Antibody Testing After Getting the COVID-19 Va... - CLL Support

CLL Support

23,253 members39,949 posts

Antibody Testing After Getting the COVID-19 Vaccine: What to Know If You’re Immunocompromised

Jm954 profile image
Jm954Administrator
30 Replies

I know we've discussed this endlessly but I thought this article was quite good.

As it says, "there are risks in trying to interpret these antibody tests yourself, because even doctors aren’t sure what the results could mean. There is still a lot that experts don’t know about how the vaccine works in immunocompromised patients, how to interpret the results of antibody tests after you get vaccinated against COVID-19, and what steps could be taken if you didn’t confer enough protection.".

More here: creakyjoints.org/living-wit...

There isn’t enough data on immunocompromised populations yet to determine how they may react to the vaccine, but experts still believe you’ll get some immunity — which is far better than none — if you are immunocompromised.

More here - 6 Things That Don’t Need to Be ‘Perfect’ for Immunocompromised Patients to Benefit from the COVID-19 Vaccine

creakyjoints.org/living-wit...

Jackie

Written by
Jm954 profile image
Jm954
Administrator
To view profiles and participate in discussions please or .
Read more about...
30 Replies
Newdawn profile image
NewdawnAdministrator

Two of the most useful and informative articles I’ve seen on the subject thanks Jackie 👍

Newdawn

Shrink profile image
Shrink

Easy to read and very helpful. Thank you !

johnl profile image
johnl

Good read Jackie

Panz profile image
Panz

Excellent site. I did enroll. Panz 🙏🙂☘️💕

Pin57 profile image
Pin57

Good articles Jackie, thanks for posting.

No doubt struggles with clearly understanding the antibodies test results abound by many (me included!). I’ve received good help/advice from my docs on interpreting the results, recommend to always have them weigh-in on the results if you get tested.

I’m in the US - in the LLS Study group - n they ask I get antibodies tested every few months. The LabCorp tests are one of the better tests, yielding quantitative results as the first article notes: “You want to make sure you’re getting tested for antibodies to the spike protein, because that’s what you would expect to get after the vaccine,” says Dr. Adalja. “If you had a COVID-19 infection, either of the tests would be positive because you’ve been infected with the whole virus.” “ Further it states…

“Some tests look for antibodies to both the spike protein and the nucleocapsid protein to distinguish between vaccination and infection.”

The LabCorp tests I get for the LLS Study does all the above and is helpful (IMHO) to know that “if” you score positive on the Spike Ab line of test results and negative on Nucleocaosid line of test results that it indicates (a) the covid vaccine is giving you the antibodies “score” and (b) you have not had covid. Good info to know!

The article didn’t address …. measuring/monitoring aspect of antibodies, if they are waning (getting lower) as a potential guide the antibodies test might provide. IMHO, I think it is a useful guide of what’s happening spike antibodies-wise and provides one with information regarding maybe when to go get a booster shot versus relying on the general advice to the masses (wait “x”months). We CLLers may need a booster shot much sooner than “x” months … or maybe even later than “x”months.

The tests I get if you elect to pay for them with good insurance cost me nothing in US. Without insurance it’s about $50 cost. So in general it’s an inexpensive or “free” test if it’s available where you live.

The antibodies results (in my opinion), are useful to know with understanding that the “score” provided by the LabCorp Quantitative tests “do not indicate the level of protection”. However, having several conversations with LLS Study researchers, the scores “are” important as they research further what they tell, etc. Waiting to hear further results n details on that.

As you can tell, I’m on the side of the fence that finds the antibodies tests information useful for “indications”, “trends”, and providing “some knowledge” versus nothing. It’s not perfect, and it does have its limitations, as the article clearly points out.

Thanks again for posting.

lexie profile image
lexie in reply toPin57

Am also one who values the testing. My antibody responses to the 3 vaccine doses has been educational in understanding how I am affected by vaccines in general. I have had a nonchalant attitude toward the flu and pneumonia vaccines I received since my diagnosis of CLL. I had no idea that my immune system in W&W was barely functioning with vaccines. I am going back to 2 flu shots per flu season because I just cannot trust that I made antibodies to one. With the Covid vaccine I made finally made antibodies with the 3rd dose.

22011 profile image
22011 in reply toPin57

I was in the LLS study but was notified that it had closed almost a year ago. How long have you been participating?

Pin57 profile image
Pin57 in reply to22011

The LLS Study was closed at the end of Dec 2022, my last antibodies test, under the study, was done right before the study was closed.

I participated nearly 2 years, March 2021 - end Dec 2022.

I recently went ahead and paid ($50) for latest LabCorp antibodies test (early Oct 2023), to see how much the antibodies wanned, out of curiosity mostly.

Hope that answers your question.

22011 profile image
22011 in reply toPin57

LOL I didn't notice that I was reading posts from 2 years ago. But thanks for answering. Although my antibody response was very very low I do believe something is working, whether it's T cells or something else, because I haven't caught Covid (yet). I am careful about masking and social distancing whenever possible. If I may ask, what did your recent test show? Had they waned or held up?

Pin57 profile image
Pin57 in reply to22011

So test in late Dec 2022 showed a lucky >25,000 U/ml of spike antibodies.

Before my 7th Covid vaccine Pfizer shot last week, I LabCorp tested at about 9,000 U/ml. A 65% (or more %, since previous is unknown amount was above 25,000) waning percentage.

Still 9,000 U/ml is a lot in the ole gas tank. Have never had covid. Just lucky? Or does vaccinations help? I believe they do no matter if you get high antibodies or not. Studies have backed that up.

22011 profile image
22011 in reply toPin57

Wow you had an amazing response to the vaccine. Hard to believe you are immunocompromised. What are your IGG, IGM and IGA levels?

Pin57 profile image
Pin57 in reply to22011

A “lucky” is that a proper word? Q13, mutated CLLer early W&W. CBC numbers mildly going up each year (Abs Lymphs at 7.5, WBC at 14, only out of range CBC numbers, quite low for CLLer) n below treatment type number ranges, plus I’m generally feeling well (no nodes, no fatigue etc) knock on wood.

My CLL doc doesn’t normally test for Igs until treatment is needed… but out of my sheer curiosity he allowed me to get tested for IgG in Dec 2021 n I scored a 1047 (within 640-1540 range). Don’t know my other Igs.

Yes, a lucky situation CLLer at this point. Just happen to be.

Have not always been so lucky health wise in my life, so do emphasize to those that struggle with their health situation. Cancer sucks no matter what case or stage.

I know I could easily be like so many others on this forum n not generating antibodies from Covid vaccines (maybe due from being in treatment or per post treatment stage).

Each one of us is unique in this CLL journey, that’s for sure.

How are you doing 22011? Hopefully, well.

Take care

Jonquiljo profile image
Jonquiljo in reply toPin57

My CLL Dr. never seemms interested in my cell counts (lymphocytes are about twice yours). Instead she orders an LDH test each time and seems more concerned about that.

My LDH is always below the “normal range”, and she seems to think that is good enough to not be worried about my CLL. I never really followed her rationale, other than LDH correlates to how active the lymphocytes really are.

Anyone else seen the same in your CLL Dr.?

Pin57 profile image
Pin57 in reply toJonquiljo

That rationale does seem odd given your LDH number.

I had to look up the full meaning and what LDH test checks out etc. I’ve never had mine tested per any docs I’ve had.

I hope life is going ok for you Jonquilijo, knowing your wife passed… that’s gotta be rough on ya. Hang in there and hope better times for you ahead.

Jonquiljo profile image
Jonquiljo in reply toPin57

Thanks for your thoughts.

The best I can ascertain is that LDH (in her mind) is a measure of inflammation that would be indicative of a very active CLL progression. No inflammation = indolent CLL supposedly.

I am generally not given a whole lot of time - so I’ve been taking her at her word -very unlike me to do!

Pin57 profile image
Pin57 in reply toJonquiljo

Yeah you are not one to not ask questions! I like that about ya.

The reduced time with doc appts, I’m starting to see that more n more with docs. It’s like we are on a stopwatch timeframe …. “oh sorry, your time is up!”… then I’m like whaaaat????

Sucks, that is!

Jonquiljo profile image
Jonquiljo in reply toPin57

I was talking with my PCP this past week and he said that medicine is getting terribly short of Dr’s these days - pretty much everywhere. All specialties too. I find from personal experience that to even see an orthopedist about my knee can take two months.

Now granted I’m in the SF Bay area where life is horribly expensive. But He seemed to indicate that this was a phenomenon everywhere.

22011 profile image
22011 in reply toJonquiljo

I live entirely across the country from you on the Chesapeake Bay and yes, we have the same problem. I heard a discussion about the doctor shortage on NPR recently. It was said that the Federal Gov't supports residency programs and that the funds for this were cut back starting in the Reagan era. So residency programs have been dwindling and newly graduated doctors can't find openings. They can't practice until they have been through a residency so we have a situation where there are MDs graduating into a void and we can't find doctors.

Jonquiljo profile image
Jonquiljo in reply to22011

I think thats a major problem for sure. I really think that it is likely a big source of the problem.

Another problem is physician pay. Someone gets out of medical school -in debt and just looking to start out. From the salaries I’ve seen, a good chunk of newly minted MD’s could not afford to live in areas such as mine, or yours too.

Unless someone has good luck, they will not make enough to set down roots in an east or west coast setting. In addition the hours are too long and the job tough enough to make things work.

Eucalyptus22 profile image
Eucalyptus22

Thank you Jackie. The article 3rd dose v booster is particularly clear in that no decision has been made about a booster (or 4th) dose for the immunocompromised. However, it says that a 4th might happen.

Good to have this information

I look forward to being jabbed!

😀

bennevisplace profile image
bennevisplace

Thanks, I especially like the first article. Apparently I'd already bookmarked it!

mrsjsmith profile image
mrsjsmith

Thank you Jackie.Regards

Colette x

Peggy4 profile image
Peggy4

Really good, easy to understand, articles.Thank you.

Peggy

Name-1 profile image
Name-1

Thank you very much,Jackie.😍

CLLerinOz profile image
CLLerinOzAdministrator

Thanks, Jackie for the great articles, especially for the first one which is really reassuring for those of us living in places where antibody tests aren’t recommended or readily available. After reading articles like it and talking to my specialist, I no longer feel the urgency I might have felt to be tested.

Fran57 profile image
Fran57

Thanks for those Jackie.

Stay safe,

Fran 😷

johnl profile image
johnl

Jackie, do you know if the Monoclonal antibodies from Regeneron are spike proteins or nucleocapsid protein antibodies? Did I say that right?

john

Jm954 profile image
Jm954Administrator in reply tojohnl

Hi Johnl, you said it right :) but I don't know I'm afraid. Does anyone else?

HopeRose profile image
HopeRose in reply tojohnl

Hi Johnl, Two and half months after my 2nd vaccine my Semi-Quant Ab total was 138. A month after that my husband tested positive so I had Regeneron mAb infusion. A month after that my semi-quant total was >2500! The nucleocapsid test was negative meaning I didn't get his Covid infection and the test can tell the difference between mAb and SARS-C0V-2 infection antibodies.

lexie profile image
lexie

Thanks, this was great to read. So very practical without being alarmist.

Not what you're looking for?

You may also like...

Follow Up on Dire Warning

He Y'all! My oncologist replied, "don't panic." She also shared a link that she says will be...
Jungle-Jim profile image

Leukemia & Lymphoma Society COVID-19 vaccine safety data is now available ; vaccine antibody data expected later in 2021

On behalf of the Leukemia & Lymphoma Society, thank you again for joining the LLS National Patient...
lankisterguy profile image
Volunteer

Living in the USA with CLL and want to know where to sign up for your COVID-19 Vaccination? A State-by-State List

From MedPage Today: Every state has posted information on its plan; many (though not all) list...
AussieNeil profile image
Partner

CDC OKs COVID-19 vaccine, allows older adults and immunocompromised adults to get second dose Bi Valent vaccine on Wednesday, April 19, 2023

CDC simplifies COVID-19 vaccine recommendations, allows older USA adults and immunocompromised...
lankisterguy profile image
Volunteer