Anne Maitland - Living with Mast Cell Activation Syndrome

Well, good morning, I have the pleasure of talking about a

cell

that has really been like the Rodney Dangerfield of the body for a hundred years and has really come to the fore in the past, I would say ten years, which means that the rest of the The medical community will find out in another ten years, but many of us live with massively mediated disorders; It's just a question of whether or not it's mass

activation

syndrome

, so we're going to talk a little bit about what mass

activation

syndrome

is and then how you can control it, so you had to ask yourself if you have mass activation syndrome.

MassHealth activation and this tells you all the different types of symptoms that can occur because the

mast

cell

s actually live in each of them. organ, whether it's your skin, your intestines, your brain, your spleen, your joints and if they activate inappropriately, it's like calling the police and the SWAT team to your neighborhood because you have a cat in the tree, so There are many disorders mediated by massive cells. It is anticipated that if you live in an urban or industrialized country, one in two of us is experiencing some type of muscle activation problem, whether nasal congestion or not, and has asthma or asthma-like symptoms.

IBS and actually neurocognitive impairment and what it is. Even more surprising, a report from just two years ago identified that at least one in 50 of us has had an anaphylactic episode. So why are we seeing such a large increase in these hypersensitivity problems? have drastically changed our environment in the last 20 years, so we will say that life before plastic and life after plastic we spend more, much more time indoors, we have less control over the food we eat, we don't even have less control about the air we breathe or the substances that fall on our skin and this has actually caused the genes that we have inherited from our ancestors to be completely confused, to borrow this from the multiple chemical system, multiple chemical sensitivity practitioners, basically, there are individuals who are susceptible to insults from the environment, whether you're talking about infectious diseases, the one that's ruling the most attention right now is Lyme and how that has actually opened the door to chronic hypersensitivity disorder, you may You may have seen at the top of the New York Times article where they were talking. meat allergy, so these people, when they get it, they develop Lyme and then they end up with delayed hypersensitivity reactions, so here we have an infection that opens the door to a chronic hypersensitivity disorder and then after the reintroduction of other different types of triggers, basically your immune system. it just doesn't go away, so we've noticed that in the allergy immunology community, anyone young or old, and now we're starting to see adults and older people or experienced people, as I like to call myself within my AARP card, now are susceptible to having massive or mediated inappropriate activation that affects different types of cellular systems, um and unfortunately many of these individuals end up with a delayed diagnosis because internationally we have a shortage of specialists in allergic immunology and in this country alone we have seventy-seven programs of training of the seventies. -seven training programs, only three do research on

mast

cells, so we have a lot of people who are simply not trained in how to recognize and then diagnose and treat these Massell-mediated disorders and because there is such a delayed diagnosis in part because patients They have a tendency to kind of focus on individual symptoms, so you end up going to that particular specialist.

General practitioners are not prepared to appreciate immune-mediated disorders because they received a lecture on mast cells twenty years ago and therefore many of these individuals end up knowing the tests. are normal or the test that Renata ordered and since it's not measured it doesn't exist so there are people who actually end up sick and then practitioners tend to be if you're lucky they're just dismissive and sometimes actually, It can be quite harmful when they are discarded and treatments that are inappropriate and actually cause more damage are started. This is not unusual for many people who have massive immediate disorders and have comorbid psychiatric illnesses, partly because of the illness itself and also partly because due to the lack of responses from the medical community, so the best way to start To learn how to care for math cell disorders is to ask yourself if you have muscle activation syndrome and these are just a few examples of patients who have gone through our In practice, you should usually have at least two organ systems affected, which will suggest that the mast cells are just regulated, so you can have skin and gut involvement, you can have nasal congestion and headache syndromes, you know it's that combination that's going to say it's okay. we started looking at whether mast cells misbehave or not and then three criteria have been established and we're still working on this, but essentially three questions: Do you have signs of symptoms that are worsening due to a cell misbehaving? you have medications such as over the counter antihistamines benadryl claritin Allegra is there tech zantac taga med pepcid or prescription medications such as Chrome one or singulair and show modest improvement in your symptoms that suggest you may have mass activation syndrome. and then what data do we have to support that your mast cells are misbehaving?

I'll talk a little bit about the obstacles for each of these criteria, but I want to go into more detail about each one, so take a core native team, so you really need to identify a professional who is willing and able to work with you. , don't dismiss your symptoms, don't say it's a somatic conversion disorder or you know it's just allergies and then coordinate these other specialists who will be involved in your care because you will most likely need gastroenterology and neurology, psychiatry, dermatology , urology because, again, if mast cells misbehave, they can really cause problems in all of those organ systems, so the first question is, do you have mast cell activation syndrome or divine MCAT?

And then once you identify someone, I hope this talk gives you some questions that you can work on with your doctor to try to navigate the complicated maze of health. system of care to find out if you have mast cells and then determine what medications or treatments may be helpful for you other than avoiding it, which I must tell you, tolerance is not free, so you really need to restore tolerance to what you eat what you eat. As you breathe, the wood falls on your skin, it's very important to reduce the stress on your body so that you can then develop tolerance to these exposures, even to temperature, so I borrowed this from the asthma world, where it's important to take a step forward. forehead. your next checkup and basically you want to detect symptoms or signs that are worse than those of Maskull's bad behavior, look what not, you have some risk factor, it is not unusual.

I can't tell you how many parents bring their kids in and get like that. or you know, they tell me they are swollen. A mother took over her daughter's quote and her daughter rejected this is my quote, mom, but usually this will also be repeated in generations and then you also have to write. To see what kind of risk factors you have even in the environment that you grew up in, then I'm going to look at some of the tests that are available, unfortunately we have very few commercial tests available to identify massive cell dysregulation, but even with those tests we could determine if your cells en masse are misbehaving or not and then the next idea is to simply educate yourself about this condition and how it can interact with other organ systems, so it is not unusual, especially in the supposed alien community says If you have a massive dysregulation it is very possible that you also have a connective tissue disorder and also a neuropathy, so it is not unusual for patients who come to our practice for an evaluation to be referred to a neurologist who is knowledgeable about neuropathies. peripherals, a gastroenterologist who is aware of the fact that mast cells contribute greatly to irritable bowel syndrome and we also have the opinion of an otolaryngologist, because controlling the upper respiratory tract is key to sleep disorders, headaches and TMJ disorders and also. just reduce and also be able to get tissue to try to get the mass activation diagnosis, so it's a patient-doctor partnership where you want to get the best functional diagnosis, you want to try to maintain normal function as much as possible. to optimize therapy, whether you're talking about prescription medications, over-the-counter medications, adjuvant interventions like chiropractors, functional neurologists, acupuncture, and I know I'm missing a wonderful conference right now on medical cannabis, but all of these treatments have a paper.

Depending on what is causing your mast cells to be overactive, then the goal is really to know how to eat well, sleep, rest, be able to push yourself and maintain function as best as possible and then after all of these things you need to ask yourself. Am I satisfied with the care I receive? The relationship I have with the doctor is helpful, so here is the checklist. Do you have symptoms and signs that worsen due to the release of misbehaving cells in your organ systems? Does it respond to medications that target Massell's micellar mediators and then?

What test results do we have to support that math cells are simply regulated? So this is just another way of looking at the fact that these are the various organ systems and manifestations of Masum dysregulation that can cause gastrointestinal symptoms, neurocognitive impairment actually if you look at patients. who have a much more common or well-known form of massive cell activation disorder, which is mastocytosis, these individuals will present to an office with cutaneous or gastrointestinal symptoms, but the third most common complaint is anaphylaxis or Vernitis, there are actually problems neurocognitive. mood disorders difficulty concentrating difficulty thinking short term memory remember to see deficits anxiety depression and so it's very important to understand that and we need to develop short screens for general practitioners to try to assess whether people also have neurocognitive problems rather than just prescribe an SSRI or medication and ignore the rest of the symptoms and get an accurate diagnosis to give you an idea of ​​all the different factors that we release ourselves depending on the organ system they are in: necrosis. factor platelet-activating factor these are all things that can influence how blood cells work how the brain works can cause joint inflammation and gastrointestinal upset and many of the treatments actually go after factors that are clarified or not It has been elucidated when mast cells are activated, so when it comes to measuring mass activation factors, as I said, there are very few commercial tests available, we essentially have urine tests every twenty-five years in collections that are not very fun to collect and then, once collected.

For them, you have to hope that the technician doesn't leave it on the table while they have a cup of coffee and then sends it correctly to Mayo or to the Arabs of interest in California. We have blood tests, histamine and taste strips for many of you. They may have measured the taste of the trip and say that is normal. That's not the way to approach it. You must treat mass activation syndrome as an individual. We check the blood tests of people who are having heart attacks. You want to get a baseline and then, yeah. If you have an acute event, you want to check the taste of the trip within four to six hours of a Qun event and if it goes up two points plus 20%, that's a diagnosis of a cellular activation syndrome and, to be honest, the best test is what is carried out. in the tissue where the mass cells are potentially causing the problems, so understand that mast cells are not blood borne, they are only found in the tissue, so it is important to get a biopsy, so if you had a endoscopy or a colonoscopy to allow the The gastroenterologist knows that the pathologist has to be in front of the mast cells, he has to count them there to see if they are round or spindle shaped and then he also has to see if they are clustered or have regulated activation markers. saying that these cells are simply not inactive and then as far as treatments, most of the studies that have been done have focused on histamine blockers, but I understand that histamine is just one of the factors that these cells release and in some cases In some cases the story is not releasednot at all, so we have histamine blockers, of which we have the first ones that work on the first histamine receptor, like Benadryl and zyrtec, we have those that work on the second histamine receptor, which are classically known as heartburn. medications like pepcid and zantac we have medications that are better known for asthma like singulair and accolade and Zhai flow we have L mass stabilizers like kota-kun crumblin and it just occurred to me it's Elizabeth and me. m Elizabeth was really interesting, it was the first biologic to be used to treat asthma in 2003.

It is now indicated for asthma and chronic hives. I had a patient. She wanted to prescribe this medication and she did not have asthma. She was mostly complaining. of gastrointestinal upset and headaches and I asked her if she is progressing slowly and she said no, she doesn't bother me. I told her that wasn't the question, I just need to know if she itches or not and I once told her if she itches more than you think a couple of times a week. For the last few weeks, it is actually an indication to prescribe this medication and see if it is helpful for her symptoms or not.

Unfortunately, when it comes to different organ systems involved, we have a tendency to go to various doctors who have a tendency. focus on their little corner of the sandbox and that's why another reason why people who have massive dysregulation end up having a very delayed diagnosis: the average time to diagnosis for some of these and many disorders can be up to a decade, so one of the first obstacles really is the fact that we have a tendency to have general practitioners who have been poorly educated about the immune system and then we also have doctors who really just focus on their area and say This is IBS or this is anxiety. or this is a sleep disorder and because no one talks to each other no one coordinates care, people end up dealing with these symptoms and they most likely get progressively worse just from the lack of intervention or recognition of those symptoms the second diagnosis the The second delayed diagnosis is that many doctors simply do not know how to use the available tests to identify people who have mass arousal disorder.

I'll share the story of a patient I've been seeing for about three years and she had chronic hives and her tryptase was two or three, I checked on her repeatedly and she had been dealing with IBS for twenty years and she didn't tell me until I saw she was taking medicines in linz s in the electronic medical system. record, we went ahead and did an endoscopy which she hadn't had in 10 years because there has been no change in her symptoms and she had over 90 mass cells per occult power field so it's really important to revisit her and treat to do it. from a different angle to see if you can identify if someone has overactive mast cells or if they have too many mast cells that may be contributing to their symptoms, so the other thing I want to point out is people who normally have a normal trip taste may be indicative That the sensor that is causing the mast cells to become overactive does not require days of travel, for example, we have people who have peanut food induced anaphylaxis and I can check the taste of a trip all day long and it will never be elevated does not mean That this person does not have anaphylaxis or food-induced allergies simply means that there are other receptors that could be on the mast cells contributing to that reaction and this again emphasizes that it is really important.

For example, look at what chemicals could be released that would suggest that the cells en masse are overactive so this is just an illustration that if you have antibodies against pollen, mold or bacteria you may see the release of trip tanks or histamine, but there is a set of receptors that many doctors don't know about the so-called toll receptors and if they are activated, if the mast cells see a bacteria or a virus, the toll receptor will try to control that infection through other things besides histamine and tryptase, so again it is very important type from looking at the blood on different occasions looking at the urine and on different occasions and then doing a biopsy of the organ, whether it's the intestine, the nose, the skin to see if the mast cells are hyperactive or not and then the last, the last criterion, whether you don't respond to the medications or not, you really have to focus on the quality of the medications and whether the mast cells are being called into action appropriately or not, so this is the back of a bottle of benadryl and you can See there are a lot of different ingredients there in the 1970s, the FDA even approved adding preservatives and fillers to baby foods so they can stay on shelves for a year, so it's not unusual for several of the patients I care for receive their compounded medications.

To reduce your exposure to soy, corn, and milk that is added as a binding agent to many of these foods, over-the-counter medications are prescribed and also to reduce your exposure to dyes. It still surprises me that benadryl is so violently pink. Well, actually I like pink, but if it's too pink and that could be a problem too, God bless you. The other problem is the fact that the mast cells actually have a job to do before the Styrofoam does. and plastic and super stops and stores and roads, you know, 500 yards inside your roads, their job was to protect us from infectious challenges, toxic challenges, they are essentially the original Border Patrol board and then after the insult was stifled, his job was to help coordinate. the healing process, which I think is an interesting thought in people who have connective tissue issues, understand that mast cells are really important in helping to coordinate wound repair and so if you're dealing with people who have disorders of the connective tissue, it is the connective tissue disorder that causes the massive damage. dysregulation there is a possibility that the mast cell population is contributing to a diffuse connective tissue disorder, so once you think you have a massive disorder, unfortunately many of my allergic immunology colleagues tend to say you know that your skin test was negative and you and your blood tests for pollen, foods and medications, specific IgE for allergens, but to think that, hell, the only way your muscles activate, you know it's like thinking that the police officer who is watching your neighborhood had only one mugshot and that's the only one.

The way they can tell that this person could be dangerous to you, there are many different receptors on these cells and depending on how these cells are tickled, it can be an indication of why your cells en masse are misbehaving. as a specialist in allergic immunology. I have been caring for people with chronic hives for twenty years and I will stand up and say that I am also president of that Club because I have also been dealing with cold-induced hives for twenty years and I can tell you that you know. if I have hives, if I don't have hives, that tells me that I'm actually copacetic, but if I see a change in the pattern of my hives, it tells me that something is going on, if I could have a respiratory infection, I could be in a ward. hotel lectures it's very cold, but there are many different ways you can tickle those mathematical cells.

These are just a few of the conditions that can be associated with increased L-mass activity and dysregulation, and I can tell you in the column above when it comes to allergies or autoimmune diseases. attack area where, literally meaning another part of your immune system decides to attack the cells in your mouth, histamine blockers might work, but for all of these other conditions you have to undergo other interventions, so once you receive diagnosis of Masel activation, it is really important to determine what type of Massah activation disorder you have, which is best known by health professionals, but it is rare, less than two hundred thousand cases worldwide, our individuals have mastocytosis or what's called mastocytosis junior monoclonal muscle activation syndrome, so you have individuals and I think this is really important because this is the first time that it has been identified that an enzyme that is only found in bulk can cause a diffuse tissue disorder connective, so individuals and there is a company here gene by gene that can make the assessment that individuals can inherit a duplication or triplication of this gene, so every time that cell mass is activated it is released two or three times more tryptase and individuals and this was an observation by Joshua Milner at the National Institutes of Health, will end up with the trifecta of a connective tissue.

The disorder was worsened by a hypermobile Ehlers-Danlos syndrome, they will have pot-shaped dissident Omiya and will also have hypersensitivity to allergic and non-allergic triggers or muscle activation syndrome, but most of us mast cells would be inappropriately named after them. something like having your police officer called 9-1-1 because your dog is barking at his sister. I don't know, but it is very important to understand what tickles mast cells to increase their activity, etc. When individuals, once I try to identify whether cells en masse are hyperactive or not, I don't try to find out why and in this community, the only thing that is extremely common could be what is called de mater graphia or de menthe agraphia , we have the ability to write on your skin and it becomes a hive, so that's a classic marker for people who have massive cell activation issues and then I also label this.

I'm an idiot, I can't understand it, but we still have people who have video Pathak Anaphylaxis and there is more research to be done, so again, do you have massage voiding syndrome? What does it taste like? So, as a specialist in allergic immunology, I have to be grateful to the professionals in this community. I have learned how to do it. I bought ten screens and when I presented this to the American College of Immunology, Allergy and Asthma, the ten people who were in the room for that talk basically said we need to start forcing people to try to determine whether or not they have a high level . permanent, you know they have a mass, I guess so, so this is the battery of tests that I tend to order when patients come in to see whether or not they have secondary Messala activation syndrome, so allergy testing is important.

It is not necessarily necessary to perform another endoscopy or colonoscopy, although I just met a patient. I don't know how they paid the gastroenterologist for this, but they performed nine colonoscopies in ten months. You definitely want to do a rheumatology panel if No, this is rheumatoid arthritis or move towards a flashlight where I think with the rheumatologist we call zero negative rheumatoid arthritis and you want to check for autoimmune antibodies against the thyroid. I think what's really important is to start checking for antibodies against the peripheral nerves and it's important to identify a neurologist who has experience in looking for small fiber neuropathy, definitely, in detecting errors.

Danlos syndrome, where connective tissue disorders occur, and I'm just going to talk briefly about some of the research that we have done in patients who have gone through In fact, we have identified people who have immunodeficiency and their symptoms are hypersensitivity reactions that they have if they have a history of infections, recurrent infections, to see that serious infections are remote, but this is where your history is and you know you take note of your trip. It's really important to try to identify not only that you have a Masla activation problem, but it's also immunological, it's a deficiency in another component of the immune system that could be intervening, so I don't know, you may have seen these signs.

I have seen this. One time, in fact, when I went to the meeting in Houston, was it just a cold? So, these are the ten warning signs to look for a primary immunodeficiency, you know, from recurrent infections to pneumonia. In fact, I took care of a woman who had 20 pneumonias. in 25 years and the only reason she came to our attention is because her pulmonologist retired and it turned out she had a form of immunodeficiency called common variable immunodeficiency and now she's brought in the Exorcist because she was misdiagnosed so if you have sporadic problems infections infections recurring if you have autoimmune disorders, interestingly enough, you can experience autoimmune hair loss thyroid disorders diabetes this can be a sign that you are missing a component in your immune system, either in the cell or in the proteins that could be causing this.

This is happening and also some forms of malignancy are also associated with medium deficiency, so in the last two years I had the pleasure of speaking with a young woman who came from Chile and we reviewed the chartsand we identified individuals who had mannose. P Nia's idiopathic cd4 lymphocyte binding lectin deficiency and antibody deficiencies and her complaints again were not infections but recurrent were hypersensitivity disorders so basically there was a loss in control and in the immune system and you know the analogy that I commonly use with For many patients, if your house is on fire and the police show up, would you get angry at that and say no, but the police officer doesn't necessarily know how to put out the fire and if they start doing it? help, they could potentially aggravate the situation or hurt themselves, so this is what the mast cells are doing, they are probably compensating for the lack of a protein or cell that is much more effective in dealing with that infectious or toxic challenge and because we are a environment in which we are increasingly exposed to chemicals that are considered toxic, whether naturally occurring, such as mold, or artificial, in the form of gas release from newly manufactured materials, mast cells are not removed, so that in these individuals the treatment from activations of the law of the mask how to live better feel better is necessary to identify if you have a massive L disorder or not and then you must discover what is causing those massive cells to be deregulated if it is allergies , these are the recommended measures to avoid it, but and especially with diet, and many patients tend to focus on what they eat and my answer is that it is important to eat well maybe four or five times if necessary.

Gnomeo breathes six or seven times a day. 18 times a minute and your skin is constantly exposed to the environment, so it is really important to take a much more holistic approach with regards to modifying your environment and understand that when you continue to modify your environment, you begin to lose the ability to develop tolerance and also if you have susceptibility to infections, whether it's sinus pneumonia or chronic Lyme or beryllium or Canada or the herpes virus, it's really important to try to understand whether or not you have an immune deficiency that's contributing to that and then you need to focus on treatments .

We have identified two people who actually had hepatitis B and were on hepatitis treatment. They have their hypersensitivity disorders under control and we also have many medications and more to come regarding the treatment of classic autoimmune disorders, whether it's rheumatoid arthritis or psoriasis or Crohn's disease. Interestingly, we have at least two patients that I have used for Tuckson. to be able to control his amin hypersensitivities as well, so in many ways I will encourage you to be like that mole and try to focus on whether you have little things to evaluate before it turns into something big.

We have a tendency to encounter patients when they are completely debilitated by the massage therapist's regulation, which is associated with, you know, not so commonly associated with nerve involvement, whether in the form of small fiber neuropathy or immune demyelinating polyneuropathy. chronic, and I also know it. I love these types of symptoms, it is better to prevent a disaster than to treat it. I have many patients who come in and may complain of headaches and congestion problems. I will test for asthma if you have them or also for gastrointestinal symptoms because I understand that a lot of the throat symptoms could be postnasal drip or it could be laryngeal reflux 400, this is just the contents of the stomach that also reaches the throat, so when start meeting with your doctor, try to do it in small bites because I have a patient. who came out with his story, which was eight points ahead in five pages, it's a lot to take in, but I can appreciate it because you know I shared that I've had chronic hives, but if it weren't for my involvement.

If I were welcome to speak here, I would have been able to diagnose my daughter, who also has this, regarding Ahlers Davos mass or dysfunction, so it is very important if you are working with a practitioner who does not take you seriously, then I need identify another practitioner who does, so I'll end with this comment from an erudite singer who has an incredible story. If you ever have time, this is a woman who started out as a waitress and a screenwriter and now has a major division of the National Institutes of Health and the division of allergy immunology, she was the one who basically said this is not a question of having antibodies positive.

I can go out right now and test 100 people for an antibody to peanuts, the interesting question is twelve people outside the hunter will have a positive test, but only two of the 12 will be symptomatic, so they will lose tolerance, but ten maintain tolerance, so if we can find out how individuals lost their or, more importantly, how the ten retain their tolerance, which definitely involves reducing stress, whether it's dealing with infections, changing the weather, which That is, you can try to restore the balance you will need with respect to mathematics, concentrating on what you need to pursue and ignoring the changes. in the temperature of the air fresheners, whether the food that was cooked the day before has gone bad and now has chemicals that could irritate you and with that these are the steps to feel better and I'm going to tell you health and I.

I'm happy to answer questions or should I wait until later. Well, fabulous. Thank you for your time. I appreciate your efforts.