Episode 21 - Mast Cells Causing Mayhem with Doctor of Naturopathy Beth O'Hara

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

00:00:29 Jill (Standing Up to POTS): Hello fellow POTS patients and nice people who care about POTS patients. I'm Jill Brook and today I'm excited to speak with our guest Beth O'Hara, a Doctor of Naturopathy about MCAS which stands for mast cell activation syndrome, one of the disorders that can commonly be present alongside POTS

(Transcriber’s note: MCAS is also sometimes referred to as MCAD – mast cell activation disorder.)

Beth O'Hara is a functional naturopath who specializes in complex, chronic immune conditions and she really knows MCAS because she has it herself. In fact, I believe she designed her practice to be the type of practice she wished existed when she was severely ill and not finding relief through conventional approaches. I'm sure some people out there can relate. Beth is the founder and owner of Mast Cell 360 where she works one-on-one with mass cell patients and also offers a website full of great information for MCAS patients.

So with both professional and personal experience, she is an expert at looking at all kinds of different factors contributing to mast cell activation syndrome and then using natural or lifestyle approaches to help.

In addition to her doctorate in naturopathy with a specialization in functional naturopathic approaches, she also holds a master's degree in marriage and family counseling and is certified in functional genomic analysis. Beth presents at functional medicine conferences on mast cell activation syndrome all over the country, and we're grateful to have her with us today. Thank you so much for speaking with us.

00:02:01 Dr. Beth O'Hara (Guest): Oh, thank you for having me on, Jill. I'm really excited about this because there's such a big link between what we're going to talk about and POTS. Not enough people are talking about it and I think this may really be a game changer for some people who are listening and I found that a lot of times this conversation turns some light bulbs on for people.

00:02:22 Jill (Standing Up to POTS): Yes, me too! And I know that we have been discussing pretty much only POTS in this podcast up until now, but for many patients, POTS is just a portion of their health picture and POTS can be just one part of a cluster of disorders that often go together and MCAS is one of those. So we're so thrilled to have you.

Now, it is notoriously hard to find doctors or experts of any kind who know anything about MCAS, who have heard about it, much less specialized in it. So do you mind sharing with our audience a bit about your own health journey and what led you to become a specialist in mast cell activation syndrome?

00:03:10 Dr. Beth O'Hara (Guest): Sure, I'd be happy to because I think, you know, when I share this it gives people hope and that's why I want to share it.

So when I was, young we moved - part of the story is that we moved out to the country. So, I had some health issues as a young child, you know, I had colic and some rashes and things like that, but we moved out to the country. And that is going to become important later when I start to talk about some of these root triggers. And it was after that move that I started getting more unusual symptoms.

And when you live in the country a lot of times you have big vegetable gardens and you snap green beans all summer long. Lots of green beans. And I would end up covered head to toe in hives. Or when I had to feed the chickens, I'd feed them corn - covered head to toe in hives and be scratching my skin until it bled.

But it wasn't just these allergy symptoms. I ended up having exercise induced asthma that was pretty significant, a lot of anxiety, blood sugar issues, and by the time I was twelve I was on more medications than both my parents put together, and mostly was being managed by allergists.

Things just kept progressing. So I initially wanted to go to medical school. And I was - I was so dedicated to this, Jill, when I was 16 I didn't care very much about a car. I wanted Grey's Anatomy. Like my whole plan and vision and dream was to go to medical school 'cause I was so fascinated by how the human body worked. And I think there was probably also this piece of wondering what was going on with my body that I didn't see happening to other people, to my friends, and I was getting this crushing fatigue and these things were just building. But somehow I pushed my way through college.

At this point I was starting to get a lot of low blood pressure. So that came on in my you know, really late teens, early 20s and I go to the doctor and they’d be like, “Gosh, your blood pressure is perfect.” And I would think, “Oh, good.” You know, it's like 110/70. That's OK, that seems good.

But then a few years later it went down to an average of 100 over usually like 66 (100/66). So we're getting in this range and other things were happening as well. By the time I was getting towards the end of my undergraduate, I was specializing in pre-med, I was so sick, Jill. I could hardly get out of bed. I had just no energy. The anxiety was off the charts. I was having trouble functioning and I had a few different scholarship offers to medical school. Full scholarship offers. And it's really hard to get. I worked so hard for that and I had to turn them all down.

It was devastating. I mean, I you know, I almost have tears just thinking about it because that was just - I had no backup plan. That was it. It was like that's what I'm going to do. And I wanted to go into neurology. I was really interested in how the nervous system worked, the brain worked.

So I ended up finishing in psychology and then figure out what I'm going to do with my life. And instead of becoming the physician that I wanted to become, I became a chronically ill patient making this circuit, and I know so many people can relate to that, to just - whatever your dreams are, watching it evaporate in front of you as your health just disintegrates.

And I had counted up by the time I was 35, I had seen over 50 different healthcare practitioners. By the time I was 40, I had spent over $350,000 recovering my health. And the one thing I have going for me is I'm tenacious and I'm going to keep going no matter what. But by the time I was 28, I couldn't hardly walk. I had to use a cane just to hobble to the bathroom and I would try to hold my bladder and not have to go because it was like walking on ground glass. It was just excruciating.

And then at this point my blood pressure was dropping down to an average of around 90/50 and nobody thought this was a problem. They just kept [inaudible] like, “Oh my gosh, whatever you're doing your blood pressure is amazing!” And then - and people would look at my blood work and go, “Well, you're as healthy as can be.” And I would think, “I can't hardly read a book anymore, my brain fog is so bad. Something is definitely wrong.”

But no one could piece together what was affecting this underneath. And I had a lot of people tell me I was crazy. They told me that I wanted to be sick and that was the most devastating. Like, I’d rather somebody just tell me, “I’m so sorry, I don’t know. This is more complex than I know to do with.” But for me to be working so hard and I did everything, you know, I did everything I was asked to do. I was researching on my own when my brain would work, and to be told that I wanted to be sick was just like inconceivable to me that that somebody could think that. So after hearing it, sometimes I served wonder am I? Am I crazy? Am I making this up?

But the big turning point – there were kind of two pieces of it. One was that I figured out histamine intolerance and I was following Yasmina Ykelenstam.

(Transcriber’s note: Yasmina Ykelenstam operates the website www.healinghistamine.com)

And she was reporting on histamine intolerance and she saved my life. And so there was that piece, and then I was seeing the best functional medicine physician in my area. This was before we had telehealth and you could get access to all these people around the world. Back then it was whoever you could travel to.

And so I have been working with him for three years and literally like a sprinkle of quercetin or sprinkle of curcumin - something that was supposed to help with the inflammation I had - and it was intense. The inflammation was high at this point. My C-reactive protein was now elevated. So things were starting to finally show up in the blood work. I couldn't tolerate them. They would make my insomnia so much worse and I already wasn't sleeping and so I had years of sleep deprivation. And then it took to have the tiny precious little sleep I could get be ripped away by a sprinkle of quercetin or curcumin seemed mind boggling. And nobody could figure that out.

I couldn't do anything and I couldn't tolerate medications, and if he finally said, “You know, Beth, you've tried everything I've asked you to try. Nothing is working. I don't know else to do.” And I thought if he doesn't know what else to do, what in the world am I going to do because this is the best person I have access to? And I cried the whole way home and it was exhausting just to get there and get back.

But right around that time, Yasmina had also started reporting on mass cell activation syndrome and she had been interviewing and talking with one of the top mast cell researchers in the world, Dr. Theoharides.

(Transcriber’s note: Dr. Theoharides is a Professor of Immunology at Tufts University School of Medicine. You can visit his website here: www.mastcellmaster.com)

And when I read the symptoms I went, “Oh my gosh. This fits this whole picture. This finally pulls it together, pulls together the brain issues, the low blood pressure and the POTS that was happening.” I mean, I would when I would go from lying down to standing up, I would feel like I was going to pass out. I'd start to black out and it explained the fatigue, just the crushing fatigue, the inflammation. I had horrible gut issues. I got down to 10 foods, if you didn't count herbs and salt. And I couldn't do pepper. So it explained that, it explained the sensitivities. Then I just had to figure out the why.

And once it realized I had mast cell activation syndrome I thought, “OK. Now I can do this.” And I had the pre-med background so I started pulling together anything I could get my hands on. Any moment my brain worked, I put my energy towards researching this, figuring out what was going on. And I started getting inroads, I started getting places where I could make some steps forward. And it took a good amount of time, but I got off that cane. I got my energy back. I got to where I went back to Graduate School and I got my masters and then I got my doctorate 'cause I knew I wanted to get back into the healthcare in some way and it was just the obvious specialty was to go into this mast cell area.

And so many people don't realize the link with POTS, but it it's huge. It’s quite significant. And part of that transition was people saw me recover so much I mean, I would go to something and realize I was so brainfogged had forgotten to brush my hair. And I was doing some life coaching - I mean I always kept doing something to be in service - and so I was doing some spiritual coaching, some life coaching with people, I remember one day I got into my office and I'd forgotten to put shoes on. I had my slippers on. [Laughs]

So my clients are compassionate, understanding, and I'd also become a medical yoga therapist through this. I often taught from a chair, but people started seeing the recovery. And they said, “Oh my gosh, what did you do?” And they started asking me, can you help me? Can you help me with the issues I'm having? And that transitioned me into health coaching and then that's when I went back and did more education and became a naturopath.

But now, I mean, I go hiking most weekends. I just got off the treadmill and just did 30 minutes on the treadmill. My energy is really good. I run this busy practice. My brain has to work to do this because I'm working with really complex cases and it's been such a recovery that I don't recognize my life from when I was ill. It's almost as if I'm talking about somebody else, because it was such a different life.

00:13:13 Jill (Standing Up to POTS): Wow! So you have me curious though, how does moving to the country tie into this? Well, when I moved to the country - this has to do with what causes these kinds of issues for us. So we probably should talk about mass cells and what they are so that I can tie it in with that, and why do these mass cells relate to POTS.

So mast cells are some of the most important frontline sensing and defending cells of our immune system. So their job in the immune system is to sense everything that's coming in from our environment. I mean literally everything. Every molecule of air, every drop of water, every bite of food as well as their sensing for danger. So stresses, they're sensing for injuries, they're sensing for pregnancy - they're involved in pregnancy. They have so many roles in our body.

And what is really fascinating about these cells is that they are lined with hundreds of types of receptors. So let's say a tiny molecule of pollen comes and it docks on that mass cell, that's going to unlock that mast cell to take an action or a toxin or so many people are exposed to forest fire smoke now. I mean, even where I am in the Midwest, we're getting this smoke here so I can only imagine how bad it is.

And so that smoke that the mast cells are detecting or starting to respond to, the way they respond is that they may have over 1000 possible mediators inside them. So, these are - the best known one is histamine. So people probably think about taking an antihistamine. So histamine is one of them. The other word a lot of people know now is cytokines and cytokines are a whole class of mast cell signaling molecules and there are dozens of these cytokines, not just one.

00:15:14 Jill (Standing Up to POTS): And they're terrifying because we associate them with COVID now.

00:15:17 Dr. Beth O'Hara (Guest): We do, but there are also anti-inflammatory cytokines so we have to keep that in mind. Like they're not bad, it's what is triggering them, what's turning them on and activating them.

So in a normal healthy body, some pollen comes in, triggers the mast cells, that triggers a sneeze response because they're constantly in contact with the nervous system as well, so it's important in POTS, and then you sneeze or you eat a toxic plant. We think, like, evolutionarily, we eat a toxic plant, mast cells are going to go into action, they're going to cause us to throw up, have diarrhea, and get that out. So they're going to orchestrate an immune response. Same if we get an infection when we're sick like a cold or flu, the runny nose, stuffy nose, sore throat. It's the immune response. So this inflammation is created to keep us safe, surround those, and then the mast cells, detect them, and then they call out the cavalry of the rest of the immune response to come in through these signaling molecules like cytokines.

So that's in a normal healthy body. Then we calm back down and everything is good again. What has happened, Jill, is that we've been exposed to more toxins than ever before in all of human history. We have chemicals that are created from combining of chemicals that we have no idea what they even do right now or the effects on our bodies. We're exposed to more forest fires. With climate change we have more rain in certain places, we have more flooding, more hurricane, more humidity. There's some other factors as well that are causing epidemic levels of mold toxicity, and we have all these electromagnetic fields now - Wi-Fi, things from our laptops, our phones, the ring devices, and, you know, security cameras - all these things that we put out that create Wi-Fi or other electrical fields. We’re surrounded by electronics. There's solid evidence showing that these are causing the mast cells to respond. They're responding and creating inflammation.

I like to think about our mast cells like the guards of the castle gate. So, again, keep protecting us, keeping us safe, they're on the lookout, they're seeing, you know, what's coming in from over the horizon, and then they should be able to protect us and settle down.

But if you're constantly bombarded, there's no settling down. Period. And what's happening is from this constant bombardment of all these different things, these mast cells are getting quite dysregulated. It's almost like if you had guards of the castle gate who had to be on duty 24/7 for weeks, months, years on end. You know how your brain gets like if we're sleep deprived, you know, we can't make a decision. Well the mast cells kind of lose their ability to detect what is safe, what's not safe, and they start making inflammation all the time.

And that's where it becomes a major problem because the mast cells are in almost every tissue in the body. Every tissue that has blood vessels, has mast cells. So if you think about where that is, and particularly a ton of mast cells anywhere that we meet the environment – so our skin, our sinuses, the whole GI tract and the mouth, down esophagus all the way through the intestines, you know, the stomach has mast cells. The lungs have high levels. The trachea and the blood vessels. Blood vessels and lymph vessels are completely lined with mast cells, because again, they're checking out did something make it past and now it's in the bloodstream?

So, when we're talking about things like cytokine storms, what's happening is this is getting out of control. The cytokine release - there's no mechanism anymore to settle it down.

00:19:17 Jill (Standing Up to POTS): So, what I'm hearing is that we have mast cells all over the body, that if a mast cell breaks open, it can release any combination of over 1000 different mediators or little inflammatory chemicals and so is this why we can have so many different symptoms as a result of mast cell activation syndrome, or how does that work? And what are the symptoms?

00:19:45 Dr. Beth O'Hara (Guest): That's exactly right. So, it is very different person to person, and I've worked with hundreds or hundreds of people. No 2 people ever look the same. And this is because, again, we've got these mast cells in every system in the body and then it depends on which ones are dysregulated.

So, in the more severe cases people are going to be more like me, where they've got everything is going wrong. Everything from asthma to GI issues. I had terrible acid reflux. I had constant loose stools, would never clear up. Liver issues, muscle and joint pain, brain fog, and POTS, you know, those major blood pressure drops because some of these mediators specifically lower blood pressure. There are a few that raise blood pressure, and if those are the ones getting triggered occasionally people will have high blood pressure. Much more common for you to see people with mast cell issues with very low blood pressure and POTS. They're quite related.

And I have people who just have like the GI symptoms, and they might have skin symptoms, so they might have alternating constipation and diarrhea. Or they might land on the constipation of the diarrhea side. Maybe they've got a little acid reflux or they might get a little throat tightening when they eat. And they're getting, you know, they've got eczema, or they've got psoriasis, or they've got itching or those kinds of things.

The skin and the allergy symptoms are what are considered classic. That's what allergists and immunologists usually recognize. But unfortunately, there's a lot of misinformation that you have to have those symptoms to have mast cell activation syndrome. It's not true. It's just a misinformation because this all still hasn’t even trickled into medical school yet. So it's not being taught. I have medical school students who tell me they're not being taught any of this.

And so then I have other clients who really have the nervous system side. They've got anxiety. They've got really significant insomnia. They've got brain fog and they're getting heart palpitations. And they get muscle twitching and things like that. So, they may be more on that side. And then you may have people that have lots of system involvement. But if you can think of it in the body, the mast cells can have a problem there.

00:22:12 Jill (Standing Up to POTS): Well, I'm glad that you mentioned skin and how electronics can affect you, 'cause people can't see it right now as they listen, but we're looking at each other through computer and in about 10 minutes my face is going to get big puffy and red, because that's what happens to me when I'm in front of the computer screen for a while.

And I'm wearing these Bose headsets and if I leave them on too long, I will get what I used to think was swimmer's ear. And I thought, “Huh. I'm getting swimmers ear once a week,” and it would always be right after I had worn these. And so that was a surprise to me. And I guess we'll talk about triggers later, but the number of different symptoms, the number of different triggers, the number of different body parts that can be affected is totally mind-blowing.

But I have to laugh because I think only people in the POTS community and maybe the Ehlers Danlos community, too, would believe it because they're actually accustomed to knowing about conditions that can affect your whole body and whether it's your autonomic nervous system that's making your whole body have weird symptoms, or in Ehlers Danlos syndrome, it can be your connective tissue doing it. In this case, it's the mast cells and I don't know how we got so unlucky that these things tend to occur together, but having not just one, but maybe multiple conditions that can have body-wide mysterious symptoms is such a interesting phenomenon, I guess is the way I'd put it positively. [Laughs]

00:23:40 Dr. Beth O'Hara (Guest): They're linked. So Ehlers Danos, the hyper mobility version and likely the genetic versions have some links as well, but definitely the hyper mobility version, also very linked. All the connective tissue has mast cells, and so you start to get these mediators, producing more inflammation. It weakens the connective tissue.

And I've had all three of these - mast activation syndrome, POTS, and Ehlers Danlos hypermobility and I had that hypermobility so extensively that I had to travel with my own chiropractic adjusting tool so that I could adjust my ribs back into place because they would come out on a daily basis just from moving. And you know my elbows significantly hyper extended. And so these things are absolutely linked, and we often see them go together.

And because the triggers for these things tend to be the same. So Bartonella is a coinfection of Lyme, and mycotoxins, mold toxins, will both eat away the connective tissue faster than the body can rebuild it. So they’re major contributors to Ehlers Danlos and to POTS, because our blood vessels are also connective tissue. So it starts to get spongy. So you think about trying to get - if you have a garden hose and you've got a garden hose that's really stiff, you're going to get really nice pressure through there. But if you use the type of material of a latex balloon, well, you're not going to get the same kind of flow because it'll just expand. And that's part of what's happening is that connective tissue gets weaker and looser and then you have these mediators from the mast cells that get very triggered by mold toxins, things like Lyme, that are now creating lower blood pressure by changing the vasodilation there. And histamine is a major vasodilator in the blood vessels.

So that was a connection for me with moving to the country was we moved to a farmhouse that had toxic mold. And back then toxic mold was not the issue it is today. You see toxic mold now in brand new houses, you see toxic mold in all kinds of places. But we're talking over 40 years ago and this was a farmhouse built in the 1800s. So it had a lot of toxic mold and I was playing outdoors all the time and we got bit by ticks constantly. And so, I had Lyme, I had Bartonella, I had Babesia.

I have reversed my EDS hyper mobility by almost 60% just by addressing the Bartonella and mold toxins. And my POTS - I'm not completely out of really low blood pressure. But some days I'm running around 106/70, that's huge for me to have my blood pressure in that range.

00:26:39 Jill (Standing Up to POTS): So back to the specifics of mast cell activation being interlinked with POTS, is it correct that part of what you're saying is that mast cells can make your blood vessels more dilated, more leaky, and so to a POTS patient who probably already has low blood volume, may have some issues with vasoconstriction, has some blood pooling, now with dilated leaky blood vessels it's even worse?

00:27:08 Dr. Beth O'Hara (Guest): Exactly. That's a component of it, and POTS is quite complex because there's another piece to this which is vagal nerve signaling. And vagal nerve signaling is involved in vasoconstriction or vasodilation. And our vagal nerve, for people who aren't real familiar with it, is the most complex nerve system. It's really a system, it's not a single nerve, 'cause there's so many branches of it. But it comes out at the very top of the neck between the top vertebrae and the base of the skull.

Well, guess what is at every nerve ending in the whole body? Mast cells, and they are in a constant communication 'cause our real sensing defending is a combination of mast cells, the vagal nerve, and the limbic system in the brain. And they all work in tandem. And so the mast cells have receptors for neurotransmitters on them and the nerve endings have receptors for many of the mast cell mediators. There's this constant communication feedback loop happening.

So, let's say you get triggered by something, could be mold toxins, could be that you're getting triggered by smoke and air pollution or stress, mast cells respond immediately to stress. And I've done experiments where I've ruminated and spiraled my thoughts and on something stressful. And one of my first symptoms is my hands swell and I can watch them swell - my knuckles will swell.

And then I can shift myself from having done a lot of nervous system practices to more of what we call that parasympathetic. So fight or flight, the sympathetic or the rest, heal, restore state. So I can use my breath, my thoughts, even changing the tone of my voice I'm doing right now, I'm shifting myself into this parasympathetic state. I'm actually visibly watching swelling coming out of my fingers, and it's literally that quickly because of this communication.

But also is happening in our blood vessels so that we've got nerve endings that communicate to the blood vessels, so a lot of people who have these mast cell issues, they have POTS, they have EDS, they have vagal nerve dysregulation for one reason or another. It can be - mold toxins cause massive signaling issues in the nervous system, early childhood traumas affect how the nervous system and the immune system develop, or ongoing stressors like, I have a woman who has significant mast cell issues, she has POTS. And you know, we checked her home. There was no mold in her home. She's still been stuck. She'd had all these sensitivities. She's dealing with some pretty serious osteoporosis, and there's a link with mast cells and mold and osteoporosis.

And finally, drilling into her lifestyle, she has a boss who has a personality disorder, is abusive. And they can't get out of that situation because anything like that tells our bodies we’re in constant danger and then our mast cells are gonna be responding. The vagal nerve is going to be sending these danger signals and then whatever kind of symptom constellation we get. So it's interesting people watch, like, when they're exposed to forest fire smoke, do they start having more POTS and mast cell type symptoms? Or if people are traveling to a coastal area, like I just went to Florida, and there's mold everywhere that's coastal - San Francisco all through Texas region, the whole Gulf Coast, all along the east and west coast. We get a lot of people in those regions with a lot of mold. And I'll start to flare when I'm around all of that.

But this this nervous system piece is often also overlooked in POTS. And the mast cells are that interface between the nervous system and the rest of what's happening in the body. So if we want to calm these down, we need to also be working on this nervous system side and shifting that vagal nerve.

Structural issues also - head injuries, neck injuries, just having a vertebrae out at the top of the neck, which is really common, will put pressure on it, and then people tend to get constipation or loose stools. They get anxiety, sleep issues with it as well.

00:31:31 Jill (Standing Up to POTS): That's interesting, and then I know I have a couple of really weird seeming triggers like vibration and I'm wondering how does a mast cell get a signal from vibration. And I’m wondering, how does a mast cell get a signal from vibration? Presumably there's not a receptor for that, so they respond to mechanical things, too, is that right?

00:31:52 Dr. Beth O'Hara (Guest): Yes, exactly. So if we think about, well, how do we sense vibration? We sense it with our nervous system and then the nervous systems communicating to the mast cells. When mast cells were developing and human body was developing evolutionarily, we didn’t have things that cause a lot of vibrations. So vibration was either an earthquake or you were picked up by an animal being shaken. So, you know, a vibration, historically, was not always a good thing. So, we have these really old signaling pathways for survival they can be part of it.

Temperature changes - some people are really triggered by heat, some people really triggered by cold. These things can trigger people. High histamine foods can trigger people because histamine will trigger the mast cells putting more into the body. And there's a category called lectins that trigger some people with mast cell issues, that's another type of protein in those, like nightshades. That’s why nightshades like tomatoes, eggplants, potatoes, have been known to cause arthritis issues and inflammation.

00:32:48 Jill (Standing Up to POTS): And it's really individualized, right? So hopefully the average mast cell patient would not react to all of these things. They would have their specific triggers that get them that are different from other people?

00:33:01 Dr. Beth O'Hara (Guest): Yeah, depends on the significance of the case.

So I tend to see people who are more on the more serious end. So by the time people get to see me, they've usually tried a lot of people, they've tried a lot of things, and nothing has worked. So I preface this by saying I'm already going to be a little biased towards what are the more severe presentations because that's what I get, that's what I see.

Some people have milder cases and they may find that, “Oh well, I just I can't handle eating at that one restaurant or these foods get me but these other fruits don't. As long as I don't get too hot, then I'm generally OK.” Those people don't come see me. They've got it managed, they’re alright.

I get the people who keep going downhill and they're getting more and more triggers. They're getting worse every year or they tend to have these unusual flares, and they can't figure out why. So we've got people all along these spectrums.

00:33:59 Jill (Standing Up to POTS): So maybe we can just spend a quick moment - I'm sure there's a lot of people listening right now who are saying, “Oh boy. I resemble some of those remarks.” So in terms of getting a diagnosis, I know it's not simple, but do you have any advice for what they should do, who they should see?

00:34:20 Dr. Beth O'Hara (Guest): Yeah, we can talk about it. Diagnosis - I don't diagnose, I do consulting. But diagnosis is very challenging in mast cell activation syndrome. Part of this is that it was only given a diagnostic code in 2016. So if you think about how long things like type 2 diabetes have been seen as official conditions or, you know, COPD, or these kinds of things, this is very, very new in the arena of traditional medicine.

But it's something that has been explored for decades. I mean, really since the early 1980s was when this was, as far as I'm aware, first hypothesized as being an issue. And it's been around for as long as we've had human beings, it's just now it's become extremely common, and the estimates that epidemiological population studies are showing that it's affecting between 9 to 17% of the general population. So that's huge. That's at least one in 10 people. If you think about everybody you know, if not around one in eight and a half people. And when people have chronic illness because of how these mast cells are in every system in the body, if they've got more than two systems involved, the estimates are that we're looking at well over 50% of people with multisystem chronic illness have mast cell activation syndrome.

But we're not talking about it, we're not addressing it, and there's a huge amount of education that needs to happen, and that's part of why I kept falling through the cracks and being told it was crazy. Nobody knew how to make sense of what was going on with me and we've got to change that. And we are. I mean that there's been huge inroads with a lot of researchers and a lot of practitioners, so we are making inroads.

But the current criteria - I'll explain the current criteria is and I'll talk about what are some of the problems with that criteria.

So the first one is easy: are there symptoms in two or more systems? So systems would be the lungs and the GI tract, or the brain, the nervous system and the skin. Any combination of two systems. You could have muscular, you could have the skeletal systems. You can have - a lot of people get a lot of urinary and genital symptoms, inflammation, their pain, burning, interstitial cystitis. So any of those count. Anything that is different systems.

Then this is where it gets trickier, and the current criteria is that there has to be an elevation in one of the mast cell mediators. The one most commonly being tested is tryptase, which is not elevated in mast cell activation syndrome. It's used to rule out mastocytosis, which is a rare genetic mast cell condition where there are too many mast cells in the body, which is a different issue. But I see a lot of people come in and they've been tested for tryptase. It's negative and they're told they can't have mast cell activation syndrome, and that's not correct.

So there is about ten others that get tested. The processing on the laboratory side is very precise. They have to be cold centrifuged. A lot of labs don't have that. And then you can do urinary N-methylhistamine. And this has to be a 24-hour collection, must be kept chilled. The lab has to keep it chilled until they process it and they have to process it pretty quickly.

These mediators will be up and down in the bloodstream within minutes. And so I have known of practitioners who had to get a positive marker for insurance coverage for their patients, have their patients in their lab and they had the equipment to run it in house, and they had them sit there, every hour on the hour, they drew their blood for 8 hours. And they would have them provoke a flare by doing all kinds of things they knew were going to make them sick just so they could get that diagnostic code.

That's a problem. But again, we're in our infancy. It's being worked on.

The other problem is there’s, like I said, only about 10 that are being routinely tested and we know that they're up to 1000 mediators. So how are we going to make sure that we're testing the ones that this person is having a problem with? So that that needs some work.

And from my best estimates, and I talked to my colleagues in this field, we're seeing that it's capturing about 10% of people with mast cell activation syndrome, the testing is.

The third part of the criteria of the official criteria is that people have to have a positive response to a mast cell mediator medication or an antihistamine. The downside to that, every medication except cromolyn sodium that's used in mast cell activation syndrome, as it's formulated not compounded, but as its formulated, has a mast cell trigger in it. So, things like titanium dioxide, things like dyes, talc, cornstarch, and people may not have a positive response because they're reacting to one of those things. So this is the challenge of it. And what I encourage people to do - we've got a symptom survey on our website people can access for free over at mastcell360.com and go through those symptoms, 'cause I base that on the research literature on the symptoms. And the more symptoms people have, and particularly if they've got - it has you give yourself points - when people have got 50 or more points, that's a quite strong. And if they're getting up in that range, you know we're even over 30, it might be worthwhile considering it because it's just it's related to every kind of autoimmunity that's been studied with it, because it's again this interface to the other immune cells. Lots of conditions, irritable bowel syndrome's, neurodegenerative conditions, MS, Parkinson's Alzheimer's, a lot of these things have been implicated with it. It's just, it's just such a common issue.

00:40:32 Jill (Standing Up to POTS): As you talk about the diagnosis problem, I want to beat my head against the table for all the poor patients who cannot get answers. But one reason I was excited to talk to you specifically about mast cell activation syndrome is that you and your website have so many wonderful lifestyle things that someone can do.

So even if the testing failed you, even if you are on a 2 year wait list to see a specialist, I feel like you offer things that people can do safely even if they don't have that rock solid diagnosis in hand. Do you have any, like, first go-to thing that when someone comes to you, do you have them look at their diet first or their house first for potential mold? Or do you - do you have any sort of thing that's like your number one?

00:41:27 Dr. Beth O'Hara (Guest): Number one, everyone who comes through the door I recommend that they do nervous system work. And we do a lot of community outreach because there's so many people I know who don't have the resources to do one-on-one appointments and things like that.

So we put things out there that are free resources or low-cost resources so people can start to step themselves through. And no matter what else they're doing, the research on nervous system rebooting is solid, and that's what I did my masters research in is an area called Psychoneuroendocrinology, which is a huge word that just means how our stress and mind states affect our nervous system, how these affect our hormones, affect our immune system, 'cause it's all interlinked in our bodies. And so this is one of the first entry points.

I used to think we could get everything handled by just supplements and we get clean food, we get the foods right, and we, you know, we get filtered water. And I just wasn't getting the results that I thought, for myself, but also, in our clinic. And then when we had people start doing the nervous system work it accelerated what they were doing significantly because it dialed all this down. The nervous system was sending a signal to the rest of the body, “We're safe now, so you don't have to do all this explosive symptom creation.” And it communicates that healing response to the body.

So it's not everything. It doesn't get everybody all the way to the finish line. But it's a huge chunk, and for a lot of people it's 50% of the healing process. I just can't emphasize it enough if that's the only thing people do.

And then the next step is I recommend people do a trial of lowering their histamine foods. And if there's any autoimmunity or heart issues, lowering lectins as well for six weeks. And we've got a very well researched - there's a lot of foods lists online that are not good at all. I wish I could say they were, but 95% of them have major errors in them and allow things that are very high histamine. And then it makes people confused and crazy or they think that diet didn't work.

So we combed the research literature and the information to put this together and curate it. So I'd recommend that list or Doctor Janice Joneja, healinghistamine.com - these are some very reputable resources.

(Transcriber’s note: Dr. Joneja, Ph.D., is an expert on immunology and has written several books about histamine intolerance.)

So make sure whoever you're following on the histamine absolutely has that dialed in, knows what they're doing there.

So we do about a six week trial and see if it makes any difference. If it does, then people continue. If it doesn't seem to make a difference then they slowly reintroduce higher histamine foods, see if it flares them. If it flares them, they go back. If it doesn't flare them then histamine may not be an issue for them in terms of foods, and so that's an experiment.

Also mast cell supporting supplements. I do this for everybody, including people that have POTS, calm those mast cells down. So we gotta calm that vagal nerve branch piece down. We gotta calm that mast cell piece down. People start calming those mast cells, then we look for mold and do mold detox, because I've found that in 99% of people who have come through the practice at this point.

And not everybody has mold, so I want to clarify that. There are plenty of people who do not have mold toxicity, but it's extremely extremely common in people with chronic illness.

00:44:58 Jill (Standing Up to POTS): Yeah, wow and I think that becomes its own entire whole world, right? If if you learn that's your issue, how to get that out of your house and what to do?

00:45:09 Dr. Beth O'Hara (Guest): People have mast cell issues, people have POTS, people have IBS, 'cause a lot of them aren't detoxing well, and I wasn't detoxing well. Everything glutathione I thought was going to come out of my skin when I tried that. And we don't want to use that for sensitive people for a detox protocol. It's too too strong. We put these resources together so people aren't lost 'cause there's not much out there in these areas.

00:45:32 Jill (Standing Up to POTS): Yeah, and there is so much research to be done once you learn you have mast cell issues and then you start trying to avoid things that might set you off. Actually, the way that I found you was that I felt like I spent two days researching toothpaste and I was going nuts. And then finally found one and then like the next day I found you and you had the exact same one. I was like, “Oh I should have just found that Mast Cell 360.” [Laughs]

And the same thing happened with like mattresses, and I saw that you had done so much time-consuming research and I wish I had found you sooner because it would have saved me so much time. But I really appreciate that you have shared all that and done all that and it's and it's all free, I believe, right, at mycell360.com?

00:46:23 Dr. Beth O'Hara (Guest): Yeah, all our blog resources are free. Our courses do have a cost because it's so much for us to get that out there. So we try to keep them low costs and affordable, and then we also do a lot on Facebook at Mast Cell 360.

We do free Facebook lives most Mondays at 2:00 Eastern Time and we always have a topic that we go through and we do questions and that gives people another community resource so they can ask questions there too.

00:46:52 Jill (Standing Up to POTS): Fantastic. Is there anything else people ought to have in their brains about mast cell activation syndrome that we haven't talked about yet?

00:47:04 Dr. Beth O'Hara (Guest): I think the biggest thing is that - #1 - don't expect your traditional medicine doctor to know a lot about it. Don't expect your functional medicine doctor to know a lot about it. And don't expect a lot of holistic practitioners because there's still a lot of education to be done.

Don't let people tell you that you're crazy, if they – because that’s about them, and this was my lesson learned, if somebody is getting uncomfortable with the complexity.

And the other thing is that we have to really advocate for ourselves when we have these kinds of conditions. When I start out making this circuit and I exhausted traditional medicine and holistic and functional medicine, and I thought that if I just found the right practitioner and just did exactly what they told me to do, I was going to be OK.

And that didn't work out and what I learned was that I have to take their advice and consideration, I have to look at what areas are their expertise, and that everything is an experiment. So to try things, see how it goes, make sure I'm documenting how it's going, but also continue to do my own research. And that was a big part of getting well.

The other big part, and one thing that I see again and again, the people that get well in our clinic are people who have resilience and they're dedicated to their healing. And so I always knew that there was an answer out there. I didn't know what it was going to be. I didn't know where I was going to find it. But I knew if I could put the pieces together and I knew somewhere, somebody had another piece for me. And it was never anybody had the whole picture, it was that I got a little bit here, I got a little bit there. And then I got enough to really start to accelerate it. But I took ownership for my health and my healing. And that's a big difference I see for people who really keep going.

So I guess my last message is that never ever give up when you're sick. And I had tantrum days and I had days that I just wanted to throw in the towel and say, “Forget it. I'm gonna just find something I can tolerate to numb my mind and watch TV for the rest of my life.” But that's not really a life.

And always keep going no matter what happens, just to put 1 foot in front of the other 'cause it can feel overwhelming, so just put 1 foot in front of the other. Figure out just what's the next step, because once you do that step, the next step will be revealed. Once you do that step, the next step will be revealed, and if you keep going, even though it seems like a 2000-mile journey, you will get there. It may take a while but it’s not a magic pill or an overnight recovery. This is a long term. Sometimes it can take people a year and a half or a year on the short end. Had a few people, six months, and sometimes it might take more average, maybe two or three years.

And then if you gotta piece it all together by yourself and you don't have support, then it's going to take a long time. But we've got a lot of resources.

So I want people to think about the bigger picture with POTS, and that there's more than just the blood vessels going on, that what's triggering it underneath.

00:50:21 Jill (Standing Up to POTS): That's great. I cannot thank you enough for taking this time with us today and for taking all of your suffering and making it mean something for the rest of us.

I'm sitting here thinking, “Oh man, I wish I had met you 30 years ago.” But thanks for what you do and for all the information that you put online.

And hey listeners, as always remember, this is not meant as medical advice. Consult your medical team about what's right for you, 'cause we're all so different.

But thank you for listening. Remember that you're not alone. And please join us again soon.

00:50:58 Announcer: You can find us wherever you get your podcasts or on our website, www.standinguptopots.org/podcast and I would add, if you have any ideas or topics you'd like to suggest, send them in.

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(Transcriber’s note: If you would like a copy of this transcript or the transcript for any other episode of the POTScast, please send an email to volunteer@standinguptopots.org)