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.

@TiddleTaddleTat thanks that's very useful as I've been considering seeing a naturopath. I'm now wondering if my awful insomnia is being caused by taking B12 supplements so it would be good to get some help with this.

Glad it went well @TiddleTaddleTat . All sounds very interesting, especially the blood sugar levels and the vitamin D - I've cut down to half that but think will increase again, especially with winter on the way. I'm still taking a high dose vitamin C.

Also pleased the phernargan worked. I haven't bought any yet. I have started my B12 patches though. I'm going to stagger starting everything as it's all too much at the same time.

I've had another uneventful day... which is good I guess!

Hi @Norugratsatall I cross posted. Oh gosh I hope the B12 I've just started doesn't affect my sleep!

@fedupofbed I didn't mean to worry you, I'm sure it won't! A quick google doesn't bring anything up but it does if you dig a little deeper. Someone on the Fb group mentioned it as it had helped his brain fog but given him insomnia and my ears pricked up! I don't eat meat and very little dairy so I thought I'd start taking it to improve brain fog and tinnitus. I've noticed improvement in brain fog (but it's not helped tinnitus!). It's just something to consider. This is why I feel I need to see a naturopath or a nutritionist.

Hi there

Good discussion on nutrition. I've definitely got low Iron, even though I have been taking supplements. I hadn't been taking a lot of dairy till recently, but definitely feeling the benefit of upping this. Need meat now. Also, craving sugar like hell, and artificial sweetener makes me fizz...(common with nerve pain).

Was at my GPs yesterday. What a change in him!! He had photocopied an article for me about dysfunctional breathing and the diaphram. He was totally "on it" when it came to Long Covid! He was honest, still on the "we don't know", but asked me to try antihistamines for my hands, prescribed a huge tub of menthol gel, and insisted I still see the Infectious Diseases crew, because they will be "up" on the latest thinking!

He also referred my for a chest xray. I have a wee lump on my collarbone. Probably either calcification or a lymphnode, but he's become uber cautious with me. I'll take it...

Wow that's a real turnaround from your GP @AndsLee ! I remember how dismissive you said he was in the earlier days.

@Norugratsatall it didn't, phew. I actually slept a bit better than usual last night. I'm now using a weighted blanket but it's too early to tell if it's having a big effect. I do like the feeling of it though.

@fedupofbed I know, right?? He acknowledged I'd been through a "very difficult time", and reassured me that other viruses has this "bouncing ball" effect...as in it ups and downs, decreasing each bout of symptoms.

Interestingly, my "reoccuring bruise' has appeared in my knee again. I did wonder if I was having another cycle, with symptoms in minature. The reoccuring bruise is the end of my cycle (as is bleeding gums), so I am thinking another couple of 8 week cycles and the ball will stop bouncing.

@fedupofbed 👍 that's good news! I had a better night too, I felt a much less Covid presence than I had earlier this week (if that makes sense). So hoping the insomnia was just plain old Covid friend and not B12 related. I have been considering a weighted blanket too so so let us know how it helps you, if indeed It does.

@AndsLee glad your GP is finally onboard! Prob not before time. I've thought about approaching mine again for some help and support but getting passed the receptionist when you mention the C word, is a battle I can well do without atm. I may write a letter detailing my Covid timeline then I can make sure ive not left anything out and it's free from emotional outbursts. 😂

Hope everyone has a good day, at least the sun is shining (here at least!)

Does anyone else have a variable resting heart rate? Mine goes up and down like a yo-yo. I will try to post a pic of my Fitbit for the last three months

Sorry to have disappeared just lately and apologies to anyone I didn’t reply to!

Had my rheumatology appt and my c4 was low which points to possible autoimmune issues, but ANA fine. Will have retest. She is also worried about my fluctuating calcium especially given my symptoms. I have to stop supplements for 2 weeks and then have a another blood test, after that possibly go to endocrinology. She felt the picture was odd, overall.
GP has referred me for an echocardiogram which I’ll have Wed.
Feeling overwhelmed by there being something that is not quite right, I sort of didn’t expect it!

@Criticallythinking I'm sorry about all the uncertainty and really hope they get to the bottom of things 💐. It sounds like they're being very thorough which is good. I hope you're feeling okay in yourself at the moment?

@LetsBeSensible my heart rate has been low a lot of the time but with lots of spikes so balancing the two extremes my 3 month chart probably looks 'healthy'. Fluctuations are between 60 and 66 each week.

I've had a bit of a wobbly day today. I walked up the road for the first time, 2 minutes there and 2 minutes back, which is a HUGE milestone for me. When I got back I felt quite ill and dizzy though and then I got frustrated again about how little I can do. As ever I just need to focus on how much I've improved, and live in the present, rather than constantly dwelling in the past or worrying about the future.

@AndsLee Rubbish news about the negative antibodies result. Please may I ask how you got the test?
@Porcupineinwaiting How did you get hold of the recovery clinic? Were you referred?

Yes I was referred by my GP. I had blood taken for an antibody test today, ordered by the consultant. Apparently our NHS Trust has recently relaxed its rules to allow this to happen.

Am dreading (but fully ecpecting) to be told no antibodies. My symptoms are v similar to AndsLee and I never lost taste/smell which seems to go with making them too.

@Criticallythinking what's c4?

Ds has had another appointment with the doctor today, had what we think was covid in March but at the time no tests for U18. He went back to school two weeks ago & has been shattered by hometime, doctor has requested a full range of bloods again & referred ds to covid recovery programme. Anyone wondering about B12 deficiency, I have it & symptoms can include fatigue, eye problems, incontinence, neurological symptoms like numbness & tingling, tinnitus, back pain, memory problems, dry mouth, sore swollen tongue, sores in corners of mouth, even dementia. If you have any thoughts of this, head over to B12 support pages on Facebook, we are all a friendly bunch & can advise you how to approach your doctor, on supplements or how to obtain B12 injections for self injecting.

@Porcupineinwaiting it’s complement 4 which is something to do with the immune system... if it’s low it can mean lupus but I don’t really have a lupus type presentation. Also had c3 measured and that was borderline.

Explains here www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=167&contentid=complement_c4_blood

Hello hope it’s ok to rejoin.. sorry to see so many people still struggling. I was on this thread several threads ago. Had symptoms from end March for around three months which gradually subsided but the neuro ones never totally disappeared.
Original symptoms have been been back for two weeks, no tests available now. I am wondering it’s a reinfection as there is nothing I can think of that I might have done (like anymajor exertion) to trigger a major relapse. It would fit with the immunity period probably being quite short. Wishing everyone a swift as possible resolution for their symptoms.

@fedupofbed sorry to hear you've not had a good day! I think it is entirely natural for you to be upset and frustrated when you can't do things you did so easily before. It's hard to always focus on 'how far we've come', sometimes we need to be able to mourn our old lives at the same time as realising the progress we've made. I hope you have a better day tomorrow. 💐

@Fishflakes There are quite a few confirmed cases if reinfection coming up on the COVID Facebook group I'm on (all in the US). Can I ask if your symptoms are identical this time, and as severe? And have your neurological symptoms got worse again?

@Fishflakes oh no so sorry to hear that you may have been reinfected , indeed I am hearing that it is possible. This really worries me as I'm still only about 20-30% of my Pre-covid health. DD is at school, no SD, big classes etc so... I do feel vulnerable. I'm also concerned about DH catching it as he is keeping us all together at the moment.

Hope everyone can have a calm and restful weekend. I'm going to do some little craft projects with DD and try and stick some beef in the slow cooker to get us through a few meals. I'm trying to prioritise my energy, when I have it, towards food prep to help through the tougher times.

Ordered a ton of new supplements yesterday following naturopath recommendation, mostly what I was already taking at higher/purer concentrations but also some things to help digestion, iron, and bovine colostrum (!!) which is apparently very good for healing the gut (which determines our immune strength).

Another good nights sleep with the phenargan, full 9 hours. Definitely notified the difference in mood and energy yesterday, though I don't want to use it longer than necessary. Right now feels pretty vital.

@LetsBeSensible interesting graph on resting heart rate. Have there been any lifestyle explanations for why it might have increased? Increased stress, poorer sleep? I would probably mention that to my GP.

@Criticallythinking
I mentioned low C3 and C4 T-cell counts months ago to my GP, and of course was "poohooed". I am not surprised and have suspected something like this. The good news is acquired, acute deficiencies I believe can be treated. How we access that treatment, of course, is another thing. It's plasma.

@moodgie My consultant ordered the antibody test. How are you doing?

Someone had mentioned about a link between loss of taste and smell and antibody production. I lost my taste and smell, negative antibodies. But then we are months down the line...

I thought I might have lost my taste and smell again yesterday, so I did the ultimate taste test...ate a bag of Revels. All was well...

Hi Porcupine. Yes symptoms the same and as severe and yes still neurological symptoms in the mix- headache and body muscle aches, aching eyes and wet eyes in the morning, neck glands up and painful, earache, throat pain comes and goes, smell and taste affected, ongoing exhaustion. Formication occasionally and always in same small place on scalp. Also mild shortness of breath on any exertion (like making conversation or walking to another room) or racing heart and faintness on standing up, 24/7 tinnitus, insomnia, mild reflux, occasional wincingly sharp nerve pricking anwhere in torso, feet and hands have less aggressive pins and needles. A wierd COVID symptom for me is end of the toes pricking (where you would go en pointe as a ballerina). I’d never felt those nerves before this.

But also the non linear progress of it feels exactly the same- getting better then worse but worse than the initial time.. my employer and family don’t seem to have their head around it at all which I can understand. it’s difficult because everyone around you wants to hear that you’re ‘getting better’.

I have had no cough and only rarely high fevers at any time since March. Mostly temp high to mid 37s for months but rarely up to 38+.

This last fortnight I have had more consistent nausea night and day and the night and day headache is focused on the opposite side of head/eye socket than last time.

My GP said long term COVID people are reporting recurrent symptoms which could be either a COVID reinfection, relapse of previous or another virus or illness entirely, they can’t tell yet. We have had a total breakdown in availability of testing in many parts of UK though so my guess is we’re unable to know what’s happening reliably at population level.

GP did say that if it is reinfection that it shouldn’t be assumed it would last as long as first infection did, which was something I was concerned about. Though they couldn’t rule it out. My big tip is that any kind of stress or exertion makes it all much more painful and exhausting but obviously these things are hard to avoid.

Hi TiddleTaddle. So sorry you’ve been under par for so long. It’s grim. I’m in same boat. DC back at primary, distancing is a joke. DC also ill in same way though more focused on tummy ache and feeling sick but with headache coming in and out. Exhausted on exercise of any kind. DH fine. So my theory is a genetic susceptibility that we both share or an immune system difference within our household. Makes sense to think about gut issues I will try to take some action there.

Very frustrating not to be able to access antigen tests to know what is happening with any of us in the household. My personal theory, based on no expertise and no antigen testing being available within first 5 days in March (nor available now), is that it’s either a COVID relapse brought on by increased viral load coming from school attendance, or as the start of illness coincided with the return to school, its a new COVID infection because (maybe for some people) immunity only lasts about 3-4 months.

My DC appear brighter now and with no more fever level temps but it’s been over two weeks and still eating very little and complaining of aches and exhaustion so I am hesitant about sending them back, even though the exclusion time has now elapsed.

Hi everyone. Sorry to hear some of you are still struggling. I have caught the most horrible cold. Sore throat, very achey, cough. My children have had it and I was hoping I would avoid it but no such luck. It's making my chest pain reappear 😩