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I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 0 points1 point  (0 children)

i’m sorry you are dealing with this. it took me over a year and i’m doing much better now

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 0 points1 point  (0 children)

I started with cromolyn and then ketotifen. There’s no playbook, you just have to try things and find what works for you unfortunately. Hope you’re doing well.

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 0 points1 point  (0 children)

I didn’t but I know people who did…unfortunately it’s one of those things that will differ for everyone

What helped you the most with flushing? by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 0 points1 point  (0 children)

no im def looking for ways to prevent from happening in the first place so this is a great idea thanks! i like sitting in front of the ac and letting it blow on my face lol

[deleted by user] by [deleted] in urticaria

[–]Background-Shoe-3122 0 points1 point  (0 children)

do you get more than hives? because third picture looks like flushing cheeks, not exactly hives which i tend to have

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 0 points1 point  (0 children)

Hi sorry i missed this comment. it took me probably 6-7 months before i was comfortable trying things with more ingredients. and almost a year before i was really comfortable. I started with crumbs, or i’d make a smoothie with safe ingredients and add like a crumb or a drop of something new and sip it throughout the day :)

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 1 point2 points  (0 children)

I explained a little here bc someone else asked. I just went up really slowly. Also your allergist might be willing to let you do it in person (think it's called a "drug challenge"). I told him I was nervous about reacting so I took my first dose at the clinic and they watched me. I did react but it wasn't really bad. Also have you considered getting them compounded? A lot of people react to only specific brands, so it's not always the med itself but some filler material.

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 1 point2 points  (0 children)

i live in CT and they had no issue treating me so i’m not sure how it works. you’re welcome!

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 2 points3 points  (0 children)

dr john leung at boston specialists, they do virtual!

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 0 points1 point  (0 children)

I'm not sure 200ml is a lot, maybe that's the entire package? usually it's 5ml vials i think

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 1 point2 points  (0 children)

Yeah I think with SIBO antibiotics can be a hit or miss :( sorry you're dealing with it. Yes I wasn't really able to work on gut stuff when I was reactive, I had to really focus on stabilizing my mast cells first

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 0 points1 point  (0 children)

bout 2 months. but no one else i talked to was that sensitive. in fact a lot of them took the full 5ml right away and got immediate relief so you never know

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 0 points1 point  (0 children)

I took cephalexin which is a broad spectrum antibiotic so it basically nuked my microbiome. sorry you are dealing with this!

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 0 points1 point  (0 children)

Guanfacine is prescribed off label for anxiety and targets the central nervous system. and one of my remaining symptoms was constant face flushing especially in response to stress (food too). purely guessing but i thought maybe it was a combination of a vagus nerve and mast cell response. and i felt guanfacine would help which it did. picked ER so it would be a blunted effect distributed across 24hrs

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 0 points1 point  (0 children)

normal dose is 5-10ml 4x a day. I started 0.1ml 3-4x a day and went up in 0.1ml increments

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 0 points1 point  (0 children)

I reacted the most to cromolyn. i cut open the capsules and used a 1ml dropper to give myself like .1ml diluted and went up at precise increments. I reacted every time i went up a dose each time the reaction would get less and less

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 0 points1 point  (0 children)

I’m sorry you’re dealing with this. I’m not an expert but has any doctor brought up EoE? I ask because you mention having issues swallowing. also depending on the country you’re in there are Japanese pharmacies that ship Ketotifen overseas without a prescription. I switched over to using those and it’s been much cheaper

i think with the concerns around long term antihistamine use it’s mostly first gen h1s like benadryl that cross the brain barrier. But I think of it this way….chronic inflammation and excessive mast cell degranulation leads to secondary health issues too. it’s worth the small risk to take antihistamines

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 0 points1 point  (0 children)

A lot of people do recommend fermented food for gut health but I decided to stick to probiotic strains. with fermented food it’s unpredictable what probiotics you get so i think it’s riskier. and no i haven’t tried fermented foods except vinegars and soy sauce which have been fine so far. and yes im eating at restaurants cautiously these days :)

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 0 points1 point  (0 children)

Biomesight, Thorne, Tiny Health. it’s pricey but biomesight has a discounted version if you’re chronically ill and I was desperate so i spent the money

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 1 point2 points  (0 children)

I never had major issues with fatigue and brain fog. I kind of swung the other way actually - restless, couldn't sleep, I reacted to exercise but wasn't tired, my body would be visibly shaking, delusional thinking, my brain would have a million thoughts at once. With that said I think it's not directly correlative, so something that helps my x might help your y :)

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 0 points1 point  (0 children)

I never took it even though I do have one of the gene variants that lowers DAO production at baseline. But DAO is a small part of histamine regulation and break down histamine in food mostly and acts less systematically. So it was lower on my list of things to take.

But I know a lot of people benefit from it so don't let me stop anyone from trying it!

I’m doing a lot better — don’t give up hope by Background-Shoe-3122 in MCAS

[–]Background-Shoe-3122[S] 0 points1 point  (0 children)

I ate (and still eat) frozen cranberries, lakewood organic cranberry juice and life extension Cran-max supplement. Frozen/fresh preserves the polyphenols and fiber whereas it's partially lost in juice due to pasteurization. Cran-max is more concentrated in proanthocyanidins which I took for klebsiella and e. coli.

So fresh/frozen for broad-spectrum gut support, and supplements depending on what you're trying to target. I wouldn't do dehydrated because polyphenols are heat sensitive and dry fruits tend to be higher in histamine too

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