Hi All, I said I would post my results. I carried out the antibody test 3 weeks after my second Pfizer vaccine. To say I am disappointed is putting it mildly!
This is the result, no antibodies found. I could ask for a Dr to explain it to me for an additional charge of £42. I cannot seem to download the full report on my iPad. I will try later on my phone. I am hoping, as others have stated that the test does not include T cell activation. Any positive comments welcome!
Good luck to anyone else in the process of testing.
Judy
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piggie50
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Half of me thinks, I don’t believe it and the other half thinks, why did I bother to get tested. If I hadn’t tested I would be merrily thinking I was protected. I’ve already asked my consultant if I can get a test and she has said no.
I’m feeling quite depressed about it all now, when on the whole I have been fine all the way through.
Thanks Phil, the report didn’t show before but it is now. You must feel very relieved. I don’t know whether to do another one or leave it to fate!Very best wishes
I’m really shocked (wasn’t expecting that) and can’t imagine how you’re feeling right now. We with blood cancers have invested so much hope in the vaccines. Hopefully, someone on the forum with some expertise or better understanding in these things can elaborate more. It can’t be left this way for you, it’s like a job half done, you need clarification.
My hubby and I are due to do ours next week, so will upload the results here.
I was thinking you’d probably feel this way, as I probably would too.
Maybe you could ask Maz to ask Professor Harrison for some guidance, even if she can’t provide answers, she maybe able to offer some professional advice. X
Hi Judy. That is a disappointing and concerning result. Sorry to hear that. Are the GP’s not getting into the questions of testing? I suppose if it’s a private test they will not be drawn into it, but it is an extremely important test, how are we to know if there is protection or not after the vaccinations? Would love to hear what the results and answers are IF you get any feedback. Thank you so much for posting. Hope you and your family are all well.
Yes, we are all good thanks Sandy. I asked about antibody testing at my last consult and was told RD&E are not doing any testing. They are waiting to see results of any studies that come out. I don’t want to try my GP it’s too stressful to even get through on the phone!
Hopefully we can get a coffee together this summer, ☺️
I am trying to make sense of all this, as I am also doing a vaccine antibody test in a weeks time with ‘Testing for All’.
What I take from this is that MD Andersons Blood Bank look specifically for antibodies to the ‘nucleoapsid protein’ and not the ‘spike protein’ which Pfizer, AstraZeneca, Moderna etc were developed for, hence why there would be negative results.
In comparison, ‘Testing for All’ look for antibodies to the spike protein. There is a link below which covers ‘frequently asked questions’. Their accuracy appears impressive.
I found this link more useful. It was a really interesting read, and I didn’t lose concentration, which I tend to if an article is too intense. It’s straightforward and makes a lot of sense.
It’s encouraging that the experts believe there would be some level of immunity after the vaccine in the immunocompromised too.
The first paragraph sums it all up really. Why should we try to make sense of post vaccine antibody levels when the Drs aren’t too sure what the results mean at this stage.
Thanks for this, very interesting. I can just say that surely this means we must make sure we have our jabs, I had tele consultation with heamatologist Wednesday and said hadn't had 2nd jab yet and he confirmed must have it. Think there are so many unknowns covid at the moment, perhaps more will be certain in the future, keep heart all.
Hello I also take imune suppresive jab for my colitis ulcerosa. Studies already show that when People on this medication who had covid have no antibodies in their system.
Look at the frequently asked questions column of Testing for All (Should I take this test if I am on immunosuppressant medication/am immunocompromised) it advises to wait six weeks before taking the test!
I wonder if this is the reason why your antibody levels haven’t reached an optimal level yet? Glad I’ve seen this, as will now delay my husband’s for as long as possible, although I think I’ve read somewhere the test has to be used within a certain time limit.
That may be the answer Mary, although I’m not sure I want to take another one? I found it quite difficult filling the phial with blood and I consider myself a bleeder! 😂
That is quite an interesting result Judy... I shall be most interested to learn more about your findings, if you do decide to ask a doctor, (who by the way may not know the answers?), what their experiences might be able to illuminate etc... Fascinating!
Hi judy. It must have been so disappointing after doing the test to see the result. I agree with Mary about the timing of the test especially as you take Methotraxate for your RA. Maybe you could ask Professor Harris through Maz for an explaination as Mary suggested. I personally wouldn't trust the test anyway so wouldn't purchase one but can understand why people feel the need to feel protected especially after the year we've been through. Hope you don't stay to downhearted for too long after a test which might be meaningless in the long run anyway. Stay safe Judy. Tina.xx🤗
Oh no Judy, that is so disappointing for you. I had my second AstraZeneca vaccine on Wednesday and have been thinking about ordering an antibody test... I don't know if I want to bother now. Perhaps it's just best to remain blissfully ignorant.
I received an email from Blood Cancer UK yesterday, and they are apparently starting to research whether people with blood cancers are protected from Covid-19 after vaccine.
I thought the antibody test merely showed if you’d had covid and developed the antibodies, which is why the antibody test doesn’t show the effectiveness of the vaccine.
I’ve asked to have the test to see if the vaccine has been effective and have been told no and that’s by the nhs trust I work for! I’ve decided not to stress myself out over things I can’t control, I’m not really going out and about other than work and then I’m in full PPE all day, there’s not much more we can do. If A test shows I don’t have T cell antibodies don’t have the antibodies would I be doing anything differently, probably not. We need medics to look into this, it’s so simple we all get our bloods taken every 3 - 6 months, if they were interested in the research, testing could take place as part of our routine appointments!
Very disappointed for you and what this implies for every one with an MPN. My wife has MF and only had one vaccination so far. She did possibly have covid while in hospital for a massive bleed last August. I paid for a antibody test which came back negative in December. Since the she has had another big bleed in February and is in hospital for a massive bleed she had on Wednesday. With all the blood losses and so many bags of blood transfusions it will be impossible to not be shielding for a long while yet. At least she hasn't had her second vaccine.
Hi Judy Professor Harrison is doing antibody tests on 100 MPN patients looking into the vaccine protection and the government are developing protection for blood cancer patients as we speak with Astra Zeneca I’ve had an email off the health secretary explaining but won’t be available to September
creakyjoints.org/living-wit... The above link is informative in the sense that it explains just how much we still do not know about antibody creation after vaccination for Covid. It also contains a link for that gives guidance to folks who are immunocompromised and have been vaccinated. I hope you find some of it useful and wish the best for you.🙏🏻
Thanks for posting Judy. I'm sorry for your disappointment but you have certainly got a lot of such useful responses that we can all benefit from -this forum working at its best! It would be so good to feel reassured about the protection the jabs give us!
I had an antibody test approx 6 weeks after my first AZ vaccine as I’m contributing to the Virus Watch research, in which I send them a sample of blood monthly. To my surprise it came back that I had some antibodies (though not informed of the amount). Did second test the other day so will be interesting to see the results of that 11 weeks after 1st vaccine. Got my second vaccine tomorrow, so hopefully onwards and upwards!
Unusually I have just received a response from my heamatologist , I e mailed his secretary last night. Very Impressed! He’s says.....
“Please can you let Judy know that the test below is difficult to interpret; there are several types of antibody screens available, some of which are reliable indicators of immunity following a vaccine while others are more reliable demonstrating immunity following the itself. While this claims to pick up both, I do not know how reliable it is. I would recommend she continues to follow government guidance as and when it is updated; at present, the government advice to shield has ended but this may change in future if the pandemic worsens again.”
Hi, I asked my haematologist about my negative result - he said the existing test is still only a research test and not to take the results too seriously at the present time - and it doesn’t show whether any T cells are present. They still don’t know which blood cancers are resisting the vaccine. I have decided not to worry about it. ....while carrying on being very cautious .SkipperL
That's very helpful. My husband , brother-in-law and 2 friends (all early 70s and about 10 weeks after first vaccine - no mpns) took part in the Bio Bank antibody research test - all 4 tested negative and we have taken from that that the test is not sophisticated enough yet, rather than vaccine hasn't worked. I think there were some earlier posts about the Bio Bank one where people had tested negative as well.
Mine was definitely positive ! I had probable very mild Covid in March 20 and both Pfizer jabs.
Just enrolled for the StThomas & Guys Blood Cancer / Vaccine study - where they will take bloods for lab testing - but you do not get to see your individual results!
That is excellent news. Interesting you had Pfizer- my husband and two others had AZ - don't know about 4th but suspect he did also.Very envious you are able to do London test even though you won't get individual result. Presumably the more volunteers they get the better. I guess patience is needed while we wait to hear outcome!
I’ve wondered for a while having talked to various people after their jabs some don’t seem to have any reaction, some are ill for days which makes me think those that have no reaction maybe that’s the first indication the vaccine hasn’t worked, I had the Astra one with seemingly no reaction for 24 hrs then I started to shake and tremor in the end I went to bed, next day I was fine again. I’ve just had my second jab today so I’m quite interested to see what happens.
HI Judy I live in the US and had the Moderna vaccine. Because I too was concerned about whether I had any protection from the vaccine, my doctor had an antibody test performed (blood test) that measures for the level of spike proteins that were activated. My test results showed that had a very robust response to the vaccine. I don't know what test you are using and whether it measures the level of spike proteins. Barbara
I did a home test for Biobank yesterday - and it showed positive for antibodies.I was slightly ill 13 months ago after known Covid exposure and have had both Pfizer jabs - the 2nd was on Monday.
However, the test had very specific instructions not to worry if it did not show positive after being vaccinated, as the vaccine works well at low levels of antibodies which would not always show up on the test and also possible effects on T cells etc!
So do not worry too much - most of us, as anyone else- are unlikely to be very ill anyway!
Hi. Which antibody test did you have. I have been told the one available on the uk government website will only tell you if you have antibody as a result of having Covid not the vaccine
Hi all, I did a bio bank antibody test 3 weeks after my second Pfizer jab and it was positive.The line which indicated a positive result wasn't as well defined as my husband's but the information stated if there was any visible line no matter how feint it was positive.
I hope this gives hope and confidence.
I am 69 ET/PV and take 1000mg hydrea and 1 asprin daily. Also, I have no reason to think I would have these antibodies from any other source than the jabs.
So very disappointed for you Judy. It’s all so hard to understand. Maybe it’s the T cells that are important more than antibodies. I wish they’d come to a decision and let us know if we CAN be fully protected. I’ve read that Hydroxycarbamide doesn’t suppress our immune system. I suppose it’s the MPN’s that do that. Take care. Fran
Yes Fran it is a disappointment. My Heam has always said my immune system is not suppressed! And, looking at my blood results, it’s not, when compared to someone with leukaemia, so I just don’t understand. I’ll just carry on being careful and hope for the best whilst still having some kind of social life!Judy x
Hi Judy, I phoned my GP about the negative antibody results. He was very surprised hearing I had had both AstraZenica vaccinations. To say he didn’t have a clue would be putting it mildly. He told me to phone the helpline number that came with the kit. 45 minutes of terrible music later I finally got to speak to someone. All he kept saying was there’s absolutely nothing to be worried about and all I kept saying was I am vulnerable and as I have a blood cancer I will worry. He said I may have antibodies but not enough to be picked up by the limited test they have. All I can say is what a sodding waste of money. This test isn’t worth sending it out and now has caused a huge pile of added stress to those of us who needed the protection more.
I waited 3 weeks after my second vaccine, but Mary found on the site that you should wait 6 weeks if immune compromised. I e mailed Testing for all last week and had a confirmation that they received my e mail. On looking on their site is says to expect a reply to complaints in 20 days, so, I guess I have a while to wait! 😂
I’ll let you know if I receive anything constructive.
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