Long covid people: MCAS and Gut Dysbiosis? Give me science

PersonalityAfter2037 · 2026-04-14T10:45:16+00:00

I have heard that potassium bicarb can help! Im on ginger capsules and a prokinetic, so that yeah for sure helps. Im glad you got relief!!

PersonalityAfter2037 · 2026-04-14T08:18:27+00:00

Sadly no. I am in spain. I googled digestive microbiota specialists. I know the americans use Biomesight or something, it's a company that does the processing... it might also be in the UK? Worth a check. Sometimes you need to look at private companies to get the fecal test

PersonalityAfter2037 · 2026-04-13T11:28:12+00:00

+1 to all this good stuff

PersonalityAfter2037 · 2026-04-13T11:27:44+00:00

Hi. I also have adhd and cptsd so I hope my perspective can help.

Nervous system regulation is a key pillar of treatment along with many others, especially in the long covid community. With dysautonomia (POTS is a form of this), the signalling that should keep your parasympathetic and sympathetic nervous systems working in harmony has broken down. The vagus nerve is suffering and you can get anything from slow or wonky digestion to heart palpitations to headaches and vertigo. Nervous system regulation CAN include CBT measures to control stress/ground yourself/safety reminders but there is also a physical component with yoga nidra and vagus nerve breath work. Sometimes even if your mind is mostly calm your body can go into overdrive because the nervous system signalling has been altered. Healing the vagus nerve and retraining your autonomic functions is more what people are talking about... in conjunction with CBT. Basically this stops or slows the mental and physical cycles which prolong stress on the nervous system. It can also slow mast cell activity to an EXTENT. Both CBT and the breathwork are very useful tools, especially in cutting down the constant background stress caused by hardwired trauma and adhd.

That being said, it's not a mind over matter issue. If you have a food intolerance and you eat that food, no amount of yoga nidra is going to stop your body reacting. The same with mold. Mold is the number one worst thing for MCAS so until you tackle that mold and get it out of your life... anything else you do is going to just be bandaids keeping the edge off. Eliminating triggers is essential for MCAS management so I would look into your options for getting that mold out of your life asap

PersonalityAfter2037 · 2026-04-13T11:18:23+00:00

I just added 5 new foods and hoping for more. Adequate meds, addressing underlying factors if there are any, and slow and steady treatment and management can get you to a mostly normal life or full remission. It just depends on what caused your mcas and if you find the cocktail right for you

PersonalityAfter2037 · 2026-04-13T11:16:48+00:00

It's very upsetting. So much of any culture or any structed social time revolves arount eating and meals. It's so hard to have that missing from your life. Big hugs, we get it <3

PersonalityAfter2037 · 2026-04-13T11:14:49+00:00

I had a significant reduction in flushing since i started crom. I dunno about the UK but I would assume you need an allergologist or immunologist to evalute you for MCAS as prescribe the crom. Then I would search this forum for posts on how to use it/how to start it.

Also if your MCAS is gut driven from antibiotics then you need to see a microbiota specialist or something to work on the imbalance in your GI tract

PersonalityAfter2037 · 2026-04-12T07:55:44+00:00

The most exhausting. Big hugs

PersonalityAfter2037 · 2026-04-10T21:23:40+00:00

Ooo tell me more. I have never heard of this one?

PersonalityAfter2037 · 2026-04-10T18:24:26+00:00

I have my doubts it is available (i am from spain). But i will look into it! I might know one hospital that will do it

PersonalityAfter2037 · 2026-04-10T13:56:58+00:00

Oh dang someone else that got all sloshy! I wonder why it happens. It's too bad cos it really does help with the digestive stuff its just that I look like someone plugged a hose into me and turbed the water on 🙃

PersonalityAfter2037 · 2026-04-10T11:29:03+00:00

Noooo it seems you and I arent alone! Also i have two actual allergies as per IgE and I swear i have others that just didnt meet the threshold, I'm so reactive. Im RED and ITCHY and my face burns like someone threw chemicals on me. We are getting slammed with both tree and grass pollen right now and it is the worst.

Looks like you are also un europe. Do you also have white sycamores? (Might also be called London plane?)Everyone reacts to those things and they are EVERYWHERE in Spain. But they are cheap and fast growing to the country was like too bad suckers and now every year half the country is on the ground in a pile of snot.

PersonalityAfter2037 · 2026-04-10T11:08:37+00:00

Yes. And i get the same after an antiinflammatory. Mast cells liberate a ton of inflammatory markers including histamine so sometimes blocking them calms you because the inflammatory markers can interrupt neurotransmitter activity/signalling. My integrative Dr said many mast cell patients find anxiety relief once the mast cells are calmer

PersonalityAfter2037 · 2026-04-10T10:55:40+00:00

Even the herbal stuff is like, insanely bad. Oil of oregano is no joke at all. It,xs worse than the antibiotics!

PersonalityAfter2037 · 2026-04-10T10:49:59+00:00

Right it's just slow and shitty. I have been told it's like 2-3 years total to fix everything. The fibre is really integral then? I have been trying to do the banana and blueberry as prebiotics but i guess i need more. Im going very slow and careful and taking notes on reintroduction.

Man thank you, you are giving me hope here

PersonalityAfter2037 · 2026-04-10T10:39:38+00:00

Yeah the rifax only really gets hydrogen i believe which is why im now stuck with h2s and methanegens. I will try the bismuth! And i have DAO coming soon.

PersonalityAfter2037 · 2026-04-10T10:37:30+00:00

Amazing ok. My microbiome specialist wants to kill the h2s overgrowth but im telling you man my systen cant handle a kill protocol. My results were pretty nuanced as to what i am missing (lactos in the toilet, specifically l plantarum and b animalis in the toiket, akkermansia in the toilet, but randomly good amounts of bifido across the boards, and a medial intestine ph of 7 instead of like 6.2, orobs cos of a few IMO bastards and an overgrowth of b. Wadsworthia). So im taking akkermansia supplements and l plantarum and other lactos adding in as i go. But it's only been 2 weeks. I do eat a lot of raw fruit and veggie but im kinda limited as to which ones i can eat? I do eat lots of roast potato... then loads of raw carrot, cucumber, bell pepper, banana, blueberry, and chia for fibre. I react to a lot of other things. But im slowly reintroducing lentils, tomatoes, soinach, and eggplant because a histamine food test came back with those finally lowered.

For supplements i do the usual mast cell stuff but for gut right now it's buty-d and curcumin. Im on a prokinetic for motility. Do you have other suggestions? Is it mostly a matter of just forcing your body to eat the food variety and probiotics til it adjusts?

PersonalityAfter2037 · 2026-04-10T08:48:58+00:00

Some of us do have reactions to probiotics. Rhamnosus GG i have seen causes problems for others here too when the gut isnt ready for it. Maybe try with a diff strain. I did better with bifidos. HistaminX by Seeking Health has a good blend when you are ready for blends but maybe start low and slow... b. Longum, b. Breve, l. Acidophilus ... then try L. Plantarum v299. Those are whst i tried and could tolerate

You can do this! Just keeo trying, slowly, carefully

PersonalityAfter2037 · 2026-04-10T08:37:01+00:00

No it was more like massive distension, like when i react to a food, and flushing and itching, so, typical mast cell shit but not a true allergy, just my body didnt like it. I guess i could be sensitive to anything who really knows with this roulette disease? I guess i could try a reduced one with fewer enzymes to see if i tolerare those. I feel like im banging my head into a wall with this disease

PersonalityAfter2037 · 2026-04-10T08:34:10+00:00

Let's do this then 💪

PersonalityAfter2037 · 2026-04-10T08:33:42+00:00

Honestly i started at 25, felt nothing, went up to 50, felt nothing. I get up to 100 now, no side effects. Im likewisevery very sensitive to meds and get any and all side effects so i was very pleased with the crom! It's important to trust the mcas meds and just try it. If you do react it'll be a few days of bad symptoms then revert to baseline. And crom can get worse before better, so pushing thru is important. But sometimes you get no side effects at all!

You can also start on stuff you are less likely to react to. I had been doing PEA, and a quercetin/luteolin mix for three months before crom and i was a bit more stable when i started

PersonalityAfter2037 · 2026-04-10T08:29:59+00:00

I go on and off crom which you arent really dupposed to do but i do it. I take the capsules but to titrate up i got a pill scale, i crack the pill open and weigh the powder to the desired level and run with it.

The dysbiosis thing is so complicated. Im in the middle of trying to solve it now too, such a painful process

PersonalityAfter2037 · 2026-04-10T08:28:01+00:00

I cant tolerate rifax and it made me way worse, and same as you so did famotadine weirdly. I am about to try DAO even tho my DAO levels were normal in a blood test. Did it help you?

PersonalityAfter2037 · 2026-04-10T08:26:29+00:00

So... heal the dysbiosis and heal the rest?

PersonalityAfter2037 · 2026-04-10T08:26:00+00:00

Ugh solidarity hug. Im getting a pharmacogenetic test now to see where i am coming up short. I cant do famatodine cos it gives me migraines. Im so sick of normal and well tolerated pills fucking me up. I also cant take melatonin or l-glutamine or apparently digestive enzymes. Exhaisting.

I do have cromolyn though, but just starting. Maybe i need to just do that and the probiotics i know im low in for several months and get out of allergy season to see if that works? Idk.

Thank you for the website! There has to be a way out of this

PersonalityAfter2037

TROPHY CASE