Transcription
[Music] Anyone who's athletic or has done sports or has pushed themselves in performance, you get used to relying on things, taking things for granted. You know, that your legs will hold you up, that you can sprint to the corner, that you can do a back bend without blinking. And suddenly I felt trapped in my own body. Um, I'd had days where I couldn't walk in it. It scared the hell out of me because I'm so used to being active and not having to think about it.
I spent 17 years seeing 19 doctors, and the tests would always come back normal, or there would be some false diagnosis that didn't pan out. And that is way too long to go blaming yourself for having your life fall apart. I would say the worst days would be the rashes at the worst. I would be so miserable. Um, I would take so many oatmeal baths and just anything I could to try to get some relief from these rashes that would last sometimes weeks at a time for inexplicable reasons. And the the the phlegm would happen multiple times a day. Um, I also have sometimes I have trouble swallowing. Um, if I eat something, meat, pasta, something dense, I would sometimes have trouble swallowing to where I would have to bring it back up to swallow it again, or I'd feel like I was going to choke.
I always knew that this wasn't in my head, that it was something I was experiencing. And I had a family that was never like, you know, "Leah, maybe, maybe there isn't actually anything wrong." They were fighting right alongside me. And every time that we came to a roadblock, it was just like, "Okay, what are we going to do? What are we going to do?" So, it wasn't just me. So, it um made it easier because I, I had a team. And when I got sick and I was still in the squadron, you know, you could see people, the other pilots looking at what had happened to me. And you know, that's like the worst fear, you know, for a pilot, like something like that. And then, then you can't fly and you're done. And and to see that reflected back at you. Yeah. It's that's nightmares.
For me, my low point was when I couldn't be upright, but I was also having pretty severe reactions to mechanical pressure. So, just having my weight on anyone's surface would get so painful. [Music] So, I felt like I couldn't stand, I couldn't lay in one position, I couldn't drive, shower, eat, poop, almost anything. And yet I had no explanation other than I was inventing this all in my head.
It's amazing how much this illness has basically touched every system of my body. So, I mean, in terms of gastrointestinal issues, I had severe constipation, bloating, nausea, pain. Um, in terms of my neurological issues, really bad headaches, I referred to it as like "brain burning" along with the brain fog and the difficulty concentrating, sensitivity to light, sensitivity to sound. The thing about these conditions is the sheer number and variety of symptoms that they can involve. It can involve painful symptoms, embarrassing symptoms, um debilitating symptoms, invisible symptoms, symptoms so unusual and weird you don't even know how to describe them to people.
I always was a fit person. It wasn't um I felt disoriented in my own system. And I thought, I don't want to, I don't want to live if this is my future, if I'm going to not be able to move anymore. And as a dancer and someone who has used their their body physically to express art and emotion, I couldn't do that anymore. And it, uh, the the thought of not being able to to do the things I love. Um, it really, it scared me. It was, I felt very, very hopeless. And I thought, this is, if I can't recover from this, if there's no light at the end of the tunnel, I don't know how I'm going to survive this.
This disease takes complexity of disease, in my opinion, to a whole new level that my profession has never had to deal with before. Roughly between four and 17% of the population in the northern hemisphere has MCAS. MCAS is an allergic and an inflammatory condition that affects people at a young age, often infancy or early childhood, then gets worse as a teen, and then intensifies and worsens as an adult. Ehlers-Danlos syndrome is more than just uh double-jointedness. Uh, it is a situation where the attachments elongate and lead towards gastrointestinal and vascular compression syndromes. POTS is a condition where patients will faint or get lightheaded with standing, and to counter that, they have to hydrate with water and salt. Garments that are compression garments leading towards uh fluid getting into their circulation, and they also have to elevate their legs. The treatment, uh, can require medications, and the condition can affect the whole body.
What is really fascinating to me about these conditions is that there's so much low-hanging fruit. There is a lot that people can do even if they don't have a doctor to help them. For example, if they pay attention to fragrances that they are being exposed to in their environment and try to minimize exposure to that. If they try to drink out of glass and stainless steel rather than drinking out of plastic, they're minimizing their exposure to plastics. That way, if we think about pets that we might have in our environment that are potentially impacting us and at least keeping them out of our bedroom, if nothing else. There are also things that we can do with our nutrition that can make a really, really big difference. And even just in the beginning, trying to pay attention to how different foods impact how we feel can be really, really helpful.
The stealth syndromes can occur one, two, or three at the same time. Stealth syndromes can cause symptoms to be mild, moderate, or severe. And in that situation, the patient curiously can look perfectly normal. The symptom onset of MCAS typically uh takes place by no later than adolescence, quite often childhood or infancy. And it can be quite the menagerie of generally inflammatory type and allergic type disorders.
Mast cells are white blood cells that are part of the immune system. They're our first line of defense against the environment, and they actually exist everywhere in the body where the body is in contact with the environment: the skin, the respiratory tract, the gastrointestinal tract, the nervous system, and and and other parts of the body. So, um, what happens is in mast cell activation syndrome, these mast cells, which should be working normally, which which are are geared to fight off infection, fight off toxins in a normal situation, they become dysfunctional and they start to react to things in the environment and even inside the person when they shouldn't. So, they, they start to react inappropriately, and they can react more frequently. They can react in a greater uh amount, and that is what actually leads to um symptom, sympto, symptomatology, um, and severe, severe issues. So, so the, the bottom line is that mast cells are supposed to be good for you. They're involved in healing. They're involved in fighting infection, and in mast cell activation syndrome, those very things that are there to help us backfire and actually can cause damage within us.
It's hard to say whether there's a typical MCAS patient. I think in terms of typicality, you can see from the 100,000 ft level these broad themes of inflammation and allergy. And actually, there's a third general theme to this disease too: abnormalities in growth and development, and potentially any tissues in the body, usually modest and benign. So many people don't even pay them attention, but you know, there's a reason they're developing.
Mast cell activation syndrome really can have a tremendous number of symptoms associated, but I think it's really critical to think about two that, um, I think are very misunderstood and and and mis-uh represented. Um, number one is neuropsychiatric symptoms. This could present as depression, anxiety, OCD, bipolar, um, even autoimmune encephalopathy. Um, this is where patients are often, um, not fully understood. They're often told that it's in their head when, in fact, it's a physiological problem at the level of the mast cell and mast cell dysfunction that's driving the abnormalities in the nervous system causing these symptoms.
Now, in 2006, Dr. Molderings discovered MCAS. He diagnosed um the genetic mutations responsible for it. Then in 2011, uh, Dr. Molderings and Dr. Afron came up with criteria to diagnose MCAS. A year later, an allergist, Dr. Valent, came up with his own criteria, which weighed heavily on seeing evidence for tryptase to be elevated. Now, it's kind of interesting yet problematic in that it's much easier to get a diagnosis of MCAS with Dr. Molderings and Dr. Afron's criteria. With the second criteria, it's very difficult to get a diagnosis for a variety of reasons. And this separated the mast cell experts into two camps. And this is a problem for patients because if they can't get a diagnosis because, let's say, an allergist follows Dr. Valent's requirements for a diagnosis, then they're not going to be diagnosed.
The prevalence of mast cell activation syndrome probably is about one in six people. Um, and that's based on some preliminary research um that's been published. And what that means is that there's a really a broad range of symptoms that people are experiencing. There are people who have that mast cell activation syndrome who may not even realize it. They may have mild symptoms. They may be going to their physician and and dealing with some sort of superficial things that they think are superficial, but they maybe have this underlying. And then there are patients at the other end of the spectrum who have quite severe disease. So again, one in six people have some form of this and may not know it.
The typical patient who comes to see me has been to uh dozens, scores of different doctors and other consultants, um, uh, undergone extraordinary uh arrays of of testing, and uh, often tried a great many uh treatments for various um superficial type issues um, uh suspected or proven, uh, often to little or no benefit. And they quite often have been told by many of their doctors, sometimes even families or acquaintances, that because all of the investigation can't find any clear explanation for the the broad array of their problems, and because treatments tend not to work, uh, all that well, that therefore it's all in their head, it's psychosomatic, or they're just anxious.
When a patient has multiple symptoms in multiple systems, it's very hard for a doctor to accept it. The doctor is not encouraging that he'll find a diagnosis. So the family begin to doubt, the friends begin to doubt, and the patient gets down in the dumps and loses faith in the medical system. Uh, why so much effort in the the challenging diagnosis and the challenging treatment? Because I began learning early that with with these patients, that almost all of them, we actually do manage to find, sooner or later, and most of them seem to have a relatively normal lifespan. So even if it does take a longer amount of time, we have that time available. But the vast majority of these patients do, sooner or later, find some cocktail of mast cell targeted treatment that really does help them feel significantly better. And given that they're likely going to live a normal lifespan, you're talking decades. Quality. It's not quantity of life that's so much the issue with this disease. It's quality of life across decades. So, if they're going to live for decades longer, far better to have a much better quality of life during those decades, enjoy life, be much more productive.
Uh, I've seen patients who came to me, many patients came to me completely disabled for many years, some of them even in a wheelchair, couldn't walk. And then we make the diagnosis. We find effective treatment, and we're blessed by already having a bounty of treatments that have been found helpful in many different mast cell patients. Uh, but many of these patients, we find an effective cocktail, and within just a month or so of finding the the right drug, the right molecular key for fitting into the particular molecular lock that is the individual mast cell patient's particular variant of this highly variable disease, within just a month, they come back, and there's no wheelchair.
Every doctor should know about MCAS, but in particular, the ones that deal with children is especially important for their long-term health. Turns out I was forced to diagnose my own grandchild with MCAS. And, um, that's because nobody knew how to deal with a kid who, uh, had abdominal pain, nausea, vomiting, itchiness, bruising, panic attacks, anxiety, and yet, um, those are all things that we see in MCAS, and very few people really get it. So, uh, when we did make the diagnosis with blood tests and working with gastroenterologists and getting the right biopsies done, Max was put on medication and simple medication and got a lot better. So, the health changed dramatically, almost on a dime. Now, not everybody will get that better that fast, but I was really lucky. And I was also really lucky that I was aware of MCAS, and that Max did not need to suffer for decades like many of my patients have.
So, it took me about three years of working at it to be able to ski again. But when I was able to ski again, my thought was, I'm out doing something. It had been so long since I was out doing something. That was a very magical moment. Now, every day when I get to cross-country ski with my husband, it is the joy of my life. I worked hard to be there. I never thought I'd be there again. He lives for skiing. I live for him. And it is, it's a triumph. And it also helps me sleep. So that has just been a wonderful, wonderful thing to get back in my life.
Right now, I just was able to move into a new apartment, which is not something even like two years ago I thought I would be able to do. Um, but my health has gone to a point where I'm stable enough that I feel like I'm able to start resuming my life again. Um, I'm a yoga teacher, and uh, I practice myself almost every day, but now I also teach uh about three or four times a week. And so I feel like I have everything I kind of wanted in terms of now having more independence, having a job that makes me feel fulfilled and happy. Um, I feel like I lost a lot of my social life when I got sick, and I have a lot of really great supportive friends now. Um, so a lot of times, um, I was talking with my therapist about the Jewish concept of dinu, you know, that, um, "if only this had happened, that would have been enough." And so I feel like if I had just gotten this level of my health back, it would have been enough. But the fact that I also now am getting to live out on my own and to have a job and feel like a contributing member of society, like all of that is just dinu. It's gravy.
Um, I was a helicopter pilot. So I had just finished the advanced pipeline and I was getting ready to select the actual airframe when, you know, I finally went in to see the uh flight doc, and he downed me. I was tired, but I didn't have a thyroid. So my, all my, my thyroid was dying. I wasn't on thyroid replacement. So that was to be expected. So where that started, where that was just me because of the thyroid, or whether that was the POTS, I don't know where one started and one, you know, one, one ended and one started. But then I would be walking down the passageway, and everything would be, it's like the, it was like it was on a ship, like everything was moving, and I, I couldn't keep my feet under me. Uh, my heart would race. And I went to the beach one day with my wife that I was dating at the time. I didn't do anything. I just laid there. And that night, I had heart palpitations. Uh, my head was like, I thought it was going to come out, like, just, I thought my head was going to explode. And it scared, it was scary. I, I thought that I was dying. Like, it, it was, I'd never experienced anything like that. And it lasted a long time. And that was the first time that I knew there was something going on.
So what is POTS and dysautonomia? POTS is among the most common forms of dysautonomia, along with vasovagal syncope, also known as neurocardiogenic syncope. Between those two, that represents several million, if not more, individuals with dysautonomia, but it goes much further than that. The dysautonomia refers to a disorder of the autonomic nervous system. It's the part of the nervous system that we have no control over. So breathing, heart rate, blood pressure, sweating, GI function, our ability to empty our empty our bladders, um, tears, those things that are under automatic control, if you will, is what's controlled by the autonomic nervous system.
As far as feeling better, I think of it as little percentages. There's never anything one thing that gives you any like that gives you a whole set and time. So maybe I'll get a little bit of percent from maybe a medication, maybe, you know, but then there's drawbacks because maybe the side effects. Um, maybe I'll get a certain percentage from something from helps with the headaches. Um, but all of those percentages, they add up just a little bit. So if I get 5% here, 5% there, um, plus time, you know, I think that's been the difference between where I was before and where I am now.
So when evaluating these patients, the the best test, of course, is the history and taking a detailed history, trying to, uh, not be overwhelmed by the sheer complexity of the symptoms. And it's rarely one symptom. It's rarely five symptoms. It's often 15, 30. My record is 103 symptoms in one patient during one sitting. And so, uh, the most important thing one can do is listen.
If the doctor's even heard of it, he, he or she will generally have a negative connotation towards it. I mean, you might even see an eye roll. Um, less so now. So now if you go in for a procedure and especially if you have to go under, right? I mean, I feel like I need to tell the anesthesiologist that I have POTS, whether or not they believe in it or they believe I actually have it. Um, I feel like I got to tell them that. Well, the last time I went, you know, they were like, "Oh, okay. I know exactly what that is." And they actually, you know, repeated it back. And um, so that's different than what it was before. Before, you know, in the beginning, no idea. For a while, it was kind of the eye roll and like, "Yeah, sure you do, bud. Whatever." Um, but now it's more of a, "Okay, yeah, I know about that."
So the treatment is primarily non-pharmacologic. You don't have to go on to medications to have an effective treatment for these patients. And in fact, some have suggested that up to 70% of the improvement can come through lifestyle changes. I, I dropped out as far as communicating with friends, family members. I mean, I, I kind of had a rule like, okay, I'm, I'm going to tell one family member, and it's, you know, it's up to them to tell the other family members. And I told them that they, they knew the rule. Part of that was because I got sick of talking about it. I didn't want to talk about myself. I got sick of because I had the same, to me, this is, I had the same stupid story to say over and over again, right? Like, "Yeah, I'm sick. I didn't do anything today." Um, and no, nothing else has changed, you know? As time went on, like all the guys that I was in the military with went on to do stuff, um, I didn't really have anything to say about, you know, "Oh, that sounds really cool." You know, um, my time when I'm sick stops.
Those are the longest days because it hurts. And it's a weird hurt, but it's a, you know, it's just, just to lay there and to feel that. It's like this is the longest day ever. Um, and, and there's been times when that goes on like all week. It's like, wow, I didn't do anything all week. So, I felt like, you know, when it, when I lose two days now, if I lose two days, I, I get upset because I'm like, I did nothing for two days.
Well, what's important for doctors and other clinicians to know about these patients is number one, try not to be bowled over by the sheer number of symptoms. When I was in medical school, we learned about something called somatization disorder. That if a, if a person presented with 13 or more primary symptoms, then that was almost by definition considered a psychiatric disorder. And what we now know is that it is quite possible for people to have multiple primary symptoms and not have a psychiatric disorder, or have a psychiatric disorder because they are not able to function, and so it depresses them, or because they've been rejected and told there's nothing wrong with you.
Yeah. And there's always the, "Okay, am I going to overdo it?" And I, I, of course, my wife is always like, "You're going to overdo it." But then part of me is like, I might be in bed all day tomorrow for no reason. I could not overdo it and just not feel good. And so if I'm doing, like, let's say I'm doing a project, some sort of, I'm trying to fix something, work on something, at the end of whatever it is that day that I'm working on, whether I've completed it or not, and I have learned this the hard way, I have to pick up all my, whatever it is, and put it away because I might not be back the next day.
So why is POTS and dysautonomia overrepresented in young females? It may have something to do with a greater tendency for hypermobility in young females. So if you have loose collagen, gravity is not your friend, and blood will pool in the legs and in the thighs and will leave less blood to reach the heart and the brain, and that can make you feel very lightheaded. It may also have something to do with volume status. There may be more relative dehydration present. There may be, uh, an association with migraine. We know that patients with POTS, at least 80% of them, also have migraine headache, and migraines are overrepresented, overrepresented in young women. So there's likely also a hormonal effect.
There are four different types of joint hypermobility. There's peripheral joint hypermobility, which is limited to hands and feet. There's localized joint hypermobility, which means that there's two or fewer joints affected. There's generalized joint hypermobility, that means that there's joint hypermobility in the axial skeleton and the extremities. And then there's historical joint hypermobility. That means that the person was hypermobile in the past, but they're not anymore. So it's very common to see dysautonomia in combination with hypermobility spectrum disorder, as well as mast cell activation syndrome.
There are a variety of signs and symptoms that can occur. The musculoskeletal symptoms include joint instability, joint malposition like dislocations and subluxations. Subluxations are partial dislocations. You can also see tendinopathy and, uh, joint pain, and, um, nerve compression. You can also see changes in the skin such as easy bruising and bleeding. You have slightly hyperextensible skin. Um, some people have soft, velvety skin. You can also see, um, atrophic scarring. Gastrointestinal symptoms are also extremely common, such as, um, heartburn, uh, compression syndromes, SIBO, or small intestinal bacterial overgrowth. You see constipation, diarrhea, evacuatory disorders, all kinds of gastrointestinal problems.
Young females tend to have hypermobility and, uh, more than young males, and most of those individuals will never have these problems. But from that large pool is a undefined number or percentage who may develop these symptoms. The same is true of people with slightly low blood pressure or who have slightly high heart rates. That isn't necessarily disease, and, um, but only when they become symptomatic do we start to investigate them.
There are a lot of myths about symptomatic joint hypermobility. One is that the hypermobility spectrum disorders are less severe or less significant than the Ehlers-Danlos syndromes, and it is also, uh, very commonly believed that these conditions do not cause pain, but they absolutely do. It's also a lot of people believe that it's not possible to get their pain improved, but sometimes we can make some really significant improvements with pain. Some people believe that the only therapy is physical therapy, but there's lots of other treatments that we can employ as well. One of the other myths is that everyone who has these conditions is, um, tall and thin, and that's not true. Um, and some people believe that these are autoimmune conditions, but they're not. Um, they're genetic. And it's also, uh, some people believe that they're always progressive. They can be progressive, but not always.
Ehlers-Danlos syndrome, EDS. Uh, the biggest and most frequent one is the hypermobile EDS. And in that situation, we think that mast cells early in life are extending and elongating tendons, ligaments, and gut attachments within the abdomen. And that's leading towards chronic and progressively severe gastrointestinal and vascular compression syndromes.
So when people come to me, they are at such wide, widely variable places in their in their course. So some people are just learning about symptomatic joint hypermobility. They haven't really tried much of anything yet. And it's actually really nice because you're starting with a clean slate, and you have so many different things that you can try. But then there's other people that have been through so many different surgeries and procedures and they might be on, um, peripheral feeding, TPN. So that's harder. That's harder when they've already had a lot of surgeries because you can't undo those. And if they're getting fed through tubes rather than through their intestines, you know, that throws off the gut microbiome and so many other, uh, they have so many other problems that it is, it is harder. I don't believe that there's anyone that I've seen yet that I didn't help in some capacity, um, or at least have some ideas of things that we could do, but it is harder when they've been through a lot more.
I have for the EDS, I, I have very flexible joints, and a lot of times I'll be walking, and I'll go one way, and my ankle will go the other way, and people ask me all the time, they're like, "Did that hurt?" No, it didn't. I didn't even feel it, really. Um, and for the mast cell activation syndrome, my whole life, I, if I ate something or if I laughed a lot, I would get a lot of phlegm buildup in my chest to where I would have to clear my throat over and over again until I finally got it out, or I would feel like I was smothering. And I know it was annoying to the people around me, and it, it wasn't fun for me either. Uh, and I never knew what that was. It just, I just thought it was something that happened to everyone until I discovered what I might have. And I, I would get rashes frequently and very severely, um, to one where one time I was in the emergency room because I, I discovered that I'm highly allergic to tomato plants. Um, and the, the MCAS made it so much more severe.
If someone has symptomatic joint hypermobility that is not explained by one of the Ehlers-Danlos syndromes or another condition, then the diagnosis is Hypermobility Spectrum Disorders. Hypermobility Spectrum Disorders are not less severe than the Ehlers-Danlos syndromes. It's just a different diagnosis. Sometimes people are concerned that they might have the vascular type of EDS, and if so, then genetic testing is always a good idea if the clinician has a significant concern as well, because the vascular type of EDS is definitely life-limiting and involves much different therapies.
Uh, my typical patient coming to see me is actually the person who first came to suspect that it might well be a mast cell disorder at the root of, uh, his or her problems. One of the other things that I think is really important for people that have symptomatic joint hypermobility with any type of movement that they're doing, start low and go slow. It's not what can you do on any given day, but what can you do on day one, day two, day three, etc. Because oftentimes we can do a lot of things on a given day, but then we pay for it days later. So, it's important to start low and go slow.
So, before my diagnosis, um, I was a musical theater major. I was a dance performer. I was, um, a yoga instructor and a massage therapist. And I, uh, was, I've always been flexible, but I didn't really have any pain. I didn't think anything I was experiencing was abnormal. And then, um, in, I think it was about 2018, all of a sudden, and I mean, I've had kids, I got married, all of a sudden I couldn't get out of bed and I was having intense pain all the time. And I went to my GP, and I went to all these doctors, and nobody could find anything wrong.
When I was younger, I was always bendy. I was excelled in dance classes without trying because I had extension. Um, I could always sort of contort myself into shapes. I was a gymnast. Everything was kind of easy. And, um, but I also had some dislocations, and I just didn't think about it, and I never went to the doctor. You know, my, my joints went right back in, and I was just told, "Oh, you're just bendy."
So when I first started my practice in 2017, I knew some information about symptomatic joint hypermobility, the Ehlers-Danlos syndromes, hypermobility spectrum disorders, etc. But I didn't know as much as I know now. I, I am a lifelong learner and learn from my patients, of course, for whom I'm incredibly grateful. But along the way, I started treating more and more people as if they had mast cell activation um syndrome, whether or not they had a formal diagnosis, whether or not I was formally diagnosing them. And I realized once I started addressing mast cell stabilization through LDN and a variety of other modalities, I started to get much better outcomes.
I had always had skin stuff going on as a kid. Like my, I remember my doctor telling my mother, "Oh, she has type A dermatitis," meaning, you know, pressure, anything. I would get hives or a rash. I was always friends with calamine lotion and, um, and allergies, things like that. And it didn't, it just never occurred to my folks to test me for food allergies or anything else. I couldn't ignore it anymore. It was to the point where this isn't my regular daily level of pain. This isn't even post-performance pain. This is like I can barely walk now. I mean, I couldn't get off the couch. I couldn't get out of bed.
I've never been depressed. I've had anxiety off and on. Um, I feel like as an introvert and a performer, that kind of happens. But I've never felt so close to the precipice before. And my family recognized that they were, they noticed a really huge change, not just physically in me, but emotionally, too. Nobody could find anything wrong. I was dismissed by doctors. I actually had a really atrocious experience with my GP, um, because he, one of the major symptoms I was having was POTS, and my heart rate would skyrocket and then drop, and my blood pressure would drop, and then they, it was like they were passing each other, and it happened in his office. And he was in the middle of telling me something or asking a question, and I started to faint, and I like had to grab onto the table, and I said, "I need to interrupt you because that thing I've been telling telling you, it's happening right now." And I was doing my best to stay conscious, and he lost his temper at me in front of my spouse and entire staff of nurses. He just screamed at me like, "You're not making any sense. You're, you're incoherent. Like, get it together. Nobody cares about this more than I do, really." And no one's going to help me, and I'm going to have to help myself. And at that point, I was so incapacitated by the symptoms and the pain, I really was the most depressed I've ever been in my life. I thought, I'm not going to work. This is how I'm going to go. My heart rate is going to, you know, and my blood pressure, and then I'm going to like stroke out or pass out or something.
I would say I'm, I don't, I don't have 100% days every day, but when I do, it's really, really wonderful. And I, my quality of life is just astronomically better. I, I can't, even with the limitations that I have now, the things that I've had to accept about my conditions, my quality of life has improved just exponentially. And I, I can't, um, I can't stress that enough. I was really, really not okay. You know, I have two children and older parents, and, um, I thought, well, I'm going to end up a burden to all of them if I'm can't move. And because nobody would help us, it was very, in the beginning, it was, um, that was devastating. That was, I've never taken what my body could do for granted, but I also never thought it would be so bad that I couldn't do things like walk or carry a cup of coffee to the table or turn a doorknob. And, um, the idea of being that disabled and limited in my daily life, even like forget performing, forget teaching my yoga classes, like, um, it kind of, I felt as though I had nothing to look forward to or live for anymore.
Mast cell activation syndrome is often referred to as a syndrome. It actually is a disease. To be a disease, you have to have certain things, uh, histology, blood work, biomarkers, etc. Well, indeed, MCAS has, uh, abnormal genes. It's gene mutation that causes these little critters to be overactive and secrete chemicals. And these chemicals are measurable in blood and urine. And furthermore, if you do the correct stain, you'll see many mast cells in MCAS.
The initiating event for mast cell activation syndrome is the exposure to prochemicals, implants, mold, microtoxins, pesticides. And that initiating event takes someone, a patient who is vulnerable from a susceptible patient to a sensitive patient. Mast cells are very jumpy little cells, and any little thing to trigger it will cause a cascade of chemicals coming out and attacking the body and giving symptoms. And there are over 50 known triggers for mast cells. Then some are dietary, but it's very variable person to person. Some are very sensitive to gluten, to dairy, to histamine foods, but other people can have those. Um, there are also environmental problems such as heat, which unfortunately is getting worse and worse, cold, chemicals, prochemicals, forever plastics, and so forth. And there are also infections. So mold, uh, and small intestinal bacterial overgrowth, uh, and generalized infections, especially, uh, like COVID, will activate and keep MCAS active until they're treated.
My long-term goal with patients is to is to help them become more tolerant to the environment. So things that would have in the past caused more reactivity or caused a severe flare no longer does that. And that's absolutely possible because there are patients and there are people who walk this earth who are not, um, reacting to mold or not reacting to allergens in the air. They're not reacting to things, and we should be able to, with the right interventions, get mast cell patients to a state where they can have more tolerance for what is unfortunately in our environment.
I guess I, I mean, it's been going on my whole life. I, I guess, um, I mean, ever since I was a kid, if, if my mom changed anything in the laundry as far as soap, I, my hands would break out really badly. Um, so it's, it's been an ongoing, an ongoing thing. I was very self-conscious at work. I sit in a pot of people, and I would eat things that would cause the phlegm, and I would have to clear my throat, and I would feel so self-conscious that sometimes I would even go to another room until it was gone.
Uh, I guess I would say I was scared thinking about it with the, with the not being able to swallow correctly. It would happen two, three times a day sometimes. And it was scary. I mean, am I, I live by myself, so was I going to, I mean, was I going to be able to, you know, was I going to be able to eat properly? And what would happen if I didn't? I had to know how to, you know, do the Heimlich on myself if I needed to. And it was very scary to think about. The other symptoms I could handle. They didn't really, you know, if they happened, it wasn't going to, you know, it was, it was bad, but it wasn't scary, per se. But this, this particular symptom really made me stop and be hyper-aware of of what I was eating and how I was eating it and when I was swallowing.
It would, the restless leg syndrome would make me so uncomfortable that I would have to change positions all the time. I, I would have to go to bed because it was just so uncomfortable that sleep felt like the only escape. And I have a, I have a sit-to-standing desk at work for that reason because my legs would get so uncomfortable that I would have to stand. And I don't have to, I haven't used my standing desk since I started the LDN.
I don't, I don't think there was anything I really kept to myself, per se, but I didn't really share how embarrassed I was by the fact that I would have to clear my throat so much. I knew it would irritate the people around me. And I felt bad, but I also felt like there wasn't anything I, I didn't have a choice because it felt like I was smothering otherwise. And it, that was really embarrassing. It was a really, it was a really embarrassing time in my life.
In my free time, I play on two softball leagues, which I just love. Um, I also play on a kickball league. I like to crochet. Um, I work on diamond paintings. I like to watch TV and movies, play video games. It's a great feeling to that I can fit in and play these sports, and do anything I want to do, really. Um, it's so great that the medicine's working for me, and I can just be a member of my kickball team and my softball team, and nobody's the wiser.
So, the three most common triggers that I see, um, number one is, uh, Lyme disease, uh, and I would call it vector-borne infections. So these are infections that are transmitted by various vectors. Vectors are could be different types of insects, not just ticks. Um, and we know that those insects carry a lot of different bacteria and viruses and parasites. And so that we know that mast cells, one of their functions is to fight infection. So it's inevitable that those types of things are going to be a trigger for MCAS.
Number two is mold and mycotoxins. Um, the, you know, the environment that we live in plays a huge role in, in, um, how our immune system deals with it. And, um, we, we know that mast cells are geared to look at the environment. So if you're smelling, if the mold is in the air, mycotoxins are in the air, and you're living in that environment, that's going to kick up mast cells. So eliminating, um, mold, mycotoxins, remediating, um, the environment is very, very important. So that's a, that's a huge, that plays a huge role, and mold is really everywhere, which is part of the problem.
Number three is implants and various chemicals. When we, when we think about implants, um, certainly breast implants, um, but also dental implants, um, joint implants, so hip replacements, knee replacements, anything foreign that is put in the body, and I would even put in this category mesh, which is very, is used very often for hernia repairs, for instance, can actually trigger mast cells. This is a foreign body that is causing the immune system to to kick into into gear, um, from a chemical perspective, and pesticides, prochemicals, um, combustible products, those are all things, um, that can absolutely be, um, the cause of the cause of actually the initiator of mast cell activation syndrome.
The, the process first is one of taking a thorough history, really understanding the totality of what's been going on in the patient's life. Doctors are taught in training, they need to focus just on the history of present illness, and other aspects of the history like past medical history, uh, family history, social history, review of systems are almost afterthoughts. And so many doctors come to gather information from just the last few days, weeks, months, but this disease has been impacting the patient's life in one fashion or another, to one degree or another, for most or all of their lives.
So we think when we think about people with ovaries who, um, have fluctuations in estrogen and progesterone throughout the month, we see that some people have reactions to those fluctuations in the hormones. They may experience, um, symptoms that are, um, more in the, in the realm of premenstrual. They might have mood disorders. They may have headaches and migraines. And then at the time of, of the menses, they might have, uh, significant bleeding and cramping, um, and a variety of other symptoms and pain. I mean, hormonally, just based on where I was in my cycle, I could be having severe mood swings to the point where I was borderline suicidal for about a week of a month at the time, at a time. On the flip side, people with testicles with high levels of testosterone or potentially low levels of testosterone could also have issues related to mast cell activation syndrome.
I think it'll be a great day when doctors know about MCAS, POTS, and EDS. Hopefully, they'll be taught in medical school when their minds are open, and they're willing to look at disease states across spectrums of different specialties and not live in their little silos when they become a neurologist or cardiologist or allergist, etc. And when we branch out and be able to interact as physicians, and we have the knowledge base, the treatment of our patients is going to get so much better.
There are many people with hay fever, allergies, who never seek attention. They manage themselves in the pharmacy aisles with various decongestants or antihistamines, who may never come to attention. In fact, my own journey, um, when I first heard about mast cell activation syndrome and that it might have a link to POTS, I was not a very sympathetic recipient of that news. I was, I had to go through a process of learning about mast cell activation syndrome, almost similar to Kubler-Ross's stages of death and dying. I, I went through denial and anger about, "This doesn't have anything to do with autonomic function, and this is, uh, silly," and, you know, and then eventually I got to acceptance, and then there's a fifth stage that Kubler-Ross never talked about, which is adoption.
I realize I, I think I've got mast cell activation syndrome. When I sneeze, I never sneeze once. It's 10 times. I have, uh, you know, chronic sinusitis that I wasn't even aware of, and I just got used to, "Well, this is normal." And then I start hearing about it in my patients, and I suddenly discover, "I think I've got this." So, it's made me quite a bit more sympathetic. And now I've identified it at my, my family members, and, and it turns out my father had all kinds of allergies, and, you know, it just wasn't really apparent to us until in retrospect.
So the treatments have to be individualized. Of course, it makes a difference whether you've got one, two, or three of the syndromes. There's some general things. If we're treating underlying MCAS and MCAS by itself, we use, uh, antihistamines, vitamins, flavonoids, we address what are the triggers that led to their problem, and keep them active. And so we have to look for underlying problems. I had a paint salesman who has been sick for 30 years. And I didn't get him better until I told him that he needed to stop, uh, smelling paint because all those volatile organic chemicals were activating his mast cells and giving him emergency room visit after emergency room visit. So getting to the triggers is critical.
So we have the mast cell stabilizers that I mentioned, and then we've got other medications that can be used. We have, um, treatments like low-dose naltrexone, which reduce inflammation and pain, and we have other medications that patients who fluids alone, let's say for POTS, need other medications. When patients come with huge numbers of symptoms, it's overwhelming for the patient, it's overwhelming for their families, it's overwhelming for their doctors, and it's important to try and help patients manage this symptom overload.
Should MCAS be taught in training? And the answer to that is absolutely yes. The preliminary epidemiologic research in this area, repeated studies, strongly suggesting the disease is present in about 20% of the population, at least the western population. And I mean, that, that's an epidemic issue. And so, yes, it, it needs to be taught, uh, from the earliest points in training, with additional nuances added at later stages in training. We need to legitimize this condition, which really has only been on the scene for the last maybe 15 years or more. And so getting the word out, getting the information out there so that we can educate more medical providers, and we can educate even more patients, I think is really where I, I see the future of this and the future of what, um, is going to help patients get better.
There's no cure yet. I like to think that Dr. Molderings, who discovered MCAS, has a cure, and he's very optimistic. And right now, we can do things to help symptoms and modify problems so that it is much more sustainable. Your life does get better. When we learn how to recognize MCAS and EDS, then these stealth syndromes do not need to remain secret anymore. And so I would go back and I would tell little Haley, "Please keep going and please don't stop listening to your system, to your body, to yourself. You know in your heart that what you're feeling is real, and that you matter. That your feelings matter, and your feelings are valid, and your experience is valid, and, um, you're not by yourself. Feels like you are, but you're going to get through this, and it will, it will, there will be some wonderful things and some real hard things. But you're not going to lose yourself. Not really."
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