Post Covid infection - nearly 4 weeks since positive test and treated with antivirals - have ET and still feel awful

[BeckyDing]

Hi

I tested positive with covid 4 weeks ago and was prescribed antivirals as I have ET. I tested positive for 6 days only and after 10 days felt loads better - however on day 19 i ended up in a and e with a suspected heart arithymia and body going into shock, I couldn’t walk or stand, couldn’t eat, my muscles were in spasm continuously and heart racing, this calmed eventually after 12 hours and was sent home being told bloods and ECG ok and that covid was still acute in my system and to rest. Since then I ache all the time, muscles still twitching and sore on and off and stomach really sore. I ended up in and e again last Wednesday night and now waiting to see Gp - I was wondering if anyone had relapsed after covid and had similar symptoms, I have been told it’s covid related and possibly going back in interferon too quickly after diagnosis caused the relapse but they don’t know - if anyone has had any similar experiences and how was treated after to help would be much appreciated or whether this is the start of long covid! I have been jabbed 5 times and it’s finally got me!

[EPguy]

Your symptoms do match long covid. I've had it since early 2020 including some of what you describe, but it has improved slowly. But a minimum time of 12 weeks is often used to call it long covid so yours would still fit the "acute" description your Dr used.

Are you still testing positive?

The current vaxes are quite limited for preventing infection with ba.5 covid, and the benefit of many extra boosters is still debated. Also the vax benefit preventing long covid is not clear. But vaxes still much reduce odds of the worst outcomes.

With the latest variants it's also possible to get another infection not long after a 1st one.

Did you stop the INF at Covid Dx? If so did Dr give you a reason to stop the INF?

[BeckyDing in reply to EPguy]

I am sorry to hear you have long covid? What treatment are they giving you to help? Yes my consultant told me to stop my medication until I felt better but keep taking my aspirin - weirdly my platelets went down to normal range on last platelet check a week ago through all of this - was 527 and then 399 a week later - it’s all so strange but when I lie down I am more in comfy than sitting so hard to rest and go to sleep without waking up aching and shaking

[EPguy in reply to BeckyDing]

Both me and my husband have it, but when it was really bad (1st half of 2020) they knew nothing about it and it was often even denied as a real thing. So we didn't get any treatment. Even today they can only treat the symptoms since they don't know what causes it. Hubby near died from suffocation during the acute phase and still gets throat trouble. Good news is with vaxes and prior infections that really bad outcome is now quite rare.

I still get lung area spasms in the middle of the night occasionally, seems similar to yours. There's another rare long covid symptom, feels like a phone vibrating in the chest. I had that occasionally for a while.

I've not found reports suggesting INF is a covid hazard, if fact it may be helpful. Our bodies make INF during infection and having a head start may be helpful to prevent overdoing it according to some of the reports, mostly from 2021 (but all is uncertain as usual). If your Dr has info on this it would be great to know.

Interesting on the lie down, hubby had to sit bent over to breathe, it seems your lungs are ok?

PLT levels and shapes are associated with covid severity in some reports, but I can't find clear answers. But with MPN, who knows if that's relevant since our PLT are messed already.

[BeckyDing in reply to EPguy]

My lungs do seem fine and not had any issues with breathing - it seems to have effected my joints really and muscles, mainly my legs and lower back and my tummy feels so bloated and sore - we caught it coming back from holiday where I felt the best I have done in years! When I lie down backs of my legs feel so sore and so does my left side around the front of my ribs, legs feel pins and needles and shakey - hoping GP can give me some advice and medication to help with that - I’m concerned covid has triggered something auto immune as have friends where this is the case, one who now has pernicious anemia and under active thyroid, another who is now coeliac with no issues before - can’t believe society are now playing it down so much when this is gonna cost the NHS billions never mind whether people can continue to work - I’m managing part time at the mo but it’s not sustainable in the job I do

I’m speaking to my consultant next Thursday also so will see what they say and how my bloods are doing

[Whitehair51 in reply to BeckyDing]

Your symptoms are interesting. I think I got Covid last month but didn't have a fever or respiratory symptoms. Also, I did one at home Covid test that was negative. But I was very fatigued, had the chills, diarrhea and had major brain fog. It eased up after about 10 days then I had headaches, sore glands in my throat and horrible pain in my joints and muscles in my legs! That lasted about another 10 days and slowly eased. I was on acetaminophen for the leg pains and needed to use ice packs. I saw my primary care doctor 2 weeks later and she said I could have had Covid. I have been vaccinated and twice boosted. I have ET with Calr, diagnosed 2 years ago and am 71 years old. I wondered too if I had an immune reaction.

[BeckyDing in reply to Whitehair51]

This sounds exactly like what has happened to me especially the muscle and joint pains - I feel like my body just overloaded! I didn’t have any respiratory symptoms at all and only tested as had a slight sore throat and husband had tested positive and he had every symptom in the list - he still is coughing and having to use inhaler but is back bike riding again - I am on day 10 after I was in hospital and think i am slowly turning a corner as had a little walk today - felt sore but not as bad! I’m having blood check tomorrow and also talking to gp so will see what they say

[Emmyroos]

That sounds horrible. I'm so sorry you're going through this!! I had covid a few weeks ago and took antivirals (paxlovid) and continued pegasys throughout. I hope they find the cause and an effective treatment for you. Wishing you a speedy and complete recovery!

[ainslie]

Sorry to hear you are suffering, can I ask you which antiviral you had, I have read a few times that with Paxlovid there can be some rebound of Covid.It does seem that the current vaccines are not so good for BA5. I was hoping by now that we would have a better vaccine and some sort of prevention antivirals for us at greater risk. I hope you are feeling better soon.

[BeckyDing in reply to ainslie]

Yes it was Paxlovid I’m afraid - I had 4 Pfizer’s with no infection and then 5th Moderna and caught it off my husband - he had his booster last November and not offered anything since which I think is another problem that should be resolved but yes I do agree on that they need to be sending our better boosters with the BA variants as well as better treatments - I do wonder as most governments just want to now brush it under the carpet are not putting in as much funding

[EPguy in reply to BeckyDing]

I've read that long covid can occur in up to 30% of cases. And a recent study of US veterans says each infection increases odds of getting long covid. We do need better vaxes, and many very good ones are under study. Here is a sample of a very promising one with a high quality study that worked on all the bad coronaviruses :

caltech.edu/about/news/sars...

In the US politics is inhibiting the sort funding that we saw for the 1st generation of vaxes. While such a rush does have waste, we likely could see these new ones within a year if it happened.

[BeckyDing in reply to EPguy]

This definitely brings hope! They really need to get these through as if this strain is considered mild I’m dreading it if a worse one hits again! Take care

[Wyebird]

Oh Becky so sorry to hear you are still suffering. I took Peg on day 3 of having covid. Only had 2 jabs at that point.We are all so different. All I can say is how ill would you have been without your jabs and antivirals.

I hope you get answers soon. Wishing you a speedy recovery.

[BeckyDing in reply to Wyebird]

Hi Yes no idea what would have happened without vaccines and anti virals but at the same time unfortunately there still isn’t enough info given out in relation to looking after yourself when you have covid - I had no idea after negative tests that covid could be still active in your system for up to 8 weeks and also that you shouldn’t see immuncompromised people for that time even though I was then told I shouldn’t be infectious? and that if you felt better it may not end there, if I knew that I probably wouldn’t have gone back to norm with kids, gone back to gym, done 5k walks etc and taken it more steady - my gp has done a load more blood tests which a and e didn’t look at to the horror of my GP, I feel slightly let down by my consultant who hasn’t seen me face to face for over 2 years and literally said well let’s hope your better before 8 weeks and don’t start your Pegasys again until you do start feeling better? and just find the whole process really disjointed. - the fact you can’t go to a covid clinic for advice until after 12 weeks just seems insane - my gp is looking after me now so fingers crossed we get somewhere and get some answers but unfortunately I know too many people without poor health that has long covid or now an auto immune disorder as a result and just think we need to be putting more money into research and resources - I defo think the vaccines helped to start with but now so many people vulnerable to this variant as the vaccines do not stop you catching this and we need to buy the ones that are tailored like the US are doing - I’ve taken my kids for their first jabs for example and just don’t see the point In taking for second jab - they both have had covid and been fine and really they wanted the jab to protect me - it’s tricky and I’m just very frustrated and upset at the moment.

I went for a hot stone massage which has really helped my muscle pain but weakness and dizziness still really bad

Thank you for the best wishes

[Wyebird in reply to BeckyDing]

On the news it actually talked about people having anti viral then testing positive after a negative. President Biden is going through it now but unlike you he is asymptomatic . Look after yourself x

[EPguy in reply to Wyebird]

The current thought on the rebound post Paxlovid is the dose needs to be higher or for longer. But 1st they will need to do the studies, so no fix right away on that.

[Wyebird in reply to EPguy]

Yes that’s exactly what was said on the news.

[EPguy in reply to BeckyDing]

I agree, I'm awaiting the new vaxes supposed to be in US by Sept. But they say it's still worth getting the 1st three of the old ones, esp if no prior infection. It's the 4th that seems unsure whether it's helpful. My MPN specialist agreed I should wait on the 4th.

[mhos61]

Becky, how awful for you; I really hope that you’re symptoms soon subside, and there is no long term issues.Xx