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Unimproving MCAS

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Posted 10/14/2020 1:49 PM (GMT -5)
Has anyone overcome extremely severe MCAS? For me it's just unrelenting. Even if I am perfect and have next to no triggers, one trigger by accident and im all the way back again. My doc is trying to get me IVIG for this but it hasn't been approved yet. I have treated lyme, bart, babesia and mold for years now and it hasn't improved. Has anyone overcome this situation? I dont know what else to apply
Posted 10/14/2020 2:00 PM (GMT -5)
Aerose, I am so sorry. MCAS has to be one of the most frustrating things because there are just so many triggers! Have you tried cromolyn sodium, DAO, strict low-histamine diet - all the standard stuff to try? Which things have helped? I am hoping that some things have helped a little? Which triggers are the worst for you?
Posted 10/14/2020 9:05 PM (GMT -5)
I'm on aol of those plus H1 and H2 blockers, quercetin, vit c and inositol. If i intake a trigger they have no effect. I hahe many offending foods- almost everything tbh. My worst are chocolate, fermented foods, coconut, avocado, and breathing in certain fumes. Smoke, really.

They antihistamines and stabalisers help a little but there is no significant, sustained improvement from them :/
Posted 10/15/2020 10:19 AM (GMT -5)
This website has a fairly good list, heavy on the pharma side: https://www.mastattack.org/2014/10/mcas-treatment/ Have you looked around that website at all? Very interesting.

Is your MCAS diagnosis strictly clinical, or do you have bloodwork supporting it as well? I wonder if something else is at play (instead or in addition) given how much you have tried with so little relief. Maybe you are reacting to a medication or supplement that you take every day, or mold or a toxin in your environment, and the continued exposure is not letting your mast cells chill despite the meds and supps?

I know this must be so frustrating.
Posted 10/15/2020 2:36 PM (GMT -5)

Zbreezy said...
Aerose and Saraeli, do you find relief from detoxing or any other means when its' triggered?

What DAO supplement does everyone use or recommend? When I looked a year ago there was one or two options on amazon and they were pricey.

Thanks for the link Saraeli very helpful!

Detoxing is the only thing that ever lessens it. However thats only temporary until I eat next, then all benefits are gone. The only thing that will keep me from flaring is fasting, but that I can only do in a limited manner.
Posted 10/15/2020 4:42 PM (GMT -5)
Aerose,

I am so sorry you have not gotten more useful help and answers for all the time and money you’ve spent.

I know Dr M sort of specializes in MCAS. Did he offer any explanation for why you continue to have this so bad if he said you cleared bartonella?

It just seems like someone should be able to identify the root of your afflictions and help you get out of this mess.

Did you do a Great Plains MycoTox test? That will tell you if you have mycotoxins from past or present exposure.

Are you still nomadic? If you travel down the east coast through GA, I would be glad to sniff out your truck and possessions to see if I react to anything, LOL!!! I am pretty sensitive to mold and mycotoxins, even more so than the mold dog I had to come check the house. I wouldn’t charge you anything☺️

Post Edited (WalkingbyFaith) : 10/15/2020 3:46:42 PM (GMT-6)

Posted 10/15/2020 8:34 PM (GMT -5)
That's funny, detoxing makes me worse. Anything that mobilizes toxins makes me feel worse because it seems to pull more things into the mix, for me. (This is true with or without an MCAS flare, really.) Extra water and lots of veggies are my only detox "tools" that don't make me feel worse. Alka Seltzer Gold doesn't make me feel worse, but it messed up my electrolytes terribly once, so I am wary of using more than just occasionally.
Posted 10/16/2020 5:11 PM (GMT -5)

Aerose91 said...

Detoxing is the only thing that ever lessens it. However thats only temporary until I eat next, then all benefits are gone. The only thing that will keep me from flaring is fasting, but that I can only do in a limited manner.



What do your flares look like, what are the symptoms?
Posted 10/17/2020 2:57 PM (GMT -5)

dcd2103 said...

Aerose91 said...

Detoxing is the only thing that ever lessens it. However thats only temporary until I eat next, then all benefits are gone. The only thing that will keep me from flaring is fasting, but that I can only do in a limited manner.



What do your flares look like, what are the symptoms?

Increased derealization, light sensitivity, irritabioity, cognitive loss, anger, muscle weakness, POTS, paranoia, delusions and sometimes all the way to psychosis
Posted 10/17/2020 3:07 PM (GMT -5)

WalkingbyFaith said...
Aerose,

I am so sorry you have not gotten more useful help and answers for all the time and money you’ve spent.

I know Dr M sort of specializes in MCAS. Did he offer any explanation for why you continue to have this so bad if he said you cleared bartonella?

It just seems like someone should be able to identify the root of your afflictions and help you get out of this mess.

Did you do a Great Plains MycoTox test? That will tell you if you have mycotoxins from past or present exposure.

Are you still nomadic? If you travel down the east coast through GA, I would be glad to sniff out your truck and possessions to see if I react to anything, LOL!!! I am pretty sensitive to mold and mycotoxins, even more so than the mold dog I had to come check the house. I wouldn’t charge you anything☺️

Hahaha. Thanks so much for the offer! I am still nomadic and hope to be back in GA at some point because I love Savannah.

Dr M put me on a bunch of antihistamines and antioxidants but they either did very little or I reacted to them (vitamin c for example) He seemed to think something else was still driving it but we never found what.
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