Mastodawn

Had to unfollow the #LongCovid hashtag because I was looking for tips on how to manage my long covid but it's just full of people venting their distress that others aren't wearing masks. Firstly, that's not a good use of your energy, even if you're right. Secondly, I don't think it's reasonable to ask people to mask all the time.

Omega_Scribet (has moved)Aug 31, 2023

@peopletrees Yes, I find it remarkable that few tips are being posted, compared to X (in the good old days). Pity.
I've learned not all people like tips (I know there is no one-size-fits-all solution), so I've generally become a bit cautious.

What symptoms would you like suggestions for? Perhaps I have a few for you.

Do you have some tips yourself, Preorg?

Me, I'm always open to suggestions from fellow patients, since doctors are incapable of offering significant help.

Preorg Aug 31, 2023

@Omega_Scribet tbh I have a range of management strategies and supplements I take, so the #LongCovidTips I'd be looking for would be new or emerging ideas, or experience of particular supplements like lactoferrin that I haven't tried. But I would also share beginner tips with people if there was space for it.

Omega_Scribet (has moved)Sep 1, 2023

@peopletrees I'm taking Lactoferrine, 300mg. I've taken up to 900 mg. Free of LPS and 97% purity. Didn't notice any change. When the bottle is empty I'll stop.

Latest I have been trying is stimulating the auricular nerve (Tens), in order to stimulate the Vagus Nerve. (Covid has mostly affected (several of) my nerves).

I have read on X VickyvdTogt has been succesful with getting the right acid-base balance (Low PRAL diet), deap breathing and stretching.
Others were succesful too.

Omega_Scribet (has moved)Sep 1, 2023

@peopletrees I might try that next, though she had more of the typical LC symptoms IIRC. (I have headaches/migraines, ear and eye problems and SFN in lower legs, worsening when physically active/exercising).
She used this list:
https://inaturally.com.au/wp-content/uploads/2020/04/The-PRAL-Table.pdf

She is on Mastodon as well:

https://mastodon.nl/@vickyvdtogt/110196805189572082

PS
BTW, I have tried lactoferrine for about a year now.

Preorg Sep 1, 2023

@Omega_Scribet Thanks, I didn't know about the acid-base balance research

Omega_Scribet (has moved)Sep 1, 2023

@peopletrees Good! I am glad I could point into a new direction. 😃
That's why it is so important, I think, to share ideas, the things we have encountered, and the things we have tried. Succesful and unsuccesful. We all want to improve, even if it is just a little bit. 😃

Which supplements, or things, have helped you the most?

#LongCovid
#LongCovidTips

Preorg Sep 1, 2023

@Omega_Scribet Most is probably antihistamines and flushing niacin, both quite widely used among people with #longcovid. I've also felt improvements with nattokinase and serrapeptase. I had definite improvements with LDN but found it difficult to judge how much it genuinely gave me more energy and how much it acted more like a caffeine boost, taking energy from the future. #longcovidtips

Omega_Scribet (has moved)Sep 1, 2023

@peopletrees Antihistamines helped me big time. Same for benfotiamine, against the internal vibrations in my legs. Salt and potassium were useful against throbbing headaches, but now I am experiencing fierce, stabbing bolts of lightning kind of pains in my head.
I am using NK and SP, dunno if they helped, I think not, but because of the risk of clots I take them.
LDN, I think it helps but progress goes very sloooowly - it definitely helps getting a good sleep. 😃
1/2

Omega_Scribet (has moved)Sep 1, 2023

@peopletrees CBD oil (RAW), and THC oil, because of the affected nerves and nerve pain. Enhances sleep as well. 😃
I am getting B12 injections because of long time B12 deficiency, but have upped them after getting infected with Covid and noticing I got many of the same B12-deficiency symptoms once more.

Those are the things that helped me most.

I completely forgot about flushing niacin, thanks for mentioning it. I'll try it one of these days. 🙏

2/2

#LongCovidTips
#LongCovid

Omega_Scribet (has moved)Sep 1, 2023

@peopletrees Preorg, how much Niacin are you taking, if I may ask. And what brand?

Preorg Sep 2, 2023

@Omega_Scribet 100-150mg, currently one 50g in morning, one after lunch. Health Leads, a UK brand.

Omega_Scribet (has moved)Sep 2, 2023

@peopletrees Oh, that's a good one. Pity it isn't available in my country.
I was also thinking about taking 50 mg. 😃

Thank you! 🙏

Omega_Scribet (has moved)Aug 31, 2023

@peopletrees Perhaps we need another hashtag?

How about #LongCovidTips?

I expect everyone to do their own research after getting a tip. Or to discuss it with a GP. We are all patients and laypeople after all.

Anti. 🐘Aug 31, 2023

@peopletrees The reason why many who have #LongCOVID are concerned about masks is a pretty straight forward one. Since we already had the experience of what this virus can do to us & many of us know that in the great majority of re-infections, the disease can get worse or re-triggered, of course we want to avoid re-infections. But not only for us. Maybe not everywhere, but it is reasonable to ask people to mask in medical facilities (where sick people go) & large indoor gatherings.

Preorg Aug 31, 2023

@antiaall3s I think a discussion of where people should mask and when would be fruitful but there's quite the campaign on here for masking everywhere public like the supermarket. This idea has zero chance of success but many people with #LongCovid are getting themselves very worked up by the failure of the public to listen. I have long covid too but it brings me no benefit to talk about unrealistic goals.

Anti. 🐘Aug 31, 2023

@peopletrees The most complaints i read are for medical facilities, and those are more than merited. They are often not optional places, one must go see doctors at times.

Supermarkets would be nice to have, lots of people, crowds, we must buy groceries. But thankfully we can order online.

The much bigger problem is that some people with LC don't seem to grasp the danger they are in from re-infections. Now there's an issue to get upset about.

Robotistry Aug 31, 2023

@peopletrees You could try starting a guppe group specifically for tips if you want, and using it with relevant hashtags until a community forms.

Are you looking for general support on things like pacing, or specific tips on managing particular symptoms, or help with care seeking, or financial and legal help?