Mast Cells to Microplastics with Dr. Anne Maitland and cohost Dr. Dacre Knight (Ep 191)

Transcripts are autogenerated and may contain errors

Dr. Anne Maitland: [00:00:00] There's a great story coming out of MIT with in from the towel lab that shows that Borrelia, which causes Lyme disease, spends one fifth the genome avoiding the complement system. So if you have an undiagnosed complement disorder, guess what you're gonna get. You see that bug? You don't know how to fight it because it's figured out how to get around your systems.

Dr. Linda Bluestein: Welcome back every bendy body to the Bendy Bodies podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility md, a Mayo Clinic trained physician dedicated to helping you navigate Ehlers-Danlos Syndrome and complex chronic illness. Today I'm joined by Dr. Daker Knight, who is not only an expert in EDS HSD Pots and Mast cell disorders, but is also joining me as a recurring co-host.

Dr. Knight is the medical director of the UVA Health [00:01:00] Hypermobility Disorder Center, which is officially partnering with Bendy Bodies. Today we're going to be talking with Dr. Anne Maitland. I am so excited to chat with her as someone who has had lifelong allergies and mast cell related symptoms. I'm always intrigued to learn what the latest information is in this very important allergy and immunology space.

Dr. Maitland is the medical director of the MUSC Ehlers Danlos Center and an Associate Professor of Medicine in the division of rheumatology at MUSC. She's a nationally recognized expert in allergy and immunology with a focus on improving access to care and advancing the diagnosis and treatment of immune mediated conditions, including Mast Cell Activation Disease.

Dr. Maitland collaborates on innovative multidisciplinary care models for complex disorders like Ehlers-Danlos Syndrome. She serves on national committees and scientific faculties dedicated to mast cell disease, health equity, and integrative medicine, and is a fellow of both the American College and the American Academy of Allergy, asthma and Immunology.[00:02:00] 

As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special hyper probability hacks. Here we go.

Well, I am so excited to be with Dr. Maitland here today and of course, again with Dr. Knight. Dr. Maitland, thank you so much for joining us. 

Dr. Anne Maitland: My pleasure. It's been a minute since we last chatted. 

Dr. Linda Bluestein: Yes, it, has been a lot more than a minute and oh my gosh. I feel like so many things have changed in this space.

It's so funny because I know sometimes people get frustrated and very understandably so. It feels like things are just moving too slowly and we're not making enough progress, but we really have learned a lot of, new things. You've been doing some fascinating research and I would love to dig in, particular to this new paper that you published that looks at allergic disorders through the lens of epithelial barrier dysfunction.

Can you tell us basically what that means [00:03:00] and why you think this is the right time to have this conversation? 

Dr. Anne Maitland: I would've to say within the past 50 years, we've seen a huge shift in the burden of disease. I would say since the 1960s we started seeing the rise of both immediate disorders such as food allergies, rhinitis, asthma, and I would also say some neuropsychiatric, and neurodevelopmental disorders as well.

along with delayed hypersensitivity disorders like myasthenia gravis, multiple sclerosis, Crohn's disease. And you know, there's been various theories that have been put forward to try to explain the rise of these hypersensitivity disorders. You know, there was the hygiene hypothesis, but that wouldn't explain, you know, individuals that live in communities that are not necessarily considered high net worth, that has the ability to maintain, you know.

Huge hygiene issues where all those disorders are on [00:04:00] epidemic levels now. And so we wanted to understand why you would see such a dramatic change in disease, like one out of two individuals are now being treated for an immune mediated disorder. I find it hilarious that when we watch Super Bowl, half of the commercials are some medication to suppress some aspect of our immune system to control some chronic disorder.

And so the best, set of ideas that I thought rotted together was the fact that we have so changed our environment that the genes that we've inherited to detect, and respond to classic dangers, when our ancestors weren't living with, you know, filtered water and food supplies that are supposedly protected.

And, you know, we were using pine, you know, we then pine saw, now we're using all these type of cleaners. The fact that our food supplies have been completely changed. I find it interesting that when we go to Europe, you know, their refrigerators are [00:05:00] like a third of the size because they buy everything fresh, not shipped from, you know, you know, Columbia, on a boat and, you know, hopefully lands on your local market where you're, or you know, welcome to New York, you buy it from a vendor on the street.

where our food supplies have completely changed the air quality. We, and the time that we spend indoors versus outdoors, all of these are insults to the borders that separate our, from our outside environments outside. So you're talking about the skin and the linings of the, all the internal organs, whether you're talking the respiratory tract, the gastrointestinal tract, or the urogenital tract, the uttered salts.

so I would have to admit that we live in a very toxic environment. It just happened within 30 years. And I think the children were the first to manifest. But us more seasoned individuals have caught up. And now we are seeing that [00:06:00] when individuals have like chronic upper airway condition or they have food intolerances or they can't even tolerate going into Bed Bath and beyond, not to besmirch one of the national organizations, but you know, when people are spraying things into the air, you know, the, first thing people will do will go to an allergist and the allergist will skin test, but essentially looking for an antibody that sits on mast cells.

And I would have to say within the past 10 years, maybe 15 years, there was a growing number of us who would say, you know, patients are reacting and allergy testing is completely negative. So clearly there must be something with the borders and how the borders recognize danger. And then how it responds to danger, which is if you watch any like animal kingdom show, you have to be able to detect danger in order to not be eaten.

So, [00:07:00] or, you know, if you've been by some Jumanji creature, you know you're not gonna be taken out by a toxin. And so what we have inherited from our ancestors, which served our ancestors well in that type of environment, has been completely changed by industrialization. And I would've to say the best theory that's been put forth is the epithelial border or barrier hypothesis, saying that there are things in the environment, both chemical triggers, infectious triggers, and also, physical triggers that act as injury to the borders.

Those and the borders are not just some passive gate keeping us apart from our environment. They have the ability to detect danger and call and help. And the first line of defense isn't the mast cells, it's actually the somatosensory nerves. And I would say the Nobel Prize that was awarded to two, [00:08:00] gentlemen on the West coast, Dr.

David Julius and Artem Paton, I always mispronounced his name so I apologize. But they show that the somato nerves actually have receptors that can detect toxins and dust mites, and that can actually sensitize the skin or the respiratory tract as a danger. And now the mast cells will be called in because the alarm has been set out.

So I would have to say that. I started to appreciate individuals that were reacting, but allergy testing was complete negative dating back to two, the early two thousands, and it really wasn't given a name until 2010, 2011, and was given the name Mast Cell Activation Syndrome, which are the basically the cells that have been found in sea squids to birds, to reptiles, to humans.

And guess what they sit next to? [00:09:00] They sit right next to the nerves in between the blood vessels and the epithelial barrier. So you have this triad whose job is to detect danger, sound the alarm, and call an appropriate help. The help that gets called in are the mast cells because they have a lot of potent chemicals, which is great if you got bit by some snake or spider or you got some physical injury, they have a host of chemicals that you want out there to contain that danger and then clean up after the dangers contained.

But these poor cells that have been profiled as like bad characters, that should have been eliminated. Well, last time I checked there's not a single human alive that lacks mast cells. So I, think it's unfortunate that we treat the cells that we've inherited as one trip ponies, and it is an interaction [00:10:00] with all those cell systems, which are represented in every organ system of the body.

You have the connective tissue, you have somatosensory nerves, and you have. Elements of the immune system with the mast cells as the resonant defense. And if you get an exposure that your body thinks it's dangerous, it will respond. And unfortunately, this defense and understand the biggest burden of disease outside of industrialized nations are parasites.

And so the default pathway when you don't detect a bacteria or a virus, has been co-opted from the defense against parasites to responding to these triggers like forever, chemicals, microplastics. the fact that we spend the average American of what spends like 90% of their time inside of something manufactured.[00:11:00] 

how we live, how we, what we drink, what we wear, how we sleep, how we spend our time. Has been completely changed in less than 30 years and that has completely confused our defenses that have been operating in our ancestors for millennia upon millennia. So I would've to say the timing of it is we started seeing a huge rise after the AIDS epidemic came under control to food allergies, rhinitis, asthma, eczema, irritable bowel syndrome.

Right? Which is basically meaning the gastroenterologists don't see any inflammation. No, they don't see any inflammation. 'cause it's all happening in the borders. And until we get better testing, I think we need to lend a hand to elaborating this triad of the epithelial border, the nervous system, [00:12:00] and the immune system with mast cells being front in this.

They talk to each other all the time. And if the danger signals aren't there, the body can stand down. And so you're less susceptible to be reacting to harmless substances. But if that danger signal's always there, you know, think about a police officer who is, you know, been in a firefight after firefight, and then he hears a little, what do you think he's gonna do?

Or she, sorry, don't wanna, they're gonna unload, you know, shoot first, ask questions later. And so I think what we have seen is this raising the alarm, which then increases the susceptibility for mast cells to be recruited for allergic and, host of non-allergic triggers that causes this chronic subacute compromise of the border.

And that border allows stuff to [00:13:00] get in. Now shouldn't be there. Now's in the interacting with the nerves and the mast cells. So you have this, if you want it, for lack of a better word, chronic leakage of the skin, of the respiratory tract and the gut. And if that stuff gets in those thi this is respond, danger, respond, and then sort it out later, and which makes sense.

When we were living like in small villages near the, you know, and I would've to say, just to pivot why I think individuals who have hypermobility, it's almost a, two-edged sword. Like if you ask individuals that are hypermobile, how's your sense of smell? How's your sense of taste? How's your sense of hearing?

They're the ones who can smell gas like a mile away, which serves you well if you're in a village, right? And you hear this. You're the one who's [00:14:00] gonna be the early warning signal, like something's coming, pay attention, look around. But I think we are so overstimulated with physical stuff, chemical stuff, sound stuff.

That alarm never stands down. And that had led to the co-opt of a defense that was really important when we weren't so surrounded by so many industrialized aspects of our daily living. So that's, it's a long explanation to say that how we try to deal with our environment on a moment to moment basis when the environment was completely changed in 30 years, has led to a rise in hypersensitivity disorders.

And I would say that the individual, which includes the release of chemicals from the mast cells that have the ability to modify the integrity of the connective tissue. 

Dr. Linda Bluestein: I was gonna ask. thank you so much for that excellent explanation. And boy, does that make a lot of sense to me, and I have to add in a little [00:15:00] story here about when I was probably around eight years old, which is really kind of funny because that was before I knew that I wanted to be a doctor, whatever.

But I told my mother, I know that kept getting repeated back to me. You and I will never get like this, you know, big cancer that we didn't know about for years and years. Because I knew even from that young age that I was very aware of what was going on in my body. And I knew that my mom and I were alike and my dad was different.

So it was kind of funny that you're saying like, we're the ones that we're the canaries in the coal mine. Right? I've known that since I was a child. You know, that, I was like that. So when it comes to connective tissue disorders like hypermobile EDS and HSD, are you saying that, or through this hypothesis, do we think that there's a certain number or, certain proportion of this population that has these conditions as, you know, completely inherited, you know, you know, properties through this change in the environment?

Maybe some people, maybe there is a genetic component that predisposes us, or, you know, 'cause generally we think of [00:16:00] hypermobile EDS falling into the hereditary disorders of connective tissue. How, does that work? 

Dr. Anne Maitland: So I look at how connected tissue can go awry. Is either you have intrinsic defects in the collagen or extracellular matrix, right?

Or you have defects in the components of the immune system that have the ability to modify the connective tissue. So I would have to say, and I would argue that hypermobile a down syndrome and hypermobile ED spectrum disorder is an acquired connective tissue because I think the genetic mutations are actually in the immune system that has the ability to react to the environment and it can start in utero, which has been shown by several, experiments, right?

Where if you look at, for instance, children [00:17:00] born in Harlem, and if they are live within a block of the bus depot, right? Those children are much more likely. To have intrinsic asthma, not allergic asthma. They'll start off with intrinsic asthma, which will then cultivate into allergic asthma. But if you go five blocks away, they're less likely to develop intrinsic asthma.

So, and there's all, and here's the thing. Everybody thinks about mast cells coming from the bone marrow. No. They actually come out of the embr sac and they march along as the embryo is dividing as the NAS cells and the nerves are talking within the connective tissue to modify the connective tissue. So I would've to say, you have, and, think about the fact that we warn women, there's certain exposures that you should not, you know, put yourself at risk for if you're pregnant, because those exposures can affect the development of the baby.[00:18:00] 

That also includes food, and that includes infections. That includes chemical exposures. So think about DES. Was used for, you know, individuals that were having a horrible morning sickness, or actually from one of some of them was morning, day, and night. But anyway, the point is I think it's important to understand that in order to maintain your metabolism, you have to maintain this homeostasis of bringing in what you need and excluding may, what may be dangerous or potentially what I would call frenemies, like these are squatters who are waiting for an opportunity to get in and cause problems.

So you have to have an int attack barrier. But that barrier is under attack from things that you drink, that you apply to your skin, to a climate that allows you, I mean, think about all the individuals that develop highs from cold or [00:19:00] water or sunlight or vibration. Which will cause them, and by the way, some of these individuals that have chronic urticaria, which is now called chronic inducible urticaria, meaning it's the nerves that are telling the mast cells to go off, then they have now shown that if you have chronic urticaria, you're an increased risk for developing autoimmune and, hypersensitivity disorders, and you have a higher risk of comorbidities for diabetes.

Neuropsychiatric issues, hands down. And actually, I would've to say autoimmune mast cell disease is more common than any of the top five autoimmune diseases that we have. 

Dr. Dacre Knight: And, so you would say so, and I'm just getting this summarized in, my mind too because said, and I've gone through your paper, Dr.

Belen is excellent, and, I, [00:20:00] understand what you're saying as well. And, all of this is what you described then as the epithelial barrier hypothesis, right? Is that there's a epithelial insult, right? That is picked up and is kind of, it's manipulated through the body and then we see all these reactions.

Is that a fair summary? 

Dr. Anne Maitland: Yeah. I would've to say like, one of the earliest papers that I saw regarding the risk of developing peanut allergies in children was out of Europe. You know, the biggest risk factor was mothers that were using cold pressed peanut oil to moisturize their baby skin. 

Dr. Dacre Knight: Mm-hmm. Wow.

Dr. Anne Maitland: Right? And so literally, and we know that sensitization can go through the skin. Everybody thinks it goes through the gut. I'm like, no, it actually starts earlier than that. And so, and because it goes unrecognized and unchecked, the more you keep on ringing that danger signal, the more the mast cells are gonna call and help.

and especially the help that they [00:21:00] typically call in, unless there are other signals that they're getting, are gonna be eosinophils. So if you think about some of the disorders that we see, for instance, university of Cincinnati Children's Hospital showed that children that were hypermobile or had a connective tissue disease, whether you're talking Ehlers-Danlos Syndrome or Marfan, were three times as likely to develop eosinophilic esophagitis.

And that was an opposite of 15 years ago. 

Dr. Dacre Knight: And that, so that's also to keep in mind, like you just said, yes, certainly gut, but really any epithelial layer scan or otherwise can be a point of concern. Right, exactly. As like you mentioned, like the peanut oil, right? So, and, we, that's just adding to the surface area of, that could be a risk.

So, and one thing too, I'll, I, know you and I have had these discussions, but I'll also just bring in another as you describe it. You know, our human [00:22:00] species has been evolving over the past, what we say, 300,000 years or so, and there has been so much that has changed in such a recent, just a minor fraction of that whole span of time.

And if we think about plastics, right, that these were not around, beyond the middle half of the 20th century. Right. so I mean, that's just, it was just a shard, but we get a, lot more understanding about microplastics and things like that. And, I would presume you think that kind of folds into this as well, right?

The concern of microplastics and so forth. 

Dr. Anne Maitland: Well, first of all, the one example I always use is the graduate, right? Where, you know, the next door nerve is like, you know, the feature is plastics and I st and I still remember that commercial. In the early 1980s where they said plastic was the future. I'm like, what does that mean?

and I have to tell you that some individuals are so sensitive, especially the hypermobile people, like they have to have special IB [00:23:00] tubing. Because if you, and, I'll give you an example. I had a woman who spent two years doing IVF to get pregnant. And she had twins, right?

She was having twins and she was iron deficient. So the hematologist was giving her iron and, every time she had, she got one dose. One time she was just itchy. He gave her Benadryl. He's like, okay, I'll just pre premedicate you with Benadryl. The next time Premedicate with Benadryl, she got itchy and started to whe he is like, okay, I'm done.

I'm going to go see Maitland. You know what he did though? He sent over the IV tubing. He sent over the. Alcohol prep and he sent over the ion preparation and everybody thinks iron can do it. But what's really interesting and what people don't know is that D-D-H-E-P and PVC is typically found in the cheaper IV tubing and they will not allow that IV [00:24:00] tubing in PICU and NICUs because they show that and nobody tells us 'cause it's much more expensive.

But the fat tubing will interfere with the development of the urinary tract of premium males. So all I did was I went over to the NICU when I was at Mount Sinai, I'm like, Hey, can I get some tubing? And then brought it back and gave her IV fluids with a slow IV push. And this is why we make recommendations for anybody who has hypersensitivity issues.

Be careful with the tubing. Don't push. If you push, you'll elu off that chemical right into the vasculature, which will be considered an injury by the connective tissue. And then you'll end up with an infusion reaction, which is really a nerve mediated vascular mass cell response. So, so, and if you think about what kind of IV tubing was [00:25:00] available before the cheap plastic stuff, that was stuff that got autoclave, right?

Because my dad, was a surgeon and I was like, what's that little, what's that little device you have over there? He would autoclave everything and everything was in glass. Syringes were glass, you know, everything was glass. Petri glass, Petri dishes were glass. Everything was glass. And the conversion over to plastic only happened like I would say the late.

Eighties, early nineties when the HIV epidemic was taking off and nobody was, everybody was worried about, you know, are we art enough to kill whatever was in that tubing? And so now we've started to move over to plastic and just think about the fact that there's certain individuals that can't drink water out of plastic bottles.

They had to remove BPA. Why do they have to remove BPA? So we were, in order to have these more inexpensive, [00:26:00] more abundant goods, whether we're talking clothing, whether we're talking hardwood engine, engineered hardwood in our homes, or we're talking our food, there have been things that have been added in order to make them more abundantly.

Make them more cheaply. But literally, our, exposures like, and I'll tell you, there've been three lawsuits that I think will be really important to illustrate how what we wear. Time we spend indoors, and the air we breathe. So we already talked about the babies being born near a bus depot or you know, a farm where they're fertilizing, you know, doing air fertilizing.

because understand the unmet need for rhinitis, asthma, food allergies isn't, is a urban issue, but it's also a rural issue Right. Because of, dumping, you know, [00:27:00] and so, so, so, so 

Dr. Dacre Knight: spreading and spraying. Yeah. 

Dr. Anne Maitland: Right. Take Louw Liquidators. Right. They had a huge lawsuit because they imported engineered hardwood from China.

That was Offgassing formaldehyde that was installed in numerous homes. Oh, wow. And they had Wow. So, and so they were, it was discovered that the homes were issues. They had tens of millions of dollars of payouts. All of a sudden lumber liquidators became LLC and LLC just filed for bankruptcy.

Right? That's one. Number two, Delta Airlines, you know, and, they're celebrating a hundred years. So I look at these commercials, I'm like, yeah, that, that outfit back in the eighties, that was kind of purple. Didn't y'all have a lawsuit? So the way they made those uniforms actually caused people to develop rashes.

And so they had to pull the clothing line because of how the clothes and Dr. Ian, you have [00:28:00] to admit, and, Dr. Knight, you have to admit, you have some patients that can't get into new cars, they can't go into new homes. Oh yeah. 'cause they're offgassing. 

Dr. Linda Bluestein: Oh yeah. 

Dr. Anne Maitland: And what do you think is detecting that Offgassing, that's not the mast cells.

That's the epithelial barrier and the somatosensory nerve. 

Dr. Linda Bluestein: Yeah. Oh, that, that's so fascinating for a coup for a couple points. One, I have a family member that was just recently in the hospital. And received multiple antibiotics, through, you know, slow IV push. And as an anesthesiologist, I know that slow IV push doesn't always mean that slow people wanna get onto their next task.

Right? and they felt very ill every time something was. And this is somebody who has kind of known mast cell or likely mast cell problem. so that's so interesting because I knew that the tubing, you know, could be problematic, but they were in a hospital setting, so hopefully they had at least somewhat better quality tubing.

'cause I worry about these infusion centers. Yeah. I'm gonna get to that [00:29:00] 'cause that this is so important and I worry about infusion centers that are of course probably gonna buy, you know, the list. Expensive things. So the million dollar question, what do people ask for? What do people request?

Dr. Anne Maitland: Unfortunately we got the rich door and the poor door, right? So I, think you can request for that type of tubing if you're paying for it out of pocket. But, and in the hospital, I can tell you I still have patients that have reactions. And so there are some tricks I've learned along the way.

Like I will coat the syringe and I'll coat the tubing with a little bit of Benadryl before I do, just to kind of stabilize, get that Benadryl in beforehand. And again, I tell the liquid, 

Dr. Dacre Knight: like liquid Benadryl. 

Dr. Anne Maitland: Yeah, put it in a bag and run it first, right? And then same thing with Lamoine, because the H two receptors are on, are all on the vasculature, right?

Put it in the bag, run it slow, and then [00:30:00] run it, then run every, whatever you're gonna do. But one receptor that, that is getting more attention from allergy immunology is called the MRG P XR two. And this is the receptor that's responsible for Redman syndrome from Vancomycin, and it has the ability to detect anesthetic agents.

It has the ability to detect antibiotics like fluoroquinolones, which is why we tell people, and I don't know I wanna date myself, but Dr. Bluestein and Dr. Knight, you might wanna chime in on a fluoroquinolone that was pulled off the market, I would say in the early two thousands. And that was Trovafloxacin, which was used for a lot of gastrointestinal infections.

It was great for killing those GI bugs, but it was also great for killing the liver. And so that's why it got pulled out of the market. And this is also why we tell people, if you're gonna, if you have a urinary tract infection or respiratory infection, you might not wanna exercise [00:31:00] when you're on like any of these fluoro equivalents.

You gotta be careful about that. And then, and this is also why we tell a lot of the patients that already have joint laxity that can be influenced by mast cells inappropriately releasing these chemicals, right? And. By the way, I just wanna point out everybody really treats again mast cells as one trip pony in the 19.

You know, they were identified in the 1860s in frogs. Last time I checked, I've not seen a peanut cause anaphylaxis in frog and they didn't get a job. They didn't get a job until 8 19 89. So a hundred years after they were identified in every part of the human body. They got a job when we started seeing a rise in allergen trid mast cell disease.

So 1989 to 2000, we [00:32:00] started seeing a huge rise in people having reactions and allergy testing didn't explain it. Systemic mastocytosis, which is a clonal mast cell disease to explain. So that's where the term mast activation syndrome comes in because we know you're reacting, but it ain't due to allergies and it's not due to you having this clonal mast cell disease.

So we're gonna just say your mast cells are twitchy, right? And focusing on mast cell degranulation or secretion of certain chemicals that cause hypersensitivity reactions, because mast cells kick out a lot of chemicals. So checking a heparin to see whether or not you're having a hypersensitivity reaction doesn't make any sense to me.

Right? Because that can be released because mast cells participate in tissue remodeling. So I think we need to separate out the fact that this is a multifunctional cell that reduces, produces a lot of chemicals, including enzymes that can modify the connective tissue. [00:33:00] and so I think if we start thinking about mast cells being twitchy now, the next question is why are they twitchy?

And are you sure you're not missing something else that looks like twitchy mast cells? And so, we put a paper out in 2022 showing I did a retrospective study with over 980 patients coming through saying I have mass activation. And so I had to get a glass of water, look out the window, take a deep breath, and get back to their story.

And interestingly enough, out of those 980 people, one out of five had evidence of Mast Cell Activation Disease because tryptase isn't released in every type of hypersensitivity mast cell triggered event. They had evidence of hypermobility. And interestingly enough, they had evidence of antibody deficiency.

so they had evidence of hypermobility [00:34:00] and hypersensitivity due to secondary Mast Cell Activation Disease, meaning the mast cells did not have enough antibodies to recognize that bacteria or that virus. And because it was less efficient and recognizing that pathogen is kind of like a police officer showing up to a fire, lovely, that you're here, but do you know how to put out that fire?

Right? And so, and you know, the police officer being a good servant to the community is gonna do their best, but they can potentially make the situation worse. This is what mast cells do. It has to be Goldilocks. You want them doing the, that type of a activity to contain a danger. But if it keeps on thinking.

Cold temperature or a certain wave of sunlight or perfume that you walked into a store with is a danger. Now you're releasing these chemicals that can kill, that can change blood flow [00:35:00] inappropriately. And guess what? Without a pathogen here to absorb all that, all those wonderful juicy chew up chemicals, it is the connective tissue that takes the hip.

Dr. Linda Bluestein: Wow. Th This is such fabulous information. We're gonna need to take a quick break. When we come back, we're gonna talk about. Some of the specifics, I think regarding diagnosis, differential diagnosis. 'cause people, you know, we have the ICD 10, right? So when as clinicians that are listening are gonna be like, well, what do I, when I'm working somebody up, what do I do?

what test should I order? what is the diagnosis I should be thinking of or the differential diagnosis? But also, I know people are gonna be wanting to know what do we do about this? What are the treatment options? So we're gonna take a quick break and when we come back, we are going to be talking more with Dr.

Maitland about, this such important topic. We'll be right back.

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Dr. Dacre Knight: And we're back with Dr. Ann Maitland, who's been enlightening us in all things related to mast cell. And just to get right into it, 'cause I know we've got a lot, still a lot of area to cover that we cover so much. [00:37:00] I have this experience and I'm sure Dr. Bluestein does as well. I mean, I'm sure you've seen it in so much and, been asked about it, Dr.

Madelin, that, you know, a patient would describe some various symptoms, what may be thought of as allergies or some hypersensitivity, and then they report that they'd been to the allergist. Their testing was normal, right? So, allergy testing is normal, looks great, but just to make sure that we validate patients and we don't miss patients that would otherwise fit in certain models of assessment.

What things do you look for? Would you tell others to look for that, trigger ideas about mast cells and give some, you know, direction to treat. 

Dr. Anne Maitland: So, I, think if you're gonna use the lens of immune nerve. Immune disruption. You wanna fo and more specifically, if you wanna use the proposed criteria and understand we, we still need more help with the criteria.

But I've been using the same criteria and there's four things. [00:38:00] Do you have evidence of multiorgan system involvement knowing that the top three manifestations of individuals having mast cell activation syndrome is the skin, the gut, and neuropsychiatric. Right. Secondly, but it can happen in any organ system.

For instance, interstitial cystitis or bladder pain syndrome in the United Kingdom, they diagnose this by doing a biopsy of the bladder staining for mast cells. 'cause if you don't stain from mast cells, you won't see them. And the bladder wall is chock full mast cells. That's how they secure the diagnosis.

Right. And so I remember before I said that chronic urticaria. Spontaneous urticaria and, and in urticaria, we know one out five Americans has this for more than six weeks, so not small, right? So we know the skin is taking a hit. So if you have somebody who is flushing, itching, tating, [00:39:00] you know, sorry, breaking out in hives or swelling, that's one system, right?

And you only need two systems to go to the next criteria. Are you having irregular heartbeats? I had a patient who she was eating, you know, one of these cereals that had almond flour in it, and she actually didn't know that she had almond allergy. So she was actually having low grade anaphylaxis every time she had breakfast, right?

So, and so anaphylaxis, the way we define it, decides, you know, you know, pornography, you know it when you see it because that's exactly how anaphylaxis is treated. so if you have skin. Neuropsychiatric, you know, labile brain fog, or mood disorders. They need to be counted. Okay? And so I have a standardized questionnaire of classic immediate mast cell triggered events that impact the skin, the gut, the brain, the central nervous system, the urinary [00:40:00] tract, and the joints, right?

I count. I count 'em. All right? Give the patient benefit the doubt who has had on average six to 20 years of symptoms, right? Then do you get better with medications? Not cured, but do you have some improvement that goes after some of the mediators that cause these hypersensitivity events? Right? And by the way, I can check a tryptase all day long for food induced anaphylaxis, and it's never elevated.

So we have to look at other ways. But the other ways are methyl histamine and the prostaglandin metabolites. And guess what? They're also made by basophils and neutrophils. So is this a mast cell problem? Right. And then, but I would say the gold standard to identify whether these tissue resonant immune cells are problematic is to take a look at them in the tissue.

And you have the gut because everybody gets, you know, [00:41:00] scoped and staying from mast cells because again, if you don't look for them, you won't see them. So I have a hematology oncology colleague who, and I, take, I tip my hat off to him because he asks to go back and look at endoscopies and colonoscopies and see if mast cells are misbehaving.

But we don't have enough data to say like, eosinophilic disease, if you had these many mast cells, is this Mast Cell Activation Disease or not? So, so I, so I'm kind of leaning into knowing the risk of all these hypersensitivity disorders, if. If you get better with diphenhydramine or loratadine or famotidine or leukotriene, or you get on Omalizumab or Xolair for, your urticaria or your asthma or six month olds that have food allergy, right, or Dupixent, that's indicating that your mast cells may be contributing.

So you have a strong data that your [00:42:00] mast cells are misbehaving, and generally speaking, mast cells will not stand down. They're better than the agent in 24. So just putting them and rotating antihistamines and parking people on a diagnosis of MCAS is a disservice in my opinion. I think you need to figure out why your mast cells are misbehaving and it breaks down to two things.

You got broken mast cells, something's going on within the gene structure of the mast cells themselves. So systemic mastocytosis, monoclonal, mast cell activation syndrome are rare. There's less than 35,000 cases in the us What's not so rare is hyperemia, which is, it's the equivalent is thinking about a police officer.

Instead of walking around with a six shooter, he's walking around with an AR 15, right? So when the mast cell degranulates, it's like, right. But interestingly, and that is an [00:43:00] autosomal dominant, inherited mast cell problem that affects at least 6% of the Caucasian population. So when this was reported in 2016, just when we came around with the new criteria for EDS, what was fascinating is that although it's all of a sudden with dominant inherited, it wasn't full penetration for all those that inherited that, those increased copy numbers, which is telling me you gotta, the mast cells have to be triggered to release.

So, and I have to tell you, I've seen it, I've taken care of identical twins who had, and fraternal twins who have had hat and one was horribly unwell and the one and one was okay. Right? So you've gotten the story, you've gotten the ability to see, they respond to medications that keep the mast cells quiet.

and you got lab data that suggests it. Now you wanna figure out are you have broken mast cells, and I would have to say the [00:44:00] majority of patients that I see, it's not broken mast cells. It's mast cells breaking bad. You have positive allergy tests, you have antibodies against the mast cells, which is chronic spontaneous urticaria, which is prevalent in the us right?

you have people who have undiagnosed immunodeficiency disorders, again, using the analogy of a fire to please show up because the fire trucks haven't come. Right. That's the issue with immunodeficiency. You are waiting for help and it ain't coming, and that's what immunodeficiency is. you have an undiagnosed complement disorder, and this is where I'm gonna pivot very quickly to infectious agents.

So the pathogen that causes Lyme disease, there's a great story coming out of MIT with in from the towel lab that shows that Borrelia, which causes Lyme disease, spends one [00:45:00] fifth the genome avoiding the complement system. So if you have an undiagnosed complement disorder, guess what you're gonna get? You see that bug?

You don't know how to fight it because it's figured out how to get around your systems. And so that's why we're seeing the question is why are we seeing a spectrum of disease from this one pathogen? And that's no different than COVID. Why are we seeing a spectrum of disease? Because it's a dance. It's the pathogen and what you're bringing to that party, right?

And not everybody's bringing the same tools, right? So misbehaving mast cells by two or more organ systems. You get better with tricyclic agents, biologics that target mast cells, antihistamines, leu, tri antagonists, mast cell stabilizers such as keto OFin or chromin. And I have to tell you, it's hit and miss with these medications because guess what?

Mast cells can cause [00:46:00] hypersensitivity disorders without degranulation. So that's why clin might not work, and that's why keto might not work, right? And it has different activity in different organ systems. And then the second set of tests is really why are your mast cells misbehaving? And so I will do a screen for if you haven't had allergy testing, which is unusual, I will repeat it.

Through the blood. And I also see where your total IG level is. I'll see what protection you have against things. I hope you were vaccinated against like strep and pertussis. Right. And we're picking up thanks to South Carolina's epidemic of measles. I'm picking up people who've been vaccinated against measles and don't have any protection against it.

So there are people who are running around with immunodeficiency disorders that don't know it. And then the thing I learned back in 2011 is when I find somebody who's bendy and tall that hypermobility travels with hypersensitivity. [00:47:00] And why is because we know that people are bendy. What do they have?

They have propriocept deficits, which means that somato century network that's supposed to be keeping the mast cells quiet with CGRP or glutamate or substance P right. are triggering those mass ups because proprioception is saying, you know what, I don't like where you're in space right now. I close my eyes, my feet are up and I can't settle down.

So we have a lot of people who have restless sleep 'cause that proprioception is not telling them and they're in a safe space. Right. Or I'll hear, you know, I was a dancer then I twisted my ankle and I was like a house of cars. I could never go back to dance or I can swim like a fish, but I can't run on land.

Like these are all clues that something's going on with how your body's perceiving where you are. Your GPS is a little bit off. So I will screen for immune [00:48:00] dysregulation. I will screen for proprioceptive issues and I will screen just with a questionnaire borrowing from the French who've been doing this for 25 years.

They have a nine question questionnaire that if you answer five of those questions. As a positive, you have greater than a 97% chance of having an LS danal variant. 

Dr. Dacre Knight: Wow. Well, I think that's all to say that there's a lot more going on to just answer my question very thoroughly. There's a lot more going on that, just allergy versus non allergy.

if you're told that you don't have an allergy, then much more to think about as you just illustrated for us. So, thank you so much. 

Dr. Linda Bluestein: And I wanna make sure that we get these resources because, I can anticipate the emails coming. You know, I wa I wanna see that, those questionnaires that you mentioned, so if you're able to share any of that with us, we can either link it in the show notes and or share those as resources on the website [00:49:00] because this is so important.

You know, you're talking about. Workups that people can do. And if they are working, if, it's either a clinician listening or they're working with a clinician that's open-minded and willing to do these things, fantastic. But then I wanna also move on to also talking about treatment, because there's gonna be people listening to this who are like, I don't have somebody to help me work this up, but I, maybe they can do some things on their own.

Like you were talking about, you know, avoiding microplastics or, you know, some swaps in their foods that they're consuming, various different, you know, over the counter medications, for example, maybe some supplements or things like that. So, can you give us some ideas of next steps that patients can take?

Dr. Anne Maitland: So I definitely do avoidance measures. I tell patients, be careful about, I, I'll say cotton is a safe thing for you, right? Including underwear, right? I would also say stick with hypoallergenic, you know, cevy or [00:50:00] Vanna Cream. Products because they don't have all those fragrances and additives that allow it to sit on the shelf, stay away from processed foods, because those, additives and emulsifiers are direct hits to your gastrointestinal lining.

Right? Try to get outside and walk. Don't rely on your car. Like just try to walk and maintain your conditioning. And so, and I have to tell you, I've seen individuals who have cervical spine instability and they get the surgery, which restores the vagus and adrenergic balance, and their hypersensitivity reactions start to ease off.

So this is where working with a occupational, physical, or speech therapist who's knowledgeable about your hypermobility and tissue fragility, so they won't have you. Like I had a patient last summer. Who, she's [00:51:00] 17. She likes to ride horses. She fell off a horse. She keeps on complaining that every time she lifts her hands this way, she has a lot of pain in her hands.

I'm like, you can't go back to horseback riding and you can't do volleyball until that gets evaluated. Gets evaluated, by a physical medicine person who didn't appreciate that we had an upright MRI so, and sent her for swimming, which was safe. But the swimming PT didn't know that she was hypermobile and had to do stuff on land first, including a plank, which caused her to have more pain.

So I think it's really important that you go to people that are EDS savvy if you're gonna do physical therapy, because conditioning goes a long way. We have women who have increased susceptibility to having bad menses, [00:52:00] have really bad mood disorders around their cycle. There's something to be said about exercise and getting that estrogen more balanced because that nerves and mast cells look for change.

And if that change is happening every 28 days, they're gonna go off every 28 days. So using medications to kind of keep things quiet, like being a little heavy handed when you know your SI cycle is coming with an H one and H two blocker goes a long way. I believe, I forget who the authors were, but they came out of Minnesota that talked about the role of like vaginal suppositories that have either Benadryl or Chromin in it.

And by the way, the beautiful thing about Chromin, it is hit or miss, but if it works for you, I find it works really well on the skin, even if it doesn't work on the gut. There are eye drops, there's no drops in addition to the ones, and there's a preparation for the lungs as well. [00:53:00] and then you have doing physical therapy in the water because that's just better information proprioceptive wise.

But, and you wanna stay conditioned. And also, I'd be really careful about limiting your diet. I, years I've been doing this, I've never recommended a histamine free diet. I don't know what that means, right? Like I've had chronic inducible urticaria for 25 years. I eat strawberries, I eat all this stuff. I don't have a problem.

Right? So, so I, would have to say I do, I follow the diet that's typically recommended for people that have eosinophilic gastrointestinal disease as a guidance. Just do it for a couple of weeks. See if you see an improvement. S because I don't want you becoming nutritionally compromised. I cannot tell you how many people come through and their vitamin C level by blood is undetectable.

Like they've been on a pirate trip for the past six months, [00:54:00] B one and B two is down. Right? and I also tell them what their cookware please stay away from. Those non-stick pants you steal are ironing, you know, stick with glass as much as possible for storage of your foods or drinking, vessels as well.

So their way, and then again, clothing, what you eat and, restoring that sleep wake cycle is really important. Get that brain to calm down. Right? And if it can't, you need to figure out why. 

Dr. Linda Bluestein: Wow, there's so many. Okay, so I made several notes here that I wanted to follow up on. First of all, cotton underwear, not to be TMI, but yes.

Changed my life. 

Dr. Anne Maitland: That's good. That's for boys and the girls. It's boys and the girls. 

Dr. Linda Bluestein: Yeah. Yeah. Oh yeah. Oh yeah. I mean, it is shocking to me and that is why this [00:55:00] podcast is so important to me because there are. Little things that we can do that can be hugely impactful. And so I'm so glad that you shared that.

and I have a patient, I've had a couple of patients actually who thought they were going to have, you know, cervical fusion, cranial, cervical fusion, and they were able to avoid the surgery because we got their, mast cells and their immune system and their epithelial barrier. All, of that under better control through these modifications that you're talking about.

And their instability improved dramatically enough that they did not need the surgery. So, I'm a fan of everything that you just said. I use caramel and eye drops myself. I, so I think this is all fantastic. What about when you're talking about cookware, what about like ceramic cookware? Are you familiar with that?

Because I've, I read that was supposed to be okay. That's what I replaced mine with. 

Dr. Anne Maitland: Definitely agree with you Ceramic. I, what I like about the iron skillets, throw some peppers in there if you tolerate it. That's a good way to get iron and [00:56:00] vitamin C in you. Right? I just think avoiding things that can elute into your food stuffs and beverages is really important.

and those non-stick pans, I don't know what the chemicals they're using to prevent your food from sticking, but it's getting into your food. Just so I would definitely recommend, you know, in many ways I, would've to say the, child that taught me that I was a miseducated allergy immunology specialist, although I suspected it for years, was a 4-year-old who had seen over 40 practitioners and one 10th of them, no, 10 of them were allergy immunology specialists who tested him for allergies for his anaphylaxis, his asthma, his regression for neurocognitive milestones.

and I just listened to the story. And apparently he came out [00:57:00] rash. He was hiding when he came out, right? And, the pediatrician did the first thing. He's like, I don't know what you have. So a lot of people, if you only have 15 minutes to talk to a patient, slow your roll before you throw them onto a diagnosis, he says, I don't know what you have.

I want you to try some simple things. I want you to keep breastfeeding. Just stay away from that processed cow's milk. You know, try to keep your diet straightforward. I want you to just use cotton, avoid those indoor play parks. 'cause they're just festering with heaven knows what. And he got better for a year.

He was running, he was playing no joint pain, no anaphylaxis, no asthma. That pediatrician retired, pediatrician who just graduated from residency said, why isn't your child on milk? And so here's where. Someone who does not have the [00:58:00] life experience of a seasoned practitioner will cause you to slide right back into a bad hole within two days.

He was hiv, he was having asthma, he's having reactions to foods. 'cause he said, you know, she wanted started putting milk into his diet. He went up and down I 95 to all the, you know, the named pediatric hospitals and their specialists, including gastroenterology, psychiatry, because, you know, moms start taking their kids to a lot of doctors.

Up comes that medical child abuse concern, nutrition, dermatology, pulmonology. They all said allergy except for the 10 allergists. Like, no, your IG is less than 10. And every test we looked at is negative. So he was in my office when I was in private practice in Tarrytown. He is sitting on the floor in a W and I'm internal medicine trained.

And I don't know why I [00:59:00] remember this, but I'm like, I don't think a 4-year-old should be sitting on the floor in W And then I looked at mom and I'm like, you kind of long and lanky. Do you have? And she's like, no, I think I have ERs, Danlos. And that's when I realized, you know, I had one board question on Aler Danlos and like, and I literally said, you're not gonna blow a blood vessel in front of me, are you?

And she's like, no, I think I have the classic. 'cause we weren't up there with that terminology. Yeah. And I'm like, don't know anything about that. Hold on. And I had no, I have no problems taking out my phone. I'm like, can I just look? And and I basically said, okay, you know what? I only know two cells that can do this, nerves and mast cells.

And we just started appreciating that nerve triggered mast cell urticaria was coming out with cold vibration. And pressure. So I said, let's keep it simple. And again, [01:00:00] cotton, I want, if you're still breastfeeding, keep breastfeeding. But take milk out, take out the, big six. I want you to start using chromin and I want you to start using it in cream first.

He did great. He went from six foods to a hundred, six to eight foods within a year. No anaphylaxis, no asthma, no rhinitis was just using, he had a rescue inhaler when needed. He was using chromelin eyedrops and actually chromelin nebulizer for, the practitioners. People focused so much on the a hundred milligrams for five mls, the 20 milligrams, but for two MLS is still out there.

Right? And as a nebulizer, that's great because guess what? It doesn't get absorbed. It's great for physical triggered asthma. You can actually take a couple of those vials, throw it into cream so you don't have to be reliant on nasal chrome. Right. And so you can [01:01:00] keep your airways and if the child is using a mask, you get in the nose and the lungs and the skin quiet.

So you have two major barriers that have a little extra protection against this incoming toxic environment. And so that was my aha moment on, you know, wow, I've been taught if people have multi-organ system is allergy or not allergy and not allergy was like this huge non-existent bucket. And that's when I got into identifying and I actually presented, abstract to our national, one of our national organizations with a family of 10, sorry, two families and then two other individuals.

All their IG levels were less than 10. Their chitta was less than three. And I'm like, mast cells are misbehaving. By the way, they get better when I use antihistamines and Cronin and they're bendy. So and so that, so the past president of this organization's, like, are you telling me I need to bend [01:02:00] people to see whether or not they have a mast cell problem?

I'm like, yep. So, and that's what, that's why I kind of fell into EDS. 

Dr. Dacre Knight: Well, and you actually took a lot of the questions. I came into this Think you some questions already. You got them. You nailed them. So thank you for putting all those things together in treatment and, I know we're about at our time, but I'm like reflecting back from our conversation from the beginning, we're talking about epithelial barriers and things like that.

And, I see, and what we've done with modern technology and foods and drugs and everything that we've made great advances, right? There's great medical miracles that we've come upon, but also at the same time, it's almost like we've created some diseases of its, own right. Of just, of this development and, Progress as we call it. But, I, and I guess the goal is that we don't want to, with our developments in technology and commercialization, we don't want to continue creating more diseases that, you know, just is [01:03:00] more of a burden. We want to actually make progress. And I have referred in some other conversations to about Dr.

William Mayo's, adage that the, aim of medicine is to prevent disease, or the ideal of medicine is to no longer need physicians. But I foresee, and you may agree with me, I foresee that the way things go, that we're probably going to need allergist immunologists for a long time to come yet. And, you know, maybe it's unfortunate or, but thinking about the message to patients and, you know, thinking about what we've been discussing, and I kind of counsel patients on this because certainly there's a lot of things to be aware of, to be careful for triggers and so forth.

My, actually, my question was, it, do you think it's a trigger that they're exposed to? Is that kind of a sequence of triggers? Also, how do you kind of counsel patients to also live functionally so they're not like in a bubble, right? So we're not like, we can enjoy our lives and not just try to [01:04:00] isolate ourselves so much.

Right. And it's a balance, I presume, and, you've probably refined that over many years. So if I could get one last question in for you that, that's it. how do you balk that line? 

Dr. Anne Maitland: So, the last time I checked, tolerance never comes from avoidance. So it starts with a medical home, which a lot of these patients don't have access to for lots of different reasons.

I would've to say, for instance, where you've practiced both places where I've practiced except for one, had in-house allergy immunology exposures. The residents saw it, the, you know, medical students saw it, but in this country overall, there's only one allergy immunology specialist for 60,000 residents.

So, so there's very [01:05:00] little exposure. in the medical school, there's definitely less exposure unless you do a rotation. Right. So a lot of people, again, you don't see, you don't know it. And I think it's important to find a practitioner and I, and if anybody knows me, they know I don't particularly care for the term provider.

I'm like, I've been studying too long to be called a provider. you need that patient practitioner partnership. Right. Different, three Ps. Right. And it has be, you can't 

Dr. Dacre Knight: just leave someone off on their own. Right, right. 

Dr. Anne Maitland: and I think it shouldn't be. You don't have this, so I can't help you anymore, which is not true.

So that old adage of if you can't measure it, you can't help, it is malarkey. I think if you can't measure it means you have more questions to try to pursue the truth, which is what Francis Peabody said with the [01:06:00] Golden Age of medicine, where one of the sections he had was, what do you do about the patients that have nothing to matter with them, like completely negative tests, but multi-organ system involvement.

And unfortunately, we so lean into sickness that we're not able to see paths to wellness. So the first thing I would tell patients is you need to partner with a practitioner who can help you navigate this very rugged healthcare system, very rugged healthcare system. Like I just met a young lady who was seen by a gastroenterologist outside of the state of South Carolina.

Who actually came in with a timer on his lapel and said within 15 minutes, dang, you have Crohn's disease. Oh 

Dr. Linda Bluestein: gosh. 

Dr. Anne Maitland: Right? And so, oh my God, seriously drive through. You know, you get, you have drive [01:07:00] through gun acquisition, now you have drive through healthcare advice. so you wanna, acknowledge this disability?

I would simplify things as you try to understand why they're having these hypersensitivity reactions. You know, is this a structural issue? Is this an intrinsic immune system issue? I think the nerves get caught in the middle, right, in the patients that I see. And the next thing is starting doing empirical trials.

So I told the patients five things, you know, and I said, and I tell 'em to use it with me. For the two visits that I'm allowed to see patients, sorry, I'm working on it. does that practitioner have an idea about what's going on with you? An idea. What can I give you to make you feel better while I'm trying to figure this out, because this has been going on for more than a minute.

Whatever I give you, I need to warn you about major side effects. So that [01:08:00] can be an oxygen concentrator or a cream or just stand out in sunlight for five minutes, 

Dr. Linda Bluestein: right? 

Dr. Anne Maitland: Then what kind of testing am I gonna get to try to figure out what I think is going on? And then when are you gonna come back? Which means they're gonna be empiric trials.

But I try to weigh the risk and benefit of the trials and some of those trials. It'll be a step forward and I pray and work hard to make sure it's nothing more than a little side step as opposed to a slip back. And I think if, if. you can find somebody who's willing and able to listen to you and work with you and learn with you, that's what you're gonna need.

Because you have to admit, Dr. Bluestein, Dr. Knight, there's not enough of us in this space. Right. And until like we get taken down the middle and split, or, you know, star Trek, you know, I think it's [01:09:00] important that the patients educate themselves like they do. Listening to a podcasts like this, there's YouTube videos, there's several societies.

You have the Mast Disease Society. You had the Just Denomi project. You Denomi International. You have the Down Society. You have, you know. Dr. Knight, you're having an EDS symposium we're having at me, medical University of South Carolina. We're having a symposium and keeping those dialogues going while we develop other educational avenues beyond the ECHO programs.

Like what can we do to have group visits for patients? Because I feel in many ways I'm repeating the same stuff with each patient. So can we develop novel visits, structures that'll be helpful. That can be covered by insurance. So not everybody gets shut up just because they don't have the right insurance, or they can't get into Virginia or South Carolina.

So that's on the patient side. On the practitioner side, [01:10:00] get off your high horse. Oh, seriously. I was humbled a long time ago and I have no problems admitting I make mistakes. But I think most, and I think unfortunately, we've been trained to be scared of making mistake, but I think if you give the person your best educated advice and say, I'm not sending you out with a medication and come back in three months, again, building that medical home is really, important.

And that foundation is being challenged by lots of different things going on in our current healthcare system. And it's not just our health system. You go across the ponds, the same thing, but just for different reasons. I think we, we have to get these observations and we need to accelerate because there's a lot of information out there that needs to be cut through.

And unfortunately, the, adage from 20 years ago is the same now. A newly appreciated [01:11:00] observation takes 15 to 20 years to get into, the general biomedical community. So, you know, it's patience. But again, like not everybody can get into South Carolina, but I'll offer peer-to-peer consultations.

So if you ever practitioner is willing to learn, I'm willing to get on the phone with you. It's a small fee, but it's just because it's taking away from time that I have re regarding my responsibilities with all that I'm trying to do at MUSC and all that you're trying to do in University of Virginia and all that you're trying to do Dr.

Bluestein with echoing it out. So I would say education, to accelerate appropriate testing education based on scientific research to say, okay, what exactly ha do we have better ways to figure out mast cells or misbehaving besides taking a piece of your skin or piece taking a piece of your bone marrow or your gut.

It has to be a better way of doing that. Appreciate the fact that this [01:12:00] nerve mast cell issue causes neuropsychiatric issues like, and whether we're talking mood disorders, attention deficit disorders, which the bandaid got ripped off on that with COVID. So I mean, this app, this model, I believe applies to, chronic fatigue.

I think it applies to long COVID. I think it applies to individuals that had some type of accident, infectious or chemical exposure that just took that final Jenga. And I would have to say people who are bendy, a lot of them don't appreciate their bendy because they're like, I'm not as bendy as that person in the yoga glass.

Well, that doesn't. So, so, so I think again, it's, and getting practitioners to understand if you see somebody who's bendy, even if they're on like methotrexate for, rheumatoid arthritis, that does not mean that they're not [01:13:00] bending. So joint stiffness does not exclude joint hypermobility. So I think it's education of the practitioners education of the healthcare system.

Like if you wanna reduce the care of these patients who are going to 20 different specialists and primary care jumping, if you wanna reduce that bill, let's start doing some more tailored, targeted testing. 

Dr. Linda Bluestein: And I really do think that we could save the healthcare system a lot of money if we did pay more attention, listen to people better instead of these, you know, like you said, the five minute visit in and out and then they're gonna come back and, you know, we're never getting to the bottom of things.

So I totally agree. And I think that was, I think that was also your hack for us, right? the partnering with a healthcare practitioner for the patients, you know, to partner with a healthcare practitioner who can work with you and really help you sort this out. 'cause I, sometimes hear patients say, well, I'm not gonna go back to that doctor 'cause they didn't know how to pronounce Aler Danlos.

And it's like, that's 

Dr. Anne Maitland: not good enough. 

Dr. Linda Bluestein: Exactly. That, that, [01:14:00] that very well might not matter if they are compassionate and if they want to learn and want to help you, that's what you need. I've heard Dr. Knight say that in presentations as well, and I've been saying that to people for years. Yeah. 

Dr. Anne Maitland: I'm like, seriously?

I can't tell you. I'm like, I had to learn this. I didn't learn this at any of the places that I trained. I didn't learn any places I've trained. As a matter of fact, let's be, let's end on a happy note. So let's just say there, there's a critical mass, there's a critical mass of, healthcare practitioners and clinician scientists.

And I love the program that, that Chip Norris has at MUSC because guess what? He now has a lecture in the first year medical school class. I, he now has sponsored, he has sponsored lunches because if you just feed them, they'll come. 

Dr. Linda Bluestein: Yeah, that is true. 

Dr. Anne Maitland: and what's really interesting with my clinic, [01:15:00] I now have medical students rotating through, so I have 30 year medical students rotating through and everyone has come through saying.

I didn't know about this, I didn't know about this. And they take it to other places where they're rotating through like, and those practitioners like, well, I have EDS patients I didn't know that had an EDS center. I'm like, well, I won't say that too much because we're still dealing with a huge wait list.

but, we're trying to, we're trying to spread the word that I think a lot of people, a lot of practitioners think that there's nothing that can be done. And if I can stop a physical therapist saying, yes, you're bendy, but there's nothing that can be done. Or a rheumatologist says, yes, you're hypermobile, but there's nothing that can be done.

If I can stop that's a win. 

Dr. Linda Bluestein: Yeah, for sure. And I wanna point out just a couple of quick things before we wrap up here. number one, we will attach the big six also [01:16:00] to our resources. 'cause I know Deter Maitland mentioned the big six and people are probably going, oh my God, what's the big six?

So we'll make sure that we give you that as well. And also, I do wanna just point out, because we also were saying, using the word bendy, there are people who are bendy who are just fine. I have friends who are bendy in their seventies and they're just fine now. They grew up in a different environment, so, you know, maybe their epithelial barriers, you know.

So I just wanna point out that distinction that there are people who are, you know, more or less bendy, but have lots and lots of immune dysfunction. And there are people who are, you know. Quite bendy, but for various other factors, they're able to function really well. So there's a, so much that goes into this, and this has been such a fantastic conversation.

I really appreciate both of you being here. It's really been wonderful. before we go, Dr. Maitland, can you tell us where we can learn more about you and also if you have any special things that you, want to share? 

Dr. Anne Maitland: Well, one, thank you for the invitation. I always enjoy catching up with, you [01:17:00] know, kindred spirits, in this space.

so I, would have to say, you know, I, I have, you know, MUSC is really cultivating a program, so that's one. Two, I'm still, I still have a private practice that I'm able to kind of do peer-to-peer consultations, and that's called clinical paradigms. and then there are books that I've written chapters in that I think are very helpful.

the one that I kind of. Recommend the most is called transforming Ehlers-Danlos Syndrome. An epigenetic phenomenon. The first author is Danes, D-A-E-N-S. This is actually work that was kind of anchored out of the Frenches EDS center, which was anchored by physical medicine and rehab. And so they have a lot of good, you know, personal hacks.

I do wanna emphasize if you suspect that you have past orthostatic intolerance, like, and it's amazing how [01:18:00] people get acclimated. I, would lean into the Bateman Clinic where they, I don't think people need to be subjected, and I'm a little bit biased. I don't think people need to be just subjected to a tilt table.

I think just doing orthostatics appropriately will give you an answer whether or not there is dysregulation of that nerve, mast cell component as well. And so the Bateman Horn Clinic has really good, data there. and then again, I would say. Mast Cell Disease Society, TMS four Cure, AAN Society, thisno Project, and we have a couple of other, I have a couple other chapters coming out with some books that talks about neuropsychiatric nerve epithelial barrier of mast cell dysfunction as well.

Dr. Dacre Knight: I'm looking forward to this. 

Dr. Linda Bluestein: Yeah, 

me too. And I think both of you are hosting CON conferences in April, so maybe Dr. Knight, you can tell us briefly about the con, the conference that you're hosting, and then Dr. [01:19:00] Maitlin can tell us about the conference that she's hosting. 

Dr. Dacre Knight: Absolutely. Well, if you, like what you heard today with Dr.

Malin, I'm pleased to share this. You'll be speaking at our symposium in April 9th and 10th. And it's available online. You can register online and it is in person here, Charlottesville, Virginia. Registration is free. So anyone is welcome to attend. And I don't have a link offhand, but if you just type in ER's, demos symposium.

UV, you'll, see it in Google. So feel free to register and get more of Dr. Madelin if that's what you, that's you want. That's, I know I do. 

Dr. Anne Maitland: Flowers and chocolate are in the mail. No. 

Dr. Dacre Knight: Yeah, right. 

Dr. Anne Maitland: no. Well, first of all, I appreciate that invitation. and to kind of pivot to what we're doing, it's called Mind 26 20 20 six.org, and that's April 21st is the EDS day.

We're bringing in some great speakers, to kind of just review [01:20:00] that nerve mast cell dysregulation and how joint hypermobility can be used as a screen for neuropsychiatric issues. So we're really looking at that barrier mind disconnect that has happened and has been kind of fractured, in our modernization of our environments.

Dr. Linda Bluestein: Okay. Wonderful. Well, thank you so much to both of you for being here. And Dr. Maitland really appreciate you sharing this super valuable information and, what a great lens to look at these conditions that we've known are complex and we know are multidimensional, but we've been really, you know, struggling in some regards, although we have lots of tools, so that's why this is so important for people to listen and share and spread the word.

'cause this is a easy way for people to get information. They don't have to leave their house. And it's accessible to, most everyone. So, so thank you again. 

Dr. Anne Maitland: My pleasure. We're all about keeping hope alive.[01:21:00] 

Dr. Linda Bluestein: Well, that was such a fantastic conversation with Dr. Maitland, with guest host Dr. Knight. And I love looking at these conditions with a completely different lens because we know that there is so much more to being hypermobile, to having connective tissue disorders, mast cell activation syndrome, dys, adenoma, et cetera.

So it's so important to be keeping our minds open and be thinking of all the possible ways in which our immune system and other systems could be contributing to our symptoms. Thank you so much for listening to this week's episode of the Bendy Bodies Podcast. If you'd like to go deeper, I share additional.

Education, clinical insights and resources in my newsletter, the Bendy Bulletin, which you can find on substack@hypermobilitymd.substack.com. You can also help us spread the word about connective tissue disorders by leaving a review, sharing this episode, or sending it to someone who needs it. These small actions truly make a difference in raising awareness about conditions that are [01:22:00] still widely misunderstood.

And don't forget, full video episodes are available every week on YouTube at Bendy Bodies Podcast. As many of you know, I offer one-on-one coaching and mentorship for both individuals living with connective tissue disorders and people caring for them. You can learn more about these options on the servicesPage@hypermobilitymd.com.

You can find me, Dr. Linda Bluestein on Instagram, Facebook, TikTok X and LinkedIn, all at hypermobility md. As part of our collaboration with the UVA Ehlers-Danlos Syndrome Center, we also wanna share some of their helpful resources. For questions or appointment inquiries, you can contact the UVA EDS center at our UVA EDS center@uvahealth.org.

Again, that's the letter R as in Robert uva, EDS center@uvahealth.org. You can find answers to common questions at uva health.com/support/ EDS slash faq. Our incredible production team is human content. You can find them on TikTok and Instagram [01:23:00] at Human Content Pods. As you know, we love bringing on guests with unique perspectives to share.

However, these unscripted discussions do not necessarily reflect the views or opinions held by me or the Bendy bodies team. Although we may share healthcare perspectives on the podcast, no statements made on bendy bodies should be considered medical advice. Please always consult a qualified healthcare provider regarding your own care.

For more information about the Bendy Bodies program, disclaimer and ethics policy submission verification, licensing terms, HIPAA release terms, or to get in touch with us, please visit bendy bodies podcast.com. Bendy Bodies podcast is a. Human content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies podcast.

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