98. Environmental Triggers of Mast Cell Disease with Tania Dempsey, MD

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Linda Bluestein, MD (00:03.067)

Mast Cell Activation Syndrome, or MCAS, occurs more commonly in those with conditions involving joint hypermobility, like the Ehlers -Danlos syndromes. Environmental factors can be very important triggers of MCAS, so I am really excited to introduce your guest for today. MCAS and infectious illness expert, Dr. Tania Dempsey, who is board certified in internal medicine and integrative and holistic medicine. In 2011, she founded her own integrative medicine practice,

which has evolved into the AIM Center for Personalized Medicine, a destination medical center in Purchase, New York, focusing on complex, multi -system diseases. Dr. Dempsey is a leading expert in MCAS, dysautonomia, ME/CFS, tick -borne infections, and autoimmunity. She is a newly elected member of the Board of Directors of ILADS, the International Lyme and Associated Diseases Society, and a frequent presenter at their annual conferences.

She is also a member of the US ME -CFS Clinician Coalition and the American Academy of Ozone Therapy. She is an accomplished international speaker, writer, and thought leader. She is well published in the medical literature on topics related to MCAS and also a wonderful friend. Dr. Dempsey, hello and welcome to Bendy Bodies.

Tania Dempsey (01:23.98)

Hello, thank you for having me.

Linda Bluestein, MD (01:26.791)

I'm so excited to chat with you. I've wanted to do this for such a long time. Oh, and I should also mention that you have your own podcast as well.

Tania Dempsey (01:32.46)

Me too.

I do, I do. It's Mast Cell Matters

Linda Bluestein, MD (01:40.039)

Okay, fantastic. Okay, and we'll definitely have a link to that in the in the show notes as well. Okay, great.

Tania Dempsey (01:42.126)

Check it out. Yeah. Perfect. Perfect. And we've had you on our... Yeah, I've had you on my podcast. So this is the perfect reciprocal thing right now.

Linda Bluestein, MD (01:50.439)

Yes.

Linda Bluestein, MD (01:54.311)

Yes.

Linda Bluestein, MD (01:58.791)

Right, right. It's a perfect reciprocal thing. And at the same time, you and I were both on both Mast Cell Matters and the POTScast, right? And the Bendy Bodies podcast discussing the documentary that we're working on as well. So with our other colleagues. So yeah, so this is super exciting now to be able to really dive deep into MCAS and environmental triggers because we know that this is such an important topic.

Tania Dempsey (02:10.19)

That's right.

Tania Dempsey (02:14.99)

That's right, exactly.

Linda Bluestein, MD (02:28.199)

And let's start with infectious diseases. So can you talk about how infections and MCAS are related and how they affect one another?

Tania Dempsey (02:38.478)

Sure. You know, we know that mast cells are really part of our immune system that helps us fight infection. They're our first line of defense against anything that's foreign to us. And so with infections that are either bacterial or parasitic or viruses or fungus, those microbes will trigger a mast cell reaction because that's what mast cells do. They protect us.

from those things. So any infection, any microorganism that is foreign to us is going to set off mast cells. And the way I think about it is we all have mast cells and everybody's mast cells will react to a trigger. I think about COVID because when, especially right at the beginning of the pandemic, as so many people were getting sick,

There were people who were getting COVID, let's say, and were recovering from it. And so the way I think about it is that those mast cells and those people reacted to the infection. It recruited other white blood cells and other things in the body to try to fight off the infection. And then it fought it off. The body, you know, succeeded. And then those mast cells reset, and then they wait for the next trigger, the next event, the next.

toxin that it has to encounter and deal with. But there were people who, and there are people who get that infection and don't recover fully. They continue to have symptoms. And in that case, these are the mast cells that are dysfunctional already. They probably were releasing at baseline some...

some of the mediators, and then there was this major event and trigger of this virus that then set off the mast cells even more. But even when the virus left the body, the mast cells continued to react. And that's really sort of the distinguishing factor between infection in patients with MCAS already and in those who don't have MCAS.

Tania Dempsey (04:59.438)

Either way, mast cells get activated. It's what happens after the infection is taken care of, what happens to those mast cells. So that's how I like to think about it.

Linda Bluestein, MD (05:11.035)

Okay and if somebody has mast cell activation syndrome compared to somebody who doesn't and they both get the same infection, do you think that the person with MCAS that their mast cells react more significantly or they just don't stand down when the infection is cleared?

Tania Dempsey (05:28.462)

It could be both, actually. It could be a more pronounced activation with more mediators causing more inflammation. And then it could be that then it continues to release those mediators and continues to cause inflammation. So it's probably a combination.

Linda Bluestein, MD (05:50.983)

because we all got introduced, I think, to a lot more science than probably a lot of people were used to with COVID happening, of course. And then we were hearing so much about how some people had much worse inflammatory cytokine release. And some people are hospitalized, ICU, and even died that were not necessarily known to be very ill beforehand. So distinguishing who...

is at higher risk is something that of course I think has been much more important in recent years.

Tania Dempsey (06:27.982)

I think sort of to build on this topic or this idea of infections, so I mentioned COVID, which is an acute infection, but, you know, many of us have been exposed to lots of infections over the course of our lifetime. Other viruses like Epstein -Barr virus, certain types of herpes viruses, and then other, we'll call them vector -borne infections, you know.

People have been bit by mosquitoes or ticks or fleas or spiders. There are lots of people listening, right, who have been bitten by something. Those vectors, they can carry various diseases. They can carry viruses and they can carry parasites and bacteria. And they can transmit it. And so we do have an epidemic that's really unrecognized.

of infection that's coming from vectors. Some of the common ones that people may have heard of are Lyme disease, but there are really many, many others, Bartonella, Babesia or Ehrlichiosis Rocky Mountain spot of fever, Tularemia, Brucella. I mean, it just goes on and on and on. With various strains of Lyme -like organisms in the family of Borrelia, there's tick -borne relapsing fever.

So anyway, there are lots of things that can be transmitted, and I think that there are lots of people who have been exposed to these types of infections. Sometimes these infections become dormant. They're not actually killed off, or they're not necessarily completely eliminated from the body. Epstein -Barr also is one of those viruses that people get as mono, and then that virus goes dormant. Some of these other infections, it's the same.

The body deals with it, it goes dormant, but it can get reactivated at any point. And when there's a big stressor, and it could be COVID, and in this case, I see this a lot, that's why I'm talking about it, but it could be a major stressor in a person's life. It could be a divorce, a death in the family, a trauma. It could be another medical condition, surgery.

Tania Dempsey (08:50.798)

you know, the list goes on, implants, you know, I can, you know, think about lots of different things that are triggers from our environment that then can cause some of these things. I think that it does two things. One is it will bring out that, the mast cells and cause them to activate more, but it may actually cause reactivation of some of these infections. And that reactivation of these infections then kind of causes this vicious cycle of.

more activation of the mast cell, which affects the immune system as a whole. Now the body can't really fight the infections as well because it's really dysfunctional because the mast cells are sort of trying to recruit other white blood cells and other cells to help, but again the signals are faulty. And so now the body is, the person is really in this really kind of catch -22.

And then it just kind of keeps escalating and escalating and escalating. And so that's why it's so important. That's why I think that patients who have MCAS need to really understand what is continuing to drive their MCAS. It's not that just treating the infections are gonna make the MCAS disappear, especially if it was there before.

But if there's something making it worse, you have to figure out what those triggers are and whether they're internal, like these various infections that got reactivated or not reactivated, they've just been active, or things from the environment that are bombarding the immune system and the mast cell specifically.

Linda Bluestein, MD (10:33.607)

So other non -infectious things from the environment can either trigger mast cell activation syndrome directly or they can trigger it through a reactivation of a dormant infection. If I'm hearing you correctly, okay.

Tania Dempsey (10:45.87)

Yes, correct, correct. And we see that more often than I could have imagined. The more we test, the more we look. We start to see that patients who have, let's take breast implant illness, patients who have breast implants that develop an inflammatory reaction. So the term that's being used is BII or breast implant illness.

I believe it's MCAS, and there's some evidence to support that. We have an amazing plastic surgeon in Australia who is on my podcast, Dr. Eva Nagy who really has now made it her life's work to help patients with breast implant illness, and she is finding mast cells in the tissue. She's starting to understand the role of implants.

this foreign body in the body and causing the mast cells to activate. So sometimes though you remove that trigger, you remove the implant, and now the mast cells have an opportunity to calm down, to stop releasing chemicals, right? And sometimes that's it, right? That's what the body needed and the body resets, but sometimes what I see a lot is that patients get better and then all of a sudden they start to...

get worse again. And I'm not saying this is across the board. This is a subset I'm talking about. And they get worse again, and we start to look at, OK, there must be some other trigger. So the implant was a big trigger. We took that out. But there must be something else there that now is becoming more obvious now that we removed the other big trigger. And sometimes what we're finding is that there's this other stuff, like Epstein -Barr, like Lyme, like

Bartonella or Babesia, and I'm not saying it's always like that, but that can be a trigger. Certainly mold is another huge trigger that sometimes we see in these inpatients who have these various issues. So, and again, there are others, but other things, but those are the things that I think about a lot, at least in my practice.

Linda Bluestein, MD (12:59.879)

And in people who have either these unresolved or somewhat dormant infections, are those people more likely to have an immune deficiency?

Tania Dempsey (13:13.262)

You know, that's a great question because, you know, it's sort of like a chicken or the egg sort of a way of thinking about it because I think there's a subset of patients who do have a relative sort of immune, I don't know if it's an immunodeficiency or an immune dysfunction. Some of them are born with this sort of predisposition and in many cases I think it is mast cell activation syndrome that's playing a role.

in how their immune system is dealing with infection in general, okay? However, these infections themselves can disrupt the immune system, can suppress the immune system. We know that you can see decreases in total immunoglobulin G or IgG levels with these infections. You can see certain subclasses of IgG go down with these infections.

and they can sometimes resolve when the infection is removed. So again, sometimes it's hard to know which one came first. Is the infection driving the immune dysfunction? Is the immune dysfunction driving the infection? And maybe it's usually a combination, right? Always is in the medicine. Yeah.

Linda Bluestein, MD (14:31.879)

Right, right, that's so often the case. Yeah, definitely. And what kind of infections are you seeing in your practice most often?

Tania Dempsey (14:42.062)

Well, look, I think the viruses are always the common thing to see, we see. I mean, mono, you know, I think the statistic is something like 95 % of adults have been exposed to mono by the time they're probably 30 or 35, right? So you have the mono that you've had that then goes dormant and is sitting in the body. You have...

Herpes viruses, you know, think about chickenpox. Some people have had chickenpox. Some people have had the vaccine. But the virus can, particularly in the case of chickenpox, can go dormant in a nerve and can reactivate later in life as shingles. So I do see shingles quite often as a reactivation of the herpes virus. There's a herpes virus called herpes virus 6.

It's also known as the roseola virus. And again, it's something like 95 % of people have probably by the age of five have been exposed to roseola. They may not know it. I have three kids. I have one kid who I knew had roseola because he had the classic symptoms. I have two that I didn't know they had it, but they all have antibodies to it. So they've had it at some point in time. So I think about it that when I test people, everybody has it, but it can reactivate.

And we sometimes see adults who have reactivation of that virus. So I would say viruses are quite common. I would say fungus infections, yeast infections, either due to external mold exposure or internal. I think of yeast as internal mold. So we have a dysbiosis, an imbalance in the gut from our diet, from the toxins we're exposed to, from antibiotics and other medications. And.

There's so many things that can disrupt our gut and lead to sort of yeast overgrowth. So that is quite common. Parasites go along with that, especially when there's a lot of imbalance in the gut. So, you know, I see a lot of parasites. I think back 10, 20 years ago, you know, I would have thought, you know, well, that's fairly rare. We're in, you know...

Tania Dempsey (17:03.006)

in a country where with sanitation and all this stuff and hygiene, and we shouldn't be seeing it, but parasites are everywhere. So we do see that quite a bit. And because my interest is in vector -borne infections, and I'm on the board of the International Lyme and Associated Diseases Society, and I definitely see a lot of Lyme disease. I'm definitely practicing in an area of the country where it's endemic. But it's not just about the Lyme.

And this is what I hear all the time. You know, I'll hear people say, well, I'm in Colorado or I'm in another state. We don't have Lyme there. You do because there are cousins to Lyme that are there. So we have, Lyme is Borrelia burgdorferi. We have Borrelia of other species all over the country and all over the world. Okay, it's not theoretically Lyme disease because it's a different species, but.

can cause similar symptoms and can make people sick. And then we have these other infections. Bartonella, by far, is the thing that I'm most concerned about because it is a bacteria that is transmitted by so many different types of vectors. It can be transmitted by ticks, like Lyme, but it can be transmitted, as I said earlier, spiders and fleas, lice, mosquitoes.

It can be from cat scratches, or from dog scratches, or dog bites, or cat bites, and other mammal bites or exposures, especially if those animals have had fleas, because fleas are a big carrier for Bartonella. So Bartonella is found, if you look at a map of the world, it's found everywhere. It's in sub -Saharan desert, and it's in Africa, and it's everywhere. So...

That infection really we do see quite often, unfortunately. And the more we look, the more we find, the more we realize that this is really of epidemic proportions because of how easy it is actually to contract. So anyways.

Linda Bluestein, MD (19:21.081)

Do you think these infections in general are getting worse over time then?

Tania Dempsey (19:27.79)

So this is the question that, you know, a lot of us talk about and raise. And I think it's a combination of things. I think maybe our, the technology is better at detecting it and picking it up, right? So maybe we're able to identify it better. So that's always the thing we think about with certain diseases when we say, are we seeing more of it or are we just diagnosing it better, right? So maybe there's a.

part of it that's that. But I do think that because the world we live in is different than it was 100 years ago, 200 years ago, 1 ,000 years ago, there are things that we're exposed to that has changed our immune system. So I think part of it is how our own immune system is dealing with our environment. And I think that the environmental changes, climate change and other things, are affecting

the insects and the ticks and the other things we're seeing and so that we have a greater potential for exposure. We also know that with climate change, for instance, you know, I think back when I was a kid, in the wintertime, it was frozen. Like in New York, it was a frozen tundra, as far as I'm concerned. At least that's how I remember it. It snowed a lot. It was frozen. It was cold a lot for months and months and months.

Now, this winter, we've barely had any snow. It's 50 degrees, it's 55 degrees today actually in New York and it's February, right? So what's happening now is that the ticks are living and people are still going outside with their animals, their dogs, and they're still spending time and getting exposed. Whereas when the ground is frozen, the ticks do.

you know, kind of, they're dormant and not, you know, again, biting people and transmitting infections. So that's a big issue. And I think that that's, I'm simplifying it, but I think that this is going to lead to greater illness and infection overall over time. Even viruses like COVID, for instance, right? We still have, we're gonna have another pandemic, unfortunately, at some point.

Linda Bluestein, MD (21:52.807)

Yeah, yeah. And you know, obviously, things like air travel are wonderful and incredibly convenient. But of course, they're also basically vectors of a sort that allow that the transmission of different infectious illnesses much more easily from area to area, whereas before we were doing all of that, sure things were more contained.

Tania Dempsey (22:18.098)

Exactly. Yep. Another good point.

Linda Bluestein, MD (22:20.647)

So in terms of these infectious illnesses that you see, how do you address them?

Tania Dempsey (22:28.366)

Well, you know, it's complicated, right? And there's no right answer in terms of, you know, every patient I'm going to approach a little bit differently. I always want to understand the host. That's the person who has these infections, right? I think this is really the most important thing, and it's underrated, okay? I have patients who come to me and...

they carry this sort of their diagnosis as if it's them, right? So they have Lyme disease, I have Lyme, and I'm sick with Lyme, and it's become their identity. And the problem is that I don't doubt that they're sick with, I know they're sick with Lyme, I know they probably have other things other than Lyme though, but I also need to understand why they're still sick with Lyme. Is it about the infection? Is it about their...

immune system, is it about their nutritional status, their metabolic status, there are all these other things, their toxic load, there are all these things that I really have to consider when we're dealing with infection. So for some patients, the foundational work is set. You know, they eat well, they're doing everything they can, but they're sick, and I've got to go after what is making them sick.

But I'm going to support if they have MCAS, and really based on some retrospective data that I've put together, I mean, about 90 percent of my MCAS patients have underlying infection. So that's a big number, okay? Again, that's my practice. That's my practice, though, right? So, you know, I was careful to say, I don't know if that's what everyone's practice is like, but in my practice, it's a big number. So.

Linda Bluestein, MD (24:11.591)

That's a huge number. Yeah.

Tania Dempsey (24:22.126)

I'm going to treat their MCAS. I'm going to make sure that I stabilize them the best that I can, given the fact that the infection may be making their MCAS worse. So there may be only so much I can do. But there are times when actually stabilizing the mast cells helps the immune system so much that the infection is just so much easier to deal with. The body just seems to be able to handle it. And then,

maybe I don't have to be as aggressive in treating it because everything sort of falls into place. There are other times where I need to be more aggressive with the infection because I can't get the immune system and the mast cells and everything else back on board because everything, because the infection is just constantly, you know, driving it and is causing so much, wreaking so much havoc. So again, the approach really does change from patient to patient. And I think that's why it's so important to,

you know, take the type of history that I take, you know, three hours of really digging and understanding all the nuances of the, first, the chronological stuff that's happened in a person's life, and then also, you know, what is setting the stage for them to be at the point where they're at? And I think once you understand that, you do the appropriate testing, then you understand, okay, this patient is going to need

Maybe it's antibiotics. You know, there's a relatively new protocol that we use for some patients who have these vector -borne infections called the Dapsone protocol, high -dose Dapsone protocol. There are other antibiotics sometimes we have to use, especially if there's an acute infection. Sometimes there's antivirals if there are viruses involved. So sometimes it's pharmacologic. Sometimes it's because I have an integrative background. Sometimes I want to use.

herbs or I want to do ozone therapy or I want to do, we have this other therapy called the SOT therapy, which is supportive oligonucleotide technique. And that can, this is a type of treatment that can target infections on a molecular level. And that's been really, really incredible for a lot of patients. Sometimes I'm combining things. And of course, always setting the stage and making sure that the foundational.

Tania Dempsey (26:45.07)

stuff is in place. If the patient is eating McDonald's and I'm trying to treat their Lyme, I'm telling you, it's just not going to work. It's just not going to work. I'm sorry.

Linda Bluestein, MD (26:57.767)

And how hard is it to get that kind of behavior change if they I mean I would imagine a lot of people who are coming to see you are already following some better dietary practices because they've probably been sick for a while and they've probably been trying a few different things and they've probably made some kind of association. I feel like when people make that association it motivates them to make some positive behavior change but otherwise does that happen very often that people

Tania Dempsey (27:14.51)

correct.

Linda Bluestein, MD (27:27.047)

actually come to you and you're trying to do some of these various different techniques and their dietary practices are getting in the way of their healing.

Linda Bluestein, MD (27:45.191)

Oops, mistake.

Linda Bluestein, MD (27:51.271)

It's saying it's trying to reconnect. Okay, I said the word mistake.

Can you hear me?

Tania Dempsey (27:57.902)

I'm losing you. Yeah, I lost you.

Linda Bluestein, MD (28:01.127)

Can you hear me now? Okay, so that's actually okay, because that question I think we can take out anyway. So I said the word mistake, excuse me, so that we can find it and I'll just move on to the next thing anyway. So yeah, sometimes that happens and I'm glad that you caught it right away so that you also stop talking because sometimes, if your video ever gets a little bit blurry, don't worry about that because...

Tania Dempsey (28:08.782)

Okay, okay.

Tania Dempsey (28:13.87)

Okay, okay, okay. Gotcha.

Tania Dempsey (28:21.174)

Yeah.

Linda Bluestein, MD (28:28.295)

the actual recorded video is of higher quality than what you can see in real time. Okay.

Tania Dempsey (28:32.15)

Oh, okay, good.

Linda Bluestein, MD (28:37.415)

So what other environmental triggers should listeners be aware of?

Tania Dempsey (28:43.148)

You know, it can be overwhelming, but I think there are some simple things that people can start to look at. You know, I mentioned mold. Mold is not that simple. But I think it is important to understand your environment. If you've had water damage, that's the biggest red flag. If you've had water intrusion into the house somewhere in the ceiling, if you're in an apartment and you see something on your ceiling, that means that somebody above you had

some water that is leaking down, that's gonna be harboring mold potentially. In the bathrooms, there are certain places where there are a little bit higher risk of having mold growth. And so people need to be aware of it, look for it. And sometimes extensive remediation does need to be done. Mold is toxic, mold releases toxins called mycotoxins. And...

those mycotoxins can make you quite sick. And they, some of them are neurotoxic and they affect the nervous system. Some of them are endocrine disruptors and they can affect the metabolic state of the body. It can affect some of them bind estrogen receptors and can cause a whole host of issues there. Some of them cause weight gain and insulin resistance. So, and they make you sick, you know, so.

That's something that if your MCAS is not well controlled or maybe you don't even know if you have MCAS but you know that you're sick and you can't figure out what's going on, that's a place to start. Again, look at what's around you, what you're breathing in. Sometimes it's not the house, it's the office. I've had patients who narrow it down to where they spend a lot of time during the day. I work.

And that's a tough situation, but there are solutions. And so that's just one thing. The simpler things that people can look at, I think about plastics. Plastic water bottles are my least favorite thing. They really, really get me. It's interesting because I have patients who are sensitive to various plastics. Actually, plastics are...

Tania Dempsey (31:09.07)

are a very big trigger for MCAS patients in various forms. But interestingly, like I'll have patients who have issues with certain plastics but not other plastics, or they can only drink water out of a certain plastic from a certain company, but not water from a different water bottle company. But in the end, plastic in general is going to be problematic. Plastic leeches, even the plastics that they say are BPA -free, they now use...

Linda Bluestein, MD (31:36.007)

Mm -hmm.

Tania Dempsey (31:38.966)

BPS and there are a few other plastics that they sort of get around and they say, you know, these are safer, but they actually have been shown to have similar effects. They can be endocrine disruptors and cause mast cells to degranulate and activate and cause problems. So I think about plastics in the environment and just, you know, what can you do to minimize that? You know, can you think about food storage stuff?

eliminate the plastic containers made by various companies out there, GLAD, Ziploc. They all have these very convenient containers, but they have really nice stainless steel containers, glass containers that you can store your food. You definitely don't want to microwave food in plastic. That's a huge pet peeve of mine because that plastic, even though they say this is microwave safe,

Linda Bluestein, MD (32:31.079)

Yeah.

Tania Dempsey (32:36.302)

I'm going to tell you right now, it's not, which is really unfortunate. So those are simple things because plastic leaching into your food can trigger mast activation syndrome. We now are aware of microplastics. We know we're contaminated with these microplastics. So that may be why we're seeing a rise in MCAS overall. I mean, is it the microplastics? Is it?

the other toxins in the world. Think about cashier receipts. You know, they're coated with this type of plastic type of, I forgot the chemical name, but it can actually leach through your skin and go into your bloodstream. So like when people hand me, I don't even take those receipts. I don't need the receipts, you know, because most of the time, right, I'm getting a receipt on my email or something.

right? So like those are just simple simple things that could make a difference. You know, I think thinking about the food that you're putting in your body, I think this is this is this is a little bit more difficult because not everyone has access to good quality food. Not everyone can afford good quality food. So I just think we have to, I'm hoping that there will be ways for people to get affordable food that is, you know, grass -fed meat,

Linda Bluestein, MD (33:34.535)

Right, right.

Linda Bluestein, MD (33:50.215)

Great. Great.

Tania Dempsey (34:03.038)

pesticide -free, you know, vegetables, things that are safer to eat because those things are affecting our bodies overall. And limiting, to me, a trigger, a big trigger is sugar and simple carbohydrates. We know that it's interesting, mast cells are involved in our metabolic process.

So, you know, one of the things that I see quite often as one of the side effects of MCAS for some patients is either weight loss or weight gain. And the question is always, you know, why did I lose weight so quickly or gain weight so quickly? Because the mast cells are involved in that process. They're involved in insulin resistance. And, you know, what's fascinating, they did this study. I like to talk about the study with my patients because I think it kind of makes it clear. They did this study with mice.

And they had mice that were mast cell free. Okay, now how they did this, I don't know. Okay, I don't know exactly how you raise mice without mast cells, but there is a way to do that apparently. And then they have the mice with mast cells and they feed them a Western, you know, equivalent of a Western diet, you know, a standard American diet, SAD So the mice without mast cells do not gain weight. Their weight stays the same regardless of...

the crappy food that they're being fed. The mice with mast cells gain weight very quickly when exposed to a SAD a standard American diet. So we know that mast cells are needed for this process of weight gain. We know it's involved, again, in this insulin resistance metabolic syndrome. So the better we can control that, okay?

We can't remove our mast cells, but if we can remove those triggers like sugar, which causes the insulin to rise, insulin binds to the mast cells, can activate it, sugar can bind to the mast cells and activate it. So if you can keep your blood sugar stable, eliminate the constant pumping of insulin out of the pancreas, I think that can have a dramatic effect on...

Tania Dempsey (36:24.334)

stabilizing mast cells. That's why I'm a big fan of the carnivore diet. I talk about that a lot. That may not be for everybody, but I love the idea. It's the way I eat. Eating meat stabilizes blood sugar, reduces inflammation, calms down mast cells for a lot of patients. So anyway, that's my quick and dirty, what people can do to start thinking about things that you have control over, right? Because I think...

I think what's overwhelming sometimes is just that it feels like so much is out of our control. When patients are sick with MCAS, it just feels like the body was taken hostage and it was just doing its own thing and breaking down. But I do think that there are things that we can control and help that over time could lead to better health.

Linda Bluestein, MD (37:00.039)

Right.

Linda Bluestein, MD (37:18.247)

And I think having some of those easier things to be able to implement are really, really huge. What about things like air purification? What do you think about that?

Tania Dempsey (37:27.438)

Yeah, yeah, I think that's important. And I think, like the way I think about it, it can't hurt, but it can only help. And especially if you're not sure about your environment or you don't have control over the environment. I think about college students. My son is in college and I will tell you that the dorm is moldy. I know it is. I can smell it.

He knows it is, people who live in his house are all like, know, sinus infection after sinus infection after, right? I know that mold is a problem. So I can't, you know, I can't control everything, but he has, you know, one of those air doctor, air purifiers. And I think, you know, he feels better in, as long as he's in his room, he feels better. So I think that, you know, again, it's not a perfect solution, right? It's not gonna remove all the mold and...

mold toxins from the air, but it can purify the air at least enough to make it more habitable and have a less of effect on the mast cells. So why not?

Linda Bluestein, MD (38:36.711)

And you pointed out very appropriately so that not everyone can afford high quality food. If someone though can afford to buy organic fruits and vegetables versus non -organic, do you think that is worthwhile? Because you know, you also hear people say, well, if they're next to a non -organic farm that is using regular pesticides that, you know, are potentially cross contamination through the soil or the air.

Tania Dempsey (38:56.974)

Yeah.

Linda Bluestein, MD (39:03.463)

Do you think that's a worthwhile thing to do? Does it depend on if it's, you know, the quote dirty dozen or what are your thoughts on that?

Tania Dempsey (39:10.606)

Yeah, again, I think, yeah, there's no guarantee, right? That's the problem. Unless you're, you know, it was much easier back in the day when you knew the farm, you know, where the food is coming from. Now you don't know, right? A lot of the food is coming from Mexico or, you know, other places where, you know, you don't really know what the farms look like. But if they've gone through the certification process, you know, it's hopefully a little bit safer. I do think that you should concentrate on those.

Linda Bluestein, MD (39:16.391)

Mm -hmm.

Tania Dempsey (39:39.246)

those foods that we know are more likely to carry more residue from pesticides. There are some things, if you have to peel the skin off of something anyway, that's gonna be a little lower risk, but I usually recommend you wash the produce so you eliminate some of the toxins or the pesticides so that when you take a knife and you start to, let's say peel, let's just take an apple, for instance.

if you're peeling that skin, if you don't clean the outside, when you're peeling it, you're actually exposing the apple to the pesticide that was on the outside, right? It doesn't, it's like, you know, some people are like, well, I never thought of that, right? But it's like, it's kind of weird. So there are things that you can do, you know, to minimize that way, but I think you do the best you can, you know? And again, I...

Linda Bluestein, MD (40:16.455)

Right. Right.

Tania Dempsey (40:35.246)

I think that meat and protein is really like the most important thing that people can eat. I know that, you know, people, there are going to be people listening who have various food intolerances from their MCAS, and I realize that, right? But if you can tolerate animal protein, that is going to be to your advantage to ingest as much protein as you can.

gearing towards like one gram of protein per like lean body mass or body weight, the easiest, you know, 120 pound person, you know, should try to get close to 120 grams of protein or at least 100 grams of protein. And I'm saying this because it's not that they shouldn't eat fruits or vegetables, but that's another conversation. I'm not sure if they should eat fruits or vegetables. I'll be honest with you. And I think maybe there's some in...

some specific ones that may be better than others. But the most important thing for our overall health, for maintaining muscle mass, for maintaining overall health, study after study after study, has shown that protein is the most important thing. So that's what I would concentrate. So if it's too expensive to get, let's say, certain organic vegetables, and you know you need grass -fed or cleaner

type meat, at least meat that, let's say, doesn't have antibiotic exposure or, you know, there are various, you know, levels, right, of meat. The better quality meat that you can get is going to be much more important, I think, than worrying about, you know, filling up on pesticide -free vegetables. But I know that my opinion is not one that others share, a lot of others share. It's up to you.

Linda Bluestein, MD (42:30.535)

Yeah, and it's interesting because I have quoted you a number of times to some of my patients who are vegan. And of course, you can follow a vegan diet that's not plant -based, right? I have had vegan patients who are eating like cereal for multiple meals. So technically vegan, but that's not a plant -based diet. But I have shared that information because I remember you saying that.

Tania Dempsey (42:45.806)

Right. Right.

Linda Bluestein, MD (42:56.965)

very first time I met you in person at the Mast Cell Conference in Broomfield. And I'm curious to ask then too, what do you think about fish versus meat for some people if they want to avoid other types of meat products? What about if they eat fish instead?

Tania Dempsey (43:11.886)

Yeah. Yeah, no, I think it's still animal kingdom. So it's still from an animal which has the right type of amino acids. It's a complete protein. It's going to assimilate differently. The problem with plant proteins is that they're not all complete. And you have to really work on making a complete protein. So fish is great. The downside of fish is the...

toxins actually from the fish. So mercury is an issue for certain like fattier bigger fish. We have to watch out for swordfish, tuna, mackerel, halibut. I'm probably forgetting those are like the big ones that I say, you know, just really try your best to avoid because I because then you know, you're

exchanging one problem for another problem. Then you have mercury toxicity. I've had patients with mercury toxicity who have had really severe MCAS triggered by the mercury. So again, you have to be careful. But if you can get lighter fish that you know is going to be lower in mercury and lower in toxins, then I think, yeah, I think it's a great source. My favorite sardines are tiny.

They're a great source of protein. Anchovies, also small. Salmon, it depends, actually. There are some types of salmon that will be higher in mercury. And I've had patients who really are eating only wild salmon and have had really high levels of mercury. So I love salmon, but you do have to kind of know where it's coming from.

Linda Bluestein, MD (44:51.175)

Hmm.

Linda Bluestein, MD (44:57.511)

And how are you testing their mercury levels? Is that through a specialized lab or how?

Tania Dempsey (45:04.238)

You know, I do it a few different ways. Generally, I'll just do it in the blood. You know, you can get a view of what's going on, what's in the bloodstream. It's not perfect, but it's a good screening. If I'm really concerned, I might do a urine collection through a special lab. I might do something called a provocative test, where you give them something to sort of...

detox the mercury and then you catch it in the urine. But I, you know, it varies, but generally I can, if I'm suspicious, I'll find it and then I'll know what to do with it. And for some people, it's avoiding the fish for a while to sort of get their mercury levels down. You can't ever really get rid of mercury. This is the problem. That's why some of these big fishes have mercury. They, mercury just is inert in a way, right? It just stays in the body. The liver has a very hard time.

for most people at getting detoxed out. So the longer you go without fish, you can detox a little bit, but I don't know if you ever, like if you eat swordfish, for instance, a couple of times a year, for several years, you'll have enough mercury for like a lifetime, and it will be almost impossible to get rid of completely, although there are tricks that help.

You can detox, but it is a little bit harder. So I always say, just be careful with what you're putting in your body. Sushi is a concern, especially because a lot of people eat tuna sushi. Tuna, again, is really high in mercury. But the other problem with sushi, not to get too far off topic, is parasites. So raw fish can be problematic. And I had a patient recently who had a tapeworm from sushi.

Linda Bluestein, MD (46:49.413)

Mm.

Tania Dempsey (46:59.47)

So, oh gosh, that's not fun. So yeah, raw could be a problem.

Linda Bluestein, MD (47:01.925)

Yeah.

Linda Bluestein, MD (47:08.135)

Well, that's amazing because I feel like that's become more popular in a lot of places and with certain groups of people. And I literally was actually at someone's house recently and had some sushi and actually was up all night like feeling really, really terrible. Yeah, interestingly, I don't know, I don't think I had food poisoning per se. It felt more like a mast cell reaction. Yeah, so anyway, that's really interesting.

Tania Dempsey (47:35.886)

That's interesting. And was it tuna that you had?

Linda Bluestein, MD (47:42.183)

Some of it was tuna, yes.

Tania Dempsey (47:44.812)

You know, there is a reaction that is called scum, scum, I can never pronounce it, scum broid food poisoning, which is really like the fish is contaminated with actually a lot of histamine. And then if you eat the fish that, and usually it's, there's certain fish, tuna is one that carries it, can carry it.

You basically can get it, it could look like a mast cell reaction or just an acute histamine toxicity reaction. I've seen a few cases in my day in the ER. So I wonder if it was something like that.

Linda Bluestein, MD (48:20.551)

Hmm.

Linda Bluestein, MD (48:27.399)

I almost went to the ER. I mean, it was, I had such severe abdominal pain and dry heaving, but not really like the other kind of more classic signs, but it was, it was a very, very rough night and then a couple of days. Yeah, that's really.

Tania Dempsey (48:30.318)

Yeah, good.

Tania Dempsey (48:43.886)

Yeah, so I wonder if you had scombroid poisoning. Because what happens is it's when the fish is not that fresh and it's sort of sitting around and then the bacteria grow and then they produce more histamine. And that histamine gets really concentrated and then that's that kind of reaction. Yeah, but you could be really sick from that. Oh.

Linda Bluestein, MD (48:50.789)

Mm.

Linda Bluestein, MD (48:57.573)

Mm -hmm.

Linda Bluestein, MD (49:03.911)

Yeah, that's really interesting because some of the other people, as far as I know, no one else actually had any kind of a reaction, but I have by far more active mast cells than anyone else who was there. So I think it would make sense that I would be more susceptible. So, okay. Yeah, I'm doing much better now, so that's good. So I'm really excited to jump into some of our listener questions. We had a lot of...

Tania Dempsey (49:10.158)

Oh.

Tania Dempsey (49:19.63)

Yeah, yeah. Oh, I'm sorry to hear that.

Gosh.

Linda Bluestein, MD (49:30.887)

really, really great questions that came in. I do want to ask people if you're watching this on YouTube and if you're enjoying this conversation to please hit the like button because that will help other people find the show. And we want everyone to be able to have access to this information, this fabulous information from Dr. Dempsey. Okay, first question from one of our listeners is, do you have any concerns about long -term antihistamine use, especially in regards to dementia?

Tania Dempsey (50:01.262)

I really don't, and I know that there have been a few reports in the literature about antihistamines like Benadryl potentially causing dementia. The problem with those studies is that they were sort of retrospective studies. They were looking at people who had been using it, and I have a lot of concerns about that because we don't know if those patients...

had MCAS, and that's why they were using those antihistamines long term. We don't know anything else about their risk factors. And so they went and they just reported, oh, you know, people who take more antihistamines may be at higher risk. I think that patients with MCAS may be at higher risk of maybe dementia, right? Dementia is an inflammatory actually process, even though we don't think of it like that.

There's inflammation in the brain, and I wonder if a subset of those patients are really having a problem because of underlying MCAS as opposed to the treatment causing the problem, right? So we have to be careful with that. Now, that's not to say, you know, now people listening are going to be all concerned that, oh, my God, they're going to get dementia because they have MCAS, but I'm just saying that that may be what would explain some of the findings. What I think is most important is that

Linda Bluestein, MD (51:07.591)

Mm. Mm.

Tania Dempsey (51:24.014)

your mast cells are as stabilized as possible. The more stabilized your mast cells are, the less inflammation you have in your body, the healthier you are, the less inflammation you have in your brain, the less, you know, I see that as theoretically, antihistamine should actually reduce the risk, you know, if used appropriately. So, yeah, I'm not concerned. I do think that...

Again, I think it's just much more important for people to be stabilized and to worry about these studies that are really not, were poorly designed and not really looking at what we really need to look at. It's like, I sort of equated to these studies that looked at meat as the cause of colon cancer. Meat does not cause colon cancer, even though that's what the media wants you to believe that some of these studies showed. In fact, those studies were very.

poorly designed and there are lots of other problems with it. And so the same is true for these antihistamine studies. So I just, you have to take it with a grain of salt.

Linda Bluestein, MD (52:30.599)

Right, right, makes a lot of sense. What about somebody who has reactions either to laundry products or facial products? What do you suggest your patients do in that case?

Tania Dempsey (52:43.084)

You know, there are so many options nowadays, and so I would say that finding products that are as pure as possible and have the fewest ingredients, hopefully you could find something that works. There are natural products out there. I will say that my patients react to, and when you look at the list of ingredients, excuse me, theoretically they're natural, but there are like 50 ingredients to make that natural product.

And inevitably there's going to be something in there that's going to be a problem. So things that have the fewest ingredients, unfortunately you do have to be pretty on top of it and really like reading everything with a fine -tooth comb. You're really being very careful. But you can find things. And then I think there are ways you can make products that if you need for cleaning that contain only what you can tolerate.

But the point is that I think generally speaking, the better your mast cells are controlled, the better you tolerate the environment and these various things. So I'll give you an example. I have patients who are very sensitive to scents and various fragrances and things like that. And that's actually very common in MCAS patients. But I have a subset of patients who sort of outgrew their scent.

So, in other words, they don't love it, but they will not have a reaction because I've stabilized their mast cells, I've treated their infection, if it's an infection, or whatever I'm doing, I'm getting them into a better place. And then they realize that they're not as reactive to the environment or they can eat more foods that they were reacting to in the past. So, the same is true for, let's say, laundry detergent and these other things like...

Linda Bluestein, MD (54:33.893)

Mm -hmm.

Tania Dempsey (54:40.204)

Theoretically, if you're that sensitive, the goal should be to continue to work on finding ways to stabilize yourself so that hopefully with time you are more tolerant to the environment. But it is hard. I mean, I will acknowledge that's not an easy task.

Linda Bluestein, MD (54:57.511)

Okay. And what kind of results are you seeing from Omalizumab or Xolair?

Tania Dempsey (55:04.27)

So, you know, it varies. I think it's been really helpful for a subset of patients. I have really yet to identify, you know, why certain patients do so amazingly well and why others may not notice as much of a difference. But, you know, it's a tool. I look at it sort of like, well, you know, how good is Claritin? Well, I...

Claritin can be a game changer for some patients. I've seen it, and for other patients, nothing, right? And so the same is true for Xolair. It seems so, you know, individualized, and that's actually the problem with MCAS is that it really is so individual and so different in every person because everybody's mast cells are different. They release different mediators. They respond. They have different receptors. If we could figure out...

what anybody's particular mast cell is doing, we could target treatment better, right? That's the wave of the future. We have to be able to figure out who is a Xolair candidate really and who isn't. We're not there yet.

Linda Bluestein, MD (56:11.237)

Mm -hmm.

Right, right. And someone else asked, what are treatment options after failing Xolair

Tania Dempsey (56:23.438)

Well, you know, it really depends on a lot of things, right? It depends on what else they've tried, right? I don't have a specific order that I try things in. So for some patients, Xolair is early on. Maybe they haven't tried ketotifen or cromolyn or LDN, or maybe they've tried all those things and then they're at Xolair. So it just really, yeah, it depends.

Linda Bluestein, MD (56:29.063)

Right.

Right. Right.

Linda Bluestein, MD (56:46.535)

Yeah, no, that definitely makes sense. And then sometimes I, it seems like there are people too, that can react to the Xolair and maybe they're having a reaction to the excipient or something like that. And so maybe just removing that and like you said, trying some other treatments may be beneficial. So, right. What about food dyes? What are your thoughts about food dyes related to MCAS?

Tania Dempsey (57:04.078)

Yep.

Tania Dempsey (57:12.142)

Yeah, I mean, I hate food dye, period, whether you have MCAS or not. But yeah, I mean, it should be avoided. I think, look, there are patients who I have who can tolerate certain medications. They're blue, they're pink. I'm shocked, you know, they're fine with that. So it's not across the board. Again, every MCAS patient is different. Every MCAS patient is going to have different triggers. So dyes can be perfectly fine.

for some MCAS patients who are sensitive to other things. In other cases, we have to compound the drug to eliminate those excipients like the dyes. So again, varies. But generally, I would love there to be a time when, I'd love it when there would be a time when we can make drugs without dye. I don't know, I mean, or food without dye. Like, is it really that necessary? Yeah.

Linda Bluestein, MD (58:11.047)

Right, right. And what about EMFs, electromagnetic fields, and how they might relate to MCAS?

Tania Dempsey (58:18.478)

Yeah, there are people who are more sensitive to EMFs, and there are various reasons. I mean, mast cells are really sensitive to a lot of things. So they are sensitive to barometric pressure. They're sensitive to EMF. Again, some people are going to be more reactive than others. Some people have to be more careful. They can't use Bluetooth devices or phones and things like that.

You know, generally though, in my experience, a lot of those patients actually have other underlying issues like mold or Bartonella, sometimes both. Those are, that's always a little bit of a red flag for me that they should look for something else. And because while mast cells alone, sure, they can be reacting to EMF, I often see that it's never just the mast cells in that case.

Linda Bluestein, MD (59:13.543)

Okay, and this question I really liked. Why do so many doctors fail to believe in MCAS?

Tania Dempsey (59:22.126)

Yeah, that's a great question.

Oh, yeah. I don't, well, you know, it's hard, hard to know. I believe in it, right? You believe in it. So it's hard for us to not like to understand why it's so difficult to believe or understand. It's so, so simple, right? The pathophysiology just, it just makes sense. I don't know why, why, you know, they can't wrap their head around this. I think that, you know, it's unfortunate that I think the medical profession,

Linda Bluestein, MD (59:34.055)

Right.

Tania Dempsey (59:54.886)

defaults to a couple things. One is they default to sort of old knowledge, even though a lot of doctors think that they are cutting edge, you know, they're trying to keep up with the medical literature, you know. Generally speaking, you know, what they learned in med school is what they kind of keep with them. And, you know, did you learn about mast cells in med school? I don't recall learning about mast cells in med school, to be honest with you.

Linda Bluestein, MD (01:00:21.255)

No, I don't recall it either.

Tania Dempsey (01:00:23.662)

So I think that's part of it. So part of it is just like the training, then you get to a certain time, and then you just, it's hard to change your way of thinking. I think you need to be a certain person and have a certain personality to kind of think outside the box and to think, okay, maybe there's more. I think that a lot of doctors are overwhelmed with insurance, being paid, these big medical groups are really,

you know, handcuffing doctors in a way that they can't really spend a lot of time with patients. This is a very complex process, disease process, and so, you know, you can't really treat a patient in five minutes with MCAS, you know, but that's what a lot of doctors have time for. So it's easier not to acknowledge it than to acknowledge it, right? It's much easier for them to write a script for something, you know, you have high cholesterol, here's your Lipitor, it's much easier to do that.

Linda Bluestein, MD (01:01:08.295)

Right.

Tania Dempsey (01:01:22.35)

and to talk to the patient, to listen, to then go home and think, wait a second, this patient, that's interesting. I don't know, that doesn't make sense with anything I know, so I'm gonna read more about it. They don't do that, they should do that, that's what I always did. I'm sure that's what you do. So I think it takes a special person in the medical field to really start to wanna learn and think outside the box.

Linda Bluestein, MD (01:01:52.263)

Yeah, I totally agree. I mean, I think, you know, we're taught so many things, and I think we're, you know, we're taught them in a way such that this is the truth. And of course, science continues to evolve. But I feel like it almost takes even more inertia to make us change our mind about what we were taught at that early stage, as compared to, you know, I don't know, it just seems like it requires a lot more evidence, maybe.

Tania Dempsey (01:02:01.74)

Yeah.

Tania Dempsey (01:02:23.092)

Right.

Linda Bluestein, MD (01:02:26.919)

Okay, someone else asked what pre -flare warning signs should people look out for?

Tania Dempsey (01:02:34.542)

Yeah, and some people have no warning signs. So it's not typical. Some people do, will notice, you know, it could be a little tingling in their mouth or their lips or their throat. It could be a little itching. It could be, you know, they get a headache. Again, really hard to answer because it's just so individual. So it's really, that's the type of thing where you really want to talk to.

whoever's treating you for MCAS, if you could find somebody who's willing to think about it and work with you, then they can work with you to sort of identify first what your triggers are and then what your reactions are like so that you can kind of anticipate. But the reactions are so varied across patients, you know?

Linda Bluestein, MD (01:03:23.143)

Sure, sure, definitely. And what about immunotherapy for allergies? More traditional, what we think of, you know, for environmental allergies and maybe food allergy as well. But do you think immunotherapy is often helpful or is it more likely contraindicated?

Tania Dempsey (01:03:41.518)

Yeah, you know, I've seen it both, actually. I have a fair number of patients who have done really well with immunotherapy. And so, you know, for the right person, right candidate, the right symptoms and allergens, right, it makes sense. And again, I've seen that. And I've seen patients who have not done well with immunotherapy. And in some ways, I see maybe...

their mast cells get a little more activated. For some of them, it's in the short term, and some of them, yeah, it's just not going to work out for them. But I think it's a good tool. You know, all these things are things that depends on the patient, you know?

Linda Bluestein, MD (01:04:24.295)

Right, right, absolutely. And this is an N of one, but for me, immunotherapy for my allergies and asthma and everything was a huge game changer. I mean, you know, just absolutely hugely beneficial. That was a long time ago. What about people who are, who react to heat, sun, exercise and triggers like that? Do you have any suggestions for how they can manage that, especially in the summer?

Tania Dempsey (01:04:56.046)

Yeah, no, that's a huge, huge thing. I think that temperature regulation is a common problem. And, you know, it's really about, you know, figuring out how to dress appropriately, you know, in layers, preferably. Sometimes that helps. You can take layers off if you're too hot or you put layers back on if you're too cold. But, yeah, you know, it's really just figuring out.

temperature in your own house and your own apartment, trying to figure out what, you know, have patients who need to turn the thermostat down to 60, 62 degrees, 63 degrees to sleep, because they needed much colder, regardless of the season. So, you know, and again, doing whatever you can to stabilize your mast cells and continuing to look for your triggers, the big triggers that are.

driving that continued mast cell activation, I think, is going to be key because ultimately, once you have that in place, then the temperature stuff gets better. The other thing I think about with temperature regulation issues is infection. Babesia, babesiosis, is a parasitic infection that you can get from ticks, mosquitoes, things like that. And it is a cousin to malaria, and it has an interesting sort of life cycle.

the way it infects the red blood cells and when it releases from the red blood cells, it causes a sort of a heat intolerance. And so, hot flashes, heat intolerance is actually a common symptom related to babesia. So, if I have patients who I've treated their mast cells and they're still having a lot of heat intolerance issues, I'm going to be testing that and making sure that I don't have to...

deal with, treat that because when that's dealt with, it's interesting, like so many of their other symptoms get better.

Linda Bluestein, MD (01:06:58.727)

And I'm glad you mentioned about testing for these infections because if you could just comment on that briefly, isn't the testing of some of these things also particularly challenging?

Tania Dempsey (01:07:10.574)

It could be. Yes. Yes. I mean, the answer is yes. It can be challenging. You have to know what you're testing for. You have to understand what the patient's, what your index of suspicion is. So, you know, if I have a high index of suspicion based on symptoms, it's going to be, I'm going to interpret tests a certain way.

Linda Bluestein, MD (01:07:30.471)

Mm -hmm.

Tania Dempsey (01:07:39.03)

Antibody tests are definitely a little more challenging than molecular tests. Molecular tests that are looking for PCR or FISH, I think, are better. I feel a little more confident when I see, let's say, a FISH -positive babesia test because then I know that that's an active infection. And so there's no doubt that they have it. Whereas an antibody test could mean that they had it.

It could mean that their immune system thinks they had it. They may never have had it. You know, we published this article with Dr. Afrin and Dr. Mulderings titled Learn Caution with, I have to remember the whole title, but with antibody, okay, hold on, let's get the name.

Linda Bluestein, MD (01:08:09.415)

No.

Linda Bluestein, MD (01:08:28.423)

I will definitely link that in the show notes. So yeah.

Tania Dempsey (01:08:32.558)

I don't know why I'm blanking. So it's with anti...

Tania Dempsey (01:08:51.694)

Yeah, so it's learned cautions regarding antibody testing in mast cell activation syndrome. And the point was that we looked at it was really that mast cells are talking to other cells and driving antibody production in sometimes a very spurious or random manner. They could be even causing, mimicking antibodies. So when you see antibodies testing positive,

in a mast cell patient, it does become a little more difficult to interpret. And that's why molecular testing is the best. And there are really great tests now that can look at whether there's active infection. And that's what I use.

Linda Bluestein, MD (01:09:37.895)

Okay, and going off on that same testing thread here, somebody asked about what criteria used to diagnose MCAS, and we know that lab testing is of course fraught with difficulty. So if you could share that.

Tania Dempsey (01:09:54.318)

So, you know, there was a paper, you should link that paper to, that we published on the consensus two criteria for mast cell activation syndrome. And so that's, you know, what we base it on, right? So we want to, at least two mediators positive, there are various mediators. We don't use tryptase as a, you don't need to have, we do use tryptase, we test for tryptase, but it's rarely helpful in diagnosing mast cell activation syndrome.

Linda Bluestein, MD (01:10:19.045)

Mm -hmm.

Tania Dempsey (01:10:23.882)

But we do use these other mediators that we can test in the blood, we can test in the urine, we can use biopsy samples. Ideally, there's a clinical picture combined with two or more mediators that are positive.

Linda Bluestein, MD (01:10:39.175)

And yeah, I definitely will link that paper. And I was one of the co -authors on that as well. And that was, yeah, that was a really great project for sure. So did we miss any questions or do you have any final thoughts?

Tania Dempsey (01:10:43.374)

I know. Yeah.

Tania Dempsey (01:10:53.582)

No, I think we covered a lot of ground. This was great. I love talking about all these things. No, I think, look, I think this is, mast cell activation syndrome is obviously a very complex condition with lots of nuances, right? And so we've covered some things, but I just want people to know that there may be something that I didn't cover that is important, right? Just for the hour that we're talking, it may not have come up.

Linda Bluestein, MD (01:11:20.423)

Right.

Tania Dempsey (01:11:21.998)

And I think, you know, the thing that I like to emphasize is just that if people are not getting better, they don't really understand why they're still sick. You know, I just really encourage them to continue to search, to find people to work with them. I do think that the network of mastcell savvy or at least interested providers is increasing. And I think that's good news. Yes, maybe there's still not enough of us out there, but it's getting, you know, we are growing our network. And so,

So keep searching, keep working, and keep thinking about and looking for those triggers that are continuing to make you sick, because I really think that, I think there are people who are suffering unnecessarily with things that can be treated and can be helped. And so I just, you know, I want people to feel better. And so, you know, keep finding those answers.

Linda Bluestein, MD (01:12:16.935)

And definitely people should also check out your podcast because there's lots and lots of great information in there as well. And like you said, there's, I mean, we could talk about this for, you know, 12 hours instead of an hour. So, okay, great. So we'd like to finish every episode with hypermobility hacks. So, and it could be a mast cell related hack because we know that that is definitely related to hypermobility as well. So do you have...

Tania Dempsey (01:12:24.782)

Definitely.

Linda Bluestein, MD (01:12:45.543)

a favorite hypermobility or mast cell hack.

Tania Dempsey (01:12:50.862)

Wow. I love that question. Yeah, you know, I think, listen, my hack is definitely going to be from the mast cell lens. Look, I think there are lots of things that my hypermobile patients should do to improve their overall health, right? But I think really just thinking about the hack for me is just like,

Don't be afraid of antihistamines. I think there's just so much fear over, seriously fear over antihistamines, not just because of the dementia study, but in general, people don't want to take medications and they're afraid of reactions. And so I do see improvement in hypermobility with antihistamines. When people are controlled, regardless of what's helping them get controlled. Control of mast cell does help decrease the symptoms related to hypermobile.

mobility and EDS. You know, I have a patient I talked to the other day who has a lot of joint pain. She does have hypermobility, but she also has Lyme disease, and she also has MCAS. And as we're treating these various things, and in her case, ketotifen actually is making a big difference, and so her joint pain is better, and her nausea is better, and all these other symptoms are getting better. So the hack is, you know, like,

Get your mast cells under control and don't be afraid to trial some of these medications.

Linda Bluestein, MD (01:14:24.199)

I totally agree with that. I've had quite a few patients where we've worked on getting the mast cells under better control and that has actually helped improve their joint instability as well as their pain. It's helped their pain and their joint instability. And honestly, before the conference in New York that we had, I guess that was almost two years ago, that amazing conference that you and your partner, Dr. Larry Afrin put together, that was a phenomenal conference. But really before that, I mean, I was

Tania Dempsey (01:14:35.63)

Yeah. Yeah.

Tania Dempsey (01:14:43.854)

Yeah.

Tania Dempsey (01:14:49.55)

Yeah. Thank you.

Linda Bluestein, MD (01:14:53.573)

addressing mast cells, but not as much. I kind of, you know, in preparing that talk on pain care related to mast cells and how mast cells could be playing a role, I definitely started to, after that, be much more diligent about addressing mast cells and I really think that that's made a big difference in outcomes. So yeah. Okay, where can people find you online?

Tania Dempsey (01:15:16.142)

I believe that.

Tania Dempsey (01:15:21.934)

So I have a new website out, drtaniadempsey .com. I have my Facebook, Dr. Tanya Dempsey, Instagram, drtaniadempsey.com and then of course the podcast on Apple and Spotify. It's called Mast Cell Matters. And my center is AIM Center for Personalized Medicine, and we're in Purchase, New York.

Linda Bluestein, MD (01:15:47.911)

Fantastic. All right. Well, I am so grateful to you for coming on the show today. And I just want to remind everyone that they've been listening to Bendy Bodies with the Hypermobility MD. And your guest today was Dr. Tania Dempsey, leading expert in MCAS dysautonomia, ME/CFS, tick -borne infections, and autoimmunity. Dr. Dempsey, thank you so much for coming on the Bendy Bodies podcast, sharing your incredible knowledge and wisdom with us. And...

being so generous with your time.

Tania Dempsey (01:16:18.926)

Thank you for having me. This was great.

Linda Bluestein, MD (01:16:21.703)

Of course.