COVID long haulers – how are you getting on?

For the long hauliers, was it a sudden onset, or gradual? Also with the loss of smell, is is it all smells, or just some?

For me it was a weird sort of initial part recovery, was feeling much better, then walking to the cafe on a flat rail trail, I got hit by proper can barely walk fatigue crash. Went into limp mode. Got home 50 metres at a time and went downhill from there. Recovery has been slow and very bumpy. I do think I tried to do too much too soon initially – my HR had been massively elevated and once it dropped to near normal, I thought I was ‘okay’. With hindsight I’d have been more cautious, but who know if it would have made any difference. 

One positive thing is that my sense of taste and smell has been mostly unaffected as far as I can tell. 

I got OG COVID back in Mar/Apr 2020 as I was recovering from a concussion. Basically, my concussion symptoms (brain fog, fatigue, sensory issues) that had been improving reset themselves and have never really recovered. Almost four years in and I’ve learned to manage it reasonably well – I need a nap most days to reset my brain and I also need to plan a day or two completely off if I’ve got something taxing happening. Yesterday was a total duvet day after a first aid course over the weekend.

I’m really lucky that I was insured against income loss so I managed to leave the teaching profession to re-train in something more home based. The silver lining has certainly been more time to spend with my young kids.

Unknown to me at the time, I must have been exposed on my last working day (Sat) before annual leave. Took my road bike as planned to ride the lovely lanes and hills around Longleat Centerparcs, developed a sore throat on first night (Mon) that got really sore as week progressed, my legs felt a bit achy on the bike but I put that down to “last minute training” before the hol. Thought I simply had a head cold once I got the sniffles and headache, so by mid holiday I stopped trying all-out efforts on hills and took things steady.

It was only the day after we got home (Sat) I even thought about doing a test in case it was covid, instant positive on way up. Felt like I was getting better over Sun and Mon, did some light cycling, but Tues morning I felt much worse than any day previous since symptoms began. I finally got a negative covid test result two weeks after the first, but exhaustion; weakness and breathing continued (thankfully breathing improved early summer ’23). Didn’t return to work to do a shift again, still feels so surreal, as I was getting personal bests and even some top tens on segment leaderboards during ’22 upto and including Liz’s funeral day.

Same as Scud, Covid triggered my T2 diabetes, symptoms started the morning I tested positive, raging thirst, weight loss etc, although I ignored them thinking them to be Covid related, by the time I got tested I’d lost two stone and had a hab1c of 138, so stuck with it for life, sugars are now in the normal range but that requires good diet, plenty of exercise and lots of drugs, the only difference from pre diabetes is the drugs as like most on here I’m pretty healthy and always moved around a lot.

Add my 2 ps worth –

Now all or none of this may be related and at 45 I am square in snipers alley sights-  But since first covid early 2020– Ive had Covid toes (look it up) – Pins and needles and loss of sensation in fingers and wrist – Pluracy – Blue lighted with Atrial Fib and a Resting heart rate of 178 Bpm to Harefield heart hospital – Herpies Simplex keritits is both eyes (Cold sore in each eye) .. and major lack of resilience to common colds

Some of this may be work and stress related – but never been so unhealthy in such a short space of time.

I now have serious problems concentration and get WAY more fatigued and tired than i than I used to (Was nicknamed Zebadee as i couldnt sit still and thats all i want to do now) and have lost most of my drive to train (Used to gym or Run/Bike every day) From 6 hrs a night of sleep being normal and fine Im crashing in the afternoon.

Some of this is life and Lifestle as a single parent and business owner …. But By christ im certain whatever covid was had a role to play (To add my symptoms at the time were mild compared to to others – Mild fever and the rest for a few days.

Anyway still soldering on

18 months in with Long Covid now, wasn’t too bad to start with, then went down to working 4 days a week, then 3 days a week (work a day, rest a day), but then had to stop work.  Very slowly improving, brain fog is the worst, an e-bike is a big help.

Just listening to Radio 4 and they trailed this which is on later today, but already seems to be listenable online:

https://www.bbc.co.uk/programmes/m001vzy9

Why recovering from long Covid is a lot like training for the Olympics
Inside Health
Laura Foster visits the UK’s first long Covid clinic to find out what we’ve learnt about the condition – and whether we’re any closer to seeing the end of it.

Well as per my entry a couple of years ago above, T2 diabetes is genetic in my family following illness, 3-4 people have it due to cancer normally.

In the weeks after having COVID first time, my blood glucose rose up and up, til i was diagnosed a fortnight after, i know what i had not suffered it prior to COVID as my daughter is T1 and i knew the symptoms.

At first no doctor took me seriously that I felt the two were linked, I declined medication and for 2 years i controlled it well enough with just diet and exercise that i was taken off diabetic register within 2 months of diagnosis and all was good, weirdly I was probably the fittest i’d been since I left the army, exercising 10-15 hours a week.

Had COVID again beginning of December ’23 and it knocked me for six again, all the diabetic symptoms back, brain fog, neuropathy in hands and feet, blurred vision and extreme fatigue straight away.

Taken me til last week to again get it back under control, its hard work trying to put in 10 hours of exercise and have a really clean diet, when all you want to do is curl up in a ball and sleep to be honest.

Something about COVID that some reason kicks my ar*e when it comes to blood glucose control, but at least take it seriously now.

Well it seems I may been joining the gang.  I’ve been feeling rubbish for a good few years now, been trying all sorts.  Mostly put it down to the IBS that I suddenly developed.  After a year of trying all sorts of stuff with diet and basically sacking off exercise as it destroys me, back to docs a couple of weeks ago.  Waiting on the usual bloods etc… but his diagnosis is long covid, and from what I can tell its tough, learn to live with your body being shagged.

Not feeling particularly positive.  Also wondering if ‘long covid’ is now the default answer to the generally unwell – bit like it seemed ‘stress’ was pre covid.

This is an interesting paper on POTS and its relation to Long Covid, would be interesting to get an opinion on it from Tired.

Possible Role of Fibrinaloid Microclots in Postural Orthostatic Tachycardia Syndrome (POTS): Focus on Long COVID

I’ve been looking through papers that I pretty much cannot follow, apart from the conclusions, as my mums best mate was one of the very few who suffered severe complications with blood clotting and organ/lung damage from the initial covid vaccine that put her in hospital for months, was touch and go for a few weeks.  She still suffers from severe exhaustion/breathlessness and cannot walk very far which for a lifelong hill walker is bloody annoying, her consultants at Dumfries infirmary have basically told her they don’t know what’s wrong with her body/immune system and they’re out of ideas so she’s got to live with it.

PS : Edited multiple times attempting to fix the small text, WTF is going on with the forum changing it?

This is an interesting discussion with Professor Robert Clancy and Dr John Campbell exploring the characteristics of long covid.

 

https://www.youtube.com/watch?v=-Ea3UwYZnrA

 

And here’s a follow-up discussion which goes more into new discoveries in treatment for long covid.  Very promising, it seems to me, and well worth a watch, but do your own research, as always.

 

https://www.youtube.com/watch?v=qWlf7sbomMQ

 

There are also protocols for treatment of covid and long covid at the FLCCC (Frontline Covid Critical Care Alliance) at:

https://covid19criticalcare.com/

It may be a good conversation but it’s got (not a dr) john Campbell in it,

Very promising, it seems to me, and well worth a watch, but do your own research, as always.

Watching a click hunter on YouTube is as much research is as Dr. Campbell holds a PHD in medicine.

I’ve done some ‘research’.

https://time.com/6278831/ivermectin-americas-frontline-doctors-lawsuits-covid-19/

I can’t complain too much, as so many people have experienced much worse, but I’m gutted that the hearing loss I got with my COVID infection last year appears to be permanent.

When we were still getting boosters, COVID was an unpleasant two-week illness for me. But I’m in my 50s and was too young for last autumn’s booster, and when I got COVID at the beginning of November it was a bad as the first time – a 3 month slog of wheezing, fatigue, and other symptoms. Including deafness this time.

It’s a symptom worth going to the doc about, as I was able to get a lot of hearing back with a course of steroids. Just not all of it.

At least the booster situation will change soon. For a fee, of course:
https://www.theguardian.com/world/2024/feb/02/pharmacies-in-england-and-scotland-to-offer-private-covid-jabs-for-45

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7649937/

“N-Acetylcysteine to Combat COVID-19: An Evidence Review”

NAC is a precursor of glutathione, a potent antioxidant of the body. It has been shown to help with various viral infections (influenza and covid included), and is used as an antidote for paracetamol overdose as it protects the liver from damage. Also has been used as a daily medication for Chronic obstructive pulmonary disease for decades, so its use has been shown to be safe. NAC is available to buy cheaply in powder form.

https://pubmed.ncbi.nlm.nih.gov/34262324/

“N-Acetylcysteine as Adjuvant Therapy for COVID-19 – A Perspective on the Current State of the Evidence”

I have gone through covid now 3 times – first one really bad in 2021 with after effects lasting several months, and during the latter two I took dual daily doses of NAC and vitamins D, B6 and B12. I also take daily nattokinase and vitamin K2 to decrease risk of micro-clots that covid can cause.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6043915/

“Nattokinase: A Promising Alternative in Prevention and Treatment of Cardiovascular Diseases”

Nattokinase has dangerous interactions with blood thinners and also aspirin (which is an anticoagulant too) so it must not be used together with these classes of medicines. For others it can be helpful in maintaining circulatory health.

Also, this study was interesting (from 2023) –

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10663976/

“Clinical Approach to Post-acute Sequelae After COVID-19 Infection and Vaccination”

“Viral and vaccine-encoded spike proteins have been shown to play a direct role in cardiovascular and thrombotic injuries from both SARS-CoV-2 and vaccination. Detection of spike protein for at least 6-15 months after vaccination and infection in those with post-acute sequelae indicates spike protein as a possible primary contributing factor to long COVID. We rationalized that these findings give support to the potential benefit of spike protein detoxification protocols in those with long-term post-infection and/or vaccine-induced complications. We propose a base spike detoxification protocol, composed of oral nattokinase, bromelain, and curcumin. This approach holds immense promise as a base of clinical care, upon which additional therapeutic agents are applied with the goal of aiding in the resolution of post-acute sequelae after SARS-CoV-2 infection and COVID-19 vaccination. Large-scale, prospective, randomized, double-blind, placebo-controlled trials are warranted in order to determine the relative risks and benefits of the base spike detoxification protocol.”

Free full text available.

“It may be a good conversation but it’s got (not a dr) john Campbell in it,”

In fairness, most of the conversation comes from the Professor.

“Watching a click hunter on YouTube is as much research is as Dr. Campbell holds a PHD in medicine.

I’ve done some ‘research’.

https://time.com/6278831/ivermectin-americas-frontline-doctors-lawsuits-covid-19/      ”

Sure, you’ll find a huge range of attitudes to ivermectin if you google it. As for myself, I’m a bit suspicious of the use of “right-wing” when applied to doctors in this way, it suggests the article has an agenda.

I posted what I posted as I just wanted to draw attention to what seem like promising recent work in the field of long covid in a thread about it, hoping it might be of use/interest to some people. Ignore it by all means.

You joined a cycling forum just to spread dodgy links?

Nearly as bad as not disclosing a conflict of interest

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8947948/

Currently laid out with an infection. Covid makes recovery from minor illness more protracted for me. My HR in the velodrome this week has the kind of spikes that I can only hope are artifacts, but so match high efforts  where I attacked the bunch (think 240 bpm) . Smell gone for good, taste not much better. Now retraining as I’m resting to try and recover.

ivermectin is for deworming livestock. At the doses necessary for antiviral activity, you’ll be poisoned. You’ve been warned. Mind you, worms won’t be a problem.

“ivermectin is for deworming livestock.”

Your implication that ivermectin is for animals only is false. Or fake news as we say nowadays. It has been given in doses in the billions to humans.

Here are its uses under its wiki entry:

“Medical uses

Ivermectin is used to treat human diseases caused by roundworms and a wide variety of external parasites.

Worm infections

For river blindness (onchocerciasis) and lymphatic filariasis, ivermectin is typically given as part of mass drug administration campaigns that distribute the drug to all members of a community affected by the disease. Adult worms survive in the skin and eventually recover to produce larval worms again; to keep the worms at bay, ivermectin is given at least once per year for the 10–15-year lifespan of the adult worms.”

And so on.

 

But there’s been such a campaign of misinformation about it over the last few years that it’s understandable that you have been duped.

 

“At the doses necessary for antiviral activity, you’ll be poisoned.”

Ivermectin has been repurposed for use with covid and long covid. Its mechanism of action in this role (for example in the US observations mentioned by Prof Clancy in the video mentioned above that it can “de-clump” agglomerations of red blood cells) is unlikely to be the same mechanism of action that applies when it’s used as an anti-parasitic. And it’s (probably) not acting as an anti-viral in this role either. Consequently, speculations about likely toxic doses etc are a bit pointless.

But there’s been such a campaign of misinformation

Like the nonsense you post. Time for you to go.

Did doc99h understand who he is arguing against?

No, I guess we could have let it continue for comic effect to see Doc99h get roasted, but I had enough of his nonsense.

More ‘It’s the just the flu’ content.

https://uk.news.yahoo.com/researchers-discover-underlying-cause-brain-114054928.html

I don’t know if more understanding of the mechanisms behind so-called ‘brain fog’ and memory problems directly leads to a treatment, but hopefully the wider public will start to get an idea of the way that Covid-19 can assault a variety of body systems, rather than just being a respiratory virus.

It appears that in my case it may have led to the development of long QT. Appointment booked with the top man in the UK later in the year, but been off work for six weeks and will be for some time yet.

At least my heart is structurally fine, but electrically it now resembles one of the horror story DIY jobs you see on YouTube where a kitchen fitter has done the wiring.

I thought I’d responded to the OP but can’t see my post, so here is the gist.

Had LC since March 2020. Recovery has been slow but consistent. I’ve made lots of lifestyle changes.

I’m now about 95% in day-to-day life and around 75-80% in my athletic life.

I’m more hopeful now that I’ll get back to ‘normal’ than i was before. But it won’t be for another couple of years.

For those who took time off work to recover, did it help? I’ve been experiencing long covid like symptoms since November following a virus, I’m going through the process of ruling things out with the GP at the moment but the fatigue and brain fog are making work really challenging. It’s a desk based job thankfully but it’s mentally challenging at the best of times, and if I take time off most of my tasks just won’t get done, making it even more difficult when I do go back.

I had 7 months off work – wasn’t really an option as I couldn’t have worked. Similar style of job to you by the sound of it. Time off work absolutely helped!

It sounds like you’ve maybe got it quite mild at the moment if your still working – better to take time off now, get healthy and avoid getting another bout of covid and crashing into long covid severity.  That’s what happened to me on my third covid infection.

First infection was mild. Second one, I was off work for 3 weeks plus long covid symptoms started. Struggled on for around 6 months (just about managing at work at the expense of everything else in life). Covid infection 3 dropped when I was already struggling and it plunged me into the abyss and was off for 7 months. Most ill I’ve ever been in my life.

Back at work now, full time, however, my sporting life is completely gone. Hoping it comes back slowly but it’s been a year since my 3rd infection and i’m still only able to walk without consequences the next day.  Having formally been pretty fit, running and cycling 3 times a week, it’s a life changing experience.

I would prioritise your health over work – plus if you end up with severe LC then you’ll be off work for way longer.

Had LC since March 2020. Recovery has been slow but consistent. I’ve made lots of lifestyle changes.

I’m now about 95% in day-to-day life and around 75-80% in my athletic life.

What lifestyle changes have you made?  I’ve been going since April 2020 and I’m certainly not that far along.  I’d say maybe 50% in my normal life, and about 5% as far as any cardio activity is concerned!

I don’t know if it helped me or not. I’ve got a physical job and it was a case of stopping totally or ploughing on. The latter wasn’t an option so I ended up doing pretty much nothing for months on end which was great for my symptoms but bad for pretty much everything else.

If I’d been able to work flexibly as and when I could it would really have helped I think.

I’m going through the process of ruling things out with the GP at the moment but the fatigue and brain fog are making work really challenging. It’s a desk based job thankfully but it’s mentally challenging at the best of times, and if I take time off most of my tasks just won’t get done, making it even more difficult when I do go back.

For a while I got a sicknote from the GP saying I should only do 4 days a week for my (desk) job. I took Wednesdays off to rest.  It really helped!

 Dr. Campbell holds a PHD in medicine

Nope. PH.D in Nursing.

Glad to hear that most people are making some improvements – my post-viral crapness was mild and short-lived so I’m an amateur by comparison. Fingers crossed for you all to make further strides.

For those who interact with fans of alternative treatments, in “fairness” to Doc666meh from a few weeks ago, ivermectin is used in humans (and sadly, that’s the basis for a good conspiracy theorist to jump on anyone saying it can’t be used in humans). Various tropical wormy things plus also sometimes scabies, even in the UK. It has a bit of a reputation for significant toxicity but that’s muddied by the nastiness of the tropical parasites and what happens to the host when they’re killed.

It’s very toxic to some dog breeds due to genetic deficiency of a membrane transport “pump” and possibly individual variations of some metabolising enzymes too; humans have the “same” processes but we tend not to be quite so inbred and don’t expect such major variations except maybe very rarely (guess what happens to the likelihood of hitting a rarity when loads of people take something).

Ivermectin also is subject to, and has effects on, a variety of enzymes and transporters so in people who’re also taking other drugs, the possibility of a toxic interaction also arises.

I’ve no idea nor intention to learn what doses the charlatans are promotng for COVID these days, but “safe” use of the stuff is possible in some circumstances. Trouble is that some loons just consider it totally harmless – don’t buy it, figuratively or literally. It remains unproven as far as legit medical research into COVID goes.

That sounds crap Aldo, hope you manage to get back to some semblance of normality. Sound advice vs work vs health, have decided to take a week off to start and see how it goes from there.

My top tips for recovery are: radical rest, super healthy diet / vitamins and good sleep hygiene / duration.

The radical rest part was the hardest for me to get my head around as a formally very active / busy person.

radical rest, super healthy diet / vitamins and good sleep hygiene / duration.

I’d agree with this.  But also add, pacing, pacing, pacing!  Know where your limits are and don’t exceed them.

I’m currently around 5 – 6k steps a day.  If I’m expecting to have a busier day, I’ll do fewer steps the day before, to ‘save up’ the energy.  Helps avoid energy crashes.  I hardly ever have to take to bed these days, as a result of being careful and planning.

It does still happens sometimes. Last month I went out for brunch – by 2pm I had done 6000 steps AND spent 2 hours in a noisy busy cafe. Had to go to bed for the afternoon and write off the rest of the day (despite having only got up at 11am!).  But that kind of crash is rare now.

Totally agree about pacing – I’d almost forgotten it’s a thing as I do it automatically now…

To help with pacing and the radical resting I was shown the traffic light system at a CSF/ME clinic I went to 15 years ago.

Green; activity you can do every day and repeatedly without worsening symptoms.

Amber; an activity you can do occasionally without too much worsening of symptoms.

Red; and activity to avoid unless you really have no choice as you can guarantee worsening of symptoms and to a bad level.

The idea being that you try to restrict yourself to green activities, with limited amber activities, and preferably no red activities.

Obviously you need to keep a diary for a while and log activity  (as in everything;  like getting showered, having a shave , making lunch, emptying bins, watching TV, reading a book, checking your bank statement, going to a cafe, not just ‘exercise’) to help figure out what is what and how it affects you, but it is a very useful activity, especially if like me you actually forget what you’ve been up to, and so forget that you did zxy plus abc and efg and  no wonder you’re laid up buggered again.

Also helps if you have a significant other who can pull you up and remind you what you’ve already done, or that you know that activity will floor you, or that you have something coming up so you’d better rest up for it and be prepared to rest up afterwards too.

What lifestyle changes have you made?  I’ve been going since April 2020 and I’m certainly not that far along.  I’d say maybe 50% in my normal life, and about 5% as far as any cardio activity is concerned!

Cut and paste from an email I sent to another sufferer… The things I have found that have helped:

– Balancing my nervous system! I found that my battery ran down very quickly through everyday stress triggering my sympathetic nervous system. I’ve always been quite ‘on it’ and I wasn’t letting my parasympathetic nervous system soothe me back down (because I’d never really needed it!). The NHS course demonstrated how this really affected people with a CFS (Chronic Fatigue Syndrome) and taught me the basics of meditation. I used the HEadspace app and now just try to find 20-30 minutes as many times a week as I can to meditate. It has really helped.

– Avoid stressful situations. For me socialising in big groups was actually stressful, so I tried to meet friends individually.

– Get the best sleep you can. Do everything you can to prioritise sleep.

– Avoid alcohol and certainly excessive alcohol. Even a couple of beers can bugger up a night’s sleep or lead you into running the battery down further than you want.

– If you want to exercise, start very slowly and find your level. The level may well be different on different days, so be prepared for a crash! To be honest I wish I hadn’t tried anything for at least a year after infection. It took me a long while to accept that I wasn’t going to be able to just get over this. Eventually I bought an ebike which was awesome. It meant I could get the feeling of exercise but completely control how much effort I put in. This has helped me build a lot of stamina and resilience to the crashes. Also I started open water swimming. The cold water immersion also helps I think.

– Track your health. A real game changer for me was when I bought a Garmin watch that tracked my heart rate variability and sleep, and gave me a ‘body battery’ score. It helped me read my system better. I don’t rely on it totally but it is helpful to see if you slept badly and are only running on half a tank because it stops me overdoing it.

– Eat well and help your gut biome. Lots of veg, good protein, and fermented foods if possible. I also stated time restricted eating (I only eat for 10 hours and then ‘fast’ for 14). This is to help with my body getting rid of dead and broken cells (autophagy). Lots of interesting info on it at the Zoe website (https://joinzoe.com/learn/<wbr />how-to-fast). In fact I’d really recommend Zoe as a good source of info on health in general.

– Change your recovery mindset. When I realised that recovery was going to take years and not months I felt a weight lift. It made me focus on making incremental improvements rather than big steps.

– The only supplement that I think helped at all was D-Ribose. I’m sure you can do your own research on it but I tried it when I thought the LC may be a mitochondrial issue. I think it helped a bit but I’m not on it now. bought it from this company: https://www.<wbr />torqfitness.co.uk/news/d-<wbr />ribose-itll-knock-your-socks

– Don’t listen to the crazies! A lot of the Facebook groups are full of crazy ideas and people swearing they’ve recovered through odd, expensive, or uncomfortable regimes. I would say 98% are total bollocks. There is one programme that even requires participants to tell everyone they are 100% better even when they are not! I’ve seen this lead to a lot of disappointment. The best resources I have found are The Long Covid for Endurance Athletes FB page (https://www.facebook.com/<wbr />groups/350546636055303/) and Gez Mendinger’s YT channel (https://www.youtube.com/@<wbr />RUNDMC1)

Well, I went to the doctors today and reeled off a list of things wrong with me that have been present, and getting worse, over the last couple of years. Constant tiredness, achy arms and legs, tingly fingers, back pain, chest discomfort, breathlessness and low mood.

I have to admit that I hadn’t really thought of long covid before but the doctor mentioned it as a possibility.  Had bloods and ecg and will await the results.

I’ve now googled long covid symptoms and my list is almost the same.