u/Alternative_Pop2455

Hey everyone,

I’m about 3 years and 3 months into long COVID, and I’m trying to understand what might actually be driving my symptoms.

Recently, I took deflazacort 12 mg for 5 days, and during that time something really surprising happened —

my fatigue, post-exertional malaise (PEM), and even lingering issues like neck pain basically disappeared. I felt almost completely normal.

Only after overexertion my symptoms gradually came back.

So now I’m confused. I asked AI and it suggested this might point toward a neurological/inflammatory issue, but I’m not sure what to make of it.

What could this response to steroids indicate?

Neuroinflammation?

Immune dysregulation / autoimmune component?

Microclots?

Viral persistence?

Mitochondrial dysfunction?

Would really appreciate if anyone with similar experiences or knowledge could weigh in.

Current situation:

Main issue now is fatigue + PEM

Edit - pain when I close my eyes (sometimes)

POTS is mostly managed now (comes back only if I overexert)

Things I’ve tried so far:

Paxlovid (8-day course) → no major benefit

Tamiflu → no effect

Antihistamines (famotidine 20 mg split dose) → still taking

LDN (0.1 mg) → didn’t tolerate (vivid dreams, scary auditory effects)

Nicotine patches (up to 7 mg) → no benefit

Sunlight therapy (40 mins daily for 4 months) → helped sleep, not fatigue

Cut caffeine + processed sugar

At this point, I’m just trying to understand the root driver so I can move in the right direction.

Also, just want to say — this community has been incredibly helpful over the years. Really appreciate everyone here.

Thanks 🙏

I’m posting this out of desperation and honestly just looking for some hope from people who’ve been through this.

It’s been 3 years and ~3 months since COVID, and I’m still stuck in this loop. My main symptoms now are:

Persistent fatigue (baseline never really improves)

Post-exertional malaise (if I push even a bit, I crash)

Breathlessness if I stop supplements (especially B-complex, etc.)

Dizziness and feeling off if I try to push through fatigue

Constant neck pain that just doesn’t go away

What’s really frustrating is that it feels like my body isn’t recovering on its own. If I stop supplements, I feel worse. It doesn’t seem like time alone is fixing anything.

Things I’ve already tried:

Antihistamines → no real benefit

LDN → didn’t suit me

Paxlovid (8 days) → no improvement

I guess my question is… has anyone actually broken out of this kind of cycle after years? Not just temporary relief, but real baseline improvement?

Did it happen with time alone? Or something relatively simple (pacing, diet, supplements, rehab, anything)?

Right now it just feels like I’m stuck managing symptoms without real recovery, and I don’t know if I’m missing something or if this is just how it goes for some people.

Would really appreciate hearing from anyone who’s been in a similar place and found a way forward. Even small improvements would mean a lot.

Thanks 🙏