Covid Lungs week 8 plus plus

[AndsLee]

Hope this has worked... Welcome all.

@fedupofbed @Egghead68 I thought my hr was getting better as the resting is much lower now but just tried the standing up, it went from 75 to 103, but then it goes straight back down to 80’s whilst standing still, is that normal?
I’m guessing the heart rate would go up a lot during an excercise class, it’s also 110 plus if I return from a walk?

@fedupofbed I had the liver and kidneys, plus diabetes, d-dimer, thyroid, calcium but not the others I don’t think.
Do any of you get your heart checked in any way? I’m so paranoid with the heartbeat changing on occasion and the stories I’ve read etc

Got a negative antibody test. As predicted I feel crap. Not because I now think I didn't have it. I know enough to know that all it means is that I don't presently have a detectable level of antibody. But because it means having to wait who knows how long for the understanding about antibody memory cells and T-Helper Cell changes to become more widely acknowledged. For effective mass testing capability for tests for those bodily changes to be invented and then become widespread. And then, maybe in a year or two, I'll have some sort of certainty about what's been happening to me.

I've got to say, with the rate at which so many of us here have been getting negatives, I'd say save your money until some point in the future when we have more genuinely trustworthy testing rather than something that's been rushed to market.

Sorry to hear that @alittleprivacy. It's more surprising when someone actually gets a positive as we all, mostly, seem to have negative tests. The T cell blood test will be the definitive one I think.

@alittleprivacy Ah I'm sorry. That must not have been welcome news for you! 💐 but no I had no intention of pushing for an antibody test as am convinced it will be neg! And then my DH will be so smug in saying... I told you so!

Yep T-cells all the way for us long haulers I think.

I am sorry @alittleprivacy but it seems that’s the case for most long-haulers. I think we all know we’ve had a disease unlike anything else we have ever experienced, with the symptoms of coronavirus, during a coronavirus pandemic, so therefore likely to be coronavirus.

Oops - didn’t read your post properly but have now and agree. A Gp who did a survey found only 20% of us test positive iirc.

The (retired dr) sister of a friend of mine has just had a positive antibody test. She told my friend that the tests are reliable if positive but unreliable if negative, so you could have had the virus but still have a negative antibody test

Yes that’s right - they are specific but not sensitive.

@fedupofbed and @Whatnext2018 great that your heart rates are so low at rest. Big jump on standing def sounds like POTS to me (huge disclaimer - no medical knowledge/training) which I think is considered benign, I.e. not an indication that anything is wrong with your heart.

Petition about aftercare:

chng.it/2sgRfXnmbZ

@Egghead68 thanks for the link to the survey

For those wondering about POTS, I was told by a dr in hospital that it looked like I had POTS. It did fit most symptoms, but the one thing that I always wondered about was the fact I also had a fast testing heart rate- not just the sudden increase when standing. I have seen a couple of people now on the Facebook group post that they have seen cardiologists. The cardiologists have said that they don’t think it is POTS, but just a post viral reaction - apparently other viruses can also cause this reaction from the heart. The cardiologists seemed to think that there was no danger from these symptoms and that they will in time go back to normal. They also said it can account for sudden drops in heart rate too (which I found comforting as I am now experiencing this too!)

Hopefully they are right because I have given up trying to get anywhere with my gps. They don’t even bother phoning back now!!

for everyone feeling rubbish today day 88 for me and the fatigue has put me in bed again xxx

I’m 5 weeks today and still feeling like I am turning a corner. I’m tired though, but not cripplingly so, I think it’s the shock of activity after a month.

@fedupofbed @lightsabre @WhatNext thanks for your kind words. I had a bit of a cry, think I'm just fed up and it's impossible not to feel depressed in this situation. In fact I think for me depression is part of the symptoms (I've never been a depressive type. More anxious!)

Thanks @Countingsheeps. I’ve given up on my Gp and my “urgent” cardiology spot of over a month ago. That’s reassuring. I do think my heart rate is coming down slowly with lots of rest and gentle exercise.

Sorry you are in bed again

Celebrating the start of week 13 with blood tests....so these were first mentioned about mid to late April and I’ve finally got them, all it took was the easing of lockdown so that a relative could drive across the country to collect me, then registering temporarily with a local GP. They took blood for the antibody test but they don’t think the lab will accept it as they are not doing them in these parts.
I see that for all the pain it’s been causing, my period has got shy and refused to turn up.

Hello all,

Are these negatives you've had from the NHS antibodies tests? I tested positive for antibodies this week. Bloodbout and result in within 7 hours!! Week 14 tomorrow and I must admit, as much as I wish I hadn't had it, knowing for sure what's causing me to be so poorly was a relief.

That’s great @isitorisntit. I really hope it means you have some immunity too.

(My negative tests were private Abbott ones. I am also eligible for an NHS one but can’t see the point in a third.)

Hi everyone, I'm so sorry to hear you've had symptoms for so long. I can't even imagine how hard that must be.

I was just wondering if you'd mind telling me - did anyone not have a fever/cough/loss of taste or smell but test positive?

I have had a tickly feeling in my throat since Monday, and as of yesterday pain in my sternum. Not sure whether I should book a test as these aren't the symptoms mentioned, but I keep thinking what if it is and I'm unknowingly passing it on?

@sotiredzzz nearly all of us developed symptoms well before swab tests were available (except to inpatients, royalty and politicians) I am afraid.

@Egghead68 of course, sorry I wasn't thinking.

I am just passing by to wish you all well and to post a short update on me.

I was on these threads in March-April with classic Covid symptoms but not swabbed because of the lack of community testing at the time. In weeks 3 and 4 I had the severe stabbing chest/rib pain that has come up quite a lot on here (on the right side). My GP (after a phone consultation) thought it was pleurisy and prescribed diazepam and naproxen for the pain.

The update is this: 2 months on, the stabbing pain returned with a vengeance, this time on the left side, and after a phone call with a different GP I was sent to A&E. It turns out I have an acute pulmonary embolism on the left side, and signs of a resolving one on the right (which is likely to have been the reason for all that stabbing pain in March-April). The radiology showed other lung signs consistent with a history of Covid pneumonia.

Of course they don’t know for sure whether it was Covid that caused the clotting (especially as I wasn’t tested or hospitalised at the time), and there will be more investigations to establish what went on and what my risk of further clots is. But I would urge any of you who have severe stabbing chest pain (pleuritic pain) not to assume it is just one of those things that you have to live with after Covid. Sometimes it requires urgent medical attention. They do seem to think provisionally that a combination of Covid plus the fact I am on HRT may have been triggers.

for all those of you suffering.

Hi @LarkDescending I remember reading your Posts several moths ago. Sorry you’re still suffering. But good that you’re new GP has been more proactive.

Do they think the new left clot is new, or a problem from several months back that has flared up? Are you taking thinners for it ?

I don’t suppose you know what the other lung signs were that showed Covid pneumonia?

Thanks and I Hope you’re recovering well.

After a long spell of felling good, I've got a sore throat burning nostril and dizziness.

Anyway, in some good news I have been in touch with a neuroscientist from KCL who is happy to answer questions of people with long tail covid. I'm doing it through slack but if any of you have questions for a neurologist I'll try and get them answered.

I've also suggested that people might be happy to take part in research so if you are let me know.

There's also a campaign on both slack and the 1in20 fb site to raise awareness. It's called #longcovid #messageinabottle where everyone experiencing this puts their photo holding a placard with their details and these are being sent in a bottle to the PM. Also an open letter signed by everyone and there's a video being made which hopefully will get on national tv.
I'll get the details of the Dropbox and anyone who wants can put their photo in.

@godhelpusall sorry you're feeling unwell again after many good days! It totally messes with your mind this wretched illness!

Yes I would like to be involved in potential research via the KCL neurologist. Shall I PM you? Not sure how to do that as amcurrently the app.

Coincidentally I've just been on Slack for the first time in weeks (have the dubious pleasure of being able to post on their 90+ days thread from today!) and seen that a GP from the US has composed a long letter to be sent to WHO.

I've been thinking about writing to my GP and my MP too (although she's useless!). Not sure I'd currently have the energy for the message in a bottle campaign but I do think we need to raise awareness! I'm confounded that long haul Covid is never mentioned on mainstream media! Even at a 5% hit rate, there must be 000s of cases worldwide by now at mid June. Spain apparently have their own online group now called 'Persistent Covid' or something like that......

It's not 5% - more like 20% or more.