88 - Dr Tania Dempsey - Chronic Disease Expert

Episode 88 of the Long Covid Podcast is a chat with Dr Tania Dempsey, expert in chronic disease and a master of finding the root cause of "mystery illnesses"

We talk about her experiences both before Covid, and since with Long Covid patients.

www.drtaniadempsey.com

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(music - Brock Hewitt, Rule of Life)

Transcript

Jackie Baxter  
Hello, and welcome to this episode of the long COVID podcast, I am delighted to welcome my guest tonight, Dr. Tania Dempsey, who is an expert in chronic disease, autoimmune disorders and mast cell activation syndrome. So I'm really excited to dive into all sorts of things this evening. So a very warm welcome to the podcast. 

Dr Tania Dempsey  
Thank you Jackie

Jackie Baxter  
So to begin with, would you mind just saying a little bit more about yourself and what it is that you do?

Dr Tania Dempsey  
Sure, not to talk about this for too long. But I started my journey as a general internist, made my way into really wanting to understand patients better and wanting to look at them as a whole person, and sort of transitioned to what I would call now maybe it's called integrative medicine. I struggle with that term for a lot of reasons. And that's another conversation. But I think really, what I was doing was integrative medicine, and trying to, again, look at root causes and trying to understand patients. 

Because it was frustrating patients who had all these complaints, that really the modern medical model for disease, you know, is really about, you know, a pill for a symptom, right, patients have a problem, we treat the problem. But there's always a reason for that problem, there's always a reason for the patient being in that position, and that, you know, with those symptoms, so I always wanted to understand the patients better. And so I made my way into this sort of world of integrative medicine, and then really transitioned to, at least I still do integrative medicine and functional medicine. 

But to me, it's really about trying to put all the pieces together for the patients who have a long history of complex, multi system issues. So meaning that they have multiple conditions that they've been diagnosed with, multiple symptoms in different parts of their body, there's a real complexity to it, they've been to a lot of people. And I see myself as a as a sort of a facilitator, trying to put all the pieces together for them, and try to help them understand what the root cause or causes are. And then obviously, find a treatment path for them to address those things. 

So that's really what I do. I don't think there's a term yet for that, like my practice is called in Center for Personalized Medicine, because really what it is, it's a personalized approach to each patient. 

And so as I'm sort of, you know, going down this path of helping patients, I've, you know, I'm really a avid reader, researcher, I always want to know more, and I always question everything. And so inevitably, I really sort of discovered, you know, the, this disease process or syndrome called mast cell activation syndrome. I didn't discover it, I didn't create it, but I learned about it, and then really, really become an expert in it. 

And so that then sort of transitioned to, you know, the state that we're in with long COVID, or post vaccine illnesses, and other things that sort of tie in, in my understanding of mast cell activation syndrome. So, I struggle with saying that I'm an expert in that - I'm really an expert in trying to figure out the patient's root cause. I'm an expert in trying to figure out how to help the patients from whatever they're dealing with. But this has become, unfortunately, an epidemic. And so it is a big part of my practice now.

Jackie Baxter  
Yeah, I mean, that's fascinating, what you were just saying about the sort of the multiple diagnoses. And I can't remember who it was, but there was someone that I spoke to that said, a diagnosis is only useful if you can do something with it. And you know, you can have like, all of these different things where someone says, Well, this is wrong with you, and this is wrong with you, and this is wrong with you. But if you can't actually find a treatment path, or you know, something to help from that, then it's not really worth anything, is it? 

Dr Tania Dempsey  
Exactly

Jackie Baxter  
So, yes, it sounds like we need someone like you, that can look at all of the different things and go, right, why don't we try this? So yeah, it definitely does seem to be a bit of a failing of kind of modern medicine, this ability to look at the bigger picture, isn't it?

Dr Tania Dempsey  
Yeah. I mean, so many patients have this long list of diagnoses, you know, and I guess in the sort of allopathic traditional medical model, they just look at that. I guess there's some comfort when a patient let's say gets goes to a doctor's office or an ER, that the doctor sort of thinks, the practitioner thinks, oh, okay, I understand the patient because I understand the laundry list of things on their diagnoses list, but the reality is that, that doesn't say anything about the patient. You know, that's not who the patient is. 

It's and it's really it's really just these terms that these different conditions that we believe is what the patients dealing with a really, there's some other process or processes. I mean, maybe it's just not one thing, we have to be careful to not always attribute everything to one disease process. There's usually multiple issues going on. But there's a greater issue that's leading down this path of these multiple diagnoses. And unless we get that route, the patients, you know, continue to be sick. So that's what I want to help with.

Jackie Baxter  
Yeah, I mean, I've described long COVID - and it's probably similar with with other kinds of chronic conditions, as as feeling a bit like whack a mole, where you have the little moles or the little mouse jumping up, and you're trying to, you know, swat them all down. And that's like symptoms, isn't it? You know, if you treat your symptoms, it might help one symptom, but then there's going to be another one, and then you know, you get that one, and then the first one pops back up again. So really getting to the kind of underlying whatever's actually going on, underneath everything else is is kind of important, isn't it? I think? 

Dr Tania Dempsey  
Yeah. 

Jackie Baxter  
So yeah, I would love to hear about - what sort of patterns or kinds of things are you seeing with long COVID?

Dr Tania Dempsey  
So I guess the way I look at it, or the way I think about it, is that there's a trigger. Okay. And in a lot of patients - and maybe this is not answering your question directly, but I think it's important to sort of set the stage of how I look at this, okay. Very, very often, patients have - all patients, all of us, have different types of vulnerabilities. You know, we're born with a set of DNA, genetics, we have environmental exposures over the period of time that, you know, we're growing up, you know, and these different exposures, the environment, stresses, traumas, there's so many, so many things - can change our expression of the DNA. It doesn't change our DNA, we're still the same person. But how our genetics is expressed, can change, we call it epigenetics. 

And I really think that that is like the one of the key pieces to the puzzle. That's what we really need to figure out. 

So what I see very often, and I've published on some of this in regards to a another condition, related to post-vaccination with HPV vaccine. And, and basically, the premise is that patients who went on to have symptoms after this vaccine probably had an underlying condition that the vaccine brought out, that there was a vulnerability that they had, that then the trigger brought it to the surface. 

You know, I think about it as like, you know, maybe it's an iceberg. I have a colleague who has a great slide, I use it in my presentations a lot. DR. CLAUDIA Miller is a specialist in chemical intolerance. And so she has this great slide, and it's a iceberg. And you know, basically the person is like, underneath the water, you know, with all the stuff that they've been exposed to over the course of their lifetime. But then there's a trigger that brings the iceberg to the surface. 

And that's kind of what I see with Long COVID. That very often, and we can't say all, right, because nothing in medicine is 100%. I'm sure there are exceptions. But at least in my practice, what it seems is that there's a vulnerability, there's a underlying, you know, process that's going on. But patients can be relatively healthy, really can be asymptomatic generally. But there's a flavor if you go back over the history, the way I take the history, you get a sense that there were things that were not perfect, but generally were managed, the body was was able to handle that. And then this virus comes along and you know, whether it's the virus itself, whether it's the viral particles, the spike protein, whether it's some other immune dysregulation that happens, but it basically becomes a trigger. And the underlying stuff comes to the surface. 

And in that process, really, there's a whole host of different symptoms and conditions that can present. And I think some of it does have to do with the patient's vulnerabilities. And I don't know that definitely. Oh, but what do we know about long COVID at least part of it, we know is a is an immune dysfunction. We are starting to understand that mast cells play a role in this condition, because mast cells play a role in acute infection. So if you get COVID, mast cells will react and I can go through that whole sort of thinking of normal mast cells, abnormal mast cells, but they are part of your ancient immune system, we call it the innate immune system. And they're there to help you deal with these viruses. 

And so they get activated but after the virus goes away, for whatever reason, these mast cells continue to react, and you have mast cells everywhere in the body, they are everywhere that's in contact with your environment, every place, every organ, every tissue that has still communication with the environment. So that's where the symptoms can happen, which is basically everywhere - any tissue can be affected. 

So if we think about the nervous system, we think about the brain, you know, if the mast cells in that location get activated, then it causes irritation to the nerves. What does that irritation lead to - well, can lead to things like brain fog, depression, anxiety, OCD, other things affecting the brain directly right there. It can affect other parts of the nervous system like, like neuropathies, and some numbness tingling, it could even cause difficulty walking, difficulty using the body. It could affect the autonomic nervous system, the autonomic nervous system is the part of the nervous system that is automatic. It's the things that your body does that you don't think about, you don't think about your heart beating, you don't tell your heart to beat, right, it just does it. So that's part of the autonomic nervous system. And there are a lot of mast cells there. 

And so if the mast cells get activated, that part of the nervous system can get activated and cause things like autonomic dysfunction, or dysautonomia. Sometimes that manifests as something called Postural Orthostatic Tachycardia Syndrome or PoTS, that's maybe one disease process that can be associated with that. If you think about the skin, there's lots of cells in the skin. So with long COVID, you can see rashes, hives, weird, weird things in the skin, growths, you know, I've seen patients who have had like, weird skin growths, or little cysts and tumors and things like that. We know there's tons of mast cells in the respiratory tract. So chronic sinus issues, chronic breathing issues, chronic sort of asthma-like symptoms, you know, things that can be, you know, manifesting that area, partially from the mast cells. 

Again, I'm not saying that there isn't, there are things and other cells involved. But I think thinking about these mast cells and where they are, is helpful in understanding the symptoms better. The GI tract is a very common place - a lot of GI symptoms in Long COVID, right, lots of mast cells throughout the GI tract. So you can see issues with the motility - that's an autonomic nervous system issue, like you eat and your body should move the food through your digestive system. And if the nerves going to the GI tract are not working properly, then there's slow movements. So people find that they all of a sudden have issues with constipation, or they feel full or bloated. We know that there's patients who get inflammation in their intestines, different types of colitis, irritable bowel syndrome, small intestinal bacterial overgrowth, it's all so anyway, the symptoms like I could spend hours going through all the symptoms, it's really incredible. And obviously, this is a huge issue that patients are dealing with.

Jackie Baxter  
Yeah, that's amazing, isn't it? I don't know, maybe you answered this with when you're talking about the genetic kind of underlying susceptibility. But how does it determine what parts of your body are affected? You know, you said the mast cells are kind of everywhere. So why does one person get PoTS and one person get problems with their skin, and one person get GI things? Because, you know, lots of people get lots of different ones, but you do, from what I've seen, seem to get kind of clusters. And do we know what determines them?

Dr Tania Dempsey  
Yeah, that's a great question. And I think what we are starting to understand is that these mast cells that are abnormal, okay, so, we're saying that - I'll back up a little bit, right? Everyone has mast cells, and everyone's mast cells will react to COVID. Let's just set the stage okay. They will react, and if they're normal mast cells, they will reset. They will go back to normal after the infection is gone. 

If they already had abnormal mast cells that they may not have known about, then they get more activated with infection. They stay more activated because there's almost like a mutational process that happens at the level of the mast cells. The mast cell gets mutated. Now, it's very, very reactive. And for whatever reason, some patients will have mast cells that are more reactive and more mutated in one part of their body versus another part of the body. I don't think we understand that fully. 

But there is this mutational process that happens at the level of the mast cells in different locations. And it has to do with exposures. So it could be that maybe it's the spike protein, or maybe it's something else, that in that patient settled in a specific part of their body, maybe that's part of it. And maybe that's why those mast cells are particularly responsive. Maybe before they got sick, they had these dysfunctional mast cells, let's just say they had a vulnerability to GI issues. You know, maybe I've seen patients who, if you go over their family history, you know, they'll say, oh, IBS runs in the family, or colitis was in the family. And oh, yeah, you know, I used to be, you know, sometimes I knew that if I ate something, my stomach would bother me, but then I just avoided it. And that was fine, right? They had a flavor, but they were generally fine. 

Then they get long COVID. And their GI symptoms are now very pronounced. So those mast cells were already mutated, they were all ready dysfunctional, but they were on a quieter level. So they were not symptomatic. Until that huge trigger just brought it out. I think that's part of it. And again, I'll say that I we don't know all the answers. And I might change my mind. You know, if you interviewed me a year from now, I might have a different, you know, thought process on this, because it's always evolving.

Jackie Baxter  
I remember going to my doctor a while back. And, you know, there were all sorts of people talking about, you know, being gaslit by their doctors, and doctors telling them that, you know, they're making it up or they're hypochondriacs. And, and I went into mine sort of slightly concerned, plus the fact that I had all these symptoms that I didn't really know what was going on. And he turned around and said to me, Actually, we don't really know. And I remember thinking, Wow, that's amazing. That's amazing that you admit it that because so few doctors seem to be able to admit that. 

And I think it's wonderful that, you know, it is all evolving. And you know, there's research going on into all sorts of different things. And, you know, we have some answers, but they might change over time. And as you say, you know, in a year's time, we're going to have all sorts of different information, and different research and different, you know, all sorts. So, yeah, it's kind of exciting, isn't it? That actually, we don't know. But we will know more. I love that.

Dr Tania Dempsey  
Yeah. And I think, look, the good news is that there are really great researchers, clinicians out there who are questioning, who are constantly questioning the information we have. We have to do that, because we don't know everything about the human body. And we'll never know everything about the human body. But we continue to question and try to understand. And so because of those that are questioning, right, we are going to get closer to this, we are gonna have better, better solutions for patients who are struggling with this. 

But unfortunately, you know, there there are those out there who may be a little bit, you know, more closed minded, maybe you don't have an interest in questioning. And that's, you know, that's unfortunate when patients wind up in their, you know, their offices, but there are more and more clinicians, practitioners out there who are really on the side of the patient and trying to understand, you know, what can we do to get the answers we need?

Jackie Baxter  
Yeah, and I think that's so important, isn't it? You know, what can we do? What can we do now to try to make things better? And what can we do to look for more answers in the future? And I know, it seems really obvious to me, you know *laughs*

Dr Tania Dempsey  
me too, it seems obvious to us, right, but why isn't it obvious to others? Right. I always wonder about that.

Jackie Baxter  
Yeah. It's fascinating, isn't it? So, I mean, I know, obviously, we're talking mainly about long COVID here, but you've mentioned vaccine injuries, which is, you know, definitely a thing and, you know, all sorts of other chronic conditions that have existed for many, many, many years before COVID came along. And I'm just kind of curious about - do you see this underlying kind of process as being kind of similar - manifesting differently - but similar in all these kinds of conditions?

Dr Tania Dempsey  
Yeah, I do. And again, I think there's going to be - something we're going to find out about long COVID, that's going to set it apart. Again, I don't think we understand that whole process.But, you know, MECFS is a condition, you know, where their chronic fatigue syndrome, which we think, you know, maybe triggered by viruses or infections of various kinds, for some patients. So it definitely has an overlap. And I certainly - I was a co author on a paper looking at, you know, the MECFS and, you know, what the potential associated conditions are. And I would, I would argue that we're seeing that same thing in the long COVID patients on some level, right? Maybe there are differences, right. And I think maybe we need to focus on that as well. And but we're also trying to see what are the similarities. 

And as I mentioned, in the world of cell activation syndrome, there's a huge overlap. And the way I think about it is a lot of my patients, even before, let's say long, COVID, they came because they were fine, at some point in their life. For some patients, they were fine, maybe the first few years of life, and then things, you know, went off the rail, but maybe some patients are fine for longer periods of time. And then there's an event, and almost always there is an event, that brings them to a worse level of health. And that could be like a full blown sort of situation, or it could be mild symptoms still until the next trigger happens. And then they set up a new baseline of health, which is unfortunately worse. 

And so that flavor has been there all along in the patients that I see - those triggers, yeah, they can be vaccines. I'm certainly not anti Vax, I want to be very clear. But there are patients who react to various vaccines, maybe the excipients in the vaccine, maybe what the vaccine is mixed with or bound to, maybe there's some other immune process going on there. Again, there's lots of ways to explain it. But you know, sometimes that's a trigger, that then leads down a path of these other conditions that we start to see. And I'll talk a little bit about these comorbid conditions. 

For some patients, it's a breast implant, it's a foreign body, in their body. So it's Mesh from hernia surgery, it's a metal clip used to tie off an area where they've taken an organ out, it could be an implant of a different type - a dental implant, joint implants, it's a foreign body. It's not - these materials are not totally inert. And for some people, you know, most people are fine. But there's a subset of patients where that is going to bring their immune system to a heightened level,, and then set them up for the development of a whole host of these other comorbidities. 

So infection is a huge, huge area of interest of mine. And it's a huge area of concern for a lot of these patients, because very often, it's one of the triggers, it may not be the only trigger. But they live and work in a part of the country that's endemic for Lyme disease, and tick borne vector borne infections. So you know, it's not uncommon to see patients who have been infected with these types of microbes. And that could be the trigger that then sets off their whole immune dysfunction. And maybe it's in conjunction with other things that their body has to deal with. 

And maybe it's a mold exposure or some other toxin exposure that, again, they're chugging along fine, you know, but they're probably something that wasn't right. But they don't know it, because they're, you know, they're doing the things that they're supposed to do every day. And then something happens and they have exposure that then again, brings them to another state where their body just becomes completely out of control. 

So I don't know if I answered your question, but I think about really, that this is something that I've been interested in all along. Long COVID to me, again, I want to admit that there are going to be parts of this condition that we don't understand completely. That's not exactly like my Lyme disease patients, or exactly like my viral patients or my Mold patients, but but I think there's gonna be a lot of similarity. 

And I would argue that many of them, many long COVID patients, at least the ones that I see, have underlying issues like mold exposure, and Lyme disease or Bartonella infection, they've had reactions to things in their body or, or they've had reactions to medications they've had, you know, what they see as injury from medication even, so they've taken an antibiotic, and their whole health changed. And, you know, is it the antibiotic? Or is it something else in their body that in reaction with that antibiotic or that drug, or that whatever, you know, brought them to this condition. 

So I'll acknowledge that we don't know everything. But I think thinking about the similarities between the other issues that have, I guess, similar symptomotology, to some extent, or some similar disease processes, you know, I think it's helpful, right? Because how do we learn - we learn by association and by trying to see the similarities in different things. And hopefully, we'll understand more and more. 

So those comorbidities that I've mentioned a few times, like these associated. So I talked about various symptoms that long COVID patients have, but there are these main sort of areas where I think that this is sort of the common places, or the common things that sort of seem to go together. 

And, you know, I mentioned, autonomic issues, like the autonomic nervous system. So autonomic dysfunction is absolutely a huge piece that we see. We see a mast cell activation syndrome, and I put that in that mix. We see whether patients had connective tissue issues before COVID, or whether they've got more since COVID. Not entirely clear. But many of them, it's sort of a trigger for worsening connective tissue issues, some of them have, or are hyper mobile, or they're really flexible. Their tissue just maybe a little more abnormal. And that can lead down a path of instability of ligaments, and tendons and spine. And so in the neck or the back or, so we see that as a sort of a downstream effect, potentially. 

We see a lot of brain fog, right, brain inflammation is a is another common area, I sometimes will call it autoimmune encephalopathy, maybe a way to say it. In kids, we might have called it pandas or pans back in the day, but I think it's an inflammatory process. And it's not, it doesn't mean that patients have to have all these things. But these are the comorbidities that I'm seeing very much connected in many patients. 

And I have a I have a slide that I use in presentations with arrows going to all these different things, because we don't know which ones leading to which yet, but in the center of my slide is infection. And I do believe that, whether it's COVID, or some other infection or combination of infections, that's then driving this abnormal immune response. And then it's driving the inflammation that's happening in these different parts of the body. 

On that slide also is gastric issues, low intestinal bacterial overgrowth and motility issues. Again, I mentioned I mentioned that, small fiber neuropathy is another area that is connected to these things. And I have to say the one thing that I think is not talked about enough, is endocrine disorders and metabolic issues. And I'm really starting to appreciate that they are maybe the biggest problem, maybe the biggest root cause, bigger than we initially thought.

Jackie Baxter  
And that's fascinating, isn't it? I mean, the different potential triggers as well, there were so many there that I hadn't even thought of, you know. I sort of thought, Oh, well, it's basically always infection except for, you know, a couple of people. But you know, even if that's the majority, there's still so many other things. 

I think as well, just how everything is really connected in the body. And that takes us back to what you were saying at the start about, you know, our sort of healthcare system being very kind of tunnel vision at one kind of specific thing. And that's not particularly helpful when you've got somebody who's got all sorts of things going on. And they're all connected. If you're getting punted to like, you know, 17 different specialists and none of them are talking to each other.

Dr Tania Dempsey  
Oh my gosh, that is a huge issue. Right? Because you're having respiratory symptoms, you're gonna see a pulmonologist, and if you're seeing you're having GI symptoms, you're gonna see a gastroenterologist. They're all gonna look in their little bubble at the problem, and someone has to be able to see how they're all connected. And is there a root cause that connects them all? Or is it really that there really are these separate issues that have to be treated differently? Right? I mean, in some cases that may be true, but someone has to be able to look at that, you know, put it together.

Jackie Baxter  
Yeah, yeah. It's like a jigsaw puzzle isn't it - a really, really complicated one. So, again, this is probably a really, really wide open question. But yeah, what your sort of approaches would be to sort of treat and manage this sort of different aspects of this. And you know, you've just talked about how many different things there are. So I kind of just realized what a kind of crazy question that is. But let's roll with it. 

Dr Tania Dempsey  
Yeah. So, yeah. Okay. So, look, I think it's important, even though we started the conversation saying that all these diagnoses are not necessarily helpful unless you have solutions. And the reality is that - a lot of these conditions that I've mentioned, have some solutions, there are paths that you can take, paths you go down, you know, there are treatment protocols and treatment options for these various conditions. So it's not a waste, right, to know that. 

And for some patients, it is important to manage the symptoms, right? If you're not feeling well, yes, I want to get to the root, and I want to fix what's driving everything. But in the meantime, because I don't know how long it's gonna take. In the meantime, there has to be symptomatic control as well. Right. And I think this is what a lot of people struggle with is, you know, feeling like they're being treated, but they're not, you know, fully being treated. Because there are some people, there are practitioners are focusing on the symptoms and not the root. And some patients I'm hearing about, really, the practitioners are focusing on the root, but not the symptoms and sort of waiting for the symptoms to get better if you fix the root. 

And honestly, it has to be a mix of both. And in some patients the approaches, again, you're sort of - I use this analogy of it's like a dance, really, I see it as a dance - I used to be a dancer. So I sort of see like, oh, you take a few steps this way. And then you take a few steps that way. And so sometimes it really is, okay, let's get something on board. Let's manage the PoTS, let's get you a little bit your blood pressure, heart rate, everything like more controlled. But I know that let's say mast cell activation syndrome is a problem. So while I'm working on that, I'm also going to be - maybe not the exact same time maybe, you know, they have to be a little bit of you know, the timing has to be perfect, you know, maybe on introducing some mast cell stabilization and some support there. 

Very, very often, what I see is tremendous nutritional deficiencies. And I'm going to link this to what I said about endocrine disorders. So the endocrine is gonna include a lot of different conditions, but I'm mainly really talking about the metabolic state of the body. So you know, how you absorb your nutrients, how your cells take in the nutrients, all that is metabolic on some level. And I just see that so many people who are sick, just really are wasting away in a sense, that their body is just starving for nutrients. The body cannot work the mitochondria, which are the powerhouse of the cell, isn't making power because nothing to make power with. 

Some of that is a result of a lot of the food intolerances that some patients have, they've had to cut back so so drastically, that maybe they only have a few foods, so they can't get all the nutrition they need from those foods. Some of it is just they're eating okay, but they're not absorbing. So that just dealing with these conditions is depleting the body completely. So I have to say sometimes my approach and treatment is like foundational, I just got to get the patient to have some kind of nutritional health, you know, sort of their cells have to be healthy enough to withstand treatment, to be able to respond to treatment. 

You know, I think about mast cells, they have huge receptors on their surface. Mast cells know when you're vitamin D deficient. They also know when you're not vitamin D deficient. Well, vitamin D supplementation can help - some people I know there are going to be people listening who are going to say, you know, they tried vitamin D, they reacted. You can't react to vitamin D because you can't live without vitamin D. So most of the time people are reacting to an Excipient or the formulation of vitamin D, you really can't be allergic to a vitamin, really because you wouldn't be able to live, because these are all essential vitamins. So usually it's because there's some preparation about vitamin D, where it came from, what it was mixed with, that people are reacting to. 

But vitamin D and figuring that piece out, you know, can be huge. And there's literature on vitamin D and long COVID, vitamin D and acute COVID. So I like to start, it sounds simple, really. But I just think if we don't get that stuff in place, and make sure that the patient's in a healthier situation, then all the antihistamines in the world, all the other things that people are using to treat COVID, is not going to work as well, then as I see that all the time. So I think that has to be the start, you know, understand what people are able to eat, trying to figure out how we can get their food tolerances better, maybe we do have to give them stuff to calm their gut down so they can eat, so that we can get their nutritional status better. 

I mean, again, every path for every patient is going to be different. But these are the things that I'm always thinking about, you know, and if a patient isis in a situation where they're being exposed to something that is toxic for them, you know, maybe they are living in a moldy place, or they are not even mold, it could be a chemical of some kind, or some kind of like a pesticide that's being sprayed in the, you know, the house next door, they can't get better, if their mast cells are constantly being triggered by all these different things. 

Traumas medical trauma is real. A lot of patients we're seeing - those that were sick before long COVID, those who are sick with COVID, you know, have because you've seen, you know, so many practitioners and trying to get answers. There's obviously gaslighting going on. And there's just so much, right? So there's this medical trauma piece that I think doesn't help the situation at all, because now the nervous system is really, really more inflamed, more reactive. 

Then sometimes there's other traumas that people deal with, you know, life is tough. And not everyone has a good upbringing, not everyone has, you know, ability to avoid those things. Just things happen in life. That sets the stage for the nervous system, that sets the stage for the mast cells. And those are things that you can't undo. But you can work on helping the body get back in balance, let's say. And so those are like the top things that I think about. 

Limbic retraining is something that I recommend a lot. It's not saying that this is in your head, this is, you know, imagined, right? This is not - I just want to be very clear, right? This is not what we're saying, what we're saying is that the immune system is so, so dysfunctional, that it actually doesn't even know what it's reacting to anymore. And that's breaking down the system. So the immune system and the nervous system, right, are very much integrated together. And so the nervous system will react when the immune system is off, the immune system will react when the nervous system is off. So you somehow have to stop that. That's, it's like a short circuiting, you got to stop that. 

And there are lots of different ways to do it. Limbic retraining this just one way, but I feel like these are things that people could work on, you know, on their own or with their practitioners, working on the nutritional stuff, and the vitamin levels and mineral levels, but then right, then you're also working on the root cause and some of the symptoms, right, it's just really complex. Again, it was a tough question to answer, but I just wanted to give people an idea of how I looked at it, how I would approach it, you know,

Jackie Baxter  
yeah, I mean, that's a really interesting point, isn't it? You know, and I think what I've kind of discovered is that actually, the the body is, is quite amazing in its ability to kind of deal with stuff and to heal as well. But it won't heal, if it's in a position where it can't. So like you were saying about, you know, if people aren't able to take in nutrients or food or whatever, then you know, the body is going to struggle to do anything, isn't it, if it's in that kind of a state? So that's Yeah, that's really interesting, you know, to sort of give yourself the best shot before you even think about anything else, isn't it? 

Dr Tania Dempsey  
Exactly

Jackie Baxter  
But as yeah, as you say, it's obviously incredibly complex. I think on your website, it says something about mystery illnesses. And I think yeah, it kind of is, in a way, isn't it? You know, because every person is so different, as well. It's not like you can have a formula and say, right, well, this worked for Person X, therefore, you know, I'm going to do the same thing for the next person that comes through the door - it doesn't seem to work like that, does it?

Dr Tania Dempsey  
No, and I think this is really the most frustrating thing. Like, you know, there are some conditions in medicine where, you know, we have the algorithms. Like I remember, when I used to have to go to the ER, and see patients, you know, if a patient came in with chest pain, we had an algorithm, you know, we'd assume that they were having a heart attack, these are the things that they would get, these were the tests they would get, everything was just so clear. And I'm not saying that field is - I mean there may be nuances in that field as well. But generally speaking, there are conditions in medicine, where you can follow along, right, and have that path. 

And this is an area where there is no algorithm, there's really no way to follow exactly along. And for every patient that I have that responds to a certain intervention, I have as many patients or maybe even more who will not respond to that. And we were having a conversation amongst some of my peers earlier today. About, you know, what we really need is randomized control studies, with certain interventions for long COVID. Okay, and for some of the sequelae we're seeing, you know, there's some talk about micro clots, there's some talk about some other things, right, so we need to start studying some of these compounds. So we've been talking about different compounds. 

But how do you do a randomized control trial? How do you study this when every single person is different? Their mast cells are different, they're mutated differently. And so it's sort of, you know, it just, it's a little frustrating for many of us who are trying to get the answers. And I know, patients obviously are very frustrated. For now, until we have more answers, I think we try to try as many things, try to get some sense of, you know, the things that work for a subset of patients at least, right so that we have that all in our arsenal to help other patients. So we do the best we can.

Jackie Baxter  
Yeah, yeah, definitely. And I guess that takes us back to you know, what we were saying earlier about everything evolving, literally, as we speak, which is, as I said, exciting.

Dr Tania Dempsey  
It is, but not for the patients suffering, right? I mean, I can look at it from a scientific perspective and say, wow, you know, yeah, this is interesting, but way too many people suffering with it, so.

Jackie Baxter  
So I think my approach to long COVID has been to sort of hack my way through it and find things that work. And that involves finding some things that didn't, and making plenty of mistakes along the way, while I tried to find things that do work. So what sort of things could people look into themselves? And what sorts of things would people need to say, right, okay, at this stage, if I want to try that I need to go and you know, find someone who's actually qualified. What can people do?

Dr Tania Dempsey  
It's a great question. And I've really changed my mind on this a lot. If you asked me this question, three or four, maybe five years ago, right, I would have been really, really insistent, okay, that patients need to have a healthcare practitioner that they work with every step of the way. And what I've learned, unfortunately, is that there are way too many patients who need help, and not enough health practitioners to help them or not enough health practitioners that have an interest in helping them. And so the reality is that patients really are on their own, and certainly more than ever, in long COVID. Right, this has really changed. 

Like, pre COVID, maybe we would have had a different conversation. I'm always about partnering with a healthcare practitioner, and always having that relationship and working through things. And now I'm seeing, you know what, I don't know if that's realistic, I don't know, you know, there are people who are just not going to have access. So I think there are things that people can do, you know, in a smart way, you know, with some trialing and error, right. 

So number one, this Limbic retraining that I mentioned, that can be done on your own. And there are a couple of different programs, and sometimes Limbic retraining is not the right thing. I've certainly had patients who have done it, and have said yeah, maybe, pabut it didn't really make a difference. And I've had patients who've done it, and it's just dramatic. Again, I don't know, but itis something you can do online, you know, and try on your own. I think that for some patients using self guided imagery, meditation, vagal nerve stimulation, I mean, they're all these sort of hacks in a way, they're not really hacks, but they really are things that you can do on your own, on some level. Okay. 

I think that from a, like, nutritional perspective, it's a little more difficult. I think it's much more difficult without having some blood work or some testing to really understand what your issues are. But, trying to understand what foods make you feel better, what foods make you feel worse, trying to understand your triggers, I think is a big piece of what I think patients can be doing. Really trying to put together you know, there are some patients who are much more in tune and are more able to sort of figure it out. 

Some patients you know, it's just not as easy for them. So maybe you have to start journaling. Maybe you have to start tracking, you know trialing things. And then seeing, you know, writing it down. So otherwise you won't remember everything for women tracking how your symptoms are related to your menstrual cycle or not or right. So these are things I think that people should be doing. 

I think that there's certainly some, we'll call them supplements and or some over the counter medications that, yeah, again, a few years ago, I probably would have said, No, you really should do this under the guidance of somebody. And I still think that okay, I still think in a perfect world, everyone, you know, should have guidance on this. But having said that, I think that for the most part, you'll be good to have a vitamin D level, by taking some vitamin D is really, you're not going to get toxic on taking some vitamin D, as long as you don't take excessive dosages. 

You know, quercetin is a natural stabilizer, some patients find it okay, I think in generally lower doses, it's okay to do it on your own. But it can interact with other medications, it can interact with other systems in the body. So there has to be some monitoring but, you know, low doses, it can be good. Vitamin C is a natural anti histamine, you know, but they're just some things that I think are okay on some level, right, always better with somebody, but can be done. 

And then you know, we use these antihistamines very often to block histamine, block mast cell activation. So, you know, over the counter here in the US, we have loratadine, or Claritin, we have Zirtek or Cetirizine, we have livoCetirizine, or Zeizel. We have Allegra fexofenadine, diphenhydramine or Benadryl. So we have these options. 

And, you know, typically, if I'm seeing a patient, and I'm sort of walking them through how they're going to trial, it, they do one thing at a time, they try one formulation, they might have to try a different formulation of the same drug because of the Excipient issue, maybe there's something, some compound in one formulation that they're reacting to. So it's not the drug they're reacting to, they're reacting to something with it. 

So you trial one at a time, you give it two to four weeks to see - if you're not doing well on and you stop it sooner, you move on to the next one. I think some of those things, even with a true diagnosis of Mast cell activation syndrome, I think is okay. Like I'm not giving advice here, right, I just want to make sure that we have a disclaimer, right? I can't tell you what to do. Always best to have someone guide you through this, because it is a process. I prefer to guide my patients. But I also know that lots of patients are struggling. 

And I see patients who have come to me after they've already trialed a few things on their own, you know, they listen to your podcast and other podcasts and they listen to people, they read, you know, and, you know, they said, Look, I you know, I bought loratadine, and I wanted to try it. And actually, it does help, it doesn't help fully, but I feel a little better. So I'm coming in already in a different state, they're coming in to see me already a little better than they would have been if they hadn't had the opportunity to do that. Or they try these things, and it doesn't work at all, and then they really do need some help. So does that make sense?

Jackie Baxter  
Yeah, yeah, definitely. And I think I'm a perfectionist. And you know, I want to find something that will do all of the things, all at once. And I realized that she that that's not how this works, actually, you find one thing and you think, Oh, that helps a bit. That's great. I'm a little bit better than I was. And then you find something else. And you think, Oh, that's great. That's helped me a little bit more. So it doesn't seem to be I think, for anyone that I've really spoken to, that it's like they find the one thing and that is the one thing that fixes everything. It's more this kind of gradual improvement as you find more and more things. And that's quite empowering. I think, you know, we can find things, and we will find things. It's just takes a little bit of detective work.

Dr Tania Dempsey  
Yeah, yeah, a lot of detective work. But I think that what you said is correct, that there's yet to be like one intervention that's really going to change everything, right? I wish that was the case, but it just doesn't seem like we have the ability to do that. But each intervention might maybe controls mast cells in one part of the body. Or maybe it does, it calms down the nervous system or one part of the body. But then that helps other parts of the body at some level, but then you need something else that goes into that, so it's it is a process. 

And unfortunately, you know, when you're not feeling well, it's hard to be patient. Right? Because you want to be better yesterday. But yeah, I think some patience, some trial and error, and hope that we're gonna get this, you know, that people do get better. There are people who are not better. I understand that. Right. But I also am I'm generally an optimistic person. And I would like to think that we're going to get people better the more we know.

Jackie Baxter  
Yeah, yeah. And I think that hope is important. And it's very easy to sort of see the doom and gloom because that seems to be what we're always attracted to, doesn't it even the most optimistic of us, I think. But you know, people are improving, people are getting better, people are finding things that are helping them. And we have to kind of keep trying and keep believing, I guess, don't we? So, yeah, on that kind of topic, you are seeing improvement in people that you're working with?

Dr Tania Dempsey  
Yeah. Yeah. I can't help everybody, you know, and that's really - I'm a perfectionist as well. Right? I'm sure you're not surprised about that, either. So I want everyone to be better, perfect. You know, and, unfortunately, right, there are just going to be cases where it's going to be more difficult to get there. And I want to acknowledge those patients. And it is rough. 

Having said that, the reason I do what I do, and the reason I've learned the thing, you know, like I know things now over time, right, that I didn't know 20 years ago. And so again, that approach doesn't work for everybody. But generally, when I think of these things that I spoke about today, and I work through them with patients, yeah, many of them do really, you know, get better and recover. It's the ones that don't that that really, that just make us just want to learn more, and try more, and figure out why is that patient different? That's what we don't understand yet.

Jackie Baxter  
Yeah, aye, and everyone's different. Each puzzle has got a different picture on it. But it's like we're trying to do a puzzle without the picture, isn't it?

Dr Tania Dempsey  
No, exactly. I just want to encourage people to keep working on it, you know, for themselves, or, you know, if they're patient listening, if they're a practitionr listening, wherever we just have to keep at it. And really, from a patient perspective, really just not, you know, not to lose hope, and not to be discouraged by, you know, what some medical professionals are doing. It's just really unfortunate, it really saddens me when I hear these stories, but you know, just keep understanding that, you know, you know, your body better than anybody else. 

That saddens me a lot, I have to say, you know, I do I do have to say that I just, I just can't believe that we've come to this point where patients have to be such an advocate, like beyond advocate for themselves, they have to advocate for themselves or family. It is so much work, especially if you're sick, it's so much work. And so I hate that that's the situation that people are in. But I think that in the long run, that's going to teach all of us and the patients are going to you know, ultimately I'm learning from patients, so I appreciate everything that the patients have done to get some answers. And then I think they just need to keep, you know, working and protecting themselves.

Jackie Baxter  
Yeah, and I think remembering as well that there are some doctors out there that are really not very helpful. But there are so many that are, there are so many like yourself, like so many others that we've all experienced, that are really great. So I think yeah, hopefully it's the minority that aren't. That's certainly been my experience. 

Cool. Well, thank you so much for joining me this evening. This has been absolutely fascinating, and I'm sure it will be for everyone listening as well. So thank you so much for giving up your time to speak to me. 

Dr Tania Dempsey  
Thank you. Thanks for having me.

Transcribed by https://otter.ai