Long Covid

[Carvaged]

Perhaps some of the very specific detail from this example might be of use to you? ie the sort of specialised tests that revealed things others missed.

Long Covid: 'I have to choose between walking and talking'

People say their lives have been ruined by long Covid, amid fears the number of sufferers is rising.

www.bbc.co.uk

I've been discharged back to my GP now they've cured me with their startling insights. So I might test a bunch of drugs on myself. I don't think I'll make much progress talking to them, they're well meaning but a bit dim and low on ideas.

 

[Brainaddict]

In case anyone is interested I recently added high dose Vitamin B1 (1000mg a day) to my high dose B3 (150-200mg a day) and felt more energy and more clear-headed afterwards. Still taking 5-htp too.

 

[kabbes]

So I might test a bunch of drugs on myself.

I would strongly suggest you don’t do this. Drugs have tonnes of off-target effects and some of them can be incredibly serious and long-lasting. The last thing you want to do is compound your problems.

 

[elbows]

I would strongly suggest you don’t do this. Drugs have tonnes of off-target effects and some of them can be incredibly serious and long-lasting. The last thing you want to do is compound your problems.

For example:

The review found that around one in five hospital admissions in the over-65s are caused by the adverse effect of medicines as well as 6.5 per cent overall. It also recommends further research into why overprescribing disproportionately affects older people, people with disabilities and ethnic minorities.

Ministers to crack down on overprescription of medicines on the NHS

Government-commissioned review finds 10 per cent of drugs prescribed by primary care doctors are not wanted or needed

www.independent.co.uk

 

[Brainaddict]

I would strongly suggest you don’t do this. Drugs have tonnes of off-target effects and some of them can be incredibly serious and long-lasting. The last thing you want to do is compound your problems.

Often true, but the reality is post-viral fatigue is so debilitating and mentally challenging, and so poorly catered for by medical science, that people are very likely to try out things that a doctor wouldn't prescribe. Rather than telling people not to do it I would recommend a fairly cautious approach to it - there are some lower risk things to try.

The supplements I take are aimed at increasing cell energy production. I take Vitamin B1 and B3 way above RDAs, which means they're more or less being taken as drugs. I've tried my best to research whether doing this might have long term negative effects or side effects.

Some people try low dose naltrexone with some success. It's an off-label use but because the doses are so low the risk of side-effects seems fairly low (though not non-existent - do some research first). SSRIs have also been tried with some success by a lot of people - usual side-effects.

The above have a history of use so you can check out others' experience of them, and if you do a bit of research and understand the risks you may find it worth it and get some benefits. And also don't do frog poison like one of my friends.

Carvaged if you want to try a supplement specifically for brain fog I'd suggest trying Acetyl L-Carnitine. It's another supplement for cell energy production but there are quite a lot of anecdotal reports of it being good at clearing brain fog.

 

[kabbes]

Before you use a drug, you really need to understand its mode of action. If you’re messing with something that affects metabolism at the cellular level, that could actually exacerbate fatigue. If you’re messing with seratonin reuptake then be aware that seratonin is one of the most widely distributed neurotransmitters in the body, used within loads of systems that are nothing to do with the brain. Taking additional vitamins is unlikely to screw you up but actual drugs have often been designed for do-or-die situations and are prescribed in combination with other drugs intended to mitigate their off-target effects. You shouldn’t just take them without knowing the pharmacology .

 

[zahir]

Thread on long covid and cognition

 

[wemakeyousoundb]

a small study on the smell loss thing long term

Anecdotally I hear of someone who graduated from everything smell/taste of rotten meat (april 2020) to it all taste/smell of coconut (recently)

 

[Carvaged]

Often true, but the reality is post-viral fatigue is so debilitating and mentally challenging, and so poorly catered for by medical science, that people are very likely to try out things that a doctor wouldn't prescribe. Rather than telling people not to do it I would recommend a fairly cautious approach to it - there are some lower risk things to try.

The supplements I take are aimed at increasing cell energy production. I take Vitamin B1 and B3 way above RDAs, which means they're more or less being taken as drugs. I've tried my best to research whether doing this might have long term negative effects or side effects.

Some people try low dose naltrexone with some success. It's an off-label use but because the doses are so low the risk of side-effects seems fairly low (though not non-existent - do some research first). SSRIs have also been tried with some success by a lot of people - usual side-effects.

The above have a history of use so you can check out others' experience of them, and if you do a bit of research and understand the risks you may find it worth it and get some benefits. And also don't do frog poison like one of my friends.

Carvaged if you want to try a supplement specifically for brain fog I'd suggest trying Acetyl L-Carnitine. It's another supplement for cell energy production but there are quite a lot of anecdotal reports of it being good at clearing brain fog.

I think you're right. I also don't object to kabbes input, I think it's very sound advice for most people. I have a background in pharmacology and medicine so have more access to drugs than most and am on slightly firmer ground trying stuff out on myself, but even so I'm very cautious about what I do to myself and necessary disclaimers must apply to others.

I've tried various neutraceutical protocols like yourself but had limited progress so far, although I won't give up as I think it's a sound low-risk approach and is typically healthful, regardless of whether it helps with long covid or not. I'll probably add some ALC to my next batch of 'brain powder' as I have a couple bags of it in the cupboard. One thing to bear in mind with ALC is that it's poorly bioavailable (I've made some SubQ injectables of ALC before, but they sting like crap even in a good buffering solution!), and can potentially cause some issues with gut bacteria/atherosclerosis ingested orally, but that's not really a biggie in the wider scheme.

If the issue for many of us is fairly specific micro-clotting due to various inflammatory processes though, I have a feeling we may have to wait for some new treatment insights and approaches (and maybe new meds/antibodies) before finally getting things under long-term control.

 

[Edie]

I think you're right. I also don't object to kabbes input, I think it's very sound advice for most people. I have a background in pharmacology and medicine so have more access to drugs than most and am on slightly firmer ground trying stuff out on myself, but even so I'm very cautious about what I do to myself and necessary disclaimers must apply to others.

I've tried various neutraceutical protocols like yourself but had limited progress so far, although I won't give up as I think it's a sound low-risk approach and is typically healthful, regardless of whether it helps with long covid or not. I'll probably add some ALC to my next batch of 'brain powder' as I have a couple bags of it in the cupboard.

If the issue for many of us is fairly specific micro-clotting due to various inflammatory processes though, I have a feeling we may have to wait for some new treatment insights and approaches (and maybe new meds/antibodies) before finally getting things under long-term control.

I really would not recommend prescribing for yourself if you’re a medic. If you do, make a record and tell your own GP. And never prescribe a controlled drug for yourself. If you aren’t transparent, as you’ll know, your fitness to practise will be called into question. It’s not worth it eh. You can’t and shouldn’t try and be your own doctor. You know this, right?

 

[Carvaged]

I really would not recommend prescribing for yourself if you’re a medic. If you do, make a record and tell your own GP. If you don’t, as you’ll know, your fitness to practise will be called into question. It’s not worth it. You can’t and shouldn’t try and be your own doctor. You know this, right?

I wouldn't be able to prescribe for myself, as I think you must know And also I'd prefer if people didn't assume I was a doctor or anything else, I make no claims to anything and just mentioned I had a background for explanatory reasons. But for all intents and purposes I'm just a bunch of mindless pixels on a screen and could be entirely full of shit, just like anyone else.

If some of you find what I type interesting or useful, great. If some of you are offended by what I might choose to do to my own body, that's also great, but do bear in mind that I'm certainly not recommending anyone else copy me. Regardless, I don't consider it reckless to occasionally explain to others some of the things I'm doing or trying (though I probably won't unless I found them helpful, post-hoc). They're certainly no more harmful that what millions do every day to themselves smoking, drinking, taking drugs, driving cars, skydiving etc. Life involves many risks, unfortunately, and for those of us with long covid disabilities, we're sometimes prepared to take some (measured) risks in order to try and reclaim control of our own bodies and minds.

 

[Edie]

Well I do consider it to be bad advice. For others and for yourself.

(Ftr you can prescribe for yourself as a doctor- as in, it’s possible- but it’s not advised, you should document it and why, and tell your GP. At least that’s what MDU/MPS say).

 

[Chilli.s]

you can prescribe for yourself as a doctor- as in, it’s possible

I've met a few doctors that were well keen on self prescribing. One of them took so many pills that they would rattle like a maraca when going downstairs

 

[Carvaged]

Well I do consider it to be bad advice. For others and for yourself.

I'm not offering advice and have been quite particular about that. Describing (some of) what I'm doing or have done - particularly in the vague terms I've chosen to use - cannot be construed as advice to others and I think it a little disingenuous to say it does. Why do we even chat online if not to talk about and share experiences or describe the things we think or do? Given that, I think it reasonable to credit other adults with the capacity to take at least some responsibility for their own actions, given the panoply of information on attempted treatments for long covid that already exists online. For me to censor myself entirely out of fear that others lack the capacity to think and make choices for themselves and would recklessly copy my actions would be an absurd overreaction, particularly in that context.

I've met a few doctors that were well keen on self prescribing. One of them took so many pills that they would rattle like a maraca when going downstairs

That's depressing. Different trusts and CCGs have different rules on this, and it can also vary depending on the healthcare setting (hospitals vs GP surgeries etc). Usually you can only self-prescribe for certain specific emergencies, and these would appear on your medical record and your GP would know anyway; in other circumstances it's possible to create private prescriptions, but to say it's frowned upon is an understatement, and you really just wouldn't. Plus any decent pharmacist would likely clock drug-seeking behaviour from a medic, and that's also not a situation you'd want to be caught in. Which is not to say there aren't some ways around this so technically yes, it can be possible.

But honestly, you'd make life easier to just go to your own GP and come up with a bunch of sound reasons why you might need to be prescribed x, y or z, assuming you understand the prescribing criteria well (many doctors actually know fairly little about drug pharmacology), and they'll likely agree. And even with something as speculative as treating long covid, assuming your GP or specialist is reasonable and open to logic, they might agree off-label use (depending on NICE criteria).

***

None of this applies to me though, and I'm not advocating anyone do anything simply because I explained that I may trial some treatments on myself at some point as a last resort if things don't improve. Honestly, part of the reason I even mentioned it was just venting frustration, moreso (sorry for being human), though drugs like colchicine (which has been discussed as part of a long-covid treatment regime for its specific anti-inflammatory potential) I already have and use for a different condition, so it wouldn't be difficult to access and trial.

 

[Edie]

Best of luck with it then

 

[two sheds]

Long Covid: doctors find ‘antibody signature’ for patients most at risk

Low levels of certain antibodies found to be more common in those who go on to develop long Covid

www.theguardian.com

Doctors have discovered an “antibody signature” that can help identify patients most at risk of developing long Covid, a condition where debilitating symptoms of the disease can persist for many months.

Researchers at University hospital Zurich analysed blood from Covid patients and found that low levels of certain antibodies were more common in those who developed long Covid than in patients who swiftly recovered.
When combined with the patient’s age, details of their Covid symptoms and whether or not they had asthma, the antibody signature allowed doctors to predict whether people had a moderate, high or very high risk of developing long-term illness.

interesting link to asthma

 

[zahir]

Long Covid study finds abnormality in lungs that could explain breathlessness

Findings raise possibility Covid may cause microscopic damage not detected by normal tests

www.theguardian.com

According to Dr Emily Fraser, a consultant at Oxford university hospitals and a co-author of the study, the latest findings are the first evidence that underlying lung health could be impaired.

“It is the first study to demonstrate lung abnormalities in [people with long Covid] who are breathless and where other investigations are unremarkable,” said Fraser. “It does suggest the virus is causing some kind of persistent abnormality within the microstructure of the lungs or in the pulmonary vasculature.”

 

[ska invita]

seems very very vague that thing - my understanding of what they are saying is: we cant find anything physically wrong but clearly people are breathless, so maybe the damage is so small we cant see it?

 

[Brainaddict]

seems very very vague that thing - my understanding of what they are saying is: we cant find anything physically wrong but clearly people are breathless, so maybe the damage is so small we cant see it?

I think they're saying they've measured gas transfer abormalities within the lungs. I don't know how significant that is. To my knowledge a lot of people with long covid have normal oxygenation levels in the blood, which suggests the problem is not at the lungs. The research on poor transfer of oxygen from blood to muscles and organs that some CFS research has turned up seems a more promising line of investigation.

 

[2hats]

(CUHK) A paper concerning an investigation of the gut microbiome and the role it might play in long COVID.

Analyses of stool samples obtained from hospital admissions indicated that long COVID patients had a less diverse and less abundant microbiome. Convalescents who didn't develop long COVID had a gut microbiome similar to that of people without COVID-19. Lack of "friendly" immunity-boosting Bifidobacteria species was strongly associated with persistent respiratory symptoms.

New findings:

• Our results show that an individual’s gut microbiome profile may affect their susceptibility to long-term complications of COVID-19.
• Gut microbiome pattern reflects different symptoms in patients with post-acute COVID-19 syndrome (PACS).
• Distinct gut microbiota composition at admission is associated with occurrence of PACS at 6 months.

These findings provided observational evidence of compositional alterations of gut microbiome in patients with long-term complications of COVID-19. Further studies should investigate whether microbiota modulation can facilitate timely recovery from post-acute COVID-19 syndrome.

DOI: 10.1136/gutjnl-2021-325989.

 

[ska invita]

(CUHK) A paper concerning an investigation of the gut microbiome and the role it might play in long COVID.

Analyses of stool samples obtained from hospital admissions indicated that long COVID patients had a less diverse and less abundant microbiome. Convalescents who didn't develop long COVID had a gut microbiome similar to that of people without COVID-19. Lack of "friendly" immunity-boosting Bifidobacteria species was strongly associated with persistent respiratory symptoms.

DOI: 10.1136/gutjnl-2021-325989.

Foods with bifido

Certain foods are abundant in it, including:

yogurt with added cultures
kefir, a fermented milk drink
buttermilk
fermented foods including kimchi, tempeh, miso, and pickles
cured meats
certain wines
sauerkraut
sourdough bread
some vinegars

 

[Riklet]

Foods with bifido

Certain foods are abundant in it, including:

yogurt with added cultures
kefir, a fermented milk drink
buttermilk
fermented foods including kimchi, tempeh, miso, and pickles
cured meats
certain wines
sauerkraut
sourdough bread
some vinegars

Most of those foods are very high in histamine. I avoid all of them aside from cured meats and vinegar (dont eat dairy as much as possible, pickled or fermented food, dont drink booze, avoiding wheat and always thought sourdough bread is a load of manky shit anyway.. so shoot me

Interestingly (maybe) I have not really suffered any respiratory issues with my covid. No breathlessness. Just sometimes tight chestedness, but not much nowadays.

While this is interesting research I doubt it's as simple as "eat those foods" as the gut microbiome is an incredibly complex thing they're only just starting to understand. I have my own views about diet, which have worked well for me though but I try not to be too extreme.

Brief update on my recovery... after 2-3 months working in a restaurant kitchen part time I got quite burnt out with stress and a fatigue relapse. Have spent the past 4 weeks in Madeira with a friend that lives here and its been banging... and very good for me. Been dog walking and doing mini runs, swimming in the sea, having lush fresh food and getting sunshine. Even hired a car and did some driving around for a week (still cant drive for more than 30 mins really). Went to an open mic gig and jam last night with loads of people outside.. was so cool! Things are a bit up and down but mostly been goooood!

 

[Brainaddict]

Yeah, I tried massively increasing the fermented foods I was eating for a bit but it didn't make any difference so I stopped. I haven't found anything to work with diet, though I admit I never really tried the low-histamine diet cos if I cut out all those foods life would barely feel worth living. But also I never responded to anti-histamines so decided that wasn't it.

The diet thing is really difficult because people can get such a positive boost from taking control of their diet that they are always convinced it is The Answer, but it could possibly have worked whatever diet they tried. If I wanted a 'taking control' diet I would do cutting out refined sugar as that is my worst vice and is no good for energy levels, but I haven't had the motivation yet.

 

[2hats]

Off topic, but one should not of course assume all probiotics are necessarily advantageous in all circumstances. For example:

Gut bacteria linked to immune suppression in pancreatic cancer

Researchers have shown how probiotic bacteria in the gut could undermine immunity in pancreatic cancer, pointing toward more personalized cancer treatments.

www.sciencedaily.com

 

[Hollis]

Big article in NY Times on this

How Long Covid Exhausts the Body

 

[Brainaddict]

Big article in NY Times on this

How Long Covid Exhausts the Body

Yes, this is a good summary of some of the recent research and thinking. It's actually a pretty big step forward to have it described in mostly physical terms without lots of qualifiers about the mental health of the people who have it. Obviously people with long covid/post-viral fatigue have mental health issues because their way of life got destroyed, but a large number of doctors still see the causality flowing the other way. So I'm pleased to see articles like this.

NB. I think it possible that mental/bodily stress may be a causal factor in some long covid cases, but only one of several factors. What I don't think is that people's beliefs about their own health are a main factor, except for a very small minority of people who might be claiming all sorts of illnesses for themselves.

 

[existentialist]

Yes, this is a good summary of some of the recent research and thinking. It's actually a pretty big step forward to have it described in mostly physical terms without lots of qualifiers about the mental health of the people who have it. Obviously people with long covid/post-viral fatigue have mental health issues because their way of life got destroyed, but a large number of doctors still see the causality flowing the other way. So I'm pleased to see articles like this.

NB. I think it possible that mental/bodily stress may be a causal factor in some long covid cases, but only one of several factors. What I don't think is that people's beliefs about their own health are a main factor, except for a very small minority of people who might be claiming all sorts of illnesses for themselves.

One of the biggest problems with our mainstream healthcare systems is that they tend to treat things in isolation - if they're looking at Long Covid, they're probably carefully not looking at psychological predispositions, etc.

 

[Brainaddict]

One of the biggest problems with our mainstream healthcare systems is that they tend to treat things in isolation - if they're looking at Long Covid, they're probably carefully not looking at psychological predispositions, etc.

We've disagreed on this before so let's not let it go on too long. But I would say that all they have hypothesised and sought for decades in response to post-viral fatigue is psychological predispositions, and it was largely not helpful.

Edit to add a reference for what has been the dominant model in the UK: Biopsychosocial model - MEpedia

 

[elbows]

Yeah its one thing to look at psychological aspects if we had a wonderful level of knowledge and body scanning that can pinpoint every physical issue in every person. Quite another to default to that stuff at a time when there are still huge gaps in knowledge and detection of physical causes.

 

[Brainaddict]

Also I think we haven't talked much about genetic predispositions on here yet, but I've thought about it since my brother came down with long covid last year, a little over a year after me - his has manifested in basically identical ways to mine, even though at a population level the range of LC symptoms is very broad.