Covid Lungs week 8 plus plus

[AndsLee]

Hope this has worked... Welcome all.

@godhelpusall Sorry about the return of your symptoms. Sore throats seem to be such a persistent issue.

I’ll happily help with any research if needed. I’m 12 weeks in with a plethora of issues.

@LarkDescending I'm sorry for all that you've been through and hope that you're being successfully treated now.

@godhelpusall sorry you're feeling rough again and thank you very much for all the useful information. I'd be up for taking part in research. Re your neuroscientist contact, I would definitely like to hear his take on all this, and what he thinks of the theory that this all relates to our autonomic system? I'm happy to do the photo thing too.

@Norugratsatall I wrote to my MP a couple of weeks ago. I was heartened to receive a personal response the next day saying he had written to Matt Hancock with my email and would get back in touch when he heard back. Since then, unsurprisingly, nothing! Think I will chase early next week.

Thank just found this on a Facebook page and thought it was interesting re defining a new illness, Post-Covid Syndrome.

www.bbc.co.uk/news/uk-england-south-yorkshire-53084368

And finally, in my ever expanding quest/desperation to heal myself I'm now trying acupuncture - I've got an initial video consultation on Monday.

News
www.bbc.co.uk/news/uk-england-south-yorkshire-53084368

@fedupofbed snap!

@sotiredzzz no worries! For what it’s worth in your shoes I’d get tested (the sternum pain is quite characteristic of covid imo). Bear in mind that the swab tests miss around 30% of positive cases. Good luck and get well soon.

@godhelpusall oh sorry... I thought it was 5% hence why the Facebook group was called 1 in 20. Possibly that's been revised now due to more people coming forward.

@fedupofbed not surprised tbh that you didn't get a response from your MP. I don't hold out a lot of hope from mine....but I guess the more of us that do it, then it can only be a force for good in raising awareness.

@godhelpusall so sorry about your relapse. Happy to help with research.

@LarkDescending that sounds terrifying. Wishing you a good and full recovery.

Day 90/91 for me and I’m not too bad. Resting heart rate 84 and chest and breast pain have reduced. Working all day but hoping to fit in a 5000 step walk. Another exercise class tomorrow (hard core but I will just step through most of it). Hope everyone has as good a day as they can. I am trying to believe that I am recovering!

@LarkDescending I'm so sorry to hear this but glad they caught it! What a worry for you! 💐

I'm concerned now as I e had continuous stabbing chest pain for months now on the right side. But had an X-ray on 19 May which showed nothing but pleurisy. The pleurisy has not gone, would an X-ray pick up a potential PE do you think?

Thanks for the link @LetsBeSensible and @fedupofbed.

@LarkDescending, can I ask how they found the clots please? I've had two X-Rays now which were clear but still have the terrible searing back pains. My GP said the chest X-ray would have picked up pneumonia, pleural effusion etc but I'm not so sure. Did you have a CT scan?

Great minds @LetsBeSensible !

Glad you're still improving @Egghead68

@Egghead68, you sound like you've recovered really well - hope it goes completely soon but try not to overdo it!

@Norugratsatall

I think an chest X-ray can indicate different problems which can point to a clot being likely, but to confirm it I think a CT scan with imaging is required.

@godhelpusall, can you please ask the neurologist what the pathway is medically to start getting assessed for neurological issues? So do you need specific blood tests first or a straight referral for a consultation based on symptoms? Thanks and I'd be happy to take part in any research too.

@Egghead68 5000 steps, wow! I can on,y dream of doing that atm. So pleased for you; hope your recovery continues without relapse. But yes, be careful not to overdo things.... 💐

Thanks @MillStone. I think I'm going to have to hope that they didn't miss anything at my X-ray a month ago. I can feel an anxiety spike coming on..... 😬

@godhelpusall - thanks for all you are doing. Sorry to hear you are feeling less well, I hope you bounce back quickly. I would be interesting in taking part in the research.

@Egghead68 - it is great to hear you are doing well. Hopefully you are on a permanent upward trajectory now. Just a slight word of caution that i felt a bit brighter before hitting a dip around 12-13 weeks. Take things gently.

@Lightsabre, @Norugratsatall and @monty6 thank you very much for your sensible notes of caution. I agree and am trying to be very careful to fight my natural urges to overdo it and instead to pace myself and keep my heart rate below 110. I don’t think I’ll feel fully confident I’m recovering until 1-2 months with no relapse.

Re referrals to neurology - your GP makes the referral. Unfortunately the waits for NHS neurology are very long in many areas.

@Egghead68 so good to hear that you are seeing progress, agree that 1-2 months symptom free looks like a good marker with what we know so far.

I felt relatively ok this morning - almost normal, but then SOB, breastbone ache, feeling hot and headache returned around midday so have tried to rest more.

Have noticed that my heart rate appears to be less variable now than a couple of weeks ago - am not spiking up to 130bpm through minor exertion any more, although may be a bit early to say, I'm hopeful that this indicates progress. Anyone else noticed anything similar?

Wish I'd bought my fitness tracker sooner, have only had it a couple of weeks but all the data appeals to my inner nerd

Hi all. A different neuroscientist got back today with his take on this.

Dear Frances
I am happy for this reply to be posted if it Is helpful. First of all, I am not a clinician nor a virologist so I would hope that people will take my replies with a pinch of salt. I have been reading much of the lieterature on COVID both in the newspapers and in the major medical journals and we are starting a research project on the human genetics of covid infection and response (details at the end).

I think you are right and it is clear that many people have unusual and longlasting symptoms of and after covid infection. I think it is clear that the infection induces and autoimmune response in those infected and this autoimmunity persists after the virus is “defeated”. A clue to this is the few children who get a serious effect of the disease get a sydrome called Kawasaki disease
https://en.wikipedia.org/wiki/Kawasaki_diseasee_
Which is almost certainly an autoimmune vasculitis. Vasculitis means an attack on the tissues of the blood vessels. And this perhaps partly explains why the symptoms are so variable: all your tissues have blood vessels. There are other weird versions of the disease too which are like chilblains
https://www.practiceupdate.com/content/chilblain-like-lesions-on-feet-and-hands-during-the-covid-19-pandemic/997722_
These are swellings of the blood vessels in the feet…..

So I think the variability in the disease in part depends on which blood vessels are being attacked by your own immune system after the virus has been defeated (or at least during that fight between the virus and your immune system).

Why does this happen? That is not known, but to get into your body the virus binds to a protein called ACE2 and this protein pulls the virus into your cells. ACE2 helps control blood pressure and is found in your blood vessels and that might be the reason. I also think it is possible that your route of infection influences your symptoms… lungs..breathed in…. mouth/nose… smell and taste… gut…in your food etc. This is not known, this is just my opinion.

Of note, the just announced drug for covid treatment, dexamethasone is a powerful immune suppressant so its welcome success in reducing mortality fits with these ideas.

We are part of a UK wide stdy to try and understand the human genetics of the disease… why do some catch it and some not and why do some do badly and others recover quickly and completely. The more people we recruit the more complete will our picture be. This is the registration form

https://register.genomicsengland.co.uk/s/covid-19-registrationn_

We will beat this disease!!

I hope this email is helpful and if it is useful I can forward good articles to you for your group

Also can you do the link to research at the bottom

@godhelpusall thanks for that info and link. Registered!

@TiddleTaddleTat yes I’ve noticed my heart has been changing in the past 2 weeks. My main issues are a pounding and erratic heart rate. Both seem to be improving. The pounding and racing is now less and less throughout the day but my heart rate is still all over the place — 46 as I type this. It does still race when i stand or eat but normally only in the first half of the day.

@TiddleTaddleTat good news about your heart rate.

@godhelpusall thanks I’ve registered!
I like the theory that the “way in” reflects the initial problem I.e. mouth=gut, loss of smell, breath=chest, cough. I’m not sue I agree, but I like it. I have a friend who knows someone else who had it who totally lost their smell and taste, apparently they were able to cover their tongue in chilli and not feel anything (and I didn’t so therefore I might not have had actual covid)

I’m wondering if I have long tail covid too. I had a virus (untested) mid January - tickly very sore inflamed throat which caused endless coughing fits, extremely painful neck, shoulders and windpipe, wheezy sound when breathing, acid reflux, mouth ulcer, brain fog and headache - I was basically a walking virus. Woke up day 8 and couldn’t breathe - just like someone had removed my lungs and there was nowhere to breathe any air into.

Took nearly 2 months to slowly resolve, but I keep getting recurring flare ups of these symptoms. Knackered today - head fog, throat inflamed and keeps making me cough (can’t laugh etc it will set me off). Anyone know if a swab test would show any viral infection 5 months after original infection?

I don’t even know if it was covid! It was just, odd. Like a bad cold with lots of added symptoms typically unrelated to colds.

@Kat101 that sounds very like what many of us have had.