Webb Powell

Disabled by Long Covid w/ ME + POTS, Jan 2020. Crohn’s. AuDHD.

[Webb Powell @DoubleYouPowell]

So, yeah, I won’t be performing in Unbound II.

[Webb Powell @DoubleYouPowell]

Yesterday I drove for the first time in 18 months. Wife had a small key emergency 1 km away. The whole thing took less than 10 minutes. That activity still completely ruined yesterday and today, and I’m not expecting great things for tomorrow.

[Webb Powell @DoubleYouPowell]

I know there are bigger things at stake but also the dancing featured in the trailer is powerfully off-putting. I definitely don���t want to see more.

[Webb Powell @DoubleYouPowell]

@chydorina I’ve done a couple courses of Prodrome Glia and would be interested in the blood test.

[Webb Powell @DoubleYouPowell]

@LaurenWhatevs 0:40 🤘🥳🤘

[Webb Powell @DoubleYouPowell]

@AmandaB55744931 Yeah, 4.5 mg seems to be the most common dosage, not many people seem to get prescribed higher. Someone around here was very excited about how well 12 mg was treating them earlier this year, but I can’t remember who.

[Webb Powell @DoubleYouPowell]

Anyone remember who it was that was doing well initially at 12 mg LDN? I can’t remember if it was an LC or an ME person. I think it was a woman, and the tweet was probably 4-6 weeks ago.

[Webb Powell @DoubleYouPowell]

Anyone know if @Madstlck is ok? No activity here since March.

[Webb Powell @DoubleYouPowell]

@AmandaB55744931 AFAIK LDN’s paradoxical effect maxes out at 12 mg—but of course the best dose for many is much lower. I’m really happy with my improvement at 10, though. Much easier to walk around my home, make a tea, wash a dish, etc.

Don’t know if it’ll help but I’d like to try 11 or 12.

[Webb Powell @DoubleYouPowell]

@AmandaB55744931 The resilience boost I’ve noticed at 9 and 10 mg is not getting hit as hard with PEM/PESE after exertion, stress, noisy repairs, etc. I don’t push it, but when that stuff’s unavoidable it hasn’t been as bad. I think I had some improvement in that regard at smaller doses, too.

[Webb Powell @DoubleYouPowell]

@AmandaB55744931 A couple years ago I missed a couple days of LDN and the fatigue was extreme. Crawling up the stairs, laying on the landing, gasping for breath. My activity is still very reduced now (avg ~1100 steps/d), but at least the fatigue isn’t so bad.

[Webb Powell @DoubleYouPowell]

@AmandaB55744931 Yeah, I’ve heard of some people that had to go very low, 0.05, or I think even 0.01 mg, to be able to tolerate it. I don’t know of any predictors for that.

I hope it goes well for you. It hasn’t cured me, but my life is much easier with LDN.

[Webb Powell @DoubleYouPowell]

@AmandaB55744931 (Got interrupted.) I stayed at 4.5 for a couple years. Then a specialist had me increase it further, and I’m now at 10 mg. I gained some further resilience vs. stressors between 4.5 and 9, and at 10 my fatigue is noticeably milder.

[Webb Powell @DoubleYouPowell]

@AmandaB55744931 Can’t say what you should do, but I can share my experience:

I started at 0.5 and went up by 0.5 every two weeks, ending up at 4.5. I felt some small improvements a week or so in. Later on sound sensitivity and fatigue decreased. (Still present, but lessened.)

[Guilherme Nunes @guilhernunes_]

The cat tries to use telepathy to cheat on the test, but the duck didnt study either.

[Webb Powell @DoubleYouPowell]

@liamsLCjourney Me, too. I figured I must have ‘liked’ too many tweets relating to other interests—but my feed hasn’t actually gotten more interesting, just less relevant to me.

[Webb Powell @DoubleYouPowell]

Can’t find the tweet but a pwLC mentioned how quiet the Dreo fan is recently. Got one. It’s pricy at C$60, but at the lowest speed it is indeed very quiet, and still moves a lot of air. The sound is much more tolerable than my other fans.

https://t.co/Y6yi0hNgnk

[Webb Powell @DoubleYouPowell]

@singingsox No paywall, haven’t watched: https://t.co/9sfbGgIBP4

[Webb Powell @DoubleYouPowell]

@singingsox Looks like she has other vids that address lipedema specifically, but some are paywalled.