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

Think I have a relapse coming on, prompted by an ear infection that I woke with this morning. Praying it passes soon...

Welcome Amy sorry to hear you’re also having a hard time with this.
I have headaches most days what, and tiredness. Only thing that reduces the ache for me is drinking loads of water but it won’t shift properly. Also rashes and nerve pricking in extremities. Tinnitus. My memory and thinking speed feel weaker.I think my immune system is all over the place, feels like I’m having a mild allergy reaction most of the time.

Good luck everyone still struggling

Hi everyone. Sending good wishes as ever to those who are relapsing. I wouldn't say I'm relapsing any more but I've seen no progress over the last 6 weeks- my symptoms just keep cycling back and forth.

@TiddleTaddleTat that was a very credible video you posted and it's finally convinced me to try a low histamine protocol for the next few weeks. I've had my head in the sand about this for ages, as the diet looks so bloody challenging and I have to change EVERYTHING I eat. But I'm going to give it a try! I hope your relapse didn't come?

@Fishflakes and @Whatnext2018 sorry you're still with us, and @amyj606 sorry you've had such a tough time too. What a bugger of a virus.

I have not seen masses of progress in the last 6 weeks either, @fedupofbed
I had a bump when I started lots of new supplements and started treating the PoTS with compression and more salt in my diet
But overall I am still unable to increase my physical activity (even floor based physio exercises) without significant increase in fatigue
The question I have regarding the MCAS hypothesis is that wouldn't we see the same variety of symptoms if it was in fact an appropriate immune response taking place?? As in, we do still have virus in our gut. I don't see anyone on the FB group declaring significant recovery after taking these steps to manage supposed MCAS. Personally I see a minor benefit from the low histamine diet (did it over 3 weeks and am still mostly compliant and avoid the highest histamine foods) overall there has been an impact but it's been less than hoped. Anyone had more luck than me?

Hello all

Just doing a check in... Seems like the usual differing tales of improvement and relapse. Thinking of you all though...

So, symptom check:

• Still have the "breathing though dust" thing first thing in the morning, but have learned to "breath through it". Interestingly, the last few days the sensation has morphed into heartburn, which goes along with my original theory - gastric related. I think there is more weight to this now as I had a troponin blood test done a couple of days ago. Clear, and my BP is fine, apparently, according to my GP. He said he is "as certain as a medic can be that this is not cardiac related". I am inclined to believe this, my "gut" feeling has been that these weird sensations are being driven by a disruption to the digestive system.

The burning skin has more or less subsided, and when it does flair it's mild and only in my wrists. I sometimes get the odd bout of the "prickly crawly" feeling, but it is usually fleeting. I am left with some random spider veins on my knee, and I think I have finally found out the source of the reoccuring bruise - it's the handle of the bath! hahahahaha

My period this month has been all over the place, and I have had a couple of bouts of...well...running to the loo. I get the feeling this is all part and parcel of my body resetting.

On the whole, when I look back to September, I definitely feel better, even having a couple of days where I have felt quite normal. My main issue now is the raging heartburn, but in truth, I have ALWAYS had heartburn, so maybe I am actually just getting back to normal?

@AndsLee

Hi, how far along are you? I had such bad heartburn for a couple of weeks a few weeks ago.

@TiddleTaddleTat I feel similar the last month and a half too also, I’ve almost gone worse in some ways. Approaching ovulation and feeling the nausea/stomach feelings and just so very tired, which I don’t tend to get a lot normally.
Does anyone find in a bizarre way, the less they do, the more tired? It’s been pouring down here so have been stuck in for a few days with toddler Dd, no walks etc and I can barely move off the sofa, feeling like I need to nap in the middle of the day too, which I haven’t really had.

I was looking back at threads for very early on-April time and wondering what happened to all the old posters, assumed they recovered? So it’s only a matter of time then hopefully, wonder why for some of us it takes longer...

@TiddleTaddleTat I think the antihistamines play a part, but I think there is definitely more to this jigsaw for sure. I feel better for taking the clarityn. I am now starting on some famotidine alongside the antihistamine as a double pronged attack which will hopefully remedy the heartburn too. Those that live with MCAS seem to have to take both H1 and H2 antihistamines. I feel it when I have not taken my Vitamin D (mast cell stabiliser). I think the thing about allergic symptoms is that people do react so differently.

@Nomoreboobs - Got sick on 20th March...:)

@AndsLee good to hear you are seeing some symptoms subside . Are you on a low histamine diet too?
I'm guessing your GP prescribed the famotidine. Since my symptoms are not so explicitly 'allergy' I don't know how successful I'd be if I attempted to raise this with my GP. Worth a try though.

Sorry name changed for a breastfeeding thread, try to keep separate on here, it’s Whatsnext2018

@TiddleTaddleTat I have noticed that there are some foods that make me more uncomfortable than others... For example, bread is a no-no, but pasta is fine so it can't be gluten that is the issue. I think it's more likely yeast. I am maybe making more choices of foods that are lower in histamines, but I have to say I am not on a strict low histamine diet.

@AndsLee yeast is high in histamine as a fermented food, so that's interesting

nkalex.medium.com/the-team-of-front-line-doctors-and-biohackers-who-seem-to-have-solved-long-covid-5f9852f1101d

Good time to be in supplements ?

Thanks for the kind words! The middle of my back feels sore today and the weird ruttle / bubbling is a little worse today. I just hope that the asthma nurse can shed a light on what's happening. I think its the not knowing and not seeing an end in sight

@MillStone thanks for that. I did see something on this before but wasn't in the right receptive headspace. This makes a lot of sense to me. I've seen an improvement since I increase vit D (5000iu daily), and I take the other supplements. The only thing I haven't been taking is the niacin as nicotinic acid. I've asked my naturopath but she isn't all that responsive so I may just go ahead and order some. It's not even expensive to buy.

@TiddleTaddleTat haha me too, I ordered some earlier.

I think it has to be Niacin as nicotinic acid. 100mg 3 times a day.

Worth a try isn’t it?

@MillStone brill, I got some for £5 for 100mg tabs (solgar) it isn't the highest quality supplement but worth a shot ! Interesting it needs to be nicotinic acid which causes flushing, so the pricier niacin supplements use niaciamide (including the extortionate ones I've been taking... )
The article says you need to taper up to that dose, as it may cause flushing.
I think it would probably be helpful to address the MCAS symptoms alongside this, as according to this theory it sounds like that is part of it but not the whole picture. I'm now taking loratidine twice a day. Plus the low histamine eating.
Let's see... we'll either improve or cause ourselves damage with all this self supplementing !! What choice do we have!!
If of interest it is also possible to get niacin as nicotinic acid from the foods in the attached pic, which might be worth adding in too

Oops not that pic!

@TiddleTaddleTat Thanks for the info and food list. I went with Solgar, too. I take their quercetin and L-Theanine.

The reason I'm biting is because I'm a veggie and I over exercise. Both result in low NAD+. For years I've taken a daily B complex which includes a low dose of Niacin ... and my B12 bloods came back fine ... so who knows! As you said, this is likely to be a part of the puzzle.

@MillStone see, I don't have those risk factors. Not a veggie although I used to only eat meat once a week or so. And took no supplements. I should have imagine chronic work stress might have something to do with my susceptibility

@MillStone Thanks for that, I’m going to get some this weekend, hoping they’re available in normal pharmacies/chemists? If anyone has any can they please post a pic of them?
I take all the other supplements plus iron and B vitamins and tumeric. Do you all take the selenium and quercetin?

@Nomoreboobs yes I take those too. Selenium is in my multivit. Quercetin is a vegetable extract and natural antioxidant and antihistamine. My herbalist put me on it months ago. No idea if it helps.

Niacin might be available but it’s normally lumped in with a B complex or with energy products like a Berocca. Holland and Barrett will stock niacin as nicotinic acid.

Thank you @MillStone , I've had a quick look and will read it properly tomorrow... suspect I'll be ordering niacin and quercetin very soon! Weirdly when I had a blood test back in May/June my selenium levels were too high. So I'll stick to a few Brazil nuts every day for that.

I had my appointment with the ME physio today. She was really helpful. I'm back to practically complete physical rest for now, and trying to keep my heart rate below 90ish, to try and get back the stability I had before my cold last month. She also got me thinking about sleep yet again as it's so vital for recovery and I never get enough. She suggested amitriptyline, which I already have but have never actually taken. I've always been a bit scared to... anyone else have any experience of this? I know a few posters used it right back in the early days. I just feel like it's a strong drug and it has side effects relating to the heart (though the cardiologist said it was okay for me to take).

I had my first day of trying to eat low histamine... it wasn't particularly healthy as everything I have in the cupboard/fridge is now off limits. Plain rice cakes for lunch, yum!