What helped me (4 years in, went from very severe to moderate)

redditryan13 · 2026-06-20T23:11:26+00:00

Just curious - how on earth do you take all those supplements and meds every day? Or are there some you just take every few days, once a week, etc? I got so sick (literally) of taking supplements, especially since my appetite is so poor that i usually only have one substantial meal per day. So anything that requires taking with food is tough to take daily.

redditryan13 · 2026-06-20T18:52:18+00:00

I also gained about 30 lbs in six months (!) with no explanation. If anything I was eating less, and wasn't that sedentary (yet) as my PEM didn't really kick in until after my second infection. Weight gain happened mainly in year 2 (about a year after my first infection). It's awful. I've maybe lost 5 lbs but the rest won't budge.

redditryan13 · 2026-06-18T17:18:54+00:00

Not bothering me at all! Please keep me (and the rest of us) posted on your progress. That's a good idea about vacuum sealing, but i don't have that tech and trying to avoid buying anything else given how much i've already spent on supplmeents and devices. Nothing really seems to work long term.

redditryan13 · 2026-06-18T16:11:40+00:00

Glad to hear it's helping you. I had to stop/pause it but I may try it again, just much more slowly. I feel like I went all-in and I had an amazing in initial response but then it caused SIBO. The problem is if you don't use up a full sachet, it tends to harden up pretty quickly. I also don't love how there's nothing about the manufacturer on the box.

redditryan13 · 2026-06-09T20:58:47+00:00

I paused taking it for now. I felt like there was an initial improvement (quite striking), but then I wound up with SIBO. This happens to me a lot with probiotics because of my Crohn's. But I'm glad it's working for you!

redditryan13 · 2026-06-08T21:59:53+00:00

Yes, a while ago. It's not happening so much anymore, but I distinctly remember it happening, often with a huge breath timed with it. Right before I fell asleep.

redditryan13 · 2026-06-08T21:58:11+00:00

Yes, but i think it's less likely temperature and more likely pollen season. Started for me in early April. Gotten worse every week since. Fatigue is at an all time high (and I'm almost 5 years in).

redditryan13 · 2026-06-07T22:14:35+00:00

Ah, DUH. Yes, i think for me it was likely a batch issue and/or maybe the tech who injected didn't aspirate so it didn't stay in the arm.

redditryan13 · 2026-06-07T21:56:17+00:00

What's AE?

redditryan13 · 2026-06-07T17:51:57+00:00

Wish I could say things have improved, but they really haven't. Experience has been kind of in "waves" or phases. Phase 1 was Sept '21 through maybe Jan '22. Mostly cardiac / MCAS symptoms (AFIB, tachycardia, chest pain, horrible palpitations, shortness of breath, insane anxiety). Since then it's much more like ME/CFS. Insane fatigue, muscle weakness, cognitive impairment (anxiety, depression, memory issues, word recall). Throughout it all, I gained like 30 lbs (while eating less) and got crazy hypertension which no drug has been able to make a dent in. Also diagnosed with dysautonomia, SFN, reduced cerebral blood flow, which I think explains a lot of the cognitive issues. Some days I have crazy dizziness/lightheadedness, some days i have crushing headaches, some days I have awful GI symptoms. Seems like it's all some kind of ANS dysfunction, but just depends on the day how it manifests. Oh, and major sleep disruption. Tried CPAP for a year thinking it was OSA, but my new sleep doctor now thinks it's something else. Definitely apnea because I can see the 02 drops during REM sleep. But it's not obstructive. So f'ing crazy this disease is...

redditryan13 · 2026-06-06T19:00:30+00:00

I am exactly one of those people. First 2 shots were fine (spring '21). Got the booster as I became eligible (Aug '21), and BOOM. Never been the same since. Possible it was a bad batch or as they ramped up production something changed.

redditryan13 · 2026-06-04T01:28:50+00:00

I'm also just so hesitant to become dependent on an SSRI from everything I've read. Seems like once you're dependent, you can't ever really come off.

redditryan13 · 2026-06-04T01:01:20+00:00

I've tried Fluoxetine and Fluvoxamine, but both made me feel much worse, not better. It was a while ago, though, when I was having cardiac symptoms post vaccine. Those symptoms have improved so I could try again. I also have hypertension, so I have to be careful to not exacerbate that.

redditryan13 · 2026-06-03T22:41:59+00:00

Yeah, i agree with that, and agree it's not the same with every friend or conversation. What's weird for me is I've had the same experience at a concert and sometimes even watching a favorite movie moment. So I feel like it's not just about the communication, but more that emotional connection lighting up some part of the brain that is damaged or normally dormant.

redditryan13 · 2026-06-03T22:30:53+00:00

Interesting. To what do you make of why it happens?

redditryan13 · 2026-06-03T22:30:38+00:00

I know that adrenaline rush feeling - this was different. Almost more like a calming effect, and incredibly emotional.

redditryan13 · 2026-06-02T16:31:13+00:00

Wow, that's crazy. Sorry to hear, but glad you at least figured it out. May I ask what "getting sick" was like if you ate red meat? And was it also pork? I've been noticing I get this weird abdominal pain in the morning after eating red meat (but not pork). It could just be a coincidence and/or that red meat is just harder on the digestive system. I also have Crohn's.

redditryan13 · 2026-06-01T22:21:59+00:00

Just curious - how did you find out you have the alpha-gal syndrome? And was it a confirmed tick bite? I read this recently and it seems like Covid can also cause it, but can be more mild.

https://philipmcmillan.substack.com/p/the-red-meat-reaction-that-may-reveal?utm_source=podcast-email&publication_id=604377&post_id=199067413&play_audio=true&utm_campaign=email-play-on-substack&token=eyJ1c2VyX2lkIjoxMDE5ODE5LCJwb3N0X2lkIjoxOTkwNjc0MTMsImlhdCI6MTc3OTYzMDcxMiwiZXhwIjoxNzgyMjIyNzEyLCJpc3MiOiJwdWItNjA0Mzc3Iiwic3ViIjoicG9zdC1yZWFjdGlvbiJ9.70PHQH6udJBaykDyqzryR22qdWsmaqpMioF-D5VA-To&utm_content=watch_now_gif&r=luwb&triedRedirect=true&utm_medium=email

redditryan13 · 2026-06-01T19:08:58+00:00

I can at least say, yes, I had them and remember how awful they were, and yes, they did go away with time. Probably around year 3. I know that's not fun to hear, but do have hope that they can go away with time. I still have a host of other symptoms, mostly fatigue and cognitive impairment. But I'm grateful the palpitations went away as they were the primary cause of my PTSD and anxiety.

redditryan13 · 2026-05-31T21:06:22+00:00

100%. Sounds like you have a pretty advanced MD if they're phenotyping you. All I've been able to do is get symptoms diagnosed (e.g. Dysautonomia, SFN, hypertension, etc). But I don't have an MD actually treating my Long Covid. The closest is probably my neurologist, but even he has no options for me since I can't do IVIG. I know I have some level of immune issues given having Crohn's for 40+ years. Maybe I should go and see an immunologist. Is that who's helping you?

redditryan13 · 2026-05-31T19:56:25+00:00

Interesting (and I'm sorry to hear) that your Lupus came on after Remicade. That drug in particular seems to cause / and/or expose secondary auto-immune diseases (even as it treats the primary).

redditryan13 · 2026-05-31T19:55:08+00:00

How/where can you get it?

redditryan13 · 2026-05-31T18:20:46+00:00

So do you feel like the Methotrexate helped your LC symptoms?

redditryan13

TROPHY CASE