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

And thank you also for the niacin food list @TiddleTaddleTat . I think chicken and rice will be featuring heavily in my diet over the next few weeks...

What are all your thoughts on the vaccine..?

Would we get it if still suffering from long covid, would it help us improve or possibly make it worse? 🤷🏻‍♀️I feel wary

@Nomoreboobs I feel a bit uncertain about that...
@fedupofbed I have found it's important to eat a lot of fat and a lot of meat! I am also eating fish regularly (cooked from frozen for lower histamine). Not getting enough protein is going to make us feel so much worse.
I think it's also really hard without gluten sources. I've also developed an issue with corn (could already not handle oats, even GF) so my diet is shrinking.
Not eating enough makes the fatigue so much worse so definitely something that needs careful thought.

@fedupofbed your physio appointment sounds like it was very useful and positive. Not sleeping is the worst isn't it. I'm struggling with the 2nd half of the night. As well as all of the typical sleep hygiene advice... I've found CBD oil, magnesium and L-Thiamine do help calm me down and result in a slightly better sleep.

Also just a note on Niacin and dosage. I've read that too much is bad for you and causes nasty side effects, there are drug interactions and health condition considerations. The advice on the facebook groups is 100mg 3 times a day. That seems high. I might start lower.

@MillStone yes I looked up side effects too. From what I can gather it's at doses of 3-5g that people report some quite dangerous side effects - issues with the retina ...
I agree it's best to keep it low to start with and not go up too high.
Looking at the foods rich in niacin, it would probably be doable to get 100mg a day through diet alone (if you eat meat). I think it's always preferable to get nutrients through diet where possible, and niacin sounds like something that people are not usually deficient in.
Interested to see what comes out of this experiment...

@fedupofbed glad the physio was useful. I think it probably is the same person we're seeing! She provided me some supine core and leg exercises but unfortunately they increased overall fatigue and induced symptoms when done every day. I'm pretty much back to baseline after a couple of rough days. Will try again over the weekend I think.
I wonder if the MCAS- related exercise intolerance is behind this.

If it's any use I've cross referenced high niacin foods with high histamine(I've crossed these out). You can see it makes it quite difficult to get this through diet without increasing histamine and if this theory is right, explains why so few people are making significant recoveries.

@TiddleTaddleTat thanks for the list. Looks like it’s pumpkin seeds 😂

My Niacin just arrived. It’s 500mg so I’m going to start with 125mg twice a day.

Thanks this is all really helpful everyone. I feel like at least there’s some more things to try which is lifting my spirits.

I'm just joining in this thread for the first time.

So my symptoms are weird because I had Covid back in late March. The loss of smell and taste returned after a fortnight or so and the cough lingered on until about June/July. I had a very severe period of acute depression (where I tried to kill myself) from April to June. The shortness of breath post-Covid never really went away.

Then over the summer hols I was reasonably okay... apart from the lung capacity thing and the weird pulsating nerve "whoosh" that would spread over the back of my neck and ears whenever I lay down. But I could live with it... and tbh didn't really think I had long-Covid.

Then I went back to work. That was the thing that really did me in. My shortness of breath is horrible, and to compensate my diaphragm goes into spasm every 15 mins or so. Cough returned and is lingering again. And my chest is in almost constant pain, with regular stabbing feelings. My blood oxygen level sometimes drops to 94, esp if I exert myself but it's not low enough to be a problem (and I should probably stop checking). Oh and the tinnitus. The fecking tinnitus!

If I walk on flat ground I get massive bpm raises but I don't feel particularly out of breath. Yesterday I was gently strolling with a friend and it was consistently over 150 for about an hour. But if I exercise properly its actually lower. I can't explain that because if I exercise, I pant like a normal person, but if I walk gently and feel fine, I get the bmp rise.

Just miserable.

Someone asked for niacin supplement pics, this is the one I've ordered. Can't vouch for it yet though!

Hi @Trumpsbigtoe what an awful time you've had of it. You are definitely not alone with all the odd symptoms- I can particularly identify with the high heart rate and the horrible SOB feeling. I've found that breathing exercises (I'm currently doing the Stasis programme) and nasal breathing have certainly helped me manage this a bit better ( though hasn't stopped it). I get the oxygen level drops too and I've just stopped checking now as causing me too much anxiety. I hope that you got lots of support for your acute depression and that you are now in a better place? It's so hard with all the ongoing symptoms though. Sending love and strength.

I've had a day of more fatigue than usual, light headedness and headache. Also heart rate has now gone back low again (sub 60 when resting). My period arrived and it was also the first day of HRT (though don't quite understand as GP has given me an oestrogen patch plus the mini pill), but I've now taken the patch off in case it was causing the light headedness. I'm just so darned confused with all my supplements and meds, and diet changes! I had lettuce, carrot, pumpkin seeds, flax seeds and rice cakes for lunch. No dressing, and feeling hungry!

@TiddleTaddleTat and @MillStone I'm about to order the niacin and Quercetin but the niacin does look a bit alarming, especially the flushing. I'm assuming neither of you have started taking it yet... let us know how it goes.

@fedupofbed sorry you’re feeling it today. Hope the weekend brings an improvement.

I started the niacin earlier. 300mg over 2 sittings. Will work up to 500mg p/day and see if there are any changes — other than being really ill and now bright red too 😂

Incidentally my Dr phoned earlier and I took the opportunity to ask if it was cool to take it. Yeah sure fine go ahead... and the dose they suggested was way more than above.

@MillStone ah thanks for reporting back about the niacin being OK with the GP, that is really reassuring.

@fedupofbed nooo that's no lunch!! You need protein!! Are you veggie?
I'm terrible if I don't eat enough (have always been) me and low blood sugar = seriously hangry

@fedupofbed examples of some low histamine meals I've had...
Frozen fish (eg cod) cooked in onion, garlic, ginger, coconut milk (biona is good, no additives), with brocolli and cauliflower

Roasted sweet potato, butternut squash, cauliflower, served with olive oil or coconut oil and brown rice

Snacks
Hard boiled egg with some ghee, rocket or watercress
Rice cake with almond butter (meridian), half an apple, and some pistachios

Etc

Ah thank you @MillStone . Great minds as I checked with my GP too, who also said the same (I saw he emailed after my last post). Did it really make you go bright red?? And did it make you feel all hot?

Wow @TiddleTaddleTat they sound really tasty and nutritious. I'm just not quite on the ball yet as I started so suddenly. Fortunately I can tolerate gf oats so I think porridge will become a staple. I'm only going to be strict for a few weeks I think... I'm not going to keep at it if I don't see any improvement. I was eating so many avocados, olives, walnuts etc before thinking I was so healthy...

Sorry @TiddleTaddleTat I keep missing posts. No I'm not veggie though when I was well I cooked/ate a lot more vegetarian. DH now cooks evening meal which usually features meat, potatoes and veg - reassuringly full of protein and low histamine! Just got to get my lunches in order now no cheese and nuts.

@fedupofbed I think you can have some nuts ? I'm eating almonds Brazils pistachios and macadamias . Probably shouldn't have too many but need to get variety in the diet otherwise it's completely unsustainable.
Naturopath did tell me that it is impossible to avoid histamine, it's in all foods to lesser or greater degrees.
How it is prepared is also very important - meat needs to be cooked as fresh as possible and fish from frozen. No leftovers.

Yeah I think you're right @TiddleTaddleTat . I wasn't entirely sure about almonds though. I've been using this list as a reference point. But then on other sites it says slightly different things.

https://www.mastzellaktivierung.info/downloads/foodlist/21FoodListtENalphabeticcwithCateg.pdf

@fedupofbed haha no I was joking. I think you need to take a bit for that to happen. Maybe some people are more sensitive to it happening.

@fedupofbed yes that's a good list. I'm eating the 0 and 1 foods but trying to avoid 2 and 3 completely.

I'm a bit gutted about cumin... no curry ☹️. Ah @MillStone that's good to know. I saw a photo somewhere else of someone looking very flushed! Did your herbalist recommend a particular brand of Quercetin? Nothing is standing out for me and there are lots with other things in it like bromelain or nettle which I'd rather avoid (too many things, aargh).

@fedupofbed this is the Vit C and quercetin supplement my naturopath has me on , it does contain additional stuff and I've just noticed that they are citrus bioflavonoids but she suggested it following a discussion on MCAS so..

Thank you @TiddleTaddleTat ... I'm just not sure about the bromelain as I read that it can cause allergic reactions if you already have allergies. I'm probably overthinking it though. I do a lot of overthinking these days!

I have actually booked to speak with a naturopath now, again someone who has an interest in ME CFS. My appointment is next Tuesday so I guess it would be more sensible to wait till then. I've got a bit carried away over the last few weeks... physio, naturopath and fatigue coach!

I hope everyone gets a good night's sleep.