Covid lungs long term. 18+ weeks support thread

[LetsBeSensible]

For anyone struggling with getting over covid, relapses and the like.

Started with the “covid lungs...” threads in March 2020, before “long haul covid” was recognized. New joiners welcome.

@Fishflakes my gosh that just sounds really hard for you and your family. It does sound likely to be COVID, and it's common that it will present differently among different family members. Agreed there just be genetic markers that cause this, potentially COVID also manages to latch on to weaknesses and previous injuries /conditions, this happens in the acute and chronic phases, it seems.
From my conversation with the naturopath she asked specifically about how much vitamin D and C I was taking when initially infected and the answer was 0, but if you can take good doses of these (and encourage your family to do the same) it might help a bit. At least to feel you are doing something.
I hope you have local support from neighbours, family , friends to do things like food shopping and helping out? It's terribly hard , I hope you can avoid exertion and stress . X

@TiddleTaddleTat I sent it to the dr but he didn’t mention it when he replied (and I couldn’t talk to ask). I get that RHR should vary a little but mine is always on the up or down and I can’t find any lifestyle reason at all. I need to do some research I think.

Thanks TiddleTaddle that is very kind.
Yes we have all been taking vit D, but C is a good shout too. Thanks. DH is here and fine luckily so he’s running things with DC. Hope you have good support too. It sounds like you have been really badly affected for a long time .

Kitcat sorry you have that recurrence- I tried to ask my GP about that- whether your immune system fighting off another bug could resurrect old COVID symptoms but the GP didn’t seem to really understand what I meant. But I feel like it’s possible. If I get really tired because I have slept badly the symptoms come back mildly so it makes sense to me that could also happen when your body is under stress dealing with something else like a bad cold.

@AndsLee I have been mainly OK all August, the last few weeks have had either a scratchy throat or feeling like something is there, first I thought I caught a cold from a friend but not sure anymore. How are you?

What is the latest about the Covid recovery clinic that @Porcupineinwaiting mentioned? How do you get hold of them?

@Moodgie Yeah I am good ta. Mostly OK too. Just wish I was 100% ok...

@AndsLee I know... I feel tight chested tonight, not had this for ages. Wonder if I have overdone it and body is telling me something. Back to work now (school) and did a 10 k walk today. Wondering if that’s the case.

@Moodgie sounds likely. I had some minor symptoms revisit this week, but mostly I still have the breathing through dust sensation (though haven't experienced it much today, and the burning skin (though that has only just started just now). Bah!

@Moodgie the gp referred me to the COVID recovery clinic which is run by the infectious diseases department of the city hospital. Several people on these threads have been referred likewise but we all seem to live in Sheffield. I assume that other NHS Trusts have something similar? I'd hope so.

@Porcupineinwaiting Thank you.

@AndsLee Ahhh, this is just so frustrating. Scared about a full blown relapse but hopefully this will not be the case.

@Moodgie I know! So close but yet so far...

We are in Sheffield, ds has been referred to Covid recovery, has anyone been yet?

Those of you off to Covid Recovery...ask for a C3 and C4 Complement blood test? :)

@AndsLee I have my first COVID clinic phone consultation on Tuesday (Sheffield). What's T3 and T4, is that thyroid?

@AndsLee ah sorry! Yes c3 and C4, just looked them up. Autoimmunity. I'll ask and see what they say

@Nat6999 yes I've been. Had an initial consultation where I detailed what happen in March and what's been happening since, since then they are running a lot of tests.

I am not sure they have any answers as such, but they will check for damage and to exclude other causes of ongoing symptoms.

I'm going to ask my GP tomorrow. I think...we might be on to something...

We need to start using our numbers. @Criticallythinking tested low on c3...I am not surprised. We don't have antobodies, right? And low C3 indicates a severe infection. I think this is what we have been looking for, the virus has wrecked our defences. Now, if we pull our resources, let's see if this is a consistent. Bottom line, I have suspected we're going to need a kick start. If that is the case, the numbers game will help us...

@AndsLee sorry for delayed reply- is it likely the deficiency will repair on its own? I’m waiting to have a follow up set of blood tests done now.

@fedupofbed I’m feeling quite low at the moment as my symptoms seem to swing quite violently from fine to not fine and I’m struggling with that!!

Having a day where normality and recovery feel so far away

@AndsLee what were your white blood cell counts like on your blood tests? I have only just requested the full results from 2 blood tests taken in May and July. GP said all normal but on close inspection my white blood cells were all low in May, and even lower in July. Basophils only just above 0 on the second test. Also very low on ferritin (15ug).

@Criticallythinking I really don't know. Do you think your hubby might know?
@TiddleTaddleTat that doesn't surprise me at all. My bloods have been fine so far, inc. ANA, but also low in ferratin! Now, this could be because of the omeprazole, but it's also a symptom of C3 deficiency...

@AndsLee it’s really not his area as he specialises in bowels...at the moment he’s very frustrated that he can’t fix me and agrees the whole picture is weird. He does discourage me from looking for answers online though and has a lot of faith in the medical profession that they will get to the bottom of it... wish I was so sure

@Criticallythinking I'm not so sure either, so gonna do what I can too...

Sorry to intrude upon this thread again. I was on some previous 'lungs' threads but wouldn't really describe myself as a 'long-termer' in that I got sick in March and had a bad time with it, but would say I've been consistently better since June. My lungs still ache slightly when I lie down at night, but that's about it.

DS has been back at school for 2 weeks and...you know the rest. Temperature 37.7 this afternoon, tired, listless, snotty. I appreciate that there are other colds around, but we live in a high transmission . area and I am absolutely dreading DS and us getting ill again (and very likely not being able to get a test again). DS was just feverish and tired for some days last time, but he is scare and I am scared not knowing how it will go if we catch the bloody thing again. I just wanted to tell some people who will understand

@everythingisginandroses it’s a very valid fear, I’ve been trying to gently allow myself to think what I would do if I got it again, or got a cold or flu which brought it all back...I have the practical side sorted, it’s more the mental....I’ve got a list of box sets I never bothered to watch, they will keep me company at night. Hope it’s just a hit and run cold.

Hi All

The last few days, I've been feeling nausea in the mornings. I've been feeling spacey, and I have just taken a "Teams" call on my headset, and think I am sensitive to noise. My temperature is higher than usual, but not fever high. Oh God...do you think I have this again?