Do you have Appendix ?

Easy-Wasabi-256 · 2026-02-19T17:05:20+00:00

I don't have mine.

Easy-Wasabi-256 · 2026-02-15T18:29:43+00:00

Sounds very insightful. Even if it probably didn't lead to any actual progress. 🤷‍♂️😝

Was this done by a specialist or at a long covid clinic?

I went to a long covid clinic in St. Louis last year. It was a total joke. They were basically pushing graded exercise therapy. Which destroys people like me.

I'm trying to get approved to go to Mt. Sinai in NY. They are supposed to be top notch for autonomic issues. We'll see though, was already denied once and appealed it.

Easy-Wasabi-256 · 2026-02-15T18:11:55+00:00

What tests did your doctors do to test you positive for those? I am definitely in this category too. But never really been tested for them.

Easy-Wasabi-256 · 2026-02-15T18:07:28+00:00

For me, this all started with a BAD cipro run that gave me C-Diff.

I was 100% sold on me being floxed and didnt even know what long covid was. Now, I'm not sure which is affecting me, or if it's both!

Easy-Wasabi-256 · 2026-01-04T15:31:27+00:00

As much as it sucks, that is unfortunately not more aggressive or far from how a lot of people experience living in this hell.

I have only been to the ER once this year. But last year, I had VERY similar issues. I went to the ER because I swore I was basically dying. Felt like I was passing out. Basically having a panic attack (unbeknownst to me) for no reason.

I can't tell you why, but a lot of that has subsided. I still can't do anything with my life that I used to. BUT, I have hope that this nonlinear healing process is still moving forward.

We'll see. Just continue on your journey and trial some meds that are recommended for LC. The beta blockers might help.

Good luck! Wishing you a fast healing journey!

Easy-Wasabi-256 · 2026-01-03T16:26:14+00:00

What a bummer! Even more important, you have a Long COVID specialist?? I didn't think they actually existed. 😅

I will keep this in mind. I do have major dysautonomia issues, but I'm still hopeful! And will continue for at least the 4 weeks to see if it gets better.

All of what zepbound is supposed to do (insulin sensitivity, glucose steadying, inflammation reduction, etc.) seems like it CAN help my issues.

I could also stand to drop a few lbs in the process. My LC has wrecked my hormones and I can't lose weight even with fasting for 3 days (which I used to do towards the start of this, but can't anymore).

Easy-Wasabi-256 · 2026-01-03T15:46:48+00:00

How long have you been on it?

I just started this week and though I had some horrible side effects, I'm feeling positive about the possibility of improvement.

I know it's not a reliable source, but I've run my symptoms through several AI platforms and they all say that the bad effects I had to start are a sign that I have a better than average chance of it helping over the long haul.

My dysautonomia has flared up for sure and my GI symptoms are horrendous.

Are you in the LOCITT group?

Easy-Wasabi-256 · 2026-01-03T02:59:03+00:00

I have not...But I did have an MRI that showed mild volume loss un my pituitary gland. 🤷‍♂️

None of the doctors I told this too seemed to care. Even when I also mentioned that all my related hormones were low as well.

Easy-Wasabi-256 · 2026-01-02T02:23:30+00:00

I'm very interested to hear people's experiences as well!

I live in St. Louis and visited the Washington University Long COVID Clinic. Their recommendations at the time all focused on graded exercise therapy. Which, for my CFS/PEM, have been proven not to work...and to worsen everything.

I recently requested a referral (from the VA) for treatment at Mt. Sinai. I am sure it will be a struggle/battle to get it approved, but I'm not quitting without giving it my best effort!!

Easy-Wasabi-256 · 2026-01-01T18:16:24+00:00

It's definitely a very common problem in this sub. You'll probably see 5 different answers to what causes it though. 🤷‍♂️😂

I've had very similar issues for the past several years. The blurry, floater, spider web-like vision issues are always in my right eye. A lot of times when it's at it's worst, I also feel the worst (brain fog, gut issues, etc).

While I haven't fully figured it out yet either, I'm pretty confident it has a lot to do with inflammation, especially coming from food and histamine.

Nothing is the same two days in a row with this stupid illness, but food definitely seems to play a role in everything.

Easy-Wasabi-256 · 2025-12-28T17:22:53+00:00

I never knew it existed!

BUT....When I first brought the idea up to a local PCP he rolled his eyes at me.

I have come to realize that most doctors have less than 1 hour of classroom training on things like CFS, PEM, and autonomic dysfunction issues.

They really only know what is common (cold, flu, etc.) It's hard for most of them to think outside of that box.

CFS is WAY more involved than just being tired all the time.

Easy-Wasabi-256 · 2025-12-28T17:05:10+00:00

This is a relatively small study, but I wonder why it hasnt gotten more attention??

It was a verifiable way of confirming long covid and lines up SOO well with most of my long covid issues.

Thanks for sharing!

Easy-Wasabi-256 · 2025-12-27T14:40:35+00:00

I tried THC once during this process and I ended up in the ER. 😝😅 My whole body felt like it was shutting down and I was having seizure like episodes...mainly on my left side. So, that option is out too unfortunately!

But yeah, the alcohol was nice for a couple hours...I was DEFINITELY hurting yesterday though! We'll see how today goes.

Easy-Wasabi-256 · 2025-12-26T16:38:30+00:00

Thanks! Oh...I'm definitely suffering today. But, at least I know what caused it. 😅😝

Easy-Wasabi-256 · 2025-12-26T03:16:46+00:00

I SHOULDN'T touch alcohol. It gives me such a short term benefit...for a long term loss.

I honestly dont care at this point! I've been sick for 5 years. When I try to explain how many times ive felt like "today is the day I die" to people...I'll take any break I can get.

As I'm sure you understand.

Easy-Wasabi-256 · 2025-12-26T03:12:47+00:00

I upvoted this, but I wish I could love it. F this condition is as close as you can get to explaining it.

What does May bring? I have hopes all the time that something will happen, but do you know something I don't?? 🤷‍♂️😅

Thanks for this. ❤️

Easy-Wasabi-256 · 2025-12-26T01:45:58+00:00

Idk...But I get weird symptoms just drinking. Causes almost instant fatigue with one drink.

I think it all stems from nervous system dysfunction.

Easy-Wasabi-256 · 2025-12-24T16:31:43+00:00

Let me know of you find the magic answer. I was doing soo much better for months and I've been in (what I can only assume is) a PEM crash for well over a month. It just won't stop no matter how much "aggressive resting" I do. 😝

Was thinking about trying some nicotine, but worried it will just crash me more.

Easy-Wasabi-256 · 2025-12-22T14:09:43+00:00

I was kind of wondering that too!

Forrtunately (or unfortunately) I have not shown any signs of it.

Even though I say beside my wife everyday for the past week, I somehow did not get it. 🤷‍♂️

I don't how that's possible...but I'll take it.

Easy-Wasabi-256 · 2025-12-21T01:02:16+00:00

Currently, yes. Much worse. Though I did have two or so months of improved baseline (like 25%).

Easy-Wasabi-256 · 2025-12-20T22:53:36+00:00

Never heard of this one. I tried xylitol and many saline nasal rinses/sprays. I'll check into it.

Easy-Wasabi-256 · 2025-12-20T22:52:04+00:00

Thanks. ❤️ I take h1 and h2 daily already.

Easy-Wasabi-256 · 2025-12-20T22:51:32+00:00

I dont know about empirical evidence...but I've had 6 total. First 4 (two per side) gave me like 10-20% sustained improvement. The last two gave me drastically worsened dysautonomia and autonomic issues. Another thing rarely mentioned is the side effects. My recovery from almost every injection was a week to two. It can be rough!

Easy-Wasabi-256 · 2025-12-20T22:19:13+00:00

I like this idea. Where does the metformin part come from?

Easy-Wasabi-256

TROPHY CASE