Best Safe Treatments for MCAS Mast cell activation syndrome

[physicsstudent13]

I know they really screwed us if they gave us this group of rare autoimmune diseases for life called MCAS or other autoimmune diseases. But we must fight on and find treatments that are safe.
I know that the other vaccine injured patients are also having shooting pains in the same places, the back of the brain, the neck, and upper back
Has anyone found treatments that are safe?

 

[sunshine44]

I am having improvements with moringa powder (contains quercetin) and Heart & Soil Immune Histamine formula (beef organs, DAO, etc). I also use some histamine healing frequencies. I was a pretty severe case and have a ways to go but certainly having improvements.

 

[physicsstudent13]

Yeah I have tried the moringa powder a few times. I am also looking at histamines

 

[LINE]

Antioxidants are always going to be supportive. I use wide spectrum approaches including Moringa but also rich polyphenols such as turmeric, paprika etc. Vitamin C is one of my foundations.

 

[linusbert]

no plant extracts are working for me, making things even worse, much worse. (i suspect salicylate or another plant poison being highly concentrated in plant extracts) normal vitamin c powder also doesnt work for me.
capers (extract) is rich in quercetin. i have not found a source of vitamin C for me.
vitamin D may work for some?
lactoferrin has some research to directly suppress MCAS activity.

 

[LINE]

no plant extracts are working for me, making things even worse, much worse. (i suspect salicylate or another plant poison being highly concentrated in plant extracts) normal vitamin c powder also doesnt work for me.
capers (extract) is rich in quercetin. i have not found a source of vitamin C for me.
vitamin D may work for some?
lactoferrin has some research to directly suppress MCAS activity.

Do you think you are methylating properly?

 

[linusbert]

Do you think you are methylating properly?

probably not. maybe. i dont know.
but some b-vitamins seam to make it worse as well. i am trying methylfree b complex now but dont know yet if that makes a difference.
the methylfree b complex comes without any folate. therefore i need to take synthetic folic acid.
i took for years now like 50-100% RDA of vitamins in the bad methylfree common cheap forms they put in nutrition. i didnt feel that had any impact. but if i take my "good" b complex with active vitamins also just 100% RDA things get worse with asthma.

there is also the risk of permanent acquiring new allergies/sensitivities when i do things like this. pantethine seams to be strong in this.
maybe its a sulfid thing? but i didnt make that realization on eggs and those are big sulfur.

the problem is i am sensitive to soo many things, i cannot say if it are even the vitamins. i made the experience that sometimes i tolerate the same vitamin from one brand and the other not at all, like the vitamin k2mk4 story recently. and you never now what kind of residue is in your stuff. they do not declare everything, and sometimes it could be the invisible things.

EDIT:
in one blood sample i noticed i had very high SAMe blood levels, and i didnt supplement anything at that time. especially SAMe i do not take.
but this was years ago, at a time where my allergies/asthma/sensitivities werent that bad, also my health in general was much better.




also this article gives conflicting information, in one case methylation makes it worse, in another better.
https://selfdecode.com/app/article/allergies-asthma-methylation/#recommendations
the mentioned gene i am A/G , so i have one risk allele but thats actually rather common and not so much of a impact.

 

[LINE]

Everything that I have read and experienced is that everyone is quite individual in terms of responding to given substances. I do quite well with pantothenic acid, b2, b6 and choline with inositol. Of course, that does not mean that I do not need to other b vitamins. I use a little methionine, taurine and NAC from time to time.

For myself, I addressed liver toxicity or as Traditional Chinese Medicine calls it, Liver Stagnation. This seemed to help me. The Chinese have a few diagnoses for the liver but they classify stagnation as a Western living event due to the high stress, environmental chemicals etc. When the liver has stagnation, then it is unable to process other substances correctly.

Glutathione plays a key role in liver detoxication but more importantly, it is very involved in immune function. So as an immune response goes up, then glutathione levels are lowered. I believe it is the lower levels of glutathione that contribute to stagnation. Many practitioners believe that when the liver cannot process correctly (sensitivities) then it can be due to a burdened liver, that is why I asked about methylation.

*I did some other treatments besides methylation for liver stagnation.

 

[linusbert]

For myself, I addressed liver toxicity or as Traditional Chinese Medicine calls it, Liver Stagnation. This seemed to help me. The Chinese have a few diagnoses for the liver but they classify stagnation as a Western living event due to the high stress, environmental chemicals etc. When the liver has stagnation, then it is unable to process other substances correctly.

i have great respect for the traditional chinese medicine. also for other cultures traditional methods of healing / treating disease. as those are based on observation and success of treatment.
where as "school medicine" ...

Spoiler: rant about medicine

is known for rap*ing its own patients with the worst malpractices even possible... masquerading as "sCiEnCe". lobothomy, aderlass, phrenology, electro shock therapy... modern psychotherapy and psychosomatic... it never ends, they come up with always new ideas and methods to torture patients and make them worse... and then gaslighting them.

therefore i definitely trust TCM explanations for symptoms so that they got the correlations correct. i do not trust their methods in treatment in every regard... like eating elephant horns and stuff... not my thing.


methylation does me dirty.
SAG i didnt try in a long time, does s-acetyl-glutathione help with liver toxicity? i am thinking about giving SAG another try, but its sooooo freakin' expensive.
though i fear that methylators and sulfur containing things make my asthma and allergies worse. so not sure about that yet.

 

[perchance dreamer]

In Chinese medicine, a purple tongue can indicate stagnation. Recently, I had all kinds of lower digestive problems, and I noticed my tongue was very purple. When I got better, the purple went away.

 

[vision blue]

@linusbert How are your homocysteine levels?

I too have mast cell issues and sensitivities- not sure i realized you do strongly as well

 

[linusbert]

@linusbert How are your homocysteine levels?

I too have mast cell issues and sensitivities- not sure i realized you do strongly as well

i dont know HCY right now. a few years ago when already sick it was low.

yea this MCAS or histamin or whatever issues are nuts. i have slowly progressing more and more allergies to more and more things i wasnt allergic ago. inclunding occult things like rubber, silicone or even metals.
i noticed once that my nose washing gave me nasal irritation because of the mineral rich salt i used.
my symptoms are mostly shown in worsening of asthma.

right now if i take supplements its like fuel on fire for the asthma.
usually my muscular symptoms would go worse, which lead to a stop of supplementing. but the last year its the asthma sympthoms.
its so annoying. i need to stop it and i cannot do anything.

 

[physicsstudent13]

autoimmune diseases are horrible torture for me every day now. they do present also complexly like with gout and arthritis.
one of my lupus panels was weakly positive

 

[Norwegianlad]

autoimmune diseases are horrible torture for me every day now. they do present also complexly like with gout and arthritis.
one of my lupus panels was weakly positive

did you find anything that helped you

 

[Galixie]

I know they really screwed us if they gave us this group of rare autoimmune diseases for life called MCAS or other autoimmune diseases. But we must fight on and find treatments that are safe.
I know that the other vaccine injured patients are also having shooting pains in the same places, the back of the brain, the neck, and upper back
Has anyone found treatments that are safe?

You probably already know this, but MCAS is not an autoimmune disease.

Autoimmune diseases involve the Adaptive immune system. Mast Cells are part of the Innate immune system. Unlike in autoimmune diseases, where the adaptive immune system incorrectly attacks parts of the body that aren't invading pathogens, mast cell degranulation is a normal bodily function releasing chemicals in response to various triggers.

The difference between mast cells in a normal immune system versus MCAS is that, in MCAS, degranulation is trigged by substances or situations that should not normally trigger mast cell degranulation. As an aside, Mastocytosis is also not an autoimmune disease. It's a myeloproliferative disorder that results in too many mast cells. In MCAS, the number of mast cells remains normal, they just behave abnormally.

On treatments, oral Ketotifen was the thing that did the trick for me. Over the counter antihistamines weren't enough to stop the incessant itching, but ketotifen worked. I managed to get fairly stable and am currently taking a break from taking antihistamines or ketotifen. I still occasionally have mast cell reactions, but I've been able to manage them as they happen instead of having to take daily medication.

 

[perchance dreamer]

Oral Ketotifen has helped with my chronic allergies and stopped the rashes I would get occasionally get out of the blue. I find it sedating, so can only take it before bed.

Before I knew about Ketotifen, an ENT had suggested Singulair for MCAS. I looked at the FDA-required black box warnings for Singulair and said no thanks.

 

[linusbert]

is there any bloodwork which suggest that ketotifen is a thing i should do?
after eating certain things, like any plant extract or plant juices i get an increase in allergies to against everything as well as more asthmatic potential to react to things.
i also seam to have a hidden late phase reaction which does things on a systemic level which i cannot describe.
i want to fix this

@perchance dreamer i like your profile pic