Is Mast Cell Activation Syndrome (MCAS) the root cause of chronic illness?

Tania Dempsey, MD, ABIHM

Thank you, it’s an honor to be here. I’m happy to spread the word and educate.

Christine Schaffner, N.D.

Yeah, absolutely, well, you live in this world, right? This is what you see every day. I’ve only been practicing about 11 years and I think during that time, we’ve always seen sensitive patients, but I feel like this increased sensitivity I don’t know if it’s just our awareness or a new phenomenon with all of the environmental stressors and the pathogens that our patients are dealing with, but physicians like yourself and your colleagues are putting the language around really what is going on biochemically and physically with these patients. And so we’ll just start with an overview and please share with us what really are mast cells and how can they tie into the sensitivity that we’ve seen in the office?

Tania Dempsey, MD, ABIHM

Yeah, and you know what, I’ll just address your earlier comment about are we seeing more or are we just more in tune to it? Because I agree that over time, over the 20 ish years of my career, I had these patients back when, now that I understand more about it, I would love to call those patients up and tell them, I think I know what you have. I didn’t know it back then. I mean, we sort of empirically treated and got people better, but like, now this sort of just opens it up. But I think that it’s a combination of factors, again, it’s awareness, but it really is that our environment is very, very toxic. And that’s I think the point of your summit, there’s no question about it. So I think I’ll start then just to understand our bodies are made to really interact with the environment, right? As human beings, we need to know, and animals are like this. I mean, any living being has to have some communication with the environment. And it’s a mechanism, right? 

So we have mast cells, if we get down to like the nitty gritty, they’re white blood cells and they’re part of the ancient immune system, so that there are other animals that have mast cells as well. And they are a part of what we call the innate immune system. So it’s primitive. It’s sort of like, it’s a fast kind of reaction. It’s a fast interaction with the environment. And mast cells are, even though they’re white blood cells, we have lots of white blood cells flowing through our circulation in our bloodstream, but mast cells live actually in our tissue. And they live in our organs and the skin, the GI tract, the lungs, the heart, right? So they’re everywhere where there’s tissue. And they’re there to protect us from the world around us. All infections, chemicals, pesticides, everything that could be potentially dangerous to us, the mast cells are there to protect us. And so when we think about, before we even talk about chronic disease, let’s just talk about in every single person, whether they’re sick or not, they have mast cells and they have mast cells that will react under certain circumstances. I like to use COVID-19 as an example, ’cause there are healthy people who have gotten sick with COVID and their mast cells will activate. It’s an infection, right? 

Whether they had a prior issue with mast cell activation syndrome or not, we’re gonna talk about what that means, it doesn’t matter. Mast cell see virus, they’re gonna go off and they’re going to try to combat it. And the mast cells have a couple of different ways that they try to protect us. One of the easiest things or one of the fastest things that they do is they degranulate. We say they basically, I like to use the term explode. So they release these chemicals that they make. These chemicals are known as mediators. There are lots of mediators that they make. We now have identified over a 1000 mediators that mast cells can make, not all mast cells are gonna make a 1000 mediators, but the point is there’s a lot of mediators that can do a lot of things. And so when the mast cell sees a virus, whatever, right, it’s going okay, and it’s exploding. 

And it could be histamine, could be one of the mediators, that’s a common one that a lot of people have heard of, but again there are others. And those mediators are inflammatory, they are in a sense trying to help, right? So they’re gonna maybe fight that virus. But really at the end of the day, what they’re doing is actually releasing these chemicals that are actually toxic to us. So if there’s too much of that going on, wherever those chemicals are being released, they’re causing inflammation. So if that reaction is happening at the level of the lungs, then you could cough, you can have shortness of breath. So it really depends on where the mast cells are reacting to that thing that trigger, okay? So that’s in normal circumstances. And what should happen is if you have normal mast cells that are reacting to something, they should be able, if they’re normal to reset. 

They just sort of like go back to normal, and then they’re waiting for the next event to happen, which may never happen or may. Now in mast cell activation syndrome, what we’re talking about is this is a condition where the mast cells themselves are inappropriate. They are, I’ll use the term mutated even, right? They do carry mutations that cause them to react more than normal. They don’t reset. So they may react to the virus, but they don’t go back to normal. They send the person into this sort of spiral of continued activity. And in mast cell activation syndrome most of the time, it’s something could be genetic, or something that is sort of presenting early in childhood, and over time it does tend to worsen and sort of escalate during a person’s life when they’re exposed to a lot of things in the environment that are potentially toxic. I mentioned infection, but mold is a fungus, right? 

That is an infection, but then that fungus let’s say produces mycotoxins. So it could be anything, right? But in mast cell activation syndrome, it’s really the mast cell themselves have probably been abnormal before the trigger, the trigger makes it worse, and then it sort of then sets them up for the next event. And they never, I can’t say never. that’s my job is to get them back to normal, but often they just continue to escalate. So mast cell activation syndrome, even to clarify even more, there are different ways to look at it. There’s something called primary mast cell activation syndrome, and there’s something called a secondary, and then there’s idiopathic. And so in primary mast cell activation syndrome, those are people who, that is actually the root of their condition, that’s starting from childhood. 

They’ve had triggers, they’ve had infections, they’ve had mold exposures, but the real root you have to eliminate triggers, but the real root is the mast cell. In secondary mast cell activation syndrome, I have a handful of patients like this. They are completely normal. They never had any immune dysfunction whatsoever. They have a major event. I have a patient, for instance, she’s well until the age of 40, right? Like lived a very productive life, and then got Lyme disease, and then is now in a state of mast cell activation syndrome secondary to infection. And in some of those cases, you treat the underlying trigger infection, you eliminate the toxin, whatever it is, and they do reset, and the mast cell activation syndrome sort of gets reversed. In some cases, it just continues unfortunately and becomes the problem. And idiopathic is sort of like probably a combination of all the above.

Christine Schaffner, N.D.

We have yet to figure that one out, right?

Tania Dempsey, MD, ABIHM

Right.

Christine Schaffner, N.D.

It’s probably all of the above, yeah. Now, thank you, that was an excellent overview. And one of the things too as you’re describing this, in some of what I’ve tried to understand clinically, do you feel like there’s a spectrum, like there’s kind of this, there the primary and secondary, and there’s the diagnosis of mast cell activation syndrome, but do you find in your practice that there’s like a spectrum, like maybe people are not that extreme, but they have more irritable, or excitable, or I mean, just mast cells that just don’t reset as well, but it’s not completely in that expression of a diagnosis, have you been seeing that as well?

Tania Dempsey, MD, ABIHM

Oh, for sure, yeah. There’s really a broad spectrum of disease. And I would argue that there are a lot of people walking around with mast cell activation syndrome who don’t know that they have it because they’re relatively healthy, because they might have had a few weird things pop up, but no one’s ever put it together for them, and then they just continue being okay, right? But then there’s another set of patients who have some issues, are coming to a doctor, they’re looking to get some information, they know something’s wrong, but they’re still highly functional, right? They’re still in a state where, yes, their immune system is more reactive, but their body’s compensating, right? 

There’s some way that they’re still controlling it. And then obviously at the end of the spectrum is very severe disease where it’s basically the body is almost shutting down because of this level of inflammation and reactivity. And I think what’s really even important to understand is in the spectrum, there are people who have more allergic like phenomena, and those are the patients that are a little easier to diagnose, right? Because it comes to mind, right? They have some seasonal allergies, they have some food allergies, they may not even have allergies. They’ve been to the allergist. They’ve been told they don’t have allergies, but they have that sort of allergic like phenomenon. They have some hives or they’re itchy, right? And those are the patients that are a little bit easier. They’re on our radar. But you don’t actually need to have any allergic like phenomenon at all and still have mast cell activation syndrome. And this is like a take home message. 

Like I wanna make sure that people listening understand that you don’t need to be that person. You could be someone who has inflammation as your primary issue, that you have joint issues, you have pain, you have neuropathy, again you could have dysautonomia, dysfunction in the autonomic nervous system, you could have dysfunction in the GI system with gastroparesis, you could have and not have one allergic symptom whatsoever. I can still have, and that is mast cell activation syndrome, right? Really until proven otherwise. And then you could have a combination of those. And then lastly, you could have, ’cause I think they’re really, the way to think about it, is there are like three themes of mast cell activation syndrome. So you have the allergic like, you have the inflammation, and then you have diastrophism which is sort of like abnormal growth and development. 

So those are the patients. They have lumps, bumps, nodules, cysts in various places and they can be very disruptive. They can be very mild. They can be more severe. And that could be their main issue or it could be combined with those other things. So if you start to think of it that way, you start to understand how many patients really are affected by this. And according to some research out of Germany, a number of years ago they published that 17% of the population, at least 17% of their population. And if we assume their population is similar to our population in the United States, we would say a 17% of people have mast cell activation syndrome. So now you understand like the reason that can be is because it could be such a wide variety of manifestations.

Christine Schaffner, N.D.

Yeah, that’s again an incredible number, when you think about it, what the general population. And I think as we put our attention to this, we have the opportunity to diagnose our patients. And of course that sets us up for the appropriate treatment and for them to get their lives back. But I guess wherever we could go now, I think people would probably like, well, maybe this is me, maybe I have this, like where did we start with tests and how can we really hone in if this is really the thing that needs to be treated to get us well?

Tania Dempsey, MD, ABIHM

Well, I think, look, I think you’d need to take a very comprehensive history. So if people need to make sure if they’re the ones, so that the patients that are listening, they need to find a practitioner who’s willing to listen to them. The history has to be from the beginning of their life. And I would argue even earlier than that, right?

Christine Schaffner, N.D.

Yeah.

Tania Dempsey, MD, ABIHM

So history of the mother, some people don’t know that history, they’re adopted, just sometimes the history is not available, but if it is available, to try to understand what the person was exposed to, all these triggers need to be evaluated first. Like before you even go to testing, you need that history. You need to understand, right? Because if there is mast cell activation syndrome and you find it, you’re not gonna get them better unless you have identified the potential triggers that are making them worse, right? So the history is imperative, right? So I take a very, very thorough, two, three hour history. And then you start to sort of unravel where you figure out what do you need to test for. And if you’ve determined that the story really kind of is consistent with potentially mast cell activation syndrome, then we send them on that path for testing. The testing is a little complex. And unfortunately we really are struggling to find labs that can do the testing correctly. 

Some of the things that we do, a lot of the testing relies on trying to find those mediators that the mast cells produced. Lot of those mediators are very sensitive to heat, temperature changes, they degrade very, very quickly so they are only around for a short period of time. So if you’re trying to collect it in blood or urine, it’s sometimes you can’t find it . And so sometimes it’s just fault. and sometimes it’s just because that’s just what happen. So the process of testing relies, you need to have a reliable lab. So what we’ve done is we’ve created our mast cell collection lab. We don’t do the actual testing of the specimens, but we have a lab that we work with, we process those specimens properly with a refrigerated centrifuge. Everything is kept cold and avoiding heat. So we prevent the breakdown. And so some of the testing is done in the blood. Some of the testing is done in urine. Sometimes it’s a 24 hour urine collection. And I would argue you probably need to do all these things to really understand because sometimes it’s hard to get the answer. 

But you have blood urine and really the third piece of data that you can use for the diagnosis is with a biopsy sample. So a lot of the patients that I see they have GI symptoms. So they’ve had an endoscopy or colonoscopy. They’ve had some kind of scoping, and often they’ve had biopsies done. And if we can get those biopsies and we can have them stained in a certain way to light up the mast cells, and that’s a type of stain that most pathologists won’t do. They’re looking for other things like most people are not thinking about mast cells, but we go back and we have them stained. And if you see more than a certain number of mast cells on a specimen that is supportive of the diagnosis. And I like to have two pieces of data, it could be a blood test, or a urine test, and/or the biopsy, but you’d like to see two mediators ideally, or two sources of, that there’s a mast cell activation process going on. And that combined with the clinical history allows you to make the diagnosis.

Christine Schaffner, N.D.

Now thank you and I know that because you do this day in and day out, you’ve perfected a lot of the process and it’s complex as you said and when we’re in this realm as we’re talking to patients and clinicians who treat mycotoxin illness and chronic illness, a lot of this is the reliance on clinical history and just therapeutic trials based on that data because I mean we’re doing this in 2021, right? We’re recording this and if we just use lab work alone, we would probably miss a lot of opportunities to treat our patients empirically. So it’s great. It sounds like we’re getting there, but still it’s complicated, right? But I was just saying, in the basic blood work, that people have more access to, do you see certain patterns or trends like some of us will look at like eosinophils, or total IgE, or like things, again, that won’t catch every bucket that you’ve shared, but do you see like some of that kind of like patterning and some of the basic work that makes you think that we should go down this direction?

Tania Dempsey, MD, ABIHM

Yeah, and you brought up two very important findings and very easily accessible by most practitioners draw that and any lab can do it, but definitely you see an elevated IgE, there’s a flavor of allergy. You see eosinophil, there’s a flavor of allergy. Of course with eosinophils you also have to make sure they don’t have parasites or something else, right? So it’s not specific, but it does kinda give you an impression. I would say that it’s not uncommon to see and again, you can’t just assume it’s mast cell activation syndrome, but sometimes we see polycythaemia. We’ll see an elevated hemoglobin. Those patients that you’re not sure they don’t have hemochromatosis. They don’t have a reason to have like elevated red cells, but they have those elevated red cell indices. So you think why is that maybe driven by mast cell activation. I’ll sometimes see elevated platelets. Again, not specific for mast cell activation syndrome. 

Sometimes we see white cells, just the total number low or high. So you start to see especially if you see a pattern, I would never use one blood test alone, but if I’ve gone there, but their blood count a bunch of times and I see that there’s like sort of this consistent pattern, and I’ve ruled out other bad things that it could be, right? The whole point about diagnosing mast cell activation syndrome is that you really wanna make sure that the symptoms and the signs and the clinical data and all there in the laboratory data support, that nothing else explains this condition. That mast cell activation syndrome can explain the entirety of the patient’s situation. But if you’re doing a workup and the white count is high and you find out they have an infection, right? You can’t just say that’s mast cell activation syndrome, right? 

So it’s a little bit, is again a lot of reliance on, you need to know this stuff, but I do think for people who don’t have access to what really complex testing, you can tell some things from blood. I see very often metabolic issues in mast cell activation syndrome. So they might have an elevated hemoglobin A1C, they’re not diabetic yet, but they might have some insulin resistance, very commonly seen, not a 100%, but it is not an uncommon thing. We see hormonal imbalances. So in general, I think women with polycystic ovarian syndrome are at higher risk for having mast cell activation syndrome. And I would say actually that it’s not mast cell activation syndrome that probably puts them at risk for polycystic ovarian syndrome, but they’re all these syndromes. And so those women have high testosterone, they may have acne, they may have increased hair, they may have weight issues or not, they may have fertility issues, women who have abnormal periods, heavy bleeding. So you’re doing this hormonal workup and you start seeing there’s something off, that can be again supportive of the diagnosis, but not diagnostic.

Christine Schaffner, N.D.

Yeah, that sounds, it’s an interesting connection I had put together. And when you’re talking, I’m like, huh, ’cause for women also who might be going through infertility or trying to get pregnant, sometimes Benadryl was prescribed, right? Around those situations to help with fertility. So it’s like, of course, but you hear things differently. So that’s interesting ’cause a lot of our chronic illness community, right? A lot of women they have PCOS, and they have endometriosis, and they have fibroids and these conditions. So sometimes we just think are related to estrogen dominance, or microbiome issues, or so forth, but this is another lens to look at that. That’s really interesting. So, I can pick your brain all day long. 

So I’m trying to– So, when I think of mast cell activation and this is where I’m learning from you today, again, the that you shared, and I’m a natural person, so I’m always like thinking of like the trigger, right? Like, okay, what’s causing this, right? So I’m thinking there’s often this pattern that I’ve seen at least with my patients that teach me that often patients with Lyme and co-infections especially Bartonella, they kinda could have this piece of the puzzle going on at the same time. Also we’ll talk about of course mycotoxins and how that can kick things up, and then parasitic infections too, because of just have the immune system shifted with parasitic infections, there can be more kind of histamine type reactions. 

When you treat parasites, sometimes people get these skin rashes and these types of things. So how do we make sense of this? So again, you’ve shared this so I don’t wanna reiterate, but should we be thinking of like these infections trigger the mast cells, you gotta figure out the infection piece and then reset the mast cells, or like, hey, we’re on the planet, we’re exposed to these things all the time. It’s the terrain that’s dysfunctional and the mast cells that are probably for that person could it be more triggered by these things that people are exposed to and that creates the illness. Does that make sense how I asked that?

Tania Dempsey, MD, ABIHM

Yeah, yes. Yeah, no, it makes a lot of sense. And actually as a conversation that I have with almost all my patients because we get this data, right? We’ve tested for mycotoxins and we find out that they are living in a moldy home. We’ve done some tick-borne testing ’cause they’ve had some exposures that we’re worried about, maybe they’ve had a cat and they’ve been bitten a bunch of times. Maybe they’ve had a tick bite or they’ve grown up in a endemic area. So we do some Lyme testing, tick-borne testing, right? And maybe they have a Bartonella positive test that makes me concerned. And then I’ve done some work looking at their gut ’cause I have a lot of gut issues. So I see dysbiosis and I see, out of normal, maybe the GERD or whatever, right? So I see all these things. And I also have this history that supports mast cell activation and I might have some data to support the diagnosis. 

And you look and I say to the patients all the time, like I can’t tell right at this moment what the real root cause is, right? But I suspect as we kinda go down this path, it’s gonna be very clear. And that’s the truth, over time the things clear up. But I would say that one of the things that has really changed in my practice the last few years is that in the past I would focus more on these issues, the mycotoxins, the infections, hoping that that would sort of reset the mast cell part of it. And then a lot of those patients they would have these Herxheimer reactions or detox reactions, they just wouldn’t tolerate things. And you’re spinning your wheels and thinking like how am I gonna get those patients back? And these are the patients that I now do the opposite for. And I would say that I do that for almost all my patients now. 

You have to go after the mast cells, you have to. You have to think about if they have high histamine levels in the blood, then you think about different antihistamines, whether they’re drugs, whether they’re naturally antihistamines, you might need mast cell stabilizers. You might need to run through a lot of things But the point is that any treatment will not be tolerated very well by a lot of these patients, at least the patients that I’ve seen, they’ve been so chronically ill, that if I try to like unravel all the stuff in their environment that they’ve been exposed to, I think they don’t respond, right? But when we start to calm down the mast cells, we start to calm down and reduce the mediators reduce some of the inflammation, and we’re sort of working on the other stuff, it becomes clear, okay? The mycotoxins is not good for them. It’s not good for anybody. And at some point they have to get out of that house. But it’s fascinating. 

I have patients that are still living in their moldy home, but I’m treating them for their mast cell activation syndrome. And they said to me, “I can’t move. “I can’t, I don’t have money to remediate. “There’s nothing I can do.” And I need to get them better, right? And I know that I’m not gonna be able to detox them. I’m not gonna be able to do, I’m gonna work on their mast cells, because if I can at least help stabilize them and they’re not so reactive to the environment, they’re gonna get better. And I have a patient today who emailed me. He can’t move out of his house. He can’t afford to do the remediation. His mycotoxin levels are off the chart. He has tremendous neuropathy. He has every chronic disease known to mankind: diabetes, high blood pressure, kidney failure, you name it. He has it severe depression and a lot of medications. And I’m thinking how am I going to get him better, right? So he tests positive for Bartonella. He is my typical–

Christine Schaffner, N.D.

Yeah.

Tania Dempsey, MD, ABIHM

Patient though and he’s miserable and he’s in pain, right? So we try these different things, right? And he was so resistant to doing antihistamines. There was no way, he said, “That’s not my problem.” And I said, it is your problem actually ’cause we’ve confirmed we have mast activation syndrome, let’s just try it. No, there’s no way an antihistamine is gonna help me. You’ve got to find another way, right? And we went through this for a few weeks and then finally I convinced him. I was like, just do me a favor, just get some Alegra, let’s just start, because again, I’m limited with what I could use for him. I’m limited by a lot of things. And so Alegra, right, over the counter. Can you just go get some and just do me a favor, just try one, then try two and then let me know, right? So I spoke to him two days ago, right? He emailed me today. And for the first time in months, his neuropathy pain was controlled. He tried Gabapentin, Lyrica, the neurologist, through all these things, the guy was screaming in pain. And Alegra, one pill a day for two days–

Christine Schaffner, N.D.

Wow, yeah.

Tania Dempsey, MD, ABIHM

We said, wow, the neuropathy pain is better. So my point is this, so I’m getting to the point where I feel like all those things are so important and I’m never gonna ignore it. And here’s a guy where I’m going to have to work on all these other issues that we found and all the environmental stuff, but wow, how powerful is that? That just bringing down his histamine level a little bit, gave the guy relive. So that now he sees, okay, this is potentially the problem. So am I making sense?

Christine Schaffner, N.D.

Oh yeah that’s perfect. That makes a lot of sense and what I went and write for this patient and for you, of course, to see that clinically and we think about, again, like I was and at thinking like, oh, support organs elimination and lymphatic as you’re sharing to us and I agree ’cause of what I see as well that potentially for some patients like really starting with the mast cell piece and the reactivity piece, we at a clinic with a team of doctors and we had a meeting this morning and we were actually, one of the cases that were presented is different, but similar, right? But like really reactive. And this doctor had this patient on a lot of things, but we were still like we still are missing some pieces of the mast cell piece to allow the patient to go through a treatment even, right? And to start really alleviate suffering. So you mentioned Alegra, right? And you mentioned already some categories, but I’m sure people who are listening are like, okay, well, how do you treat this? Like how do you even go about treatment? So just maybe some clinical insight to treatment.

Tania Dempsey, MD, ABIHM

Sure, I mean, I think, I like to set some foundational support for the patients. Most of these patients are vitamin D deficient. And mast cells have vitamin D receptors on that. So if there’s a deficiency that makes mast cell activation worse. So a simple tool I use is I treat their vitamin D deficiency and sometimes like, okay, that may not solve the problem for some, but wow, some patients just a little extra vitamin D helps. So there’s some simple things that I might do early on, or I might just go right into the antihistamine category. And in the antihistamine category, we have the antihistamines that are over the counter. We have Benadryl, which is a older form of antihistamine. And then we have sort of a newer generation: Claritin, Zyrtec, Xyzal, and Alegra. And then we have the generics of all those in different formulations and there’s liquid and gel and rapid dissolving. 

So there’s a lot of options over the counter. There are prescription antihistamines that sometimes we have to go to, sometimes we have to compound the antihistamines. And I would say we’ll compound anything. And I would say the biggest challenge in treating is that mast cells can react to medication, to vitamins, but more importantly they can react to the fillers that the medications or the vitamins are mixed with. So there could be, the capsule is often made of like methylcellulose, some people react to that. Sometimes there’s magnesium stearates, sometimes there’s crospovidone in some of the pharmaceutical stuff. Though there are ingredients that companies use to sort of fill things up or like to make a tablet stay together. Sometimes there have put dyes in it. So they have like colors. I don’t know why, that drives me crazy. 

That’s probably my biggest pet peeve is the dyes. Like why would you put dye in an allergy medicine? Sensitive. So sometimes it’s we have people try one formula and maybe they don’t do well or they don’t react well, we might have to try them on a different formula of the same drug. ‘Cause maybe we’re not sure if a drug is the problem or if it’s the stuff that the drug is with. That’s why sometimes compounding it and having a special pharmacy, make it without a lot of the other ingredients, sometimes that’s helpful. But the point is that there are a lot of like simple things that people can do. So those antihistamines that I mentioned are in the category of H1 blockers. So they block a histamine receptor in the body called H1. And you have a lot of H1 receptors in your skin and the respiratory tract. So that’s why when you take an antihistamine like for allergies or for mast activation syndrome, it goes and it blocks the histamine. So the histamine can cause a problem. 

That’s basically what it does, like blocking it from working ’cause histamine is the thing that’s really inflammatory. But we have natural antihistamines, vitamin C, quercetin. So there are a number of natural compounds that have some of that property. And then we have another class of drugs called H2 blockers. And H2 blockers are histamine blockers that they block these H2 receptors that are mostly in the GI tract. So they’re often marketed for people with heartburn or acid reflux, but sometimes we use it for people who don’t have those symptoms, but sometimes combining an H1 blocker, regular antihistamine with an H2 blocker like Pepcid, or Tagamet, or something like that, Zantac was one we used before it was taken off the market. There’s a prescription one available as well. So sometimes combining those two, just dampening as many of those histamine receptors as we can is the key. 

So working alone might not be enough, but together there’s like a synergy. So we see that a lot in the mast cell world is that it seems like sometimes it’s a combination, not one thing alone. So those are like the simple things that people can do. And then if those don’t work and I wanna make a point that if those don’t work, it doesn’t mean you don’t have mast cell activation syndrome because I see this quite a bit where people get really frustrated and doctors get frustrated, and they’ll say, well, we’ve tried all the antihistamines and it didn’t get be better. So that must not be the problem. Well, maybe histamine is not their problem. Maybe that’s not the mediator that we need to be targeting. Maybe they’re resistant to that, I don’t know, but I have patients where the antihistamine is not going to solve the problem, or the long acting, or newer ones don’t work, but Benadryl is the thing that works sometimes. 

And sometimes that doesn’t. So I think it’s about persistence. It’s a lot of trial and error and it sounds a lot like experimenting. And I kind of, I hate to use that word because we’re not experimenting on patients, but the point is that everyone’s mast cells are different. Every single person has different mast cells. Even within families you would think that there would be some genetic component, nope . So what one person reacts to, what one person’s mast cells react to positively or negatively does not apply to the next person. So I present this case and I say, wow, Alegra help this patient, right? But for every patient that Alegra helps, I have 10 other patients who can’t take Alegra like is the worst thing for them. 

So the point is that the only way to know is to give a trial. And I would say that realistically, I like to give two to four week trials. I would say that somethings will be apparent in a very quick time period. It could be a week, could be two weeks. But I usually tell patients, give it a couple of weeks if you’re not having side effects, if you’re having side effects, all right, move on. That’s not gonna be a good one for you, but you give it a couple of weeks, maybe a little longer, definitely by a month. If there’s no response, it’s not the right intervention. So then you move on and you try something else. And this trialing does take time, right? And so it does take a lot of patients, when patients are miserable and feel crummy, it seems like a long time, but then when we hit it, right? Then it’s great, but it can take time and antihistamines are not for everyone. So I might just wanna make that point.

Christine Schaffner, N.D.

Yeah–

Tania Dempsey, MD, ABIHM

There are a lot of other things, there mast cell stabilizers, cromolyn, ketotifen, we sometimes use low dose naltrexone. And again, there is like a slew of other things that are a little bit more, not like first-line, but can definitely can be helpful for some patients.

Christine Schaffner, N.D.

Thank you, I know that really gives us a picture, right? Of treatment options and then also, like with everybody, right? It’s that combination for that person at the right time. But the goal is I like how you give a time limit through trials ’cause the goal is for this person to feel better. So yeah, like if it’s not working come up with another combination with your provider. 

So once we kinda get the mast cell situation stabilized and people feel like, okay, they have more quality of life, they can have more resilience in their system. Do you find that like, okay, that’s a big part of treatment and we’ve settled there or do you feel more confident going like does this patient, like the Alegra patient, do we need to treat all those things that we just listed and then do eventually when that burden or that total load in their system is more like gets to a tolerable level, do the mast cells become happier and just reset, or is this kind of like this person just has mutated mast cells for life. I mean I’m an optimist, I don’t think anything’s for life, but with what we know now just curious about your experience, really what you see.

Tania Dempsey, MD, ABIHM

So yeah, I think that’s an excellent question, and that’s the question that patients ask all the time, are you gonna get better and then everything is gonna be fine. And again there are patients where taking the low down, reducing the burden, stabilizing their immune system and all that is gonna bring them to a point where they may still have more reactive mast cells at the base of things, I have patients who go years without needing any intervention for whatever reason. Maybe the mast cells are just, yeah, they’re stable. Maybe it’s a different population of mast cells and they just are not as reactive. Basically I heard the statistic that the bone marrow puts out new mast cells, something like every three or four years. So there can be like this like sort of life cycle of, so maybe the next batch of mast cells that are produced are gonna be better. 

So I’m an optimist like you and I always think, yes, there’s gotta be a way, but I also see patients who will always need some mast cell support for their life. And it might be that they always need to take an antihistamine, and that’s like, okay, it’s not a big deal, or they always have to take something, or maybe that may be the case because they know that in the long run, they’re just setting themselves up for a more sort of productive and a lower risk situation where they don’t have to worry so much about what’s gonna happen. So for example, right? I think about, I use COVID-19 quite a bit ’cause it really is such an interesting horrible virus, but interesting in the sense that it’s a virus, we know what activates mast cells. So in my mast cell population, what’s interesting is that I have patients who have actually done quite well with the infection. Surprisingly, some of these patients are so reactive and you think, oh, if they get sick, it’s gonna be horrible, or if they get the vaccine maybe that’s gonna be horrible for them. 

And they’ve done surprisingly well. And not all right, but a lot of them, and the question is why, and I look back in some of these patients, or just well controlled, their mast cells are well controlled. So that they are not as inflamed from the virus. I can’t predict that for everyone, but that’s sort of the message I like to give to my patients that it’s not a bad thing necessarily to need some support for a while because maybe that just is better for you, right? That allows you to live your life and not worry so much about, my patients were really chemically sensitive or they react, they go to a hotel and it’s a moldy hotel and all of a sudden all their symptoms are back, right? 

I have patients though that better I’ve controlled their mast cells and their immune system and reduced the burden. I’ve done all that stuff. They go to a hotel and be exposed to mold and not really declined again, right? That’s huge, right? So I think about the work that I’m doing as preventative also, it’s not just helping them now, it’s helping them be less reactive to their environment because the reality is our environment is so toxic and we’ve got to have a defense mechanism against it. This is just one way of looking at it.

Christine Schaffner, N.D.

Now I love that, I often say like, well, if we lived in utopia this would be different, but we’re in planet Earth in modern times, and there’s just a lot that we’re up against, right? And so again, I often say to, health is resilience, right? That’s our job, like we’re not gonna be able to control our environment and all the ways that we would like. And so how can we be more resilient to those exposures and bounce back and not be taken down and out of life. So I think this is a really, yeah, important message and important approach. And that really makes a lot of sense although, I didn’t know the life cycle of a mast cell. So would it be that long? It makes sense that we do need, this is like through treatment. Many of us see patients for a year or two, especially to get them stable before they’re in more of a maintenance mode. So that makes a lot of sense, Dr. Dempsey. So, I mean, you’ve touched on so many things. So I just wanted to circle back just because a lot of people who are listening to this seminar and focus on mycotoxin, is there anything that you wanna add when you have like you know that this patient does have a high mycotoxin burden? Like any other strategies that you’re thinking that we haven’t covered?

Tania Dempsey, MD, ABIHM

Well, I like to think about this mycotoxin issue on two levels. One is the environmental exposure. So the mold in the water damaged buildings or whatever they’re being exposed to from the outside, but I also see quite a bit of mycotoxin burden from the mold factory that they have inside, okay? I call them mold factories.

Christine Schaffner, N.D.

Yeah .

Tania Dempsey, MD, ABIHM

As they have so much, the gut dysbiosis, they have more and more gut bacteria. They might have high levels of yeast. They might have high levels of other types of fungus. They make mycotoxins too. And so then it’s like a double whammy. You have stuff inside, you have stuff outside, the mast cells are going nuts. And so the toxins themselves are gonna be triggers for mast cells, but I think what’s really interesting is I had a colleague use this sort of example because she’s an expert in mold and mycotoxins. And so the way she described it to me is really fascinating. The hyphae, if you think about, I like to picture like the candida yeast and they have these like legs, we call them hyphae not legs, but they like these long things, right?

Christine Schaffner, N.D.

Yeah.

Tania Dempsey, MD, ABIHM

And they can touch a mast cell. The imagery that, is just incredible when I think about how she said, it’s sort of like the hyphae touches the mast cell and it like pops like a balloon. It’s like, boom, boom , boom, boom. So then you start seeing like, you start thinking, right? You don’t only just have the toxins that are constantly making the mast cells reactive, you’re actually having like the physical force of yeast internally actually activating mast cells.

Christine Schaffner, N.D.

Wow,

Tania Dempsey, MD, ABIHM

So, again, it is a very comprehensive approach. So I’m looking at their mast cells and I know that I have to give them some support there if I’ve proven that that’s what they have. So I’m working on that. Listen, you have to remove them from the environment ultimately, right? But there’s so many factors that affect their ability to do that. So sometimes it’s not possible, but you hope that they could find a way to either remediate or move out or whatever. But if they can’t, you’ve got to work with what you’re dealing with. And if there’s internal yeast problem, we have to treat that. So sometimes it’s antifungal therapy, it could be with medication, sometimes it’s with herbs, it’s whatever we think they can handle, that their body can handle, their mast cells can handle. So sometimes we have to kind of reduce their mold factory to reduce some of the mycotoxin. Sometimes we use binders. I find binders a little bit hit or miss in the mast cell population. And you do have to be really careful with them. So it’s really a very gentle approach. 

I might be doing a little binder, I make sure that their mast cell support is on board. And we’re kind of like it’s like a dance. I see kind of what we do is like, it’s a little bit of step this way and then we step this way then we move back because we just don’t know, right? ‘Cause every patient is different. But at the end of the day, you’re not gonna get the patients better unless you’ve dealt with the triggers ultimately, right? I can say like this one patient, yeah, Alegra’s helping, but is it gonna solve all his problems? I doubt that. So we’re gonna have to start peeling that onion. I use that analogy a lot. I see these layers, and mycotoxins are in one layer for a lot of my patients. And you’ve got to strip that layer away and then kinda get what’s underneath it, but I would argue that in the majority of patients who have mycotoxin illness, there is a immune dysregulation that was there already, and then the mycotoxins exacerbated it. 

And we know that mycotoxins suppress the immune system and then they activate the other part of the immune system or with the mast cells, so it’s a mess. Like, I see this in COVID infections. I see this in my Lyme patients and Bartonella patients that many of them, not all in medicine, we never say all, we never say a 100%. I would say many patients have some susceptibility, genetic susceptibility or whatever. And then that mold exposure or mycotoxin exposure is the straw that breaks the camel’s back. And then everything goes back. So it has to be dealt with, it is a major thing, but it may not be the root cause of their problem. The root cause is the immune dysregulation problem, the beginning. Does that make sense?

Christine Schaffner, N.D.

Yeah, really well said and really, yeah, comprehensive and yeah, and graving, I think it goes back to that idea of resilience and our immune system and we’re just up against and exposed to a lot, right? And why is someone in the same building is fine and the other person not, there are all of these factors and that’s what we see a lot with mold illness, right? The partner is totally fine and can’t understand their partner being so sick. So we see that individualization and I’m kind of jaded ’cause I treat this all day long and like a lot of us have been exposed to Lyme and viruses, all of these things and I’m always asking why is this person sick and this person not? So I think this gives a really elegant explanation to that. So as I said, Dr. Dempsey, talk to you all night long here and I know we’ve covered a lot of ground–

Tania Dempsey, MD, ABIHM

Yeah.

Christine Schaffner, N.D.

And an excellent explanation of how mast cells and this immune dysregulation can be the root of anyone who’s suffering from a chronic illness. Is there anything that’s on your heart that we haven’t touched on before we wrap up?

Tania Dempsey, MD, ABIHM

Yeah, a good question. No, I think I like to just emphasize the fact that people are not feeling well. They’re listening to this and they’re not feeling well and they don’t have the answers. The answers are there, right? You might not have found the person who can find the answers for you, but I just like to encourage people to just keep looking and trying and trust their body because doctors can tell you that there’s nothing wrong, but you know there’s something wrong, right? So I say, forget what doctors tell you , you’re the patient, it’s your body. So keep figuring it out and if thinking about mast cell activation syndrome resonates with you, right? If it’s something that kind of makes sense with your history, read about it. 

There’s so many resources. We blog on it quite a bit on my website and Facebook and my partner here in the office, Dr. Lawrence Afrin has his book out, “Never Bet Against Occam” if you really wanna get dip into the mast cell world. We have my website, drtaniadempsey.com and my new website, which is aimcenterpm.com ’cause we just created a new institute, AIM Center for Personalized Medicine. So we’re just trying to get the information. So I encourage people just read, not just my stuff, there’s plenty of other stuff out there and just continue to find the solutions. I think we just, our patients don’t feel validated enough and it really breaks my heart. And I just want people to know that there’s a reason something’s wrong, you gotta find it.

Christine Schaffner, N.D.

Yeah, now, I love that message. And I’m in full agreement that there’s nothing’s random in the body, right? If something’s going on and just–

Tania Dempsey, MD, ABIHM

Yes.

Christine Schaffner, N.D.

Find those physicians who will work with you to uncover that. And it’s not just all in your head, right? So, no, I’m in full agreement and you’ve done a great job, sharing and educating our community. So we’ll definitely have your websites. What states can you see patients out of, so people might wanna work with your clinic? How do you work with people either in-person or via telemedicine? Could you just share a little bit about that?

Tania Dempsey, MD, ABIHM

Yeah, so, definitely the tri-state area. So I’m in New York, I see patients at Connecticut, New Jersey, Pennsylvania, sorta like, actually, I would say it’s not just the tri-state area, sort of like the northeast area, generally we’re good, Massachusetts. I do prefer if possible to see patients in-person if they’re in states that I’m not licensed in. So we’re working on that. I’m working on my California license, I’m working on my Florida license. So I hope that once I’m licensed, it will be easier to do telemedicine, but right now we do require patients be seen for at least the first visit so that I can examine them and see them in-person. Something to be said about the physical exam. It’s one of those things that we sort of think, oh, we’re never gonna find anything. A lot of doctors sort of don’t even take out their stethoscope, but you’d be surprised what I find on a physical exam. 

And so I feel like that piece of information, although some of this can be done with telehealth, that first visit where I’m feeling their thyroid, I found a thyroid nodule this week, like I find things that no one else has found before, ’cause no one’s actually like touched the patient. So the point being that we’re working on some more state licenses, so that I can do more telemedicine sort of initially and then the patient can eventually get here. But I really think it’s important that if COVID restrictions are better and people feel like it’s safer, I think coming in in-person is still better. And then we follow them. 

I have patients that are international patients, I do patients from wherever and we see them and we continue monitoring them. I think telemedicine has been, we’ve proven it during COVID times that it’s a great way to interact with patients and reach them when you might not be able to. But right now the point is we are a little bit limited because some of the states now, so like up until maybe this month, we had more freedom to do more telemedicine, but we’d been getting emails from various states telling us that because the COVID numbers are down, that they’re taking away the emergency services that they had in place that allowed outside doctors to treat patients in those states. But it’s getting a little tricky.

Christine Schaffner, N.D.

Yeah, I know, right? Always something to navigate, but now it sounds like you’re doing a really great job to cast your net so you can see as many people as you can. So that’s wonderful. Well, I can’t thank you enough for this interview and you shared so much excellent information today for all of those who are listening. And again the message of hope and uncovering the root cause of whatever the chronic illness may be. So thank you so much for being part of the summit.

Tania Dempsey, MD, ABIHM

Oh, it’s my pleasure, thank you for having me.