Antibody test: I just got my 2nd covid... - CLL Support

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Antibody test

PerfectPurple profile image

I just got my 2nd covid vaccination, Moderna. I would like to get an antibody test in a few weeks to make sure it did the job since they don't know yet whether the vaccine will work with CLL. Has anyone else done/ considered this idea? Is it even feasible?

45 Replies
lankisterguy profile image
lankisterguyVolunteer

I did propose that for myself and mentioned it several times in postings and replies. -

Later comments by CLL experts (including my own CLL expert doctor) and several credible infectious disease experts cast real doubt on whether the tests used after a COVID infection would be accurate for testing after the Pfizer or Moderna shots.

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I had the 1st shot last week and will get my 2nd on March 10. Around the beginning of April I will see if I can get the antibody test (I believe there are two different kinds now in use in the USA) and I will see Dr. Furman on April 13 to get his current input on whether there is a test that might be useful.

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Len

Lankisterguy is correct, the antibody tests currently marketed are intended for post infection uses, not post vaccination. The CDC & others have addressed this:

fda.gov/media/141550/download

cdc.gov/coronavirus/2019-nc...

academic.oup.com/femspd/art...

This Washington Post article explains it less technically:

washingtonpost.com/lifestyl...

"Commercial antibody tests may not be searching for the same antibodies that the vaccine triggers. Someone who has had the vaccine and is immune to the virus may still test negative for certain antibodies, Murphy explained."

Yes definitely interested.... I am getting the Spike Protein Semi Quantative antibody test at Quest on March 9th. Labcorp has it also. My PCP isn't set up for it yet. 🙏💕

PerfectPurple profile image
PerfectPurple in reply to GMa27

Please add to this string both the results of the test and any feedback you got about how useful the test will be. Most of the other replies seem to indicate that the antibody test may not be useful looking for vaccine antibodies since it is designed for post-Covid illness.

Yes please do, since no one really knows!

Hi,I am in UK, I have come ax this company:

testingforall.org/individua...

There are 2 test kits available, one to test for antibodies if you have had covid £39), and ont to test for antibodies post vaccination (£49).

I have ordered the latter and will do the test next week, which will be 3 weeks after my jab.

Hope this is helpful 🙏🏼

Shooey profile image
Shooey in reply to AutumnJ

Thanks for the info Autumn, I was looking into this yesterday and found a couple of private clinics offering the same test but for considerably more money ! Not sure if you should wait until after the second jab which for me will be May or take the test after each jab?Best wishes

Shooey

lankisterguy profile image
lankisterguyVolunteer in reply to AutumnJ

Hi AutumnJ,-

I forwarded all the info to Dr. Furman with this question: Does any of the information below convince you that the Roche (Anti-SARS-COV-2 S) test or any other tests might be useful for us?

And I got a one word answer from him "Nope"

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Len

AutumnJ profile image
AutumnJ in reply to lankisterguy

Hi lankisterguy,Thank you for finding that out. It's always good to have a medical perspective, possibly even more useful if there had been an explanation of sorts.

Did he give any indication as to how we are supposed to know if the vaccination has worked for us?

I'm just curious to know.

lankisterguy profile image
lankisterguyVolunteer in reply to AutumnJ

He and I have had extensive discussions on whether any of the tests would provide meaningful information. -

Especially whether CLL patients had produced useful antibodies from the vaccinations.

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We both are aware that some CLL patients can have normal IGG levels and get frequent infections and others have very low IGG and do not have frequent infections. So a test of IGG antibodies for COVID -19 would be suspect. -

He, like the CDC quotes above by SofiaDeo continue to state that the tests do not provide accurate infomation, especially for immune compromised patients.

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So his one word response is consistent with his past position, and I am not surprised.

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Len

AutumnJ profile image
AutumnJ in reply to lankisterguy

Hi,Thank you for your speedy response. To be honest, I am not a fan of a one word answer, but then I haven't had the privilege of your 'extensive discussions' with Dr Furman.

I am aware that he is eminent in CLL and I await his sharing of this information with the CLL community.

You say that you are "both aware" that some CLL patients...

I would suggest that this is not however exclusive to you both. CLL patients are incredibly informed and maybe you did not understand how patronising this came across.

I'm sure that like many other CLL patients, I have been monitoring my immunoglobulin levels and linking those results to my levels of infection. I am certain that when I get this particular test done, that I will be able to interpret my results in the context of my own condition.

I understand that this disease is heterogeneous and that is why I am participating in the study at Birmingham University to monitor the response of CLL patients to the vaccine(s).

I am not promoting the use of private tests, nor am I affiliated to the company that I have ordered the test from.

Given that in your own words, the response to such tests may be 'suspect', I would say that I am in favour of drilling down further into what that might mean. So that in future we are all more informed.

SofiaDeo profile image
SofiaDeo in reply to AutumnJ

Hmmm not sure where the confusion was about sounding patronizing. Regarding your link, I think you misread something. The company says they offer a test "for IgM and IgG" but this is for general levels, not Covid-specific. No one has a test for Covid specific IgM and IgG yet, and we don't yet have enough data to say whether or not the tests we have to indicate current or previous infection will also point to an immune response from the vaccine. That's the the point of all the people in the links above saying "current tests do not measure vaccine immune response." Measuring general IgG and IgM won't indicate antibodies specific for Covid-19, which is the data we want. We need to develop those tests, but it's going to take some time. And as you accurately pointed out, even if we have IgG levels that are "good" or "normal", there are other factors. So spending money right now on these tests will likely only tell if you have had a Covid infection. Their header is misleading IMO; read a little deeper and they say it's quantitative, not qualitative. I know that the further link states "this will tell if you have antibodies from both vaccination and infection", but if this were true, where are the research documents? There would be articles & press releases everywhere. Companies like us to spend money on their products, and few will try to stop you, especially if their advertising is misleading (which IMO this site is).

My understanding from the following link is, there are studies being done to see if these tests DO show response from vaccination, but the trials aren't finished, nor has interim data been released:

medtechdive.com/news/roche-...

Because if there was good preliminary data showing a correlation, they would be shouting it from the rooftops, it would be all over the news.

I asked my CLL specialist regarding antibody testing post vaccination. He said it would not be routinely available here in Oz. Whether we can get it done privately in the labs I don’t know. But it seems vital to know those of us that are immune compromised whether we are safe to be out in the community, travel etc especially when there are localised outbreaks and no lock downs

I live in Israel. I had the two doses of Pfizer vaccine. One month after the second dose I did a serology test which found covid-19 antibodies (just above the threshold to be considered vaccinated). It should be noted that till the beginning of Febuary, the serology test in my HMO was looking for one type of antibody of infected people, and from the beginning of February, they are looking for both types of antibodies (infected and vaccinated). If I remember correctly one is called "N" protein and one is called "S" protein. On the same day, I also did my regular IgG test which also shows an increase but I am not sure if it is related to the vaccine.

Hi RamOren, thanks for posting this, especially as the value of antibody testing after vaccination is controversial. It would be interesting to know details of the test you had - perhaps you can find it among the many tests listed here ? fda.gov/medical-devices/cor...

It would also be interesting to know what stage you are at with CLL etc - which you could add to your bio.

Thanks.

I updated my profile. I will check with the local experts regarding the type of test they performed.

That is so helpful, RamOren. Do you know about the study they are doing in Israel, I think Teĺl Aviv, measuring effectiveness of vaccine in CLL patients? I volunteered but I live in the states!

Yes, I aware of the study. But my serology test was done independently.

Youngen profile image
Youngen in reply to RamOren

I participated in the studies being held by the hospital (Ichilov) and the HMO (Macabi). One used the Roche spike antibody kit and the other used abbot. Unfortunately I have already been tested three times and am still not showing and antibody response to the vaccine.

From what I understand the results are not very encouraging for immunocompromised patients. I hope that they will publish soon. The hospital studied a subset of 500 CLL patients so we should have detailed data

I got an antibody test 2 weeks after my second shot at QuestDiagnostics. It was the only COVID antibody test they had and it was negative for me.

PerfectPurple profile image
PerfectPurple in reply to whmk

Whmk, I assume you are in the US. Was that test covered by insurance? Do you have Medicare?

whmk profile image
whmk in reply to PerfectPurple

I am in the USA and so far Medicare covered it (I have Medicare Supplemental as well). I am not sure the test I got is the right one even though I had asked for the one that would detect the spike protein antibody. Someone else on this thread said they are going to get the spike protein test from Quest. Hopefully, they will get the right one.

SofiaDeo profile image
SofiaDeo in reply to whmk

This test you had is for the presence of the antibody from infection. It's good that it was negative, you haven't yet been exposed to Covid virus.

J1015 profile image
J1015 in reply to whmk

My test went to a lab that was initials. Something like CLS. I cannot remember specifics but I know it wasn’t Quest.

I had my second Maderna shot on Feb 1 and had the SPIKE Antibody test done on February 23. My PCP submitted it to Medicare in a way that it will cover the cost. Results should be in soon. I understand that the results might not be conclusive and regardless of results I will continue wearing a mask, social distancing, washing hands etc. But I am curious about what the test will show so I had it done anyway. I will post results next week.

PerfectPurple profile image
PerfectPurple in reply to J1015

J1015, do you know what that test targets? Someone said the antibody tests target IGG & IGM. If that is true, then it would not be useful to me because I have those tests every 3 months. Those levels are affected by the CLL anyway.

I will be interested in your results.

J1015 profile image
J1015 in reply to PerfectPurple

It measures the Spike protein antibody which is the protein in the vaccine. It is not a positive/negative test like the one that tests to see if you have had the virus. It actually gives a number that measures the degree of the spike antibodies you developed. It’s not 100% conclusive but it does give an indication if you were able to build a immune response.

SofiaDeo profile image
SofiaDeo in reply to J1015

IF YOU HAD AN INFECTION. It measures spike protein antibodies from an infection. We can't say for sure, yet, if these tests that measure antibodies From An Infection, will be the same as the antibodies generated From The Vaccine. Just because the vaccine stimulates antibodies that respond to spike protein, no one can say that these vaccine antibodies are identical to the ones from those generated from actual disease response. The molecular structure may be different enough that there isn't cross-reactivity in the test, even though both are looking for a spike protein. We need to gather more data before saying both types of antibodies respond to the test designed for post-infection antibodies.

J1015 profile image
J1015 in reply to SofiaDeo

The blood test i had conducted is not for people who have been infected. It’s specifically for those who never had COVID and have been vaccinated.

SofiaDeo profile image
SofiaDeo in reply to J1015

We would like more information on this test, please. Because to my knowledge the only tests in the US are post-infection only. A false negative on a test may not mean we aren't making antibodies. Even the CEO of (Quest, I think? It's in one of my earlier posts) has said "don't use the tests for post-vaccination results". No One Has Tested These To See If They Work On Post Vaccination Antibodies In A Large Population....except the UK who has heavily vaccinated compared to the US. And this was just published Feb 25. And it's from data the Pfizer clinical trial was conducting.

gov.uk/government/news/late...

J1015 profile image
J1015 in reply to SofiaDeo

Hi. I got my Spike protein test results back today. The lab that conducted it is called Clinical Pathology Labs (CPL). I was told over the phone that anything over the number one means that there are spike protein antibodies present. My blood showed a score of 10.37. I do not know what the maximum number is but I was so happy to find that my blood registered the presence of the protein. I know that this is not 100 percent reliable as many factors play in with the B cells and T cells, etc. I don't know the proper name of the test but maybe the name of the lab will help you find more information.

Justasheet1 profile image
Justasheet1 in reply to J1015

🎉🎉🙌

Davidcara profile image
Davidcara in reply to J1015

That’s great. Definitely better than zero. Are you on CLL treatment?

J1015 profile image
J1015 in reply to Davidcara

No. I am not on treatment. I am still watch and watch. I know that my IgG and IgA are below the healthy range but they haven't bottomed out yet.

PerfectPurple profile image
PerfectPurple in reply to J1015

That's great news. I don't think we have CPL here, but I will talk to my doc. Thanks for letting us know about the results when you get them from the doc.

I will get all the information when they call me this week with the results.

I asked my specialist if I could get such a test. She said to wait six weeks after the second dose, and it may be out of pocket. I'm hoping that it can shed some light, however dim, on my risks going forward. On ibrutinib, with virtually all blood levels inside normal range. But my immunity... Who knows?

I just read that so far, people with blood cancers only get 13% immunity from the first shot. Hoping research shows that the second shot really boosts that number. You are probably right about the antibody test being out of pocket, but might be worth it. The CLL Society is recommending a different test to measure immunity. If you go to their site I think you'll find the reference. I am 20 years on w&w now at stage 2 due to elevated WBC.

I suspect some portion of that low number is due to the treatments for people with blood cancer. I'm just speculating, but would guess that chemo likely messes with the immune system even more than, say, BTK inhibitors. I wish that the information had more gradation.

Davidcara profile image
Davidcara in reply to shoshanaz

I’m not an expert for sure. But I think if you had chemo and are in remission, you have a better chance of developing antibodies compared to being on Ibrutinib. The ibrutinib does a number on B cells, which are needed for vaccine antibodies. There’s always T cells, but it would be nice to have B cell antibody formation.

shoshanaz profile image
shoshanaz in reply to Davidcara

Hmm .. didn't think of it that way. Thanks.

Davidcara profile image
Davidcara in reply to shoshanaz

I waited 24 days post second Pfizer. Spike test negative for antibodies. Might try again in a few weeks. Had out of pocket cost was $77 at Quest Lab,

shoshanaz profile image
shoshanaz in reply to Davidcara

Thanks for that info. I really hope that the antibody levels are not actually indicative of our immunity. Darn, I wish there was some way we could really get some facts on this.

Just had this come through my email. Not CLL specific, but interesting. "COVID Vax in the Immunosuppressed: Reason for Concern"

medpagetoday.com/infectious...

AussieNeil profile image
AussieNeilAdministrator in reply to shoshanaz

As you note, the study is not CLL specific. There's more discussion on this study here:

healthunlocked.com/cllsuppo...

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