Covid Antibody result opinions sought - CLL Support

CLL Support

22,512 members38,664 posts

Covid Antibody result opinions sought

Belfastbees profile image
23 Replies

I am mindful of so many here finding zero antibodies when tested and I've long held off getting a test. I've been back to work a while now but cases were low. As they are now picking up locally and England restrictions all but going (I'm in NI but expect a surge due to that here also) so I thought I need to take the test.

I scored at 189U/ml. I understand less than 0.8 is negative and it can go to around 2500. I think I recall the figure looked for in donating convalescent plasma was around 62 but not sure.

I'm minded to think this puts me in a good place, or does it? I am considering trying to get my specialist to advise but If the community here is buoyant and positive perhaps I'll take that!

I still will be taking precautions as its clear, especially with delta, that double vaccinated may catch it still.

For info 1st AZ 10/02/21, 2nd AZ 17/03/21 so I am around 4 months post vaccination. 56 male on w+w diagnosed mar20 but suspected since summer 2019.

Written by
Belfastbees profile image
Belfastbees
To view profiles and participate in discussions please or .
Read more about...
23 Replies
Walkingtall62 profile image
Walkingtall62

Hi, well, I was one of those who reported ‘lots’ of antibodies having being told by two companies. One researching the length of time antibodies stay in your system and one researching whether the antibodies come from the vaccine or the actual virus. So I recently sent my next sample to one of the companies and the report has come back - negative for antibodies! I now await a result from the second company. Just as Inhave got the hang of sending a test tube of blood away (read 5-6 large drops 🤣). So it was fun whilst it lasted, but?!?!? Take care, and good luck. P.s. I am now taking Acalabrutinib.

Belfastbees profile image
Belfastbees in reply to Walkingtall62

I understand, this was a private test and its mooted there will be a booster around september so i might test again after about 8 weeks. Its possible some of the results may be a false positive or a false negative. The quoted stats for that look good but it is something which will happen. When it came to doing the sample it was hard. talk about getting blood from a stone. 3 of their devices to draw blood werent enough. I ended up using a pin and 4 fingers but got it done. I do take it with a pinch of salt but cant help feeling a little more positive. I will not tell my employer as i think they will then expect things to return to normal which I'm not ready for at this stage.

Walkingtall62 profile image
Walkingtall62 in reply to Belfastbees

I am sorry, I am giggling at your efforts to extrapolate blood!! I thought I was bad enough. Then I followed advice. Warm the hand in warm water. Do some exercises of appropriate arm, elbow and wrist, and if necessary lower hand even further!!! I didn’t do the recommended star jumps 😂😂. I changed to using my middle finger as ring finger didn’t produce more than a drop!! However, I must add that a representative of one of the companies did say there weren’t allowed to suggest using the middle finger, and I have no idea why. The things we do during Covid!!! Take care.

Belfastbees profile image
Belfastbees in reply to Walkingtall62

Its important to always have a laugh when there is so much despondancy around.

I'd come in from a motorcycle ride. A pleasant day but my hands would have been cold, despite gloves.

The kit arrived on Friday, last post at 6pm and it was 4:45. In NI theres no post sunday or this monday and tuesday (holidyay). So no pressure.

I did think i wasnt going to be able to get enough blood but persevered. I did read all those methods and was impressed how well the body resisted my attempts to speed up the flow.

No doubt you had the instances of dismay when a lovely big drop at the last minute dropped and missed the tube.

Best of luck.

Walkingtall62 profile image
Walkingtall62 in reply to Belfastbees

So just in case it has been too hot for you. A friend did a similar test last week!! Took an hour she says to fill up to the line, but not before that luscious drop missed the test tube all together and somehow dribbled down her hand. Eventually picked the test tube up to put the top in, and yes, you may have got it, with blood still on her hands, the test tube slipped out of them, spilling contents over her white jeans and onto the floor!!! It still makes me giggle. Hope all well

Belfastbees profile image
Belfastbees in reply to Walkingtall62

It is too hot, also I have picked up a bug and have a sore throat and runny nose. Did a pcr test and it's not covid but not a lot of fun in this heat. It's way too warm, 28-30 deg much of the week but will cool down this weekend.

Walkingtall62 profile image
Walkingtall62 in reply to Belfastbees

Take care. Hope you improve soon. I am looking forward to this weekend to!!

Walkingtall62 profile image
Walkingtall62

😩😏☹️🥺 forgot that one!!!! It’s quite nice in the south of England too. Time to water the garden again. Enjoy tennis and the football.

ChristyAnne_UK profile image
ChristyAnne_UK

Amusing exchange! Lol 😂

My understanding is that there is still work to be done to assess the relevance of antibodies (and volunes), so no guarantees yet. Would love to know if there have been any updates on that yet.. anyone?

Pin57 profile image
Pin57 in reply to ChristyAnne_UK

Hi ChristyAnne - Here in US I’m in LLS antibodies study had my first test score (100) from J&J back in April and having read on this site some folks had same test lab (LabCorp) scores showing “high” range was either >250 or >2500. So I had many questions for LLS about the study.

I made several email inquiries to LLS about: (1) the scoring, what it means? (2) why the two different high range categories? and (3) to your question, when we test people would get study results and a better understanding of what the scores mean?

Well several quick replies by LLS docs, which were appreciated, and they answered…

(1) the typical one page long answer “we don’t know what the scores mean yet”, but it went on to note my 100 score was in the “middle range” indicating (in my humble opinion) “3 buckets” of scores possible, low-middle-high. But right after that comment on my score they inserted what appeared to be a dire (but wise) warning to definitely continue safe practices. (2) The two high score ranges were explained that generally (but not all) their labs on first test did >250 high range cutoff then for second test did a more “refined testing” in their words that allowed to show the >2500 high range. (3) No timeline (deadline) given. They said they did not have one (unfortunately) and that was per our last email exchange, early June. I have not followed-up, sensing they’ll tell us what they find out when they find out … n yes studies/research takes time.

Answer (1) n the understood new high range per (2) plus learning that people that get “good amounts” (my opinion) antibodies from vaccines (or from having covid) appears they get scores in the “thousands”, not 100, not 10, not 0…. But “Thousands”.

Now they keep saying “they don’t know what scores mean” but I put 2n2 together on this in my own simplistic view…. That “Thousands” appear to be “good” … my score of 100 per LLS earned me a stern warning to continue to do all safe practices etc. So I take 100 to be “not so good”. Maybe a half glass empty view but LLS did not say it was a good score, they gave me a warning! Humbling it was but understanding many fellow HUers showed 0 antibodies, unfortunately, is even way more humbling and that sucks. Antibodies is serious stuff, we’d all like to have thousands, it’s what the vaccines are about.

Anyways, sorry to report No timeline (slow train it is) on answers about antibodies LLS study here in US and what scores mean, but maybe somebody else has answers?

Hoping for the best for everyone on this topic, regarding 3rd shot/boosters, etc. We need good news, good solutions. Sorry my answer was alittle lengthy, but decided to throw in all the LLS study doc responses I had received on this antibodies topic for what it’s worth.

ChristyAnne_UK profile image
ChristyAnne_UK in reply to Pin57

Thank you so much for going to all that trouble. It’s greatly appreciated. 🙂

Belfastbees profile image
Belfastbees in reply to Pin57

Yeah it's a score, and mine is 189. Better than some, worse than others but it's still got unknowns. That's the reason I decided not to do a test after vaccination but the circumstances ahead seem to suggest it would benefit my thinking. I am minded to think I've a fair chance, and certainly the booster in September should have an effect to. That doesn't mean I'm rushing off to the pub, but a friend in work retired at Christmas and we've yet to celebrate that. I think that could be on the cards if other circumstances support it.

Mend123 profile image
Mend123 in reply to Pin57

I had more than 250 in first test and was told that was the same as more than 2500 when they changed the test. That was two months post second shot. At four months it had dropped to about 1900. My MSK doc said I was safe to follow cdc guidelines based on that first result. I still wear a mask indoors and do not eat indoors.

Pin57 profile image
Pin57 in reply to Mend123

Good info to know, interesting facts n thanks for sharing.

Congrats on a great dose of a-bodies too!

Astro617 profile image
Astro617 in reply to Pin57

Thanks for this response! I am on watch and wait and had my antibodies tested about 3.5 months after second Pfizer. My number was 154. I appreciate so much that you shared what LLS said about your score (so similar to mine). Be well!

SofiaDeo profile image
SofiaDeo

IMO if you are not battling infections all the time (especially the yearly colds/influenza), and/or haven't been prescribed IVIG regularly, and/or total serum protein/albumin levels are near normal, you likely have a somewhat functioning immune system. This includes T-cells. We saw this in HIV patients. Once their T-cell and other immune markers got low enough, we saw lots of opportunistic as well as other types of infections. So if you aren't always ill with something, you likely have some innate immunity.

We don't have enough experience with this virus yet, to be able to say which numbers on the POST INFECTION tests currently being done, correlate with optimal vaccination. It may turn out that these post infection tests are the correct ones, and someday find a "number" that indicates maximum immunity against Covid. It may turn out that a totally different test will end up being the optimal one that correlates with Covid immunity from vaccination. Who knows, it may end up being a T-cell test that ends up being the best indicator of Covid immunity, instead of an antibody titer level.

That's what they mean by "they don't know what the scores mean". And why there are studies running these tests, to get answers.

Belfastbees profile image
Belfastbees in reply to SofiaDeo

Yes, it will take time. I did watch a video I think sponsored by blood cancer UK, an immunologist hosting. She pondered specifically that people with poor b cell responses may find the t cells provide some response they otherwise wouldn't. It's become very clear that research has been lacking although in a pandemic there will be lots of data to be analysed for some time to come.

bennevisplace profile image
bennevisplace

Hoping for new insights into vaccine responses in CLL patients this afternoon, from one of the researchers. Check it out.

healthunlocked.com/cllsuppo...

Belfastbees profile image
Belfastbees in reply to bennevisplace

Very timely broadcast. Thanks for sharing. Signed up.

ChristyAnne_UK profile image
ChristyAnne_UK in reply to bennevisplace

Regustered. Thanks for sharing. 👍

LeoPa profile image
LeoPa

I didn't take the test as most say it's useless for determining protection level. I just assume I produced lots of antibodies (because it makes me feel good to think so 😀) but I keep behaving like it's covid all around and I have Zero antibodies. The rest is in the hands of fate.

Belfastbees profile image
Belfastbees in reply to LeoPa

I understand what you mean. I initially thought I Would take one after vaccination but there's a lot of unknowns so I didn't bother. That changed with things opening up and for me, in work with protections, the risk was increasing. I think it is a good sign, at least if I react to the vaccine I will react to covid, whether it's enough or my protection level is high enough is in the hands of fate. I do intend to relax only minimally. It's been a few weeks since I've been in a supermarket, as the cases were increasing. I now reason I mayne can chance it occasionally, off peak. I'm in NI and there no suggestion yet of a date when masks won't be a legal requirement which I'm happy with.

Blackbelt5 profile image
Blackbelt5

I have been tested for antibodies at 3 and 6 months after my Pfizer vaccine and both have come back negative for antibodies.

You may also like...

Results - COVID survivior, 4 shots, antibodies and on...

Northwestern University Hospital tells me to get every vaccination she recommends. This includes...

Covid 19 Vaccine antibody results

you were wondering: Vaccine Immunity Test ( S test) - Negative Vaccine Immunity Test Value...

Two years of caution and now new opportunities. Opinions sought

Three weeks ago I got covid after two years of precautions. Still not sure how I caught it, but the...

Covid Vaccine Antibody Test

I am taking Alacabrutinib and just received my Covid Vaccine Antibody Test done by LLS. It was...

COVID TEST - NO ANTIBODIES AT ALL?

me if it means I have zero immune system. I had both Moderna shots and this test came about three...