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

Hi @fedupofbed I was recommended:

Lamberts

www.lambertshealthcare.co.uk/other-nutrients/quercetin/quercetin-500mg/

Or Solagar

solgar.co.uk/products/solgar-quercetin-complex-with-ester-c-plus-vegetable-capsules

I’ve been using it for about 3 months. As ever, not sure if it helps.

@fedupofbed yes I would recommend waiting to talk to the naturopath. The supplements mine recommends are often optimised for better absorption, as it isn't just the supplement you take but the form in which it is delivered and what accompanies it. Your naturopath will also take a history which will inform what would be most suited to you. Glad you've found somebody, I did ask mine but she never responded to that, I think she's a bit overloaded with a lot of patients at the minute.

Trumpsbigtoe so sorry you’ve had such an awful time. All the best for a healthy recovery.

Spoke too soon -- red as a beetroot

@MillStone oh no!! I did look into this as I gather Dr Peers recommends no flush niacin, however from a little reading it seems like that would not be as effective as nicotinic acid, eg

https://www.health.harvard.edu/newsletterarticle/MoreeonniacinnNoflushhnogood

@TiddleTaddleTat thanks for the link. Bit odd isn’t it. The article I posted upstream says:

Nicotinamide, Nicotinic Riboside and Nicotinic Acid Mononucleotide and Nicotinamide Adenine Dinucleotide are all promoted as better NAD cycle supplements but these more expensive forms either enter the NAD+ cycle at the incorrect point for this mechanism, or have their own negative effects on the coupled PARP-1 system. Nicotinamde is well tolerated without flushing but has complex effects on the PARP-1 system and anecdotally does not seem as effective. Slow release no-flush niacin is actually inositol hexaniacinate and only breaks down to nicotinic acid after the first pass liver metabolism, liver burden should be avoided.

It would be good if some reputable health officials would chime in on the MCAS / histamine theory. Everyone seems to have jumped on the band wagon - myself included - but there’s very little in the way of evidence?

TBH the bright red face, neck, arms and body are a bit disconcerting... but It’s so lovely and warm 🙌

@MillStone it's a side effect that would rather be avoided, for sure. I wonder if tapering up helps the body get accustomed to it. I am not going to do well with the flushing as being hot triggers the PoTS, and it's an ongoing cycle...

Sadly I think our experimentation is the extent of the evidence right now. Trial and error is good science, keeping records helps. We are case studies, but due to the hierarchies of western science we are not (in general) being taken seriously by our GPs. Big mistake! I find alternative practitioners much more receptive to this approach.

@MillStone come across this one that is a lower dose, I might try this if I find the 100mg too high.
Btw it suggests eating an apple including skin before taking the pill, worth a shot

https://www.amazon.co.uk/dp/B00BM6QEQA/ref=cmswwrcppapifabt11a8iWFbYGTVPTJ?encoding=UTF8&psc=1&fbclid=IwAR2YlfrvbXqKkpGM0Dbvlv8vQvEPqnD6lrsyiAUXPKo0mDyevbjYEvMUtJY

@TiddleTaddleTat thanks for the link. Probably worth starting very low if feeling hot is an issue. Test the water 👍

100mg of niacin down... let's see what happens. My pills are tablets rather than capsules so can be cut with a pill cutter if needed which is a bonus...

I’ve ordered tumeric and vit D, we can all compare what works. Exhausted last couple of days which won’t shift with bedrest, and after only walking for about 30 mins each day, still have itchy skin and rashes with sinus pain, and eye and head aches. I get breathless if I talk while walking. It’s still feeling to me like an allergic reaction rather than the COVID symptoms but occasional tight throat and earache do seem a bit viruslike. Temp normal. So wierd.

@Fishflakes sorry you're still so exhausted, and also all the other mysterious symptoms. I hope the vit D and turmeric help. I take vit D religiously but didn't bother restocking on turmeric as it didn't make much difference for me - I know it's helped others though.

@MillStone guess it saves on heating bills 😂. @TiddleTaddleTat I hope first dose went well?!

Nothing to report here today, same old stuff.

Cheers FedUp and hope you feel much better soon.

Hello everyone. Barely check out the forum anymore but that’s good news! Just want to come back to report that I am and have been pretty much back to normal since September!
I had COVID in March, then kept having reloaded until September when I eventually saw a cardiologist.
Last positive antibody test was end of august.
Hang in there!
I think for some of us, yes we will have symptoms for longer than average but as in my case it doesn’t mean it’s there to stay permanently.

Relapses not reloaded...

@fedupofbed it was ok thanks, I had a full flush about 10 mins after taking which last 45 mins or so. Just a really hot burning prickly feeling that made me look sunburnt.

@findingschools4myboys thanks for the positive news and congratulations on your recovery! Have you started exercising again?

I have done so and also did so after initial recovery. I did find that if I over exerted myself initially I would get some symptoms again. That stopped though around September.

Hey that's wonderful news @findingschools4myboys so glad! There's hope for us all...

@fedupofbed
Definitely hope!
How have you been feeling lately?

Its so lovely to hear a positive story! Glad your fully recovered I'll be 2 months in mid December and wonder when its all going to go away or worry it won't. I can deal with the joint aches that I have but its the weird ruttle and my breathing that is driving me crackers! I hope the check up with the asthma nurse sheds some light on it and they can sort it out

I haven’t been on the long covid threads for a long time but happened to see this and saw someone wonder what happened to the ones from the start. I was a poster on some of the original threads as I initially had it back in March (although like many only verbally diagnosed by GP later as they weren’t letting us have tests when we had it).
Same long covid symptoms as many, shortness of breath, extreme fatigue, random heart rate zooming up plus excruciating joint pain that was stopping me performing even basic self care. This was about 2 months later. It was only the joint pain that finally got me treatment through my gp when blood tests showed I had developed post viral arthritis and I was put on steroids. 5 days later and most of symptoms were gone and I remembered what life was supposed to be like. I still got relapses of pain, fatigue and coughing that felt the same as before but not as bad. It seemed I got covid symptoms as soon as anyone near me got a cold, but otherwise life was returning to normal and by the end of the summer I was back at old activity levels and getting my fitness back.

Then in September my teenage son became really ill. He had had very mild covid symptoms when I did but recovered straight away. 6 months later he was exhausted, so pale he was a ghost and in a mental fog. Gp ran tests and his iron levels were through the floor. Gp said this could have been due to the virus back in March (so we are putting 2&2 together). He is now back to normal but still taking the iron tablets. I regularly get low iron anyway so also started taking them again and feel better because of it.

My only remaining symptoms are a regular tickly cough, sinus pains and ear ache that comes and goes over a few days but won’t go away completely. I’m sort of wondering if this is still arthritis related as my jaw was quite bad with it. Otherwise I’m back to normal life.

One thing I thought of particular interest was reading so many mentioning the nerve pain and gabapentin. My DH had no Covid symptoms when we did but a few months after was suddenly struck down with agonising back pain having had no injury or accident. He got to the point where he couldn’t move. He has now been on gabapentin for this for a while and he is feeling much better. There is no evidence of any back damage but the hospital believe he must have some temporary nerve damage and that caused the pain. They say it will just heal itself over time.

I hope everyone gets the support they need, this condition gets more research and recognition so everyone can recover, and your lives return to normal.

@CasparBloomberg Gosh your family has had a hard time of it, isn't it strange how it seems to effect everyone so differently and yet there are commonalities...
My iron was very low too, came up with supplements then dropped again. I think that the ranges on blood tests are not adequate as a marker - initially i had ferritin of 15 (right at the bottom of the range) and this wasn't noticed by GP so just kept going down and down.
Covid seems to ravage all of our nutrient stores and continues to do so for months afterwards.
What sort of approach have you taken to managing your symptoms ?

I have seen some early signs that the antihistamines on top of the low histamine diet are having an effect. My tinnitus is much reduced - probably has more silence than tinnitus over the past couple of days.
Palpitations have been absent.
I've had one day on 2 x 100mg niacin and going to do the same today before tapering up after that. The second pill still caused me to flush but much less than the first. May have helped that I'd just eaten a meal. As it also makes me dizzy (combination with PoTS I think) I need to lie down after taking. Not sure how this is going to work around working from home once I return tomorrow. And looking like I'm sunburnt in video calls!! Haha.

What I find strange is as time goes on symptoms we don’t relate to Covid seem to be related. DS lost sense of taste and smell with his symptoms before they listed that as a symptom. DD got a painful rash across bottom of legs and feet as one of her symptoms before that was listed. Now I just wait for other things to come out and think, oh yeah so that was it too 🤔

Apart from the initial steroids and the iron I haven’t been doing anything medical except trying to regain my fitness through exercise. I did take a knock on getting a raised heart rate and breathlessness relapse after the kids returned to school bringing bugs home, but I recovered naturally in a few weeks. I have felt like since then the remaining symptoms were minor and haven’t even seen gp about them. I am interested in the antihistamine approach to see if that does anything for my ears and sinuses.

With the iron I always find I have to take supplements for a lot longer than gpprescribed for. At least 6 months. Iron stores can take 6 months to deplete and to refill them takes longer than just restoring free iron levels that will go down quickly once supplements stopped. There’s lots online about it taking up to 2 years to restore stores.

For anyone who hasn’t had the steroids to help with breathing, joint pain palpitations and fatigue, I’d say this is definitely what had the most significant impact for me.

Good luck with the return to work x

One other comment was that I noticed someone saying we are the case studies and to keep notes.
I kept a meticulous daily diary of symptoms and anything related like activity. This is what I sent to my gp to get an appointment at a time when they weren’t doing them and being so clear about the issues got me the blood test to get the diagnosis that got me the steroids.

I wish there was somewhere all these records that people are writing could be collated, there’s a wealth of info in them that someone could use to find these patterns. I suppose that’s what the symptom tracker app is for now.