Episode 61 - POTS after the HPV vaccine with Dr. Tania Dempsey

00:01 Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive, but thrive. This is the Standing Up to POTS podcast.

00:30 Jill (Host): Hello fellow POTS patients and lovely people who care about POTS patients. I'm Jill Brook and today's episode of the POTS practitioners might be one of our most important yet. Our guest today is a world-renowned clinician and researcher who is going to present her team's newly published hypothesis about the mechanism by which POTS may occasionally occur following HPV vaccination, and we're going to talk more broadly about how a variety of things could possibly trigger POTS by the same mechanism. So this episode will be relevant to anybody interested in how POTS may get triggered. Our guest is Dr. Tania Dempsey, who is an internationally renowned expert in chronic disease, especially ones that involve chronic immune dysregulation such as autoimmunity, mast cell activation syndrome, Lyme disease, and all kinds of related conditions. Dr. Dempsey uses integrative medicine to get to her patients’ root causes of their illnesses. Dr. Dempsey received her medical degree from Johns Hopkins. She completed her residency at NYU Medical Center and Bellevue Hospital. She then served as an attending physician at a large multi-specialty practice in White Plains, NY, before opening her current practice, AIM Center for Personalized Medicine. At this clinic, she partners with the famous Dr. Larry Afrin, who you may recall we interviewed several weeks ago. Dr. Dempsey is also a staff member of Greenwich Hospital in Connecticut and she has so many more other impressive medical credentials, but I would use up all of our time if I named them all. So, Dr. Dempsey, thank you so much for making time to speak with us today.

02:25 Dr. Dempsey (Guest): Of course, thank you so much for having me.

02:29 Jill (Host): So, I have so many topics I'd love to discuss with you, but today we're going to focus on your new publication about POTS that just came out in the journal, Vaccines. And your article starts by reviewing the history of HPV vaccines being involved in a little bit of a mystery or a little bit of controversy, where on the one hand, quite a few published case series or investigations have reported seeing some POTS and some related conditions coming on soon after HPV vaccination. But on the other hand, some pretty large high-profile studies have looked into the safety of these vaccines and determined that they are generally safe and effective. So now you and your coauthors, all of whom are very top specialists in POTS and Mast Cell Activation Syndrome, and related disorders, have proposed that both perspectives could be correct - that HPV vaccines are generally safe and effective yet may still result in POTS for some unlucky few. And you present a hypothesis that explains how this could be true - a kind of a missing link that might have been overlooked before. And one thing I love about your article is that along the way it does just a beautiful job of explaining some things about POTS and Mast Cell Activation Syndrome that I think our audience will really benefit from understanding better, even if they don't currently have an MCAS diagnosis, and even if their POTS did not come after HPV vaccination. But before we dive into everything, I just want to make sure, have I described this accurately so far?

04:23 Dr. Dempsey (Guest): Yeah, you've got it.

04:25 Jill (Host): OK. So let's dive in. I'm excited to break down your article for our audience, but maybe we can just start with the super basics of what is HPV and what is the vaccine for it?

04:39 Dr. Dempsey (Guest): Yeah. HPV is a human papilloma virus. It's a very, very common viral infection. More than 42 million Americans are currently infected with one of the types of HPV. There are really more than 150 strains, and although they've narrowed it down to about 40 strains that probably cause cancer. And they've narrowed it down to two main strains that cause maybe 90% of cervical cancer. So what we know about this virus is that it's transmitted via skin-to-skin contact via intercourse, oral sex, lots of ways, and unfortunately, if anyone gets infected with it, over time the virus can cause changes in the cells and then eventually lead to cancer. We know there are certain cancers that are more likely to develop from HPV and just to be clear, again, because there's so many strains of HPV - or so some people would know it as genital warts - sometimes you could see the warts, sometimes you can't. It's the ones that you can't see that are usually problematic. And they can cause cervical cancer that's - again over 90% of cervical cancer cases are due to two particular strains of HPV - during 16 and 18, if you’re interested in that. And we know that probably 70% of oral or pharyngeal or throat cancers are due to HPV. And so, this is an important virus to understand. It's an important virus to get control over, right? So there's the prevention side of things that people are looking at, right? So it's safe sex. It's the, you know, things that go along those lines. And then there's this vaccine that was designed to help prevent infection with one of the - in fact, we'll talk about the vaccine itself, but really, one of nine of the main strains that can cause cancer. So it's an important virus, the vaccine - I'll just dive right – in I believe it was in 2014 the new Gardasil HPV vaccine was, I guess, approved, right, by the FDA and at that time when it was approved, there was another Gardasil formulation that had four strains in it. And then in 2014 they developed this Gardasil with nine strains. That’s the only one that's available here. You can only get Gardasil in the United States for HPV. The vaccine has a number of excipients, maybe some of your audience would know those are the ingredients that it's mixed with. In order for the HPV vaccine to work, it has to have what's called an adjuvant and adjuvant is something that makes the immune system react even more to build an immune response. So in order to prevent someone becoming infected with HPV and then getting cancer, you have to have an immune response against the virus. And so, the Gardasil vaccine was created to have an adjuvant made of aluminum to create the immune response. Now, in Europe, I'll mention that there are several formulations of HPV vaccine. There is a Gardasil 9. I believe they have - there's another Gardasil formulation. And then there's something called Cervarix and the Cervarix has a slightly different adjuvant. I think it is aluminum based, but it's a different form of aluminum and has a sort of a different reaction. It may also cause a good - actually looks like it's a good immune response. Stronger antibody response. So that's basically the gist of, you know, the vaccine, its importance, and and about the virus itself. I hope that covers it.

08:44 Jill (Host): Yeah, you've already taught me more about HPV than I ever knew before. [Laughs] So who gets HPV vaccines? Is it males and females? And what age?

08:57 Dr. Dempsey (Guest): Yeah, so the recent guidelines - it's the ACIP, the Advisory Committee on Immunization Practices - they are recommending that all girls and boys get vaccinated at age 11 or 12, as early as 9, and that if it doesn't happen until ages 13 to 26, that they get a catch up vaccination. But the FDA has approved it for ages 9 to 45. It's a big range, but again, the recommendation is to get it at ages 11 or 12. And I think that the the thinking behind that is that in the studies, they showed that during that particular age range, the immune response - the antibody response - was best. So that kids who gather at that age may only need 2 doses of the vaccine versus 3 doses that you might need at other ages. So what they're saying is they've expanded the range, so they say ages 9 to 14 - males and females - receive 2 doses over a 6 to 12 month period. But then if you're older than that or a young adult, they are recommending 3 doses because it seems that the older you get, the less the immune response is adequate enough to make antibodies.

10:23 Jill (Host): OK, that makes a lot of sense. I have to admit when I had heard that they were recommending it as young as 9, I started worrying that kids in America were getting sexually active that young, but it's not that. It's the immune response is better when they're that young.

10:39 Dr. Dempsey (Guest): But I will say that yes, that's also - there's another part of it. And that is that because of the concern that children are becoming sexually active, teens are becoming sexually active earlier, if you talk to pediatricians, they will say they want to give that as early as possible in case. It's like a just in case. So there's probably 2 parts to that, yeah.

11:01 Jill (Host): Got it, OK.

11:03 Dr. Dempsey (Guest): Two reasons for that.

11:04 Jill (Host): OK. So, your article starts by giving kind of a synopsis of some of what the medical literature has said about POTS vis a vis HPV vaccine in the past. What has that literature said?

11:20 Dr. Dempsey (Guest): You know, that there's a subset of patients who will go on to develop POTS, CRPS - complex regional pain syndrome - or other neurologic events. But, you know, there were two studies that actually looked at other studies and looked at the methodology of the HPV vaccine clinical trials, and they really found incomplete reporting of some of the serious harms. Those studies looked at, you know, whether they were underreporting side effects - adverse events. So there were a couple of those. Then there was a big study by the Nordic Cochrane Centre and even in their analysis they they found actually a pretty significant increase in side effects such as POTS. Well, firstly they looked at myalgia, like achiness, fatigue, headaches. They did find a increased risk of POTS, increased risk of CRPS, and they wrote in their paper was that new onset POTS was judged as definitely associated and was increased by HPV vaccines. Now, there have been probably more than a dozen case reports and case series. I think in the literature there's at least 150 cases that have been published on these various side effects. So, we have some, you know, data and support for the vaccine being problematic. Now of course, the numbers are still small compared to the millions of people who have received this vaccine, and I want to be clear - they found a significant association between HPV and let's say POTS, but again, you know, if you look at the numbers, it's still small, relatively speaking. I think that's important to know, right? Because we don't want to instill fear about the vaccine.

13:18 Jill (Host): Right, right. And HPV leading to cervical cancer isn't exactly a risk-free proposition either, so...

13:30 Dr. Dempsey (Guest): Correct, correct.

13:33 Jill (Host): OK, so this is the really big question: What is your hypothesis that accounts for HPV vaccines occasionally potentially causing POTS while also being generally safe and effective? And what were you and your co-authors observing in your patients?

13:55 Dr. Dempsey (Guest): So, most of the case reports of adverse events with HPV vaccines have really not been able to identify any specific factor other than the vaccination that led to the adverse event. And that sort of raised the question of what is it about this vaccine? Is it the vaccine or is there more to the story leading to these side effects? And so, we sort of introduced this new hypothesis basically as a way to suggest a strategy for reducing adverse events because with a clear path, a clear understanding of why people might develop these side effects, we can maybe prevent them. And so really what our hypothesis is that really by looking at our case series, we believe that our patients developed, not only developed POTS after the Gardasil HPV, which again, has been described in the literature, but also had histories of symptoms consistent with mast cell activation syndrome which were present prior to the HPV vaccination. And after the fact, responded to treatment once they were diagnosed. So basically, to narrow it down, the hypothesis is that that maybe the patients who are having the side effects or those that have underlying mast cell activation syndrome that is unknown to them - it's mild, it’s maybe not hasn't completely presented. You know, it’s interesting when you take these histories, very often there are these subtle findings or subtle facts that the patients tell us, sort of like the red flags always go off in my my head, “that sounds like mast cell issue.” You know, sometimes it's subtle, like they have some allergies, and sometimes they don't have that, or they have inflammatory type symptoms: growing pains, joint pains. They have these things that have come up during childhood. Then they received the Gardasil vaccine, so they already had probably dysfunctional mast cells that they needed a trigger to prime those mast cells. And then that whole cascade of events leads to POTS and the other thing. So our hope is with this theory that if it's true, if we can find a way to prove it, of course, this isn't just - these are cases, we haven't proven anything - but if we could determine if this is true, then if we could identify the patients who have MCAS before going for the HPV vaccine, then we really could potentially make a huge difference, right, in outcome.

16:41 Jill (Host): Yeah. So if I were to try to summarize just to make sure that I have it and our listeners have it, and I suspect a lot of our listeners resonate with this - that you're talking about having symptoms before you had a diagnosis that. you know, looking back maybe mean something to you, but at the time you'd never thought to think about it. But, so you in your case series talked about patients who, looking back, had inflammatory or allergic type symptoms before they got the HPV vaccine, suggesting that maybe they had undiagnosed MCAS, and then something in the HPV vaccine maybe served as a trigger to kind of take it up a notch and make their MCAS worse. And I think you mentioned that they responded to MCAS treatment. Can you talk about that? Because I am guessing that some of your patients it had been a long time since the original trigger, right?

17:42 Dr. Dempsey (Guest): Yeah, we're not going to say we cured everyone, that would be unrealistic. I would say that that many of them had at least a partial response. So, if it were the vaccine - so there there are some people in our medical community who believe that the vaccine is damaging something, right? And that that the damage may be, let's say, irreversible. What we're saying - and we're not going to argue that point - that may be true to some degree. I'm not, you know, that's not my area of specialty. But what we're saying is that there is something in the vaccine that is causing the mast cells to become activated inappropriately, or more inappropriately, and that targeting the mast cells - so we're not targeting the vaccine, you know, we’re not doing anything, we can't do anything sometimes, where you're right, we're seeing them 10 years, 20 years later. But managing the mast cell activity can be very helpful.

18:41 Jill (Host): So, your paper had this great explanation about MCAS, saying that MCAS stems from a genetic predisposition, and then there can be a - and I'm going to quote it here - “potential for many antigens to trigger a major and permanent escalation of baseline mast cell misbehavior.” And I'm guessing a lot of our listeners can relate and may remember an event in their life where their health was never the same again afterwards. For me, I think it was wisdom tooth surgery. And, I'm wondering if you can talk a little bit more about whatever is known about this phenomenon and maybe give examples of common triggers that you see for that big escalation of mast cell misbehavior?

19:34 Dr. Dempsey (Guest): So, you know, the issue really is not genetic in the traditional sense. We’ve not identified all the genes for MCAS. What we believe, and again, some of what we're talking about is there's some research - preliminary research - that has suggested what I'm saying. Some of the research is not in MCAS, per se, but maybe a mastocytosis or in people studying cell lines. So, to be clear, we don't have a gene for MCAS that we know of - there may be there may be multiple - but the genetics really is rooted in epigenetics. So the way I think about epigenetics is that the epigenetics is something outside of your genes. Epigenetics could be a chemical, it could be something called a methyl group that you would make from nutrients that you eat. It's your environment’s interaction with your genetic makeup. And so what we know is that epigenetics - things that are in your environment - that then sort of bind to genes and change - they don't change the gene, they change how the gene is expressed - gets passed down from generation to generation. So, in MCAS we often see families with signs of MCAS. We might see a mother, father, grandparent. And so, the reason that may be is because there's something about that original – let's is it was a grandparent - there was something about that grandparent. Let's say the grandparent - I'm making some of this up because there's no way to prove this, but let’s say the grandparent was a smoker and that smoking became an epigenetic event. The chemical from the tobacco bound to a gene or part of the genome, and it made the genome unstable, to some extent. That got passed down from generation to generation. What we believe is that it's the fragility of the genome that leads to mutations over time. And these are the mutations that may be causing stem cells from, let's say, the bone marrow to give rise to mast cells that are mutated and dysfunctional. So it's a complex series of events that we believe is what's responsible for development of MCAS.

22:10 Jill (Host): So that makes sense. And then I think there's a Part 2 to that that I think you were about to explain.

22:17 Dr. Dempsey (Guest): Yeah.

22:18 Jill (Host): The escalation?

22:19 Dr. Dempsey (Guest): The escalation, right. So I want to make one more point that I think is really interesting first, though. And because when we talk about families, one of the things that families often ask me is, you know, why symptoms are different. Like, I can have two siblings - I can have twin siblings or parents or whatever - and they can have MCAS but the symptoms are different.

22:41 Jill (Host): Yeah, what's up with that?

22:43 Dr. Dempsey (Guest): Right? And you think, how is that possible? Well, the pattern of activation, the mast cells mutations, lead to a different array of mediator expression. And then the mediator expressions - the different mediators dictate the symptomatology, to some extent, and where the symptomatology comes out. So, let's just say one family member - talk about the event - but let's say they've had escalation of MCAS and their symptoms are mostly, let’s say, skin-related, and they seem to have more of a histamine issue. And let's say the labwork confirms histamine. But another person in that family had a different trigger, a different event, different mutation might have manifestations in their gut or in the lungs, and maybe their main mediator is leukotrienes. So again, there's no mutation causing MCAS, it's a weakening of the genome that then is allowing mutations to occur, and then that's being passed on. And then more mutations are accumulating over time, especially if the mutation happens in a stem cell that then is going to develop into a mast cell. So that, I hope, you know, helps to explain it. Now, the question is about the triggers, and, you know, I don't, again, I don't think we understand completely why one event in particular is going to be the trigger for a particular patient. But the trigger, which will set off the mast cells, may lead to further mutation. And this is an area we're trying to study because we believe that the mutations in the level of the mast cell may, if we understood those, maybe understand treatment better. So, the trigger probably sets the mast cells off into our area where they're mutated. Then they really are sort of on their own, doing their own thing. So, for - I don't know your history - but like if you had the wisdom tooth surgery and then that caused the mast cells to become more aberrant, and that led to more mutations and that led to more mast cell activation and that, you know, sort of a vicious cycle, it may be hard to come back from that.

25:10 Jill (Host): Right, because that is sort of the main thing that you mentioned, where it sounds like sometimes you can encounter a trigger that makes them escalate that's hard to come back to baseline afterwards.

25:24 Dr. Dempsey (Guest): Exactly. It seems that - and this is the unfortunate thing - it does seem like over time in general, patients with MCAS do have an escalation of their symptoms. They can return to a baseline. They often don't return to baseline where they started, let’s say, when they were born. But like, you know, I see it as like a step. You know, they reach another step. Some trigger brought them to this step, so for some that that step is way up there. Sometimes it's a little step and then the patient is in the midst of this flare, then they will plateau and that step, just you know, they just - they're flat. Then there's another trigger, and then there's another step that they go up. And so, it does seem over time that MCAS can escalate like that. It can do it in increments. And there can be long periods of time when the mast cells are stable, or it could escalate very quickly, very high, and be very hard to stabilize.

26:28 Jill (Host): Yeah, so that's the bummer of mast cell activation syndrome and that's the reason I work so hard to escape wildfire smoke every summer because that's a big one for me and I've learned that it's...it's not worth it, because it's going to be so hard to get back to baseline after.

26:46 Dr. Dempsey (Guest): Yeah, yeah. And I'm sure there are lots of other people who suffer with that too. And the thing is that - I think that you bring up a good point - one of the most important steps that we talk to patients about is avoiding the triggers. If you know the triggers - unfortunately, some people haven't figured out their triggers yet – but if know your triggers, you avoid it at all costs, and sometimes you can't...you can't help it. But your question about what are the triggers, well, that's the challenge because to the individual and their mast cells, the triggers may not be obvious. Sometimes it is, right? So if it's a excipient in a vaccine, if it's a exhibited any medication, if it's a stressful event, emotional trauma, physical trauma, accidents. I mean, there are so many, the list is just goes on and on, what could really do it. So I think it's it's important for patients who are suffering with us to...to start to look at all the potential triggers and try to eliminate it. And trauma is a big one and trauma is a very hard thing to deal with, but it will continue to perpetuate the mast cells if, you know, if it's not dealt with on some level.

27:59 Jill (Host): So your paper had a wonderful section tying the mast cell activation syndrome back to POTS, and we have talked about that before on this podcast, so our audience will have heard it before. But, you and your authors are just so eloquent. As I was reading it, I was like, “oh man, this is the best explanation I've ever seen of how POTS can arise from mast cell activation syndrome.” Do you mind talking about that for a minute?

28:31 Dr. Dempsey (Guest): Yeah. I think there are a few ways actually to look at this. You know, we talked about three ways basically that we think that MCAS can lead to POTS, and this is a review, maybe, for some of your listeners. But mast cells are mostly found at the body’s environmental interfaces protecting us from the environment, but they really are in abundance in the walls of the vessels - of blood vessels and nerves. And if you imagine if we talk about the blood vessels first, so it's a tremendous repertoire of mediators that mast cells can produce and release, the effects on the blood vessels could be pretty pronounced. It could have a vasoconstriction effect or vasodilatation effect. So constrict, dilate, and that could be driving the things that we see with hypertension, for some POTS patients, hyperadrenergic POTS, or hypotension - low blood pressure - sometimes alternating. And of course that having an effect on heart rate, et cetera. So, so the mast cells are in the area of the vasculature, and so we believe that the mediators that they're releasing or then basically telling the blood vessel to act in a certain way and then is causing the POTS symptoms, OK? So that's one...one way to look at it. Now, there's a form of POTS – neurogenic POTS - where it's really related to the nerves, right? So mast cells are frequently found in this close approximation to nerve endings. And so, if they release the mediators at that location, they can send a signal to the nerves - to the nerve endings - release their neural transmitters. It can impact the mast cells and mast cells with their neurotransmitter, so to speak. Some of...some of what the the mast cells make, the neurons can act on, and...and then that sends an erroneous way, and then you wind up with dysfunction in the nervous system, right? So dysautonomia, essentially....the autonomic nervous system becomes dysfunctional. So those are the ways I think about it mechanically speaking, right? So...so the mast cells and vessels, the mast cells and nervous system, and how they're impacting the interaction between them. I think the other important point to make, and I don't think we understand this either yet, is that you know some POTS patients have autoantibodies. So there's an area of research about autoimmune POTS and we know that mast cells are involved in potentially causing the development of autoantibodies, mast cells interact with other cells in the body, mainly the B cells that make antibodies, and so there's also the possibility that the mast cells are somehow driving the development of autoantibodies, or at least helping that process along. And then, you know, thus you develop this autoimmune...basically the immune system attacking the nerves and the autonomic nervous system, and then POTS. So that's how we've sort of looked at it.

31:48 Jill (Host): Yeah. So mast cells are just amazingly powerful. It's just incredible to me. To me, your hypothesis feels very strong, like I almost want to smack my head and say, “Of course,” if I feel like I have seen this in other treatments such as breast implants or other things and it, just to me, seems super possible that this is happening. But it also makes me wonder, why wasn't this proposed or studied sooner? Because there's been some pretty big and well-funded institutions like the Nordic Cochrane Centre that have looked into POTS after HPV vaccine, and so, do they just not know about mast cell activation syndrome, do you think? Or are they...

32:39 Dr. Dempsey (Guest): Yeah, I, I think... I think it comes down to: you don't know what you don't know. And so I think they looked at the things they understood - or thought they understand. MCAS is a relatively, you know, newly identified disease disorder. Whether it was on the researchers radar or not, hard, hard to know. The other part is I, I think that while a lot of this research has looked at, let's say POTS or other adverse events from from HPV vaccine, it seems to me that in reading the literature that there weren't a lot of people asking the question “why?” They were trying to look at the correlations, the causations, right? They look at all that, but the question was why, right? So, if you don't really look at or think about the “why,” then you're going to get stuck, 'cause if you look at the “why,” you say, “Well, what is it about HPV vaccine that is leading down this path,” right? And you start to think about ingredients and then you start to think ingredients, at least in in my world, we start thinking, “Well we know how mast cells respond to excipients” and so to us it's sort of also, like you know, we smack our head and go, “of course!” because it's how we think about things. But, you know, it's not clear to me that the research had been asking the question “why?”

33:50 Jill (Host): OK. can I ask what kind of feedback you've received about your article and your hypothesis from other doctors and your patients?

33:58 Dr. Dempsey (Guest): Yeah. Well, I'll tell you that the patients have been so appreciative. I'm so thankful and grateful to patients of mine that contributed to the article. This is important work that they're part of. And in general, I think that people are relieved to see that we're starting to think about these things in a way so many have responded on social media to me about, “finally, yes!” They all knew this is what was happening, but no one was talking to him about it. No one was validating them, right? And it's just that's what we want to do. We want to...we want people to understand, like, we're hearing you. We know this is a problem and, you know, let's figure out how we can, you know, we can get, you know, more research on this. So no, the response has been great. I I have to be honest other than my community right now of doctors, the MCAS community, obviously, and any of the doctors who are treating POTS, EDS, you know, so supportive, right? Like, saying the same thing, like, “of course!” It makes sense. I haven't heard yet from the other part of the medical community yet. Been a little bit quiet, interestingly, and, I don't know what to make of that yet. I really think that we need to get the word out. I'm good at putting the word out into my community, right? But I'm sort of preaching to the choir. Now, how do I get this information into the OB GYN's office, into the pediatric offices? That's the question, but so far the response has been great.

35:27 Jill (Host): Great! Well that's good to hear 'cause that was my response as well as I was reading this. I, like, almost wanted to cry because I was so happy that this was, you know, getting said and of course at Standing Up to POTS we hear from patients who get gaslighted all the time and so so the validation, like you said, was huge. And we're so appreciative that you and your co-authors listen to patients and believe patients and so we are excited to help spread the word about your paper. If your hypothesis gets some testing and some support, you had mentioned that maybe it could be used to help prevent some future adverse events. Do you mind talking a little bit more about that?

36:13 Dr. Dempsey (Guest): Yeah. Listen, I think that there's several areas that have to be looked at. We really need to understand association versus causation. I think that we could look at whether pre-vaccination screening for MCAS could be an effective strategy for prevention. I think that we need to follow...we need to even look at other vaccines, right? And understand how this could potentially help with any other possible, you know, reaction. I think that we could potentially look at how mast cell targeted pretreatment with, let's say antihistamines, for instance, of patients who might be at risk and how that might reduce the risk of post vaccination adverse events. So, I think this is exciting because vaccines are probably one of the most important inventions of modern medicine, and you know, we have to remember what vaccines have allowed us to do and to overcome. But obviously there's a potential problem, right? Particularly with this one. And so again, we're not saying there are lots of people who are fine, right? We're saying, what can we do to get people vaccinated appropriately? And what can we do for prevention? And these all need to be looked at. Can we prevent these events if we know enough about this process beforehand and can treat it?

37:44 Jill (Host): Yeah, that's exciting. And it makes me think that probably some of our listeners have children that they might suspect are at elevated risk of MCAS, either because of their genetics or they're already maybe showing some of those early symptoms. And do you have any suggestions for them to help them maybe avoid that major and permanent escalation in mast cell misbehavior? Or is it so hard, because I know that everybody triggers are different and there's a million triggers out there, and if you are predisposed to this, do you think it's virtually inevitable that something is going to come along and trigger these people? Like, I guess you want to balance minimizing risk, but without living in a bubble. Like, have you thought about how to manage that?

38:33 Dr. Dempsey (Guest): I think about this all the time. You know, I come from a preventive medicine background. I'm really all about what we can do for optimizing health, preventing, you know, bad things from happening. But we don't have all the answers. I'm not God, right? I can't - there's no way that we can know exactly how to prevent everything. You know, our environment is somewhat out of our control, to some extent. So I'm sort of about – look, you have to live your life and there are some things in your environment that you can control. Think about the things that you can, make some decisions about that. Maybe you can't control things that you thought you could control either, right? We're not going to drive ourselves crazy 'cause that added stress will drive your mast cells, and that's also. So the things that I think about for children and also for adults, too - we need to decrease our toxic load. You know, I think that what we're going to find with with time is that mast cell activation syndrome is a disorder of modern day where we are bombarded with so many toxins in our environment. We're living in a world that's different than 50 years ago, 100 years ago, 200 years ago, and I would venture to guess that...that while there may have been MCAS back then, the numbers are probably greater the more we are exposed to the world that we live in. So again, can't control everything. But I think that feeding our children the highest quality food, if possible, organics or you minimize the pesticides, because we know that pesticides can have far reaching effects on mast cells, on hormone dysregulation, on lots of things, limiting sugar and really getting adequate protein and fat. The body, the cells have to function, the brain has to function. In my opinion, vitamin D is by far the most important vitamin to ever like think about, OK? If you don't do anything else, you gotta think about vitamin D. Mast cells have vitamin D receptors on their surface. So, vitamin D deficiency can cause an escalation in mast cell activation syndrome. I've seen it. I've seen vitamin D supplementation reverse mast cell activation syndrome, or at least control it. I'll tell you an interesting story: We had a child in the practice who - young, you know, like 2, 3, 4. It was a child of another patient that we were seeing. And...hives, hives, rashes, hives. Just they could not figure. Every allergists saw the kid. Nothing, no, wasn't allergic to anything. Really sounded like MCAS, right? But he's hard to diagnose that young. Was getting weaker. There was all these other symptoms that were starting to come up, but the rashes were incessant. So, what happened was I said finally we have to check the vitamin D level. And check the vitamin D level – and it's almost zero, which I've almost never seen. And it's so bad that the calcium levels are starting to come down. It takes a lot for calcium levels to start to go down, but because vitamin D helps the absorption of calcium. So almost no vitamin D calcium going down. It's really kind of getting dangerous. And then supplement with vitamin D and that's it. There's no rashes. All the symptoms go away. Now the kid probably has underlying MCAS. There may be another trigger awaiting him, unfortunately. But it was so dramatic - the response. And so vitamin D - making sure they get enough vitamin D. It's not a not a guarantee they're not going to have an MCAS flare or trigger, or escalating event.

42:22 Jill (Host): That's wonderful. I wish I could listen to you all day now. Luckily, you do have some videos online and have some resources and Facebook information, and you are such a wealth of knowledge. I just so appreciate everything you put towards this. Where can people find you online if they want to learn more?

42:44 Dr. Dempsey (Guest): Sure. Well, thank you so much, Jill. That was so sweet of you to say. So I have a website. It's drtaniadempsey.com. I have a practice website. My practice is AIM Center for Personalized Medicine. Our website is AIM Center PM - P as in Peter, M as in Mary dot com. AIM Center PM. [https://aimcenterpm.com/ ] Of course, my Facebook page – Dr. Tania Dempsey. Instagram is DR Tanya Dempsey, MD. I'm trying to write, put more information out there. I love doing these podcasts. I love just dumping my my brain into into this stuff 'cause I have so much that I want to share with everyone, and I don't want to keep it all in there, so...

42:46 Jill (Host): Ah, Amen! And we will put all of those links in the show notes so that listeners, if you want to find Dr. Dempsey's paper that we've been discussing, or any of these resources, they'll be in the show notes. And Dr. Dempsey, I just cannot thank you enough for doing this work and writing these kinds of papers when you see that our community may have unique issues and that you are in a position to help prevent getting worse for some of us. I really hope that your paper gets circulated widely and that it educates the masses about MCAS and POTS, and just thank you for all the work you do to help everyone in the chronic illness community all the time through all your outlets. We are really grateful to have a doctor of your caliber and compassion working on our behalf. And, hey listeners, as always, this is not medical advice. Please consult your medical team about what's right for you. Please consider subscribing and feel free to send us feedback at standinguptopots.org/podcast, but most of all, thank you for listening. Remember, you're not alone and please join us again soon.

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