Chemical Sensitivities In MCAS

Beth O’Hara, FN

Welcome to this episode of the “Reversing Mast Cell Activation “and Histamine Intolerance Summit”. I’m your host Beth O’Hara of Mast Cell 360, and I am so excited today to have Dr. Tania Dempsey with us. And I wanna tell you a little bit about her. She is an MD, she’s board-certified in internal medicine and integrative and holistic medicine. She graduated with her MD degree from John Hopkins. And in 2011, she founded her center that’s now called the AIM Center for Personalized Medicine. This is a destination practice in Purchase, New York. And she focuses on complex multisystem diseases. She’s an expert in mast cell activation syndrome, dysautonomia, chronic fatigue syndrome, tickborne infections and autoimmunity. She’s the co-author of a chapter on urogynecology and hypermobility.

And I just wanna make a plug for the book called “Disjointed”. This is a great book, really excited about that on EDS and hypermobility spectrum disorders. And she’s also authored several groundbreaking articles in the medical literature that’s been game-changing in the area of MCAS. One of the areas we’re gonna dive into today is this groundbreaking research on chemical intolerances which affect many people with mast activation syndrome. So excited about this and honored that you’re coming on to share with us, ’cause this is gonna help legitimize this awful experience of chemical sensitivities so many people with mast activation syndrome deal with and I had myself and then you’re stigmatized out there because people don’t believe you, they don’t understand, people are told they’re crazy. So I think this interview’s gonna be very valuable for both patients and practitioners. Thank you so much for joining us.

Tania Dempsey, MD

Oh, thank you so much for having me.

Beth O’Hara, FN

Can you tell us first a little bit how you became an expert in this field? There’s not a lot of experts here.

Tania Dempsey, MD

Right. You know, I think that, yeah, it’s been an interesting journey. I started, some of it was my own exploration into health and wellbeing, and just how to treat patients better. I think that in general, not how I got to be a MCAS specialist, but how I even got into integrative medicine was really understanding that our medical system has a big problem and patients are not being listened to, and patients are being stigmatized. And I was getting so frustrated in that model of medicine, and I was seeing, what I was seeing was that the more I spent with patients, the longer I spoke to them, the more I would see that they had these very unusual symptoms that no one else would pay attention to. And I became more interested in that because it was something that I wanted to help the patients and no one else could help them. So when I started my integrative practice, it was sort of like this evolution of, the more I started to see, the more open I was, the more I started to see, right. The more I started to see the more open I was, right. 

It was sort of like this beautiful sort of evolution of, well, you know, I opened up my practice in the middle of an endemic region of the country with Lyme disease. And so, of course, what am I gonna see? Some chronically ill patients and I’m open to it, and now I’m gonna learn more about Lyme disease, and then I’m gonna, you know, be mentored by Dr. Richard Horowitz and some other experts in the field. And then the more you see those patients, for me at least, it was sort of an evolution. Some of those patients were very sensitive. I just attracted patients who were more sensitive. I was more, I was patient, I wanted to figure it out for them. I knew there was a reason, it wasn’t just, they were just sensitive, there had to be something. And so, as I explored with these patients, I had this one patient back in, I think it was like 2014-ish, that had the sudden sort of onset of all these sort of sensitivities to anything we gave her, herbs, or medications. 

And she went from sort of functioning really well to, like, to not functioning. And I started, you know, scouring the internet, scouring the medical literature, trying to figure out what it was about her, why that happened. And I came across mast cells and mast activation syndrome. And I don’t even remember where I saw what I was reading, but I remember saying to her, “I think this is something that is relevant to you. “Let me dig deeper.” And I found, I came across Dr. Lawrence Afrin, who’s now with me in my practice. But at the time, you know, I called him up, like, “What do I do about patients like this?” And I just, it just took off from there because once you see it, you can’t unsee it. And so yeah, it just evolved. And that’s been my interest.

Beth O’Hara, FN

And you’ve been in this, in the context of mast activation syndrome, that’s a good chunk of time because the diagnostic criteria wasn’t even established in, or diagnostic code until 2016.

Tania Dempsey, MD

Correct.

Beth O’Hara, FN

So you were seeing that there is a lot of chemical intolerances, chemical sensitivities. Sometimes these are called multiple chemical sensitivities and this research that you did, you called it TILT. So I just wanna give people these different names, toxic and induced loss of tolerance, but we’re all describing the same thing. How does this develop? And then can we talk about how that’s related to mast activation syndrome?

Tania Dempsey, MD

Right. So, you know, to be clear, I think, well, I think it’s important to understand, you know, what we did for the study, what we were really looking at, what our hypothesis was. What we found, and what we’ve known for some time, is that a lot of our patients who have MCAS also seem to be sensitive, and sensitive, I shouldn’t even say chemically sensitive, just sensitive, right. And then there’s a subset that are chemically sensitive. And so, you know, we were wondering whether there was a connection and what the connection was? So the question is, is mast cell activation syndrome the driver, the cause of chemical intolerance and chemical sensitivity? And so we’ve been working with the TILT people, the toxicant induced loss of tolerance group from out in Texas, and Dr. Claudia Miller is really one of the pioneers. And so she, sort of, started like putting these thoughts in our mind, we started thinking about it, putting our heads together. 

Like, there’s something about what she’s doing, what we’re doing that totally makes sense in overlaps, but how do we figure that out? So, because the reality is we could say a lot of things in practice, like, “Oh yeah, you’re chemically sensitive.” I say this sometimes, “You chemically sensitive, “you probably have MCAS.” but then of course I wanna prove that, Right. But here, you know, we have to be careful when we publish, that we’re coming out with a statement that is as valid as possible. So what we did was, we had all our patients, all our new patients joining our practice, fill out, and then subsequently other patients, fill out a questionnaire. And the questionnaire is known as the QEESI questionnaire. And this was pioneered by Dr. Claudia Miller. And people can find the questionnaire on QEESI.org. It’s Q-E-E-S-I.org.

Beth O’Hara, FN

We’ll put that on our resources page for everybody for the summit. You can find that at mastcell360.com/summit.

Tania Dempsey, MD

Great. And also the tiltresearch.org website is also a really great source of information. So we gave patients these QEESI tests, which people can do on their own, they can take the tests, we gave it to them. And then we looked at whether the patients we had were specifically diagnosed with MCAS, and we used the criteria known as consensus-2 criteria that a group of us, including Dr. Larry Afrin sort of put out and published. Using those criteria, we had patients who had a diagnosis of MCAS, and then we had the QEESI questionnaires. And what we found was that there was a high correlation between the MCAS patients and the scores, and the QEESI scores. And so, you know, again, the thought then is that while we can’t prove that chemical intolerance is caused by MCAS, it’s suggestive of that. 

I would say, I believe that, but, again, as a scientist, I wanna prove it. So what we believe is that there’s a trigger four mast cells that are then that’s sort of leading down this path. There’s a really great picture of an iceberg that I love, that’s sort of like, there’s a lot of stuff happening underneath the water, and then once the iceberg is above the water, that’s when the symptoms start. And so there are these triggers that happen over time to mast cells, and then it sort of explodes, and then, you know, patients develop chemical intolerance. But to be clear, you can have MCAS and not be chemically intolerant, and you probably could have chemical intolerance and not have MCAS. We think, we just haven’t proven that, you know, fully. But that’s what I would say is true.

Beth O’Hara, FN

And I’m realizing, we should actually step back and talk about what is chemical intolerance? And what types of chemicals are we talking about, so people can relate to this? I’m thinking how I used to have to hold my breath to go down the laundry detergent aisle. How having to fill my gas tank up was a nightmare, and then I didn’t know if I was gonna be, you know, too faint to be able to drive home afterwards, and I’d have to make sure I was upwind and not downwind from the gasoline. So if I got in an elevator and somebody was wearing fragrance, I might start flushing. So can you describe this more, so people can relate for their own experiences or their patients for our practitioners.

Tania Dempsey, MD

There are several groups or categories of, we’ll call them initiators and triggers for TILT, for toxicant induced loss of tolerance. It’s not all chemicals. It’s just, these are things that maybe the triggers that get the mast cells going and, sort of, cause them to become dysfunctional, you know, causing the array of mediators that they release, et cetera. So the categories are, you have those VOCs, those volatile organic compounds, those are the fragrances. You could have VOCs from even mold, mold releases, those organic compounds, you have formaldehyde, new carpet, new furniture, plasticizers, that’s that category.

Beth O’Hara, FN

New clothing and people going in into a clothing store or fabric store.

Tania Dempsey, MD

Correct. And then you have the combustion-related products. So those are things like gas, oil, exhaust, tobacco smoke, things like that. And then you have solvents, and gasoline actually would be in that category as well, paint, paint fumes, nail polish, you know. And then you have things like pesticides, which is a huge issue. There’s organophosphates, there’s Deet, there’s pyrethroids, there’s a bunch of others.

Beth O’Hara, FN

Roundup, I just wanna explain for some people that this is what’s getting sprayed on our produce and also drifting onto organic produce now.

Tania Dempsey, MD

So Roundup is not a pesticide, actually, it’s a weed killer. But I would put that in that category, anything that we’re spraying to make our plants grow in a sense is potentially problematic. And then, you know, lastly, probably not last, there are probably other things that I didn’t mention, but there’s a category I would say, we’ll call it drugs and medical devices, and those are things like, could be antibiotics, could be chemotherapy, could be implants, could be dental implants, could be breast implants. And I guess we could even say vaccines potentially. So these are all things that could be triggers for TILT, and then ultimately MCAS, really, is what we’re talking about. But they can not only just be initiators, they can then also be the thing that keeps you sick and keeps you continuously being triggered. Does that make sense?

Beth O’Hara, FN

Yeah, that’s perfect. That’s great. So I think that paints the picture of these types of sensitivities, and people can be quite sensitive to very low levels that other other people aren’t triggered by these don’t notice whatsoever. And, you know, I think about going with a friend to go clothes shopping and my eyes burning, and they’re fine, you know, they don’t notice anything. But this is kind of this difference in what’s happening with how we describe people with these kind of sensitivities and MCAS as being the canaries in the coal mine. So we are the ones that are super sensitive, but these are toxic for everybody, it’s not like they’re only toxic for us. So can you tell us more about, so the study that you did, what did you find in terms of the overlap in the TILT and the MCAS? If we can get into some of the results there?

Tania Dempsey, MD

Well, you know, there was a, definitely this correlation with scoring between the MCAS patients and the QEESI results. And the QEESI, I should mention, is a validated questionnaire. It’s being used all over the world. It’s got published, you know, research on what it’s doing, what it’s showing. And so anyway, that’s why we chose that questionnaire, that way of measuring this. So right, so the reality is that what we found was that there was this overlap, a very high percentage of patients who had high scores and the MCAS diagnosis. Now, the problem is though that that doesn’t necessarily, just because you have a high QEESI score and you have MCAS doesn’t mean that the chemical intolerance is caused by MCAS. We couldn’t show that with this type of study. We’d like to do a study where we can actually try to prove that, the connection. All we can say is that they’re connected, and that it’s very likely, given the mechanism of action, given how mast cells work that mast cells are the cause, essentially, of the symptoms that people have with chemical intolerance or TILT. And so, again, so the study is, it was very exciting to be able to publish this, but it’s really like the tip of the iceberg, ’cause we have so much more that we have to show and to prove. So, I mean, that’s essentially, you know, I think it’s helpful if people took the QEESI. At one of the conferences I did recently, I did the BREESI questionnaire with people in the audience. The BREESI questionnaire is a three-question questionnaire that is sort of like a screening. You can use it almost as a screening tool before the BREESI, before the QEESI, So BREESI before QEESI, and the QEESI is 50 questions, the BREESI is three questions. and the questions, and if you don’t mind, I can kind of do it quickly.

Beth O’Hara, FN

Yes. Let’s do it.

Tania Dempsey, MD

Give sense of what we’re looking for, but this sort of is just what we talked about. So the question is the first question. Do you feel sick when you’re exposed to tobacco smoke, fragrances, nail polish or nail polish remover, engine exhaust, gasoline, air fresheners, pesticides, paint thinners, tar and asphalt, cleaning supplies, new carpet or furnishings? By sick we mean headaches, difficulty thinking, difficulty breathing, weakness, dizziness, upset stomach, et cetera-

Beth O’Hara, FN

So I can say yes to that one.

Tania Dempsey, MD

So if you answer yes to one or more of these questions, the recommendation then is to go to the QEESI to really sort of break it down, even further, understand the process a little more. The second question is, are you unable to tolerate, or do you have adverse or allergic reactions to drugs or medications such as antibiotics, anesthetics, pain relievers, x-ray, contrast dye, vaccines, or birth control pills, or to any implant, prosthesis, or contraceptive device, or any other medical, surgical, dental material or procedure. And I would say that there’s a fair number of patients or people who will answer yes to that, or maybe answer yes to both. And the third question is, are you unable to tolerate, or do you have adverse reactions to any food such as dairy wheat, corn, eggs, alcoholic beverages, or food additives like MSG or food dye?

Beth O’Hara, FN

Gosh, I think this is almost every client. I know we see really sensitive people, that’s what we specialize in, but I think it’s almost everybody we work with.

Tania Dempsey, MD

No, it’s absolutely true. And that’s why we started thinking with this, that there has to be a connection to MCAS. But, again, I have MCAS patients who are not sensitive. I saw a patient the other day who was wearing perfume, complaining of all the MCAS symptoms they were having, but I could smell the perfume and I was thinking, “How are they tolerating that? “Or do they not realize they’re actually reacting “to their own perfume?’

Beth O’Hara, FN

That’s what I wonder. Yeah. Yeah. I think sometimes, I mean, it took me a whole long process of figuring these things out and figuring out, “Oh, that scented candle, “that’s a fragrance sense, not an essential oil. “That’s probably triggering me.” And just stepping through these little, by little, by little, cleaning out underneath the kitchen cabinet, and then later on getting into the rest of the cleaning products, doing my makeup. And it’s, there’s so many, there’s so much greenwashing out there. So I think about, we have these products that say that they’re organic and clean, and then they have fragrance. Or we have these makeup companies that say that they’re all green and they’re organic, and then I look at the ingredients, and it’s ridiculous what they have in there. And they have carcinogens and all kinds of things. It’s a real challenge for people.

Tania Dempsey, MD

Oh, my gosh, this really gets me. It really gets under my skin. I just can’t believe it ’cause I’m also interested in all this, and as I’m educating my patients and speaking, you know, I want people to know as much as possible. And when you start really digging, you know, there’s a handful of companies that probably are doing it right in terms of producing clean products that are gonna be well tolerated. And even within that category, there’s still gonna be patients who are not gonna tolerate even those things, right. But so much of the green washing and it’s really, really incredible. I was looking for a cleaning product for my kitchen, for the counter, and I ran out of the one we were using, and so I started like looking online, and all the green products for cleaning the counter. And I couldn’t believe what was being advertised as natural. There was this one product that had all this, like, ammonia in it, it looked like the label of Lysol, but they were actually advertising it as, like this clean green product. Couldn’t believe it.

Beth O’Hara, FN

Yeah.

Tania Dempsey, MD

Yeah. It’s problematic. So all these people are being exposed. There are lots of people who are being exposed, who are not reacting per se. They don’t have chemical intolerance, but it’s still not good for their body. They just don’t feel it.

Beth O’Hara, FN

Yeah, exactly. So we know that mast cells can react fairly quickly. And I love this article, by the way. I just wanna, for anybody who’s looking at, looking for this article, it was published, I believe, in 2021 called, “Mast Activation May Explain “Many Cases of Chemical Intolerance.” And the way it was written is so clear. It’s very easy to follow. And you talk in there about this role of the nervous system and how quickly mast cells can respond. Because what’s happening is that people, when you have these experiences, it’s instant, it’s so quick. I mean, you’re talking about fractions of a second, and that’s part of why people have been told that it’s psychological because there was this thinking that, “Oh, these biochemical processes can’t happen “that quickly to activate a headache “or make you feel lightheaded or your eyes burn.” But we know that that’s not true. Will you talk more about that?

Tania Dempsey, MD

Yeah. You know, they’ve actually done, you know, research in the lab studying how long it takes for the release of the granules within mast cells of let’s say histamine. How long it takes for the mast cell to produce things like prostaglandins. I mean, there’s all, and off the top of my head I couldn’t give you the exact numbers, but yes. I mean, fractions of seconds you can get the first load of mediators released. Then there’s a process of, the next step is there are, so there’s preformed mediators, so they’re gonna be released very, very fast, instantaneously, essentially, and then you have this production of additional mediators, and some of them are partially made, so they’ll be released shortly thereafter. And then there’s this process of additional mediators being made over a longer period of time. So patients who are having a reaction to something, they get that instantaneous result, right, the symptoms, and then the symptoms linger for a lot of patients. Sometimes they leave the environment and it clears. I have patients that it will clear pretty quickly. But others might feel sick for a day, or week, or longer after an exposure. 

And that’s because the mast cells are continuing because they’re dysfunctional, they’re gonna continue to release these mediators, then they’re gonna continue to produce more mediators, and then they’re gonna release more of that. And then some patients will find that they’ll just hit a wall. Things will just not get worse, maybe they’ll feel better, and they think it’s gone. And they may feel better for a period of time, it could be a day, could be a few hours, could be a few days. And that may be, I call that sort of the honeymoon period, and that’s a period where the mast cells have actually depleted most of their mediators and there’s really not much else that they can release. And so patients will feel better because the mast cells cannot react until they’ve gone through the manufacturing process and built up their mediators, and so they’re ready again. So I don’t know if you’ve noticed that, but there are patients who will have this sort of timeframe they’re feeling okay, and they don’t know why, they don’t know what the intervention was, but it’s just that the mast cells have sort of been depleted and then restarts again.

Beth O’Hara, FN

Yeah. That makes so much sense. And thinking about this, how rapid this initial response can be. I also think about how we have mast cells at the nerve endings and this communication, I call it a feedback loop, and you talk about it as a crosstalk in the paper, and between the mast cells and the nervous system, that’s something that I don’t think is appreciated well enough, this role of the mast cells at that interface between the outside world, but also between the nervous system and the rest of the body. And because it’s so rapid, how does the nervous system play a role in these kinds of reactions?

Tania Dempsey, MD

Yeah, it’s incredible, really, if you think about where mast cells are in the body and you think about where they are specifically in the nervous system. I like to draw for my patients, I’ll draw like a line and I’ll say, “That’s a nerve.” It’s essentially like a wire, and it’s sending a signal from one end of the wire to the other. And then I draw the mast cells in circles, literally lining both sides of that wire. And so that’s really where the mast cells are; they’re everywhere, they’re at the endings, they’re along the entire nerve, and they’re there to protect, they have a function. It’s really when they become dysfunctional, when they’ve become, you know, so let’s just say you have somebody who gets an illness, they’re fine, they’re healthy, they get COV!D, for instance, right. Their mast cells will get activated because that’s what they do. But if they have normal mast cells before they had COV!D, their mast cells will reset and go back to normal. But a lot of the patients we’re seeing have dysfunctional mast cells. And so they’re there. So they may react to COV!D, but then they may never really come back and heal after that, could be these other exposures. 

And so if you imagine that the mast cells are, can release over 1,000 different chemicals that they can make, right. It’s really incredible, the number of chemicals that they can manufacture and the number of receptors they have, but they release these mediators, they’re very highly inflammatory, they will send a signal to the nerve. If they’re sitting right next to the nerve, that chemical goes there, sends that signal, and then the nerve can release its own set of chemicals or neurotransmitters. Or one of the things we think about, is something called substance P, which has been known, it’s been implicated in pain. So we know that the mast cells can release one chemical, the nerve ending can release the substance P, it then tells the mast cell to release more, and it becomes this vicious cycle. In the brain there’s more than just the nerves and the mast cells, there are these other cells there that help also protect the body and part of the immune system, and they also produce their array of chemicals. 

And so you imagine that if a person’s mast cells are more active, let’s say, in the brain. And I’ll say that that patients often do have areas where their mast cells are more active, but you have patients who have more skin issues, patients who have more gut issues or lung issues, you could have multiple obviously areas, that’s part of the diagnosis of MCAS. But you have patients who often their reaction is in the brain, it could be headache, it could be a cognitive dysfunction, difficulty thinking, it could be anxiety, depression. I’ve seen patients exposed to a chemical immediately feel almost suicidal. It’s almost instantaneous, that’s not mental, that is a chemical reaction in their body. And so, you know, it really, unfortunately, right, is hard to recognize if you don’t understand this. But if you understand it, the process, the reactions are pretty amazing.

Beth O’Hara, FN

I wanna drive home for people how this is not uncommon because so many people dealing with mast activation syndrome and these sensitivities, they’re the most sensitive person they’ve met. I was the only sensitive person I knew for years until I got into this in practice. And it’s easy to think you’re the only one, but the population studies are showing that we’ve got between 9 or 10 to 17% of the Western population likely have mast activation syndrome at some degree. And then what I found really interesting was the research cited between Japan and the United States of 8 to up to 33% of people with chemical intolerances. That’s up to one in three people with the chemical intolerances, that’s around 1 in 10, 1 in 9, possibly closer to 1 in 8 people with mast activation syndrome. That’s a lot of people. And we’re talking about the general population, we’re only talking about the chronically ill population. Do you have any thoughts on how common MCAS might be in those with chronic illness?

Tania Dempsey, MD

Yeah, you know, I think that it’s probably very, very common in the patient population that has multisystem, disease processes, autoimmunity, what the numbers are, hard to say. Again, general population is 17%. But if I look at my practice, if I look at it before I understood MCAS and then understood MCAS. And so once I understood it I went back and looked at all the patients that I was treating. Some of them, I went back and said, “You know what? “I can’t believe I’ve been treating you for five years, “but I think you have MCAS, “but I didn’t know about it until now.” So at one point I said, you know, “Really, if I look at my numbers, “it’s about 90% of my patients had MCAS.” Again, I have a selective group of patients that I’m seeing, they’re coming to me because no one else has been able to help them, and so there’s a high likelihood they’re gonna have some component of this as either the full explanation of their problem or a partial explanation. But 90% is a tremendous number.

Beth O’Hara, FN

It is particularly because when you opened the AIM Center, you weren’t branded for mast activation syndrome. We didn’t have a, you know, you didn’t really know what that was back then. So I wanna talk about the role, we know that mold can be a massive trigger of both mast activation syndrome and these chemical intolerances. I wanna talk about the role of infections and then move into for people what they can do and some action steps. But let’s first talk about infections. How can they have a role? Which ones are bigger triggers that you see in mast activation syndrome and these chemical intolerances?

Tania Dempsey, MD

Yeah. I mean, listen, any infection, really, theoretically could be problematic. We’re seeing a lot of COV!D, post COV!D, long-haul COV!D, and I’m really concerned about that and what this virus is doing and how it’s activated MCAS for a lot of patients. While we haven’t proven that long-haul COV!D is an MCAS-related illness, many of us believe that is probably the case. If it doesn’t explain the whole thing, it explains a big part of it. And many long-haul patients that I’ve seen realize that once we’re on that path and we’ve diagnosed them and we’ve treated them and they start to get better, they realized that they probably had MCAS before they got COV!D, but it was sort of under, it was that iceberg, it was under the water. They didn’t know it until that trigger of that infection. So COV!D is obviously very, very problematic. And then, you know, all the tickborne infections, you know, I do see a lot of it because of the area of the country that I’m in, my interest in it. And so, you know, Lyme, Borrelia, Babesia, for sure, are big ones. And parasites in general, intestinal parasites, not just blood parasites, but BCI, I think, parasites are really interesting in some ways because if you look evolutionarily at the mast cell and what they were really designed to do, their job really was to help us deal with parasites as a primary job. 

So if you think about it, you know, it makes sense that parasitic infections could be problematic and then obviously Epstein-Barr and all these other, I mean, list is really extensive. I think what’s important is that, there are a couple of ways to look at this. There can be people, right, so there are people who had MCAS but didn’t know it, they must have had some dysfunction of their mast cell, but they were healthy. They might have had the occasional sniffle, they may have the occasional IBS symptom, they may have an occasional migraine, but functional, and didn’t really connect any of those symptoms. Then they get Lyme or they get COV!D or they get Epstein-Barr, they get something. And it is the trigger that then brings out that underlying problem. And when you remove the trigger, you hope that the mast cells go back to their baseline, but they may not go back to the original baseline, they may not be perfect, they may not go back to completely normal. And I would call that, this is more of like a idiopathic MCAST. It is like a combination of, there probably was some primary, there was some issue and then this trigger, you can call it a secondary problem, and then, you know, but you can never get them back. I don’t wanna say never, it’s hard to get them back to 100%.

Beth O’Hara, FN

It’s hard work, it takes a lot of work.

Tania Dempsey, MD

Yeah. And, but it’s not unheard of, of course, that’s what I do. I get people better, but it is harder. There are patients who really have pure secondary MCAS. They had no MCAS dysfunction, at least not that we can detect by history. I might not have known them before, you know, I have a patient, for instance, she’s in her 50s, 60s, and until 40, she was 100% perfect. We cannot detect anything that sounds like MCAS before she got Lyme disease, at secondary MCAS. And what you hope is you remove the infection, and then those mast cells that were not dysfunctional before, hopefully will reset when you take away that trigger. That’s the problem, it’s often very hard to know who is the patient that’s really in that idiopathic realm and who is really secondary. And a lot of patients say, “If I treat the infections “am I gonna get 100% better?” I would like to think, yes, but I don’t know what their underlying mast cells are really doing and how, I’ll use the term mutated, they are to begin with.

Beth O’Hara, FN

And how, people have different bandwidths of how far they wanna go. I actually knew someone who had mastocytosis, and so for our, you know, people listening, who aren’t familiar with really rare, severe genetic disorder, and she was able to actually manage the mastocytosis with no medications. But she lived in a rural area, she grew all of her own food, everything was organic, there were no chemicals, it was mold free. That’s what she did. And then she was able to live her life and be very healthy, but she couldn’t go into the city, she couldn’t go out to eat at a restaurant without medications. And then other people may not have to do, that’s just an extreme example, but depends, some people wanna have their restaurants, they wanna, you know, live in the city and things like that, and they may need more maintenance than somebody who’s gonna really keep those triggers managed. I also wanted to just highlight, there was a post you put out on social media, that I really appreciated. There was that Lyme is not just in the northeast of the U.S., it’s on every continent, other than Antarctica, which there are no ticks in Antarctica.

Tania Dempsey, MD

Probably.

Beth O’Hara, FN

But this is a worldwide huge problem.

Tania Dempsey, MD

Yeah, and it’s really, you know, we’ve done a disservice. We, meaning the government, the scientists, you know, by really thinking that, yeah, these types of ticks are only transmitting Lyme in this part of the country. Now, the problem is that the Lyme that they talk about is really Borrelia burgdorferi, that’s the genius and species of this particular strain. But the Borrelia is like the family kind of Lyme-type infections, but it could be Borrelia burgdorferi, is Lyme from the northeast, but then there’s Borrelia afzelii from Europe, garinii, and there’s like a list of all these Borrelias. And the problem is that those Borrelias can be transmitted by different ticks. Some of them are transmitted by deer ticks, but it could be others. And so we’ve gone into this like really like small space where it’s the deer tick, transmits Borrelia burgdorferi. They don’t have that tick in California, so they can’t have Lyme disease in California. And it’s just really crazy because they may not have Borrelia burgdorferi, but they may, I’m not saying, I think they do, but very, you know, it’s very likely that they have another strain, but it’s causing the same symptoms. It could still wreak havoc on the entire body. So I’m trying to educate people to say, “Yeah, you can have Lyme, Lyme, depending on, you know, really anywhere in the world.

Beth O’Hara, FN

Yeah. These tickborne infections. And that really highlights how these health conditions and the triggers have become so complex. It takes this kind of complex multisystemic thinking, be able to look at it. So we can’t use if, then kind of logic anymore. It’s multifactorial and all these things are interconnected and interrelated. I really like to make sure that we always end with hope and action steps for people. What do you find in your practice to be some of the most effective ways to work with sensitivities in mast activation syndrome? When I think about all the sensitivities, I kind of have three categories of people that come in. I have people that, I think my easy category and they can take any supplement and medication and they can start at a whole capsule. I don’t see a lot of those people, but they are out there. They, you know, and they usually can do well with a normal functional medicine practitioner, and they’re fine. And then I have my sensitive, complex people, and they’re the ones that have a list of sensitivities, but they still have a number of foods that they’re eating. They can start supplements, but they might start with a few sprinkles. They have to go slowly. Then I have my, and sprinkles might be like, they open the capsule and they put just a few little granules in water. Then they have my super sensitive people. And these are the people that are down to two or three foods, they can’t leave their homes, they aren’t tolerating any medications or supplements. So could we talk about strategies for both of those sensitivity categories? ‘Cause I start differently with them and I imagine you do too.

Tania Dempsey, MD

It’s really tough. And their life is really, really limited. And our job is to get them to tolerate the world better. So this is the reality. On the negative side of things, I’ll just be a little negative, but then I’ll be positive. ‘Cause I am a positive person. Negative is like, “We live in a pretty toxic environment. “it is really, there’s lots of that should be done “and there should be a focus on climate change, “and there should be a focus on getting rid of “all these toxins and chemicals and all that.” So the reality is though this is the world we live in. And there are a lot of people who tolerate the world. And so we have to get our patients to tolerate the world that we have for now, while we’re working on changing the world. And so, you know, I think about it like this, there are lots of reasons why patients get to the point where they’re only tolerating two foods. It’s usually a longer process, usually not overnight that that happens, and so we have to unravel it for them. So we need to make sure we have a diagnosis. We have to make sure that we look at all the triggers. I think this is like the most important thing. It’s not just, they know that they eat a food and they react to the food. It’s understanding what’s in their environment, it’s understanding any trauma or anything that they’ve dealt with. Everything around us contributes to who we are and to our health. 

And so, you know, it it’s hard work, but starting to identify, it could be a person in your life that’s a trigger. It could be, you know, there’s mold in the basement that you’ve been ignoring because you can’t afford to take care of. There’s all these reasons why there are things that are just gonna keep this process going and keep people sick. So we have to start working on that, no one’s gonna be able, not everyone’s gonna be able to live like you’re patient, you know, in the wilderness, essentially, making her own food and whatever. So with what you have you figure out how to eliminate exposure. So I have one patient, for instance, who knew she was living in a home that was contaminated with chemicals and also mold, and her husband worked to build a little home next to the home, you know, so they could be close to the family, but also with all these material that had to be picked out and it was a process, not everyone can do that either. But it’s really first identifying things that may be problematic. It’s doing work like DNRS, Gupta Program. I would call it, you know, limbic retraining brain retraining, not to say that this is in their mind, that is not even close to, this is their physiological process. 

But because we know that that how the nervous system perceives the environment will impact the mast cells and impact your health. So working on that is part of the process, whether that’s the first thing they do or whether that’s something they don’t do for a year until you have done other things. Every patient is different, right. How I intervene and where I start things is gonna be different. And then, you know, once I feel like, “Yes, I have a diagnosis,” they have MCAS, they have, you know, chemical intolerance, then, you know, I’m starting, you know, to do the work. And whether it’s a H1 blocker that I’ve compounded into minuscule amounts, or whether it’s a supplement, or whether it’s another drug or whatever. But I think the key is that I’m never going to, not never, you have to be careful, it’s going to be harder to get people better. Let’s just say that one of their triggers is Lyme disease. I may not be able to treat their Lyme unless I’ve done some of the work to calm their mast cells down. And sometimes I’m doing things simultaneously, almost, one step ahead of the other, you know, “All right, let’s start a microscopic amount of H1 blocker “and let’s build that up. “And then when things are calmer, we’ll go in and try to do “something on this end.” I dunno if that makes sense?

Beth O’Hara, FN

Absolutely.

Tania Dempsey, MD

But, I think it’ll have to be a really, really carefully laid out systematic approach.

Beth O’Hara, FN

Yeah. That’s the same thing we do here. And we’re definitely on the same page. And I just wanna highlight a couple of really important things that you said, the nervous system piece, and then the limbic part being neurological, physiological, but the limbic system controlling fear, emotion and safety. And there are some mast cells in the limbic system, and then we have a leaky blood-brain barrier, those mast cells will migrate across, and you get higher concentrations in the brain. So for people who can’t tolerate anything, orally, a supplement or a medication, they can start talking to the mast cells through this limbic retraining, vagal retraining, nervous system work. And that can communicate a signal of the mast cells that you’re safe, but you’ve got to get the triggers handled as well ’cause otherwise you’ve got this other message coming in from mold or VOCs or toxic people. And that was an important thing you mentioned as well, toxic relationships can be just as big of a trigger because of that nervous system mast cell loop that happens and that communication. 

And I tell our clients that are from that deeper processing, subconscious processing and neurology, they don’t know the difference between, there’s a toxic person in our house and there’s a bear in our house. It’s the same kind of stressor. It’s the same, registered as a similar danger, and then people really get that. I have a strategy for these super sensitive people when they’re ready to start an agent to either start something topically or to start with, they put a tiny little, few granules in water, they stir it, then they can take a sip of that water. Or they might even take a couple drops of that water and put it on their food. And we can just gradually introduce it and kinda slip under this hyper vigilance of the mast cell nervous system access.

Tania Dempsey, MD

Correct? Yeah. Oh we, yeah, we do the same thing. All these little tricks to just get their body to accept.

Beth O’Hara, FN

Yeah. Yeah. What about for people that aren’t quite that sensitive? Do you have any other strategies or tricks you wanna share?

Tania Dempsey, MD

Yeah. I mean, I think that in general, the ones that are not as sensitive, you can start them on things orally, let’s say, but I still start slow. I still tell, you know, I feel like patients are more accepting, and they’ve been to doctors who are throwing things at them, “Here, take this, take that,” you know, so I’m always very cautious about, I’ll give you an example like cromolyn is a drug that we use for some mast cell patients. And cromolyn is actually very interesting. Maybe, it may be helpful for the neurologic effects of the mast cell. Actually, there’s no research on that and we don’t even know the mechanism, but I will say that some of my patients who have more neurologic-based symptoms from MCAS sometimes do well, you know, with cromolyn. But cromolyn can also cause, we call it like a tachyphylaxis, it’s like a increased symptoms initially going on it, which could really discourage people from taking it or for continuing it. 

So to avoid that, you know, even patients who are not quite that sensitive, but are still sensitive, I might have them, you know, let’s say they come in eight, I’m sorry. they come in a vial, 100 milligram vial, I might have them take that vial and put it in like eight ounces of water. And then they may take a tablespoon of that, and I’ve calculated, it’s something like two milligrams or four milligrams out of 100 milligrams. And they just do that, and then they discard the rest, and the next day they do it again. And I find that if I do that in patients, either are super, super sensitive or just sensitive, I can sometimes get them through that piece where they may get worse before they get better. They may not actually get worse before, you know, they may not have that, and then I can really figure out if that drug is gonna be good for them or not. It may not be the right thing. But that’s kind of my sort of approach with a lot of things that I do.

Beth O’Hara, FN

That’s a great pearl. So we have, just to summarize; get rid of the triggers, whether they’re physical triggers, they’re emotional triggers, we have to manage the triggers. If you have a toxic job, you have to manage the triggers and work on the nervous system pieces, particularly, we talked about limbic and I think about vagal being involved in this. And then starting to bring on those mast cell supports to calm those mast cells down. And we’re exactly on the same page there. Is there anything else that you wanna share with people or you wanna leave them with?

Tania Dempsey, MD

Yeah. I mean, I think that, like you said, you know, there is a lot of hope, there’s a lot of positivity. This is my life’s work, I want to get people better. I want to give them the tools to help themselves, and then for them to, you know, to hopefully educate other, their practitioners and so more and more people learn about it. So I think there is a lot of hope. There’s a lot of research, right, we’re doing some research, there are others who are doing more. We’re going to figure this out. We’re going to have a better sense of how we can target this issue, MCAS specifically better. I think that, so I’m excited about the future. I think it’s about being persistent and recognizing that if you’re sick, not to just take, you know, a practitioner’s word that you’re probably fine, ’cause they didn’t find anything. I think it’s like, you know, there’s something wrong, keep looking, keep trying. But like I said, those three things, I think, are really important. And, yeah, I think I just wish people, you know, invest in trying to get themselves better.

Beth O’Hara, FN

And we’re light years ahead of where we were even 10 years ago. Light years ahead of when I was bedridden and couldn’t work. And it’s amazing what we can do and what took me 15 years, most people can do in two years now. So it’s fantastic where we are even just now. Do you still take patients, and how can people find you?

Tania Dempsey, MD

My website is AIM, A-I-M center P-M. So it’s AIM Center for Personalized Medicine is really the name of the center, aimcenterpm.com. Dr. Afrin is here, he is still accepting patients. I am accepting patients, a little more limited, but I’m trying to get people in. I have a PA, Dr. Colin Renaud, who’s also working with me and accepting patients. So we’re doing MCAS evaluations. Obviously we’re also, you know, looking at mold and Lyme and all the other things that are important. We do ozone therapy and other IV therapies and bringing in some other things that, or procedures that I think will hopefully help patients get through this and heal. So I have a Facebook page, Dr. Tania Dempsey, and Instagram and all that other kind of stuff. Are you gonna be able to put that in the, they’ll get something with that information with some links?

Beth O’Hara, FN

I’ll just give them the information so they can just go to Facebook.com put in Tania Dempsey, they’re gonna find your Facebook-

Tania Dempsey, MD

Dr. Tania Dempsey.

Beth O’Hara, FN

Dr. Tania Dempsey. Go to Instagram, put in Dr. Tania Dempsey. You’ve got a great Instagram feed over there as well. And then, again, the website is aimcenterpm.com. Thank you so much for taking time out of your busy schedule to be with us, and just the work that you do in the world, and the light and the hope that you bring.

Tania Dempsey, MD

Thank you for the work that you do as well.