Covid Lungs week 8 plus plus

[AndsLee]

Hope this has worked... Welcome all.

I'm in Week 11 now - X-ray from last week clear, blood tests ok - showing no inflammatory markers and antibody venal test negative. According to my GP 'it's unlikely you've had Covid then'. Short of breath still affecting all activities so have insisted on a referral to a respiratory team as I 'haven't got Covid' which my GP very reluctantly agreed to. I've asked for a referral to the Ear, nose and throat Dept too due to the pain I'm getting in my back/chest after swallowing but GP said wait for the outcome of respiratory first. I would imagine there will be a very long wait. I am hoping that all of this will die down and things will improve but at least I'm in the system now. I look back to a month ago and I do feel stronger but can only do about 30% of the activities I was doing prior to and am still in pain and fatigued.

Good luck with your antibody test @alittleprivacy!

@Yolosodoit Can we ask for a TCell test?

There isn't one capable of mass testing yet. There will be though and as far as I can tell the T-Cell changes are permanent so there is no worry that if one doesn't come soon enough, it won't work for us. There is every chance that those who got negative antibody tests would have tested positive a month before but in many people the antibodies recede quickly while other never produce them in large quantity. The T-Cell response is a very good indicator of long, long term immunity though. And possibly to all coronaviruses existing and maybe even future ones. So fucked up as we have been for months and as far off peak health as we still are. Eventually we'll be like Wolverine! To these viruses anyway!!

I was 50/50 on whether I'd get the test knowing what I now know about the T-Cell response and how that means the antibody test is not a trusted method of confirming all past infections. But it's only €80 and until a T-Cell test exists it's the only hope of confirmation that I have. I just hope I don't get too depressed at a negative result.

@Lightsabre

I self referred to the Covid Team by email, they got back to me the next day. Always remember if the G.P is reluctant in the future to refer, ring them yourself and ask to self refer. I fully recommend it.

The Covid team consists of a Physio, O.T & SALT.

The SALT might help you with the swallowing pain.

I also rang the British Lung Foundation in early April and they are great.

I cant believe your GP thinks the Antibody result means you didnt have it.

My god, we are going to be hearing this for bloody ages. Its so annoying

I know this has been put on another thread (or this one?) by a helpful poster

Its very interesting.

www.telegraph.co.uk/news/2020/05/30/patients-test-negative-antibodies-may-still-have-immunity-against/

Thank you @Ernieshere - I don't think we have any Covid teams yet here (SE London). I might ring St Thomas's or Kings Hospital in Central London to find out. I could really do with SALT input as I can't laugh without it hurting too. I suppose it's unlikely I'll get seen as I haven't had a positive swab either but I'll try. Whereabouts in the country are you?

@alittleprivacy 'Eventually we'll all be like Wolverine' 🤣🤣

@alittleprivacy The Wolverine! Thank you for this, just what I needed today!

@Lightsabre, our team takes people that have or havn't tested positive. Tests wern't available in March, only for overnight hospital admissions.

Ring the hospitals, ask for the Therapy Department. Best of luck.

@Lightsabre

Try these, they should point you in the right direction.

Who the service is for: Southwark residents that need Physiotherapy a postural stability instructor or a rehabilitation assistant.

How to access:Contact the adult therapy rehabilitation team directly, or ask your GP.

0203 049 8960
Dulwich Community Hospital
East Dulwich Grove
London
SE22 8PT

@alittleprivacy can I ask how you know this about the T cell immunity being longer lasting? I have been trying to find info on it but struggling! Really hope you have found some good studies. I agree, I would quite like an antibody test just as nothing else is available but am worried how I will feel with the negative result if that's what I get.

Has anyone managed to get a Roche test privately in the UK recently? I can't seem to find one anywhere (I am near Manchester).

Here's the main/newest T-Cell study @longshot
www.sciencedirect.com/science/article/pii/S0092867420306103?fbclid=IwAR2CPPbVhSH6nuOIdUwdawauqG098iwksMmG-_JWitRW5MmN6Mz1-77JaNs
An article on it
www.sciencemag.org/news/2020/05/t-cells-found-covid-19-patients-bode-well-long-term-immunity
And a mini video summation
mobile.twitter.com/profkarolsikora/status/1263810622430511106?s=21&fbclid=IwAR0p_sKlAsNVv5luqx27sawUjx_kWhrp6yDSVGEnfs3i6m2xCp68oNep3WY

FYI, Sikora is a very controversial figure and has made a lot of statements that are very open to debate. His summation here of this study is basically accurate.

Hi longshot - you could try asking your GP to book you the venous test. They can now refer patients again (apparently the capacity to do this went down on their systems a week or so ago). My GP referred me for one late last week and I’m waiting for results now. As I’ve already tested negative on a home test though I’m not getting my hopes up...

Thank you so much for all the T Cell info and latest research articles everyone. This is really keeping me going as 3 months in I’m feeling very down with ‘where is the light at the end of the tunnel?’ thoughts. I’d love to hear any positive recovery stories and may join the Slack group just for those alone as like others, I’m finding it hard reading the Facebook group posts as they also make me anxious.

I hope you all have better days soon xx

Just reading about a drug-Remdesivir? Can something like this help long term sufferers?

This is also interesting on T Cell response

theconversation.com/coronavirus-how-t-cells-are-involved-and-what-it-might-mean-for-vaccine-development-140374

I thought all my bloods were back and clear but I've just had a late result. My ANA levels are 'weak positive' (I'm taking comfort in 'weak'!). This is a marker for autoimmune diseases. My GP is now thinking what I'm going through may be non-Covid related. I on the other hand am convinced that the Covid has triggered this and raised my ANA levels. It doesn't make any difference either way though - I'm just waiting to hear back as to what further blood tests I need.

@fedupofbed would that show up for the coeliacs?

I don't think so @godhelpusall but I need to do more research.

@fedupofbed vision issues, yes- more floaters in my eyes, definitely.

@alittleprivacy I had a positive antibody result yesterday. It's been a roller-coaster of emotions since.

Anyone heard from. #worrisomedad, #rosesofyarn? I'm. Trying to think of others who were longer-timers, too.

The uk group on slack are planning something to raise profile of us long tailers- everyone sending a message to Boris Johnson in a bottle. When I find out more I'll let you know.

@isitorisntit casino?

@isitorisntit rosesofeyam was on here yesterday I think if that’s who you mean.

@godhelpusall I can do a quick update. 14 weeks for me tomorrow. I’m ok. For the last few weeks I’ve been consistently improving but I wouldn’t say I am recovered. I don’t have any virus symptoms anymore (currently!!) but have what I would say are post viral fatigue symptoms (I think).

Since about week 11 I’ve been very fatigued. Each day I get a bit better but some days still feel bad. These days are less and less.

Remaining symptoms are:

Tiredness on and off
Back ache (not frequent)
SOB if I walk up and down stairs several times (more than usual but not extreme)
Headaches / eye ache if I spend a lot of time at a screen.
Some costochondritis pain still but much less

My energy is gradually increasing. At one point I needed 3 x meditation sessions and 1 nap every day just to cope. Now I often remind myself to stop and do those things. I’m still taking it easy though.

I walk between 20-40 mins a day (gentle) and I do yoga and just started some Pilates this week. That’s all I do. If I do more I think I’ll go downhill. I work a bit and look after my kids and do house stuff fine but sometimes need to rest still between things.

Most days I feel ok now but sometimes in the evening I get a sore throat which reminds me not to overdo it!

@TheWooisStrong how are you doing now? I know I last week you said you felt bad again.