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

[quote givemeanother]@amyj606 advice is to take it really easy. If you're getting aches, I'd scale back what you're doing. The earlier you do that, the quicker you'll likely recover. Learn from us who didn't know that earlier this year!!

I'm currently having a big niacin flush. I'd previously only flushed once on the first day of taking it, but today had very little breakfast which I expect is why - meant to be chairing a meeting in half an hour and hoping it passes!!![/quote]
Thank you! Its the the not knowing I think...I've been off work since mid October and I don't know when I'm going to be well enough to go back...I'm OK if I'm not doing loads but I work in a school (via a agency) and I dont think I could keep up with the kids! I've got to check in with the asthma nurse again as I've still got a weird ruttle and I'm getting back and chest tightness so my inhaler might need changing again...she did say when I went for my appointment that its a marathon not a sprint. Im trying to be as positive as I can and remember I can now do little bits of waking and exercise and I dont have to sit down to get down the stairs because I was too weak to walk! Thank you for the pep talk

Hi yes @amyj606 I would completely agree - don't rush, lots of rest and listen to your body. I'm glad you're managing to do more now though.

@givemeanother I hope your flush passed in time! Mine are quite unpredictable too - sometimes nothing and sometimes really intense. I find eating an apple beforehand really helpful.

Still trudging along here. My acupuncturist/TCM practitioner has stepped up and consulting all her colleagues (she's part of a Covid special interest group). I've also lined up some appointments with an osteopath who does the Perrin Technique in the New Year. Got to keep just trying to get better...

@fedupofbed ooh, keep me posted on the acupuncture. I went for a session yesterday with someone I'd seen 4yrs ago for fertility. 4yrs ago I thought she was great, yesterday was mixed.

She seemed very confident about treating me and wanted to focus on the stomach mainly...BUT she didn't want to wear a mask...I had to persuade her to do so - she was of the view that because of her understanding of Chinese medicine she understood the virus and it wouldn't come anywhere near her. She suggested I take my mask off too...I'm not going to go back to her till local case numbers have dropped!

Oh @givemeanother that's not great. As well as the obvious concerns about safety, I think it makes it harder if your beliefs aren't aligned.

I've been having acupuncture and TCM for months. I stuck with it because my practitioner is really supportive and lovely (and mask-wearing!), and I guess I was gradually improving for a while. And I think the work she's done in the past on my lungs seemed to help. But in all honesty I'm not sure how effective it's been overall. She's so dedicated though and I'm having one more session before Christmas, possibly with a new treatment approach.

How is everyone doing on the supplement 'regime'
Any news on the impact of niacin and the others @MillStone @fedupofbed ?

I'm still seeing positive effects, had a few tricky days (mainly caused by stress and having a period) which exacerbated PoTS symptoms but generally good.

Am able to be more active and go for the odd short walk and drive!

Spoke to naturopath and have some more guidance on histamine diet (and how to reintroduce foods) if that's of interest let me know

Hello all...

So, as you know I had a wee blip about a week and a half ago. Since then, I actually feel like I am "healing". I feel like there has been another step forward. The "breathing through dust" sensation is still there, but it feels dampened by the antihistamines.

This is gonna sound weird. I feel with every round of symptoms, the body gets shot of more of whatever is bothering it. Now, it seems like it is actually being pushed out my nose (horrible very thick sticky mucas). I also feel, each time I think I am having an allergic reaction, my body gets it under control quicker (and my nose fills up with gunk).

I have no idea if this is just time, or that the supplements I am on are actually working, or a bit of both. But I feel something has "moved" again... I feel, once again, that I am healing. That I have made some ground again. Some days I feel normal. And, I mean normal.

Regime hasn't changed...
Morning - An antihistamine every 2 days (unless I feel "allergyish when I wake up, then I take one) - multivitamin and minerals - probiotic - HCL supplement (this has helped for sure) - Vitamin D - an aspirin - Omega 3 fish oil - now having turmeric tea rather than a supplement

During the day - DAO supplement 20 mins before I eat a big meal so I usually take two in total. QUESTION: How many folks are taking these now and find they help? I really do think they have been a game changer. For me, adding the HCL supplement along with this has been good too.

Evening - Famotidine (this has helped loads too - addressing gastro symptoms (of which the HCL helps with my stomach acid not falling too low in level) and also providing antihistamine.

Definitely feeling a decrease in symptom potency. Hoping they will eventually subside.

I find it is REALLY important to drink loads of water. Water helps the allergy feeling subside quicker too...

Hi @AndsLee sounds like a good treatment! I'm using the DAO here and there but am still eating low histamine so only intend to use it when I want to eat something that would cause W rise in histamine levels.

Just seen Gez Medinger has a new video out. Really good!

m.youtube.com/watch?v=C3w7skYHcSg&list=UUln_SCEd4JiGkHIUZd1VlXw

Hi @TiddleTaddleTat and @AndsLee that all sounds very positive - so excited for you both!

No improvement here - yet 🤞🏻. I've been lower histamine for about a week but haven't been able to be as strict as I'd like. My DAO supplement has just arrived so I'll be taking one a day before my evening meal (this is when I struggle as relying on my poor over worked DH!). I reached 300mg of niacin yesterday and will stick at that level. As of today I've switched over to almond milk, so now low dairy. I'm just waiting for my NAC to arrive.

My problem as I've already said is that my symptoms are so bloody consistent. I find it really difficult to notice what works and what doesn't and there's so many variables - physical activity, cognitive activity, diet, etc. I feel a bit better today but I honestly think it's because I'm not checking my heart rate and therefore not focusing so much on my illness.

I've managed to get an appointment with Dr Peers! It's in February in her menopause clinic rather than as Long Covid.

@fedupofbed NO WAY! An appointment with the master herself... haha ;)

@TiddleTaddleTat great to hear you're getting out for walks and drives. Sounds like you think the niacin's working well?

I'm feeling pretty positive but I'm not sure if it's time or supplements or LH diet, or all or...?

For the past week I feel like I've been living within my baseline and as long as I stay there the symptoms aren't too terrible. I'm doing a short daily walk, some light arm weights and a bit of yoga.

My heart's still beating very hard (hard not fast) at random times during the day and night... but even that seems to have chilled out a bit.

I think the biggest hinderance on my recovery is anxiety, stress, low mood and my inability to rest. I was pushing waaay too hard up until my last relapse a month ago. I was doing more activity but I was so fatigued and full of symptoms. I've now dialled it back to the above and I'm resting more too -- something I should have done ages ago.

Incidentally my calfs and back muscles are still hurting from that relapse. It took from March to September for that pain to finally go!!

@fedupofbed Good news on your appointment. I hope you bought NAC in pill form! I bought powder which I've been drinking in water twice a day... It's so horrid.

@MillStone that sounds really positive . I know your level activity has been higher than mine for some time, but the yoga, weights and walks sound amazing.

Yes I'm feeling positive about the nicotinic acid. Really interesting to hear the author of the paper speak in Gez Medinger's latest video. I wonder if this theory is helpful for ME/CFS or if it is limited to covid. It would be amazing if it turns out to benefit other post viral syndromes too...

@TiddleTaddleTat yes hopefully this chance that researchers have to study the progression of illness will unlock some secrets that will benefit everyone. It’s reassuring to know there are people working on this 🙂

@MillStone oh that all sounds really positive. I'm with you on the low mood, stress and anxiety. I know that my complete focus on my symptoms, above all and everything else, is making it worse but I just seem powerless to get out of it because I'm so ill - it's a vicious circle.

I'm making small steps to try and address it - I've left some of the Facebook groups, I'm just on the Positive path one and the yoga one now.

Anyway I didn't come on here to moan, just to say that my NAC has just arrived and yes blimey, what a smell. Luckily I got the tablets! Just taken the first one.

Morning @fedupofbed You're really not moaning. Please offload as much as you want to. We know how you're feeling

Aw thank you @MillStone you're so kind. And I know you get it. This board has been such a support over the months. Xx

@MillStone @fedupofbed interested to hear how you get on with the NAC. I've just spent a fortune on supplements and not sure whether to include NAC as well. It would be the only thing I'm adding in if I did so now. Last time I spoke to the naturopath she advised me to increase the quercetin and vit C complex I'm on so I'm now taking 4 times daily. This has really reduced the incidence of itchy skin I've been getting. Fatigue is under control.

Main thing I'm working on now is further repair to the gut as naturopath feels that the reason I am so sensitive to histamine is due to not being able to break it down well.

@TiddleTaddleTat sure of course, but to be honest I have no idea what works! I’m throwing so many supplements at this I sometimes wonder if they’re doing any harm.

I think I mentioned that I’m now also taking L-carnitine L-tartrate, but no idea if it’s doing anything either.

I went for bloods yesterday so maybe the results will reveal something re levels.

@MillStone it's true, I'm currently on 13 different things and so maybe I need to scale it back a bit! Plus it's costing me an absolute bomb. However I'd say it's worth it! Right now I'm enjoying a good phase but probably doing too much.

Yes, it's so expensive and also overwhelming!

@MillStone I've got the l-carnitine but not taking at the moment. Did you also take L-Theanine or did I dream that? It will be interesting to get your bloods redone as I do wonder what effect all these supplements have on our chemistry.

@TiddleTaddleTat so glad you're progressing but please don't overdo it!! Are you still taking the bovine colostrum? The naturopath I saw (but not seeing again) recommended it, alongside some other weird and wonderful enzyme supplements (for gut healing). They were all really expensive so I'm leaving it for now. Might try the colostrum at some point though! She also suggested a load of in-depth tests, again very expensive. Did you do tests through your naturopath?

@fedupofbed yes I'm still on the colostrum and increased that actually as it's meant to be great for gut healing.
I think I'm on some sort of L Thianine and L Arginine in another supplement but I can't keep up
Didn't do any of the additional tests as yes they were too pricey.
Naturopath interpreted me GP blood tests and was able to identify loads from that (for free)

@fedupofbed That's right I've been taking L-Thianine for a month or two. It's actually one of the supplements I'd be bothered about stopping because I think it chills me out.

Thank you @MillStone and @TiddleTaddleTat

I was going to hold out on any more supplement shopping till after Christmas but gah I couldn't resist- just ordered the l-theanine 😳. We will be rattling!

Hello everyone, I’m still on this train 9 months in.
I should have had this covid baby by now.
I am getting better slowly but surely and I’m now under the care of the chronic fatigue team at the hospital. They are amazing. So nice.
I have to drink 2 litres of water a day. Limit exertion (duh, didn’t figure that out already) and keep taking rehydration sachets.
I’m also on magnesium and zinc supplements.
I had a nasty blip at the weekend as I overdid it. And I’m feeling the head rushes of doom now because I didn’t learn already and have overdone it again.
But I know it will pass.
And all my heart monitor results say they could see my heart going from 47 bpm to 180 but the valves look fine, the rhythms are fine so I am OK.