'Long Covid' / 'Covid Long-haulers'

Nice. Hope something comes of it - the 2-day CPET test for M.E./CFS patients was like the most obvious "hey look, something is pretty wrong with these people" thing we had for years and years, and researchers who worked on it pointed at poor clearing of lactic acid in patients that couldn't be accounted for with deconditioning.

I know she can't really say it, but I really wish I knew what protocol she was on that she said she got an improvment with! Or, you know, maybe she did and I'm just too fucked to parse/understand it. But I hope it goes somewhere. I hope something goes somewhere sometime soon.

She walks through it here, with many caveats. https://mastodon.nl/@vickyvdtogt/110202237846457614

I'll be honest this is strongly triggering my quack-radar.

As the body gets rid of excess acid through the urine, I figured that dramatically increasing my overall water intake would be a good idea.

I also added alkalizing electrolyte drops (bases) to every glass of water.
...
Simply put: lemons are acidic, but they produce bases upon digestion.

Edit: as does much of the recommendations here. Including that Ben Coomber blog. Homeopathy, reiki, energy healing? FFS.

Thanks @wence! and yeah, agree with chez_jay, unfortunately, sounds like a load of old balls to me too. If it was genuinely as easy as nuun, veganism, and a bit of yoga I don't think any of us would be in the position we are. Ah well, there's always the next one.

Off to try some hyperbaric oxygen therapy this week, will report back. Meditation, yoga, rest, good diet and cold showers doing the most so far. I don’t think there’s going to be a silver bullet any time soon.

Thought this was a good read for people wondering about nattokinase.

https://pharmd.substack.com/p/frequency-asked-questions-nattokinase?fbclid=PAAabFBrv207KIO4GqeQ5HmLmNkBGxfALCU0ix-CfqVPamBjjSVukao06ggvA_aem_th_AW4yfR5vV0_6jCLubxjg_dMyQV-g8XKudpqA1MbyOK0hH0VwM-NNkXW_8cLA8FPHmXI

So I finally got assigned a Covid-19 'understanding your brain fog' group session with psychologists/neurologists after being promised something similar for about a year.

I'm sure it was great, but I could barely remember it, as it was fast paced 2 hours over MS Teams (no other options offered) which I'm now unfamiliar with. Recording was prohibited, and they hadn't thought it might be a good idea to supply slides in advance. And despite asking in the session, chasing and chasing, I never got the slides afterwards, either.

So I've put in a complaint that a session for people with cognitive impairment, about cognitive impairment, by specialists in cognitive impairment, does not meet the NHS Accessible Information standard. Amazing 👍

On the upside, been offered £100 so far for an upheld complaint about accessibility from one of my financial providers, and I'm going to hold out for more, as they don't seem to have met their own accessibility standard while dealing with the complaint.

Wow. That sounds extremely disappointing and frustrating.

Frustrating, sorry to hear. I’ve had good progress recently with daily cold baths (5 mins at ~18C, which is about as cold as I can get it at the moment with frozen bottles of water). Bit grim especially with the lack of summer weather but definitely takes the edge off the symptoms

How did you get on with the Hyperbaric Oxygen Therapy?

Much the same with me - only things that seem to help are rest, good quality sleep and good food.

Not sure if classed as long-covid, but my wife has been ill from the first dose of the Astra-zeneca vaccine.

A week after the vaccine, she had a "grey out" and has been suffering from neurological (and other symptoms) ever since. the symptoms include brain fog (or feeling drunk), balance issues/swaying sensations, visual issues (particularly sensitivity to light and movement). The doctors/consultants have been are pretty certain that it was triggered by the vaccine, but obviously can't attribute it 100%.

Tbh, its been a fucking nightmare since day one. I love the NHS, but they really didn't know what to do with her and we have had to really fight to a) first get anyone to do anything and b) someone to take responsibility for her case. I think the main issue is that my wife came down with so many symptoms and this all triggered a number of different illnesses that it made it difficult to make a diagnosis.

We fought for an MRI, which showed she had lesions on her brain, they first diagnosed her with multiple sclerosis and started her on treatment for that. Then told her it wasn't. Then they tried to tell her there was nothing wrong with her (in spite of the brain lesions). Then they told her she had FND. Two of the top UK experts on FND told her that she didn't. The other neurologists then still insisted that she did have FND and tried to pass her on. She's now been told that the lesions are the result of a stroke. We know for a fact that another MRI that was done in March this year, stated that the radiologist thinks she had a stroke, no one told us this officially because the consultant that ordered the MRI left the trust and no-one took on my wife's case. She saw a consultant (not a neurologist) about another issue in August and my wife asked them to look at the scan results because we hadn't had them back yet and he said "well according to this, you've had a stroke". That Dr made the referral and we're awaiting an appointment with the stroke clinic, 2.5 years after this started off.

She also developed heart irregularities, after much fighting again and moving around hospitals and being told there was nothing wrong, she's been told she has POTS (postural orthostatic tachycardia syndrome) and also "other" autonomic function issues.

The vaccine has also triggered autoimmune urticaria, which means every so often she breaks out in hives all over her body. We don't know what triggers each episode still.

Our local NHS trust hasn't been good (Epsom and St Helier), neither was UCL, but she is seeing a neurologist at Kings and also consultants at St Georges and they have been so much better and have taken her more seriously, but it's been such a struggle to even get this far.

Just want to be clear, we're not anti-vax (my wife is a vet) and we have no issue with getting vaccines for ourselves or our kids.

That sounds fucking rough and quite similar to the problems my ex developed from COVID itself and some of the struggles she's had getting bounced around between different diagnosis and treatments due to people not knowing what the actual problem is and her now being allergic to most of the available drugs.

I was back in the UK recently and reconnected with an old school friend. He caught covid two years ago and has been fucked ever since. Career down the toilet, on benefits and with very little medical or psychological support moving forward.

It's a fucking disgrace and shows how close to losing everything you are if your health suddenly fails. Unless you're very wealthy the safety net doesn't seem to exist.

Sorry to read this. I'm in a similar boat. Given the inadequacies of the vaccine damage payment scheme, have you considered consulting with a solicitor? Feel free to PM me if you'd rather not respond here.

This sounds awful...

We fought for an MRI

Can I ask how you did this (or access to neurology in general)?

Just completing about 6 months of Long Covid occupational therapy. My OT (who has been great) has tried to refer me to LC Neurology clinic and it's been turned down, which is rather surprising and upsetting. Will apparently be offered a physical/mental managing long-term symptoms course in another 8 months instead.

I've also been on a '3-4 month' waiting list for LC psychologist for a while, as the psychologist job is vacant... have just been vaguely told to go to charities (who also have long, indeterminate waiting lists) in the meantime.

Feel I've got a front-row seat to NHS collapse.

PS, re:

I've put in a complaint that a session for people with cognitive impairment, about cognitive impairment, by specialists in cognitive impairment, does not meet the NHS Accessible Information standard. Amazing

Zero response (just a lot of promises) after a couple more months, more chasers, informal complaints and internal escalation- so I've finally put in a formal complaint quoting NHS accessibility policy, just so I can get a Powerpoint file of the only neurological support I've had in 1.5 years...

So sorry, didn't see this.

Literally because she just ended up in A&E 5 or 6 times in a few weeks and they didn't know what to do and each time she asked for an MRI, eventually they caved in.

Hey no worries on that - I am behind with messages too!

That is awful. I don't know what else to say.

Cross posting this here as thought some people may have experience of this drug https://www.lfgss.com/conversations/133278/?offset=8500#comment17496311

With the sad news about potential forum closure, now seems about the right time to write this and spread some positivity. I’m pretty sure I’m better. It’s taken about two years and cost an awful lot financially and emotionally. Still a lot of fitness to get back, but doesn’t seem to be any real lingering effects. There’s so much stuff out there, but time, calming the CNS and LDN helped me the most. Good luck to anyone else out there still going through it. It’s brutal in a way that no one else can understand, but you will get better. Lots of people are, they just tend not to post about it. Peace.

Could you please give a bit more detail on LDN?

Also, I know you meant it to be positive, but as a counterpoint, I am getting worse after 2.5 years. And several people I know aren't getting better. They aren't necessarily posting about it either.

I'm just about to start on LDN btw for my EBV/post viral fatigue. Will report back in a while on here

👍