Covid Lungs week 8 plus plus

[AndsLee]

Hope this has worked... Welcome all.

HP=GP!

I think very few of us long-termers are getting positive IgG tests. My theory is that we didn’t mount an effective immune response which is why we ended up with these long-tail symptoms.

@Fedupofbed I'm completely well thanks. Perhaps a bit lazier. I had a negative antibody test, but I'm still certain I had covid. The symptoms were just too obvious.

How are you now? Are you feeling better at all?

Egghead68
I’ve wondered that too - having got negative from a home test, but ongoing Covid symptoms. I’m now waiting for the results of a GP/hospital antibody test, but I’m preparing myself for that to be negative too ☹️
It does seem to be a weird anecdotal trend that lots of people with long term symptoms are testing negative while souses/friends/colleagues are getting positives having had no symptoms! I’d love to see some studies on this...
Where do we find out more about T Cells? Never heard of this theory.

Just wanted to say a big thanks 💐 for all these posts, I’ve been quietly reading them for weeks and they’ve been really keeping me sane.

spouses

@whatspickle78 the T-cell idea is pretty standard. I know very little about immune responses but basically it seems they are complicated, multilayered and don’t always involve antibodies. If I can find a good link/explanation I’ll post it.

@Whatapickle78 this might do. Science is one of the most prestigious journals:
science.sciencemag.org/content/368/6493/809

Week 13 & a negative NHS venous test this week.

I also had to have an urgent chest XRay this week due to increasing plueretic pain, right side of chest.

The irony!

Well, 3 G.Ps, 1 Respiratory Physio, 1 Speech & Language Therapist, a Respiratory Nurse & an Occupational Health Nurse are sure I had it.

I rang the British Lunch Foudation in March as I was absolutely desperate for breathing support.

I have felt as unwell these past 7 days as I felt mid March.

I nearly ended up in hospital in April.

Left side of chest, that should be.

Ah @onlinelinda that's great news. I remember you you were very supportive in much earlier threads when I had just joined. Yes another one here with a negative antibody test!

Well 15 weeks in I'm still 'fed up in bed'. It's been so hard but there is definitely non-linear incremental progress. I'm up and down the stairs getting drinks a lot more often, my sleep quality is better and whilst I still get a bonkers array of symptoms they more often tend to come for an hour or two then subside rather than have them for days. It's just slow going though and mentally as well as physically tough. Every night I still hope I'll wake up the next morning feeling dramatically better but realistically it's not going to be like this for me, it will be very gradual and there will be lots of frustrating plateaus. But I remain positive I will get there.

I'm glad to read that this thread has been a support to others in our situation.

I'm sorry you're still so ill @Ernieshere 💐

@fedupofbed Thank you & I hope you feel better soon.

I wish the tinnitus would go mostly, I have had it since day 1 and my head/ears are constantly buzzing like when the T.V used to turn off at midnight 40 years ago, and it made that awful noise, unless I am imagining that!

Aw that must be absolute torture @Ernieshere . I shouldn't tempt fate but that's one of the few symptoms I've not had. Yet! I really hope it eases up for you soon.

Hi everyone,

After a few good days I am now in another dip... a new symptom for me is a very low heartbeat... it’s just gone down to 48 bpm. I have had high heart rate for weeks and got used to that, and this has put me back to the terrified state again. I phoned gp yesterday, but they didn’t even bother phoning back, getting a nurse to phone back instead who told me a) not to worry as long as I wasn’t dizzy ( I explained I had been dizzy for weeks!) and b) not to worry she was sure I would get a bit better everyday... I tried explaining that I have now been ill for 3 months and it wasn’t exactly a linear recovery, but she didn’t listen.

Has anyone also experienced the low heart rate? Has it made you feel worse at all?

Many hugs to all of you - sorry if you have already mentioned any of this, but I haven’t got the energy to look back through right now. Xxx

@BonnesVacances

Thank you for posting about your daughter's journey with PVS/ME. It sounds incredibly difficult. I really appreciate what you have added and I have learnt so much from hearing people's stories of troubled recoveries, good days and bad days, and slowly taking steps forward.
I think your point about prioritising mental health is absolutely crucial. As you say the strategies to manage ME or a PVS and depression are not really compatible - we can't go for runs, speak for too long with friends (exhausting), etc.
I have found enjoyment in things that take less energy like bubble baths, drawing and painting, playing music, listening to music, reading novels and catching up with old comedies. Still, even a little of each of these things can tire me out, but being kind to ourselves and our bodies as they heal has to be key in helping us feel better - even if it's not 'recovered' yet it's better than we felt last week or last month.
Hope everyone has a restful and calm weekend.

@Egghead68 I was thinking the same re all the negative tests and the long term symptoms suggesting not enough antibodies. My 20-year-old son had no symptoms and he has been with me throughout - If I had he must have had it too in an asymptomatic way so I think I will try and get him tested too when tests are available.

Im actually interested to see what Boris Johnsons Antibody test shows as.

Very very exhausted today.
Saw this in the fb 1in20 group, will attempt to upload screenshots- why are our blood tests all normal?

Really helpful - thank you very much @letsbesensible. I hope you are less exhausted tomorrow.

@LetsBeSensible That's some fab information, right there. Thank you.

Ok, at day 13 of not feeling rubbish! For the last wee while I've been doing ok, bar minor tummy niggles, an annoying but mild sensation in my throat, which I think is GERD related, and a pesky sunburn rash.

Today, I haven't felt quite as good. Minor SOB. But...this evening my period started. Now, my last period was brutal. The sunburn rash was horrible and painful, and the SOB was worse. This time, rash still hot, but I wouldn't say painful. SOB, can get on and distract from it. I always got very slightly out of breath with my period anyway. I suspected this month the symptoms would diminish. I truly think our bodies need to relearn not to react to changes.

Still slightly intolerent of bread.

Eyes no longer bloodshot.

My MP is passing my email on to the Scottish Health Secretary...

Hope you're all ok?

Thank you for the new thread, hopefully I’ll remember lol!!

Today was the worst day I’ve had for about three weeks and I spent it in bed mostly with exhaustion and the strange sharp nerve twinge pains back and a headache and sore throat. I’ve been stressed with working from home and coping with kids in lockdown and the news and been sleeping really badly which has set me back physically and made me feel emotionally a bit low. I’ll be to see the back of this week! to everyone having a tough time with this and here’s to a peaceful weekend.

Sorry about your dips and bad days @Countingsheeps @Fishflakes and @AndsLee. It just keeps on giving, doesn’t it.

Cheers Egghead, sure does.
Thank you for the Science link, my concentration is crap lately but I appreciate links to read on better days to try to make sense of this virus.

@egghead68 - thank you. Although I don't feel as good today, I still don't feel rubbish. I'm kinda chuffed that I don't feel as bad as last month. So, a dip on day ratio, but an improvement from the perspective of monthly body changes. Hope you are doing ok? X