Covid lungs thread 18 weeks plus - thread 2

[LetsBeSensible]

A thread for those with “long covid” experiencing symptoms for around six months now.

Some resources
UK sepsis trust vids m.youtube.com/playlist?list=PL16uJ-CyqxJIJpdLhf-Ccjhdvf4uNBIie
Physio for breathing pattern disorders www.physiotherapyforbpd.org.uk/
Dysautomnia webinar video vimeo.com/442593497?utm_campaign=5370367&utm_source=affiliate&utm_channel=affiliate&cjevent=38c74aa9fd7b11ea82d1002e0a180512
Articles, links, Resources c19recoveryawareness.com
Ricovr project videos

Video 1 - An introduction to the CRESTA team and fatigue
Video 2 - Managing your energy and daily activity
Video 3 - Looking after yourself during your recovery
Video 4: - Activity and fatigue
Video 5: - Question & Answer session on common issues for Covid-19 recovery

Am 9 weeks since infection - am having to rely on an inhaler for first time in my life. Getting episodes of palpitations, have pretty much constant tinnitus and my memory is like a piece of Swiss cheese.

Utterly pissed off with this.

@fedupofbed thanks that movie was superb.

One thing I noticed was the instruction to take non flushing Niacin!?

Did anyone else get that? I hope Were not flushing 3 times p/day unnecessarily ☺️

Here’s the cheat sheet if anyone’s interested

We’re...

Sorry pet peave

Peeve 😫

@MillStone yeah I noticed that. I wonder. I might have got confused with all the chemistry but isn't the NAC something to do with niacin? I understood that taking Nicotinic acid was somehow providing the body with a direct way to produce NAC more easily. But I am by no means knowledgeable about this.

Hi @MillStone thank you for posting the supplement list. Yes I found that confusing too. She specifies non flushing for MCAS (as did Tina Peers) but flushing for compromised energy levels (as did the South African doctors on the article that you posted). I guess now we've got the flushing variety let's see how it pans out... My Quercetin arrived today so just started that and planning on starting the Niacin on Monday. My rash is on the way out so just beginning to build up my supplements again.

@BatleyTownswomensGuild sorry you've got it bad too... it's pants isn't it? I hope you're over the worst and that you improve soon 💐.

Sorry cross posted @TiddleTaddleTat your science is better than mine!

@fedupofbed & @TiddleTaddleTat

Good news on the rash and quercetin!

It’s very confusing. I impulse bought a bag of 1/2 price NAC (and L-Carnatine??) in the Black Friday sale. I might give it a go.

Ahh posted too soon.

Is the niacin to aid NAD+ !?

I don't know @MillStone I'm just too muddled by it all... I just do as I'm told 🤣. I just got temporarily blindsided by NAC and NAD 🤪.

Both the supplements you just impulse bought were recommended for me by the ME specialist a while back. I started l-carnitine a few of weeks ago but hadn't noticed much difference before I came back off everything again - hadn't been on it for very long though. NAC is next on my list to buy!

@fedupofbed 😂 thanks, interesting about the 2 supplements you were recommended!

I just opened the NAC... I’ve never smelled anything like it.

@fedupofbed @MillStone wasn't that article on Medium about NAD deficiency, but the naturopath is talking about NAC?! I think I'm muddled too now. Just going to keep taking what I've got as so far it seems to be working.
I've been sending my naturopath all the links on all the latest stuff but not getting much back. I see that the naturopath on the video does consultations ...
It does seem like there is something quite distinctive about long covid and it feels like now (finally) some wisdom is getting out there about how to practically do something about it.
It's really highlighted the gulf between NHS - and its strength in identifying and treating disease - and alternative therapies - concerning optimising wellbeing.
My GP still has no idea what to suggest. I've been recommended IAPTS about four times for my symptoms.

It's niacin/B3 that's a precursor to NAD+, as is quercetin, see below. I'd like to see some peer reviewed articles but nothing as yet.

www.thailandmedical.news/news/covid-19-supplements-studies-show-that-nad-nicotinamide-adenine-dinucleotide-could-play-a-key-role-in-treating-covid-19-and-long-covid

Yeah @TiddleTaddleTat that's absolutely right. I think the NAC is to help replenish glutathione. I just got all muddled in my head for a bit. Yes the naturopath does seem to be ahead of the game as she seems to have seen and tested quite a few people with Long Covid. I got pushed for therapy too. I did try online CBT but it was completely inappropriate.

Thanks both for clearing that up 👍🏽

NAD, NAC and Tryptophan 📈

Looks like there is a clinical trial set to go ahead along the lines we are discussing, which is promising - clinicaltrials.gov/ct2/show/NCT04604704

Oo that's interesting @TiddleTaddleTat . I've previously read a bit about LDN for possible treatment for ME.

Just ordered Niacin to join you all on the experiment. I had been feeling better over Sept and October but had a big relapse over October half term. I've not since got back to where I was...am using the car a lot more than walking about and my energy levels are so low, I now have mild joint pain in my fingers, feet and legs. And the sensation of being cold/burning.

That being said I seemed to have got the SOB under control...I think for me it isn't lung related and is due to the muscles being tight and weakened around my rib cage. Am back doing diaphragm breathing exercises.

I really thought I'd be better by Christmas, feeling a bit down about it today. Just want to be back who I was or at least have the confidence it would happen

Hi @givemeanother glad you are joining us on the Niacin experiment! I took my first one today (50mg) and got the flush 😳. I'll build up over the next few days.

Sorry you're feeling down, it's hard to stay positive sometimes isn't it? All we can do is take one day at a time. Your trajectory echoes mine as I relapsed about the same time.

My breathing is better now too, as is the angsty clenched jaw sensation that I get a lot. My heart rate continues to rise though and GP has suggested I go back to the cardiologist. I'm thinking of trying to find someone who specialises in POTS though as the cardiologist I saw wasn't particularly helpful. I wish there was a Long Covid clinic nearby....

I've now decided to scale right back on work and go back to basics - lots of proper rest, yoga nidras, etc. I'm already not doing much physically so I'm trying to cut back cognitively too and see if that helps.

Hope everyone else is doing okay. Xx

Thanks @fedupofbed hope it works for you. How long does the flush last? Just so I can plan school pick ups and work calls around it!

I'm no longer flushing after 7 days on the Niacin. It died down after the first couple of days for me.

Oh that's good to hear @TiddleTaddleTat . Do you still feel like you're improving?

@givemeanother I wasn't really checking by the clock but it took longer to come up than expected (about 25 minutes) so thought I'd escaped it! Then it probably lasted about 20 minutes or so.

@fedupofbed yes!! And I'm waiting for my period and have had none of the usual relapse during the build up.

Ooo @TiddleTaddleTat that's so exciting, hope it continues 💪

@TiddleTaddleTat that's really exciting. Keeping my fingers crossed for you. Can you remind me if you're doing anything else new - eg are you also on low histamine diet or taking any antihistamines? I want to try persuade the GP to put me on Famotidine given my reflux symptoms are now back too...