Thanks again for all your supportive and informative responses. Finally, Testing for All got more antibody tests in stock so I’ve ordered one. At last, my husband can have the test!!
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Hi @Mandypandy, good news, please let us know how your husbands test goes, you are not taking one then?
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How are things with your niece? Did anybody else test positive? I know how worried you were!
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I also asked my consultant if I could have an vaccine antibody response test she said they don’t do them so I asked if I could have it done privately and she said there isn’t a test as yet and I asked her to sign me up to any trial when she can
I applied to Forth for a vaccine antibody test and they don’t do them
The only ones they do are a test to see if you have naturally occurring antibodies which I believe is what most companies offer if you look into it.
I have a close friend that works for a large pharmacy and they are not aware of a vaccine antibody test and if there was Boots would probably would be the first to offer it.
I had to attend A&E after my first vaccine due to pain in my head had a couple of CT scans as I have a blood clot history, I’m fine and I had a blood test and swab to see if I have naturally occurring antibodies and both were negative
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A real mix of experiences and recommendations here.
I’m in remission from high grade NHL and feeling very well. However I’ve just had the results of the antibody test arranged by my consultant which shows I have none. I wonder whether I, and others in this position, will be offered a repeat double jab as a single booster will surely have no effect. Its so frustrating that the Govt proudly says 75% have now been double jabbed but don’t acknowledge the many for whom this is meaningless.
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Hi Jan
You are the first ET patient I have come across who has received a favourable result in an antibody test !!
Admittedly I have only previously heard of antibody scores after a single jab.
In that case. It was said that the medicine being used for ET and some other MPN diseases was the crucial factor. I am on hydroxycarbamide myself. I won’t press you but if you could say you had also been prescribed it ( and taken it for some time) it would boost my hopes of having antibodies myself.
I plan to take a test after the promised booster jab.
Jumbo 4
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I have CLL on watch n wait my consultant wouldn’t do a antibody test. Asked GP which best one was and she asked oncologist at my hospital he said to the dr could do blood test and they’d do antibodies test. Came back I had antibodies but didn’t say % or anything. But some better than none
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Okay not been going out really avoid shops but did go to daughters wedding, which was lovely. Daunting as I’d not been near people was very careful and everyone kept their distance lol feel like a leper but better safe than sorry. Got granddaughter christening but everybody is taking lateral flow test so makes me feel better still wearing mask in church and will keep away from people. I do want to get back to some normality but still scares me. Bloods in October so fingers crossed all’s well.
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It sounds like you have really supportive friends and family around you which means you are not excluded from those important events. That’s really great!
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So @Shelz you have had an antibody test and found that you do have some antibodies, but what we do not know is exactly what that means.
I am so glad that you got to your daughter’s wedding but as you say we sometimes feel like lepers.
Your family and friends sound so supportive.
Please let us know how your bloods go in October and stay safe.
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I know Erica I did ask but all dr said was had I had coronavirus as I’d got antibodies when I said no she said must have gotten from vaccine but as you say what does it mean. Will do you too
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Hi everyone…
New to this site …
Was diagnosed with CLL about 4 years ago, put onto watch and wait.
My lymphocyte count passed 5, 2 years ago (the number required for CLL, diagnosis apparently) and is now about 6.5. Apparently if it reaches 8 I can (will?) be referred back to my consultant. Am having 6 monthly FBC at the moment.
Had my second jab in March (AZ), Had my FBC in May and the lymphocyte count had risen to 7.4, but it has now dropped back again to 6.5 . (No idea why!).
I had a Lloyds anti body test for the Spike protein (£50), in June and it came back positive. However I was given the number at 1.5 (units per micromole, I think) whereas a negative is regarded as below 0.83. Apparently ‘normal’ people have counts much higher after their vaccines.(greater than 10),
Due another blood test shortly, and I will follow it up shortly with a further antibody test.
I am being careful still (masks, no large indoor gatherings ,etc), but I play golf 3 times a week (no socialising inside though!) , and I am seeing my grandchildren (6 and 8)who are being regularly tested, roughly once a week.
I thought I would give people my understandings as to where I am and where we are now, and that some may find the numbers I quote useful.
No one yet knows the implications for people like us. We must be patient, and hopeful that the new antibody vaccine research can be given to us - if we need it.
If any of the information is ‘sensitive’ for some people then I apologise, but it may give people more understanding of the numbers. (beware Lloyds may produce a totally different numbers and scale to any other companies, including the NHS, though I believe they all end up being tested in a similar place)
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Hi @daveOsprey and a big welcome to the forum.
I think this is such a huge subject and it’s good to hear everybody’s experiences. You can see from the previous responses how peoples experiences vary. I think you explain things really well and are very clear that all tests are different and that test results read differently number wise.
I hate being patient but agree that it will take time and research to really understand the efficacy within different conditions.
I am on watch and wait with 4 monthly blood tests and consultant appointments for NHL Follicular Lymphoma.
You seem to be doing what you need to to protect yourself whilst still doing the things you enjoy which is so important!
Please let us know how you get on. I look forward to hearing more from you 
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Hi @daveOspreyI am so glad you have found us and thanks so much for contributing so much already.
I am also on watch and wait for CLL and have found that my blood test results do fluctuate a bit.
I did an antibody test soon after my 2nd Pizer vaccine and no antibodies for me at that point.
I haven’t done another one as I wasn’t sure what it would actually tell me, If I did have any antibodies, how many should I have and of what quality would they be against a ‘healthy’ person.
I am still basically shielding apart from one visit to a seriously ill relative and family last week.
As for being a patient patient, that is not one of my qualities.
I really look forward to hearing more from you, you are now part of our supportive forum.
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Hi Nichola75 Thanks for your kind welcome. I have had CML for 3 years now but haven’t been able to tolerate most of the TKIs. Have been on a small dose of Dasatanib for the past 3 months and I am tolerating it quite well. I am well most of the time but I get very tired. I’m still very worried about catching Covid but I’m being very careful.
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I know from teasing others posts that the fatigue can be debilitating at times! Does anything help it or do you just have to give in and rest?
I’m glad you’ve found a medication that you can tolerate better. It must be really frustrating when side effects are not good!
The worries about Covid seem like they are never going to stop don’t they! Are you managing to get out at all? X
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Hi @Maggi183 I am glad that you have found the treatment that works for you. I expect you do get very tired though, that is so natural.
I find it very difficult to work out the realistic risk from Covid out there.
As you are currently on treatment it must be even more worrying and it might be worth talking to your medical team, although I read a post today where two medical people were giving conflicting thoughts.
Covid is still an unknown in many ways.
Look after yourself and do what you are comfortable with.
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