPEAKER_02 3:52

Today we're taking our dysautonomia conversation to a whole new level. We've done two previous episodes on this topic that remain popular with our listeners. So if you haven't heard those, we strongly encourage you to circle back around and to listen to those. Today we're going to explore the cutting edge of what's actually driving dysautonomia. We're going to be talking about the immune system, mast cell connection, long COVID, Ellers Danlow syndrome, and a concept that I think is going to fundamentally change the way a lot of people think about their illness.

SPEAKER_04 4:20

And to help us unpack all of it, we are thrilled to welcome back Tyler Matthews. Tyler is a nutritionist and someone who has lived through the absolute nightmare of severe dysautonomia and come out on the other side. He's the creator of Disautonomia Recovery.com, Disautonomia Recovery Academy, and chatdis.com, which is an incredible AI bot and assistant for those living with dysautonomia. And might I add on a personal note, he's also my partner in crime husband and father to my three children. Tyler, welcome back to the show. Glad you're here.

What Dysautonomia Really Is

SPEAKER_01 4:56

Thank you guys so much for having me back. Dr. Mack, Lindsay, I'm so excited to be here. I'm generally, you know, you know, been thinking about this last night, and um, this conversation is just something that is so important for everyone to in the dysautonomia community to understand. It's a growing area in the dysautonomia community. And yeah, I think today's gonna be a lot of fun. Excited to get into it. Well, it's great to have you, Tyler.

SPEAKER_04 5:21

Tyler, for those who might be new to this topic or maybe they missed those first two episodes that we did on dysautonomia, can you start by giving us the medical foundation? What is dysautonomia really?

SPEAKER_01 5:33

Yeah, I'd I'd be happy to. So dysautonomia is an umbrella term. It's not just one single disease. So a good analogy is heart disease, right, Doc? So that's not one disease either. It includes coronary artery disease, heart failure, arrhythmias, valve problems. So same thing here with dysautonomia. It's a family of conditions that all share one common thread, the autonomic nervous system, the ANS. It's not doing its job properly.

SPEAKER_02 6:01

You know, Tyler, I like to think of the ANS as your body's autopilot, it's kind of quietly managing your heart rate, blood pressure, your breathing regulation, digestion, temperature control, bladder and bowel function, and so much more. You never have to think about these things. They just run automatically in the background, 24 hours a day, seven days a week. And when the system malfunctions, the breakdown can happen in very different ways, which is why there are multiple different distinct conditions under the dysautonomia umbrella.

SPEAKER_01 6:28

Yep, that that's exactly right, Dr. McMahon. So under that umbrella, we we see multiple different expressions of autopilot malfunction or autonomic dysfunction. The most common is POTS, so we think postural orthostatic tachycardia syndrome. I experienced this where the heart rate spikes dramatically when you stand up, but you also have neurogenic orthostatic hypotension, where blood pressure drops dangerously when you stand, sometimes causing syncope or fainting. You have multiple system atrophy, which is a progressive neurodegenerative form. And now one of the largest and fastest growing categories, long COVID autonomic dysfunction. And so what they all share is the neighborhood, the autonomic nervous system, not necessarily the specific disease process.

SPEAKER_04 7:15

Tyler, help our listeners understand the ANS a bit more. Why does dysfunction there affect so many body systems simultaneously? Because that's one of the things that makes it really confusing for both patients and doctors.

SPEAKER_01 7:31

Sure, sure. So basically the the ANS is the wiring and the signaling that connects your brain to literally every single organ in your body. It's the communication network. So if the wiring to your gut is sending the wrong signals, your digestion shuts down and you get gastroparesis or small intestinal bacterial overgrowth. If the wiring to your blood vessel is faulty, then they don't constrict when you stand up. The blood pulls in your legs and your heart races your heart has to race to 140 beats per minute, say, um, just to keep oxygen to your brain. If the wiring to your sweat grant sweat glands is disrupted, you can't regulate your temperature. Because the ANS touches everything, the symptoms touch everything. That's why patients look like they have 10 different diseases when really they have one core system failure.

SPEAKER_02 8:25

So what are some of the classic diagnostic criteria for dysotonomia, especially for POTS, uh, since that's the most common one?

SPEAKER_01 8:31

Sure. So for POTS, the classic diagnostic criteria is in in adults, is sustained heart rate increase of 30 beats per minute or more within 10 minutes of standing up from a resting position. So and that's without any significant drop in in blood pressure. Now for adolescents, the threshold I think is a 40 beats per minute. But that's just the the clinical benchmark. The reality of the disease is much broader and much more complex than just a single number.

SPEAKER_04 8:57

So review for us some of the classic symptoms that patients actually experience day to day, because the heart rate number alone doesn't really capture all of that.

SPEAKER_01 9:06

Oh yeah, that's right. The hallmark is orthostatic intolerance, meaning you feel terrible when you stand up, dizziness, lightheadedness, palpitations, uh, heart racing, etc. But it goes so much deeper than that. Profound crushing fatigue that doesn't improve with sleep, brain fog so severe that it's hard to string sentences together, shortness of breath, chest pain, severe gastrointestinal issues, bloating, nausea, constipation, or diarrhea, temperature dysregulation where you you're freezing when everyone else is warm or sweating profusely for no reason, and severe anxiety, which is actually a physiological response to the adrenaline your body is dumping to try and actually keep your blood pressure up. It's not psych a psychiatric condition.

SPEAKER_02 9:51

And you know, Tyler, I remember back in the old days uh when Lindsay would come into work and I'd say, How's Tyler? And she would describe your symptoms. Boy, it was just straight from that uh that chapter. You know, you I remember you had the crushing chest pain, thought you were having a heart attack, and you know, severe anxiety and uh all those things.

SPEAKER_01 10:06

That's right, Dr. I asked Lynz to grab my chart from your from your from your office so that I could see what to put in here. And that was all of them. Yeah, yeah, yeah.

Why Symptoms Span The Body

SPEAKER_04 10:15

Yeah, all those symptoms. But they're all the also it's kind of like a spectrum type thing too. So some people listening to this, you might not have all of those things, or you might not have the severity of what we're describing. People can land anywhere on the spectrum with those descriptions. Yeah. Why does it take so long for people to get diagnosed? I mean, often years, while in the meantime, sometimes they're dismissed along the way as just being anxious or malingering or lazy or even like hypochondriacs.

SPEAKER_01 10:47

Yeah, uh exactly. I think I think it takes so long because modern medicine is highly compartmentalized. Uh, you you go to a cardiologist for your heart racing, you go to a gastroenterologist for your stomach pain, a neurologist for your dizziness, a psychiatrist for your anxiety, and you know, really none of them are talking to each other, and none of them are really looking at the whole picture. Aaron Powell We're we're all in our silos. That's it, yeah. That's exactly right. That's exactly right. And and and and and because the the standard labs, your your CBC, your metabolic panel, your EKG, often come back completely normal, the default assumption is that it must be psychosomatic, that the doctor doesn't have a diagnosis to put in the box, so they just put anxiety in the box and move on.

SPEAKER_02 11:30

You know, uh Todd, I can attest to the fact that doctors get very little, if any, training in dysautonomia in medical school or residency, and uh quite frankly, I don't recall it ever being mentioned. So the average doctor doesn't know much about it and has never seen it, does not have a high index of suspicion about it, and is usually not able to connect the dots to make an accurate diagnosis. Like in your case, you saw some really excellent doctors, and dysautonomia was sitting right in front of them, and multiple doctors didn't even recognize, much less know how to treat it. That's exactly right. Yeah, absolutely.

SPEAKER_04 12:02

From your experience, Tyler, personally, and then from talking to the many people who've been on a dysautonomia journey as well, tell us about the mental health toll and the emotional burden of living with this invisible, very symptomatic chronic illness situation where you can't get out of bed in the morning and you think you're going to die, all while being dismissed un and unintentionally almost gaslighted by your medical providers to whom you've turned to for help.

SPEAKER_01 12:31

Yeah, Lynn, I Yeah, it's there's a lot there. It's as you know, walking alongside this with me, it's it's soul crushing. That's I think the only word for it. The physical suffering is very is agonizing. But the phys the psychological trauma of of medical gaslighting is is often worse. You're sitting in a doctor's office, your heart's pounding out of your chest, you can barely stand, and a person in a white coat looks at you in the eyes and says, it's just stress, you need to relax, or maybe try an antidepressant. You start to doubt your own sanity, really. You you sit in your car after these appointments and cry, not from the physical pain per se, but from the profound invalidation of being told that the nightmare you're living isn't real. Yeah, you you sometimes you lose your career, your social life, sometimes your relationships because you look fine on the outside, but on the inside your body's in a state of constant physiological panic. And that's why the first thing I tell people in in the Dysautonomia Recovery Academy is I see you, I believe you, and you're not crazy. What you're experiencing is real. It's a biological consequence of a system failure, and it's not just in your head. I do want to say I don't want to discredit the doctors I have seen in the past that have unintentionally caused the gaslighting. Yeah, I recognize, as you said, Dr. Mack, that the medical system simply has not equipped our physicians well in this area. It is getting better, but that the system's approach of going to this doctor for this and that doctor for that, the pressures of the financial strain and the speed of which our physicians are expected to see each patient and then go straight to the next one within 10 minutes has led, I think, to hear, as you as you talk about, the symptom pill approach here at on this podcast. And so yeah, I think it's this it's this very approach that keeps people in the chronic disease as well as hopelessness for for recovery.

SPEAKER_02 14:24

Tyler, years ago I had kind of a mold illness situation where I was pretty sick. Maybe not as sick as you were, but uh I remember I always used to wish I had like a broken arm so I could show people the x-rays. That's exactly right. And I had a cast on my arm. Uh but you know, people I think uh would, you know, would say, Yeah, there's nothing wrong with you. Or uh and and it was really frustrating. And I wish I had some kind of uh because your labs were normal and and all this kind of stuff.

SPEAKER_04 14:48

Your friends and family are like, you look great. And you're like, I don't feel great.

Missed Diagnoses And Medical Gaslighting

SPEAKER_02 14:53

Why can't you come to the to the get together? I'm sorry, I just I can't today. Aaron Ross Powell So you know, Tyler, uh that that just means that validation that you described that you offer in your academy is so incredibly important. And now, as previously stated, we have already done uh two podcasts on dysautonomia, so we're not going to just repeat what we already said. If you're interested in getting more about the basics of dysautonomia, then we refer you back to those two previous podcasts. However, there's a lot of really new, interesting, and exciting stuff coming out having to do with dysautonomia. So today on the show, we're going to uh focus on several hot new interesting aspects, which include the relationship between dysautonomia and MCAS, which is mast cell activation syndrome, and the link between dysautonomia and EDS, which is Ellers Danville syndrome. The association between uh dysautonomia and long COVID is well, we're gonna talk about that, and an over and an overall deep dive into the immune connection with dysautonomia. Now, a long time ago, my veterinarian wife Cheryl, I always have to say something about Cheryl on the podcast, of course. We love Dr. Cheryl Sun. She's the new taught me an important lesson from her vet world that I applied to human medicine over the years, and it goes like this a dog can have ticks and fleas at the same time. Which is really interesting. So when a person comes in with multiple things going on, it could be just ticks and fleas, two entirely separate things, or these seemingly separate diseases can be related. And in the case of dysautonomia and things like MCAS or Ellers Daniel syndrome and others, I I think we'll find that there is ample evidence that they are strongly related.

SPEAKER_04 16:24

Tyler, let's start the discussion by exploring the immune connection with dysautonomia, since that can tie a lot of this together. Most people think of dysautonomia as purely a problem with the autonomic nervous system. How do you reframe that to address the role of the immune system?

SPEAKER_01 16:42

Yeah, sure, Lens. I think we really have to stop looking at the nervous system and the immune system as just two completely separate entities. Trevor Burrus, Jr. It's all connected in the time. I say that all the time on the show. It's all connected. That's right, Dr. Mack. They are intimately connected. They're in cons constant bi-directional communication. When we see disotinome, we are we are very often looking at a nervous system that is under attack or a nervous system that is responding to a systemic alarm bell being rung by the immune system itself. Here's where I I want to make a point and I feel very strongly about is that chasing the symptoms of these is a very poor approach. And I know you you're in the same boat with me on that one, Dr. Mack. And so I think if if you just try to force the heart rate down with beta blocker, you you're not you're just masking the smoke while the fire kind of rages on. It's not to say that you might not need the beta blocker right now, it might be a good thing to have, but you're not solving necessarily the root cause here. And so we have to ask why the autonomic nervous system is misfiring. And very often the answer lies in the immune system. And that is actually where the fire that we need to where the fire, fire is and where we need to put that out in there.

SPEAKER_02 17:54

So uh Tato, I think we're seeing some interesting studies uh on the uh autoantibodies against adrenergic and muscarinic receptors that keep appearing in the research. Can you kind of walk us through those and what they are and how they affect the autonomic nervous system?

SPEAKER_01 18:08

Absolutely. Yeah. This is where the science gets really fun for me. Um I like looking back at and and researching all these types of things. So receptors are are like little keyholes on the surface of your cells, right? Adrenergic receptors respond to adrenaline and noradrenaline. They control that sympathetic fight or flight response, like speeding up your heart rate and constricting your blood vessel, blood vessels. The muscarinic receptors respond to acetylcholine. They are they control that parasympathetic, that rest and digest response, like like lowering your heart rate and stimulating digestion. So in in in many dysautonomia patients, particularly POTS patients, researchers are finding autoantibodies. And autoantibodies are these rogue immune proteins that mistakenly target and bind to the bind to these specific receptors. So your immune system is literally blocking or inappropriately stimulating the various switches that control your heart rate and blood pressure. There's a lot of research on that, and I'm going to provide that with you to you, Dr. Mackie. You can put it in the show notes. And this is a really cool um article on that that you guys can take a look at. And so what that is, it's an autoimmune attack on the autonomic infrastructure itself. And if you don't know what that is happening, you'll spend years chasing the downstrown, the downstream symptoms without ever actually addressing that root cause.

SPEAKER_04 19:29

Small fiber neuropathy also shows up frequently in dysautonomia patients. Does that tend to be immune-mediated as well?

SPEAKER_01 19:37

I think so, yeah, very often. So small fibrone neuropathy or SFN, we like to call it, is damage to the tiny unmyelinated nerve fibers in the skin and organs. These are the exact nerves that control autonomic functions like sweating or blood vessel constriction. While the SFN can be caused by metabolic issues like dis auto like excuse me, like say uh dis uh diabetes, uh, emerging evidence published by JAMA Neurology and other peer-reviewed literature demonstrates that inflammatory and autoimmune mechanisms may play actually a pretty big role, especially in idiopathic cases, meaning cases where they don't know the cause, which is extremely common in young, otherwise healthy dysautonomia patients, right? So the immune system is creating an inflammatory environment that damages these delicate nerve endings.

SPEAKER_02 20:28

You know, over the years, Toddler, it seems like I've seen many patients kind of interestingly and sadly who trace their dysautonomia back to uh a viral or bacterial infection, such as Epstein Bar virus or Lyme disease or now COVID. Uh they were kind of cruising along through life and doing great, and then they got a viral infection, and boom, this autonomy hit them like a sucker punch in the gut, and it kind of robs them of their vibrant life, often in their youth. And so, what's the proposed mechanism for how an infection zaps the autonomic nervous system?

SPEAKER_01 20:57

Oh, uh yeah, exactly. You know, that's actually was one of the things that hit me too. Whenever we had that, when I first was diagnosed, I had that those those titers were high for EBV. And I think there are a few mechanisms here at play, and and I don't think they're mutually exclusive. So, first is this uh molecular mimicry. The virus or the bacteria has proteins on its surface that look very similar to the proteins on your own nerve cells or receptors. Your immune system creates anti-antibodies to fight the infection, but because of the of the structural similarity, those antibodies cross-react and start acting on your own nervous system. The immune system makes the mu the immune system mistakes self for for enemy. And I think another one second would probably be danger response. It's and it's a con it's a concept pioneered by a doctor out of UC San Diego. And it's when a cell is infected or under stress, the mitochondria, the energy factories of the cell stop producing energy and instead shift into a defense inflammatory mode. They are Essentially like sounding the alarm, if they get stuck in this mode and cannot switch back to energy production, you get chronic inflammation, prolonged fatigue, and a nervous system that is locked into a state of basically high alert indefinitely. Ooh, sounds terrible. Yeah. I would say so. Yeah.

SPEAKER_04 22:18

Why do some people develop dysautonomia after an infection, but then others with the same very same infection recover completely? That's a question I hear all the time.

Immune Drivers And Autoantibodies

SPEAKER_01 22:29

Well, that's a million-dollar question. And Lindsay, I I think personally, I I after looking at the research and just kind of experiencing this myself, I think the answer lies in the terrain, not just the pathogen. It's not just about what virus you were exposed to, it's about the state of the host when that virus arrives. And so in this in the Dysodonomic Recovery Academy, we talk extensively about mitochondrial resilience. If if your mitochondria are already weakened by a modern toxic environment, specifically a lack of natural sunlight, chronic exposure to artificial blue light at night, high deuterium levels in processed foods and tap water and non-natum electromagnetic fields, your your cellular battery is already drained before the virus even arrives. And when a virus hits a depleted body, the immune system cannot mount a clean, effective response. So essentially the virus is the straw, if you will, that breaks that camel's back. The system collapses into that that chronic dysfunction. Todd, before you proceed, let me ask you, what do you mean by deuterium levels? So deuterium, so there's this deuterium is non-radioactive isotope of hydrogen. It looks just like a hydrogen, has an extra neutron, but it's just heavy. It's called heavy hydrogen. And so that can be found in foods, especially processed foods. And because it acts like hydrogen, when it goes through the process of making hydrogen goes through the process of making energy, you you get ATP and water is produced. But whenever the high levels of deuterium are in that, in that process, it it breaks the the engine, if you will, and so you're not able to produce the energy appropriately. So in in a body with a rebo, robust, well-charged terrain, the the same virus comes in, the immune system mounts a full response, clears the infection, and the mitochondria go back to making energy. That person recovers in two weeks, say. The difference is not necessarily the virus, the difference is is the terrain.

SPEAKER_02 24:32

However, there are still a few what I call black boxes. I think mitochondrial health is one of them. You know, and protein folding and stuff like that. You know, I think we kind of understand, you know, what mitochondria do and how they do it, but uh but really, you know, when things go wrong, it's really hard to I I think we don't really have the tools to really get after mitochondrial function. But uh to your point, a lot of it probably goes back to the fundamentals of of terrain and diet and and and those kind of things and toxins. Uh but uh it's interesting. I yeah, I think that mitochondria thing is maybe the the kind of next frontier to a lot of diseases would be chronic fatigue syndrome, fibromyalgia, dysonoma, you you name it. Yes, right. All these uh l low energy states. Uh absolutely. Yeah. But yeah, it's interesting. The gut contains a massive portion of the immune system and is even has its own separate nervous system called the enteric nervous system. So how does gut immune dysregulation feed into autonomic dysfunction?

SPEAKER_01 25:30

Sure, the the gut and the brain are connected by the vagus nerve, right, which is the superhighway of the parasympathetic nervous system. So we we know that about a huge portion of your of your immune system lives in your gut. That GALT is the acronym, a gut-associated lymphoid tissue. It's also on your skin as well. If you have gut dysbiosis, which is an overgrowth of bad bacteria, or what we've talked about here a bunch on this podcast, there's autonomy of cybo or SIBO, people say, small intestinal bacteria overgrowth, those bacteria produce endotoxins, particularly lipopolysaccharides or LPS for short. And these toxins trigger a massive immune response in the gut, creating systemic inflammation that travels right up to the vagus through the vagus nerve to the brain, causing neuroinflammation and really autonomic chaos. And here is a critical piece that most people miss as well, Doc, is I I more and more I think about uh study sunlight and light, that people are not getting it like they used to. And I think that's a is a is a big issue in in especially regards to MCAS. And so adequate sunlight exposure directly promotes actually the growth of beneficial gut bacteria and the production of butyrate, a short chain fatty acid that is the primary fuel for your colon cells, and it's a very powerful mast cell stabilizer, also. And so a lack of sunlight means a lack of butyrate, which means a leaky gut, which means systemic inflammation. And again, it's all connected.

SPEAKER_02 26:57

Especially neuroinflammation. That's right. Right, because butyrate is very powerful as far as it's that gut-brain affection on the brain and and and and modulating neuroinflammation. It's interesting, Todd, isn't it? Uh in this modern day world we live in, we're out of sync with circadian rhythms. Oh, we we are and especially, you know, I I I hate to admit, uh, I think for many years I I called myself kind of a a night person. I worked the ER night shifts and and I just seem to have more energy at night. But uh I think I've it took me many, many two too many years that I'd like to admit to realize it was not good for my health. And and uh I think as much as we can sort of uh you know go back to the caveman ways and or cave woman ways and and you know, wake up when the sun comes up and go to bed when the sun comes down and avoid, you know, artificial like socially fluorescent lights or whatever, then then that that's a good thing. But uh yeah, I I think that we we underestimate the role of circadian rhythms, even on your gut bacteria and on your mind and and and stuff like that. So uh so yeah, I agree. Absolutely. Yeah.

SPEAKER_04 27:58

Makes me think about early to bed, early to r rise. Yeah, healthy too. Let's delve just a bit more into that intestineal intestinal permeability or the leaky gut, because that is so big. So what does the role of leaky gut play in this immune dysautonomia connection?

SPEAKER_01 28:18

Uh yeah, absolutely. Well, doctors mentioned that it's it's central, right? Uh when when those tight junctions in your intestinal lining break down, which can be caused by stress, poor diet, toxin exposure, think like glycophate exposure is a major toxin at play here, or lack of sunlight and lack of sunlight-induced butyrate, those endotoxins and undigested food particles leak directly into your bloodstream. Your immune system sees them as foreign invaders and launches a systemic inflammatory attack. This chronic, low-grade inflammation keeps the autonomic nervous system locked in sympathetic fight or flight state. And you cannot heal dysautonomia if your gut is leaking fire into your bloodstream.

SPEAKER_02 29:00

You know, Todd, it's interesting. For years and years and years, I think of people in this sort of, I don't know, functional integrative alternative space have been talking about leaky gut, and all the mainstream doctors said, oh, they're just a bunch of hypnoquac, doctors, you know, there's no such thing as leaky gut. Well, guess what? Yeah, exactly. They figured out there was. But they couldn't bring themselves to admit it, so they call it an intestinal permeability. Oh, yeah, of course. It's the same thing, right? It sounds more high-fluent than academic, but it's the same thing. But I think everybody where Harvard Mayo, you know, you all the major uh anybody who's up to the science these days would admit that there's something called intestinal permeability, which is the same thing as leaky gut. But so you know, I'm I'm a big gut guy. We have multiple podcasts on gut health, but when people do get after it and see they work on their gut, do they see clinical improvements in dysodimus as their gut improves? Absolutely. And so kind of describe that for me, Hunter. Sure. Well, you're not a big gut guy, Dr.

SPEAKER_01 29:51

Mack.

SPEAKER_02 29:52

You don't have a you don't have a big gut. So although Dr. Shiro reminds me every day that it's getting bigger. So Okay, okay.

SPEAKER_01 29:59

Well, but yeah, that that's correct. The research definitely indicates that there's uh targeted therapies that can be used like rifaximin and neomycin to clear like bacterial noise. So you have L-glutarate, uh excuse me, L-glutamine and butyrate to kind of help seal those leaky gut junctions, if you will. We use a spore-based probiotics, something like a megaspore to help kind of restore the microbiome. Really like that that brand.

SPEAKER_02 30:26

And the reason that brand's helpful is it often is more effective at in surviving the stomach acid. That's exactly right. And it gets down into the intestines where it's gonna be large intestines where it's gonna be helpful.

SPEAKER_01 30:35

Right, that's spore-based, yeah. Exactly. So patients often often, you know, you know, not not for me. I don't have I don't have patients, but you know, people like to often see a dramatic reduction and in their brain fog, their heart rate stabilizes and and their energy returns. And it's good health starts in the gut, Tonner, right? That's right, that's right. And so when you put that that that that fire out in the gut, you remove that chronic stressure that is keeping the autonomic nervous system dysregulated. And you know, it's not magic, it's just biology. And I I can personally attest to this improvement, not just to myself, but in a whole host of other people that I've worked alongside. Trevor Burrus, Jr.

SPEAKER_02 31:12

You know, I've had a number of patients who've had dysautonomia, and it's really been amazing. One of the things that has helped them the most was treating the gut, especially like treating cyboruffacima, and sometimes boom, that will just really kickstart their their progress and and really help them out. Absolutely. Yeah, it's it's been quite impressive. So, Tyler, is there anything else you'd like to say about the immune connection with dysautonomia before we move on to our next subject, which is MCAS?

Terrain And Mitochondria After Infection

SPEAKER_01 31:37

Sure. I think just this that we have to stop really viewing the body as a collection of isolated parts. The immune system and the nervous system are all dancing together. If the music is chaotic, both partners are going to stumble. The the fix to fix the nervous system, we have to calm the immune system. And to do that, we have to fix the cellular environment. That is the foundation, I think, of everything.

SPEAKER_02 32:00

All right, great, great, great. So now let's uh move on and explore the association between dysautonomia and MCAS, which again, once again, is mast cell activation syndrome. You might also see it as mast cell disease or mast cell activation disease. But the mast cells sit at the interface of the immune and the nervous system. So so please start describing for us what MCAS actually is and how central mast cells are to the immune component of dysautonomia.

SPEAKER_01 32:24

Absolutely. So yeah, if you're in the dysautonomia realm, you know that MCAS has kind of really come about here in the past uh couple of years. You know, it's obviously always been there for a long time, but um, it's really making headway and here just recently. And so MCAS is a condition where your mast cells become hyperreactive. And to understand it, you have to first have an understanding of um what mast cells actually are. So let's let's let's talk about that for just for a second. So mast cells are your body's frontline immune sentinels. They are strategically positioned at the borders between your body and the outside world, um, in your skin, your gut lining, your lungs, and your blood vessel walls. They are packed with over a thousand different chemical mediators, including histamine, but also tryptase, prostylaglandins, leucotrines, and cytokines, you know, just to name a few. Wow. Yeah, exactly. Powerhouses, right? Yeah, absolutely. So think of them as I like to think of them as like little grenades. So when they sense danger, an allergen, a pathogen, a toxin, they explode and release their chemical payload to create inflammation and fight off that threat. So in MCAS, the alarm system is just broken. The mast cells are not necessarily overproducing like in mastocytosis, but they are inappropriately degranulating in response to everyday non-threatening stimuli, right? Food, temperature changes, stress, exercise, and even artificial light and electromagnetic fields. Now, here is a critical link, though, between to to dysautonomia, and this is backed by a landmark 2024 review paper by uh by and it was published in the Annals of Allergy, asthma and immunology. It says it states that mast cells are physically located right next to nerve endings, particularly autonomic nerve fibers, and right next to blood vessels. So they are literally wrapped around the wiring of the autonomic nervous system. Guilt by association, right? That's right, exactly. So when they degranulate, they bathe the autonomic nervous system in a highly inflammatory chemical soup. This is not a coincidence, this is just architecture here.

SPEAKER_04 34:46

So the mast cells sit right next to autonomic nerves and blood vessels. So when they release these inflammatory chemicals, they essentially pour inflammation directly onto the autonomic nervous system. That's what we're saying. What what about histamine? How does it specifically affect autonomic function and what does that practically mean for a patient?

SPEAKER_01 35:07

Sure. Yeah, I uh histamine is a very potent vasodilator. It causes your blood vessels to open up and become leaky. Now, if if you're a POTS patient, your your core problem is already that your blood vessels aren't constricting properly when you stand, causing your blood to pull on your legs and deprive your body of your brain of oxygen. So if if you had a massive histamine dump from hyperactive mast cells on top of that, your blood vessels dilate even further. Your blood pressure drops, your brain panics, and the autonomic nervous system responds by dumping adrenaline, epinephrine and norepinephrine, to force the heart to write beat faster and harder to compensate. So practically a patient eats a high histamine food, their mast cells degranulate, their blood vessels dilate, and suddenly their heart rate shoots to 150 while they're just sitting on the couch. They think they're having a panic attack, but it's actually a mast cell-driven autonomic crisis. And it goes beyond just histamine. Prostyloglandins from mast cells cause flushing, bone pain, and brain fog. Leucotrines cause airway constriction, tryptase can directly activate nerve fibers and cause pain. The mediator soup is uh pretty complex, as you can see.

SPEAKER_02 36:27

Yeah. So is this kind of a chicken and egg relationship? Uh does the dysautonomia trigger MCAST, or does MCAS drive dysautonomia, or is it truly a bi-directional relationship? What's the current science suggesting?

SPEAKER_01 36:39

Sure. This is a this is a great question, and I really love it because the answer is so important for how we really approach treatment. The science strongly suggests it's bi-directional, a vicious, self-reform-reinforcing cycle. And understanding the cycle is really the key to breaking it, right? So we have to know what's going on here. And so let me walk you through the evidence. On one side of the cycle, we have MCAS driving dysautonomia. A 2021 study published in the Journal of American Heart Association examined 69 patients with POTS and found that 42% of them had laboratory evidence of mast cell activation syndrome. That's big. That's huge. Um yes, and and so elevated prostaglandins, histamine, and methylhistamine were what was looked at. Now, just as a caveat here, there were a thousand different mediators, and those are the ones that we're looking at, and 42% of those had those. So it could be a lot larger. The mast cell mediators were directly causing postural tachycardia and lightheadedness. So MCAS is clearly driving dysautonomia in a substantial subset of patients. But now here's the other side of the cycle, and this is where it gets really fascinating. The autonomic nervous system regulates mast cells. Specifically, parasympathetic vagus nerve activity stabilizes mast cells and keeps them calm. But when the sympathetic fight or flight system is dominant, which is the hallmark of dysautonomia, the body releases neuropeptides like substance P and corticotropin-releasing hormone or CRH directly from nerve endings. And these neuropeptides are potent triggers for mast cell degranulation. So you have a patient whose mast cells are causing their heart to race, that's sympathetic activation. That sympathetic activation then releases substance P and CRH, which cause the mast cells to degranulate even more. It's a vicious cyclone. That's exactly right, which causes more histamine, which causes more tachycardia, which causes more sympathetic activation. It's a self-feeding loop of neurological and immunological chaos, really.

SPEAKER_04 38:50

So neither one is truly the chicken or the egg. They're both feeding each other.

SPEAKER_01 38:55

Exactly. And this is precisely why symptom-chasing approach fails so completely. If you're only tr if you only treat the tachycardia with a beta blocker, you're not addressing the mast cell activation. If you only take antihistamines, you're not addressing the autonomic dysfunction. You have to attack the cycle from both ends simultaneously. And more importantly, you have to identify and remove the upstream triggers that are keeping both systems activated in the first place.

SPEAKER_02 39:22

Aaron Powell Well, that's a really interesting uh clinical insight, Tonner. Thank you from so much for sharing that with us. What are some of the important clues in the patient's history that might tip the provider or the patient off that mast cell is in the picture and is alongside the dysautonomia?

SPEAKER_01 39:36

Yeah, sure. I I I you're looking at a multi-system presentation that goes beyond just heart rate, right? And so here are some of the, I would say the major red flags. I think there's like, I think I have like five here. So first you have flushing and skin reactions. So think like chronic, unexplained rashes, hives, or flushing, especially on the chest or neck. Often these are triggered by heat, exercise, or stress. Another one would be gastrointestinal chaos, so sudden unpredictable diarrhea or severe abdominal cramping after eating, particularly after high histamine foods. The third would be new onset allergic reactions, so straining reactions, strange reactions to like medications, supplements, or environmental triggers that where they didn't actually have those previously. Fourth would be neurological symptoms, something like brain fog, headaches, anxiety that fluctuate dramatically and seem to be triggered by food or the environment. And fifth would be the post-exertional malaise, which is like crashing for days after minor physical activity, which is all uh which is often driven by like a histamine dump that uh that occurs during exercise. So if a POTS patient has three or more of those features, MCAS is almost certainly in the picture.

SPEAKER_04 40:52

Are there any particular triggers that tend to provoke a flare of both conditions, both MCAS and dysautonomia?

Gut Dysbiosis Leaky Gut Inflammation

SPEAKER_01 41:00

Yeah, sure. So and understanding these triggers is is incredibly empowering for patients, right? To know what's actually going on. So and if you ask anybody that has both of these, they'll know heat is a major one, right? It causes that vasodilation, which worsens pots, and then it also directly triggers mast cell degranulation. High histamine foods, right? Aged meats, fermented ferments, leftovers, spinach, avocados, wine, those are all obvious triggers, right? Stress is another one, both physical and psychological. Those can activate that HPA axis and release that CRH, which directly degranulates mast cells. But but here is one of the one that almost no one ever talks about, and that's artificial blue light and non-native electromagnetic fields. And in in in the dishotonomer academy, we we discuss how mast cells are environmental sensors, right? They respond to the pathogen of or of artificial light. Yep, I called light a pathogen. Um but uh yeah, when when you are staring at a screen late at night, you are destroying your melatonin production. Melatonin is not just a sleep hormone, it's a powerful antioxidant and one of the most important mast cell stabilizers in the body. And without adequate melatonin, your mast cells become extraordinarily volatile. Um, and this is a root cause trigger that the conventional medicine world is just, I would say, completely ignoring almost.

SPEAKER_02 42:36

Other than modulating your exposure to blue light, what is the role of other lifestyle interventions like diet, exercise, hydration, stress reduction, and so on when it comes to dysautonomy and MCAS? Are these helpful if you work on those?

SPEAKER_01 42:51

Oh a hundred percent. Yes, Dr. Mack. And then and they and I would say they're they're foundational, right? They're not ad adjunctive. You can't supplement your way out of a bad environment. The lifestyle interventions are are in a lot of ways the medicine. Now, the the the first priority obviously is stabilizing those those mast cells. And that means a strict circadian reset. You get morning sunlight in your eyes within 30 minutes within 30 minutes of sunrise, without glasses or contacts, to set that master clock, that superchismatic nucleus, and trigger the release of the anti-inflammatory alpha MSH, which directly calms mast cells. And you block artificial blue light at night with amber or red lens glasses to protect your melatonin production. Um, hydration is critical as well. We use high quality sea salt brines to maintain electrical charge of fascia and blood vessels. We also discuss the role of high quality water in rebuilding the mitochondrial battery, which is the the energy source, if you will, of that drives, I think, all healing. The the for stress reduction, we have to break that. Sympathetic loop. So daily vagus nerve stimulation, either with a transcutaneous vagus nerve stimulator that we use or through specific like breathing techniques. Those are all essential. And then, you know, limbic system retraining programs to help the brain tell the body that it's safe. You know, which is the you know, which is actually critical for breaking that mast cell sympathetic feedback loop. And and you you have information or access to all these in your programs, Tom, or is that right? Yes, sir. Well, we we talk about all of those in our programs. And and so anybody that comes through our our dysautonomia recovery academy, we we we we go through all of those those things with them. Great.

SPEAKER_04 44:39

When it comes to diet, does a low histamine diet help these patients? And by the way, we've got a great copy of the low histamine diet at McMinnMD.com in the document section too for people.

SPEAKER_01 44:51

Absolutely, Linz. I think it's a it's an essential short-term tool, right? A low histamine diet acts kind of like a bucket. If your histamine bucket is overflowing, you're going to have symptoms. So by removing the high histamine foods, you lower the level in the bucket, giving your body breathing room to kind of start healing. So, however, you know, and I think this is critical, the goal is not to eat a restrictive diet forever, right? The goal is to use the diet to calm the system while you fix the root cause, healing the gut, restoring the microbiome, and fixing the circadian rhythm. So once the mast cells are stable and the gut is healed, most people can reintroduce foods without reacting. So the diet is a tool, not a prison sentence.

SPEAKER_02 45:37

So next, we'll uh briefly take a look at the association between connective tissue disease and dysautonomia. But before we turn the corner, I'd like to let you know that I have a homegrown protocol for MCAS, which I will share with you. You can find that at McMinnMD.com in the document section. And Tyler, any finding pearls of wisdom on MCAS and dysautonomia before we move on?

SPEAKER_01 45:58

I think just remember this that mass cells are not broken or bad. They are healthy cells just responding to a pat uh a pathological environment. They they are the canary in the coal mine. If you want to, if you if you want to calm them down, you have to change the signals that you're sending them. So remove the environmental triggers, fix the gut, restore the circadian rhythm, and the mass cells will oftentimes quiet down on their own.

SPEAKER_02 46:23

Well, that's great. Well, thanks so much. Uh and now moving on, um, uh let's talk about the association between dysautonomia and connective tissue disease. One of the more common such diseases is called Ellers-Danlos syndrome, which is which often appears in an interesting triad alongside with dysautonomia and MCAS. In fact, the research suggested up to 40% of hypermobile EDS patients have some form of orthostatic intolerance, and conversely, about 18% of POTS patients have EDS. So the connection is clearly real. Todd, start by giving us a very brief overview of Elders-Damlo syndrome.

SPEAKER_01 46:59

Sure, you know, specifically, Elders Damlo Syndrome is specifically that the hypermobile type, right, the HEDS, is a genetic context tissue disorder characterized by faulty collagen. So collagen is the structural glue that holds your entire body together, your skin, your joints, your blood vessels, your gut lining, and your nervous system sheathing. In EDS, the glue is weak. It's disorganized and it's stretchy. This leads to joint hypermobility, frequent dislocations, chronic pain, and incredible like fragile tissues.

SPEAKER_04 47:33

Isn't there a proposed mechanism linking EDS to MCAS dysautonomia and overall autonomic nervous system dysfunction?

SPEAKER_01 47:42

Yeah, there is. And it's a fascinating mechanical and biophysical link that ties the whole trifecta here together. So regarding dysautonomia, your blood vessels are made of connective tissue. So when you stand up, your blood vessels are supposed to squeeze tight to push blood to your brain. But in EDS, the blood vessels are made of that faulty, stretchy collagen. They're floppy too. You know, they're kind of too floppy, really. So when the autonomic nervous system sends the signal to constrict, the vessels just stretch out kind of instead. The blood pulls in the legs and you get pots. The autonomic nervous system is actually working correctly. It's the structural substrate that's that's failing it. Now, regarding M regarding MCAS, this is where the concept of a fascial spectrum comes in. So the fascia is the connective tissue matrix in the body. And in EDS, because the collagen is loose and disorganized, it creates constant mechanical microstress on the tissues. So mast cells are mechanosensitive. They react to physical stretching and pulling. The constant instability of the joints and tissues in EDS physically triggers the mast cells to degranulate, releasing histamine, which then makes them which then makes the blood vessels even more leaky and more stretchy. It's it's the ultimate vicious cycle here. Loose connective tissue activates mast cells, mast cells release histamine, histamine makes the connective tissue looser.

SPEAKER_02 49:18

It's also interesting that there's a significant component with EDS and gut health, including the health of the gut wall. That's right. And and that it actually, I think, with some patients is quite significant. Because the the when the gut wall is not healthy, then we get more leaky gut, we more inflammation and neuroinformation. So I think that's another uh mechanism by which uh you know EDS, uh especially hypermobile EDS, can affect this disease. 100%, Doc. Absolutely. All right, so before we move on to our last topic, which is long COVID, is there anything else you'd like to tell us about the leap between Eller's Dandelos and Dysautonomia?

SPEAKER_01 50:07

So I'll I'll emphasize one thing, and I think it's pretty important, is you know, while EDS has a genetic component, gene expression is controlled by the environment. So that's epigenetics. And in Dysotonomia Recovery Academy, we we we focus on rebuilding the what we call the living matrix by optimizing the electrical charge of your cells through grounding, sunlight, reducing that deteriorum, which I was mentioned earlier, which is a huge big can of worms. But we can actually help the body structure water around the collagen proteins more effectively, which provides stability to the connective tissue even with the underlying genetic mutation. So you're not doomed by your genetics, and actually I would say that the environment is the medicine in this case.

SPEAKER_02 50:49

You know, I always think of the analogy, and I've mentioned this before in the podcast, you know, you can have two identical twin sisters with the same genetic risk for breast cancer, and one gets it and one doesn't. And it all has to do uh with that concept of the terrain that you mentioned earlier, Tyler. And that uh of course the terrain affects then your epigenetics, which affect genetic expression. So exactly. So all right, finally, let's uh explore uh the hot new topic of the role of dysautonomia uh in long COVID. You experienced dysautonomia, Tyler, well before long COVID came along, and at that time it was largely an unknown condition outside the specialist circles. But are we seeing a fundamental shift in how the medical community views dysautonomia uh now that so many new cases are surfacing due to long COVID?

MCAS Basics And Why It Matters

SPEAKER_01 51:34

Absolutely. It's a paradigm shift, really. So before 2020, dysautonomia patients were largely ignored and were told that they had anxiety. But COVID-19 acted as a mass disabling event, triggering autonomic nervous system failure in millions of people simultaneously. The sheer volume of patients presenting with textbook pots and MCAS post-COVID forced the medical establishment to finally acknowledge that postviral dysautonomia is a very real, very severe physiological condition. It has brought a massive influx of research funding and awareness that we desperately needed. And in a tragic way, long COVID has been a gift to the dysautonomia community.

SPEAKER_04 52:20

Long COVID has a famously long symptom list. Which symptoms should make a clinician think that there is a dysautonomia component to a patient with long COVID?

SPEAKER_01 52:31

Yeah, sure. Good question there, Lens. If if a long COVID patient complains that their heart races when they stand up to brush their teeth, say, or they feel dizzy and faint in the shower, that is dysautonomia. If if they have profound post-exertional malaise, meaning they they crash for days after minor minor physical or mental effort, that is dysautonomia. If they have severe brain fog, temperature intolerance, or new onset gastrointestinal paralysis, those are all screaming dysautonomia. The orthostatic component is the key different differentiator.

SPEAKER_02 53:07

You know, it's so interesting, Tyler. Some of these patients come in and to use your words, uh, their symptoms are screaming dysautonomia. They are. But somehow we have our earplugs in as doctors and we just don't hear it. I had a very similar patient. Uh she had these conditions and she saw multiple doctors who never connected to dots, and she called me and without even examining her remotely over the phone, I said, You've got dysautonomia. So she ended up going to the dysautonomia clinic up at Vanderbilt, and sure enough, she had big dysautonomia. But it just seems like, once again, these symptoms are screaming dysautonomia. But somehow we just have our blinders on and we just don't don't don't heed the call. But um anyway, so what are some of the leading theories these days for how long COVID triggers dysautonomia?

SPEAKER_01 53:53

I I think that there are, I'll give you three main mechanisms, and and I don't think they're mutually exclusive. First, uh there's obviously SARS-CoV-2 virus that can directly uh infect the nervous system, and that includes the vagus nerve and the brainstem, and that can cause direct structural damage. Now, second, the virus triggers a massive immune response. So you think of like a cytokine storm, and that activates mast cells systemically. Those mast cells get stuck in the what we call on position, leading to MCAS, which then drives the dysautonomia through the exact, remember, biodirectional mechanism that we described earlier. And third is the virus trigger triggers the protection of those autoantibodies against the body's own autonomic receptors, the adrenergic and muscarinic receptors that we discussed. So the immune system gets confused by molecular mimicry and starts attacking the very infrastructure of the autonomic nervous system.

SPEAKER_04 54:54

How long after acute COVID infections do you typically see dysautonomia symptoms emerge? And could they emerge immediately or months later?

SPEAKER_01 55:06

Yeah, sure. I I I think it varies significant uh significantly. So so for for some, the the acute infection transitions seamlessly into long COVID, right? There's no there's no time gap really. They just never get better. But for many others, there's this latent period where they recover from the initial respiratory infection and they feel okay for a few weeks or even a few uh a couple months, and then suddenly the autonomic symptoms just kind of hit like a freight train. This this really delayed onset is very characteristic of an autoimmune or mast cell-driven process that takes time to build up momentum. It's not unusual to see dysautonomia emerge three to six months after the initial infection.

SPEAKER_02 55:51

The vagus nerve keeps popping up uh in the long COVID uh research and conversation. Tell us briefly about the vagus nerve and then what role does vagal nerve injury or dysfunction play in long COVID dysautonomia? Sure.

SPEAKER_01 56:03

The vagus nerve is the longest cranial nerve in the body. It wanders from the brainstem all the way down through the chest into the abdomen, touching the heart, lungs, the gut. And it is the primary driver of the parasympathetic, right? Rest, digest, repair system. It's also the body's internal anti-inflammatory brake pedal. So when the vagus nerve is firing properly, it sends signals to suppress mast cell activation and reduce systemic inflammation. In in long COVID research, it's showing that the vagus nerve is often inflamed, damaged, or and functionally impaired. When the vagus nerve loses its tone, that brake pedal is gone, right? The sympathetic nervous system runs wild, causing the racing heart and anxiety. The immune system runs wild, causing systemic inflammation and mast cell activation, and the gut becomes dysregulated because the vagus nerve is the primary controller of gut motility and the gut brain axis. So restoring vagal tone is absolutely critical for recovery. We do this through the vagus, what we call transcutaneous vagus nerve stimulation, different types of breathing techniques, cold water, face immersion, humming, singing, all of which have been shown to activate that vagus nerve.

SPEAKER_04 57:18

Are there lessons from long COVID dysautonomia that apply to other post-infectious dysautonomia syndromes, like those we see with chronic Lyme or Epstein Barr virus?

SPEAKER_01 57:29

Oh, yeah. Yes, 100%. So the the trigger might be different, right? COVID, Lyme, EBV, or even mold, like you were mentioning, Dr. Mack, the downstream mechanism is really the same. It is mitochondrial failure, mast cell activation, and autonomic nervous system dysregulation. The protocols that we are using to help long COVID sufferers re recover are the exact same protocols we use for post-line, post-EVB dysautonomia. It's all about rebuilding that cellular terrain. The pathogen is the spark, but the depleted terrain is really the fuel.

SPEAKER_02 58:08

So, you know, Tyler, I've been safe for a long time, it's a sexist world we live in. And we even find a striking female predominance in Elders-Danlos syndrome with a female to male ratio of about nine to one, and also with pots with a female to male ratio of about five to one. So how is this explained? And uh what do we know about the hormonal influences on these conditions?

SPEAKER_01 58:27

Yeah, it's it's a striking disparity. Uh, and and the primary driver, I think, is is estrogen. I know estrogen is an immune stimulator, and specifically it directs it directly stimulates mast cells to release histamine. So, furthermore, histamine itself can stimulate the ovaries to produce more estrogen. So in women, you can get caught in this self-reinforcing estrogen histamine loop. And this is why many women with POTS and MCAS feel significantly worse right before their their period or during ovulation when estrogen is uh is at its peak. Additionally, you know, estrogen affects collagen synthesis, making joints more lax, which exacerbates the hypermobility in EDS. Now, testosterone, on the other hand, tends to be immune suppressive and stabilizes mast cells, which offers men some degree of protection in this case. So this hormonal access is a critical consideration in treatment. And it is why some women see significant improvement when they address the hormonal dysregulation alongside the autonomic and immune components.

SPEAKER_04 59:34

Is there anything else you'd like to mention about dysotonomia and long COVID before we can begin to wrap all this up?

SPEAKER_01 59:40

I just want to leave a message of hope. Long COVID dysotonomia is terrifying, but it's not a life sentence. The body has an incredible capacity to heal if we remove the interferences and provide the right biophysical inputs. I recovered from severe dysotonomia. I have watched many in our community recover, and recovery is possible.

SPEAKER_04 59:59

That's good to hear. Good message of hope. We always love that message here on this podcast.

SPEAKER_01 1:00:05

That's right.

Histamine Surges And The Vicious Loop

SPEAKER_04 1:00:06

So, what does the diagnostic journey look like for these patients in order to finally arrive at the right diagnosis?

SPEAKER_01 1:00:14

Yeah, it usually involves ruling out everything else first. Um, a patient might see a cardiologist to rule out structural heart disease or an endocrinologist to rule out thyroid issues or adrenal tumors. Um, once the standard tests come back clear, they need to find a specialist, so usually a neurologist or a specialized cardiologist who understand autonomic testing. And this was my experience as well. Went from ER, cardiology, gastroenterologist, neurologist, and you know, that that was my experience as well.

SPEAKER_04 1:00:45

So then that's diagnosis. What about treatment? From a conventional medical standpoint, we often use medications when we're talking about dysautonomia, like beta blockers, midadrin to help control the heart rate. We might use uh fluidrocortisone to increase blood volume, along with salt loading or really aggressive hydration, compression garments, or different exercise protocols, physical therapy. But Tyler, without going into great detail, since we did discuss that on those two previous podcasts, just list for us some of the cornerstones of therapy that might help patients with dysautonomia recovery from a functional approach.

SPEAKER_01 1:01:25

For sure. I'm you know I'm not a physician, but and and I don't prescribe treatments, but the research strongly indicates that we have to address the cellular environment. So from a functional standpoint, the literature points to the profound importance of things like high dose B1, so estyamine, B1 therapy for autonomic signaling, vagus nerve stimulation, limbic system retraining. The research also emphasizes strict circadian alignment with morning sunlight and nighttime blue blockers and a high fat, low carb diet to support mitochondrial energy production. And when it comes to gut healing, studies show that clearing bacterial overgrowth, sometimes utilizing targeted therapies like rifaxamin, neomyosin, along with L-glutamine and butyrate and spore-based probiotics, is absolutely critical for reducing the systemic inflammation and driving the autonomic dysfunction. And also, uh, I'll say, you know, you know, lowering just omega-6's overall in general and increasing omega-3's, um, specifically DHA in your diet as well.

SPEAKER_02 1:02:26

You know, Tyler, some providers have advocated for directly addressing persistent viral infections. And do you agree with this? And if so, uh, then how would you go about that?

SPEAKER_01 1:02:35

I think that the research certainly supports addressing viral load, but I think there is a big caveat there. The literature indicates that you cannot just really bomb the body with antivirals if the immune system is is exhausted and the detox pathways are blocked. So you have to build the foundation first, fix the gut, stabilize the mast cells. Those are the key things. And then by that you'll restore that mitochondrial energy production. Once the body has that energy to fight, then the target therapies will are really where um it can be helpful. When then whether that's prescription antivirals managed by a physician or herbal protocols like monolorin or olive leaf extract, they can be used to help clear that persistent viral load. And so I do, I do think that sequence matters enormously in this case.

SPEAKER_02 1:03:22

And before we move on, let me mention there's a doctor by the name of Aviva Rom, that's A-V-I-V-A-R-O-M-M. And she has an excellent podcast on her protocol for EBV. On her podcast, uh, the name of the podcast is called On Health. Uh she's got like a couple hundred podcasts, and I don't have the exact number, but y'all can find it. So if anyone's interested in that protocol, you might want to check it out. Because I think a lot of the uh sort of antivirals we use don't really get EBV very well. They might get some of your um herpes viruses, herpes one, two, that kind of stuff. But yeah, I think EBV is really a bigger player in this than than folks might realize. And so I I really haven't seen any protocols I thought were better than what she proposed to, so you might want to check that out. Absolutely. All right so uh Tyler, uh let me back up a minute. You know, I I'm I'm a retired doctor myself, and and I I I've always stated this podcast is never about bashing doctors or bashing modern medicine. It saved my life, right? So I'm very grateful. And and again, doctors have not been trained in this, and we can't blame them if they don't recognize uh uh uh so so let's try to help them out a little bit. So put yourself in the shoes of the average primary care doctor who's been taught very little, if anything, about dysodonomia, and and who's never made the diagnosis before. And and so you you're sitting there, you got a patient coming, you got a 15-minute time slot, and the patient comes in with this overwhelming list of symptoms that goes on and on consistent with dysodonomia. Are there any certain like easy red flags in the history that might help you as a provider distinguish between dysautonomia versus just being stressed, anxious, or deconditioned?

SPEAKER_01 1:05:01

Absolutely. So I I I think and I'm so glad you're you're bringing this up. This is really good for us to to talk about. The biggest red flag is the orthostatic nature of the symptoms. So really simple. Ask the patient do your symptoms get significantly worse when you stand still? And do they improve when you lie down flat? Okay. Yeah. And that's it. So anxiety does not care whether you're you know what your posture is. Right. A panic attack happens sitting, standing, or lying down. If if their heart races and they feel dizzy only when upright, that is a physiological gravity problem, not a psychological one.

SPEAKER_02 1:05:42

Another that that's the autonomic nervous system that is controlling that. 100%. That's right. So if that's not working right, then you gotta be thinking there's some kind of problem or disautonomia going on.

SPEAKER_01 1:05:54

That's exactly right, Doc. Yep. Another red flag is the sheer volume of multi system complaints and a Young, previously healthy person, if someone suddenly has severe tachycardia, chronic diarrhea, temperature dysregulation, and purple pooling in their legs when they stand, this is not deconditioning. This is an autonomic failure. And the third red flag I would say here is uh post-exertional malaise. So if if exercise makes them significantly worse for days, that is not deconditioning. Deconditioning gets better with exercise. Disautonomia can get dramatically worse.

SPEAKER_02 1:06:30

You know, as a provider myself, I think it falls on the shoulders of a good primary care doctor to first recognize the disease. However, treatment's always pretty complicated and multifactorial. So I do think that it's wise for the patient to see a provider who specializes in this or even a center where they have a multidisciplinary team that can address all the aspects of this disease. Would you agree, Todd?

Triggers And Practical Stabilizers

SPEAKER_01 1:06:51

Oh, 100%. I completely agree. A PCP is is is the gatekeeper. Their job is to validate that patient, run the initial stand sit-stand test, and say, I believe you. I think this this is dysautonomia. Let's get you to the right specialist. Because the treatment requires managing the gut, the immune system, the nervous system, and the environment simultaneously. You absolutely need a specialist or a functional medicine practitioner who understands the interconnectedness of that trifecta, right? The POS, MCAS, and EDS. Trevor Burrus, Jr.

SPEAKER_02 1:07:22

And if I recall, you actually flew all the way we don't need to name names. You uh flew to Arizona to see a specialist right now.

SPEAKER_01 1:07:29

I sure did, yeah. I I did flew all the way out to Arizona to to have, you know, autonomic nervous system testing, you know. Right. And it was uh a huge piece of my recovery protocol. Trevor Burrus, Jr. Correct, correct.

SPEAKER_02 1:07:41

And and unfortunately, uh the people who specialize in this or just even take a special interest are not common. That's right. And so you might have to travel to find them. But uh but they they exist. That's right. And I think in your program, I'm sure you could you can have folks uh because you'll have a lot of things for these patients, but you'll also have some uh referral networks there as well.

SPEAKER_01 1:08:00

Aaron Powell Sure. Yeah, exactly. And so with that, Dr. I you know, I think it can be challenging to find those those types of physicians and and and any good resources. And that's actually why I I created the DIS, the chat disk.com. It's a it's a built-in doctor directory specifically for finding providers who understand these conditions, um, along with a full community forum and community members map to help you connect with you know others locally. You can also get you know functional medical, you can also look for you know for functional medicine doctors through the Institute of Functional Medicine who specifically list dysautonomia or MCAS as an area of focus. And honestly, you know, your local support groups on Facebook for POTS and MCAS are are like gold mines. You know, they you just go in there and say, hey, I'm in this area. What are the good doctors around and that that look at this, you know, MCAS, POTS on COVID, et cetera, and they will they will be happy to share. Um, I can assure you on that one.

SPEAKER_02 1:08:58

Aaron Powell If a patient is listening right now and recognizing themselves in this conversation and suspects they might have dysautonomia, what are some of their first steps? Any particular single most important piece of advice you can give these folks? Sure.

SPEAKER_01 1:09:12

Yeah, I think if you're sitting at home, you know, and you're just like, I don't feel well, I'm not doing well, you get to scouring the internet and say, I think I have maybe have dysautonomia. You know, how do I how do I how can I just check this before I go find all these different physicians and and and and go down that that rabbit hole? You know, one thing you can do is just uh, it's a 10-minute active stand test. You get a blood pressure cuff, uh, lie down for five minutes, record your heart rate and blood pressure, stand up, lean against the wall, and record it again at two minutes, five minutes, and ten minutes. If your heart rate increases by 30 beats per minute or more and you feel your symptoms come on, take those numbers to your doctor and get that PCP. If if that provides objective, hard data that is very difficult to argue with. Now, if you do that and you start getting dizzy, then get your don't pass out.

SPEAKER_04 1:10:02

Maybe do it with a family member at home, there we go.

SPEAKER_01 1:10:07

So, you know, my single most important piece of advice is whenever you go, just don't accept is just anxiety as the final answer. Um, I just had a recent family member actually has been going through this strangely enough right now. Um they went and saw a doctor and after their third visit, he was like, I just I think it's just anxiety. And you know, and it just obviously crushed crushed them, and but fortunately they they they have some support and we got them in into the right right place and right doctors. And yeah, I think you know your body better than any anyone else. So if you know something is fundamentally broken, keep searching. The answers are out there and recovery is possible.

SPEAKER_04 1:10:47

Tyler, that was really informative. Thank you so much for sharing your experience and wisdom on this disease. You have lived with it and you possess so much knowledge and wisdom that can help others who are struggling to get their answers. Is there anything that we've left out that you want to mention before we wrap it all up?

SPEAKER_01 1:11:06

Big big picture here. Healing is not a linear path. There will be setbacks and there will be days where you feel like you're going backwards. But the body has an extraordinary capacity to heal when you give it what it needs and remove what's harming it. Be patient with yourself, trust the process, and know that you're not alone in this fight.

SPEAKER_02 1:11:26

Yeah, I've always said, Tyler, that the body wants to be well, doesn't it? And if you just get out of the way and give it what it needs, it'll it'll it'll write itself. You know, Tyler, you went through this the thick of this with uh wonderful support from Coach Lindsay. She's a a nurse uh par excellence. She's a health coach. And just tell me a little bit about uh the importance of having a good support network as you go through this.

SPEAKER_01 1:11:48

Yeah, absolutely. I it it can't be understated. It's uh you you you feel super isolated because you, you know, again, you look like everything's everything's going good on the outside, but on the inside you're you're dying. And so having someone, at least maybe one person that can help just be there for you to be able to do that. And one person who believes you. And one person who believes you, yeah, absolutely is is paramount. And so if you don't have that person, I would highly recommend you finding someone. And and I think that's one of the reasons why these communities on you know whatever wherever you go to to find um a support groups are are so can be helpful if if you're able to find someone there that you can talk with and commiserate with, if you will, uh, to some degree, but also to kind of help push you forward um in your recovery journey. So yeah.

SPEAKER_02 1:12:42

So, you know, I see that you have a significant uh web presence on things like YouTube, uh school, and other websites. So tell me about these and how can patients get get in touch with you to to seek help with their struggles with uh dysautonomia.

SPEAKER_01 1:12:55

Oh, sure, sure. I think the best place to find me and Lindsay is dysautonomia recovery.com. Um, from there you'll see our Disautonomia Recovery Academy. And that and and really those are the hubs for everything. You can access the academy from there. And again, all those things we walk you step step by step through our our protocols that we discussed today from circadian rhythms to gut healing to mast cell stabilization. And that is actually all uh the the Recovery Academy is on the school community.

SPEAKER_04 1:13:23

We also have school S K O O L.

EDS Collagen Fascia And The Triad

SPEAKER_01 1:13:26

Yeah, S-K-O-O-L. We also have you know social links. You can find us at Disautonomia Recovery on you know Facebook, Instagram, YouTube, etc. I also wanted to highlight just real quickly that I created what's called uh chatdisc.com, which is an AI platform, an assistant specifically designed for those living with dysautonomia, EDS, POTS, MCAS, MCF, MECFS, you know, it'd be an ultimate all-in-one resource. It features AI assistants backed by you know peer-reviewed journals, and they can answer your questions with citations. And then what's coming actually here pretty soon, this is the first time I'm actually mentioning it in public with on this podcast, is a full health tracker. You can track your vitals, medications, symptoms, heat maps, and medical interactions. It actually syncs with your wearables, with like aura, garmin, apple health, apple health, and which obviously those things track your heart rate variability, which is uh an indicator for your autonomic nervous system re health, as well as sleep readiness and heart rates. So, anyways, you know, it can also generate appointment prep checklists and clinical grade AI physician reports to take to your doctor. And it's an incredible tool to help guide you through your the recovery process.

SPEAKER_02 1:14:38

So, yeah, those kind of uh Tyler, you you truly are a renaissance man. It's incredible all the things you do. So hats off to you. Oh thank you.

SPEAKER_01 1:14:49

Doc. It's when you have you know you whenever you're whenever you're as sick as as I was, and we you you go through something so so severe and you see all the all these other people that are that are really struggling, you know, it's takes you from pain to purpose.

SPEAKER_04 1:15:03

Yeah, it does.

SPEAKER_01 1:15:03

It takes you from pain to purpose. And so I put that on my heart, and I think this is gonna be a really good tool for a lot of people.

SPEAKER_04 1:15:10

You know, we always love connecting people with resources. Any other websites or organizations that might be helpful for our listeners? Aaron Powell Sure.

SPEAKER_01 1:15:18

I think obviously Disonomia International is a great one. MCAS specifically, you have the MassCell Mast Cell Disease Society at TMS at TMS4Cure.org. It's a wonderful resource, has a lot of patient information there. Um and then Ellers Danlow syndrome, you have the Ellers Danlos Society at Ellersdanlos.com. Um and it's a a lot of good resources, guidelines there as well.

SPEAKER_02 1:15:42

So I will uh list all those at McMindyB.com on the homepage at the bottom of the page under resources. So anyway, well, uh Tyler, thank you so much for joining us today on the show. It's so informative, uh, and I hope it helps a lot of people. This has been an incredibly eye-opening and important conversation. So so thank you so much.

SPEAKER_01 1:15:59

Absolutely, Doc. Thank you so much for having me. Um, it's such a joy to be here in your home again. You know, you have been so instrumental in my recovery journey. And, you know, you're an inspiration to both Lindsay and I in our journey to help others through functional medicine and wellness. You're truly a pioneer and have helped so, so many beyond just myself, but and beyond our family. And we both love the heart that you have for functional medicine and obvious and honestly, beyond that, your your heart for and you know, really just others in in general and loving kindness towards others. And so Lindsay and I are just humbly thank you for the important role that you've you've had in our lives.

SPEAKER_02 1:16:39

You know, I call Lindsay my my third daughter. I've I've adopted her whether she wants to be adopted or not. That's great. So anyway, and to our listeners, remember you can find uh the low histamine diet in my homegrown MCAST protocol at McMinMD.com in the document section. And if you're suffering, please uh know that there are people out there like Tyler who understand what you're going through and have been there done that and who believe you. So there are folks uh working hard to find answers on your behalf and uh to get you in a better place. You're not alone, and it's not all in your head. There is real hope for a brighter future, and Tyler is the perfect example of that. Well, this will about do it for part three discussion on dysonomia. Uh, thank you so much for listening. We hope that we've been able to share something with you that was interesting and helpful for you.

SPEAKER_04 1:17:26

Please do take a moment, listeners, to rate us on iTunes. The reviews make a difference. And also if you like the podcast, take a moment to tell a friend about it today.

SPEAKER_02 1:17:38

And if you'd like to reach out to me to comment on the show or to make recommendations for future topics, you may do so at drmcmin at yahoo.com. So until next time, stay curious, stay informed, keep it real, and remember small actions can lead to big changes. Take that first step towards better health. And now, can you leave us with a coach Lindsay Perlowism?

SPEAKER_04 1:17:59

Thanks, Dr. Mac. Tyler, I love what you said about the mast cells being a canary in the coal mine. And I think we can even broaden that analogy to dsautonomia as a whole. What we're really seeing is a cycle between the nervous system and the immune system and each one feeding off each other. And just like that canary signaling that there's a problem when these systems become overreactive, they're not the problem, they're the messenger. And healing begins when we stop blaming the messenger and start changing the environment it's warning us about.

SPEAKER_02 1:18:33

Well, thank you, Coach, for that pearl. And uh, this is Dr. McMinn signing out.

SPEAKER_04 1:18:37

And this is Coach Lindsay.

SPEAKER_02 1:18:39

Take care and be well.