Mast cell activation syndrome is not what it seems

[frozenborderline]

Here is a paper that seems to support your explanation:

https://pubmed.ncbi.nlm.nih.gov/10458779/

I'm surprised there isn't more about this, as there is with a possible connection to EDS.

There's a ton of anecdotes and smart doctors saying there's a connection. Just not a ton of studies for the same reasons there's not a ton of studies in this area in general. I'm certainly not the first person to see a link, nor are the people I brought up.

 

[frozenborderline]

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.

FWIW I don't think this is a huge concern with antihistamines and most mast cell stabilizers. But some of the more hardcore immune suppressive drugs like corticosteroids and various chemo drugs used in mastocytosis , being used in mcas, is something I'm skeptical of in most cases. Or even xolair. But yeah stuff like ketotifen, cromolyn, loratadine etc is all pretty targeted , not overly broad immune suppression. Still not treating the root cause but I don't think of it as very harmful

 

[seamyb]

I like this post and think it applies to cfs more broadly.

We think of cfs as something that won't kill you. But cfs is a collection of symptoms.

And we think of PEM as a very special symptom, one that isn't seen anywhere else. But it's not really that special, functionally. The idea that the process of using energy can make you less energetic? It's very natural. And one can imagine a great many ways to break the system so that this "less energetic" is magnified horrifically.

Some with CFS may have underlying causes which will substantially shorten their lives.

 

[hb8847]

But yeah stuff like ketotifen, cromolyn, loratadine etc is all pretty targeted , not overly broad immune suppression. Still not treating the root cause but I don't think of it as very harmful

Well that's encouraging - I'm pretty early down my MC stabiliser path and it was something that worried me a bit. How have you gotten on with these medications?

 

[frozenborderline]

Well that's encouraging - I'm pretty early down my MC stabiliser path and it was something that worried me a bit. How have you gotten on with these medications?

It's a long story, pardon me for saying, but too long for the energy I have right now. They're often very good palliative meds though, and sometimes do more than just palliative stuff. I'm working on trying to get more to the root cause and that's a bit more complex , but I take extra of meds like this if I have to eat something bad or go in a bad building

 

[frozenborderline]

And one can imagine a great many ways to break the system so that this "less energetic" is magnified horrifically.

Some with CFS may have underlying causes which will substantially shorten their lives.

Yes more or less I agree with naviauxs "dauer" idea with a few caveats

 

[hb8847]

I like this post and think it applies to cfs more broadly.

We think of cfs as something that won't kill you. But cfs is a collection of symptoms.

And we think of PEM as a very special symptom, one that isn't seen anywhere else. But it's not really that special, functionally. The idea that the process of using energy can make you less energetic? It's very natural. And one can imagine a great many ways to break the system so that this "less energetic" is magnified horrifically.

Some with CFS may have underlying causes which will substantially shorten their lives.

Yeh, I think it's likely that something that is causing enough inflammation to leave you physically and cognitively impaired is likely to be causing you damage, even if that damage won't be lethal immediately. Like mould, for example, raises the risk of cancer, as does MCAS if I'm not mistaken. I'm sure there are a ton of risks, all the more reason to get it all figured out ASAP and help ourselves and hopefully prevent others from having to go through this shit in the future.

 

[hb8847]

It's a long story, pardon me for saying, but too long for the energy I have right now. They're often very good palliative meds though, and sometimes do more than just palliative stuff. I'm working on trying to get more to the root cause and that's a bit more complex , but I take extra of meds like this if I have to eat something bad or go in a bad building

No that's fine, I completely get it. And yeh, I'm pretty desperate to get to the root cause too, hopefully these MC stabilisers work well enough to try other treatments. My first port of call will probably be to try fixing the gut microbiome and then move onto treatment for mould which I've read are linked to MCAS. Best of luck with whatever you're working on.

 

[frozenborderline]

No that's fine, I completely get it. And yeh, I'm pretty desperate to get to the root cause too, hopefully these MC stabilisers work well enough to try other treatments. My first port of call will probably be to try fixing the gut microbiome and then move onto treatment for mould which I've read are linked to MCAS. Best of luck with whatever you're working on.

Besides sleepiness, which can go away surprisingly fast, and in my case was a benefit as I have horrid insomnia, most mast cell stabilizers I think are pretty safe and low in side effects. The otc version of cromolyn taken nasally, is better for me than oral prescriptions cromolyn as I don't mainly have a gut problem and it absorbs better systemically. For the other things I use either quercetin or chaga (antihistamine /mast cell stabilizer fungi) or ketotifen or cypriheptadine or rupatadine. Rupatadine and ketotifen are low on anticholinergic side 3effects, cyproheptadine had more of those but is still better than benadryl imo, and the anti serotonin effects actually help in cfs which we know may be due partially to excess serotonin and tryptophan . For whatever reason I tolerate all of the above better than benadryl and loratadine. Unfortunately they cost a bit more

 

[Pyrrhus]

From what I've read, MCAS appears to be a type of dysautonomia.

Generally speaking, mast cells can be degranulated by either biological threats OR by the autonomic nervous system. The autonomic nervous system can also increase the sensitivity of mast cells, without degranulation.

The classic example of mast cell degranulation due to dysautonomia is urticaria, commonly known as hives. In this case, dysfunction of the autonomic nervous system leads to degranulation of mast cells throughout the skin, despite the absence of a biological threat in the skin. (although there may be a biological threat elsewhere in the body)

Of course, if the dysautonomia is causing mast cells to degranulate, but you are taking mast cell stabilizing medication, the dysautonomia will fail to degranulate the mast cells.

Since it is common to find one type of dysautonomia alongside other types of dysautonomia, it should not be surprising that MCAS might appear alongside other types of dysautonomia.

Here's a new-ish paper that suggests that MCAS and POTS sometimes occur together:

Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association
https://www.ahajournals.org/doi/full/10.1161/JAHA.121.021002?s=09

The study comprised 69 patients who met POTS diagnostic criteria. In 44 patients (44/69, 64%) additional non-orthostatic symptoms included migraine, allergic complaints, skin rash, or gastrointestinal symptoms. Of these 44 patients, 29 (66%) exhibited at least 1 laboratory abnormality suggesting [MCAS], and 11/29 patients had 2 or more such abnormalities. Elevated prostaglandins (n=16) or plasma histamine markers (n=23) were the most frequent findings. Thus, 42% (29/69) of patients initially diagnosed with POTS exhibited both additional symptoms and at least 1 elevated biochemical marker suggesting [MCAS].

 

[lenora]

Thanks, Pyrrhus.....POTS is way behind me (thank goodnes, and while I do have severe allergies, I've not had uriticaria...at least to the best of my knowledge. The NasalCrom seems to be helping with the allergies, but I'm still outside as much as possible.

Interesting to read about....especially for those with these conditions. Thanks,Lenora.

 

[SWAlexander]

Does Mast Cell Activation Explain IBS (and Fibromyaglia and ME/CFS?)
https://www.healthrising.org/blog/2...on-ibs-fibromyaglia-chronic-fatigue-syndrome/

Excerpt:
Could this general model help explain ME/CFS, FM, POTS, and long COVID? Might the endothelial cells lining the blood vessels in ME/CFS/FM and long COVID present a similar scenario? A different pathogen disrupting the protective layer lining another important roadway in the body? Time will tell but one thing is for sure – mast cell activation syndrome (MCAS) – long ignored by the traditional research community – has just been shown to provide a plausible answer for a medical mystery.

Could activated mast cells be tweaking the nerves in FM? Something is doing that, after all, and that something has not been identified. Nor does that something, similar to IBS, appear to be producing much of a systemic reaction or causing any tissue swelling or damage. Instead, in its hidden way it’s going straight for the nerves. It’ll be interesting to see if this IBS study sparks studies that start looking for mast cell activation in FM.

At the 2018 Dysautonomia Internationa Conference Brent, MD. asserted that the gut problems in POTS were caused by mast cell activation syndrome (MCAS) and described how a panoply of treatments returned a very ill POTS/MCAS/IBS patient to health.

 

[Irat]

I m diagnosed with MCAS,POTS an dystautonomia....since 3,5 years I have been down to 3 foods ,my reactions were anaphalaptik,flu like symptoms and lymph nodes swelling etc. I have started brain retraining and vagus nerve stimulation few weeks ago and for now working only with it at my food sensitivities,It works ,I could introduce every week another food without any reaction.

I have hope again

 

[YippeeKi YOW !!]

I have hope again

Hope is the fuel that most of us run on, so that's really good news @Irat ....

 

[SWAlexander]

Mast cell activation symptoms are prevalent in Long-COVID
Abstract
Objectives
Hyper-inflammation caused by COVID-19 may be mediated by mast cell activation (MCA) which has also been hypothesized to cause Long-COVID (LC) symptoms. We determined prevalence/severity of MCA symptoms in LC.
Methods
Adults in LC-focused Facebook support groups were recruited for online assessment of symptoms before and after COVID-19. Questions included presence and severity of known MCA and LC symptoms and validated assessments of fatigue and quality of life. General population controls and mast cell activation syndrome (MCAS) patients were recruited for comparison if they were ≥18 years of age and never had overt COVID-19 symptoms.
Results
There were 136 LC subjects (89.7% females, age 46.9 ±12.9 years), 136 controls (65.4% females, age 49.2 ±15.5), and 80 MCAS patients (85.0% females, age 47.7 ±16.4). Pre-COVID-19 LC subjects and controls had virtually identical MCA symptom and severity analysis. Post-COVID-19 LC subjects and MCAS patients prior to treatment had virtually identical MCA symptom and severity analysis.
Conclusions
MCA symptoms were increased in LC and mimicked the symptoms and severity reported by patients who have MCAS. Increased activation of aberrant mast cells induced by SARS-CoV-2 infection by various mechanisms may underlie part of the pathophysiology of LC, possibly suggesting routes to effective therapy.

 

[frozenborderline]

Very relevant podcasts

https://soundcloud.com/headlessyouthpodcast%2Fsets%2Forigin-story

 

[physicsstudent13]

I have the most serious and painful case of MCAS I have seen. it can be deadly in my case in causing repeated anaphylactic shock and damage to the heart and brain and lungs and kidneys

 

[lenora]

Yes, that does sound serious. I hope you have a LOT of epi-pens around....it often takes quite a few. Yours, Lenora

 

[wolves2626]

Mast cell activation symptoms are prevalent in Long-COVID
Abstract
Objectives
Hyper-inflammation caused by COVID-19 may be mediated by mast cell activation (MCA) which has also been hypothesized to cause Long-COVID (LC) symptoms. We determined prevalence/severity of MCA symptoms in LC.
Methods
Adults in LC-focused Facebook support groups were recruited for online assessment of symptoms before and after COVID-19. Questions included presence and severity of known MCA and LC symptoms and validated assessments of fatigue and quality of life. General population controls and mast cell activation syndrome (MCAS) patients were recruited for comparison if they were ≥18 years of age and never had overt COVID-19 symptoms.
Results
There were 136 LC subjects (89.7% females, age 46.9 ±12.9 years), 136 controls (65.4% females, age 49.2 ±15.5), and 80 MCAS patients (85.0% females, age 47.7 ±16.4). Pre-COVID-19 LC subjects and controls had virtually identical MCA symptom and severity analysis. Post-COVID-19 LC subjects and MCAS patients prior to treatment had virtually identical MCA symptom and severity analysis.
Conclusions
MCA symptoms were increased in LC and mimicked the symptoms and severity reported by patients who have MCAS. Increased activation of aberrant mast cells induced by SARS-CoV-2 infection by various mechanisms may underlie part of the pathophysiology of LC, possibly suggesting routes to effective therapy.

not only covid 19. no one is aware of the damage that mrna vaccines caused. not only mcas, small fiber neuropathy, fnd, heart issues hormonal problems like irregular periods of women. some doctors amd foundations consider both having covid 19 and post vaccine illness are the same and melted in the same pot.
there are protocols here. May be unshared in the forum. if shared you can remove the link or if it is forbidden.
https://covid19criticalcare.com/

 

[Solitude]

Many doctors present mast cell activation syndrome as if it's a syndrome where someone mast cells are on high alert for noreason, or for an idiopathic and possibly genetic reason, and so they get triggered by totally harmless things and cause issues.
In my opinion. Nobody knows enough about mcas to tell anyone why their mast cells are reacting, and what they are reacting to. Not even the best doctors. While some "mast cell activation syndrome triggers" are harmless, some arent. And since we are exposed to thousands of harmful chemicals in this day and age our response should be to dig deeper and not assume that the mast cell activation is the main problem rather than a symptom of a deeper problem. Sure, your body reacts to some harmless stuff like pollen, but it's probably so inflamed and unregulated bc of something worse... and the pollen and relatively harmless foods are the collateral damage when its primed by something very nasty. So imo this requires a lot more study. One could also view mcas as one part of a broader innate immune system response to toxins when the adaptive immune system fails, possibly due to low immunoglobulins

My experience: genetic SNP > inability to have a proper metabolic balance for many years since you were born > growing inflammation in your body > growing fatigue > growing stress > more growing inflammation and stress > potential leaky BBB > toxins in the brain > more fatigue and mind fog > development of MCAS > possible autoimmunity response > hypersensitivity to every substance you eat or breath. DESCLAIMER: This is just my educated guess.