Antibody testing: I noticed from one or... - CLL Support

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Antibody testing

studi profile image
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I noticed from one or 2 comments that after the 2nd jab people had not built up any antibodies.Can anybody tell me which accredited lab people have had this test done.I rang the hospital this morning and they are not testing CLL patients until the get the go ahead from the government.This is worrying for me although I am still being very careful.Thanks to anybody who could reply please

Thanks. Trafford Reeder

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studi profile image
studi
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11 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi studi,-

Your question is one of our most frequently asked recently and we have a excellent Pinned Post created by KatieBlue that summarizes many answers here: healthunlocked.com/cllsuppo...

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And I found a helpful set of comments here:

A posting by Dr. Susan LeClair on groups.io/g/CLLSLL/message/...

Susan LECLAIR May 2 #31172

Your immune system is composed of three major “systems” that can work independently of each other or work in concert. That one of them might not work well as you want does not lessen the other two. As part of the early research, all three systems are triggered and can act independently. We do not routinely test the other systems.

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This blood test looked at the number of antibodies formed by a specific date. Is it possible that people with altered immune systems take longer to make antibodies? That would require taking too many blood tests over a longer period of time and so that is not done outside of research studies/clinical trials.

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Is it possible that your immunization triggered more memory cells than active antibody producing cells? We do not test for this.

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Reporting of SARS-CoV2 post vaccination does show that, while subsequent infection is possible, there have been no reported deaths and no reports of serious disease. Is that true for the immunocompromised? We do not know.

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This virus is approximately 2 years old. Never in the history of science have we learned so much about a virus, a disease, and or prevention in so short of time. Do we have all of the answers? I suspect we do not yet know all the questions so, no, we do not. Perhaps what we all need to do is to concentrate on living each day to the best of our ability.

Susan Leclair

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And of course you can read several of the other recent postings and replies by looking for the box on this page labeled:

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*Antibody testing after vaccine? healthunlocked.com/cllsuppo...

*COVID TEST - NO ANTIBODIES AT ALL?

*Antibody Testing Results healthunlocked.com/cllsuppo...

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Len

Panz profile image
Panz

I would like to reply but I am in the States and so it is different with each country. I hope someone is able to give you some in put. Really no one really knows much but they are trying to get it sorted out. Here I have been tested 3x by the Leukemia Lymphoma Society hence referred to by us as the LLS. They were testing me at 6 weeks, 8weeks and just this week 90+ days from my last Covid shot. These test were checking to see if my B cells had created any antibodies and I have had no antibodies on all 3 tests. They are now working up a study to check to see if the T cells were able to make any antibodies. This study is to begin sometime in June. They are suspecting that those people not making antibodies with the B cells might just have their T cells kicking in. They are finding that people who have been treated for their CLL quite often make a lesser amount then the untreated. I have had CLL for 32 years and for 17 of those years I have taken Leukeran on and off as the numbers needed to be brought back into line. I have also had Imbruvica 40 for 6 months before I was pulled off due to two types of pneumonia in both lungs at the same time. I am currently back on Watch and Wait, a super great place to be!

The Leukeran taken over the 17 years distorted my immune system and so I receive IVIG every 4 weeks and will for the rest of my life. They feel it is the length of my history is the cause of my negative antibody tests. I am now waiting to join the T cell testing study. The T cell test is not available to the general public just yet but perhaps maybe in the future.

In the meantime life is pretty darn good and I am so very grateful for each and everyday. Sometimes the waiting is challenging.

You take care and I wish you get some replies from someone in your country. It is a very small world and we are all in this together!

Panz 🙏💕☘️🙂

neurodervish profile image
neurodervish

Just to add to lankisterguy 's excellent response, here's yet another available article (in case you're focusing on this as much as I've been 😬 ) mdanderson.org/cancerwise/w...

By the way, you may want to lock your post, so that it's not open to the general public and more members feel safe to respond.

Bikram21 profile image
Bikram21

I used LabCorp in the US

LeoPa profile image
LeoPa

Even if you did the test it would tell you nothing about your level of protection.

blowinginthewind profile image
blowinginthewind

I may be reading your sign off incorrectly. But Spire Hospital Manchester are doing them, and I think Alexandra in Cheadle are doing them. BUT I used testingforall which is a kit they send you and take the sample and send them back. It was fine and I had results. BUT it is a lot of blood you are asked to get and if you are uncomfortable with what they sweetly call lancets but in fact make a 2mm cut in your finger, and I needed to do one in three of fingers to get the amount they needed, then self testing isn't for you.

Good luck whichever you choose.

Liz in UK

Feisal profile image
Feisal

Hi studi, sorry this may not answer your question, but just wanted to mention that I had my 2nd AstraZ shot at the end of April. I twisted an antibody test as part of my regular bloodwork. No antibodies showed up. Hopefully they do manage to show themselves soon!

skytortoise profile image
skytortoise

Hi Trafford,I paid £50 for a home test from Lloyds Pharmacy Online. Results were negative for IgG and IgM Sars Cov 2 antibodies. However, they do point out that the test has a sensitivity of 91%, so that for every 100 people tested , 91 people will test positive, but 9 people will test negative (a false negative). So like an MOT test on your car, the test result is only valid at the time it was done. As mentioned comprehensively elsewhere in our forum, antibodies are not the be all and end all of immunity, it is so much more complicated. Keep well. Freddie

sparkler profile image
sparkler

My CLL Specialist organised the antibody test. He said it’d be useful to know if I had any after 11 years W&W and no treatment. I didn’t have any; none detected. I had the AZ vaccine, jabs 9 weeks apart and the bloods done about 2 months after the 2nd vacc. Disappointing to say the least.

Be well and stay safe

sparkler x

KirbyBH profile image
KirbyBH

LabCorp does the test. My oncologist gave me a RX to have it done there. I am still W&W and my results were good. I had antibodies 1318. Good luck to you.

DanBro1 profile image
DanBro1

I have donated two blood samples to the US Leukemia & Lymphoma Society survey of CLL patients who have completed their 2nd Covid shots (in my case Moderna vaccines). At two months post 2nd Covid shot, my antibody results came back ZERO - no antibodies detected. This week (June 7, 2021) I donated another blood sample post four months after my 2nd Covid shot, my results again came back with ZERO antibodies detected! ☹️ I am still in active CLL treatment. I am on 400MG daily Venclexta, plus a monthly Gazyva (Obinutuzumab) infusion at San Antonio's Mays Cancer Center/MD Anderson hospital. I have two infusions remaining. I will stay on Venclexta for another six months after my infusions are complete. I am responding VERY well to my treatments. My blood work is decent and my lymph nodes have dramatically withered.......

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