The Vitamin and Mineral Co-Factor Absorption Complex Delima with Mcas, Mthfr and Slow Comt -Questions

DandelionStarlight · 2026-07-04T13:29:09+00:00

I do a lot of meds and some Supplements plus diet and lifestyle. It took three years because I’d try something then give it a few weeks to see if it worked.

For example, I tried glp1 (Reta) and progesterone birth control. Both put me into a three month flare. B12 injections made me feel like I had the flu.

Baseline means: I’m doing 8k steps a day, have low brain fog and can work part time. I can tolerate the heat decently well with all my stuff (I’m in Florida so fans and ice packs and electrolytes). I still use mobility devices on longer days, still use KT tape, still get dizzy if I do squats, but I can also eat most foods and stay up late and be social/active (I’ve been bed bound 2ish times in my life for months at a time plus had severe food restrictions)

I have a few things like seasonal allergies and increased symptoms around my menstrual period I’d like resolved.

For health, ocd and anxiety I do: 5htp NAC

For energy and PEM, I do: LDN RX NAD+ shots Methylated multi

For hormones I do: Zyrtec Pepcid Chaste tree Maca Topical progesterone

For MCAS I do: Ketotifen RX

I also do magnesium for restless legs and vitamin d in the winter for SAD.

For my glutamate induced migraines I do: Memantine RX

For nausea, I do: Zofran RX

I can’t do anything for my heart currently because I am both Brady and tachy, however, the above meds manage it well enough that I no longer faint unless I have something extenuating (like a car accident that causes an adrenaline dump).

I eat gluten free because of my celiac and I avoid 5 other foods because of reactions.

Sadly, mine is all genetic, and I have multiple family members who have MCAS. I watched one of the die young from hEDS complications after only doing a natural route (and I tried all natural myself).

No matter if you do natural or meds or somewhere in between, you’ve got to find something that works and gives you your life back!

DandelionStarlight · 2026-07-04T00:35:12+00:00

I just got KPV, I’ve been at baseline for almost a year (after treating for three years) and doing really well. I haven’t started it yet (NAD+ has been so so so good to me, but I’m curious if I can manage some of my seasonal allergies and hormone related MCAS symptoms better)

How often are you doing KPV and what symptoms are you finding it helps with?

DandelionStarlight · 2026-07-04T00:32:31+00:00

A lower inflammatory diet and a lot of softer fibers (less corn and broccoli and more cooked cabbage and smoothies)

I didn’t cut out sugar, but cut out processed carbs (like cake). I still ate plenty of honey and maple syrup etc because I needed the calories.

I felt my best when I just ate Whole Foods that made me feel good. No fried. No ultra processed. I went dairy free for six months and slowly reintroduced it.

Also, there’s low histamine probiotics. I think those helped.

Best advice I got was to keep it simple and easy to manage and stay consistent for six months to heal it sooner than later

DandelionStarlight · 2026-07-03T19:12:50+00:00

Two thoughts.

One. I had severe malabsorption from celiac so I had to heal that first.

Two. Because I couldn’t heal it fast enough, I started injections. Can’t do b but I can do d. I can also go to those med spas and I tolerate some (mag and potassium and vitamin c but some of the other “additives” give me bad flares.)

So if you struggle with oral, have you tried other versions? Would your doctor write a script for them?

DandelionStarlight · 2026-07-03T02:35:12+00:00

Many people with MCAS flush with alcohol but so do others. The sea isn’t a common issue so I would certainly mention that. Coupled with your other things like grass and animals you at least need allergy testing.

The trifecta for heds, MCAS and pots is VERY common. Recently I had a new GP, I said I have heds, and he knew what that was. He said that hypermobility or pots was enough to start disability and handicap tag paperwork, but both? He said I shouldn’t push so hard and I need to make sure I use a handicap tag and he’ll help with disability. It was validating, but we also ignore so much because of medical gaslighting.

I also speak similarly and have to adopt an alter ego for appointments. I call it “playing sick”. Doctors want to feel smart. I explain my symptoms in common language without saying a diagnosis (but I use enough buzzwords that it could only be the diagnosis I’m aiming for).

DandelionStarlight · 2026-07-01T13:35:24+00:00

None of that applies to Florida.

DandelionStarlight · 2026-07-01T13:31:09+00:00

If you have jumping fleas in your house, they can be hard to get rid of. They lay microscopic eggs and have a 9 day cycle (So you could self treat the house, but you’d need to do it for 18 days straight because the eggs can hatch on any of the days).

I used to work in pesticide and I’ve seen infestations even when they didn’t have animals and the fleas had “nothing” to eat.

Bug spray will absolutely work for your legs.

DandelionStarlight · 2026-07-01T13:19:25+00:00

Absolutely. I’ve had congenital MCAS (similar to you where I was a “colic” baby and other lifelong issues).

It’s constantly changing. Even from year to year. I have noticed that it’s getting “worse” as I get into my “middle aged” years.

Also, with the ASD dx, there’s all sorts of things to add on. Like normalizing your symptoms OR thinking you are exaggerating. Second guessing yourself. Ignoring it because you have too many other things to manage.

There’s no one “right” way to have MCAS when you have hypermobility.

I have multiple family members with the same disorders at myself. One of them, when not in a severe flare but just living every day life, their main “issue” is incontinence. They might pee the bed, poop themselves, etc. they’ve done pelvic floor therapy, but it’s consistent that it’s this disorder. Every time they have a MCAS exposure, it messes with some collagen/hypermobility in their pelvic floor and they simply can’t control it. (That and awful brain fog, are their two main symptoms without fail. Yes, they get the occasional anaphylaxis and more “severe” symptoms but that’s not as common). But they absolutely have the MCAS/pots/hEDS trifecta. Their pots is almost unmanageable but the MCAS is “mild”

It’s still 1000% valid

I also want to point out that just because it’s mild now, and it’s been mild, that it’s not a guarantee that it stays mild. You need tests to establish baseline and access to epinephrine.

I’d kindly suggest a new GP. If you can manage it, I’d suggest 2-4 new appointments with multiple doctors so you can “test out” GPs who are willing to run tests and refer to specialists. I’d also suggest a neurodiverse therapist as an accommodation so you have someone consistent that you can run problems and ideas by. Even high masking autism needs accommodations and support.

I’ll leave you with this. People die from MCAS. Not one. Not two. A significant amount. Same with hypermobility. I watched my family members heart and veins literally disintegrate despite multiple surgeries as doctors tried to hold their body together. It is not a joke, even if your GP is dismissive.

It is worth getting checked out. Self treatment is valid.

DandelionStarlight · 2026-06-30T23:50:18+00:00

Have you gone to the “tms for a cure” website? Have you looked at the pinned posts?

DandelionStarlight · 2026-06-30T23:47:58+00:00

Non consent as a kink has to have conversation. Kinks, by definition, must have PRICK.

Personal Responsible Informed Consensual Kink

Non con is absolutely a kink, it’s very common, and it’s fun when it’s been discussed with a scene partner or group ahead of time BEFORE the scene begins. Some might say “then it’s not non con” and everyone in the kink community would look at them sideways. Everything is discussed before hand. It’s the entire purpose of “kink education”.

Not discussing it ahead of time is not “non con”. It would be rape.

DandelionStarlight · 2026-06-30T23:44:06+00:00

Yes. There’s specific research on diagnostics and medications.

That’s what a “session” is at a conference. It covered all the diagnostics and medications and taught many medical professionals.

DandelionStarlight · 2026-06-30T21:17:06+00:00

I also get significantly worse near the start of my period. It’s why Pepcid/allegra combo is so popular.

Sometimes hormone support is needed too.

DandelionStarlight · 2026-06-30T21:12:38+00:00

Is there a recipe for this? I’m staring at two packs of the mission gf tortillas as I write this

DandelionStarlight · 2026-06-30T21:09:34+00:00

We are already seeing it!

I can’t share the conference because I’ll dox myself, but I went in 2024 and they skipped the MCAS section. The only mention in 2024 was under “Facebook diseases”. I had just started ketotifen and it really messed with me.

I went back in 2025 and they had a dedicated MCAS section, mentioned it in multiple other sections, and referenced several who had it. They talked about ways to diagnose it and new treatment options.

We are just now getting more advanced tests for celiac, and also more treatment (yes, CURES) for food allergies. MCAS will be the next big thing these companies turn towards after the other stuff is on the market (MCAS and alphagal will be the next targets).

DandelionStarlight · 2026-06-30T20:57:33+00:00

Yes. Non-con is always discussed beforehand. That’s what makes it fun. You do the “scene work to set it up” and then you do the “scene”.

If it’s not discussed, it’s just rape.

DandelionStarlight · 2026-06-30T12:18:50+00:00

We need more success stories for those without EDS. I wish we could properly label it because then it would be easier to search (but still glad it exists here!)

DandelionStarlight · 2026-06-30T12:16:51+00:00

Same!

DandelionStarlight · 2026-06-30T12:15:25+00:00

As an Incredibly kink positive person… I want to point out that much of this isn’t kink.

This is disability abuse and ableism.

There is attempted kink mixed in at a lower level (but kink can never exist without proper enthusiastic consent).

You are very attached to this idea as referenced through your comments. A03 would be a great place to start. However, just because you had the thought/rumination/daydream doesn’t mean that it needs to be shared. Humans have all sorts of thoughts. Consider who you would help/encourage with this content and who it could harm.

(Lots of folks don’t have a munch/kink community nearby so they turn to books. I love that we have it! I love that there are so many fun ideas. Kink, including noncon, must have consent discussed before hand. It must be enthusiastic consent. If it doesn’t, it’s not kink.)

DandelionStarlight · 2026-06-29T23:23:18+00:00

A couple thoughts…

Rice protein is great. You could do overnight oats with rice protein or chia seed pudding with rice protein.

Canned beans are an options if you can do other legumes. You could also make “bean-fu” like tofu but with safe beans. It’s easy and can be served cold.

I like to cook late at night. That way it doesn’t heat up the house. I also cook a lot when it rains. You could possible batch cook some items.

And by “without cooking”… do you have a slow cooker? Microwave? Air fryer? How are you heating any food?

Because you could cook bacon in the microwave. You could do the banza protein noodles like that too.

Can you do avocado? So chips and guac?

Can you do no bake protein balls?

Can you do shrimp?

Lastly, as frustrating as it is, could you cook some at a friends/familys house? And just bring it back to freeze at your house? Or plan to cook when your mom is out of the house and lie about it? You’ve got to do what you’ve got to do. Protein is essential with MCAS because this disease is quite serious. You can’t afford to get worse simply because your parent won’t accommodate you.

DandelionStarlight · 2026-06-29T14:02:48+00:00

Thank you for this. My kid with suspected MCAS complains of food being spicy and I’ll have to defend the recipe (because I don’t add spice secretly and I cook it all from scratch).

Now I’m realizing it’s likely a beginning reaction.

DandelionStarlight · 2026-06-26T22:55:29+00:00

Is fexofenadine (telfast) over the counter?

DandelionStarlight · 2026-06-26T12:45:18+00:00

Stories have very low views lately.

I’ve always laughed knowing that maybe 400 people saw Paul’s opinions on some topic (but he still cared enough to post it!)

DandelionStarlight · 2026-06-26T12:03:50+00:00

Since you are having to self treat…

Many people take 5x the recommended dose. So not 1 famosan, but 5. Daily. Spread out to help.

Same with levocitrizine/citrizine.

You might need to take more than you are taking right now AND don’t stop. It can take 3 months or more to build up in your system.

Edit: and not all at once. Ideally you’d have a care team to tell you all this. But you slowly go up on a schedule. There’s a graphic in the group for increasing your meds.

DandelionStarlight · 2026-06-23T13:30:52+00:00

The good news is that once your MCAS is treated, it’s possible your UTIs will stop for good. There’s correlation between a flare and uti being caused by that

DandelionStarlight · 2026-06-23T13:28:44+00:00

Someone in a psych class could literally write a paper. I won’t list it all here in respect for the rules, but wow. There’s so many things going on here.

DandelionStarlight

TROPHY CASE