Long Covid

[Blue Jam]

Thanks

Blue Jam, take some time off, please. The less you do, the better you'll recover.

Thanks @purlieu. Last week I spent the whole of Thursday as a fully paid-up member of Do Nothing Club and felt all the better for it. Might have to have a meeting with my boss. I guess I'm actually very lucky that she's also got long Covid and is much more understanding than most bosses. I just hate this feeling that I'm burning daylight and not working on interesting projects in a job I genuinely love.

I'm a lucky sod really aren't I? At least I'm no longer on a zero-hours contract getting screamed at by people at a call centre. I just don't feel that lucky right now.

Planning on working from home and doing some slow, lazy baking tomorrow, might do me some good.

[purlieu]

It can be difficult living for tomorrow rather than today. Every time you find yourself thinking you're wasting time, just remind yourself that by doing this, you'll be able to do much more in the long term.

And, most importantly, don't see it as burning daylight. You might not be consciously doing much, but letting your body heal is maybe the most valuable use of your time, ever.

There's a lot of research going into the treatment, but I'm still yet to see anything about the why. Clearly getting people well is a priority, but I'm really curious to know if and when we'll discover exactly why some people's bodies respond like this. Not only would it help identify people at risk of developing it and similar disorders in the future, it would also stop me from sitting here wondering why the fuck my body is so fucking useless that it can't get over the same illness that billions of others have.

[Blue Jam]

Thanks for the helpful posts @purlieu . I can relate about the feeling useless- it isn't helpful, but it's hard not to beat yourself up while all around you people are bouncing back from this and carrying on as before.

Just spoke to my GP who has referred me for blood tests. Going to get tested for coeliac disease too because it shares a lot of symptoms with long Covid. I fucking hope that one comes back negative, I bloody love gluten.

[Crenners]

Best wishes to you both. I don't come in here really these days but my GP mate said that doing as little as possible is the best way to get better. Hope for good recovery soon.

[purlieu]

Thank you :)

@Blue Jam - good luck with the tests. I had mine over a week ago and no word now so looks like there are no underlying conditions, will be ringing the doctors again on Monday for my long Covid clinic referral so I can tell them I'm eating healthily and pacing and nothing else can be done.

Big announcement of a study at an ME/CFS conference in the US a couple of days ago which has confirmed a lot of findings from past studies as well as identifying a potential predictive factor for long Covid, ME and fibromyalgia.

A large study of long-COVID patients who'd been sick for well over a year found numerous immune aberrations including high levels of monocytes, exhausted T-cells, and the presence of double-positive T-cells.

High levels of anti-coronavirus antibodies indicated that even after all this time the patients' immune systems were still responding to the virus – either because it, or parts of it, were still present or because an autoimmune or inflammatory response to it remained. The coronavirus wasn't the only virus the immune system was responding to – high antibody levels and markers of activation suggested that herpesviruses, in particular, EBV and varicella-zoster, have become reactivated.

The factor that REALLY differentiated the long-COVID patients from the healthy controls, though, was low cortisol. Iwasaki called the low cortisol levels "highly predictive" and noted that they alone were enough to determine who had long COVID and who was healthy. They were also predictive of severity: the lower the cortisol levels – the worse off the long-COVID patient was. Normal ACTH levels left the reason for the low cortisol levels a mystery. I don't think anyone thinks low cortisol levels are "it" in long COVID and ME/CFS – these are complicated multisystemic diseases – but it sure showed up big time in this study.

The cortisol and EBV findings fit very well with ME/CFS. They also fit well with what we know of overtraining syndrome in which a plethora of endocrine abnormalities (blunted and late GH (growth hormone), reduced cortisol and prolactin responses to a central stimulation test, reduced testosterone), as well as hypometabolism, have been found.

Encouragingly, they also appear to fit well with Deeks's massively complex 2021 long-COVID study which also highlighted low cortisol and EBV reactivation.

Iwasaki warned that more studies need to be done to confirm her findings, but it's very good to see two such complex studies come to similar conclusions – and to have those conclusions match what we've seen in MECFS and fibromyalgia.

So in addition to a constantly active immune system trying to fight off Covid still, we have reactivation of numerous existing viruses in the body and low levels of cortisol. Also a reminder that there are a lot of people who have long Covid despite having an initially asymptomatic infection.

It's such a headfuck, isn't it? There have now been numerous studies and they're all generally coming to the same or similar conclusions, which makes me hope that we're close to a general agreement on the mechanism of how long Covid is affecting the body - if not why this is happening - and thus to further study on treatments. Having a much worse day today and it's horrible thinking that there are millions of others around the world in the same boat.

[purlieu]

A study at Oxford University is currently investigating the use of amino acid intake to help repair damaged mitochondria; initial clinical tests have apparently been promising, and although it won't necessarily cure long Covid, it could potentially make significant improvements in symptoms. That study ends this month, so I'll be looking out for the results there.

Although showing no increase in phosphocreatine compared to placebo, AXA1125 did result in improvement in mental and physical fatigue, with some patients reporting a return to normal after the trial. Even if this doesn't get to the root of the issue in the immune system, it looks like a real possibility as a first medical treatment for the condition. They're now seeking approval for a larger, regulated trial in the hope of getting it onto the market as soon as possible.
https://www.reuters.com/business/healthcare-pharmaceuticals/axcella-long-covid-treatment-helps-some-patients-small-trial-2022-08-02/

[Blue Jam]

Went for some blood tests today, GP wants to rule out things that aren't long Covid but also wanted to get me tested for coeliac disease. That certainly would explain a lot of the symptoms- and there's some evidence that, like a lot of immune disorders, coeliac disease can be triggered by a viral infection. In particular, Covid...

No more beer and bread? Fucking thanks, Covid. Fortunately I already bake a lot of my own bread so I should be able to adapt, but it is just one more thing I could do without. Really hoping the test comes back negative.

What an absolute bastard of a disease. It's almost as bad as that disease you can get from American tick bites that makes you allergic to steak.

[All Surrogate]

Well, if you have coeliac disease, you're in the right line of work to find a cure!

Sorry, you must get that everytime you have any kind of illness.

Anyway, I hope it turns out you can continue to consume bread and beer.

[purlieu]

My blood tests all came back fine - despite a fucking atrocious diet for most of my life, my blood sugar levels are at totally normal levels, somehow - but as my symptoms include shortness of breath and chest pains not all alleviated by my new inhaler, I have to have an ECG and chest X-ray next week to make sure there are no other complications there. And then I'll be given the diagnosis and will spend the next year or so on a list getting no help whatsoever as there isn't any until some sort of treatment actually comes along. The Doctor said I was doing all the right things and was impressed with how proactive I was being, which was both positive in terms of reinforcement and negative in terms of confirming that there's nothing else I can do.

[Blue Jam]

Well, if you have coeliac disease, you're in the right line of work to find a cure!

Sorry, you must get that everytime you have any kind of illness.

Anyway, I hope it turns out you can continue to consume bread and beer.

Cheers AS, and gluten-free bread and beer exist so I'm golden. Was actually feeling pretty down about this earlier and bought some gluten-free bread and crackers just to see how bad they could possibly be and it turns out... they're actually quite nice these days, this could turn out to be a piece of piss. You can even get gluten-free Paxo, Kit-Kats and Old El Paso fajita kits FFS! Hey, I could try brewing my own gluten-free beer, this could actually be fun.

Also I have known three coeliacs in my life and they've all been skinny Minnies, so that could be a plus too.

My blood tests all came back fine - despite a fucking atrocious diet for most of my life, my blood sugar levels are at totally normal levels, somehow

I get a similar surprise here whenever I get blood tests, cholesterol and blood sugar are always surprisingly normal for someone with crap genes and a sweet tooth. The one I always worry about is liver function, and the possibility of seeing PISSHEAD ALERT flash up on my GP's computer screen.

Hope you get sorted out too xxx

[purlieu]

Proper clinical trials of Tollovid on long covid patients to start this autumn:
https://www.proactiveinvestors.co.uk/companies/amp/news/989898

If this produces as positive results as they're currently claiming then it could be available to patients next summer.

[purlieu]

First patient trial with antivirals!
https://www.biospace.com/article/releases/virios-therapeutics-announces-dosing-of-first-patient-in-imc-2-long-covid-treatment-trial/

Wasn't expecting anything like this until at least early next year, and although it's early days, the speed at which these trials are going ahead is very reassuring.

[madhair60]

really hope it comes to pass as speedily as possible.

[purlieu]

Study into orthostatic intolerance in people with Long Covid and ME.

Orthostatic intolerance is generally defined as the experience of unusual symptoms – such as dizziness or feeling faint – after standing that are relieved by reclining.

While many people experience this to a degree during normal activities, orthostatic intolerance is often more pronounced in illness states, and can result in a fast heart rate after standing (postural orthostatic tachycardia, or POTS) and/or a drop in blood pressure (orthostatic hypotension).

Surprise, surprise, the results came up as showing it is indeed present in people with these conditions.

In the two patient groups, particularly those with long COVID, the NLT caused a marked and progressive narrowing in the pulse pressure, as well as a worsening in all three cognitive measures of reaction time immediately following the NLT. In addition, long COVID and ME/CFS patients experienced a deterioration in their symptoms following the tests.

[Crenners]

Interesting. I've had plenty of dizziness after standing since Covid a few weeks ago and my bro was diagnosed with labyrinthitis. It's not so bad for me once I get going but it's notable even now. Hope you're feeling much better very soon.

[Blue Jam]

Best wishes to you both. I don't come in here really these days but my GP mate said that doing as little as possible is the best way to get better. Hope for good recovery soon.

Meant to say thanks, Crenners. Threnners.

Blue Jam, take some time off, please. The less you do, the better you'll recover.

Cheers again- and I am now doing this. Been signed off werk for two weeks. Boss still has long Covid symptoms herself so is being very understanding. Just going to do lots of long walks and eat healthy food and not drink much alcohol and watch as much snooker as I can consume. Already feeling better for having slept well two days in a row, got a lot more sleeping planned.

Cheers everyone, and I hope you're all doing well x

[purlieu]

Just going to do lots of long walks

!!!
That's not taking some time off. Let your body rest!

Got the all-clear on my chest X-ray and ECG today, so I have my formal "you have long Covid" appointment with the GP next week.

Another paper concludes low cortisol, exhausted t-cells, viral persistence and reactivated EBV all likely causes of long Covid symptoms. The most notable part of the article for me:

Putrino and Iwasaki say it's time to forge ahead with new trials of potential therapies, which could also elucidate Long Covid's causes and whether subsets of patients are more likely to respond to certain interventions. Iwasaki's experimental therapy wish list is long and includes cortisol supplementation; Epstein-Barr virus–targeting therapy; the antiviral drug Paxlovid, now used for acute COVID-19; and even therapies that deplete B cells, which are used to treat autoimmune disease and calm the immune system.

"We should be trying these right now," Iwasaki says. "As a basic scientist, of course I'd like to have all the pieces of the puzzle" before launching trials. "But the patients, they can't wait."

It definitely feels like there's a real desire to get some sort of treatment as soon as possible. I'm still having some real difficulty, especially as I wake up each day feeling ok, mentally, and then within the first couple of minutes I remember and it's like being punched in the face. I've had a couple of moments where I've really felt that I can't face another 12-18 months of waking up to that every day (if I didn't have my girlfriend I might not be here right now). As someone who's relatively lucky - I have people to look after me and no responsibilities like kids, rent, job, etc., as well as understanding the condition and how to respond to it better than a lot of people - I cannot imagine how people who have worse symptoms than me and/or more a difficult living situation can actually cope with this, so I'm very glad that the scientific world seems to be really pushing this, even if the mainstream is completely ignoring long haulers still.

[jamiefairlie]

EBV seems to be root cause of so much chronic illness. If they can direct efforts to eradicate that then it would be massive.

[purlieu]

Indeed. Once again it's fucking abysmal that it hasn't already happened.

Had my long Covid clinic referral today. So I suppose I'm now 'official'. Given how under-resourced they are I doubt I'll get to speak to anyone for a few months yet (a friend who lives around the corner had to wait around six months for her first appointment), my hope is by that point they might have started doing things like blood tests to identify the presence of the various biomarkers so I'll at least have an idea of what my body's doing and what potential treatment I'll be given in the long run. But it'll probably just be a chat about eating well and pacing.

[purlieu]

More evidence for the damaged immune system-related blood clot theory:

The study found that the blood of patients with long-Covid had higher levels of a blood-clotting booster called von Willebrand Factor (VWF), and lower levels of a protein that normally breaks down VWF, called ADAMTS13.

Their analysis also suggests that blood vessels were still being damaged long after the initial infection, and that specific cells of the immune system were at abnormal levels in patients with long-Covid.

"In this study, we examined 50 patients with symptoms of long-Covid syndrome," said Dr Fogarty, lead author on the paper in the Journal of Thrombosis and Haemostasis.

"We saw that, in patients with long-Covid, the normally finely tuned balance of pro- and anti-clotting mechanisms were tipped in favour of blood clotting.

"Our analysis also suggests that abnormal clotting and disturbed immunity go hand in hand in long-Covid. Together, these findings may help explain some of the symptoms of the syndrome."

https://www.independent.ie/irish-news/health/people-with-long-covid-have-blood-clotting-imbalance-irish-research-team-discovers-41931979.html

[purlieu]

A couple of weeks ago I reached a low point. I was crying several times a day and honestly questioning whether I could go on like this. I was desperate, so I decided I'd buy some Tollovid. It's expensive and still marketed as a food supplement, so it was really clutching at straws.

And... it works. I've just finished my five day course and I'd say my fatigue has decreased by maybe 90-95%. It's hard to tell, because I'm so fucking out of shape, having not done anything for four months, and I've also been pushing myself the last couple of days to see if this really is working. Absolutely no post exertional malaise after a 30 minute walk at my rather fast pre-Covid speed today. My muscles were definitely resisting a bit on the way back, but that felt like unfitness and not really like any of the symptoms I've had for the last four months.

The downside is my muscle and joint pains are still present, albeit reduced. This suggests that I'm probably not fully cured; some people are reporting complete recovery after five days, but the clinical trials that are starting in a few weeks are for 30 day courses. So I'm expecting to relapse this week, if I'm honest. I'm going to look at the options of trying to buy 30 days' worth, although it's going to cost a lot. But whatever happens, I now know that my body isn't permanently damaged, and that it's possible to get better. And even if I relapse in the week, I'll have had a few days of near-normality, which has been like heaven. Just feeling limber and energetic again has been amazing; I had no idea just how bad my symptoms were. It was like a huge caffeine boost just being awake.

If you're struggling with long Covid and can afford it, buy some. It took a couple of weeks to come but I somehow missed the customs charge.

[Blue Jam]

Seriously considering this. Is a five day course really enough?

Been feeling a lot better since packing in the gluten and taking time off werk to do absolutely fuck-all, but I can't do the latter all the time.

[purlieu]

Some people are reporting complete recovery after five days, others are needing longer. I went with the one bottle because deep down I didn't really think it would work, so it was just a trial. I really wasn't expecting to go from bedbound and crawling around at a snails pace to having as much energy as I did before this shitshow in about four days. It's still difficult to get my head around.

There are some people for whom it hasn't worked, and obviously you need to prepare for the fact that you might need to fork out for a longer course. But I'd definitely give it some serious consideration if you can get the cash together.

[jamiefairlie]

A couple of weeks ago I reached a low point. I was crying several times a day and honestly questioning whether I could go on like this. I was desperate, so I decided I'd buy some Tollovid. It's expensive and still marketed as a food supplement, so it was really clutching at straws.

And... it works. I've just finished my five day course and I'd say my fatigue has decreased by maybe 90-95%. It's hard to tell, because I'm so fucking out of shape, having not done anything for four months, and I've also been pushing myself the last couple of days to see if this really is working. Absolutely no post exertional malaise after a 30 minute walk at my rather fast pre-Covid speed today. My muscles were definitely resisting a bit on the way back, but that felt like unfitness and not really like any of the symptoms I've had for the last four months.

The downside is my muscle and joint pains are still present, albeit reduced. This suggests that I'm probably not fully cured; some people are reporting complete recovery after five days, but the clinical trials that are starting in a few weeks are for 30 day courses. So I'm expecting to relapse this week, if I'm honest. I'm going to look at the options of trying to buy 30 days' worth, although it's going to cost a lot. But whatever happens, I now know that my body isn't permanently damaged, and that it's possible to get better. And even if I relapse in the week, I'll have had a few days of near-normality, which has been like heaven. Just feeling limber and energetic again has been amazing; I had no idea just how bad my symptoms were. It was like a huge caffeine boost just being awake.

If you're struggling with long Covid and can afford it, buy some. It took a couple of weeks to come but I somehow missed the customs charge.

Amazing, congrats! Where did you buy it from?

[purlieu]

I think the only place you can get it online is the Todos medical website: https://mytollovid.com/en-gb

[purlieu]

Update: no muscle or joint aches today.

Edit: two hours later, I feel 99% better. This is still very difficult to get my head around.

[jamiefairlie]

I think the only place you can get it online is the Todos medical website: https://mytollovid.com/en-gb

Cheers.

[Blue Jam]

FYI, the discount code

TOLLO10

will give you 10% off.

Just hovering over pulling the trigger now. Just had another crash and needed a nap right now and I'm so effing sick of this.

[purlieu]

Aches are back today so probably going into a relapse. Looks like I'll be working out how to pay for a month's worth. A little scary given a) the cost and b) I might still relapse again after that.

[Blue Jam]

Any chance you could take the maintenance dose- ie, two capsules per day? Or maybe even one a day, make the bottle last two months? I see some reviewers on Amazon have been doing that. If I get this I'd like to ration it out, 12 capsules per day sounds a bit much. I'm sure it's safe but does anyone really need to get through their supply that quickly (and order more)? It's a slow-release formula isn't it? Surely if you have viral reservoirs in your intestines you won't need that much to nuke them.

It really was worth it though huh? Had another crash yesterday and needed another long nap, getting really fucking sick of feeling like I have jetlag every couple of days. I feel like the last four months have been a write-off workwise and I can't go on like this. Getting pretty desperate myself.