Covid Lungs week 8 plus plus

[AndsLee]

Hope this has worked... Welcome all.

@LetsBeSensible

Thanks for the pdf, the out of breath scale is very interesting and useful

Had anyone with long standing symptoms tested positive recently for covid? I was really ill in March. I have tested negative for antibodies. I still have a cough and chest burning and pain. The cough is productive. Another family member has similar symptoms. I am starting to wonder if the reason we are still ill is because we still have it.

I think one or two people have had positive antibody tests @grapefruitsarenottheonlyfruit and a GP did a rough audit and found about 20% antibody tests in long-haulers were positive. It may be that we just don’t mount a good antibody response.

I suppose I was wondering more if people had had positive covid tests who were testing negative for the antibodies.

I was wondering whether to get myself tested for covid itself to rule out still having it.

Sorry - misread. I can’t think of anyone on here who has had a positive swab test recently. No harm in having one if you want one though.

Thank you @godhelpusall I will use it. I am getting very angry with it all. I spoke to my GP on Friday as am still waiting for my appointment for a chest xray. I have been ill since March 14th. My main symptoms are chest pains and shortness of breath. I have only spoken to her 3 times in this whole time and have seen no one face to face regarding health care. She was so dismissive. I told her I was uncomfortable about the fact that I have only been diagnosed over the phone and had no tests or xray to confirm I am OK. She laughed at me saying well I'm sure you don't have a tumor. I was made to feel like a hypochondriac for calling the doctor for the third time in over 3 months. Sorry to rant but it's soul destroying being so incapacitated for so long.

Hey all it's not my letter!!

It's an ICU consultant

He wrote it to Natalie Bennett

But wants people to use it

Sorry, I thought I'd made it clear - doh!

https://lookaside.fbsbx.com/file/Long-term%20COVID%20Letter%20to%20Baroness%20Bennett.pdf?token=AWwJVoDh807Dhq6mgqRk27mOhyKyEuiQTZ0YsD8i4V1tbsXJ7AwU77jr-EANzMzXQjdyx7L42rFIMgI62SayJFsvOLXw4K78-N77FWaGSHUufAfpp41C7tnHr5Hz0fxh5G7KV9jHPIRsiC0LnJ589ibVpPkvT-AhRr7qG4KtYoBu8zjLGgGgCkwEiyCqyBfEzwE7iqiBeZfg2GDRfKl7QJNH7fQSM4X-vZe34TsYHRJA

@Egghead68 @MillStone @Countingsheeps can I check you haven't falsely attributed the letter to me? 🤨

@godhelpusall thank you ! That's awesome. I will send my own story to my MP and link to that fantastic letter.

Does anyone else have 'patterns' of symptoms? I'm noticing I have a breathlessness/dry cough/chest pain and clearing throat pattern and then something that feels different with overwhelming fatigue/racing heart/temperature spikes

@Lightsabre @TiddleTaddleTat @fedupofbed just checking you attribute the letter to the ICU doctor who wrote it. Not me!

I think it has more weight being from an icu doctor

@godhelpusall hehe sorry, thought you wrote it. I haven’t passed it on or attributed you

I was expecting you to get a lot of medical questions though!

Thank you for the link to the genomics study. I signed up a couple of weeks I think but not heard yet if I am accepted. Anyone else hear from them yet?

I noticed the questionnaire is not really tailored to long term relapsers, especially those of us who are not currently ill at the time of completion or who have had negative antigen tests and have no access to antibody tests. So I am a bit worried they’ll find our screening survey answers nonsense and not want to include us.

I would like to also like to know in the case of bat populations who are constantly circulating coronavirus repeatedly how they don’t all just die. If I do any exertion at all I am back to bed for 3-5 days with the full suite of symptoms again. In the wild, when you have to catch your own food to survive , what happens if individual animals are getting sick regularly? Do the ill ones get food and childcare off the other bats? I just don’t understand how not getting immunity to a virus can be sustainable with life lived in nature.

@godhelpusall no I was just thanking you for posting. You said it was from an ICU doctor. Thanks again - it’s good to have as a template for our own letters.

@fishflakes there was a really interesting TV programme about why bats don’t die of coronavirus. I really wish I could remember the details but basically as they are the only (?) mammals that fly they have hugely fast metabolisms and somehow that protects them.

This isn’t the same bat programme I heard but still has a bit of info:

www.bbc.co.uk/sounds/play/p08635vb

@godhelpusall ha I thought it was you too 🙊

@TiddleTaddleTat yes I have patterns of symptoms too. I have blocks of time that alternate between racing heart, SOB and 'fight or flight' sensation on a daily basis. When I'm not SOB I often have a burning sensation when I breathe in and a numb tingling face. When these symptoms subside (had them for about 8 days last time) I start to feel better in myself but then it seems to move to my throat and neck area - it feels very tight, swollen and constricted. It then moves to my oesophagus, with a sensation of blockage/ trapped wind. Rinse and repeat.

@GrapefruitsAreNotTheOnlyFruit since you still have a productive cough it may be interesting to get a swab done - let us know!

@Kitcat122 that's awful - I'm so sorry, it just adds to the stress 💐

Thank you Egg