Covid lungs thread 18 weeks plus - thread 2

[LetsBeSensible]

A thread for those with “long covid” experiencing symptoms for around six months now.

Some resources
UK sepsis trust vids m.youtube.com/playlist?list=PL16uJ-CyqxJIJpdLhf-Ccjhdvf4uNBIie
Physio for breathing pattern disorders www.physiotherapyforbpd.org.uk/
Dysautomnia webinar video vimeo.com/442593497?utm_campaign=5370367&utm_source=affiliate&utm_channel=affiliate&cjevent=38c74aa9fd7b11ea82d1002e0a180512
Articles, links, Resources c19recoveryawareness.com
Ricovr project videos

Video 1 - An introduction to the CRESTA team and fatigue
Video 2 - Managing your energy and daily activity
Video 3 - Looking after yourself during your recovery
Video 4: - Activity and fatigue
Video 5: - Question & Answer session on common issues for Covid-19 recovery

Thanks AndsLee. I will have a look into it. It all sounds highly plausible. Also that the issues with the body have changed over time makes sense. Some of the symptoms at the moment like skin problems and brain fog does feel like an allergic reaction.

It is confusing because in the grim first 12 weeks I was trying to get some probiotic type of effect by making and eating some fermented stuff. Which I felt definitely helped me feel clearer headed tho not a total fix obviously. Then tried including the same, on twice in last fortnight and it definitely made me feel worse by same day- headaches, pricking nerves, rash beginning to itch.
I did that as a bit of a test after having read the discussion on here about histamines and reading that fermented stuff is high histamine. Sad if I’ll have to step away from the Kimchi as my taste buds have never really recovered, so strongly flavoured food is nicer to eat.

I had only mild and very infrequent heartburn in first three months though so I didn’t take any medication for that. Any tips on low-histamine but gut-friendly sources?

@Fishflakes I've been off histamine for a week and saw significant improvements . However I've reintroduced some foods over the last couple of days to test the difference. I've seen an increase in palpitations, especially those during the night, and tinnitus is worsened. I've developed a hot, burning rash on my face and chest. I'm also in the few days preceding my period which is always a bad time. However I'm increasingly convinced that MCAS and resulting histamine intolerance is a significant part of this.

Hi everyone. I'm just coming out of my worst relapse so far, after I picked up a cold. I'm back out of bed now, back to pre-relapse fatigue levels and was able to work for a couple of hours yesterday. Still have the SOB, which I find mentally really hard as well as physically. But on the whole feeling positive that I've come through this setback.

Thank you to @AndsLee and @TiddleTaddleTat for all the fascinating info on histamine levels. I did look into this a bit over the summer and took cetirizine for a week or so but stopped when it didn't have any effect. Maybe I should try again for a bit longer. I looked into the low histamine diet too but didn't think I could manage the practicalities of it! Interestingly, my hayfever, which is normally very intense, was non existent this year... not sure what that means as I know it's the complete opposite for others.

Much earlier on, I also looked into getting another type of GERD medicine that works in a different way from omeprazole - it's called famotidine and is an H2 blocker which would lower histamine levels. Lots of people in the States have been taking it alongside standard antihistamines (it's commonly known as Pepcid). And interestingly some early research showed that people who were taking it before they contacted Covid may get it less severely. However, this very inexpensive medicine was actually impossible to get hold of in the UK. This was because there was a health scare with the most popular brand, Ranitidine, and nothing else has been available to fill the gap. This was all a few months ago, so not sure if there's been any change recently.

In other news, I've just started this breathing practice programme:

stasisperformance.com/covid19

It's free, and the organisation has close links with Mount Sinai Hospital in New York, which is doing a lot of work with Long Covid people. It's shown to have been of particular help for balancing the autonomic system, and symptoms related to that, such as the orthostatic intolerance, sleep disturbances, 'fight or flight' feelings etc. I'll give it a try. I've not done anything as formalised as this before but changing my breathing practices (nasal breathing, being conscious of how I breathe, etc) has been one of the few things which I think has helped my symptoms. For anyone interested Rangan Chatterjee's podcasts with Patrick McKeown and James Nestor are absolutely fascinating.

Phew, written an essay this morning. Sorry this so long!

@fedupofbed
I tried Cetrizine and it didn't work either. I think what is key is the mast cell stabilizer properties - clarityn and fexofenidine.

I was taking ranitidine early on, and found it much better than omeprazole. That was in the early days. I was also aware of the discussion happening around how the H2 blockers seemed to be more beneficial to those with Covid than Omeprazole. My doctor recently asked if I wanted another prescription of ranitidine, so I would be taking H1 and H2 blockers, but I refused. I really do think what is key here is the mast cell stablizing element of the drug - hence why Vitamin D is so beneficial (a natural mast cell stablizer).

I want to get my gut back to working properly, and so to decrease stomach acid to me seems illogical. I am currently my second day into taking DAO supplements, I am taking Clarityn and some multivits with iron, turmeric, a probiotic (but I have decided that once these are done I won't replace them) and fish oil with omega 3. I am also taking apple cider vinegar, and trying to eat a low histamine diet. I haven't had heartburn in an age! Who knew you can get GERD from LOW stomach acid, which is where I thought the Omeprazole would help. And it did - it relieved the symptoms - which is common for low stomach acid - but it has hindered in other ways.

Interestingly, for those that had thrush - this is also common with low stomach acid...

Thank you @AndsLee this is all absolutely fascinating. I'll try one of those antihistamines, and also dig out the apple cider vinegar. I'm already taking D, omega 3 and probiotics, amongst others.

On a different note, I've been taking an anti viral, Aciclovir, for about a month now to noticeable effect.

Oh really...? That's interesting...

The immunologist/ ME CFS specialist thought it was worth a try for 3 months, but I don't think it's doing anything- certainly didn't help my cold!

Oh sorry really bad brain fog typo!!! I meant NO noticeable effect 😳

@AndsLee I have loratidine, is that the generic form of clarityn?

@AndsLee sorry . A quick google confirms that yes they are the same thing. Going to start on that once I've got my tilt table out of the way.

Please don't hold me accountable if it doesn't work! I am noticing a difference. I am not "cured"! But definitely a difference... xxxx

On the other side of things, if it does work for you, gifts can be sent to... hahahahaha ;) xxx

@AndsLee from what I've read about MCAS, antihistamines only block and won't solve the problem, although for some they are used long term. I think they would form part of a plan which includes other things like addressing hormones, reducing stress, and lower histamine diet. Plus if it is MCAS that is happening post covid, we don't know if that is going to be a temporary or long term issue.

My personal experience is that the post viral side (fatigue and POtS like symptoms) are resolving gradually with rest, pacing etc but those that appear to be histamine related are stubbornly persistent.

@TiddleTaddleTat That's what I think. My long term plan is to see if the antihistamines continue to work for a month or two, then if they do, accept that as proof that this is what at least a fair whack of the problem is. I'll then come off them (hopefully) and address this with diet.

Tiddletaddle can you say any more about the addressing hormones side of it?
There’s definitely been some shifts for me, I had no periods pre COVID (Mirena) I now have light periods occasionally etc.

I am missing my period this month. That is odd, the only one I missed after Covid was in April...

@Fishflakes there was a video I linked to earlier in the thread with some info... I'll see if I can find it

@Fishflakes this is the one

go.mumsnet.com/?xs=1&id=470X1554755&url=m.youtube.com/watch?feature=youtu.be&v=6uYWkLOVar8&fbclid=IwAR3OLAEWgPP5WavNbwag0qPEDoaVxZUc1vbADkMy1HUz1zsf5p_AkkzFDqQ

@MillStone I had the tilt table test today, bleurgh I can't say I enjoyed the experience. They said I would hear within a few weeks... but I've been disheartened to hear how long you've been waiting. I feel knackered too this evening, really fatigued and my legs are killing me.

@TiddleTaddleTat well done! It’s a surprisingly uncomfortable and unusual experience isn’t it. I hope it hasn’t set you back at all.

You may get your results much sooner. My test came about under a strange set of circumstances... plus I went to the NG for that test and apparently the Dr who actioned it doesn’t work much.

I don’t think my experience is indicative of the norm because I had most of my tests done at Diagnostic Cardiology, Hallamshire, and the results were much quicker!

@MillStone no it was the northern general for me too. I've been going between the hospitals for various things. Did you get a call with the blackout service specialist nurse? I think it's part of the work up alongside the tilt table. She said she would be calling back in 4 weeks anyway so I should be getting results by then I hope. She advised the pots basics anyway so I'll get started on those now regardless.
How are you feeling ?

Keep coming over a bit dizzy, but then I finally got flu jab yesterday so maybe I should be doing very little.

@TiddleTaddleTat

Ohh, what are the PoTS basics? Is that the advice on fluids and salt etc?

Thanks yeah, overall I've seen big improvements recently. I noticed a big improvement between moths 6-7 but an even bigger change in thr past couple of weeks. I'm now able to do lot more physical activity without too many issues. No where near pre March ... but considerable improvements.

It's the PoTS symptoms that I'm still struggling with. I hope they are not separate to the PVF. Now the picture feels a little less muddy, I worry that these are 2 comorbid issues..

How is everyone getting on?

@MillStone great to hear that you are able to do more. It really sounds like you are emerging from the other side!!
Basics for any orthostatic intolerance I think - lots of water, increased salt (though only if no high blood pressure), no alcohol, waist high compression, exercise (supine if necessary).

@TiddleTaddleTat

Thanks for the list of tips. I'm doing most of them -- especially lots of liquid which helps so much.

There seems to be a conflicting balance between getting enough rest for the PVFS but doing enough physical activity to help improve the PoTS symptoms.

How are you getting on?

@MillStone yes, balance is tricky as ever. I managed to walk to the end of the road and back the other day (sit down in the middle) with no PEM so that's a big achievement for me. I've got some floor based exercises from the physio to do every 3 days but they are super gentle as she wanted to wait for heart investigations first. Hoping to increase supine exercise, especially leg strength, as soon as I can. Feeling very fatigued today though, hoping it will pass soon.