u/VanTechno

▲ 12 r/FND

I need a point system for when I'm out in public

So I do still go out from time to time, I'm usually in a wheelchair, and because I'm in public I'm twitching like crazy, and I will have a seizure or two. I was joking with my wife I need a point system for when I'm out, based on comments I hear when people see me.

Here is what I have so far:

  • "Are you ok?" 1 point.
  • "You need help?" 1 point.
  • "OMG!" 3 points
  • Have them staring at me wide eyed when I come up for air after a seizure: 3 points
  • Hearing my wife say "he's fine" while she is talking to someone else: 2 points.
reddit.com
u/VanTechno — 2 days ago

This past week I've had multiple people ask if I've tried Ivermectin to treat my Long Covid symptoms (I'm mostly neurological with headaches, dizziness, brain fog, tics, fatigue, functional seizures, and more. I've had this since 2023). One was my sister who is a nurse (and prone to conspiracy theories fed to her by her mother-in-law), the other was a dental hygienist (who is two power crystals away from being a full box of fruit loops).

Personally, I have zero faith in Ivermectin to do anything for me. The chemistry and biology just do not make any sense what so ever to have a net positive effect. It is no better than a placebo for viral infections (great for worms tho, astonishingly good for worms).

Key issue is that Ivermectin doesn't really cross the brain blood barrier. Most of my problems are past that (brain inflammation, cerebral hypoperfusion).

But at the same time, very little chance it will make me any worse either. Part of me want to take it just so I can legitimately tell people I did and that it did nothing. But now I'm just doing things out of spite.

I'm so tired fighting about stupid stuff like this.

Side note: I'm not against trying alternative treatments. I'm planning to try out a hyperbaric chamber next.

reddit.com
u/VanTechno — 25 days ago