Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Talk
Covid

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

Long covid without a positive covid test or antibodies ?

28 replies

ablutiions · 24/10/2021 16:25

Has anyone else had long covid , without a definitive positive test or antibodies ? How did your long covid get diagnosed?

I've been ill for 4 months with what seemed like covid, but tested negative (multiple PCR and LFT). Subsequent bloods show no antibodies. I'm double vaxxed.

Back in Feb 2020 I had a very nasty virus (all covid symptoms except loss of smell) and was ill for about 3 months. No testing available at that time.

I currently have cough, tight and sore chest, exhaustion, dizziness and feeling spaced out, palpitations, very croaky, sore throat. All of these symptoms wax and wane and have been going for 4 months now.

I know it could be another virus and the dr is doing more tests.

It feels never ending. I'm usually a fit, active person and I'm just floored even when doing mundane things. Sad

Any insights or advice will be much appreciated. Thanks covid hive-mind.

OP posts:
Original poster
ablutiions · 25/10/2021 10:13

Anyone?

OP posts:
wooliewoo · 25/10/2021 10:23

One of the studies done earlier this year showed a sizeable minority of people diagnosed with long covid had never had the infection (sorry I can't remember the study to link it).

The point I'm making is there's a tendency to class everything as covid related at the moment. Other illnesses are available!
So make sure you are being investigated for other conditions which may require treatment.

Long covid is basically a post-viral syndrome. These have always been around and people have suffered them to various degrees. It's not uncommon for post viral syndromes to last for several months.

Coogee · 25/10/2021 10:30

I didn’t think there was any way of diagnosing long covid at the moment.

Original poster
ablutiions · 25/10/2021 10:34

@wooliewoo I did have post viral syndrome about 10 years ago, with (obvs) not covid, but it was nowhere near as severe as this.

The specialist is doing tests for a range of viruses, including whooping cough.

I guess it's a waiting game, but I'm not very good at patience. Grin

Thankyou for responding, I'll look up that study

OP posts:
Porcupineintherough · 25/10/2021 18:03

@wooliewoo

One of the studies done earlier this year showed a sizeable minority of people diagnosed with long covid had never had the infection (sorry I can't remember the study to link it).

The point I'm making is there's a tendency to class everything as covid related at the moment. Other illnesses are available!
So make sure you are being investigated for other conditions which may require treatment.

Long covid is basically a post-viral syndrome. These have always been around and people have suffered them to various degrees. It's not uncommon for post viral syndromes to last for several months.

So many inaccuracies in one post!
somewhereoverthechipshop · 25/10/2021 18:24

It can’t be long covid. Must be a different viral infection.

Flowersintheattic2021 · 25/10/2021 19:00

CFS

Firstshoes · 11/11/2021 15:32

Hi, how are you getting on OP? I am in the same boat. Started with a mild cough in March. Tested negative. Since then I've had constant productive cough, wheeze and breathlessness. GP thinks long covid based on symptoms and I have an appointment coming up for the long covid clinic. I still don't know if it is this or maybe an immune response to the vaccine, I had one in January and second in March. I just want to get better!!

Egghead68 · 11/11/2021 15:34

Yes. Diagnosed on signs and symptoms. 20% of people who have Covid don’t develop antibodies and pcrs weren’t available when I caught it.

Egghead68 · 11/11/2021 15:36

It was unlike any other illness I have every had and lasted march-nov 2020 with occasional mild symptoms into early 2021. Waxing and waning course with short periods of being completely well.

Firstshoes · 11/11/2021 15:42

Hi Egghead. What were your main symptoms if you don't mind me asking? My loss of smell is upsetting me quite a bit now as it's been so long but it's the constant burning lung/breatlessness and cough that's really bad

Katya213 · 11/11/2021 15:51

Viruses can wreak havoc with the body. You have my sympathy.

Original poster
ablutiions · 11/11/2021 17:11

@Firstshoes thanks for asking, and sorry you've had such a rough ride too Sad

I ended up seeing a specialist and she's confirmed RSV (another common respiratory virus ) as well as 'highly likely' covid as well.

I'm on a strong steroid inhaler which has done wonders. Lots and lots of rest. I've been off work since September and will need a phased return, so unlikely to be in the saddle until December in reality. So a slow recovery but definitely starting to feel better, as long as I don't do too much.

I've also been referred to a speech therapist to help me learn how to breathe properly again as months and months of coughing has got me into weird patterns that aren't helping!

How's everyone else getting on?

OP posts:
Firstshoes · 11/11/2021 18:05

I'm sorry to hear you have suffered so much but glad to hear that things are improving. What steroid inhaler do you have? I'm on Clenil 100 2 puffs twice a day along with montelukast but it doesn't seem to be helping much. The salbutamol works but I was taking too much of it and got told off by the GP. No idea what they can do at the long covid clinic but I'm really hoping they can help. I've been off work quite a while and I really want to go back. I'm NHS and they need me!

Original poster
ablutiions · 11/11/2021 18:51

@Firstshoes I'm on Symbicort inhaler - Budenoside. Strong stuff I think, but doing the job!

OP posts:
Firstshoes · 11/11/2021 19:18

Thanks ablutions. I hope they change mine when I go to clinic. The clenil just isn't working but I keep taking it just in case!

JS87 · 11/11/2021 19:36

It is possible to have covid without antibodies. I’ve heard doctors who have had people in icu with covid (classic symptoms seen on lungs on ct scan/ x Ray but have no antibodies when tested a few months later.

Firstshoes · 11/11/2021 20:14

Thanks JS87. That's interesting. It is difficult just not knowing what you are suffering from. I've been told hayfever, asthma, post nasal drip and now long covid.

Original poster
ablutiions · 11/11/2021 20:24

@JS87 I definitely don't have antibodies and tested -ve twice when Ill (PCR). Interestingly the respiratory consultant asked who had done my tests and at which hospital. This suggests that there is some unreliability in the tests I think.

She also said that pretty much anyone who had covid symptoms from dec 2019 and had been in a 'high density' location such as an airport or crowded tube was very likely to have had covid.

There is so much that we don't know about it, and the added complexity of the way 'normal'. Viruses and infections have had their usual cycles interrupted and disrupted makes it even more complicated. I really feel for the medics who are having to cope with so much.

It's the seemingly never-ending nature of it that is so hard to deal with. I like nice tidy Ilness with a beginning , middle and end to a nice predictable pattern Grin

OP posts:
Egghead68 · 11/11/2021 21:23

@Firstshoes

Hi Egghead. What were your main symptoms if you don't mind me asking? My loss of smell is upsetting me quite a bit now as it's been so long but it's the constant burning lung/breatlessness and cough that's really bad
All sorts - most persistent were fatigue, high heart rate (POTS), sore throat, brain fog and an odd chest pain/burning but I also had breathlessness, eye sensitivity, cough, altered smell and taste, gynae issues, plummeting blood pressure etc.
oldandscunnered · 11/11/2021 21:35

Had most of the symptoms you had OP and was ill for several months. A few weeks ago I have a positive lateral flow followed by negative PCR but had very similar symptoms, although I wasn't short of breath this time and it hasn't lasted as long but it's a weird set of symptoms that I had never had before. Same as you first time I was ill there were no tests but at least 4 doctors suspected Covid.

shouldistop · 11/11/2021 21:44

If you took multiple pcr tests which were negative and antibody tests which were negative then why on earth would you assume what you have is long Covid?

Timeisavirtue · 11/11/2021 22:15

DP just had a blood test because he was feeling similar to you, he was ill about 4 weeks ago, he took 5 lft and 2 pcr, all showed negative.... he is still suffering now. He’s been signed off sick for 3 weeks. I’m a bit miffed because the rest of the house has had colds, well what we thought were colds but may have now actually been COVID, we didn’t have any of the main symptoms so no need for pcr, all lft came back as negative and we could have inadvertently spread it.
Thankfully we are all jabbed in the house, well 6/8 are. I’m grateful that if it was COVID it was very very mild....

Timeisavirtue · 11/11/2021 22:17

@shouldistop

If you took multiple pcr tests which were negative and antibody tests which were negative then why on earth would you assume what you have is long Covid?
Well the blood test only shows up too 6 months ago, so if she had it before that it could well be long COVID.... Thanks for being patronising!
RaisinFlapjack · 11/11/2021 22:28

I am confident I have long covid but it stems from an infection in March 2020, so pre-testing. I was tested for antibodies some months later and it came up negative. Certain it’s long covid though.

DH developed long covid symptoms months after seemingly fully recovering from a very mild covid infection. If it wasn’t for the commonality with my own symptoms we’d probably have never made the long covid link.

I mean it could be lots of other things but I wouldn’t rule out long covid, it’s a weird illness.