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

Thank you @MillStone, I will aak Audiology if they have had many of 'us' in with the same problem.

A little bit about antibodies today.

I said before, that a doctor from Occupational Health who specialised in tropical diseases etc, told me that these tests are of very little diagnostic significance

He said, do not take any notice of a negative test.

www.bbc.co.uk/news/health-54696873

@Ernieshere thank you for posting. It sounds like there is a possibility that we might get infected again. It's a horrible thought, but sounds hopeful that any second infection would be milder than the first. I still take all the precautions but have a DD at school and an essential worker DH so there is always a risk they will bring it back to the house.

@TiddleTaddleTat

Yes, same here, DC at School and myself a keyworker.

But, as my friend & colleague said, who also has long covid from March (work in same place!)
If we had been admitted, they may have treated us acutely, such as ventilators and this may have had a devasting effect on us, and the fact we managed it at home was probably safer for us as they had little knowledge back in March with regards to treatment.

If we did get it again, I think an an admission to hospital would be less invasive.

Also to everyone, what I meant to say about the Doctor I spoke to was that he said, just because we got a negative antibody test in June, it doesn't mean we haven't had it, as some people believe.

@Ernieshere and @TiddleTattleTat

My doc said the same - negative antibody means nothing...

I know people who work in social care and NHS who say quite a few who have had virus had negative antibodies. However, some people who have had positive antibodies, have never ill with Covid! Seems to be a trend. I've just marked 7 months and had negative antibodies test last week.

Just came from the fb group to share this gem

@LetsBeSensible hahaha!! Yes 100%

Hi, a belated reply to @Myusername2015 ... no real constructive advice but just to say really sorry you're having such a rotten time 💐. Your symptoms do seem very Covid-like. As others have just commented the antibody tests aren't hugely reliable, especially with the news today that antibodies can be shortlived. I too paid privately and got a negative result. My GP mentioned a while back that they would be rolling them out free of charge but I didn't follow up as I'd already paid. May be worth checking with your doctor? But then don't be too disheartened if it comes back negative.

@LetsBeSensible that made me laugh so much

Is anyone still having body fizzing/tingling since March?

Mine has started again in the last few days. When does this stop.

@Whatapickle78

Thank you so much for all the info regarding perimenopause, I have my G.P telephone appt today, I hope they listen!

Useful article about immunity- reassuring re antibody tests
theconversation.com/a-new-study-suggests-coronavirus-antibodies-fade-over-time-but-how-concerned-should-we-be-148957?utm_medium=email&utm_campaign=Latest%20from%20The%20Conversation%20for%20October%2028%202020%20-%201770417166&utm_content=Latest%20from%20The%20Conversation%20for%20October%2028%202020%20-%201770417166+CID_cc816b6bff7b3751fe48c8db091550d7&utm_source=campaign_monitor_uk&utm_term=A%20new%20study%20suggests%20coronavirus%20antibodies%20fade%20over%20time%20%20but%20how%20concerned%20should%20we%20be

@Tootsey11 hello I'm 7.5 months now and still have body fizzing and tingling. Usually hands, feet, calves. It varies in intensity and can move around a bit but still very much one of the enduring symptoms. Sometimes with burning sensation too. Hope you're doing ok.

@Ernieshere great! Hope it goes well x

@LetsBeSensible

Well, I got 3 choices (I think)

SSRI - Mirtazipine - to help insomnia
Mini Pill
HRT

Im going to speak to her next week again.
She was o.k about it, but concermed about risks with HRT.

Ive looked some of it up, some say low risks, some say high. Its so difficult to know.

@Ernieshere I'm on HRT my doctor thinks the risks are low. It helped my insomnia massively, although it's back with vengeance after Covid.

The antibody test will pick up if you have ever had any form of coronavirus even if it was a common cold virus.
My daughter has antibodies against coronavirus but has never has Covid 19 she did have a viral chest infection age 1 of a coronavirus strand.

Hi all. I've been feeling much better since my last relapse at start of September but whaddayaknow? This morning the oh so familiar feeling of blood running cold and then feeling sick dizzy etc. The problem is that my son has been ill since the weekend with a cough/ cold and although his test was negative it's hard to say how effective it is as it barely got to his throat! So I've had a test today and once again I'm waiting... if it's not reinfection then it's a relapse, timed just before my period is due. I'm probably peri too so any information welcomed!
I had the coverscan mri a few weeks ago- anyone wanting a full body scan it's free you just register.

@godhelpusall sorry to hear that. I share your pain and angst. Let us know your test results. My whole family have had colds (but no specific 'COVID' symptoms), I've now caught it, feeling really ill and my breathing's gone tits up. My chest feels congested this time though whereas before it's always felt very dry. My temperature is rising but not yet officially 'high'. My gut reaction is that my body/lungs cannot withstand any slight infection but I'm mulling over whether or not to get retested. (I definitely will if my temperature goes up any further). I've also just learned there is covid in one of my DC's year groups, and that's playing on my mind. I just want to get off the coronacoaster please.

I finally have some melatonin, prescribed by my GP, which I'll be road testing tonight. I haven't asked about HRT yet - waiting to get through this latest blip first.

@godhelpusall sorry to hear that you are feeling rubbish again... hopefully it will be a short setback.
Also @fedupofbed unfortunate about the cold. If it's any consolation, when I told my naturopath that I had caught a cold she said it was a good sign! Apparently people with CFS/ME tend not to get symptomatic colds... not really sure how/why?! In any case catching a cold and having a 'normal' immune response is a sign that things are working as they should be.

Thank you @TiddleTaddleTat , yes that does make sense and I'll take reassurance from that. Feeling a bit emotional tonight... it just feels never ending sometimes doesn't it? I know you all understand.

@fedupofbed I get that too. The endlessness of it all. Apparently there's an October slide too. People with chronic illness often feel worse at this time of year

@Ernieshere that’s lots to think about then. What types of HRT did they recommend? Might be worth looking at the Mumsnet threads on HRT for some views and info.

@fedupofbed and @godhelpusall so sorry symptoms are coming back. My husband has a cold and cough too bad I’m dreading getting it in case it spells another relapse 😔

Think reinfection rates are still very rare, so fingers crossed it’s ‘just’ another bug.

Get well soon xx

@TiddleTaddleTat we flipping well do get symptomatic colds!!!! If anything I’m so used to talking myself into keeping going that I have ignored the beginnings of many a cold and tummy bug. Feeling like I’m coming down with something is situation normal. When it hits it’s stride, then you know it’s a real illness and not just a bad day.
@Ernieshere interesting options. I have an SSRI and I use Serenity 14/28 days. I can’t have the mini pill due to migraine? I’ve never done well on any pill I tried so gave up on that years ago. I think with SSRI’s what suits one person won’t suit another, you may as well try and see for a few weeks. It’s not that big a deal to stop it if it doesn’t suit.

Interesting new science theory with possible treatment
here