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This episode is titled, "A Critical Link? Mast Cell Activation and Chemical Intolerance."
My guest is Dr. Lawrence Afrin, a long-time physician and expert on MCAS (Mast Cell Activation Syndrome).
You will hear Dr. Afrin discuss:
I hope you enjoy the conversation and find it of benefit.
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Dr. Lawrence Afrin 00:05
I actually was fortunate enough in those early years to be able to call that some of the patients I had not been able to figure out what was going on in them. And I said, ‘I think I've got a new idea or what might be going on,’ and you and I was able to reach some of them and call them back. And I'm not saying I found that MCAS was the answer in all of them. But it turned out that in many of them it was.
Aaron Goodman 00:32
Welcome to the Chemical Sensitivity Podcast. It's a podcast that amplifies the voices of people with multiple chemical sensitivity or MCS, also known as Environmental Illness, Chemical Intolerance and Toxicant-Induced Loss of Tolerance or TILT. The podcast also highlights emerging research about the illness.
This episode focuses on the emerging question of whether Mast Cell Activation Syndrome or MCAS is linked in fundamental ways to Chemical Intolerance. My guest is Dr. Lawrence Afrin, a long-time physician and leading expert on MCAS. Dr. Afrin practices medicine at the independent Armonk Integrative Medicine Center for Personalized Medicine in Armonk, New York, and treats many people with MCAS. I first learned about Dr. Afrin’s work after stumbling on his 2021 research paper, which he co-wrote with a number of scholars, including Dr. Claudia Miller, an expert on Chemical Intolerance and TILT at the Hoffman TILT Program at the University of San Antonio in Texas.
The paper, which you may have read, is titled, “Mast cell activation may explain many cases of chemical intolerance.” In their paper, Dr. Afrin and his co-authors write that quote, “More than half of MCAS patients (61%) from our practice met stringent criteria for chemical intolerance based on the 50 item QEESI (Quick Environmental Exposure and Sensitivity Inventory).” They add this is an area they will continue to research.
I'm going to provide a link to the paper in the show notes and in my conversation with Dr. Afrin and you'll hear him talk about some of the key elements of his research, including could MCAS be at the root of chemical intolerance for many people, the primary symptoms of MCAS so people can determine if they may have the illness, dietary and medical interventions people with MCAS and MCS could explore.
I hope you enjoy the conversation and find it of benefit. We release new episodes twice a month. The best way to never miss one is to subscribe for free wherever you get your podcasts. Leave a review on Apple Podcasts. It's a great way to help others learn about the podcast. And thanks so much for listening.
Dr. Afrin, thank you very much for taking time to speak with me on the podcast.
Dr. Lawrence Afrin 03:08
Pleasure. Thanks for the opportunity.
Aaron Goodman 03:10
There is a lot that I'd like to ask you about. Maybe we could talk a little bit about your most recent research or a paper that you've recently written, which is titled, “Mast cell activation may explain many cases of chemical intolerance.” So can we just jump to it is your central finding of this paper or of your recent research that many cases of chemical sensitivity, intolerance, and TILT could be explained or connected to MCAS?
Dr. Lawrence Afrin 03:44
That's possible. Certainly, in the large MCAS patient population, I see multiple chemical sensitivities or frequently. And what the research showed is that many patients who have Multiple Chemical Sensitivity score on a instrument looking to see if they might have Mast Cell Activation Syndrome, they score fairly high. The higher somebody scores on the QEESI instrument for having chemical sensitivity, the higher they're likely to score on the symptom checklist so to speak. For Mast Cell Activation Syndrome, we still really don't know for sure what percentage of chemical sensitivity patients actually have MCAS that would require taking a cohort of chemical sensitivity patients and not only doing a symptom survey on them, but actually doing the testing on them to see if we can find the evidence of the laboratory evidence of mast cell activation in them. But the preliminary study that was published would seem to provide good cause for proceeding on to follow on study to look more specifically for the laboratory evidence of mast cell activation and chemical sensitivity population.
Aaron Goodman 05:17
So for folks who aren't familiar, the QEESI test is set of questions that people can either take to their clinician or ask themselves to determine whether they have chemical sensitivity. And so what I understand is that in your study, you've invited people with MCS to look at that test, answer those questions, and also ask questions about MCAS, whether they have MCAS, is that right?
Dr. Lawrence Afrin 05:44
Dr. Gerhard Moulder, an expert in the field of mast cell activation, he and colleagues developed an instrument originally about 15 years ago to look at the history of a patient and come up with a scoring system to see what the likelihood was that they would be found to have mast cell activation, if we were to test them for it. Dr. Moulder and his team are at the University of Bonn in Germany and Dr. Claudia Miller and colleagues are at the University of Texas Health Science Centre at San Antonio, many years ago, developed the QEESI, an instrument for assessing for the likelihood of Multiple Chemical Sensitivity. You know, I had been informally observing for many years, since I first started becoming aware of Mast Cell Activation Syndrome in 2008. I had been informally observing for many years that there was a seem to be a strong overlap in the populations. But Dr. Miller came to me just a few years ago, having kind of stumbled across MCAS. You know, she had been looking for decades for some sort of rational biological explanation for you know, what could actually biologically be going around in the body to account for all of the sensitivities and reactivities in an MCS, a Multiple Chemical Sensitivity patient. And she kind of stumbled across MCAS, and of course, I'm wondering, might there be a connection, and that led to her getting in touch with me and are ultimately pursuing this joint preliminary research.
Aaron Goodman 07:33
Potentially groundbreaking research?
Dr. Lawrence Afrin 07:37
Actually, mast cells have been researched for more than a century, but the bulk of that research was either on basic mast cell biology, or on the very rare mast cell disease of Mastocytosis, an actual cancer of the mast cell, but it really wasn't until just about 15 years ago that we started realising there is this other mast cell disease, a far more prevalent mast cell disease and Mastocytosis is that and this other disease has now come to be termed Mast Cell Activation Syndrome that I started becoming aware of, I guess it was about 14 years ago, when I stumbled across my first patient and whom I ultimately after a lot of work came to figure out that's what was going on with the root of her many problems.
But you know, the word groundbreaking is a loaded word. I don't know that I want to use that word. I think what we're offering here is a novel idea in a novel and rational idea in an area chemical sensitivity, that, unfortunately, has been searching for a long time. It's been challenging, trying to come up with rational ideas for what could account for all of the reactivities, which I think we have to acknowledge, in many of these chemically sensitive patients are kind of weird, at least at a superficial level, at least initially, to the uninformed observer. Many of these reactivities seem quite weird and curious and bizarre. So, it's kind of easy to understand if there's no rational biological mechanism to explain them. It's kind of easy to understand how many people doctors, family friends would come to just presume by default that the symptoms these patients are having are psychosomatic, or consequences of other primary psychiatric disorders. Basically, you're dreaming it all up. But no, that's not what's going on. These patients know very well what they're feeling and the only question becomes why are they feeling what they're feeling. And you know that there is such a thing as psychosoma, but it's a pretty rare disorder.
And we're beginning to find out that MCAS is a pretty common disorder, although its biology is so complex and so variable from patient to patient. A patient that the symptoms that any given MCAS patient has often are quite different from one MCAS patient to the next and to the next. So, at a superficial clinical level, it becomes somewhat difficult to at least initially learn how to recognise that what's going on in a given patient might be MCAS, because at a superficial level, these patients often look and act and behave quite differently from one another. It's difficult to initially see the pattern to MCAS. And there are patterns, but it's difficult to initially see because the superficial symptoms are so different from patient to patient and patient. But it's recognising the patterns that are so important because that's what diagnosis is an art in pattern recognition. So, I think what we're offering, what Dr. Miller and I and the rest of our colleagues on this work have begun to realise that MCAS offers a novel and rational explanation potential explanation for what's going on in MCS. So interesting idea. Now the hard work has to be done to prove or disprove it, and that is going to be harder and surprisingly more time consuming and considerably more expensive work to do. But if nothing else, it's an interesting idea and it's a rational idea. So once the resources can be acquired to move forward with more research strikes, at least to Dr. Miller and myself, it would be a good use of resources
Aaron Goodman 12:12
For folks like me who have a very limited understanding of mast cells and Mast Cell Activation Syndrom, could you give us a very simple understanding?
Dr. Lawrence Afrin 12:28
Well, mast cells are just one type of quite a number of different types of cells in the body that comprise the immune system. Mast cells are actually a type one of many types of white blood cells. And like all blood cells, mast cells are born in the bone marrow from stem cells, and then they leave the bone marrow and circulate only briefly in the blood and in very low numbers in the blood pretty quickly leaving the bloodstream all about different points in the body exiting into the peripheral tissues, they are present in all tissues in the body pretty sparsely distributed and most tissues in the body. Where they're dominantly sighted is at the environmental interfaces, so the skin, the respiratory tract, the GI tract, and the genital urinary tract. So, they're at the environmental dominantly sited at the environmental and in the walls of all vessels and neurons in the body.
And ordinarily, healthy mast cells just sit there and all these tissues pretty quietly, just sensing the environment around them. They have an extraordinary array of mechanisms, molecular mechanisms for sensing the status of the environment, around them the chemistry of the local environment, the physical forces in the local environment, and as long as everything is going fine, they don't do much of anything. But the moment the body suffers an assault or an insult, the mast cells almost instantly react. Actually, the mast cells react quicker by far than any other element of the immune system. Lymphocytes, for example, typically take hours to activate when there's an assault in the body. Neutrophils take minutes to activate. The mast cell activates and there have actually been some interesting videos developed in the laboratory that show the mast cell almost explosively releasing its mediator mediators and that's what mast cells do when they detect a threat in the environment. They very quickly release stocks of these very potent chemical signals that they have been stockpiling in advance chemical signals that are generically called mediators. And once a mast cell has released any given mediator, the mediator diffuses out into the local tissues and ultimately comes to engage or bind with or dock with a receptor sitting on the surface of some other cell in the region of the mast cell, other receptors on these other cells that are specific for the given mediator. And when there is that engagement between mediator and receptor, the cell on the receiving end, so to speak of the mediator, once that docking happens, the cell on the receiving end immediately begins adjusting its functioning, its operation, its behaviour in a fashion that is appropriate given the particular type of insult the body has endured, the receiving cell begins adjusting its operation in whatever fashion is going to be helpful in resisting and recovering from the insult.
And as long as the mast cells are putting out the right mediators in the right amounts, right times, right durations, right places in the body all works. Well, we had, you know, this is all developed through the process of evolution across literally hundreds of millions of years. I mean, humans and their ancestors not been around for hundreds of millions of years, but mast cells have. So, this has all been worked out through evolution of finely tuned mechanism. And as long as the mast cells are putting out the right mediators, then our ability to withstand various insults from the environment, infections and trauma, and so on and so forth. It is nothing short of remarkable.
But sometimes the mast cells start malfunctioning, and they start putting out the wrong mediators. Wrong amounts, wrong times, wrong durations wrong places in the body. And when that happens, the cells and tissues and organs on the receiving ends of these mediators, they don't know that they're getting the wrong signals. They're just biologically programmed to react in a particular way when a particular mediator comes at it. So the situation you get in a mast cell activation syndrome is where the some portion of the mast cells in the patient's body are chronically misbehaving and chronically inappropriately releasing various mediators. And these mediators are then coming to drive other organs and tissues in the body to act up, so to speak in ways that they shouldn't be doing at those times and in those places in the body.
And when you have those other tissues and systems acting up in those fashions, that doesn't add to your health that doesn't help you feel better, that doesn't help you resist and recover from anything. It just makes you feel sick. And the particular manner in which any given MCAS patient is going to be unwell is going to be entirely dependent on which particular mediators are being inappropriately released at which times which durations which mounts, which places in the body, this is the essence of what mast cell activation is and what Mast Cell Activation Syndrome is, not only there is this chronic, inappropriate mediator release that leads to some baseline level of unwellness in one fashion or another in different organs and systems in the body. And quite often it's just so chronic patients often become used to it, they just come to think of it as their normal. Sometimes they even start confusing normal with healthy, and they often will go to their friends or go to the doctor and say, ‘I'm fine.’ But Then when you dig into the details of how they're feeling, they start telling you about this, that and the other issue and you realise, no, they're not really fine at all. They've got a number of issues. It's just that it's become their normal. So you not only have this chronic illness appropriate mediator release in MCAS, but also from time to time, usually in reaction to exposure to various triggering influences, there can be very acute spikes of release. So various mediators from these dysfunctional mast cells. And that can lead to very rapid escalations, flares of various symptoms in the body, sometimes even so severe, such as with anaphylaxis that can even potentially be fatal.
Aaron Goodman 20:37
In your paper, you describe the mast cell reactivity as a battle. And you've done that just now. But it's almost like there's a war taking place, which is a very vivid description. And I think a lot of people will be able to relate to that, because that's what it can feel like. And also that sort of generalised feeling of being unwell so much of the time, and just coming to a place of getting almost getting used to it, accepting that, ‘Oh, I have to live like this now. I don't know what's going on in the body, in my mind, but I am unwell.’ And we do know, and it isn't psychosomatic. And it's so refreshing to hear you, as a leading scientist, really validate, because there are not many we know, right? There aren't many people like you who we can talk to.
Dr. Lawrence Afrin 21:21
Keep in mind that this is not a new disease. It is a newly-recognised disease, and it's turning out to be a very prevalent disease, some research indicating and maybe in as many as 20% of the general population where and the implications of that are obvious that if it really is that prevalent, or anywhere close to that prevalent then in truth, every doctor has been saying this left and right all day long every day, their whole career. So how could it be that my learned profession could get all the way to 2022, and it's just been in the last 15 years that we've just been beginning to, to understand this disease exists?
Keep in mind, or we're 15 years now past the point of the the first case reports of this being published. And this still is not mentioned in any medical school textbooks in any training curricula. So the medical students, the residents, that fellows are continuing to graduate to this day, having never heard of this prevalent disease, and they're going out into practice for the next 30 to 40 years. They too will continue saying this disease left and right and having no idea what's going on with these patients. You know, this is all an educational issue come back and 50 years and every doctor coming out of training will know about this disease just like today they come out of training, knowing about diabetes and hypertension, but it's going to take a long time to get there.
So how did we get to this point where with such a prevalent disease, we didn't even begin to recognise the existence of this until this 15 years ago. Well, a couple of key points. First of all, you have to consider the power of learned biases. We only learned about the existence of the mast cell about a century ago, maybe about 150 years ago to be more precise, but in the vast amount of vast majority of that time. We've only known of one mast cell disease, and that is Mastocytosis, which is so rare disease that most doctors will never see a case of it. And so as you might imagine and understand if the disease if the only disease of the cell that you know is that rare, then it's not surprising that in the roughly seven to 10 years that most doctors train for their profession, you get about one minute of teaching about mast cell biology and disease. And in that one minute, you're taught that these things called mast cells exist, you're taught there's this one disease, Mastocytosis. It's incredibly rare. And it presents with mysterious anaphylaxis out of the blue. And you're taught that the mast cells produce two mediators, you're taught that the mast cells produce histamine. And we've been studying histamine for about seven years or so we have a pretty good idea of what histamine does. And you're also taught that the mast cells produce tryptase. And we've been studying tryptase for roughly 45 years or so. And we still don't have all that good an idea of what the primary function of tryptase in the human body is. And that just illustrates how challenging this research actually is. But that's all we're taught.
So, now there comes this disease, and I'm being facetious. I'm saying because it's not a new disease. It's just a newly-recognised disease. But now there comes this disease. is which, by its essential biology, it presents not in just one or two ways, like most other diseases do, but it presents in 1000 different ways. And I'm probably grossly underestimating there. And it's because of the complexity of the mediators. Turns out the mast cells don't produce just two mediators, the mast cells have now been well documented by the biologists to produce more than 1,000 mediators, each of which has a huge range of effects throughout the body, again, not a problem as long as the mediators are being released by the mast cells in appropriate amounts and appropriate times appropriate places in the body.
But when you have so many different mediators getting released inappropriately, the potential for multi system chaos, so to speak, is just extraordinary. But it's going to be quite different from one, the details are going to be quite different from one patient to the next, depending on which mediators are being inappropriately released, under which circumstances and you know, which amounts which times which durations, which places in the body. So the challenges facing doctors are number one, they haven't even been taught that such a disease exists. And then on top of that, in contrast to just about every other disease they've been trained on this disease presents not with just one or two patterns, but with at least at a superficial level, a zillion different patterns. And that can make it so what happens in the doctor's office is that the doctor comes to see chronically multi systemically mysteriously ill patient a whose specific symptoms look, that patient looks and acts and feels quite differently from chronically mysteriously ill patient B and C and D and E. And without knowing that there is such a thing as MCAS and not knowing what the overarching patterns to this disease are, it can be very difficult for the physician to even have the initial insight that there could be some disorder in the human body, something under the hood, so to speak, in all of patients A, B, C, D, E, and F, just different variants of this same root problem. That's actually what's driving all the superficial issues in each patient.
I myself, I was 13 years out of training, you know, 11 years and training and then 13 years out and a practice and in a, you know, in an academic environment, before I came to understand this is what was at the root of the issues in the first patient whom I came to recognise it but soon after recognising that patient, I began to realise, ‘Oh, my goodness, I've actually been seeing this all along. And I've been missing it all along.’ And I actually was fortunate enough in those early years to be able to call back some of the patients I had not been able to figure out what was going on in them. And I said, ‘I think I've got a new idea or what might be going on in you,’ and I was able to reach some of them and call them back. And I'm not saying I found that MCAS was the answer in all of them. But it turned out that in many of them it was it's just that it looks superficially quite differently from how that first patient appeared to me.
What I found is that what most MCS and MCAS patients need, you can imagine that there aren't very many doctors yet worldwide who have come to develop even any awareness of MCAS, let alone any significant familiarity with disease. So honestly, what most patients will find as their best ally and advocate in trying to get evaluated for this is sure if they can find a relatively local doctor is already familiar with that’s terrific. But you can understand most patients will not be so lucky. So honestly, what most patients are going to want to be looking for is some doctor who's at least willing to learn about this and at least willing to willing to at least try to help the patient vet this idea both diagnostically you know running the tests that are appropriate to run to look for this. And once it has been proven that this is what's going on with the patient, then at least try to help the patient in managing it.
And the good news on that front is that we've actually already found quite in a remarkable array of interventions that have been found helpful in various mast cell patients as somewhat frustrating. We don't have any methods yet for reliably predicting which interventions will best help the individual patient. That's going to take a whole lot more research. But the vast majority of these interventions, most of them are drugs, the great majority of them are quite safe, they're easy for any doctor doesn't matter what specialty they are, they're easy for any doctor to prescribe and to manage. So as long as the doctor is willing to learn and willing to try to help the patient by prescribing trials of these different drugs, and it doesn't take long at all with any of these, with most of these interventions to figure out if they're going to be significantly helpful for the individual patient, typically only a month or two with each drug that's tried out as long as the doctor and the patient together can put forth enough patience, and persistence, and a methodical approach.
And stepping through the trials of these treatments. One at a time, my experience has been that most of these, in spite of the complexity of the disease, and how variable it is, from one patient to the next, my experience has been that most of these patients actually do manage to sooner or later identify some cocktail of mast-cell-targeted treatment, which really does get the patient feeling significantly better. So you need the doctor who's going to be willing to learn and willing to try. And I am aware that for many reasons, most of them legitimate. A good number of doctors, unfortunately, are not so willing to learn and try, especially regarding a disease that based on their training, they couldn't ever even conceive of that disease having any intersection with their own specialty.
But in spite of those challenges, and finding the helpful doctor, I'll tell you, it's also been my experience, and this is with patients all the world over for the last 14 years now that if the individual patient is sufficiently diligent in exploring the range of doctors within a reasonable travel distance from home it as long as they're reasonably diligent and exploring the options for care that are available to them, they almost always managed to find some doctor who's willing to learn and willing to try. And frankly, it's been my experience at once the doctor who's willing to learn and willing to try takes on this intriguing notion that maybe what's going on in this long mysteriously ill patient is this disorder of mast cell activation of the doctor never heard of before. And then he runs the testing.
That proves it to be the case, when nobody had ever previously been able to identify a sensible unifying diagnosis in the patient in spite of decades of testing in other directions. And then the doctor goes ahead and goes ahead and tries relatively simple treatment for this disease and soon starts seeing for the first time in the patient's life significant improvement in the patient's health that's often transformative, not just for the patient, but for the doctor to because the doctor then starts to see the bigger picture the larger patterns and starts to realise, ‘Oh, my goodness, I've been seeing this my whole career and I've been missing it because nobody had taught me and because it looks so different at a superficial level from every patient.’ So then the doctor kind of eagerly begins exploring this diagnostic possibility and other long mysteriously ill patients and as prevalent and disease as it's turning out to be, he actually does start finding a number of these patients and finally starts making them better. So I've come to call this actually chicken soup for the doctors.
Aaron Goodman 34:22
Earlier in our conversation, you talked about the assaults and insults that happened within the body. And you also in your paper write about the significant development of synthetic chemicals. Since World War Two, you write, there's been a rapid development in the number of synthetic chemicals that people are exposed to, particularly in indoor environments. So that's question one, are those the triggers that are impacting or causing contributing to this battle that's happening within the body? And then the second question is some folks with chemical sensitivity and intolerance have real difficulty as you noted, finding doctors who are flexible or willing to explore think outside the box. Even getting to doctor's appointments can be very challenging in those cases, are there things people can start to do on their own while there may be looking for clinician to get a sense of, ‘Yeah, this might actually be MCAS at the root of my chemical intolerance’?
Dr. Lawrence Afrin 35:26
With regard to the first question, there certainly is ample potential for modern chemicals that are not natural chemical compounds in the in our natural environment, ample potential for artificial, you know, man-made chemicals to be triggers of mast cell activation. But let's be careful in not thinking that such chemicals are necessarily the exclusive triggers of mast cell activation. Actually, mast cells have just an extraordinary potential to be able to distinguish safe from unsafe and to decide what constitutes enough of a threat to be worth reacting to. And mast cells can certainly have capacity, they have mechanisms for recognising whether a wide variety of substances, you know, material, various materials and chemical compounds in their environment are triggers or not. But they also have abilities to detect whether various physical forces are threats or not.
And again, as long as the mast cells are working, normally, working properly, this this really isn't an issue for us. It keeps us healthy, but it's when the mast cells start misbehaving, malfunctioning, and they start regarding various substances and forces that in truth really pose no harm to us. But they make an inappropriate decision, so to speak, and come to regard those innocuous substances and forces as threats. And they react and begin releasing all their mediators. So, you know, mast cells have had millions of years to evolve and to learn what are the natural substances in our natural environment, and they have learned well how to disregard most of those innocuous substances. But in just the last several decades, you know, the explosion of novel chemical compounds in our environment? Well, I think we can understand, at least from an evolutionary perspective, how mast cells may be late to the party, and be having a difficult time understanding that many of these compounds really don't pose so much of a threat to the body. But the mast cells don't understand that they just see them as totally novel compounds. And when you combine the novelty of these compounds, together with fundamental dysfunction in the natural behaviour of the mast cell, that's when you start getting these vigorous reactions to sometimes even just trace exposures to some of these substances.
Dr. Lawrence Afrin 38:44
With regard to you know, what you can do if you're having difficulty finding a doctor, what can you do on the path toward finding a helpful local doctor? I think it's basically just taking stock of what your issues have been, and trying to be as systematic and methodical about it as you can as organised as you can categorising all the things that have been going on the pattern, the overarching pattern, and MCAS. The general clinical themes of the disease followed directly from what the general effects are from the majority of the mast cells, mediators. So many of the mediators drive effects that we would clinically classify as inflammatory so the patient is having symptoms of inflammation and other classic symptoms of inflammation, pain and redness and and temperature and swelling. And it's possible for this to happen in any part of the body but if there are symptoms of inflammation and if there are allergic- type behaviours, that's another good fraction of the mast cell mediators driving allergic type behaviours.
And finally, there's another theme. This is actually the hardest of all to clinically recognise. Because it turns out a good number of the mast cell mediators are integrally involved in guiding growth and development in all tissues in the body. So if you have chronic inappropriate release of those mediators, you can actually wind up with a wide range of abnormalities in in growth and development in tissues anywhere in the body. But you know, growth processes happen a whole lot slower than the symptoms from inflammation and allergy. So it could just be a lot more difficult to appreciate that there really are growth and development issues going on. But those are the three themes of this chronic multi-system inflammation plus minus allergic type issues, plus minus abnormalities in growth and development. And I think if the patient can identify that this is the overarching pattern of what's been going on, and putting that together with some of the reviews of mast cell activation syndrome that are openly accessible in the literature, that anybody can find on an easy internet search.
And if you go to a doctor who admittedly is going to need to be a doctor who's going to be more willing than most other doctors to take a little bit more time think a little bit more open minded, be a little more willing to learn and if you can present to the doctor say, ‘Look here is this description of this newly recognised as he's not a new disease, just newly recognised but turning out to be very prevalent, and it describes a pattern here. And it just so happens mind mysterious symptoms for decades running now actually fit pretty well with this description. So I'm really I think it's reasonable to suspect that this might be the root issue. So would you now help me in exploring this Both diagnostically, can you help me access the testing that's needed for this? And then if we find this is really the answer, can you help me access the treatments?’ Because the fact is, most of the treatments are safe and easy for any doctor to manage. It just involves trying and not for very long either, there may be a lot of things to try. So in the aggregate, it may take a long time for any individual mast cell patient to finally find that particular cocktail of mast cell targeted drugs that will best serve that individual patient. But again, if both the patient and the doctor are patient and persistent, my experience has been the odds are good.
Aaron Goodman 43:15
So how about a few short questions? Someone on Twitter writes, ‘I do have severe MCS and I suspect it is due to MCAS. I would like to know how can we manage it without chemical medication since we do not tolerate it?’ So that's the question and I believe if I recall in your paper, you also write about dietary interventions and avoidance.
Dr. Lawrence Afrin 43:39
Step one in managing MCAS and it will remain step one for decades to come until quite far in the future, we actually develop cures for the disease. But until that happens, step one actually is no particular drug at all, but rather identify the individual patient's triggers as precisely as possible and then do one's best to avoid them for the simple reason that it's actually kind of hard for any drug to gain good, sustained control over dysfunctional mast cells as long as the patient is simultaneously and persistently ingesting or otherwise exposing herself to a trigger. So identify your triggers as best you can do your best to avoid them.
And with regard to being unable to tolerate medication products, it actually brings up a very important point. Mast cell patients have a much greater likelihood for reacting adversely to medication products compared to people who don't have mast cell disease. One does have to take into account that there are a very few classes of drugs that just naturally have the ability to trigger the activation of mast cells, even normal mast cells and healthy people but the fact is that in the vast majority of scenarios where a mast cell patient is adversely reacting to a medication product being newly tried pretty quickly out of the starting gate, within the first several doses, it's actually almost never the case, that it's the drug in that medication product that is triggering the patient's dysfunctional mast cells to further activate and then spew out all their potent mediators, which are what's driving all this symptoms that are creating what we would clinically call this side effects. And instead, it's almost always one or more of what we call the excipients. The fillers, the binders, the dyes, the preservatives, it's almost always one or more of the Excipient, it's actually driving the adverse reaction.
So therefore, at anytime, mast cell patient is trying a new medication product and pretty quickly starts having an adverse reaction, you don't go giving up on the drug just because you had an adverse reaction to the first formulation of that drug that the patient or the pharmacist randomly pulled off the shelf for the patient to try for all the patient and the pharmacist and the doctor. No, the drug may work wonderfully well, if it can just be divorced from the trigger. So if you're having an adverse reaction to the product, yes, stop taking the product, but circle back to the pharmacy Have a sit down with the pharmacist, not the technician, they're not trained for this, but sit down with the pharmacist and say, ‘Look, I'm a mast cell patient, I'm reacting to the thing you just gave me and it's much more likely to be an excipient issue than a drug issue, and I need your help, doctor pharmacist, and figuring out which excipient is often listed in the ingredient lists as inactive ingredients.’
But I've learned to dislike that term because it mast cell patients they're not necessarily so inactive. So the more generic term of excipients is probably a better term. But many patients wind up using their pharmacist to help them review the full ingredient list for precisely the formulation the product that they had been taking that was causing the trouble. I'll be the first to acknowledge that when you're looking at the full ingredient list for one product that's caused troubles, it's often difficult to figure out which of the Excipient is the troublemaker, but the fact is most mast cell patients who have adversely reacted a one medication product have actually adversely reacted a multiple medication products.
And that brings up enormous opportunity to compare the ingredient lists of the different products you've adversely reacted to especially if you've had similar adverse reactions to the different products because you pull full ingredient lists, you line them up, and you say what the heck do these products share in common is they're probably not going to have the drug in common, but they could easily have some particular excipient in common. And when you finally identify a particular excipient that might be the trigger. The next step is obvious. The pharmacist has to find an alternative formulation of the same drugs, same dose just without that suspect excipient in the mix, regardless of whether it's another commercially available formulation or worst case, off to the compounding pharmacist, you go to have a new formulation custom made, but either way commercial or compound and you try a new formulation. And if you have a better experience with that product, you just proved it's not the drug. That's the problem. It's the excipient. And at that point, you don't put the drug on your allergy list, you put the excipient and then frankly, you want to look at the ingredient list for everything else you're taking and make sure they don't contain even a trace amount of that excipient, because mast cell patients can easily go from looking and feeling the picture of health to looking and feeling like death warmed over within minutes, sometimes even within seconds of even a trace exposure to whatever it is that's a trigger for them.
So I understand her concern about reacting this such a broad range of medication products, but my experience tells me it's much more likely it's an excipient and if she's reacting to so many different products. It’s one or a very small number of particularly commonly used excipients that are triggers gotten her, so I think there's big opportunity there to even can leverage the information in the ingredient list of the products. She actually has tolerated well because by definition, all of the excipients in those products are not triggers. So those excipients also show up in the ingredient lists for the product she's had trouble with. And those particular excipients are not the troublemaker. She's looking for what's in the troublesome products that's not in the well tolerated products.
Aaron Goodman 50:18
Thank you very much, Dr. Afrin. I have two short questions from podcast listeners. Anne Green on Facebook writes another question about medication but writes, ‘I would love to hear an expert talk about El and other alternatives to heavy medication.’
Dr. Lawrence Afrin 50:40
We'll talk about low-dose Naltrexone in just a second. But let me first disabuse your listeners of the notion that there are such things as light medications versus heavy medications. What you're looking for, are the drugs, that is the molecules that happen to be the right molecular keys for fitting into the particular molecular lock. That is the individual mast cell patient's particular variant of that highly variable disease. There really is no in truth, no distinction between light versus heavy, it's a matter of whether that drug fits with the particular manner in which the mast cells have gone awry in the individual patient's body. If the drug the molecular key, the drug fits into the lump, the individual lock, that is that patient's particular variant of the disease, if the key fits a lot, then the potential benefits are immense. And if the key doesn't fit in the lock, then nothing's going to happen, you're just not going to get anything out of it. So there is no real distinction between light versus heavy except possibly in the realm of cost. You know, there are social factors, business factors, and so forth that wind up determining some drugs are cheap, and others are very expensive in financial terms. But with regard to potential impacts on the body, the medical impacts on the body, there's no real distinction between light versus heavy, it's a matter of whether the individual drug is the right key for fitting into the patient's lock or not.
Now, Naltrexone is well-known to emergency room doctors and EMTs. It is the reversal agent for narcotic overdoses, but that is when it is given in its typical high doses. And it has been what we've been learning in the last several years that very low doses of naltrexone actually seem to have some nice anti-inflammatory activities in patients with Mast Cell Activation Syndrome. There are no good studies that are published on this yet. But this is something that's being seen anecdotally, not only by me, but by a number of other physicians who have come to be quite familiar with mast cell disease. So it's not a drug that can be accessed, at least in the low doses, it cannot be accessed in any commercially available formulations. Yet, the low doses can only be accessed in compounded formulation. So the doctor would have to send a prescription for a low dose to a compounding pharmacy rather than a regular commercial pharmacy. But there is some portion of the mast cell patient population that does find a broad range of improvements, mostly in their inflammatory symptoms from trying LDN. So it's one of as I implied before, a very large number of drugs that we fortunately, even though it's only been 15 years that we've been coming to know this disease, we have already identified a very large number of drugs which have been found helpful in various mast cell patients, the real challenge for the future is going to become learning how to reliably predict which of these many many, many drugs will best help the individual patients and I'm afraid it's going to be a long time in coming for us to do the research needed to learn how to make those predictions in a reliable fashion. Until then, it's going to be a lot of trial and error, but nevertheless, that's still a better situation. We had just 15 years ago when we didn't even know that disease existed. Nobody would ever think to try any of these drugs in these chronically mysteriously ill patients who in truth had MCAS at the root of their troubles.
Aaron Goodman 55:17
Last question, if I may, please. This one comes from Lauren on Twitter and Lauren writes, ‘Is there a link between MCAS and vision problems?’
Dr. Lawrence Afrin 55:27
Probably the best way to start answering that question is to again, point out that mast cells are present everywhere in the body there in every tissue, every organ, every system, and that includes the ocular tissues. And there's actually a wide range of inflammatory and other types of issues, including actual vision issues that inappropriate chronic, inappropriate mast cell activation can bring to different patients, I have seen a wide range of such problems. And I've also been very fortunate to have seen a wide range of drugs that have brought improvements in those problems. Again, to be clear the step one in in successfully managing this disease is to identify the triggers as precisely as possible and then do one's best to avoid them. So if the patient is so fortunate and insightful as to be able to identify that there's some exposure in his or her local environment that's actually bringing about those troubles in the eyes, then doing what one can to either remove the trigger from the patient's presence, or on occasion, you don't have much choice but to remove the patient from the triggers presents, but either way, getting the trigger away from the patient is step one, steps two and beyond are trying, you know, all the different drugs that make sense to try for this disease. So yes, there are definitely connections. In fact, irritation of various forms about the odd is is very common complaint in mast cell patients.
Aaron Goodman 57:15
Well, Dr. Afrin, thank you very much for taking time to speak on the podcast about this and for everything you've shared, and especially for taking time to respond to some listeners questions. I really appreciate it.
Dr. Lawrence Afrin
Thank you so much. My pleasure.
That brings us to the end of this episode of the Chemical Sensitivity Podcast. Thank you very much to Dr. Lawrence Afrin for sharing all of his insights on the podcast. The podcast is produced by me, Aaron Goodman, Dani Penaloza and Kiana Holland.
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