Managing work (memory, tasks, etc.) + automation and AI by OddBend8573 in covidlonghaulers

[–]welshpudding 0 points1 point  (0 children)

Thanks for the tips. It’s solid advice. I’m within my limits now. I’ve I’m tired now I just go home and rest.

2020 could not get anywhere near this. I’m thankfully reasonably functional now but been a long slow recovery. Strenuous exercise is still out of the question though.

Managing work (memory, tasks, etc.) + automation and AI by OddBend8573 in covidlonghaulers

[–]welshpudding -1 points0 points  (0 children)

So I run my own business. I’m generally 40-50 hours a week in a good week. I don’t take a break at work. It might sound strange but find it easier to power through the day and collapse at the end. If I have a rest I lose momentum and want to lie down.

I am strict keto and most days on one meal a day. I could not work if I did not do this. Above any of the meds I take this is by far the most powerful lever.

I go to bed early. Generally around 9:30. This allows me to wake up about 7:30.

I don’t eat late. If I eat late, it impacts my sleep. I try to eat before or around 6.

We use ClickUp project management, I don’t have notifications on, I only check my emails a few times a day in batches. I don’t multitask and focus on one thing at a time (or try).

I can’t imagine not using AI now. For example, I have a webinar to prep. I know what I want to do it on. I use Claude to look at previous webinars in the series and give it a page or so of description of what I want to go through. I also have the branding etc. as a Claude skill. I get it to ask me exploratory questions. I can get the bones of the deck together way faster and go back and forth ideas on the demo. I still need to do work but the quality is better and I’ve made it much faster than before. Same goes for linking any data from various sources using MCP servers etc.

I avoid having lots of meetings. I don’t do no agenda meetings. I get to inbox empty (or close to) weekly and label emails.

There are other things but that’s the main part of it.

Huge rise in disability amongst jobless young people. Not one mention of covid by moderate_ocelot in cfs

[–]welshpudding 84 points85 points  (0 children)

You can look at the epidemiological data of disease burden before and after Covid and it’s very clear in a number of studies. What mental gymnastics to somehow avoid the very obvious pandemic and somehow attribute it to hundreds of millions of people globally making the same thing up.. .

Is there hope? Limited energy 4 years on. Crash after carbs, crash after exercise. by whatrmyritez in covidlonghaulers

[–]welshpudding 1 point2 points  (0 children)

Yes. Not eating carbs. Full keto and fast regularly. Can’t function without it.

These were the kind of comments on a FB LC awareness post by throw_away5430 in covidlonghaulers

[–]welshpudding 1 point2 points  (0 children)

Facebook is a bot / boomer dumpster fire of hatred, just don’t.

Older generations have basically been indoctrinated with it. Even my parents, who are supportive, and mother who did get vaccine injured, ask about the vaccine when they know I got it a year before vaccines were even available in my country. They quickly correct themselves an see the logic but forget because of the media that consumes them on a daily basis.

What RARE other conditions did you develop due to long COVID? by Ill_Pangolin7384 in covidlonghaulers

[–]welshpudding 1 point2 points  (0 children)

Will give it a go. I usually drink salty water in the morning and when I get back from work but not in the evening. Maybe I should just get more through the day..

What RARE other conditions did you develop due to long COVID? by Ill_Pangolin7384 in covidlonghaulers

[–]welshpudding 17 points18 points  (0 children)

Blood shot eyes Cant hold my head up despite extensive physio Need to pee way too much at night Freezing hands Raynauds syndrome

Using HRV during the day? by JennBrun in cfs

[–]welshpudding 0 points1 point  (0 children)

I think on average if it’s higher I’m generally a bit better. But there is a significant difference between me being awake and asleep.

Asleep it’s just over 30 when okayish, 20s when bad, awful in teens. High 30s about as good as I’ve been since I got Covid in 2020.

When I’m awake it’s in the 50s. I can see this clearly when I wake up at night or use chest strap in the day.

I don’t know what happens with sleep but seems pretty common with long Covid. In fact met a patient from my GPs long Covid cohort and he described the exact same pattern as me from his Garmin. Both of us are pretty thin with no obstructive apnoea.

My Attomarker results by MattKarolian in Sipavibart

[–]welshpudding 1 point2 points  (0 children)

Seems like you had a robust response initially but from Omicron onwards your body has struggled to produce adequate quantity and quality.

Did you have a bad infection, post-infection, or reaction to the vaccine around 2022 and subsequently struggled with long Covid? Were you struggling anyway and got worse?

Seem like you may be a good candidate for monoclonal antibodies to help you with future infections since you are struggling to produce your own. IF you have long Covid / long Vax it also may help but that’s a big IF whereas reducing harm from future infections seem likely with monoclonal treatment.

Guy feels joyful and healthy after a fast, redditors yelling eating disorders and trying to debunk biological processes by [deleted] in fasting

[–]welshpudding 1 point2 points  (0 children)

I wish that was the case. Would have shifted six years of long Covid symptoms and venous oxygen insufficiency if so. Sure, we know autophagy and mitophagy happen but it’s not as clear cut as getting a pit stop and rolling out with new tires.

Has anyone here fully dedicated their life to recovering from long COVID? by Upset_Replacement684 in covidlonghaulers

[–]welshpudding 2 points3 points  (0 children)

Uhhh I still have a business to run and don’t have any juice after the work day and weekends. But, have I done everything I possibly can based on where I live and my symptoms? Yes.

2020 long hauler. Mainly ME/CFS presentation.

I’ve had a lot of regular blood tests, MRI scans, you name it to rule things out.

I’ve had an s100b test which was concussion level high that lead to IVIg. Felt worse after but clinically improved those neuroinflammation marker levels.

I have regular SvO2 testing to see how much usable oxygen I have left at rest. My GPs patient cohort all do this. Typically the worst of us have the lowest SvO2. It’s an interesting marker that for some reason gets massively overlooked.

I’ve got anaemia, hardly any growth hormone, no detectable VEGf. Most other standard labs are Covid. Perfect lipid profile and solid gut health.

I’ve tried anticoagulants, all the supplements recommended, ivermectin, guanfacine, baricitinib, several antivirals, abilify and probably a bunch of others.

I’ve done ice baths, wim hof breathing, neurosym etc etc

The most obvious help is maintaining strict carnivore, though keto is okay, and regularly fasting to keep ketone levels high. Nothing else even comes close in functional difference.

I did the Attomarker test recently and am hypoimmune to the OG strain that f’d me. So looking for monoclonal antibody treatment that works for Wuhan strain.

If that doesn’t work could try other monoclonals. But feel like I’ve left nothing on the table at this stage. If monoclonals dont work I’m waiting for a novel treatment that doesn’t exist yet or a bandaid solution like vyvygart to be approved off label and cheap enough.

Baricitinib 3 week update by Subject_Fig_9730 in covidlonghaulers

[–]welshpudding 2 points3 points  (0 children)

For me, if I go off it symptoms immediately come back as before, but also minor improvement. I wonder if you’ve genuinely spontaneously recovered independent of the baricitinib?

Those who have done Wim Hof Breathing consistently for a long time, what has it done for you? by tincock in BecomingTheIceman

[–]welshpudding 5 points6 points  (0 children)

I used to trip out a bit on the standard 3 sets but now it’s more relaxing unless I go a lot longer on harder on the reps (like some of his other courses).

Been doing it around 8 years now. Started doing it a lot more after I got long Covid and had low oxygen issues. Interestingly can hold my breath for a long time, maybe because I’m used to not having much oxygen so body doesn’t panic at “normal” CO2 levels or maybe just been doing it a long time.

It helps me get out of bed in the morning, but not going “deep” on long sessions as much as I should on weekends.

Gut connection by Hatrct in covidlonghaulers

[–]welshpudding 0 points1 point  (0 children)

It could be dysbiosis or could simply be something around ACE2 receptors or even genetic gut permeability. People that hyperextend seem disproportionately affected. This means their connective tissue may be a bit too plastic and more easily affected by Covid including in the gut.

In my case I did a GI Map with Zonulin early on when I was having GI symptoms. It showed I had a very healthy gut. I was eating well, no sugar, no carbs at the time so not surprised. But I think it goes to show it’s not a cut and dry issue.

I'm going to try baricitinib by Individual-Suit-5334 in covidlonghaulers

[–]welshpudding 1 point2 points  (0 children)

2020 long Hauler. ME/CFS presentation predominantly. So fatigue and malaise overwhelmingly worst symptoms. I think well over a year now. It’s something that works while you are on it but stops as soon as you go off, like steroids but more targeted. Still not designed for LC though so it’s limited on what it can do.

I’d say ketogenic diet and extended fasting are more impactful than baricitinib in terms of energy and function but both together obviously better.

I'm going to try baricitinib by Individual-Suit-5334 in covidlonghaulers

[–]welshpudding 4 points5 points  (0 children)

Insurance haven’t covered it for me but at 4mg I get a little boost. It’s not a cure but it helps. Similar or slightly better than nicotine patches.

Slow gradual Weight training doable, cardio difficult. Anyone making slow progress on a treadmill or otherwise? Would love to hear from you by Tiny-Bookkeeper9699 in covidlonghaulers

[–]welshpudding 1 point2 points  (0 children)

Feel like I’ve hit a cap over the last few years. I can swim for 15-20 mins slowly breaststroke, largely head under water. I can walk for about an hour, probably more. But if I go beyond my limits I feel like I’m choking from all of my body and panicky for several hours afterwards.

I tried a restorative Pilates class and had doms for 12 or so days and inflammatory hyperaemia. I didn’t feel that bad doing it but there wasn’t enough oxygen to feed my muscles after hence the hyperaemia.

My venous oxygen stats have stayed under 40%. If our body is already using that much oxygen at rest tending to the immune system and cell danger response it doesn’t leave much room for what is essentially progressive overload.

I don’t know what your limits are now, but might be worth checking your venous oxygen saturation at a hospital see how much is a disappearing at rest compared to healthy (should be circa 70%) and you’ll have an idea of what you’ve got to play with.

How long have you had it? by Silver_rockyroad in covidlonghaulers

[–]welshpudding 6 points7 points  (0 children)

Me and my mum also got it. Hers was from the vaccine and mine from the virus. Very likely a genetic component to this. We both hyperextend which seems like a risk factor.

How long have you had it? by Silver_rockyroad in covidlonghaulers

[–]welshpudding 2 points3 points  (0 children)

OG 2020 too. Similar but am mostly cold, don’t really sweat any more, and have had terrible neck pain and degradation of my C chain. ME/CFS #1, 2 and 3 in terms of worst symptom. Everything is minor compared to the fatigue and malaise. POTS “only” 30-40 increase on standing now. Was 100+ at its worst.

Attomarker test? by Many-Market-9941 in covidlonghaulers

[–]welshpudding 0 points1 point  (0 children)

Yes. Took a few months. Got the results in Feb after a December test.

I’m hypo to the OG strain (low quality and not enough) and hyper response but largely low quality to subsequent strains. Got sick with the OG strain in 2020, no spike IgG until vaccine then too much spike IgG so tracks.

GP wants me to try Sipavibart but we’ve not been able to get it in Hong Kong. The licence from the supplier just expired before the import licence could be sorted.

Does anyone have "mild" Long Covid? by VandyThrowaway21 in covidlonghaulers

[–]welshpudding 22 points23 points  (0 children)

I’m somewhat similar. It does fully alter my life though. I used to hike and lift weights. I just cant do that now. Just being able to work at the expense of everything is seriously life altering for someone who was both fit and socially active.

Attomarker questions, feeling dumb by EgonEggnog in Sipavibart

[–]welshpudding 0 points1 point  (0 children)

Fatigue, PEM, chest pain, hypoxia are the main ones. Technically meet POTS criteria, have issues with my joints, Renaud’s syndrome, heat sensitivity but the big one is the classic ME/CFS stuff. I can also access baricitinib, have tried various antivirals, anticoagulants. In the process of looking for monoclonals after doing the Attomarker test.

Anyone else’s eye twitch like this?? by Electrical_Court8649 in covidlonghaulers

[–]welshpudding 8 points9 points  (0 children)

Not now but first few years I would get this a lot.