I’m COVID positive (provided proof to MN) - AMA!

[RightYesButNo]

Hello! I’ve been diagnosed COVID positive. I had my first symptoms March 14th, was tested March 17th, and my doctor called my 12 hours later to tell me the news. My results were quick, as I have underlying conditions. I asked MN Headquarters if they thought this would be helpful. I’ve provided private medical proof to them and they’ll be along shortly to verify me.

Please feel free to ask me anything about: my symptoms, their progression, the testing, my symptoms post-positive result, how others around me are doing, how quarantine is going, how I expect quarantine to go, and anything else you’d like.

I’m living abroad in Switzerland, so I’m afraid I can’t answer specific questions about what the NHS is doing, and a doctor would be MUCH better qualified anyway, but MN Headquarters still thought this would be helpful, maybe.

Wanted to clear up the questions while I’m here.

@celebrityskin I’ve had mine on and off now for three weeks. But I’ve noticed that if your lungs are still clear, the hospital doesn’t worry. However, my doctor did when we were reaching the three-week mark. So I would say, if you’re still having a fever at three weeks, it’s time to talk to someone (non medical opinion based on my experience).

@VivaLeBeaver I was working on a project and trying to socially isolate the week before I was tested positive so we only saw one pair of couple-friends the weekend before, and they came into our house; I never went out. Once I developed symptoms, and then tested positive, they socially isolated together for 14 days, but they stayed negative.

It's good to hear from you RightYesButNo I'm sorry you've had a bad time of it. Thank you for updating.
What kind of myasthenia graves do you have and what treatment are you on? If you don't mind saying that is.

I’m glad to hear you are doing ok!! Please keep us posted and I’m curious too about the test tomorrow. Hopefully no more C19 for you!

Phew OP, you scared us there for a minute!! So glad to hear from you, though really sorry you've had a second wave. I wonder what the bloods will reveal? Please take care of yourself, and keep us posted.

So relieved to see you've come back to the thread OP, I was thinking about you this afternoon so v relieved to see you're ok (well, as ok as you can be given the circumstances)

Can I ask if you've experienced a metallic taste at all in the duration of your illness, or pain?

GL with the test tomorrow!

So relieved you came back to us, OP! I hope you have a speedy recovery now.

@PurpleBlueAnemone I have generalized myasthenia gravis. I started with ocular, progressed to generalized, and I’ve had a thymectomy for it. I’m now on Mestinon, prednisone, and subcutaneous immunoglobulin (the intravenous route gives me aseptic meningitis BUT I can testify that it did work for my myasthenia, besides the painful side effects).

@Pickles89 Sorry about that! I’ll update today with a brief view of what we expect to find out from the “bloods,” as my GP wasn’t too clear on the phone (he sounded a bit stressed; can’t imagine why). Then update briefly once we have the result.

@Roostersmum2 I didn’t have this exact side effect BUT once I got the sore throat, I didn’t hydrate as much as I should and that did lead to some unpleasant mouth tastes. If you have a sore throat followed by a metallic taste, could be part of dehydration maybe? Otherwise, I’m not sure. But I did also have sort of a loss of taste. I didn’t notice until I was eating a lot more garlic (husband didn’t complain, bless him, but then we were also never in the same part of the flat).

Is this some craziness. So. The blood test. Apparently, he hasn’t actually gotten ANY of them back yet so he’s not sure what it will mean. It’s going to show antibodies, though. So hopefully we’ll know maybe... whether I’m immune or whether my immune system is maybe doing something funky if the levels are really high? Like he said, since he hasn’t actually seen a complete test, he’s not completely sure yet. Ha! What fun we have.

It could be a couple days. It could be a week. It could be longer. He said it’s actually brand new and I guess they’re still waiting on reagents? BUT. He did say that he thinks I probably have a sort of post COVID syndrome (how shit is that!!) because he’s been seeing a lot of his patients that should be well over a virus but are still suffering the symptoms, fatigue especially, but also low grade fevers, the sore throat, headache, loss of smell, you name it.

Relieved to see you're (kind of) ok @RightYesButNo. Thank you for coming back.

Thank you RightYesButNo
My DP has recently been diagnosed with Myasthenia Gravis but only affecting one eye at the moment, Doesn't need a thymectomy following another scan. So I'm interested in your comments about antibiotics.

Sorry all, not great news. Before I could get antibody results, I had to be checked out at a clinic because I was still having trouble breathing, coughing, fevers.

They re-did the COVID tests. A throat swab was negative. A blood test wasn’t. So 30 full days after my first “positive,” the hospital woke me with my second “positive.” I don’t know what it means. The illness should last a max. 14 days. Am I like those people in South Korea? Or have I been made sick again, full stop?

They told me I shouldn’t be contagious if my throat swab was negative but... is it possible it was a false negative? I don’t want to risk getting anyone else sick still. ARGH. So yes, very frustrating, annoying, painful, awful, no-good, very-bad, time over here. Sigh. Thanks for following along, all.

@PurpleBlueAnemone I wanted to take a quick moment to respond since you said your husband’s MG is new, he’s got ocular, no thymoma. What I wish people had told me, so I could be mentally and emotionally prepared:

1. Over 50% (some say close to 80% but there’s no scientific proof of this that I could find, so that’s good) of ocular cases become generalized myasthenia within the first two years. (But that means 50% don’t).

1. Odds in your favor: men are less likely to get generalized myasthenia, and if they do, the group most affected is men over 60.

1. No thymoma doesn’t mean no thymectomy. In fact, it’s the first line treatment for generalized myasthenia. If he develops generalized myasthenia, you will end up discussing and maybe having one, depending on how his symptoms are. They used to make a huge cut, but now it’s tiny keyhole surgery (I know someone who even had hers done via robot).

1. It’s a tough balance between knowing too much which will make you worry constantly and knowing too little. I recommend NOT reading up on generalized myasthenia and doing your head in. Just know, if he develops a lot of fatigue and weakness, it’s time to get it checked out. I wish you absolutely the best of luck.

These are all things that came as a surprise for me, so I hope they help you.

I missed your earlier reply OP but I am glad that you do seem to be getting a bit better and getting good care.

You're having a rough time there OP hang in there!

You poor old thing. It sounds miserable. I really hope you're better soon!

Hope things start to improve for you soon
I’m watching with interest as my DH (also on immunosuppressants) is on a probable day 17. He’s avoided hospital so far so we can’t know for sure.

Can I ask how your sats have been throughout? DH’s improves for a while but are down again the last 36hours (84-92 as opposed to 92-96 in the previous 4 days)

@RightYesButNo thank you that is very helpful if a little worrying.
I hope things improve for you.
Keep On Keeping On

Thanks OP this is so helpful. I've been ill over 30 days now and only just recovering too (also underlying conditions) and on my second lot of antibiotics. I was interested you didn't lose smell, just needed slightly stronger food as I haven't either so I've had friends telling me I can't have it in that case.
Have you still got your taste/smell fairly normalish?
Hope you feel better soon. I would add flowers and tea if I knew how!

@Howmanysleepsnow I never got into the 80s consistently. I would have very small periods of high 80s. With my condition (mysthenia), usually my oxygen stays high. It’s my muscles that wear out and leave me unable to breathe, so it’s impossible to tell what’s happening without taking a blood gas draw (so painful) to see if, in addition to oxygen, I also have too much carbon dioxide, or other things.

BUT, with that said, 84 - anything really in the 80s - is starting to be “don’t fuck about” territory. What color is he? Super pale? Grey? Purple? Look at his fingernails - are they still nice and pink or are they super pale? My friend’s husband waited a VERY long with a fever and trouble breathing, and didn’t have a way to monitor his oxygen at home so we’ll never know how bad it got before he got help. Now, he’s gone from amazingly fit corporate master to a guy who atrophied in hospital, is having to deal with lung and liver damage post-COVID.

So yes, cannot emphasize this enough; when the oxygen starts to look dodgy (struggling OR pale OR in the 80%s), time to get it checked out by someone medical.

How are you doing?

Yes, how are you, OP?

@InAPrettyCabinet @YetAnotherSpartacus I wish I had good news but unfortunately, not quite. I’m still having a lot of trouble since my second positive test. Not exactly COVID-19 symptoms, though. It would appear that it’s more like COVID has done something to my immune system and now both my underlying conditions are more active than ever before in my life. I’m having symptoms I’ve only read about (in general, if I’m going to have something I’ve only read about, why couldn’t it be £1 billion, you know???)

I’m in touch with all my doctors and I’m still just barely managing to avoid the hospital (I’m popping just on the cusp of “requires hospital” level fevers), they’ve just run a ton more blood and urine tests two days ago, and I see an immunologist on the 7th, when I may have to start an immunosuppressant to get all this to stop.

In the mean time, my GP’s told me to just take it as easy as possible and just try to wait it out. Meanwhile, fell asleep earlier and now up at 430a with just aches and pains everywhere.

Seriously I’m sure you’re all doing it, but dear Lord, please please respect social distancing, wash your hands too many times a day like a mad woman, limit how often you go out. I’m sure I’ve said it all before. But I just cannot believe how long this disease has affected my life, and I want to cry a bit when my neurologist says it could keep going for quite a while still.

Thank you for updating us although I'm so sorry to read that things aren't going too well RightYesButNo. I hope you managed to get back off to sleep.

I am sorry OP, how rotten! I was diagnosed with ME after contracting norovirus 10 years ago. It did wipe me out for a long time after with lots of weird symptoms, but I'm a lot better now. I really hope you pick up soon.

I’m so sorry to hear that OP. I do wish you all the best for a recovery sooner rather than later.