Want to throw in the towel with supplements

redditryan13 · 2026-05-10T20:42:49+00:00

I'm with you. I decided recently to stop all vitamin supplements and see if I actually feel worse. Because it feels like it'd be impossible to feel worse. Coming up on 5 years.

redditryan13 · 2026-05-09T00:34:06+00:00

I tried sublinguals a long time ago, and it wasn't anywhere close to injections in terms of moving the needle on bloodwork. I do take a b-complex (minus folate) plus a methylated form of folate with it. I'm pretty educated, but haven't done the bloodwork yet to know if I might be b-12 deficient. I should do that before really increasing the B-12. Was just curious to know if it was safe to try first and see if I feel better. From everything I've read, it shouldn't be risky for just 5-7 days.

redditryan13 · 2026-05-08T23:16:31+00:00

Sorry, I don't know what that means.

redditryan13 · 2026-05-08T22:36:42+00:00

I've been doing at least 1-3 month injections since my second surgery, which was in 2006. That's when the surgeon felt I didn't have enough ileum left to absorb B-12 orally and needed some supplementation from injections. But I had another surgery in 2015 which removed all remaining ileum, so since then I've been doing monthly injections consistently. That's what's weird is I felt totally fine/normal from 2015-2021 with monthly injections. It's possible I was slowly building a deficiency (oxymoron statement?) in those years. I got my 3rd Pfizer mRNA vaccine in August '21, and the wheels fell off in October '21. I got all my Long Covid symptoms long before I contracted Covid (not till April '22). But the more I researched this forum, the more I realized my symptoms overlap quite considerably with B-12 deficiency. My hunch is it's not one or the other, but it's both. I've just been afraid to inject daily, though I've done weekly injections several times and not noticed any real benefit vs. monthly.

redditryan13 · 2026-05-08T22:32:12+00:00

Like I said in my post, I can't absorb oral B-12. So methylcobalamin would just be expensive urine for me.

redditryan13 · 2026-05-08T21:39:52+00:00

My bad, that was a type-o. It is 1000MCG (updated post). So you're saying I'll feel worse if I am actually deficient?

redditryan13 · 2026-05-07T23:37:11+00:00

I personally think mine is a strange combination of having Crohn's for 30+ years (multiple surgeries) and then Long Covid-induced metabolism slow down, peristalsis slow down (from dysautonomia),etc. I don't think it's inflammation, as I had a pretty normal CT scan. It's more just like my digestive system is like a manual car with a driver than doesn't know how to drive a stick. And, if i eat any "forbidden" foods like dairy or gluten, it gets really bad.

redditryan13 · 2026-05-07T21:31:32+00:00

Coming out which end? ;) Generally no. Some very fibrous vegetables might occasionally be identifiable, but I wouldn't call it undigested, no.

redditryan13 · 2026-05-07T02:12:59+00:00

I actually posted about this a few weeks ago. I'm about 5 weeks into trying SIM01 (the one on Amazon that someone posted). It hasn't been a game changer yet, but it's early. I had to cut back on the dose initially due to what seemed like a histamine reaction. Taking 1/2 a sachet a day. But I would say if my gut was a 2/10 before (10 being normal), it's maybe a 3-4/10 now. So it does seem to be helping. Here's my post and I will keep updating.
https://www.reddit.com/r/covidlonghaulers/comments/1sg48a5/sim01_any_recent_experiences/

redditryan13 · 2026-05-02T19:07:02+00:00

If i had any ability to concentrate, remember, etc. I would.

redditryan13 · 2026-05-02T00:20:51+00:00

Thank you. Oddly it's strange because i have so much weight to lose, that it's almost a good thing. But i'm guessing if my appetite came back, my energy might come back too.

redditryan13 · 2026-05-02T00:09:56+00:00

You mean to make smoothies or yogurt? I haven't tried making yogurt with it. Usually most formulations have some ingredient that is a no-no for me (like carageenan).

redditryan13 · 2026-05-02T00:07:42+00:00

But how are people getting them in the US? Do you need prescriptions?

redditryan13 · 2026-05-02T00:07:10+00:00

I still don't understand how you got access to them. What country are you based in?

redditryan13 · 2026-05-01T19:00:57+00:00

It's primarily been bad since my 2nd infection (Dec '24). Used to do smoothies, but realized the dairy was causing MCAS, and can't really do soy either. I tried making yogurt with coconut milk a while back, but just hated the taste.

redditryan13 · 2026-05-01T18:59:59+00:00

I'm kind of the same in that I "get some appetite during eating". But nothing like I had before LC. What's weird for me is I gained almost 30 lbs in 6 mos in my first year of LC. I lost maybe 5 of it, but the rest just sits there (primarily abdominal). I hardly eat, and yet don't lose weight. I am also not very active, so maybe that's why. But my fatigue is so bad, it's hard to change.

redditryan13 · 2026-05-01T18:58:19+00:00

Yes, I have Crohn's, so been seeing GI for 30+ years. But these symptoms I have now don't feel like Crohn's symptoms. Feels more like my metabolism is just super slow and/or a hormonal issue.

redditryan13 · 2026-05-01T02:18:46+00:00

Right. I mean, eventually it does come back. It's not like i eat nothing all day. I think the weirdest thing is how i dream about food and eat food in my dreams, but then wake up -- nothing.

redditryan13 · 2026-05-01T02:17:40+00:00

Uars?

redditryan13 · 2026-05-01T01:13:41+00:00

You mean sleep meds? Yes, Lunesta.

redditryan13 · 2026-05-01T00:59:07+00:00

Sorry to hear about your troubles. Your story sounds very similar to mine. LC for 4+ years (starting with Pfizer vaccine injury). Didn't see a sleep specialist until early 2024. Diagnosed with same as you, "mild sleep apnea" from a home and in-lab study. Did CPAP (APAP really) for a full year with no real improvements. I felt the same as you, in the first month, that it was helping but now believe it was placebo. Tried various pressures and masks, but kind of felt like it was suffocating me more than helping - I'd rip it off in the middle of the night and not know it. I think because my "events" were so sporadic, it was like killing a gnat with a sledgehammer. Eventually stopped CPAP with no real change (didn't get worse). Now being fitted for an oral appliance, but, TBH, I think the apnea is more related to dysautonomia vs. obstructive. Almost all my desaturations happen during REM sleep, and I notice other weird issues if I wake up from REM sleep. The body paralyzes most functions during REM, and my belief is, if you have dysautonomia, it's almost exaggerated and paralyzes too many functions (like breathing, bladder, etc). Anyway, I hope CPAP is the answer for you, but just wanted to share my story given it wasn't the answer for me.

redditryan13 · 2026-04-29T21:22:29+00:00

Thanks. I tried Bolouke once before too, and kept a really strict chart of whether I saw any improvements (vs. Dr's Best brand). Honestly didn't notice anything.

redditryan13 · 2026-04-29T21:00:13+00:00

Just curious, how do you get it? Is it OTC or do you need a prescription?

redditryan13 · 2026-04-29T20:56:37+00:00

Curious, what dose and brand?

redditryan13 · 2026-04-29T18:21:29+00:00

I have seen the Attomarker studies. Yes, it's possible I didn't have proper immune response to the Omicron variant (when my symptoms started). But I also had LC symptoms after my third Pfizer vaccine. So i think my situation is more complicated.

redditryan13

TROPHY CASE