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Long Covid

Having had post viral fatigue slash ME for a long while previous, I found avoiding carbs, tea, coffee, alcohol made a noticeable difference.
Stress obviously. Generally pacing and gentle exercise such as relaxed cycling and swimming when able really good.
 
Oula said:
My mate with rheumatoid arthritis recommended I completely cut out caffeine, alcohol and sugar for three months. I lasted three days.
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I think with any of those things it's definitely good to cut down, and cutting down is a less intimidating place to start than going cold turkey.
 
nagapie said:
Keto, true keto which is under 30g day carbs generally, is not a healthy diet as such but it is an amazing diet for neurology. Therefore it's interesting to hear when it's helping someone with ME as it is probably dealing with some of the symptoms related to neurological issues. It does need to be monitored if you are on it long term with regular blood tests.
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It seems to be standard procedure at the private doctor I go to for her ME patients. I doubt I'm below 30g though...stopped measuring it ages ago. I should try a sub 30 period and see what happens. Which blood tests do you mean?
 
Brainaddict said:
I think with any of those things it's definitely good to cut down, and cutting down is a less intimidating place to start than going cold turkey.
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He did say at the end not to be intimidated and doing even a bit of the things he suggested would be better than nothing. I don't drink that much caffeine anyway and have cuts down massively on the alcohol.
 
David Clapson said:
It seems to be standard procedure at the private doctor I go to for her ME patients. I doubt I'm below 30g though...stopped measuring it ages ago. I should try a sub 30 period and see what happens. Which blood tests do you mean?
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You're probably on a very flexible version of keto. Are you in ketosis?
I don't know but if on medical keto you have a wide range of blood tests every 6 months.
But you might just be on a low carb diet. Keto is very low carb.
 
I float in and out. Sometimes I eat the wrong thing. E.g. the last few weeks I've been eating fish with lots of sugar in it. Should have checked the label. When I first went into ketosis I was tired initially, then had a big rush of energy and optimism. The doc said that if I went out and in again the rush would not be repeated because my body wouldn't be 'surprised'. I can't remember how she put it, but that was my understanding. Now I monitor myself with my scales. If my weight increases, I'm out of ketosis and I feel sleepy. I've put on 2.5 lbs, partly because of the sugar in the fish, and partly because that sugar gave me sugar cravings, so yesterday I bought a cake. Today I feel half dead. I'm going to start carb counting tomorrow.
 
If you are eating anything with added sugar, you are unlikely to be in ketosis and just benefitting from a low carb diet.
 
Since we're throwing around ideas, here's my most random thing that I find helps. I have always quite liked tonic water, just as a drink by itself (unusual, I know). Since having LC I have found that a small can or bottle of tonic water (light so it has less sugar), really perks me up in the afternoon. Is it the quinine? The citric acid? All in my head? Who knows? I like it. I've tried with refrigerated sparkling water, in case it was just having a cold sparkling drink that was doing it, but it didn't seem to have the same effect. Give it a go if you like, but it possibly won't make the slightest bit of difference to you - I promise nothing!
 
Brainaddict said:
Since we're throwing around ideas, here's my most random thing that I find helps. I have always quite liked tonic water, just as a drink by itself (unusual, I know). Since having LC I have found that a small can or bottle of tonic water (light so it has less sugar), really perks me up in the afternoon. Is it the quinine? The citric acid? All in my head? Who knows? I like it. I've tried with refrigerated sparkling water, in case it was just having a cold sparkling drink that was doing it, but it didn't seem to have the same effect. Give it a go if you like, but it possibly won't make the slightest bit of difference to you - I promise nothing!
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Interesting. I also like tonic on it's own and will try it
 
Had a GP trying to tell me today I had just caught a virus going around...err after 9 months of the same symptoms...what the fuck is wrong with GPs? Ive never met a good one. Have they been told to keep long covid cases off the stats or something?
 
That's so annoying ska invita. My husband's uncle was questioning me the other day about if I was sure the symptoms started when I had covid and i felt he didn't believe me and took it badly. There's a couple of other people in my life who also don't believe in long covid. I find it difficult to talk to them now, because so much of my last year has been dealing with this. What would we talk about?

My GP had actually been really good. I think they see me as a research opportunity. I'm being sent for loads of tests. They also talk to me for half an hour every phone appointment and go through things really thoroughly. I'm sorry yours is being rubbish.
 
ska invita said:
Had a GP trying to tell me today I had just caught a virus going around...err after 9 months of the same symptoms...what the fuck is wrong with GPs? Ive never met a good one. Have they been told to keep long covid cases off the stats or something?
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Sorry to hear that mate, it's incredibly frustrating, and frankly baffling at this point. I don't know what's wrong with these people but my advice is to make another appointment immediately and specifically ask to not see that GP. They generally have different attitudes even at the same surgery. Fwiw I have generally found women doctors to be better at believing their patients, though I'm sure it's not a universal rule.
 
I don't really care tbh, I doubt I can do anything much better with it and I was calling about another matter but thought I'd check if GPs had been given any new Long guidance, maybe heard about some new thing to try. He tried to prescribe me something I was already taking... Maybe spend 30 seconds checking your notes before calling me next time.

26 years of being a GP he told me.
I'll try a different one next time.
 
In positive long covid news - a break from scary stories and Twitter threads. Ive started driving again and I'm moving into my own place next month. Taken a big financial hit with the long covid and not being able to work full or even part time for most of it. But the past 6 months has been better. I'm looking for more work now in fact now that I have more energy. I never got PIP sorted so I really need the income. Just part time locally and somewhere that takes the covid rules seriously. It feels more realistic than finishing my MSc or looking for full time professional jobs for the moment.

The fatigue clinic said they'd support me with this but I dont really know what help to ask for.
 
Riklet said:
In positive long covid news - a break from scary stories and Twitter threads. Ive started driving again and I'm moving into my own place next month. Taken a big financial hit with the long covid and not being able to work full or even part time for most of it. But the past 6 months has been better. I'm looking for more work now in fact now that I have more energy. I never got PIP sorted so I really need the income. Just part time locally and somewhere that takes the covid rules seriously. It feels more realistic than finishing my MSc or looking for full time professional jobs for the moment.

The fatigue clinic said they'd support me with this but I dont really know what help to ask for.
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I suppose they might be able to help persuade an employer that you have a disability and that adjustments therefore need to be made for you. Good luck with that in the private sector tho - the public sector is usually better for actually taking account of disability.
 
Yeah tbh I'm just looking at doing kitchen portering locally or some such like 15 hours a week for the moment. Loads of jobs going. Cant complain about 10 quid an hour plus tips if theres no stress or responsibility and I'm able to live cheap. I am learning SQL and data science skills but really dont feel up to being on laptop all day etc so that's a part time ambition for the future.

I'm certain the long covid clinic peeps will be able to help with going back to uni and getting support for that. I just don't really feel like it at the moment - deadlines pressure intensive learning etc.
 
Riklet said:
Yeah tbh I'm just looking at doing kitchen portering locally or some such like 15 hours a week for the moment. Loads of jobs going. Cant complain about 10 quid an hour plus tips if theres no stress or responsibility and I'm able to live cheap. I am learning SQL and data science skills but really dont feel up to being on laptop all day etc so that's a part time ambition for the future.

I'm certain the long covid clinic peeps will be able to help with going back to uni and getting support for that. I just don't really feel like it at the moment - deadlines pressure intensive learning etc.
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I don't know how your LC presents but if it were me I'd be trying for a job sitting down, like behind a reception desk or security desk or something. Any job standing up would do me in.
 
So yesterday I got sent for a liver and gallbladder ultrasound. I assume relating to long covid but I don't know for sure. It found that I have gallstones. I don't know if this is anything to do with the long covid or a separate issue. It would certainly explain some of the pain, but not all of it I don't think.
I'm so fucked off and down about this. I'm sick of being sick.
 
Oula said:
So yesterday I got sent for a liver and gallbladder ultrasound. I assume relating to long covid but I don't know for sure. It found that I have gallstones. I don't know if this is anything to do with the long covid or a separate issue. It would certainly explain some of the pain, but not all of it I don't think.
I'm so fucked off and down about this. I'm sick of being sick.
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really hope that gallstones stuff get sorted and that helps overall
 
Kabbes posted this on another thread and i think its worth sharing here in case anyone missed it. (fast moving UK thread)

kabbes said:
I get an interesting perspective on the impact of COVID from the kabbess, which is a perspective I’ve just not really heard from elsewhere. She’s currently doing a Masters in regenerative medicine and her main focus of interest generally is cellular damage. She says that the whole understanding that people generally have of what an illness is and what it does to the body is just not really right. People view it as something that turns up as discrete little invaders and then the body fights off those invaders and everything goes back to normal. But that isn’t really a suitable metaphor.

So here’s the bit where I’m out of my depth and attempt to explain what she tells me as if I understand it. So you get the information filtered through my brain, for which I apologise.

Viruses get into cells and even if the virus is fought off, those cells are getting damaged. Damaged in problematic, DNA-altering ways. Damaged cells can become senescent, which means they aren’t working properly any more but they also don’t self-destruct, like normal cells that reach the end of their life. So they sit there, signalling in ways that causes problems and may well cause surrounding cells to become senescent. Effectively, it’s like those cells have aged. So you end up with cells that are kind of “older”, which makes you as an organism effectively “older” too. The problems that accumulate are kind of like the problems of old age. The more this happens — the more you get infected with viruses — the more these problems accumulate.

Furthermore, to create antibodies, the body needs to activate stem cells. These only have a limited number of uses. So every time you have to fight off an infection, you are slightly using up your ability to fight infections. I have to admit that my understanding kind of runs out at this point, but I am left distinctly feeling like you don’t want to have to keep on fighting off infections.

What all this means is that you can’t view yourself like a fortress that just fights off invaders and goes on undamaged. Every fight takes its toll. In a way, every disease has its “long” effect. COVID just seems to be one for which that cellular damage is particularly systematic and extensive. It’s not so much that you “get” something called “long COVID”, it’s more that something like COVID is an extreme example of viral damage. And that means that it isn’t really a question of whether or not long COVID ‘exists’. To ask whether it exists is to view reality in the wrong paradigm. It always does damage, the question is only how much damage it has done and what impact that damage has for that individual both in the short and long term.

My apologies to those who have actual medical knowledge, who might be wincing at some of the way I have put things. I think it’s important, though. It certainly changes my perspective on diseases. It means you can’t be cavalier about disease, ever. Treat your body as if it is the only one you have and it can’t infinitely repair, basically.
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ska invita said:
Kabbes posted this on another thread and i think its worth sharing here in case anyone missed it. (fast moving UK thread)
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This is a way of thinking about it I haven't encountered before and makes me wonder if I know anything about immunology at all. The consequences of it would surely be that the cell damage should be detectable though, assuming we could examine the cells closely enough, and that the reason post-viral fatigue isn't visible on tests is because they aren't looking at the cellular level (though cellular action/inaction could potentially have macro consequences, so perhaps still odd that no tests pick it up).
 
Brainaddict said:
This is a way of thinking about it I haven't encountered before and makes me wonder if I know anything about immunology at all. The consequences of it would surely be that the cell damage should be detectable though, assuming we could examine the cells closely enough, and that the reason post-viral fatigue isn't visible on tests is because they aren't looking at the cellular level (though cellular action/inaction could potentially have macro consequences, so perhaps still odd that no tests pick it up).
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Good point.
kabbes ? Can you ask kabbess?
 
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