frozenborderline
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Critiques of common conceptions of MCAS
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frozenborderline
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I think that supertoxins elicit specific types of responses, and that most people don't just have one generic immune response to all "triggers"
Strawberry
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My comeback to my fragrance issues has always been "It's the chemical, not the smell." But that doesn't work most of the time, as people keep bringing scented soaps. So I think I am going to start adding that lavender scented products, while I enjoy the smell, make me physically sick. Dog farts, on the other hand STINK. But I don't get headache, sore throat, or throat/bronchial tightening.
I agree with you on this:
I have many. Different parts of the head can be in pain from different gas fumes, on top of the symptoms I listed above.
I agree with you on this:
I have many. Different parts of the head can be in pain from different gas fumes, on top of the symptoms I listed above.
Pyrrhus
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I like how the author points out the many unknowns underlying the concept of Mast Cell Activation Syndrome (MCAS).
1) Not that long ago, mast cells were viewed simply as "allergic" cells. This overly simplistic view said that a mast cell encounters an allergen and releases histamine in response. We now know that mast cells serve many more functions that we are just beginning to understand. A more recent understanding of mast cells is that mast cells are "sentinel cells" that patrol the tissue linings of most organs. Their job is to detect threats at the boundary between tissues, and take appropriate actions to attack the threat and to alert the rest of the immune system.
2) Until we better understand the range of functions that mast cells are capable of, we will have a hard time distinguishing between appropriate and inappropriate activation of mast cells. Some manifestations of MCAS may be an entirely appropriate response to undiagnosed infections or other threats. Other manifestations may be an out-of-proportion reaction to a relatively minor, inconsequential threat.
3) We are also just now trying to understand how mast cells can be controlled by nerves. The classic example of this is urticaria (hives). In this case, mast cells in the skin somehow become activated in response to nerve stimulation. Why/how does this happen?
Obviously, much more research is needed.
1) Not that long ago, mast cells were viewed simply as "allergic" cells. This overly simplistic view said that a mast cell encounters an allergen and releases histamine in response. We now know that mast cells serve many more functions that we are just beginning to understand. A more recent understanding of mast cells is that mast cells are "sentinel cells" that patrol the tissue linings of most organs. Their job is to detect threats at the boundary between tissues, and take appropriate actions to attack the threat and to alert the rest of the immune system.
2) Until we better understand the range of functions that mast cells are capable of, we will have a hard time distinguishing between appropriate and inappropriate activation of mast cells. Some manifestations of MCAS may be an entirely appropriate response to undiagnosed infections or other threats. Other manifestations may be an out-of-proportion reaction to a relatively minor, inconsequential threat.
3) We are also just now trying to understand how mast cells can be controlled by nerves. The classic example of this is urticaria (hives). In this case, mast cells in the skin somehow become activated in response to nerve stimulation. Why/how does this happen?
Obviously, much more research is needed.
frozenborderline
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the author is me 
theres alot of science i didn't include like the fact that the inflammation involved in responses to environmental triggers could involve other cells than mast cells, such as glial cells and macrophages. but i was really really tired when I wrote it and so its a little sloppy. i just wanted to point out that idiopathic is for idiots, in my opinion. there is always a cause. afrin seems to think its genetic and i think when you look at all the environmental changes of the last forty years that seems more likely to be involved than genetic changes
theres alot of science i didn't include like the fact that the inflammation involved in responses to environmental triggers could involve other cells than mast cells, such as glial cells and macrophages. but i was really really tired when I wrote it and so its a little sloppy. i just wanted to point out that idiopathic is for idiots, in my opinion. there is always a cause. afrin seems to think its genetic and i think when you look at all the environmental changes of the last forty years that seems more likely to be involved than genetic changes
Pyrrhus
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Good point. The "sentinel cells" of the immune system are those immune cells that normally live outside the blood, patrolling for external or internal threats to homeostasis. So far, we know about three different types of sentinel cells:
1) Tissue-resident macrophages. These cells live inside tissues, patrolling for threats. For purely historical reasons, tissue-resident macrophages have different names depending upon the tissue in which they live. In the dermis, they are called Langerhans cells. In the liver, they are called Kuppfer cells. And in the brain, they are called microglia.
2) Tissue-resident memory T cells. These cells also live inside tissues, patrolling for threats. These are currently a hot research topic.
3) Mast cells. These cells live in tissue barriers, not inside the tissue itself. They patrol for threats on the boundary of tissues.
Amen to that. Love the "House" quote.
Amen to that.
frozenborderline
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Thanks for expounding on this point with more detail. Sincerely, I knew there were other cells involved in immune response but didn't have the energy to put that level of detail and that was helpful
frozenborderline
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frozenborderline
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At 37:37 on, Anne Maitland, a leading MCAS doc and researcher, makes points that go along with my misgivings about some of the uses of concepts of mcas.
1. Immune deficiencies often correlate with mcas. That's not a contradiction but some of the simplistic ideas about mcas assume that mast cells are just overreacting for no reason and we need to nuke them with chemo or steroids. If there's an immune deficiency leading to mast cells and other innate immune cells "compensating" by being overactive , as maitland says, then treading carefully when it comes to immune suppression is warranted. Of course if you're having anaphylaxis it's onething , but not everyone, especially people with immunoglobulin deficiencies and infections, needs steroids or strong chemo drugs sometimes used in mastodon.
2. Mast cells are not the only cells involved in innate immune dysfunction and we sometimes hyper focus on them because the idea of the disorder is like a meme that causes us to hyper focus on that. Pretty sure she says that here, but if she doesn't, I may be remembering her saying it on a podcast by the center for healing neurology. These podcasts are free on spotify, and would provide additional context to the point I'm making. Yes mast cells are important but we're talking about broader patterns of innate immune dysfunction. Which includes glial cells, maybe astrocytes. Macrophages too. And yes, mast cells. But why focus on a single type of cell?
Also why is the innate immune system compensating? As someone with many documented immune deficiencies , such as IgG deficiency and iga deficiency, I'd like to know.
3. We should also focus on other comorbid things like immune mediated neuropathies
@Hip you may find that part of this talk interesting
1. Immune deficiencies often correlate with mcas. That's not a contradiction but some of the simplistic ideas about mcas assume that mast cells are just overreacting for no reason and we need to nuke them with chemo or steroids. If there's an immune deficiency leading to mast cells and other innate immune cells "compensating" by being overactive , as maitland says, then treading carefully when it comes to immune suppression is warranted. Of course if you're having anaphylaxis it's onething , but not everyone, especially people with immunoglobulin deficiencies and infections, needs steroids or strong chemo drugs sometimes used in mastodon.
2. Mast cells are not the only cells involved in innate immune dysfunction and we sometimes hyper focus on them because the idea of the disorder is like a meme that causes us to hyper focus on that. Pretty sure she says that here, but if she doesn't, I may be remembering her saying it on a podcast by the center for healing neurology. These podcasts are free on spotify, and would provide additional context to the point I'm making. Yes mast cells are important but we're talking about broader patterns of innate immune dysfunction. Which includes glial cells, maybe astrocytes. Macrophages too. And yes, mast cells. But why focus on a single type of cell?
Also why is the innate immune system compensating? As someone with many documented immune deficiencies , such as IgG deficiency and iga deficiency, I'd like to know.
3. We should also focus on other comorbid things like immune mediated neuropathies
@Hip you may find that part of this talk interesting
Rufous McKinney
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Pyrrhus
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Related discussion:
Mast cell activation syndrome is not what it seems
https://forums.phoenixrising.me/threads/mast-cell-activation-syndrome-is-not-what-it-seems.83393/
Mast cell activation syndrome is not what it seems
https://forums.phoenixrising.me/threads/mast-cell-activation-syndrome-is-not-what-it-seems.83393/
Unfortunately, "medical science" is never going to be as precise as the "hard sciences," in general, and also, delineating a syndrome is often the first step to a better understanding (and without it, there may not be enough research funding either). I have had MCAS type symptoms since I was very young, and I lived in different places and ate very different diets over the years. Both my parents had symptoms of MCAS, though neither ever had nearly as many as I have had. And while what led to one's mast cells becoming super-sensitized may be determined at some point (though perhaps there is more than one cause in at least some cases), there are too many diverse symptoms to say that something like mold spores are to blame in all cases. For example, when I was at the doctor the other day for tachycardia, I was trying to explain to him why I thought I had MCAS, and he decided to see if I had dermatographia, which I did. Does anyone think the two are directly related? Then there are all the other symptoms that are uncommon and most doctors would never imagine are related: osteoporosis, "common allergy symptoms," wasting, limb weakness, laryngospasm/swallowing issues, edema in the legs, bloating, tinnitus, extreme sensitivity to light, sound, and smells, rashes, loss of balance, tachydcardia, "head fog," heat intolerance, food allergies, sleep issues, etc. Most of these were well resolved until a few weeks ago, I'm guessing due to the Loratidine becoming ineffective.
frozenborderline
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I didn't say anything about mold spores being to blame in all cases
frozenborderline
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Could be related to mcas but just as easily could be related to brainstem glutamate
Right, it is the collection of these issues in one person that points only to MCAS, apparently. And I forgot to mention bronchospasms and probably a few other things (other muscle spasms too). Then there is the fact that almost all the symptoms were at one time diminished greatly by doing an MCAS protocol (not sure about the osteoporosis; have to wait until next year for a new DEXA scan).