MCAS: The Hidden Reason Mold and Lyme Patients Do Not Get Better

If you're stuck in your healing process and you think mold is a part of it, you think a water damage, building your environment is a part of it, but yet you've removed yourself from the molding environment, you're not getting better. You've done your detox and you're not quite getting better. You're still sensitive to a lot of things. You're still sensitive to chemicals and smells. You're still sensitive to environmental things, foods, even supplements. You react with supplements or medications. Something to think about that may be going on that may not have been addressed quite yet is mast cell activation syndrome. So what I'll talk about today in regards to mold related illness or sirs is the whole idea of MC being a part of this whole thing and how it plays. First, I want to talk about a little bit about mcas. What it is Mast cell activation syndrome and how could it being undiagnosed, untreated keep you stuck and not healing when you're dealing with the water damage, building or biotoxins. Biotoxins probably is a better way to refer to it because that encompasses biotoxin related illness. I haven't really heard anybody call it that yet. So maybe I'll say biotoxin related illness, but that's really kind of sort of what it is. It's the idea of all these things in the environment that have many times have an organic or a living source. Again, petroleum used to be, you know, trees and things like that that died a long time ago and got turned into oral. So biotoxin. So how's that playing at mast cell? Mast cell activation is a great imitator. It can look like people with pots of dysautonomia, which is blood pressure regulation issues, lightheaded dizziness, people who the weather changes make them feel really bad or they have really crazy responses to smells. They might have a fatiguing episode or an anxiety episode after just a simple exposure to a smell or a chemical. People with Ehlers Danlos or hypermobility also are in the circle. It's actually thought that potentially Ehlers Danlos or certain types of it actually may be related to mast cell dys. And all of a sudden if you connect the tissue off, you'll have joint aches and pains, you'll be more prone to chronic Lyme, you have more issues with gut problems, more chronic headaches, a bunch of pain syndromes. There's also the realization that mast cells in relationship to butter damaged buildings can also give people a lot of gut symptoms. Gas bloating constipation, undigested food passing through your stool, waxing away from diarrhea to constipation. And then there's autoimmunity in general. Mast cell activation syndrome by itself is associated with certain autoimmune conditions. What I'm actually I just described to you is what's called the pentad super syndrome for five things. If you see one of them, you have to think about the other five GI issues, hypermobility, pots, mast cell and autoimmunity. And those five things, if you see them, you have to think about the other ones. But what can be a trigger for most if not all of those? Mold, water damage, building. So all of a sudden we're seeing this interconnection between this pentad, these five things and mold. So one of the things I want to talk about with mast cell in particular is once the mast cells get overactive. So mast cells are interesting because they leave your bone marrow and go around your body and they don't take their final expression, their final state of existence or activity called type, until they actually go to the final organ of destination. Mast cells tend to like, they tend to surround nerves, they tend to go around in hollow organs. So like your gut, your bladder, one version of mast cell activation syndrome actually has interstitial cystitis, which you feel like you have chronic UTIs, but you don't any illness with nerves, the vasculature, your arteries. So you can see how something like mast cell activation syndrome could look like a lot of different kind of things. And some of my patients who have rare damage building, mold related issues, biotoxin related issues, who aren't healing and aren't getting better, Mast cell activation is a part of their story. And if you don't calm the mast cell, and this is the thing that's tricky, that a lot of people don't realize, is that you might fix everything, but the mast cells stay overactive like they're phenotype. Again, why I said they leave the bone marrow in one state and they don't get their final state until they get to the final organ. So let's say you have issues with your nerves having weird nerve pains or dysautonomia pots kind of stuff. As the mast cells go to replace old ones and they go to those nerve sheaths or the artery, small vascular beds, endothelial walls, they will take on the expression of the dysfunctional mast cells. So when you start treating mast cell activation syndrome, you have to realize you have to be on five, six months you have to almost wash out the old dysfunctional cells and wait for new ones to come and take their place. That's if you've removed the trigger, if you remove the mold, if you've removed the Lyme or whatever the possible trigger for mast cell activation can be. One trigger, by the way, can be stress nervous system activation, which is where trauma can activate mast cells. I talked about that a little earlier, so I won't go into that right here. But what do you do about that? One thing you can do is start to calm down your mast cells as you're working through whatever you're dealing with. And that's where doing mast cell trials is helpful. Unfortunately, testing for mast cell activation syndrome is not the best. The intermediates, the histamine, prostate, the prostaglandin D2, all these different things, chromogranin, these things last for minutes, sometimes seconds. If you don't capture them in the right way and freeze or chill them immediately, if they sit out in the lab for 30 minutes or so, those things will actually dissipate. They'll break down. So you have to actually catch someone in a flare at the right time. You have to test for multiple markers, and you need to have two of them be elevated at least two times above normal to meet those criteria. Now, I know some people use, like, lighter criteria, et cetera, et cetera. The point is, it's kind of hard to get the lab test. You have to work with someone who's got the special tubes, all that kind of stuff. So the result is. And the real world, not the research world, the real world, we tend to do mast cell trials where we say, you sound like you have mast cell activation syndrome and you have poor sleep at night. Let's try hydroxyzine to help you sleep at night. Let's try Zyrtec. Let's try Allegra. Let's try some other antihistamines. Do they help you sleep a lot? You've got panic, anxiety, do things like hydroxyzine. Antihistamines have a massive impact on that. And one of the things I learned early in my career is benzodiazepines. Things like Klonpin Klein, though they have a high abuse risk, so never use them indiscriminately. They can actually be strong, powerful mast cell stabilizers in certain individual singular. There's a bunch of natural things. Dr. Theoharis Theoherides actually made a whole supplement line. He's one of the mast cell experts. Using low adjuvant, low adulterant, low activity Low phenol, basically making supplements that have removed all the things that really mess up your mast cells and using natural compounds like luteolin to actually help calm down mast cells on some individuals. These are super helpful. Different forms of quercetin. There are a whole bunch of natural things that actually can calm down the mast cells. But where you get in the weeds is you never ever know what's going to work for somebody. That Claritin, Zyrtec work great for them. I have some patients that Cromolyn, I had one patient with really bad dysautonomia pots and pain. Cromolyn made all that go away. You really have to do these trials and trials require the patient to be really knowledgeable, pay attention. We actually give our patients these mast cell sheets to help them, guide them through this, to give them some basic protocols and then help them record what they're doing as they're going through this. But you have to really mark these things as you go through them and not give up after two or three things because sometimes it takes multiple things. The other thing is people don't realize is sometimes with mast cell activation syndrome because in a way it is related, related to multiple chemical sensitivity which is. Or tilt syndrome is actually probably the more researched term. Toxic induced loss of tolerance. That's more accepted also in the medical legal world. So there are some experts who suggest we should use that term more because mass activation is not recognized in the medical legal world. But tilt syndrome is. But the idea is that part of this activation can be chemicals. Whether it's cleaning chemicals, whether it's binders and supplements, binders and pills. And so all of a sudden now removing those from every eating real food, not nothing processed, you know, petroleum based colored eyes, no, no artificial sweeteners. And when we choose your supplements, you have to use clean supplements. This is where it gets tricky. Some of the medications, some individuals react with fillers, the preservatives in the medications for mast cell activation. So it gets really complicated. But the point is that if you're having issues with mold related biotoxin, water damage, sirs, ASIA syndrome, whatnot, and you haven't looked into mast cell activation syndrome, you really should because that can be one of the things that really keeps you kind of stuck. Because if you have inflamed mast cells, it makes it harder for everything else to calm down. I've had multiple patients who've had reactivities, poor sleep pain syndromes that using different kinds histamines. It's really interesting. Some of the old, old school nerve pain medications like your tricyclic antidepressants, even your benzos that treat weird pain things actually are mast cell stabilizers and I have some antihistamine activity and so when I was younger in my career I didn't quite know how you know amitriptyline or nortriptyline or disappramine or hydroxyzine or some of these things would actually help with pain or psychosis or treat psychiatric issues and now I kind of know because of mast cell activation syndrome how the interplay is there. Now we've done a lot about this on our blogs, podcasts etc so if you want to take a deeper dive I encourage you to go there. But if you're stuck in a healing crisis you have some mold or water damage building or chronic inflammatory response syndrome stuff going on, you're not quite sure what your next steps are looking at. Mast cell activation syndrome could be a key to unlocking your body's ability to start self healing and self repairing. Take care, we'll talk to you soon.