68 - Dr David Saperstein - links in Long Covid, MCAS, Dysautonomia, EDS & more

Episode 68 of the Long Covid Podcast is a chat with Dr David Saperstein from the Center of Complex Neurology, EDS & PoTS based in Phoenix, Arizona. Dr Saperstein has been working with complex conditions for over 20 years and is now also helping those with Long Covid and post-vaccine symptoms.

This is a fascinating discussion about approaches to diagnoses & treatment, how certain conditions can affect one another as well as what can be done.

I hope you enjoy as much as I did.

Center for Complex Neurology Long Covid page

For more information about Long Covid Breathing, their courses, workshops & other shorter sessions, please check out this link

(music - Brock Hewitt, Rule of Life)

Transcript

** Transcript unchecked**

Jackie Baxter  0:00  
Hello and welcome to this episode of the long COVID Podcast. I am absolutely delighted to be joined this evening or this morning by the fabulous Dr. David Saperstein, who has over 20 years of experience in diagnosing, treating and researching many conditions, including Ehlers Danlos PoTS, other dysautonomias, MCAS, post vaccine symptoms. And now of course, we're adding long COVID to the list as well. So hopefully, we can join some dots together. So thank you so much for joining me today.

David Saperstein  0:34  
Thank you for having me.

Jackie Baxter  0:35  
It's an absolute pleasure. To begin with, would you mind just introducing yourself a little and what it is that you do? 

David Saperstein  0:42  
Sure. So I am a neurologist. And as you mentioned, them been doing this for a number of years. And up until about six years or so my focus was pretty much on more typical neurologic conditions with a focus on what we call neuromuscular disorders. So no problems with nerves and muscles, peripheral neuropathy. And in the course of doing that I worked a lot with a condition called small fiber neuropathy. And so nerves can come in different sizes. So the neurons or nerve fibers are basically like wires. They're small, medium, and large. And they each serve different functions. And over the last many years, it became more and more apparent that there were people who had problems with exclusively the so called small nerve fibers, and it caused many problems that were falling through the cracks. You'll see there's a theme and that was the first were like people who were dismissed as having psychogenic symptoms are not serious symptoms, or, you know, because the quote unquote, standard tests, the regular tests that we would use weren't showing anything. So typically, we would use something called nerve conduction studies, EMG studies, we use electricity and send a little current across nerves and measure how well the nerves carry that. And that works for most neuropathy is most nerve problems, but the problems that are restricted to the small nerve fibers wouldn't get picked up by that. And then many years ago, people discovered that we could do skin biopsies where you take a little punch of skin and process that in a very specialized way and may actually be able to see that the small nerve fibers were damaged or decreased in number. And that led to basically a huge change in how we understood things. So we were able to diagnose these conditions and realize that hey, this was a potential explanation and a lot of folks who are coming in with not just numbness and tingling but fatigue and dizziness and lightheadedness because small nerve fibers play a role in sensation but they also play a role in the autonomic nervous system are play important roles. And you know, dysautonomia for all of you with long COVID I'm sure that all buzzword is been coming around. And so a lot of the patients I was seeing were having dysautonomia, which led me to start doing testing of the autonomic nervous system and started seeing more patients with pots, Postural Orthostatic Tachycardia Syndrome, and then led me to start seeing patients or, or appreciating them. A lot of the patients I was seeing had something called Ehlers Danlos Syndrome, a condition, genetic condition of their connective tissue where they were more flexible or hyper mobile, and realize that there was this nexus between EDS and small fiber neuropathy, and dysautonomia. And then, you know, the more I learned about that, the more I started seeing those patients, again, a group of patients who, by and large, were being told that, you know, all their tests look good, and there was nothing to explain their problems and it was likely just anxiousness or, or other issues like that. And, you know, we could realize that there are a lot of people that we were able to definitively diagnose, and more importantly, you know, think, you know, have ways to help them. And then I had to learn about a lot of these different conditions because they impacted these disorders so much. And another one that was very important is something called mast cell activation syndrome or dysfunction of mast cells, which I think is come up on previous podcasts or probably something we'll go into more detail on. And again, that's in that whole mix. And, you know, I've been working on that in the last several years. And then, you know, lo and behold, a lot of these conditions turn out to be important facets of long COVID. So, obviously, before COVID There were no long COVID specialists, and then you know, certainly now there are people will work with long COVID patients. And they're no a heterogeneous group. Some of them are specialists who are focusing on certain parts of it. So, you know, their neurologic symptoms are very common in long COVID. So neurologists are looking at it and trying to figure out why that is. GI symptoms are very common, so gastroenterologists are looking at that. There may be blood clotting issues, hematologist joint issues or rheumatologists. But it's the same or similar problem to the whole EDS, dysautonomia, small fiber neuropathy mast cell is that if everybody's in their bunker, you know, they may be missing the larger picture. So I like to feel that clinicians like myself who have been working with these diseases before COVID, they're already, you know, in the mindset of realizing that there's complicated issues in their interconnecting, and you need to cross disciplines to get the full picture. And you need to realize that a lot of standard tasks, quote, unquote, are going to be not helpful or gonna be normal. And any, you have to dig for the answers, you have to listen to what your patients are saying. And that was, I guess, a very much long answer. Tell you a little bit about myself.

Jackie Baxter  6:25  
That's fine. It's absolutely fascinating. And it's another reminder as well, isn't it that, you know, all of these conditions, they all existed before COVID, and before Alon COVID came along, so, you know, there is stuff out there about them already. So somebody who, you know, once you realize what dysautonomia is, for example, that was a big thing for me, you know, realizing kind of what it was and what it meant. And then, more importantly, what I could actually do about it, because like you say, a label is only useful insofar as you can then treat it, isn't it? Yes. But, but also this, the way that they all interplay is absolutely fascinating, isn't it?

Unknown Speaker  7:09  
Oh, absolutely. It's been, it's been and continues to be a process of, you know, I'm always learning new stuff and interacting with other colleagues who come at it from different perspectives. And that's been invaluable, you know, physicians spent years and not just with training, but then years of their careers, you know, by design focusing on a very small area to become expert in it, which is obviously important and valuable, but then I spent years specializing and then sort of spent the last few years D specializing but not really, I mean, but broadening and you know, for neurologists, to be thinking about, you know gastroenterology local issues or you know, hives and allergic reactions. I mean, the average neurologist would think that you know, that's not anything that should be your would be in their lane and, you know, my current work I don't see how I could really do without, you know, crossing the lanes because there aren't these nice clean lines in any given patient. Well, those symptoms are dysautonomia, those symptoms are mast cell, those symptoms are our gastroenterology, bowel problem. They're all they overlap. And certainly there's, there's roles to play in for gastroenterology specialists and other you know, allergist and so forth. But then a lot of them you know, are just in their nice cleanly defined bunkers and you know, you know, it doesn't matter who the specialist but you need somebody who can kind of put these things together and not afraid isn't the right word, but sometimes not be afraid or concerned about what the symptoms are, what the issues are just the patient doesn't care what specialty help is coming as long as long as they're getting it and that's the key. You know, I'll have patients referred to me from a different specialist and they say well, like from an allergist say oh you need to see Dr. Sappers team because those symptoms are dysautonomia, and I'll listen to their symptoms and say, you know, I think treating your mast cells more aggressively is going to be the best way to help what's going on but they just came from, you know, theoretically the mast cell doctor so again, it's it I have a much broader toolkit than I used to and you know, the million dollar question is Is the toolkit that we use for these disorders, dysautonomia, eds, pots mast cell? Is that the right toolkit for long COVID? I mean, we certainly that seems to be the case and a large number of people and But, you know, do we need slightly different tools? Is it Is that not the whole story? You know, Is it as simple as saying, you know, people with long COVID are developing issues that we've seen before COVID. So we've seen people develop pots and dysautonomia after a virus or have other kinds or after other triggers or mast cells being triggered. Again, I think so many things. So but and we always again, need to keep our eyes or our minds open to, you know, other things. COVID virus has proven to be a very formidable foe and very unique compared to most other things we've, we've faced, certainly in recent years in medicine. Yeah, and

Jackie Baxter  10:45  
this kind of like, overview that someone like yourself has where you can see all of these different sort of sub areas, if that's even the right word, but also having the specialties within those kinds of sub areas, I think, is maybe quite well useful, I guess, is maybe the right word. Yes. Yeah, it's interesting, you were talking about the sort of the different conditions, I guess, is the right word. So you know, things like your pots and your dysautonomia, and your M casts and, you know, all of these conditions are different. And you know, everyone's experience of them is so different as well, you know, and then there's obviously all these links between them. And how do you differentiate between them? And I suppose also, is that important to do that? Because I mean, again, thinking about my own experiences, to start with, it was impossible to see the wood for the trees, because there was so much going on. So it do you need to kind of, is it to sort of find a way in maybe to start with?

Unknown Speaker  11:47  
Yes and no. So obviously, the best starting point is to start at the beginning and figure out what is or what isn't going on. And, you know, for a lot of individuals, there were issues present before COVID. Not always, but so the first step is we see that and I think one of your previous guests was talking about that, where she had stuff going on, and then COVID saw the triggers, and we see that and so we're always starting childhood. And, you know, we may find that people have issues that suggests that there was some mast cell disorder issues, you know, it wasn't a big deal, but it was like, Yeah, people always had a sensitive stomach or reacted to certain things or would get hives or rashes, easily as a child. You know, people may have been prone to lightheadedness, nothing that got in the way of things, but or even some of our patients, you know, fainted when they were younger, and just like, Well, I was dehydrated, or it got attributed to different things or, you know, childhood history of migraines. And then, you know, they they function very well, they live their lives, they did what they wanted to do what they needed to do, and then something happened, and things changed. And certainly COVID infection, or COVID vaccine can be that something that that flares, these diseases, we're not quite sure why. And, you know, there are other individuals where you can't tease out any prior, you know, no evidence of it, does that mean that they have a different story or a different way of coming to it? Or they had just a much more subtle case? Again, that's where we're not sure. And we certainly see variability heterogeneity in this. So like I said, my approach is two pronged, again, rounding up the usual suspects, as we sometimes like to say, because we often find those, and again, you know, is there an underlying connective tissue disorder like Ehlers Danlos Syndrome? Because then we may treat that in different ways, or that may lead us to look for other complications or other problems, you know, is there dysautonomia? And if so, defining that, in the sense of, you know, is it pots? Is it something different? What sort of subtype of pots? Is it? Because, again, that's going to potentially help us, you know, figure out the best ways to treat that. And again, does there seem to be a big mast cell component or not. And so each person, how we tackle it is going to depend on a number of factors. I always tell people, I think of it as sort of a control board with different knobs. And I'm still analog. And, you know, we know that turning one or more of these knobs potentially is going to be the key to helping but we don't always know. And so, you know, we could just start turning knobs, but based on the certain picture that that person is presenting with, we say, well, it makes sense to start here and we start turning a knob or so and we may need to turn that back. We may need to try a different tactic, but You know, it's zeroing in on how to optimize, you know how they're doing, getting getting things under control. And then, like I said, just always realizing that we don't want to get tunnel vision always realizing that with post COVID, we may need to add some jobs to the control panel. So far again, most people, most patients, it seems to resemble dysautonomia, and mast cells seem to play a role. But again, it's not always the case. And, and lots of work continues to go on to get to the bottom of the Von COVID.

Jackie Baxter  15:33  
Yeah, I love your control board analogy. I've heard a lot of people sort of describe it as bits of a puzzle. And it really is, isn't it? You know, it's trying to slot it all together. And no, two patients are ever going to be exactly the same, are they? I guess,

Unknown Speaker  15:50  
yeah, it's one of those things were in a big sense, a lot of them are very similar. But obviously, you know, the details are important. So that I mean, that's the good news is that, you know, it's very similar are the themes are, so it makes it, it's important that they are because then it's manageable. And so you, as I said, when I first started doing this, I saw the segwayed, from focusing on other diseases to seeing more and more individuals with pots and EDS and mast cell. And at the beginning, I'm like, What am I doing, you know, why am I a neurologist dealing with these issues. And then I realized two things is like, well, now having done this a bit, I've realized or the, you know, have a little list with my new patient. And I'm like, Alright, I know that I'm going to ask them about these symptoms, because there's a very good chance they're going to, we're going to have them. And I'm like, go, I've got my approach. I figured it out. And then I realized number two, well, very few other people are doing this. So you know, it's figured it out, or started to figure it out. And no one else is, though, I'll just keep running with this. And so again, it's nice that a lot of patients will have similar themes. And it's reassuring for them, because they've so often been told that their symptoms are odd or crazy, or they're crazy, or their symptoms, you know, they shouldn't be having those symptoms, whatever that means. Right? They are. And so I think it's, you know, certainly reassuring and relief to the patients to hear that. But everybody's different. We have a new medical assistant who started with us, and so she's in training. So we brought her in, you know, yesterday, I'm like, Okay, start by sitting in and with these patient encounters and seeing, and we, you know, we had a patient first thing in the morning, and then the next patient, I'm like, Oh, this will probably be pretty similar. And it was very different. So again, everything similar, but different, which is great, you know, keeps it exciting and challenging. But you don't want everything to be too exciting or challenging, because then you don't know what to do. Again, the good news is we have a framework scaffolding of where to start and then exactly, it's always going to be customized, you know, for each person, or needs to be or should be.

Jackie Baxter  18:18  
Yeah, definitely. And yeah, and you mentioned some of these conditions to things like Ehlers Danlos, preexisting pots, dysautonomia, M casts, and then obviously, long COVID, which may or may not be some sort of collection of all of them plus or minus other things. Are you seeing any kind of common themes between them? I know, that's probably a really wide open question.

Unknown Speaker  18:43  
Yes. I mean, as has been pointed out, for people I've read about and talked about, you know, in long COVID. Number one, there's a lot, a lot of different symptoms that can happen. That includes, you know, fatigue, brain fog, dizziness, heart racing, shortness of breath, chest pain, gastrointestinal problem, um, this muscle aches, headaches, don't want to leave anything out. But those are common ones, especially coming on abruptly and somebody who's not accustomed to have those things. And again, you know, the trouble that people run into, you know, and seeing doctors and being in the medical system is, well, those, you know, each one of those symptoms is or what we call nonspecific. So, I mean, yeah, there are many things that can cause it, but when you see many of those are most of those together and they're coming on abruptly or coming on after trigger, then again, you know, it fits a pattern and so, you know, we're seeing those same sorts of symptoms that we've seen along COVID we see with sometimes it's hard to know what to call these patients long COVID Is is easier because we can pin it on the COVID I mean, we it If somebody develops pots, you know post flu, we don't call them along flu or we say they have pots. But then the problem with pots is, while there are some patients who, quote unquote, just have pots quite a lot of them have these other factors, whether they are their providers realize whether or not they have mast cell activation and so forth. So, some of us who do this call patients, the trifecta of hypermobility and dysautonomia, and mast cell, or there's the so called Penta ad patients have dysautonomia, and hypermobility and mast cell and GI symptoms and immune issues. And then there's even some people have added to that. And they have septet and seven things where I mean, you you could add it on and on again, the theme is, is that there's some thing about certain individuals, we think, who are genetically predisposed to potentially react poorly in certain ways. So we think that most people can get the flu or have COVID. And you know, they're sick at the time, but then they come out of it without chronic dizziness, lightheadedness, Heart racing. And we think there's something about people made, you know, some of them, or many of them, are these people with Ehlers Danlos, or other genetic issues that make them hyper mobile, that they seem more susceptible to having these problems develop? Again, we that's what we think, or many of us think we don't know, you know, we still don't know to what degree there's, there's potentially an autoimmune issue. So do these viruses are particularly long COVID? Or can it trigger an autoimmune response? And is that why there's dysautonomia and, and mast cell dysfunction, these other issues and again, as I said, fortunately, research goes on and long COVID is, has put a lot of wind in the sails of, of that research effort. because prior to that, you know, while there's been research, it's been on a small scale, and it hasn't had a lot of tension. You know, another condition that gets talked about a lot is MECFS, or myalgic encephalitis, chronic fatigue syndrome, which again, for decades, you know, individuals have been suffering from and again, this same paradigm of seemingly post viral or post infectious or at least, or some sort of an illness or injury serving as a trigger. And then, you know, in 10 years, there was the appreciation that a lot of patients with MECFS had dysautonomia had mast cell activation syndrome, a good subset of them had EDS. And so it turned out that a lot of MECFS patients had these other conditions, which was great, because then we could sort of break it down, as I said, and focus and treat those conditions. But not all do. And so a lot of people say well, is Squonk COVID, just is basically MECFS being triggered by COVID. And, again, it gets tricky, because you have to give things names, otherwise, it's too chaotic. But on the other hand, you need to be careful when you name something, because you don't want to get too hung up. And I always tell people that the minute I think that I understand that things perfectly, then I need to be concerned because, you know, you need to have certain theories, and you need to operate with those. And so when I'm in the office talking to a patient and explaining why I think all of this happened, you know, I'll I'll give them an explanation of a theory of how animal mast cells do this, and they're affecting your sympathetic nervous system in this way. And this is because of A or B, you know, and I believe that to be true, but I also realize that, you know, there's plenty of things that we believe to be true that you know, that a few years later, we realized, either, you know, we didn't have the full picture, or you know, it's not, some things about that are incorrect. And so you don't want to be paralyzed. And that's what I think happens. A good part of why a lot of patients don't get help that they need or diagnoses is, is that the doctors often you know, if they don't have all the facts, just feel like they can't proceed. So you don't want to be paralyzed by not having all the answers but you don't want to, conversely, go off the rails and do things just sort of on whims or jumping around based on on loose theories. But everybody sort of has to figure out where that happy medium is, is between being comfortable enough with the information we have and doing things you know that we earnestly think you're going to help people without, you know, again, guarding against believing our own our own property. And to the point where we may not be open to better or different answers, or we're, you know, sort of get hung up on or stuck on things. So, again, you would give things names and then move on but realize, you know, it's operationally how we discuss it amongst ourselves as clinicians, how we discuss it with patients, and then, you know, having that parallel, doing pragmatically, you know, diagnosing and treating people and then, you know, thinking about how to improve that process to make sure we incorporate new thoughts or, you know, try to find new answers, if that makes sense.

Jackie Baxter  25:38  
Yeah, it's this, like, I guess it's a delicate balancing act between treating and helping people with what you do know, and what you know, works, while also being open minded enough to sort of keep your ear to the ground for other stuff, I guess, isn't it? It is?

Unknown Speaker  25:55  
Yeah, I mean, it's been a process for me. Um, but, um, again, I think a lot of, you know, physicians, you know, they're used to being smart and having the answers and, you know, they went through school, getting good grades, they went through training, you know, answering questions and having the answers. And obviously, those are all good things, and you want to have good answers for your patients. But then medicine is an art to practicing, of, you know, balancing the science of it, and the sound judgment of it, but then also figuring out how they help people, you're never going to have all the all the facts and all the information, so you have to be comfortable treating it.

Jackie Baxter  26:39  
Yeah, definitely. I mean, we're sort of talking about long COVID, I suppose, here, but also the whole breadth of everything else, because as we've just been discussing, it's all very much related. But you know, when non COVID, as a thing, has only been around for a few years, because, you know, the virus itself is new. And as you mentioned earlier, we've also been seeing post vaccine symptoms as a result of well, the COVID vaccine. Are you seeing any kind of interesting patterns, I suppose, between the two of them, compared to what came before at all

Unknown Speaker  27:17  
I have, and so much has been published and written about, you know, dysautonomia pots happening to individuals after COVID, or after COVID vaccine. And there's not been, by and large a distinction between pots, you know, post COVID, or post vaccine pots and pots from, you know, not related to COVID are not related to the vaccine. And maybe there isn't a difference. But I've been struck by the fact that the long COVID individuals seem to be different. And what do I mean by that? So Potts has a lot of symptoms. And again, everybody's different. And the two main themes are being lightheaded, particularly with being upright or standing and getting racing heart rate. To me, quite often, the post COVID individuals or the post COVID vaccine individuals that I've been seeing, seeing a much more prominent symptom is racing heart rate. So they're, they're describing my heart goes really fast, and, and it's uncomfortable, and to a much lesser degree, they're experiencing lightheadedness, and conversely, you know, unrelated to COVID, the POTS patients I see, traditionally, again, they're more noticing trouble tolerating being upright. But again, it's hard because they, you know, there's subtle distinctions they experience racing, heart rate, and so forth. And if you tested if you do Tilt Table tests or other tests that we do the measure, you know, it looks the same. Their test results have been looking similar as is as far as I can tell from looking at the literature and looking at my patients. And not everyone agrees with that, and other dysautonomia specialists aren't making that distinction. But again, that's something that I'm, you know, trying to figure out how to get a better handle on but I've noticed that I don't know what it means, but it's different. And it just may be that post COVID is unique. And because we're seeing patients, you know, very soon after the onset of symptoms, I mean, one of the very negative or bad things about POTS is again, how long it takes somebody to get diagnosed. So certainly as a pot specialist, you're usually seeing people after they've kicked around, you know, or they've been kicked around or they've they've bopped around the medical system for years. And so maybe if I had spoken to them, you know, within a month, a couple of months of the onset, maybe Maybe they'd be describing their symptoms similarly. So maybe it's just more of, you know, there's an acute onset phase. And then there's the more longer term and intense we haven't had a very long term with post COVID yet. So that may be it. But again, it's I don't know what that means. But it seems to be different. And that's been part of the theme, and as I've alluded to, is that our tests aren't as good as we would like them to be as good as we need them to be. So, I mean, you know, our diagnosis of pots is pretty unsophisticated by and large, and you know, you lay somebody down and stand them up, or you're tilt them on a table, and it's like, what's your heart rate? You know, what did it go to when you're upright versus when you're flat, we also look at blood pressure, and so forth. And then it's like, if it a heart rate increases above a certain amount, boom, you're diagnosed with pots, I mean, there are other things we can do. And in our practice, we use special ultrasound and measure blood flow to the brain that gives us some supplemental information that's helpful in some cases. But again, at the end of the day, we're not we're does things are testing isn't sophisticated enough to make these fine distinctions. Or again, nope, nobody really knows. We know parts of it, of why pots happens and why different aspects. But in a given patient, we're never really sure how these parts come together. And it's it's definitely the same thing applies to long COVID. But so again, that's just an example of recognizing that dysautonomia is causing or can cause a lot of long COVID, symptoms of fatigue, shortness of breath, anxious feelings, GI symptoms, temperature, regulation, problems, etc, just as we would see in a Potts patient. And so at least, we're not just starting without any framework, you know, we can at least say, Okay, what would we do for pots, and we do those things. And fortunately, they help a lot of people with long COVID. But in the cases where people don't respond as well as they should or aren't responding in the same way, again, that's where it's important to keep our antenna open to will, there may be differences, and, you know, how could we be treating things or treating people differently? And, again, it's still a work in progress. So the two things that I found the most striking is one, how often does on the gnomon M cast seems to be an issue in long COVID. And but then the other is straight, noting that the symptoms do seem different. And in trying to figure out why that might be.

Jackie Baxter  32:43  
Yeah, that's really interesting, isn't it? Wow. So I guess this is going to be another incredibly wide open question. But I would love to talk through some sort of management and treatment, sort of options that you might offer or suggest to patients.

Unknown Speaker  33:02  
Sure. So, you know, as I mentioned, if I'm seeing a patient in my office, I'll start by figuring out, you know, does it seem like, you know, they have a pre existing condition of joint hypermobility of symptoms suggestive of M casts, or even dysautonomia symptoms, and then that got that blossom, or somehow got flared up? And then again, the treatment is going to be focused on the dysautonomia in the mast cell activation syndrome. Again, keeping the eye out are there other some of the other theories? So the this is dysautonomia, and mast cell activation syndrome, similar to what happens with other infections with other triggers that we've those of us who have been treating diseases have been seeing for years, or, again is Is there something different about the COVID virus? Is the virus having ongoing effects? Is there ongoing inflammation and so again, much work continues to has gone on and continues to go on looking at cytokines and other things that we can measure in the blood are there these so called micro clots, small blood clots that are affecting small arteries and causing many of the post COVID symptoms? And then one would wonder if that is true for COVID? Well, is that actually been playing a role in the patients we've been treating pre COVID and pre COVID pandemic? Again, like I said, I definitely want to keep an open mind. And so if patients are an outlier, then maybe they need to be seeing a hematologist or somebody dealing with blood clotting and so forth. So we're always again, we want to make sure we're not just doing a one size fits all management strategy, but to an answer to your question. In my experience, most people are going to benefit or it's appropriate to do I try treatments for dysautonomia, and mast cell activation syndrome. So as other guests on your show talked about, you know, there's initial steps for pots or disana Noumea, which are being well hydrated, increasing salt, I would add, you know, getting adequate rest, you know, physical exercise, physical training is in the component, but that's always a bit of a double edged sword or catch 22 is like, well, you have to be at a certain place, have to be well enough to be able to do that. And sometimes, again, medications can help again, particularly with the long COVID patients where that heart rate is going really fast. And it seems that that's being driven by some inappropriate overactivity of the sympathetic nervous system. So you know, using medications that can quiet that down and slow the heart rate. But then, in my experience, most patients are quite a lot of patients who have overactive sympathetic nervous systems. mast cell dysfunction plays a role I was saying before, it can get really hard to make nice clean lines between it. And I think, you know, mediators, chemicals that the mast cells can give off, can stimulate the sympathetic nervous system and over activated and then but if your sympathetic nervous system is activated, well then that causes or can cause mast cell activation. And so you might think of it as potentially this feedback loop. And so oftentimes, you have to treat both parts of that loop. Because if you leave one side, to its own devices, it can trigger the other side, even if you're, you're doing all the right things, in theory to try to treat pots. You know, if the mast cells are running loose, they're going to potentially keep flaring up, or vice versa, if if you're stabilizing mast cells are doing things that should be good strategies for mast cell activation syndrome. If you've got sympathetic nervous system that sort of bursting out or doing things, that flaring up the neck and do it, so the mast cell side of things, again, getting back to it very, can be very hard, we don't have the tests that we would like. So there are certain blood tests or urine tests, where we can see that there's elevated histamine levels is elevated, what we call MIDI, there's other chemicals that the mast cells spit out. And we can see that there's elevated levels of those in the blood, others elevated levels and like a 24 hour collection of urine. Sometimes we can even see that there's too many mast cells, like in in the GI tract, if somebody has a scope and endoscopy, and they get biopsies that we can quote unquote dinos in certain ways and see that there's more than the number of mast cells that would be expected in the intestine, in the colon, and so forth. But a lot of times our diagnosis is sort of presumptive just based on on the symptom. So if somebody's having a lot of GI symptoms, if somebody is prone to getting rashes, or their skin is sensitive, if they're sensitive to smells, or sense or so forth, so a lot of times and a histamines. So, again, I don't know what you have in the UK, but I mean, in terms of names, I mean, so like is there attack or a leg or or Claritin, fexofenadine or Cetirizine or loratadine. And again, there are other brands, but these so called second generation histamine blockers or anti histamines or they block what we call h1 receptors, which is one of the more common receptors that histamine binds to mast cells release histamine. Histamine triggers mast cells, that's a part of it. But there's a bigger picture do it. But some people respond very well to histamine blockers and we find that for some reason, the dosing often needs to be higher than you like a usual dose for the second generation antihistamines, which are usually non sedating is one a day. Whereas we find that twice a day sometimes seems to work better. And even though they're long acting, and you quote unquote, should only need to do some once a day. We find that yeah, if we do it twice, so we do one in the morning and one at night. And then we use so called histamine two blockers, like Ranitidine famotidine. And traditionally those medicines are used to treat too much stomach acid or heartburn. Because one of the roles if you block histamine to receptors, one thing that will happen as you can decrease acid production, but there are histamine, two receptors throughout our body, there are histamine to receptors in our brain. And we found that if you block not just the h1 receptors, but the h2 that you can get a bigger reef effect. So again, we may do a high dose of Ranitidine or from other Dean twice a day. 2040 milligrams of codeine, for instance. And, you know, the h2 blockers interesting, because they've come up in the COVID world. So both with treating acute COVID in terms of helping with that cytokine storm, which again, many people think has to do, you know, mast cells play a role in that. And then certainly in long COVID, and then famotidine are these h2 blockers may play other roles in terms of interacting or affecting the immune system and so forth. And then there are mast cell stabilizers. So if somebody's mast cells are overly reactive, you know, mast cells, their normal job is to be sort of the first line of defense against foreign invaders trying to get into our body, so they're stationed in our skin and our nasal passages in our airways in our GI tract have quite a lot of mast cells in our GI tract. So a lot of GI symptoms, I think stem from that. And there are medications like cromolyn or Katana fin that can help stabilize the mast cells, there's a supplement called quercetin, which no prescription is needed. It's a natural component, an antioxidant that's in fruits and flowers. And that can be a good mast cell stabilizer, although oftentimes the dose needs to be high. So you know, supplements may be 250 500 milligrams, but sometimes, sometimes they'll help but sometimes you really see better effects when it when it's higher, even though it's a supplement it, it can cause issues. I mean, overall, all of these mast cell stabilizers are generally safe and well tolerated and in the scheme of things.

Unknown Speaker  41:41  
Of course, it in the supplement can interact with like thyroid medicine or other medicines you always want to check with with your health care provider. But that's something that again, people can take there certain cocktails, of using a histamine one block, or histamine to block or some one or more mast cell stabilizers. And that may not be the whole story. But some people find they start with that, and, you know, it helps helps with GI symptoms, helps with brain fog helps quiet down the sympathetic nervous system, and then, and then people can build from from there. But again, I usually find that something to blunt the effects of that sympathetic nervous system are gonna at least help people feel better, I mean, it's the part of your body that's telling you something bad is happening, or preparing you to flee or fight, if that's just always or frequently being activated, that's going to in and of itself, just be very exhausting and uncomfortable. And, you know, quieting that down can go a long way towards that. And, you know, I've talked about medications and other things. And, you know, there are other ways of doing, you know, behavioral ways of balancing the autonomic nervous system and quieting down the sympathetic nervous system. So, meditation and other ways, and there are certain programs that many patients benefit from the so called neural retraining programs where they can sort of help if your sympathetic nervous system is overactive, it's triggering, but there's not wolves at your door, so you don't need to flee, or so forth, then, you know, it's kind of like a broken alarm that alarms constantly you playing, but you know, there's no fire, you know, it's a fire alarm, there's no fires over within into broken alarm, then obviously, you'd like to fix arm so it shuts up. But until or unless you can do that, then at least realizing, okay, there isn't a danger, this isn't an alarm that I need to respond to, and then figuring out how to block it out, so to speak. And so that's what a lot of these, these programs are. And there's different ways of doing that. And so it's sort of coexisting with these signals. I mean, it's not optimal, we'd rather turn them down or figure out what's driving them. And sometimes we can, and, you know, everybody's different, and we're not sure why we have more or less success. But again, getting back to that, that toolkit, you just want to have as many strategies as you can, and at least, you know, try to help people get better. And, you know, we talked about everybody's different, it's always fascinating how, you know, and one patient, we tweak just a little bit and they do wonderfully, and then other people, you know, it's a lot harder, but, you know, sometimes you think you're going to need to fix all of these problems before you're going to get them doing much better and sometimes to pleasant surprise, you don't need to and many people do get better and I guess we we don't talk about that enough, I don't think and so, and as you said we're only just a few years into this, but um, you know, people with long COVID can and do get better with that with just the passage of time with Are there anything specifically be going on? Again, we don't know how to predict. We don't know who we don't have, you know, the tests or the algorithms that we need. We don't want to just sit back and count on that. But we don't want to lose sight that there's hope there too, that that people can and do get better.

Jackie Baxter  45:18  
Yeah, I think that's a good thing to really bear in mind, because I think we kind of only hear the bad stories, don't we? And we, you know, in support groups and everything, it's all the people that are still unwell. And I think it's very easy to lose track of the fact that actually there are people that have got better, they just don't want to hang around in support groups anymore.

Unknown Speaker  45:40  
Exactly. Yeah. That's the support group phenomenon.

Jackie Baxter  45:43  
Yes. Yeah, absolutely. I think you mentioned research a little bit earlier. And I would love to just know if there's anything ongoing that you think is particularly kind of interesting or useful in this field, whether it's stuff you're involved in yourself or other ways.

Unknown Speaker  46:00  
Yeah, I mean, I think one of the best things, if you will, about research is that it's looking at different avenues, which, again, is always important not to have all your eggs in one basket. And so, you know, as is often the case, we start out learning pieces of the bigger picture, and then we have to see how those puzzle pieces fit together. But, you know, things that have been interesting is, you know, looking at people's response, you know, doing exercise testing and seeing how their oxygen uptake is and what happens, you know, how their metabolism is and some groups that have been looking at that and finding some interesting things and long COVID And, and finding that certain treatments or medications can get at least in the in the lab setting help that. You know, it's been interesting to see, I guess, certainly with my background and doing a lot of work with small fiber neuropathy is seeing how prevalent small fiber neuropathy is, and people aren't COVID When you need to ask for it and, and what role again, that seems to be playing a role in terms of the dysautonomia. The small nerve fibers just play critical roles in regulating our autonomic nervous system. In small fiber neuropathy, there have always been this question of what component or to what degree autoimmunity? Does the immune system turned against the nerve, what role does that play, certainly research on that continues to go on because, you know, we have medications, we have strategies for targeting dysfunctional immune systems dysfunctional in the sense of you know, they're being overactive or turned against us and if we can treat that and that may be a very effective way of helping people I think just continuing to try to figure out what's going to be useful in terms of understanding this people and what's noise you know, there were many different blood tests that can be looked at and cytokines and so forth. And I think those are flashy and get attention and again, I'm not dismissing the significance of those but again, only time will tell which of those are going to be important and and are going to be valuable for helping us understand diagnosis and treatment. And so that's sort of what I what I look to in the research you know, research that if I had my wish list of hoping for answers to instead figuring out ways and still scratching my head and then hopefully others will have ideas you know, of, as I mentioned, you know, figuring out is long COVID dysautonomia different from other forms of dysautonomia, and you know, how we can sort that out and how that would change or might change how we treat it and then maybe we'll find better ways of breaking down dysautonomia in patients who don't have it from COVID. So there's always heterogeneity there, and maybe there are people you know, if tachycardia racing heart rate is a bigger symptom, you know, why is that? What is that telling us and so maybe there's better ways that we should be treating not just certain long COVID patients but certain pots or dysautonomia patients who have their pots and dysautonomia for other reasons. Yeah.

Jackie Baxter  49:37  
And it's fascinating, isn't it? I mean, like, I mean, I'm not a scientist or a medic in any sort of a way and like, I feel like I have my research wishlist. So I can't Yeah, I can't imagine how someone who actually understands all of this stuff like yourself, must be so much bigger.

Unknown Speaker  49:54  
I mean, as you can probably tell, my approach would be to like, you know, take the big problem and just try to break it down into recognizable and bite sized pieces and sort of, you know, tackle what we can and then continue to try to figure out how to tackle the stuff that doesn't respond, like we hope it was or that we don't understand as well. And I've, I've found that to be a useful strategy for for dysautonomia for mast cell for EDS writ large. And, again, I think the same applies to long COVID. I guess a question I get often get asked is, you know, advice for patients and how to find clinicians who can help them and that, that is hard, because it's the people who deal with this or the thing, we come in different boxes and shapes and sizes and labels and settings, you know, whether it's in a private practice or an academic center, or, or whatnot. And so I think social media, you know, it gets a lot of knocks, but I think it's been a valuable way for individuals to learn about these issues and learn about who, who potentially can help. And, again, you know, long COVID centers are important, invaluable, but they're not all the same. And like I said, some of them are just major medical centers that have just run the patients through and if you have gi problems, you'll see the GI doctor, if you have neurologic problems, you see the neurologist, if you have breathing problems, you see the pulmonologist, etc. And but then it's that same old problem of each specialist is looking at their prison with their tests, which may lack the ability to see the full picture. I mean, obviously, again, there are going to be patients who have a heart problem who have a lung problem. Yeah. So it's important that we don't, again, assume it's dysautonomia, when it's when it's a more distinct problem, and that we need those providers. But all too often, our experience has shown that a lot of individuals again, they're all it's just another circumstance where they get run through the tasks that the cardiologist knows to run in. Everything's normal, they their MRIs are normal, and their neurologic examination is normal and whatnot. And so you need someone whoever that is, or whoever that team is to sort of put the pieces together. And again, nothing's perfect. Social media is not perfect, but I think it does provide a forum for people to try to get that information.

Jackie Baxter  52:31  
Yeah, absolutely. Well, thank you so much for joining me today. It's been an absolute pleasure chatting with you and sort of sharing your experiences of well past 20 years actually. I've learned so much and I hope everyone listening has to so thank you so much. My pleasure.

Transcribed by https://otter.ai