Long Covid

Has anyone any experience of Long Covid. A couple of weeks ago my husband who has Acute Lymphoblastic Leukaemia tested postive for Covid, after a few stressful days he was assessed and was treated with an antiviral infusion. He felt fine and after two days tested negative and we thought he was recovering. He was been in remission for months and was supposed to start the maintenance stage of his treatment but due to his low blood counts they are delaying it and want him to fully recover from Covid
But in the last few days he seems to have gone downhill, he sleeps all the time and and has no energy, he complains about “brain fog” he can’t concentrate on anything and joint pain. He thinks he has sinusitis he has pain in face and feels bunged up.
I think reading about Long Covid he might have this, of course at the back of my mind I am thinking he is having a a relapse of the Leukaemia.

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It’s sounds as though it could definitely be a something to consider but I don’t know to much about long covid. Have you contacted the GP or his team? I know my friends husband was suffering from it and he was referred to a clinic which dealt with sufferers of long covid. Might me worth a try? X

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Hi yes spoke to his team this morning and feel a bit more reassured. They think it does sound like its still Covid, they said his last blood tests show still in remission so unlikely he has relapsed but they will do blood tests again on Friday if he is feeling no better. I have to keep looking out for a high temperature, difficulty breathing, severe headache and confusion.
She told me that tests for long covid are proving unreliable, and it doesn’t seem to matter if you have mild covid or are really ill. But they are seeing a lot more cases of potential long covid.

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I’m glad you feel reassured and that they are keeping an eye on him.I suppose its something they are still learning a lot about. Please keep us updated on how your husband (and you) are doing x

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Oh @summer123 thanks for your update, it sounds as if your GP is aware of your husbands medical history, symptoms and your husband will be having blood tests on Friday.
Please keep posting how your husband is and how the tests go.
Your husband is very lucky to have you.
Also look after yourself and yourselves.

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@summer123
Long Covid - is only a new label for something that’s been around a long time, it is post viral fatigue, and can also develop into ME, for some people (my brother included - he has markers for glandular fever, so it was probably that which set his off)

The main thing with this, is not to over do anything, just do things that they can do easily - don’t push anything at all.
There has been studies into it, and rest is the biggest help.

I struggled to talk at the beginning, when I had covid, I just couldn’t “catch” enough breath to say a sentence …which was a bit of a nuisance, as I had to keep phoning around the houses, chasing my antivirals … but I learned to take a slow breath, in the middle, and really take my time.
I had an oximeter, which is a good standby, as then you can see if it drops more than it should, and need to take action - luckily, mine stayed in the “safe” zone… which means you don’t worry unnecessarily

I hope your husband improves
take care both of you

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Hi @heatherthomas thank you. He is definitely not overdoing it, he sleeps all the time. His breathing is fine, he has an oximeter and readings always good. His brain fog is really bad, he sounds drunk all the time, slurring his words and struggling to string a sentence together. See how he is later in the week.

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Hi @summer123 your husband certainly sounds very poorly, perhaps get medical advice before the weekend when it is more difficult to get medical help.
Look after yourselves

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Sorry to hijack this but the sinusitis, the pain in the face is something ive had since december the month i caught covid all fatigue everything else was milder in the months following that so i am pretty certain its to do with covid, (in my case anyway) i could be wrong i will be able to tell you on the 11th of may when i meet with a specialist i had antibiotics for the brain fog and what i thought was sinus infection and it didnt go away for weeks after now its back again because i think we just had round 2 of covid.

@heatherthomas thank you for sheding light on this long covid thing i am defo hitting my dr with this one as my symptoms are picture perfect for this its even been known to raise ldh and drop red blood cells which i am currently being investigated for.

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Hi @summer123 I do hope your husband starts feeling better soon, it sounds as if the resting he’s doing will help him. I also hope that the blood tests give you both more information about whether it is long Covid which is causing his symptoms. Take care.

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@summer123
The brain fog does sound worrying, I hope the doctors can sort something out for your husband.

I love doing the number puzzles in the paper, but must admit, they were working out wrongly, and some just stumped me, when I wasn’t well, so although I didn’t feel too “foggy” I obviously was.

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Having had Covid at the start of February I slowly recovered. The headache and hand and leg tremors disappeared after a month and the chest pain a week or so later.
I then unfortunately had a strange turn in the night when my heart raced but mostly I felt like I had been punched in the chest and winded. When I got to hospital my lungs were clear but I showed atrial fibrillation. I await some heart checks at the hospital and the use of a seven day monitor but my GP sent me back to the hospital for blood clot checks ( thankfully clear). She is convinced that the AF is as a result of Covid as I had no problems before. Apparently antibodies can sit around in some organs and cause irritation following Covid. The amount that doctors have discovered and continue to discover is very heartening ( not meant to be a pun). I continue to be woken at night by my dancing heart but not every night and I have been somewhat reassured that it is not super dangerous but I still await an appointment.

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I’m sure you will feel better once it’s all been checked properly. I hope your appointment comes through soon. Please keep us updated on how you get on x

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Yes, @GrandmaJo I think you are so right the Doctors and scientists are learning so much about Covid and its side effects all the time.
I have atrial fibrillation and was given very little knowledge or tests on it apart from a 24 heart monitor and meds in 2010, which I still take and work fairly well, I have the odd ‘flutter’.
My husband was diagnosed with it last Oct and he has had far more tests, meds, information and monitoring.
Let us know how you get on and really look after yourself

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Thank you for your support. I am awaiting a seven day monitoring but at the same time my hospital is overrun with Covid so some delays. My GP is on my case.

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Update, Oh dear its now obvious all my husbands symptoms were nothing to do with Covid. Last week I was getting concerned with how my husband was rang 111 explained how he was next thing he was taken to hospital by ambulance.
He is still having tests but appears he has a brain lesion which is causing slurring of speech and weakness on left side. They are now investigating the cause of the lesion. He is on Haematology ward but under Neurology. I asked if Covid or the antivirals could cause this and they said no! Just hoping the cause is not the cancer in his brain.

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Hi @GrandmaJo I am glad that your GP is on your case
Look after yourself

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Hi @summer123 it must be a very anxious time for you both.
I have started to think that once you are actually in hospital the advantage is that the tests really kick in, but in hospital time.
Let’s hope the cause of your husbands lesion is quickly discovered and sorted.
Please do look after yourselves.

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I am so sorry this has happened, at least your husband is in the best place for investigation and treatment, I hope their is a good outcome for this

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I think I knew but the lesions on husbands brain is definitely the cancer. He is on high dose steroids which is reducing swelling and is helping. They sent him home last night which is nice and his team is having a case review tomorrow, they say radiation therapy may be an option but prognosis not good. We have to see his consultants later in the week.

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