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

I think it will be worth it for a break over Christmas @TiddleTaddleTat !

@MillStone I've stopped taking my more obscure supplements as a precaution but I've just read that a rash is one of the side effects of hydroxychloroquine, which I've been taking for about 3 weeks 🤔. In a way I hope it's that rather than yet another unexplained random Covid symptom.

Just had an email (yes at 10.45!) from my rheumatologist. The bloods he took are back and my ANA is now negative (it was previously positive). I wasn't expecting this and am really relieved. I guess I can now come off the hydroxychloroquine anyway. Wishing everyone a good night's sleep.

Morning all and may this be a new month of fewer symptoms for everyone.
Today I saw a new BBC article reporting on lung damage trials with aims including whether long Covid patients are temporarily or permanently affected by lung impairment post-Covid.

www.bbc.co.uk/news/health-55017301

Tentative early signs here that the supplements are having an impact... the combo for me of antihistamines, quercetin, and the niacin seems to have made quite a bit more difference on top of the low histamine diet (been on 5 weeks) and all the other supplements (been on over 8 weeks)

@fedupofbed that's great news that your ANA results are back in normal levels!!

I've been to see the asthma nurse today, they've changed my inhaler to see if that improves my breathing. I didnt sleep too well last night with the pain in my joints...the nurse said its probably linked to the covid and to give it another month and if things aren't improved to go back up.

Thank you @TiddleTaddleTat and that's really encouraging about the niacin. Crossing everything for you. I haven't started yet as I have to wait for this awful rash to disappear. I'm now off all meds and supplements for a bit.

I think there was another poster who had positive ANA and was wondering how they were getting on? @Whatapickle78 was it you? Many apologies if it wasn't, and hope you're doing okay either way?

@amyj606 I hope the new inhaler helps with your breathing 🤞🏻.

Hi @fedupofbed yes it was me! Good news on your ANA disappearing, do they know why and how that would happen?
My Rheumatologist looked over all of my notes and realised (which my GP had missed) that I’d tested positive for ANA back in 2017 which is round about when I was diagnosed with Hypothyroidism. He said at this stage they’d put it down to that... though other conditions can also develop over time etc.

He also reconfirmed again a diagnosis of reactive arthritis as a result of Covid, which was useful.

I’ve still got some fatigue, brain fog and back and joint pain - but my trajectory is still improving which is good. I’m plagued by itchy skin this week though which is driving me absolutely bonkers! My GP has also - unrelated to this- prescribed Fexofenadine for my long Covid symptoms... I’m still waiting for the prescription to arrive though so haven’t started yet.

I also ordered Niacin after reading your posts @TiddleTaddleTat and @AndsLee!

But I’ve ordered the non flushing expensive Solgar one by mistake doh!

Hope it still works a little - started taking it today. I’m also on quercetitin etc...

I hope you all continue to see improvements! Was good to hear about your reclining cycling @Fedupofbed, I’m glad you’re able to get your heart going again it must be such a relief, even if it’s not the runs you’re used to.
Love to all
Xx

Hi @Whatapickle78 good to hear from you, and glad you're on the up! Ah, so that's interesting... your ANA levels were raised before Covid. My rheumatologist only sent me a quick email but a friend who has a chronic autoimmune condition said that they can change (hers often varied) and not to put too much significance on ANA levels on their own.

Unfortunately my recumbent bike is gathering dust on the advice of the ME physio but hopefully at some point I'll be able to some pedalling!

I have actually been taking DAO supplements. I think they make a difference...

I am feeling really low about the reports coming about from Oxford/Sheffield Uni's recent findings - lung damage identified using a new scan technique. Have you read about this?

@AndsLee just checked this out, it is concerning. I note it estimates a prevalence of up to 10% with the lung damage, I suppose we don't know whether it will resolve yet. I have generally tried to avoid reading about the organ damage simply because I don't feel there's much I can do to resolve than now beyond what I'm already doing to optimise my health.
I don't want to go overboard but I'm quite evangelical about the latest 'regime' on Gez Medinger's video . The Niacin has made a definite difference for me, so much so that I walked up to 5 mins outdoors on three consecutive days and have not had a jot of PEM. I've been housebound for months. I've also not had palpitations or tinnitus. Fatigue is lessened generally.

@AndsLee can you link to the DAO supplements you're on? I wouldn't take them all the time, just before special occasions like Xmas.

@TiddleTattleTat They're called DAOFood Plus - the capsule contains DAO tablets, Vit C and Quercetin...:)

www.amazon.co.uk/DAOfood-Treatment-Deficiency-Capsules-Gastro-Resistant/dp/B07T811PFT/ref=sr_1_2?dchild=1&keywords=DAO+Food&tag=mumsnetforu03-21&qid=1606917648&sr=8-2

@TiddleTattleTat Niacin is included in my Multivitamin each day, so I have that under my belt already.

Hi @AndsLee glad the DAO supplement's helping. Yes I'm concerned about that news too especially as breathlessness is still an issue for me. The only solace I have is that my lung function tests were good.... that must count for something (hoping but not really understanding)??

I'm totally overwhelmed, muddled and down about things at the moment . I might try those supplements as I'm struggling with the low histamine diet.

@TiddleTaddleTat that's fantastic about the niacin (I'm still waiting for the rash to go). Just wondered if you had any thoughts on the relation between this protocol and POTS? I finally checked my heart rate on standing using my oximeter instead of my Fitbit and it was much higher- FB said 82, oximeter 115! So now I'm ramping up all the POTS stuff again. Do you wear compression socks? Also do you just add extra salt with meals (my previous salty crisps and peanuts are a no no with the low histamine). Sorry to bombard you with questions.

This is just all too much for my poor little addled brain 🙇‍♀️.

@AndsLee thank you I will check those out

@fedupofbed yes I am still doing the treatments for PoTS . On the PoTS U.K. website it says that MCAS can cause secondary PoTS and that is now what I think is going on for me. I wear compression tights - medical grade , up to waist high, all day every day. Drink 3L of fluid and up to 10g of salt as indicated by the PoTS clinic. These seem to have really reduced the incidence of dizziness although alone they were not as effective as when I started antihistamines and Niacin.

Thanks so much again @TiddleTaddleTat - I'd be lost without you 😊

I just realised... I haven't taken my antihistamine today. I feel ok! I am taking 2 lots of antihistamine though, and I think the famotidine is helping loads.

Just to recap... I also subscribe to this MCAS theory. I am taking multivitamins and minerals, turmeric, probiotic, vit D3, DAO supplement, loratidene in the morning, famotidine at night. I feel better, for sure. But I still get the odd occasion where I feel the air I breathe in isn't going anywhere. This is now what's worrying me. I have, however, just read the Uni of Sheffield article about the new scanning technique and identifying lung damage. Turns out only 7 people have been scanned out of the 40 proposed, so I have calmed down a bit. I haven't really had issues with my lungs...but I am fully aware that that means nothing!

Hi all,

Great to see some who were here in the past are almost fully recovered, it gives some hope and sending love to those still struggling 💐

I had quite a bad few weeks a few weeks back, not too bad since, although a down day on Saturday (ovulating, I think)
I’ve noticed that if I feel even a teeny bit stressed/anxious, my symptoms return almost immediately-the vibrations inside, strange fizzy feeling etc. My symptoms also seem to be felt more as I’m lay down at night and an just falling off to sleep, I have all sorts of weird little feelings throughout my body until I fall asleep, difficult to explain, does anyone else experience similar?

Reading through the threads and bought some Niacin 100mg, how much do you take? Little worried to take it as am on a whole plethora of other things! Vit D3, C, Zinc, B3, Iron, anti histamines, Omega 3, probiotics etc etc..

I so long to just be rid of this and feel normal again. I’m also starting to crave a drink sometimes but am really scared of the reaction. My last drink was Good Friday, I didn’t realise I had it, but had felt strange since March. I had around a glass and a half of light, green wine as I sat in the garden. That evening I felt really dizzy and woke up around 3 am feeling the worst I ever had. Fizzing throughout my body, beating heart, hot etc. It went on for hours, I remember coming downstairs and trying to calm myself down by watching videos of our holidays to Thailand etc, it was very frightening. Can’t chance that again! Anyone had a drink and all is well? Coffee too, it’s been 7 months without.

@Whatnext2018 hi, good to hear you are no longer relapsing after that period a few weeks ago.
Are you already taking B3? I would say you'd need to swap out the B3 for the Niacin as they are the same thing - perhaps your existing B3 is in Nicotinamide form?
It's always worth checking with your GP if you are self managing lots of supplements. I have a naturopath who supervises mine and I checked with the GP about the B3 and antihistamines, in some people it may not be adviseable so definitely worth getting it checked by a medical professional or well qualified alternative practitioner if you can.

@TiddleTaddleTat Thanks so much, just checked and I'm already taking complex B vitamins (just a small bottle from the supermarket) the majority of my other vitamins are pricier, online/chemist ones, 🤔 will have to look up if I can take them both at the same time, I’m guessing I’m better just taking the B3, I do need to consult with someone really.

I can’t find the video though, what was the recommended dose for this? And do others take the selenium & quercetin too? I don’t take these two

@Whatnext2018
This is the video

m.youtube.com/watch?fbclid=IwAR01X5upRHxUzxf4Af-sp-7ZM1IwlZ5Xa8yN6WYYWY8DgWMdDbMIbfBF4wI&feature=youtu.be&v=sICD0Kn6pR4

And This one has just been posted m.youtube.com/watch?fbclid=IwAR09X50fjceFijCHanMZdXK8lpqC0I88ymFrjNXTXHfcK7mzM0PwqkWyu6U&feature=youtu.be&v=uhCynNqm-oQ
Haven't had time to watch it yet

How is everyone doing this morning?

Check in - felt pretty good yesterday. Also feeling pretty good today. Woke up this morning with a wee bit of allergy shenanigins going on, but didn't take an antihistamine yesterday so I am not overly surprised. Also, the symptoms are mild. Interestingly, read in an article that progesterone and estrogen can influence behaviour of the MCs... No shit huh! Explains why our cycles are playing a part here.
The article suggests this is one of the reasons why women are more prone to some auto immune disorders than men (and I would therefore go out on a limb and suggest this is why women are more prone to Long Covid). I am also reasonably convinced that there is something to do with being pre-menapausal too. Anyhoo, the article is below:

www.jimmunol.org/content/179/5/2673#:~:text=Reproductive%20hormones%2C%20particularly%20estrogen%20and,or%20diminish%20disease%20(108).

I have totally calmed down from reading the articles about lung damage yesterday. It seems like these folks were actually hospitalised with Covid pneumonia, so the damage isn't "hidden". They are still experiencing symptoms - PERSISTENT breathlessness. So the damage was there all along, it hasn't worsened as it were. Indeed, it must have improved if the conventional scans are not picking this up. To put this in perspective, this is more "OK, lungs still haven't healed in the way we thought". It will be interesting to see what happens when they do start to scan people from the community that have not been hospitalised. This is the group I will be paying attention to... The evidence so far suggests that things improve with time, it just takes more time than anyone had imagined, even with people who had very mild acute infection.

What I keep reminding myself is... Do I feel better than 6 months ago? 6 months ago was June. I think in restrospect, it was May that I felt the worst in, so hell yes I feel better! I feel 90% back I would say, and I feel a damn sight better not that I am beginning to understand what is happening!

Also... Folks? There are trucks arriving today with vaccine. Today. :) xxxxx

Also, note in that article - stress and anxiety also play a significant role in Mast Cell Activation. I've never denied that I have anxiety - but the anxiety has always been about the unknown symptoms, and the lack of medical support untangling this. This is what has made me feel insecure, and as a result far worse physically no doubt. I definitely think having an understanding of what potentially is going on (and the evidence is stacking up towards MCAS) I feel better - because I am less anxious.