Long Covid

[Blue Jam]

Thanks for the advice guys. In the end it looks like it was more werk-related burnout than anything, and after a few weeks off I felt much better and returned to werk. Hope things are improving for you all x

[purlieu]

If your doctor was recommending graded exercise that is dreadful - that has been firmly removed from recommendations for ME as it can easily make things worse and given ME shares much in common it seems likely it could easily harm people with long Covid too.

It's 'officially' removed from the NICE guidelines, but my girlfriend recently moved to the north west and was thus referred to the ME clinic in Liverpool, and they offered her graded exercise under another name. Even its removal from the guidelines was hampered by psychology lobbies at the last minute and the wording somewhat watered down. Frankly, the NHS treatment of almost all chronic illnesses is fucking abysmal, which is why I've actually been willing to see a private doctor, and why I was able to effectively ignore what the long covid doctor said. The thought of going in to a long covid clinic without having done a lot of research about what is actually going on is really quite scary, and I feel for the many thousands of people who are having to put up with this shit.

I'm very much avoiding leaping to any conclusions, but after a couple of weeks on LDN I've noticed my general muscle tiredness seems to have abated somewhat, which is quite good given that I'm only on a third of the maximum strength. Combined with the beta blockers I'm now able to spend an afternoon sat at the computer with no ill effects, which would have been utterly unthinkable a few months ago. Symptoms do fluctuate, so I'm remaining cautious, but I have my fingers crossed for further improvements.

I tried reducing my neuroinflammation with minocycline (whilst taking probiotics to try and reduce impact on gut biome) and could be coincidence but i was quite a bit better for a while. But think I caught some bug last few weeks, could have been Covid, and felt a lot worse again. Really terrifying brain symptoms each time it comes back now, it's like enduring months of torture every time.

Have you tried any of the supplements that have anti-viral properties? Obviously there's Tollovid, but it's ludicrously pricey and - from experience - I know that cutting it short can have negative effects, but there's also nattokinase, which is an antiinflammatory, an anticoagulant and has been shown to dissolve the spike protein of covid, meaning it effectively fights any potential viral persistence, plus fights the mechanism and symptoms of LC. It doesn't help everyone - I only had a very minor improvement - but it seems to be the one that I've read the most positive comments about. It's not too pricey so might be worth a look. Especially if you ever think you might have caught covid again - my girlfriend got pretty bad symptoms the first time around, but when she caught it again earlier this year she started taking natto and the symptoms disappeared pretty much overnight. There's also Vedicinals9 which is broad-spectrum anti-viral and anti-inflammatory and seems to be getting fairly good results, although as with all these things it's hit and miss and depends entirely on exactly what is causing the immune issues in your body.

[jamiefairlie]

What do you think the beta blockers are doing to help?

[ZoyzaSorris]

It causes autonomic dysfunction (such as widely swinging blood pressure and heart rate). Beta blockers can help mitigate that in some people.

[purlieu]

What do you think the beta blockers are doing to help?

They steady my heart rate. I was diagnosed with POTS, which basically means when I stand up, or even sit up straight with feet on the ground, my heart rate goes up by about 40bpm and stays there. The beta blockers stop or reduce the effects of that, meaning not only do I not get the general awful feeling of having done a shit load of exercise when all I've done is get up to turn the light on, it also stops my body using up a shitload of unnecessary energy on increased heart rate, which in itself helps majorly with fatigue.

Interestingly, the doctor I'm seeing said she's never seen a single patient with ME or long Covid who didn't have POTS, and she's had quite a few whose symptoms have abated majorly simply with medication to steady their heart rate. I've got to have a 24 hour ECG and if there are no other issues then I'll be trying ivabradine which should hopefully offer more consistent improvement than beta blockers.

[jamiefairlie]

They steady my heart rate. I was diagnosed with POTS, which basically means when I stand up, or even sit up straight with feet on the ground, my heart rate goes up by about 40bpm and stays there. The beta blockers stop or reduce the effects of that, meaning not only do I not get the general awful feeling of having done a shit load of exercise when all I've done is get up to turn the light on, it also stops my body using up a shitload of unnecessary energy on increased heart rate, which in itself helps majorly with fatigue.

Interestingly, the doctor I'm seeing said she's never seen a single patient with ME or long Covid who didn't have POTS, and she's had quite a few whose symptoms have abated majorly simply with medication to steady their heart rate. I've got to have a 24 hour ECG and if there are no other issues then I'll be trying ivabradine which should hopefully offer more consistent improvement than beta blockers.

Interesting, thanks. My wife has that racing heart thing going on too. Might try this.