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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Mast cell activation syndrome is not what it seems

frozenborderline

frozenborderline

Senior Member
Messages
4,405
Nettle said:
I went to a new dentist who told me my teeth were all looking good then took a look at the xray and said Hold on you've got peridontal disease. I have no visible receding gums or bleeding gums.

I have to go for three monthly cleans with the hygenist and use inter dental brushes every day.
I use a different brush in between the good areas and bad pockets so as not to spread the bad bacteria around. I dip the wee brushes in antibacterial mouthwash in the areas that are a bit smelly (indicating bad bacteria) and don't do this in the other areas as I don't want to kill the good bacteria. I also floss.

I've been chewing on the Japanese probiotic Miyarisan which i Believe has made a big difference. I don't believe all cases of MCAS are cause by this but worth ruling it out as it's quite an easy fix.
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Interestingly, @Hip has pointed out that one of the factors causing breakdown of collagen that could be at play in me/cfs, mcas , and cci, is mmp9 which is also found in gum disease, causing the gums to recede. Which is why low dose doxycyline has been used to treat gum disease , since it lowers mmp9
 
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MCASMike

Senior Member
Messages
126
I'm not sure I can definitely conclude at this point that it's all the fault of the autonomic nervous system. Would that include the skin rashes (sometimes I get a rash that lasts for 10 minutes or so, very red and very itchy, usually on the hands, arm, or face) Would that include itchiness at night all over the torso/face/arms/legs? How about the intolerance to a bit of heat? Anyway, I am now taking niacin and that seems to be helping (the nicotinic acid form), but I started with a very small amount to avoid flushing, etc. I'll update in a couple weeks or so about that.
 
bensmith

bensmith

Senior Member
Messages
1,547
How much help are yall seeing with mast cell work? I can never seen to move the needle(ourside of worse with really bad foods). I think it hurts my cci though.
 
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MCASMike

Senior Member
Messages
126
frozenborderline said:
Btw, this is my personal story of getting ill in podcast form, the former was me interviewing someone else about their illness
https://soundcloud.app.goo.gl/heCz

I recommend it. I forget if this is just one episode , or the whole playlist. Either way it could be a bit slow but has everything important
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Have you created a time line of symptoms, treatments tried, etc? That might lead to some insights. Also, have you tried the nicotinic acid form of niacin?
 
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lenora

Senior Member
Messages
4,926
Hello @frozenborderline .....I know you've been having a difficult time of things (along with your sister) and just read something that may be of use to you.

I'm sure there is a considerable difference in our ages, but I found this approach is what I ended up using (unknowingly) a very long time ago. If you go to the Health Rsing site, you'll find that a course is being offered by Dr. E. Stein, a psychiatrist in Canada who herself has been a victim of CFS/FM/ME & environmental problems.

There is a good introduction that was posted and I read through it. I found it to be an honest article about how to live with and come out the other end of these illnesses (not a cure, mind you).

I'm a patient, just like you, but I think there is some knowledge for you to gain in trying to counteract this illness. I wish that I could offer you more, but this is very good and Cort Johnson is an honest man who also suffers from our illnesses.

Check out Marylib @ Whitney Dafoe's site for severe CFS/ME. Best wishes to you and your sister. Better health for both of you. Yours, Lenora.
 
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frozenborderline

frozenborderline

Senior Member
Messages
4,405
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
 
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MCASMike

Senior Member
Messages
126
Well, I think people like me want relief of symptoms first, and then if there are some minor corrections to the textbooks, that would be fine with me. If your pulse rose to the 170s while seated and not doing much of anything, as mine did Friday, you might have this same view!
 
frozenborderline

frozenborderline

Senior Member
Messages
4,405
MCASMike said:
Well, I think people like me want relief of symptoms first, and then if there are some minor corrections to the textbooks, that would be fine with me. If your pulse rose to the 170s while seated and not doing much of anything, as mine did Friday, you might have this same view!
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I have extremely severe symptoms , including ones like this. My problems are very urgent. Inflammation from environmental causes, possibly including mast cell mediated, has literally caused permanent damage to ligaments requiring surgery, and I am desperate to stop it causing more damage. It also costs me a TN of money , limits housing. If I stayed in most average houses my heart rate would be well in the 170s resting. I have very urgent health crises related to mcas , but that doesn't mean I don't think about the theory. In fact , it makes the science de and theory more urgent for me bc I want to figure out what's happening inside my body and stop it. I'm not sure if you were implying that I don't want or need relief or have intense health issues solely bc I'm focused somewhat on theory. But it's certainly not true . I'm bedridden currently, the illness has ruined my life, and I may have to have a major surgery while homeless bc of it .
 
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MCASMike

Senior Member
Messages
126
Has any doctor diagnosed the ligament damage as caused by MCAS? I have never heard about that symptom. Is there a specific type of damage that was done to the ligaments? Do you have an idea about the mechanisms involved in that? Also, did you find anything that helped your tachycardia issue? Thanks and good luck!
 
frozenborderline

frozenborderline

Senior Member
Messages
4,405
MCASMike said:
Has any doctor diagnosed the ligament damage as caused by MCAS? I have never heard about that symptom. Is there a specific type of damage that was done to the ligaments? Do you have an idea about the mechanisms involved in that
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Many doctors are aware of this but I'm not sure there is a lot of formal study. Theo theoharides, anne maitland, Fraser henderson and paolo bolognese all discuss this in talks. I already linked an Anne maitland talk where she discussed this, but I suppose i could do a bit of digging to find more. But there's already tons of thread on it here. It's not just mast cells, but they can release tryptase or matrix metalloproteinases which damage connective tissue. See the attached image, or read @Hip s threads on it.

The damage is measured indirectly, in terms of the pathological mobility of the joints of c0-c2, but they also are doing a study doing biopsies of the ligaments.
IMG_20210704_150625_528.jpg
 
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hb8847

Senior Member
Messages
432
Location
United Kingdom
MCASMike said:
Well, I think people like me want relief of symptoms first, and then if there are some minor corrections to the textbooks, that would be fine with me.
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I too want relief of symptoms, I'm sure all of us do. But it's very important in what form that relief comes. It's no good if the medication that reduces MCAS symptoms inhibits your immune system so much that it allows whatever is triggering the Mast Cells to proliferate, you could end up with a far bigger problem down the line.
 
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