35. Reeducating Mast Cells with Anne Maitland, MD, PhD

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00:00 

Jen Milner 

Welcome back to bendy bodies with the hypermobility MD, where we explore the intersection of health and  hypermobility, focusing on dancers and other aesthetic athletes. This is co-host Jennifer Milner here with the  founder of bendy bodies, Dr. Linda Bluestein.  

00:15 

Linda Bluestein 

Our goal is to bring you state of the art medical information to help you live your best life. Please remember to  always consult with your own healthcare team before making any changes to your routine. Our guest today is  Dr. Anne Maitland MD PhD, chair of the allergy and immunology working group for the international  consortium on EDS and HSD Dr. Maitland. Hello, and thank you so much for being here today.  

00:51 

Anne Maitland 

I am so delighted to join you ladies. This is an exciting opportunity, especially for a person who is like to sit in  the back of the classroom. This is, this is a new media and my daughter thinks I'm rather cool and I'm actually  moving outside of my comfort zone. 

Page 1 of 13 

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Transcript for Bendy Bodies Podcast, Episode 35: Reeducating Mast Cells with Anne Maitland, MD, PhD 

01:08 

Jen Milner 

Well, we are happy to have you here and happy to have you at the front of the class today to share your wisdom with us. Before we dig in, can you share about your background? Just give us a brief bio.  

01:24 

Anne Maitland 

I guess if you want to start at the beginning, I always wanted to be a physician. My father was a physician. He  was part of the 2% that serviced the 15% meaning he's an African-American physician who actually trained at  Macquarie medical college and went on to be a surgeon. He actually was on the surgical team that saved Martin  Luther King when he was stabbed in Harlem. He always, he saw no limitations for a little brown girl from the  Bronx to go into science and medicine. Always encouraged me along the way, and I thought it was going to be  fairly straight shot, go to a good high school, but I'll get to college. The middle of college, when I'm starting to  think about formerly apply and he's like, I don't want you to go into medicine. And that was like full stop. The  reason why is because he started to appreciate that medicine was no longer becoming a profession, but a  business.  

02:29 

Anne Maitland 

He felt that it would be more important for me to go into graduate school. I actually worked for three years to  understand what it meant to go into graduate school. I eventually landed at University of Pennsylvania and their  MD-PhD combined degree program. I was actually studying the immune system before HIV got a name in the  mid eighties. Here we are in the midst of another immune mediated pandemic. In many ways I'm part of the  minority because there is a national shortage of allergy immunology specialists in the country. I had the pleasure  of meeting individuals who really don't have as much of a grasp of the immune system. It really is almost like a,  another language and trying to appreciate how the immune system becomes tolerant or loses tolerance is been at  the forefront of trying to understand what happens individuals that have a connective tissue disorder.  

03:39 

Anne Maitland 

This is a very relevant conversation on many levels. I look forward to kind of sharing some of the experiences  I've learned along the way. Currently, I'm actually in a very exciting position. Mount Sinai South Nassau  community hospital just formed the first inpatient and outpatient center that addresses Chiari connective tissue  disorders, the mast cell dysfunction. I'm had the pleasure of working with doctors, Ilene Ruhoy, as well as Dr.  Paolo Bolognese. We're trying to build it from the ground up. Hopefully it will be a safe haven for patients who  feel that they can't find a medical home.  

04:24 

Jen Milner 

That that is really interesting. We have, we've spoken with Dr. Ilene Ruhoy before and love her and the work  that she is doing. There are so many avenues we could go down with you and talk about. Many things that you  mentioned that I'm, that I want to go. What about, what about, but today we want to talk about mast cells and all  things mast cells here. Starting with the very basic, what are mast cells and why are they important? Why are we  having this conversation?  

04:57 

Anne Maitland 

I find mast cells and here's the deal, I am a T-cell biologist by training. I had to unlearn what I learned to  understand a cell population that we can't be born without. You can actually be born without T-cells. You can be  born without neutrophils. You cannot be born without mast cells. Interestingly enough, that amounted to a one  or two lectures in first year of medical school, many moons ago. It's an interesting population because you really  don't see them in the blood. Standard blood tests, won't pick it up. They start in the bone marrow, like a man or  woman who joins the police academy. After they get their initial education, that you're going to be a mast cell,  they get their marching orders. They basically go to every single part of the body and act as the first line of  defense for that community of cells that face the environment.  

05:55 

Anne Maitland 

You can imagine like a man or woman who's assigned, to work in times square versus, a small town in New 

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Transcript for Bendy Bodies Podcast, Episode 35: Reeducating Mast Cells with Anne Maitland, MD, PhD 

York state, they have to learn how to meet the needs of that community. It is the community that educates the  mast cell on what its job to do in order to better serve and protect that community. Unfortunately we know little  about the mast cells relatively compared to other cells of the immune system and even the body itself. But, but  in many ways, the mast cell has a lot of key jobs. They have receptors to recognize tissue injury and damage,  which happens in higher frequency individuals that have hyper-mobility issues. They have the ability to  coordinate the immune response to the damage. Not all, damage is the same, like when a man or woman sees a  fire versus somebody down. You want to call the fire department, not the SWAT team, or, and you want to call  an ambulance and somebody who's down as opposed to, the, the calvary. 

07:10 

Anne Maitland 

So, so the mast cell makes the decision, is it a mechanical injury, is an infectious insult. Is it a toxic exposure?  And they're hardwired for recognizing certain dangerous. Depending on what they recognize, they will release  chemicals, right? Muscle orders are recognizing tissue injury and responding to it. Once the harm is contained,  they help coordinate the repair. So, so if these chemicals get released inappropriately, like if your body thinks  

peanut is a parasite, you have these chemicals that go out that have the ability to kill detoxify, recruit in other  help. That's like a false alarm that goes off all the time. What is interesting in that individuals that were bendy  and understand it's a prevalent issue. As much as a lot of my colleagues don't want to acknowledge it. People  

who are hyper mobile, it's probably in the society, which suggests to me that mother nature has an endowed you  skills that really served your ancestors well, before the world changed.  

08:25 

Anne Maitland 

Understand a lot of people did not become symptomatic in the fifties and sixties. It was more of a pronounced  issue. I would say, starting in the eighties and nineties, when, and we're all about contemporaries, I kind of grew  up in the Bronx and Harlem, and I have to tell you peanut butter and jelly on wonder bread with a glass of milk  was everywhere, right? Also milk was still delivered to the, our back doors in glass bottles. Food sources came  locally and we're either wrapped in paper, tin, or glass. We weren't turning on air conditioning. If it was cold,  you put on a sweater. If it was hot, you open up the window and turned on the fan. There wasn't a car  everywhere. We spent a lot more time outdoors, and within 20 years, it's like an Avengers end game, a fast snap,  our environment completely changed.  

09:29 

Anne Maitland 

Our bodies that were designed to fight certain dangers in less than 50 years has completely changed and is  confused on what is truly danger and what is not. In my mind, mast cell orders are to help protect and respond to  injury. The nature of the dangers have changed. These systems that are hardwired, haven't been able to change  course and restore the restore. That type of balance that's needed to say, this is one of those chemicals should be  out. This is one, these chemicals should not be out. You go from mast cell orders to mast cell disorders, and so  under that umbrella of mast cell activation disorders, you have some individuals that have, in my opinion, more  than two organ to them, more organ systems that are involved. The definition of mast cell activation syndrome  in my mind is you have misbehaving mast cells and at least two body systems, right?  

10:32 

Anne Maitland 

Somebody who has hives and brain fog, or somebody who has interstitial cystitis and hypersensitivity to foods,  or anybody who has art, joint involvement and has trouble breathing in. So, so all of those kind of represent  somebody who's an increased susceptibility to having those chemical mediators out there inappropriately. If we  can at least give people that working definition, MCAD, MCAS and MCAD ish, you, then we'll give people the  power to understand what is going on in their bodies. With that understanding, you'll be able to chart out both  pharmacologic and non-pharmacologic interventions to help them feel better.  

11:26 

Jen Milner 

Okay, I'm going to need a couple of days, because that was so rich. I want to just sit with that for a second. That,  that description for me was extremely helpful. I feel like I know more about mast cells than the average person  just from all of this work that we do, but to look at it as something that is being has been hardwired a certain  way and can no longer work. It's like if our system goes and sees, like when our, what do you call it? Fire alarm  goes haywire because it smells the smoke from the burned toast. And it goes, oh my gosh. And then it turns on  the sprinklers. You're like, no, we don't need the sprinklers. That was an inappropriate response to what's going 

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Transcript for Bendy Bodies Podcast, Episode 35: Reeducating Mast Cells with Anne Maitland, MD, PhD 

on here. Right. That's really helpful to look at it that way. To also recognize that there's more than one way that  mast cell disorders or disorganization, or however people want to talk about it can be, can come through.  

12:32 

Jen Milner 

So it's not just hives. I don't think not everybody thinks about joint pain as being mast cell related the brain fog,  all of these things that can walk hand in hand with dysautonomia and that general, well, I can't really point to  one thing that I'm like, this is so bad. It keeps me in bed, but I do get hives, and then my eyes are itchy and my  joints ache. Sometimes I have a little trouble breathing and sometimes those little things are such underlying  issues for so long that we just learn to live with it and don't realize, hey, maybe we could find someone to talk to  about it.  

13:13 

Anne Maitland 

Well, you know, it was a thing. I thank God that we have more resources and redundancy in our system. You  don't, you don't, if you think, what does a police officer have in order to respond to danger? Like, I, in many  ways, I guess this is kind of a relevant conversation in our society as well regarding tolerance and intolerance,  but you don't want a police officer pulling their gun out to get the cat out of the tree. You prefer if they're going  to be upset about somebody who's jaywalking that they just take out their ticket book. There is so it really is a  question in my mind of math cells have very potent chemicals. They have the ability to detoxify venom from  poisonous sticks, frogs, any other creature you think of from Jumanji, they have the ability to alter blood flow  because they release heparin and platelet activating factor.  

14:19 

Anne Maitland 

I actually have one gentleman who had anaphylaxis to ibuprofen, which was complicated with a very horrific  bleeding issue. He started to clot and bleed at the same time called disseminated intravascular coagulation,  simply from taking ibuprofen. He actually had a history of reactions to Aleve. His doctor didn't know that the  relationship to Aleve and ibuprofen were the same. Many ways people who have mast cell activation meeting  those chemicals are being kicked out. That's all we're saying is that you are susceptible to having those  chemicals out there when they shouldn't be right. Instead of saying allergies, meaning let me identify what the  trigger is. Why don't we identify whether or not your mast cells are misbehaving or not. Right. It's a simple  question and understand mast cells, every single part of your body. What does mast cells misbehaving looking  look like in the gut bloating, diarrhea, constipation can absorb, I'm not a big fan of the term leaky gut, but there  it is.  

15:28 

Anne Maitland 

What does it look like if those chemicals are inappropriately released in your brain mood irritability, difficulty  with concentration, difficulty with speaking, difficulty with organizing one's thoughts, what does that look like?  If it happens in the joints, pain, swelling, dis coordination, what if, what happens if it happens in the skin  flushing, itch, hives or swelling, and in here's the thing that is going to force all of us, very resilient individuals.  That's what I find individuals that have connective tissue disorders. Their level of resilience is amazing. Like,  oh, my leg is broken. I'm just going to go back out and finish this performance. And then I'll take your pen. I'm  like, thank God. The, I would find that individuals who this sensitivity, that the, a lot of folks that have  connective tissue disorders has been present, but it was only like, a, if I was using a rubric to scale like  earthquakes, it was maybe a 1.2 that I guy can do with it.  

16:44 

Anne Maitland 

By the time they make their way to an allergy immunology specialist, right. Or hematologist oncologist, because  that's where mast cell disorders were, classically found in no pretty sick, like a lot of primary care don't even  know how to refer to an allergy immunology specialist. There's plenty of data that shows that there's only 80  training programs of allergy immunology in the country, which means there are clinic people who go through nursing school, medical school. Who've never had direct contact with allergy immunology specialists. Never  saw one, never did one, never knew how to refer to them. They ended up using whatever they were taught. Let  me just give you a medication. Let me just give you a medication. Let me just give you a medication. People get  tired of, I don't want to keep on medication. Now they'll go to functional medicine or integrative medicine. And  here's the thing. 

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Transcript for Bendy Bodies Podcast, Episode 35: Reeducating Mast Cells with Anne Maitland, MD, PhD 

17:41 

Anne Maitland 

I don't consider myself a dysfunctional medicine, medical practitioner or integrated. But, but again, the lack of  knowledge of what the mean system is about is as prevalent in allopathic medicine, as it is in other specialties as  well. I would have to say Eastern medicine has a better grasp of it. They just have different vocabulary. Right?  So, so the pivot back to, I think the first question people should ask if they're having different symptoms, right.  Do I have scientists centers of mast cells misbehaving, whether it's in my brain or my gut or my skin or my  joints or my bladder. That's the first question. Second question. Do you get better? Not cured, but do you get  better? If you take a histamine blocker or you take quercetin, although I have to say the American academy of  asthma and immunology, doesn't recognize quercetin or luteolin as something that can stabilize mast cells, but  classically, do you get better if you take, over the counter histamine blockers, right?  

18:59 

Anne Maitland 

That's the second question. Third question, which I find to be the hardest is do you, are you able to demonstrate  that those chemical mediators are out there inappropriately? That's the hardest thing to do because most  emergency departments don't want to order it or don't know how to order it. There's a, I think you need to be  patient just like, Linda, for instance, if somebody is having a heart attack, how do we evaluate you do rule out,  right. Okay, we're going to keep you in the hospital for 24 hours. We're going to check your EKG three times.  We're going to check your cardiac enzymes three times. We might even get an echo or put you through a stress  test. Well, that's the same thing about a mast cell attack. Let's, let's look at you over a period of time to see  whether or not those chemicals are out there in appropriately.  

19:54 

Anne Maitland 

Not because again, you don't want them out there unless you really need them. Like if you got stung by a bee or  better yet, if you got bit by a poisonous snake, you want those mast cells out there, you want those mast cells on  the wall because you need them on the wall. You knew on the wall because they detoxify the venom. That's why  those honey badgers can fight off, poisonous African snakes. Right. You don't want them out there because you  decided to have, a loaf of bread that you bought at the farmer's market and you didn't know it had almond flour.  

Right. So, so I think the biggest hiccup we have is most practitioners don't understand what it means to have a  hypersensitivity disorder. I find that the specialist, the delay in diagnosis is a lot of specialists like, well, do you  have a normal trip days?  

20:50 

Anne Maitland 

I'm like, well, I'm actually pretty good right now. It's when I had to, I went into the pharmacy and they were  burning candles. I was like, Pooh again. So, and I think right now, we're just trying to get a common lingo and  say, can we say the mast cells are misbehaving or not? That's, that's how I see it are your mast cells  misbehaving. The question after that should be why your mast cells misbehaving. I think this is where, both  children and adults that have a connective tissue disorder because they look fine. People don't think, and  especially, and he's, here's as much as doctors and nurse practitioners and nurses and physician assistants and  physical therapists, we all profile, that, and because, and the tools that we use to profile are not, are pretty dope.  And, and by profiling and, you're like none of the above while you come in with abdominal pain, right?  

22:03 

Anne Maitland 

And the blood work is pristine. Well, mast cells let last time I said, you can't really see them in the blood. Right.  Nobody thinks to check a histamine or tryptase level, right? The organ systems look normal under radiology.  Right? So, so in a hundred years, went from giving the patient the benefit of the doubt in the story to relying on  tests that inadequately assess whether or not mast cells are misbehaving. People have a medical honesty for  years, until they run into somebody who says, you look a little bendy, and I know people who are bendy, this  can happen. But, but because we profile for instance, as an African-American woman, if I have chest pain and  all the testing is normal, what do they normally say? Why not even be African-American, it's just women. They  say you have anxiety disorder, right? Unfortunately, in the old days, when we had anxiety disorder, they would  give you a tricyclic agent, which actually is a really good mast cell stabilizer, right? 

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Transcript for Bendy Bodies Podcast, Episode 35: Reeducating Mast Cells with Anne Maitland, MD, PhD 

23:29 

Anne Maitland 

SSRIs don't do that. The Prozac, Zoloft don't stabilize mast cells. Also the anti-histamines that were readily  available over the counter. Those are the first-generation anti-histamines, they work better than the second  generation testimonies. I can't tell you, I have patients in their seventies and eighties that have been on Benadryl  since they were knee-high to a duck, I sleep better and less itchy. I'm like, I wonder why. So, and the Zyrtec,  the Allegra, they are second generation, they don't work as well. Right. But they give longer action. Now we  have less people operating under the influence of medications. Again, when we become so tunnel vision  regarding the type of medications that we will use, we're missing the side effects of these medications that were  so helpful for people who have these issues before the world changed.  

24:46 

Anne Maitland 

I think if we can think about what mast cells are supposed to do, right. Kind of let them know the world is not so  dangerous, because I can tell you, like, as an allergist, how do I treat allergens that cause sinus disease or  asthma, I give it to you, but I give it to you in a shot form when you're relaxed, as lax as you can be with me  coming at you with a needle. Right. So, so In my opinion, the treatment of mass disorders is to show tell the  body you're in a safe space. There's lots of ways you can approach that both pharmacological and non pharmacological right. Reduce the tissue injury, which you need to do individuals that are dancers and  swimmers, because that's all you do is you keep on pushing yourself to the point that you end up having more  injury. You want to be able to stabilize those joints.  

25:46 

Anne Maitland 

For instance, you stabilize the joints, you reduce the searchability, that alarm going out, right. Just restraining  the mast cells with medications. By the way, you're only restraining one out of the hundreds of chemicals that  mast cells release. If you take histamine blockers, right. By the way, even cromolyn, and of course the tin and  luteolin stabilize, mast cell degranulation, meaning it's much harder for the mast cells to deregulate, but again, if  

they're your police officers and you're your peace corps cleanup crew, do you really want to completely restrain  them? Right? And, and by the way, mast cells are found in like shellfish. They have lots of ways to out. They're  like that main character from 24, I will figure out a way to get around the restraints because they think they're  trying to help. If we can just change our mindset on what are the mast cells supposed to do, and how can we let  them know that they don't need to do this in this circumstance, you can reinduce talents, just like you can lose  tolerance.  

27:12 

Anne Maitland 

I'm a believer that you can reeducate the system to restore tolerance.  

27:19 

Jen Milner 

That's, that's so interesting. You mentioned the anxiety attack. I was thinking about how that kind of parallels  what you're talking about with mast cells. When someone has anxiety attack, they're having these feelings that  they think their body is having this over compensatory response for what the stimulation is. You can't tell  someone with anxiety attack, just stop having those thoughts and feelings. You just acknowledge that they are  not appropriate for the level that they're being challenged and help them kind of move through that and trying to  encourage your mast cells. You are having an inappropriate response to what's going on. Let's help you figure  out how to have an appropriate response. Let's figure out how to stabilize it and have a more accurate response.  Right? We're looking at trying to get an MCAS diagnosis, it sounds like it's multifactorial, but it's not  impossible, but that part of it is a patient education.  

28:23 

Jen Milner 

Like knowing these things could all be linked together and it's okay to go get help before it's crazy bad. It's  physician education, medical profession, education. As you mentioned with the heart attack, that there are  protocols that you could go through to try to help find the MCAS or the MCAD, but they're not necessarily  being looked at. It is having that education of what do I do with it next? Is that fair to say? Because I know we  have a lot of people say to us, how do I get a diagnosis? 

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Transcript for Bendy Bodies Podcast, Episode 35: Reeducating Mast Cells with Anne Maitland, MD, PhD 

29:00 

Anne Maitland 

Literally? I, I would, I think there are plenty of sources out there. First of all, the mastocytosis society has a very  concise assessment. There are several books out there. Matter of fact, I'm going to give a shout out to Amber  Walker, who just came out with the trifecta passport, who, a very concise explanation as well. I will, I will also  acknowledge Diana Levine. God bless her for going up to all of us who were in the lecture circuit, not the  frontline of allopathic medicine, but to a lot of patient organization meetings and saying, this is what we're  seeing. Yes, Disjointed, she got all of us to volunteer our chapters because were so we are so overwhelmed,  what's going on with, so many people, both children and adults acquire so many things because the longer this  goes on, it's like era, the longer, this goes on, the longer it goes on, but then you start securing other injuries and  other organ systems become involved because that stress factor never stands down.  

30:20 

Anne Maitland 

Stress factor, the more chemicals get kicked out, more collateral damage from the chemicals in passing forward.  We wanted to make efforts to educate the patients because honestly, most patients probably have more  knowledge on how to buy a used car than it is to identify a practitioner who can help them. We want to educate  our colleagues, especially the primary care, because here's the thing that's your, post be your guide, not  necessarily your gatekeeper, who steers you, it's like I, in the first thing that practitioner has to admit, I don't  know this, but this is who I think you can go to, who might be able to take that Baton and take you for, right.  And that's how I started. Honestly then I, I trained institutions that all had in-house allergy immunology  practitioners. I learned about mast cells until I met a little boy who I was the 11th allergy immunology specialists that he had met.  

31:34 

Anne Maitland 

He was for asthma anaphylaxis, joint pain. Couldn't go to school, sensitive to change. His whole family was  down to like eight foods. And, and here's the thing. People have a tendency to focus on what they eat. I get that  you have more control supposedly over which you eat than the air that you breathe, but you swallow one to two  times a minute, you breathe 18 times for a minute, and your skin is always exposed to the environment. Guess  what? All of those organ systems have to weather what's coming in is health. If you are not. If they think it's not,  and a dangerous signal goes out, skin, respiratory tract, gastrointestinal tract, brain's going to take a hit, joints  are going to take a hit, bladder's going to take a hit, and it just goes on and on until somebody says, and people  really decline, the use of all the social capital, the practitioners are frustrated.  

32:44 

Anne Maitland 

And, some frankly get fired from their practice, from practices, which is, and here's the thing. I'm not saying I  know all of it, but at least I, again, most patients come to my office. I think that they'd rather be at a concert well  before COVID then having to spend money for doctors and tests that don't give you any answers. I have to tell  you, this is an old story. It now it's EDS, POTS and an MCAD, 10 years ago, it was fibromyalgia before that it  was gluten. Whatever, Francis Peabody talked about regarding the woman who was deemed nothing's the matter  with her back in 1927 to the Harvard community, right? Who he says, quote, unquote, suffered at the hands of  many of the practitioner before she showed up at that Boston hospital, who then said, we have all the scientific  advancements, and we're going to figure out what's going on.  

33:49 

Anne Maitland 

Lo and behold, all of their testing was normal. They said, there's nothing wrong with it. And kicked her out.  That was a hundred years ago. I'm thinking, what kind of tools did you have a hundred years ago where you  could be so arrogant, right? So, so it's education of the patient so that they can be a better consumer, because  

that's exactly what you are in this healthcare system. Education of the practitioners would say, you don't know  about this. This is what you need to look for. Like here, asthma, which is a mast cell disorder of the lungs, in my  opinion, is common. 10% of the population. 70% of them are undertreated underdiagnosed, because we don't  screen for asthma until you have an attack. With ad, typically nobody likes to venture outside of their little  corner of the sandbox, right? Pulmonologists don't want to talk about the nose and sinuses, and they certainly  don't want to talk about the skin dermatologists. 

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Transcript for Bendy Bodies Podcast, Episode 35: Reeducating Mast Cells with Anne Maitland, MD, PhD 

34:49 

Anne Maitland 

You have to go. I ended up going to all these different practitioners and nobody's taking a look at the level  before, right? Even allergy immunology and hematology, oncology, hematology, oncology has a tendency to  focus on the cancer. I'm like, I'm trying to make sure you don't get there. Right? Allergy modalities, I have the  tryptase is normal. I'm like, well, people have peanut induced anaphylaxis. Their chip has never goes up. So  what does that mean? So our testing is insufficient. If you've ever collected urine for 24 hours and then had to  put it in your refrigerator, which a lot of people are not very happy about and then have to take it to take to the  lab and the person who listens sit on the counter and not process it properly. We have to come up with just like  we had to come up with a rapid test for COVID.  

35:48 

Anne Maitland 

We have to come up with a rapid test for mast cell disorders. It has to be different types of testing. You just can't  just like heart attacks before we would only look at seek creating kindnesses, but then they added onto  proponents. They added on, I mean, so we need to do the same thing from mast cells because here's the thing,  what are the two of us has a disorder. It's just a question of how well controlled or not it is, given the prevalence  of insults to our respiratory tract skin and gastrointestinal tratk nearly one out of, two of us more than likely has  a mast cell disorder. Out of them, by the way, mast cell activation syndrome by definition in many ways is a low  grade anaphylaxis because you basically saying, do you have something between just your skin or respiratory  tract or cardiovascular system and anaphylaxis? Let me, let me just reiterate this anaphylaxis is a grading system, just like earthquakes.  

37:00 

Anne Maitland 

You can have a 1.2 where you just have hives or you have a 5.6 where you should call 911, 10 minutes ago.  Okay. People who have mast cell activation syndrome, essentially at least two or more organ systems, some  have cardiovascular, respiratory compromise. There's ways we need to improve the education of both the  primary care and specialists and the patient population. They know like when you're trying to buy a car, what  kind of car do I need? I have a gas mileage. I'm like, well, I want to spend with this. And here's the thing. Once  you get a working diagnosis, first of all, it's a relief because so many people have been told that this is just in  their heads, which in my mind, and what Francis Peabody called a hundred years is called medical failure, you  fail to pursue the truth. So, so I think most people are just relieved that they come into my office and I say to  them, yes.  

38:09 

Anne Maitland 

By the way, you're sitting in a W, like, really, I guess you are. Do you ever get lightheaded when you stand up?  When people ask me, they're looking at me like, wait a minute, you're an allergist. I'm like, yeah, I need to ask  you this. I got the same look when I presented a similar abstract at the American academy of asthma allergy  immunology, back in 2013, they're like fellow allergists. You're telling me, you have to bend people to figure  out whether or not their mast cells and misbehaving. I'm like, that's exactly what I'm telling you.  

38:41 

Linda Bluestein 

Wow. That is so much fabulous information. And so much to unpack. One of the things to me that is so  challenging is for people to understand the relationship between hypermobility and connective tissue disorders,  because obviously those are not the same, but they're related. Understanding the relationship between those and  mast cell and mast cell and pain, because we know that mast cell activation or mast cell disorders are also  related to painful syndromes and can contribute to pain. Can you explain about that?  

39:18 

Anne Maitland 

Mast cells were originally identified, not in humans, but in tadpoles, in the 1860s. Then, then Paul Ehrlich, who  was one of the founding fathers of immunohistochemistry, but also one of the considered one of the founding  fathers for translational medicine. He's the one who identified mast cells in every part of the connected tissue in  human beings. Right? If you, then you, if you were to stay in the connective tissue for mast cells, like we do for  people, we're trying to see whether or not they have a clonal mast cell disorder, like massive systemic  mastocytosis or monoclonal mast cell activation syndrome. She was allowed to terms to say, are your mast cells

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Transcript for Bendy Bodies Podcast, Episode 35: Reeducating Mast Cells with Anne Maitland, MD, PhD 

misbehaving? Because there's something broken within some of them, as opposed to what most people have is  what I consider nonconal and secondary mast cell activation syndrome, meaning mast cells there being good  police officers and repair persons.  

40:21 

Anne Maitland 

They're just getting bad orders. Basically if you do a stain, just like they stain for small fiber neuropathy, and  they do a special stain to look at the nerves. If you were to do a special stain from mast cells, and by the way,  and this is what's really important. Mast cells are tissue based. They're less than a thousand circulating in the  blood for you to pick it up, right? You really want, if you got just like somebody having a heart problem, you  want to look at the heart. I mean, the blood can give some good collateral information, but you really want to  look at where the problem is. If you were to take a piece of skin or a piece of gut, like we normally do, when  

they do an endoscopy or colonoscopy and stay in for mast cells and stain for nerves, you'll find that they sit right  next to each other embedded in the connective tissue.  

41:10 

Anne Maitland 

Right? If the job of the mast cell and the nerves are to act as early warning system and early response teams,  there's where that trifecta, that triad that I'm talking about, you have the epithelial barrier. In an average adult  has 75 square feet of territory. That's always exposed the environment, whether you're talking to air with the  

skin, what you swallow with the 25 feet of gastrointestinal track with, from the tip of your nose, to the base of  your lungs and the urogenital tract. They all have different, it's all different connective tissue, epithelium lining,  but it is connected tissue right below the surface area. You have the mast cells in the nerves and guess what they  do, they talk all the time. They're like to seal team six. So, so, and that's what you want because that epithelial  lining has to deal within just, a centimeter.  

42:16 

Anne Maitland 

Has to deal with 10 times the amount of foreign entities. You have cells in your body talk about having gorillas  at the gate, right? So, and here's the thing, what a, what our bodies need to do. We need to bring in oxygen. We  need to bring in nutrients that we need to get rid of the waste products, which means we have ports of entry and  exit. Who do you think is guarding that? Who do you think is supposed to respond if somebody is trying to get  

in my mission? So this is a very old theory. And, and I have to say, I was first introduced to this by a colleague,  who has a wonderful story that I would recommend reading in the New York times. So, and I first met her when  I was a lab technician in Miranda. I worked for a few years before going off to like combine the green program,  because I'm like, what exactly does a graduate student do?  

43:13 

Anne Maitland 

She gave a lecture back in 1987, talking about the danger theory. Because at that point in time, one of the major  tenants of trying to understand how the immune system turns on turns off was tarns. She said, and the argument  there was, well, we're just born with all the cells that recognize us, right? The, those cells and those proteins  won't attack us. The only go after what's not us, but then how do you explain pregnancy? Or, how do you  explain going into a new country and trying new food? I mean, so she's like, it is tissue injury that tells the  immune system and the nervous system something's wrong. Right. And, and what was into why she peaked my  interest was one of the papers that she wrote the lead author was her dog. And talk about her beginning. She was  a waitress at a diner that was next to Scripps in California, and she was listening to the scientists talk and she  asked a really good question.  

44:30 

Anne Maitland 

They're like you to go to graduate school. And now where is she? She's at the National Institutes of Health.  That's awesome. Right. So, sometimes you need to be from the outside in many ways, a lot of people would then  be bodies are on the outside of healthcare looking in, but as a group, we're going to be able to change things,  right? We have to change how we think about things. We have to change about how we're dealing with our  environment and appreciate that our environment, whether we want to admit to it or not has completely changed  and less than generation, whether you're talking climate change, whether you're talking about access to food  sources, whether you want to talk about the fact that we spend more than 90% of our time inside of something,  building, car, mall, all manufactured. So the air, we breathe the stuff. 

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Transcript for Bendy Bodies Podcast, Episode 35: Reeducating Mast Cells with Anne Maitland, MD, PhD 

45:30 

Anne Maitland 

By the way, even clothing think about it. What was the seventies? That was the polyester age and how I guess to  back then was really irritating. They worked really hard to come up with better fibers, but think about it, how  our food was produced and stored how the clothing that were back then, the soap. Now you need a chemistry  degree to understand what's in it. So, so we are being inundated with substances. Our body has never seen some  of them that actually caused direct injury. Like we have more microparticle plastic in our lungs. Right.  Nowadays, what do you think that stuff is doing? You know, it's crazy. It's, it's causing micro injury. And here's  the thing about mast cells. They're, they're really nerves. They're kind of like ninjas. I mean, you've got to line  them up and see them. Linda, you remember that you remember the term that we try to identify people that have  like pain syndromes out of proportion to exam, right?  

46:40 

Anne Maitland 

Going back to that little boy that I told you about listening to their story, and here's the thing I had more than  seven minutes to listen to their story. Right. Listening, he came out rashy, God blessed the family. They have a  pediatrician. Old-school he says, look, I don't know what you got, but I want you to keep breastfeeding. I want  you to limit your diet and try to stay in a wholesome environment. And he was fine for a year. Pediatrician,  retires the kid on the block comes in, why isn't your kid on milk? He has to get four vaccinations at once.  Progress completely. Jesus walked in. When Jesus walked out and they had three years of him having asthma,  gastrointestinal distress, he saw at least 27, 28 providers before he came to my office. The only reason he came  to my office is because I had taken care of a patient that has systemic mastocytosis.  

47:45 

Anne Maitland 

Heard his mother had heard something about connective tissue disorders and mastocytosis. So, and I attended  one of the three programs in the country that studied mast cells. Wow. That's the only reason that I met them  and I just looked at them and I'm like, you look really long sitting a certain way. She's like, yeah, I think we  have Ehlers-Danlos. At the time it was classic, it was type three. I'm like, and so of course I had to go to the  computer, my reference point, Dr. Google and ask, okay, is there anything out there regarding mast cells?  Because that's what I was thinking of. I only know two systems that can cause that type of reaction like that, and  that would be nerves and mast cells. Right? As an allergy immunology specialist, I know about nerves, but I do  know that there are plenty of non immune mediated, physical triggers.  

48:52 

Anne Maitland 

Think about hives. You have cold induced hives, you have vibration induced hives. You have solar induced  hives. You have dermatographism, which is pressure, all these things that are nerve mast cell related, causing  swelling and itch and hives. We also know the same thing for asthma. You have cold induced, asthma humidity,  induced asthma. You have all these non immunologic triggers that cause problems in the skin and the gut and  the respiratory track. And, and I still remember the first patient that came to me with interstitial cystitis saying, I  have some dollars. I'm like that doesn't I'll test you, but that doesn't sound right. Again, this is not about  allergens, not me finding a mugshot of IgE that recognizes oranges. It's a chemical issue. When your body is  stressed, isn’t going to like the temperature or the humidity.  

49:58 

Anne Maitland 

Mast cells and nerves talk to each other all the time in the epithelial layer, the connected tissue that is exposed to  the environment. That's trying to figure out what's coming in. Should you be there or not? Is this the right  temperature or not? Is this the amount right. Amount of water or not? It is all about how we are navigating our  step-by-step journey in the environment that we're in. It sounds like it's education.  

50:27 

Jen Milner 

Which I feel like is a huge topic for us everywhere, but it's not just educating physicians, educating the patient  and also educating the body reeducating, the mast cells to respond appropriately reeducating the body to support  itself. So just education is key all around. This podcast has been horribly educational for me horribly in a good  way, hugely educational for me and helpful. Thank you. 

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Transcript for Bendy Bodies Podcast, Episode 35: Reeducating Mast Cells with Anne Maitland, MD, PhD 

50:57 

Anne Maitland 

So my private practice has now folded into a group called clinical paradigms, where we have a, a, it's kind of  hard to call Dr. Pizano a nutritionist. She has a PhD in nutritional genomics. If I, I have to tap out after the Krebs  cycle, right. But she has the resources. So she has a wonderful person, who is a Pilates instructor named Sabrina  Foss. She has a wonderful woman who helps with addressing the emotional and health burden there that, trying  to tease out all that has happened along the journey that has put up mental defense mechanisms to having insults  happen to you. Right? She also has basically nurse nutrition specialists who coach you along the way. If we can  get the body to operate more efficiently, if we can reduce the mast cells and the nerves down to a base, a level of  activity saying, the temperature shouldn't be a problem.  

52:23 

Anne Maitland 

Or me putting my hand out here, shouldn't be such a stress addressing the cervical spine. Honestly, it was a lot  of structures that go through here. If you don't, if this is a problem, right, then you have people who have  swallowing difficulties. Which leads me to the third person, Dr. Isabel Brock, who brings her experience of the  French treatment of EDS and comorbid disorders, because she practiced there for six or seven years, and now is  here in the us. We all talk to each other, just like you have cancer teams and heart failure teams. We now have  an EDS mast cell, neuro combination going. I tell people, both children, their caregivers and patients, you're like  a Maserati, trying to drive on the streets in New York city. Right? You hit one pothole and that's like a $15,000  repair. 

53:29 

Anne Maitland 

And then you're going to take it to a GM dealer. I'm not trying to knock GM dealers, but your body, is an  exquisite biological machine and individuals that have undiagnosed connective tissue issues, immune  dysfunction, and neurological dysfunction, you keep on pushing it and you end up with increased wear and tear,  pay that price, both in your mental and physical health, which are tightly booked. It's still a learning journey for  me because I will reach out to them. I'll reach out to Dr. Ruhoy, I'll reach out to Dr. Bolognese because we're all  looking with a different set of eyes, right? We have to step outside of our area of expertise to understand the  interconnectedness between the mast cells, the nerves and the connected tissue.  

54:26 

Jen Milner 

I agree. And we are all about teamwork here. We love having a variety of people that can pour in from different  points of view. That's why we're so grateful to you for coming in and sharing your expertise on this for people  who want to learn more, how can they get in touch with you? Where can they find you out in the internet world?  

54:49 

Anne Maitland 

I think the easiest access is either clinicalparadigms.com or the center for Chiari EDS, MCAD at Mount Sinai.  

55:08 

Jen Milner 

Okay. We will have those in our clinic, in our notes for you, so that you can find those. There we are so grateful  Dr. Maitland for you coming on and having this conversation with us, you've been listening to bendy bodies  with the hypermobility MD, and we've been speaking with Dr. Anne Maitland, MD PhD, chair of the allergy  and immunology working group for the international consortium on EDS and HSD. Dr. Maitland, thank you so  much for taking the time to come on the Benny bodies podcast. We are so grateful for the wisdom that you have  shared with us.  

55:43 

Anne Maitland 

No, I appreciate yours. Next time, I hope to hear more about the experiences that you've been on this journey  because all of us are talking from each side of the bed rail or bedpan and see,  

56:00 

Linda Bluestein 

Definitely, yeah, it's fascinating. It's fascinating. These, these groups of conditions are so humbling, I mean, it 

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Transcript for Bendy Bodies Podcast, Episode 35: Reeducating Mast Cells with Anne Maitland, MD, PhD 

just, every day, it's you realize how much you have yet to learn and, but how much we already know and how  much we can do for people.  

56:19 

Anne Maitland 

Be kind to yourself, really, be kind to yourself, start there first. And, and again, don't give up hope. There, there  are more people that are working together and on all different types of levels. In many ways, what you're doing  now is acting as a beacon for other lighting away for people who just don't have those resources. So I appreciate  all that you're doing. Thank you for this one of the invitation. Absolutely. Thank you. Thank you everybody for  tuning in today.  

56:58 

Linda Bluestein 

Thank you for joining us for this episode of bendy bodies, with the hypermobility MD, where we explore the  intersection of health and hypermobility for dancers and other aesthetic athletes. If you found this episode  valuable, we hope you will share it with a friend or colleague. Please leave us a review on your favorite podcast  player. Remember to subscribe so you won't miss future episodes. Be sure to subscribe to the bendy bodies,  YouTube channel as well. Thank you for helping us spread the word about hypermobility and associated  conditions. Visit our website, www.bendybodies.org. For more information we want to hear from you, please  email us at info@bendybodies.org, to share feedback, to learn about bendy bodies, founder and cohost, Dr.  Linda Bluestein visit www.hypermobilitymd.com to learn about cohost Jennifer Milner, visit www.Jennifer Milner.com.  

58:05 

Linda Bluestein 

The thoughts and opinions expressed on this podcast are solely of the cohost and their guests. They do not  necessarily represent the views and opinions of any organization that thoughts and opinions do not constitute  medical advice, but should not be used at any legal capacity whatsoever. This information is not intended to  diagnose, treat, cure, or prevent any disease as this information is for educational purposes only, and is not a  substitute for medical advice, diagnosis, or treatment. Please refer to your local qualified health practitioner for  all of your medical concerns. We'll see you in the next episode of the bendy bodies podcast.