I'm scheduled for regular blood tests and hematologist meeting next week. I emailed asking for an antibody test along with my regular workup. Surprisingly to me, this is the response I got: "We are not providing the COVID-19 antibody testing at this time, due to inability to interpret results."
For 10 years of W&W, I have loved having my health in the hands of this highly respected research hospital's CLL department.
Has anyone else run into this situation?
Thanks.
Hi I haven’t run into this situation, however I have discussed this with my haematologist. He says the tests can not be interpreted as they have no cut off point yet to determine if the number of antibodies you have are sufficient or not the protect you. In this situation there is little point in my view and his of having the test, in fact the results could be misleading. He also discussed the importance of T cells in the immune system and there no research available yet to tell us how out T cells are responding to the vaccines. I have also read some research which suggests the number of antibodies alone can not determine how protected or not you are as you may have a high number but they may be of a low quality therefore not as effective in protecting you. I hope this helps.Ann
Thank you very much Ann. My guess is I'll get the same info when I meet face to face. Seems like antibodies they can test for are a small part of our total immune system.
That’s correct fishnman and they don’t want us to feel we are safe when we are not and vice versa. It’s best to stick to protecting yourself in the usual way.Ann
that's exactly what I understand aout antibody tests but it does mean that research is being done which must be a good thing 
Yes it does Rosetta.Ann
good explanation thanks ANN
Hi fishnman,
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That response has been given often and consistently by our CLL experts and by the viral disease experts.
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The tests can generate a number, and a higher number is assumed to be better, but there is no data to indicate what the levels mean.
No one know what level is "safe" from infection for "normal" immune systems or for CLL immune systems and what level will mean good resistance to a serious hospitalization for either.
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So most doctors will say that if the test provides no actionable information, it is useless.
And it may actually do more harm than good, if the patient assumes some level of immunity based on an arbitrarily chosen number and then takes riskier actions. If a fatality was to occur, then the test lab and the doctor could be held accountable.
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Len
Hi Fishnman:
I am seen by a CLL Specialist in Boston. In July he gave me the response you received when I asked about an antibody test and as such I didn’t bother to pursue the test. In November, I had another follow up appointment this time with my CLL Nurse Practitioner ( She rotates appointments with the doctor ). I told her I was concerned about the world opening up and my potential Covid exposure from my job, kids’ school, etc. She suggested I take an antibody test to see how I responded to my 3-Pfizer vaccines, which surprised me. She stressed it wasn’t the be all to end all and I needed to remain cautious regardless of the results but that the test results would provide a data point. She said that with many patients in their CLL practice taking the tests the data was starting to become more meaningful. I said OK can I take the test at the hospital and she said no. Another surprise. She suggested I use the Leukemia and Lymphoma Society antibody testing service which I plan to do. She asked that I send the results in when they are received. I figure I’ve got nothing to loose so I plan to do this. You are in the US so maybe you should do the same? I hope this information helps you.
Best
Mark
Hi Fishnman, I think, unless you're in a trial, antibody testing is not considered part of CLL treatment (tho I think it ought to be).
I noticed in an earlier post that you go to Duke for appts. There are 2 Labcorp offices listed in Durham and you can definitely get a quantitative antibody test there for $42 bucks, I think. It also refundable via most insurance.
I hope this helps. Hang in there!
I got a different take from my hematologist. She is doing her own test studies. She said the score is 0 to 100 and that anything 1 or over means there is an immune response. I got an 88 which she said was great whatever that means. I continue to mask up and am careful but I eat indoors in restaurants frequently. I am on watch and wait. She did say that only 40% of her patients had a response at all. And it had nothing to do with whether they were treated or on watch and wait. It was a crapshoot. That said I was happy to show a response.
That was nice of your hematologist to do.
That is great! My Oncologist is doing an antibody test when I go back in February for my 3-month check. This will be 5 months after my 3rd vaccine shot, and 1 month prior to my 4th.. She is also curious to see if I show anything at all. It certainly won't change a thing no matter what the number is, as far as my behavior. I will continue being home most of the time, and double masking and washing hands and sanitizing continually when I do leave my home. I do not go into any rooms with crowds etc. That won't change. Still I would like to know something rather than nothing.
Yes. I have asked for my doc to prescribe the vaccine antibody test 4 times. Each time they have refused. Nevertheless, I have had Quest Diagnostic add the test. The first 3 times they did it and simply charged it to Medicare who paid for it. Next week I am going for my 4th test.
Last I heard, Quest only does a qualitative test (showing yes/no, but not actual antibody number levels), whereas Labcorp does quantitative (showing actual levels). It might be good to clarify, since it's worth knowing how many antibodies you actually have.
Quest does give a semi-quant number but advice the number does not mean anything other than yes/no.
the levels do not indicate how well or badly you are covered against covid ..there are too many variables and the medics do not know how to interpret them any way
RosettaClapp -
Even if there were a dozen recent well reviewed papers on how to interpret the result, most medicos would STILL not know how to intrepret them, I suspect. 😂 It's all too new, and they usually only read what the test result says.
But you're currently right, it's not clear what the numbers mean yet, especially not for us with CLL.
Quest does indeed to a semi-quantitative antibody test:
questdirect.questdiagnostic...
COVID-19 Antibody Test
" Reference
1. This semiquantitative test, SARS-CoV-2 Antibody (IgG), Spike, Semi-Quantitative, replaced the previous COVID-19 Antibody Test (SARS-CoV-2 Serology (COVID-19) IgG test), which was qualitative, on March 10, 2021. Any test results from a QuestDirect COVID-19 Antibody Test prior to March 10 cannot be compared to COVID-19 Antibody Test results after March 10th, since the test is not the same."
I believe that that is identical to the one that I had in late March, that shows in the MyQuest portal as SARS COV 2 AB (IGG) SPIKE, SEMI QN:
testdirectory.questdiagnost...
SARS-CoV-2 Antibody (IgG), Spike, Semi-Quantitative
The number range is different from the LabCorp test, because it's done on a different laboratory analyzer.
PS - there is also the LLS vaccine study (which has people draw blood at Labcorp locations as well), but for the $42 savings, you trade a lifetime of private medical data to Ciitizen Data Management.
Isn’t the work the Leukemia and Lymphoma Society does worth it? Don’t we all benefit??
Not if people lose their insurance because their data is re-identified and sold to insurance companies. (There is no law in the US against doing this.) There are many other Covid vaccine trials going on and none of them require handing over a lifetime of medical data. I'm in this one: clinicaltrials.gov/ct2/show... The only reason most of us CLLers in the U.S. still have insurance (outside employer provided ins) is because of the ACA's provision for pre-existing conditions.
I believe you are incorrect please see below from the LLS clinical trial overview:
ONLY De-identified data will be made available to researchers approved by The Lymphoma and Leukemia Society.
More info regarding Citizens:
National Research Registry to evaluate real world experiences and medical outcomes for people with blood cancer, before, during, and after blood cancer treatments. The LLS National Research Registry is a real-world experiences and outcomes research registry; a collection of patient profile information and medical records data, over time, about people who have a particular disease or condition, or who receive a particular treatment.
LLS has contracted with Ciitizen (Ciitizen.com/LLS), a provider of secure regulatory grade data management services. Ciitizen will be your proxy to collect medical records directly from your healthcare providers at no charge to you. Once records are released by your provider, they are uploaded to your account in the Ciitizen secure database. Subject to policies and terms of using patient research data noted below, only patients can give permission to share these records. No third parties have access to this information unless you consent to share your data. You can also upload medical records directly into your Ciitizen database account. You can keep your Ciitizen profile if you say “no” to sharing your data for research or withdraw your consent.
It says no third parties have access to this info unless you consent to share data????
Yes, I read that too. The problem is that they are allowed to sell the anonymized data, and there is no law against re-identifying it (which can be done with as few as 15 data points)
"There is no regulation of anonymized data: it can be sold to anyone and used for any purposes" georgetownlawtechreview.org...
and Researchers spotlight the lie of ‘anonymous’ data techcrunch.com/2019/07/24/r...
Hi: The link to the Georgetown article didn’t work. It brought me to their main site but not the specific article. Data control is a major issue in the world. There is no doubt about that but I’m struggling to understand how anyone is going to lose their health insurance by participating in this study. I believe LLS is seeking all of each participant’s medical data to further its research on Leukemia and Lymphoma. When I became a patient at Dana Farber I signed an agreement to let that institute use all of my data for research without hesitation. Of all the things I have to worry about in life this one doesn’t rate high on my list but I know there is concern about medical data so maybe I’m not worrying enough.
Best,
Mark
only one point as far as my records are concerned grrr UK based
I have allowed LLS to use my blood samples to build a database for almost a year... so far there has been no knock at my door from the Federales to haul me off to prison.
Exactly and in the UK.. Its a loophole in the law and very lucrative grrr
neurodervish -
I think people don't realize how easy it is to connect the dots. Using things like the last 4 digits of a US social security number for many things makes it easy to guess the full number for many, if not most people, because the first 6 digits are not at all random. Adding a person's age and gender narrows things down well, too. There are people who specialize in data recovery for criminal cases that do this sort of thing all the time.
As a now-retired IT networking person, I have given up on the idea of high data security in general. I don't want to make things too easy, though. But I do not rest easy at all.
I fully expect that most studies do sell anonymized data. But I have not yet heard of big misuse of medical data to deny rights. Yet.
Reference:
scientificamerican.com/arti...
The Hidden Trade in Our Medical Data: Why We Should Worry
shortform.com/blog/healthca...
Selling Your Healthcare Data: Who Buys It & Why
goodreads.com/book/show/300...?from_search=true&from_srp=true&qid=RnfupwTe30&rank=1
Our Bodies, Our Data: How Companies Make Billions Selling Our Medical Record
Read the reviews there and on Amazon.
=seymour=
I'm not sure that we hand over a lifetime of data. We hand over ACCESS to whatever medical records we share, which could be a lifetime. They still have to query them.
I've worked at a hospital, and supported a dozen or more clinics. We give access to our data to many low paid people who work with insurance companies.
But you're right, we should not be penalized for pre-existing conditions.
=seymour=
I traded a lifetime of private medical data to MY INSURANCE COMPANY! 😂
Oh, and also to the NIH for a different study.
Thank you all for all the info. If the anti-body test doesn't mean enough to my specialists for them to prescribe it, I doubt it would have any usefulness rattling in my layman brain.
What you can learn from Lymphoma and Leukemia Society (LLS) antibody testing is how you compare to normal/healthy people and some idea of the reaction you get to the vaccine. Your participation in the LLS study can also probably help our country deal with the needs of immune compromised people.
My wife (a longterm APL survivor) and I did our first LLS antibody tests four months after receiving two Pfizer shots. She scored the max or 100%, I scored 11%. Four months after our third shots we again took the LLS tests, and Wonder Women again scored 100% , while my score rose to 64% of the maximum. The second part of this recent LLS test indicated my blood sample contained post Covid infection antibodies. I do not think I have been infected, but I do weekly infusions of IgG donated by other folks who may have been infected. At the beginning of the pandemic the company suppling the IgG predicted this could happen.
Six months after my third shot I did another LLS test and my score from the third shot has fallen to 52% of the max, which is consistent with the earlier studies showing a similar rate of decline for most healthy people over the same period. This decline motivated me to get a fourth Pfizer shot and I will get another get another LLS test in a couple of months.
The results of these tests have not changed how I behave in terms of Covid exposure, I still know I have to act as if I am unvaccinated, and I do.
Now here is the most important part of the LLS test participation, LLS has been using my test results and the results of thousands of other immune compromised people to lobby the US government to acknowledge and respond to the pandemic needs of immune compromised people. There is no question in my mind LLS was a powerful influence in getting the third shot approved. They are the strongest voice for us in Washington. If you want to be part of the solution sign on with LLS, other than a tube of blood there is no cost to you for the LLS tests.
Step up brother.
Very well written and persuasive. You echo my feelings. I’m going to move on this on Monday.
Best,
Mark
That’s great that you’ve been in W&W for 10 years! Which research hospital are you using?
Hi, fishnman, I volunteered for a study at Univ of Virginia to see how CLL folks respond to vaccines -- just started (or joined) re booster. They did a quantitative test for the study, and the nice young man running it did a quantitative test for me also. He said I had 11,500 antibody level and that, at 30,000 they stop counting (meaning, 30,000 is the highest they report, I guess). He said my onc nurse (I am using "onc" as short hand abbreviation for oncologist) said that was great -- but not sure if it's great for someone with CLL or great generally, or she just said that to be encouraging. But he said a lot of CLLers have 1000 or less, so I felt pleased. The measurement was done 2 weeks after booster. Perhaps you only get it done when you are part of a study? But am puzzled at the refusal you got and others on here have reported.
I asked my consultant heamatologist about antibody testing. She said it wasn't something they were able to do as part of normal blood tests. I have been taking part in a survey with the National Office of Statistics, along with monthly PCR tests and also do a finger prick blood sample to test for antibodies, so far mine have all shown negative, even after 3 jabs. My hubby's are positive. I have also submitted blood samples for Birmingham University who are looking at the effect of vaccination and CLL, we don't get results of that because it is just a research programme.
me too ..Personally like to participate in the research and knowing my results were negative after 3x jabs flags up that I need to be extra careful
HII test for antibodies monthly since I had my first jab.... antibodies only appeared after my 3 jab. I had no antibodies after 2 jabs and 2 doses of Covid. I think antibodies are only a small part of the immune response.
I tested because I had the facility at home, but even if I had had antibodies after initial jab I wouldn't have changed my behaviour. I think nationally mass antibody testing won't happen as governments are concerned it would change behaviours.
I've heard an estimate on YouTube channel that based on a study that they read, in normal people, COVID antibodies appear to be about 2/3rds of immunity, with T-cells being the other 3rd. But innate immunity is also required, and it seems like few people are looking at variations in innate immunity. We're not all the same in that, either.
There is simply no way yet to gather the data to predict response to a mutating virus in a person born with specific genes, and having been exposed to X viruses in the past. Too many variables. All they can hope to say is "X% of typical people who had antibodies at Y level didn't get symptoms, or hospitalized, or die."
I'll wait for more data from the LLS study, and check with my wife and my gut.
=seymour=
Hi Fishnman, Have a look for my post last week of a reply I got back from our NHS regarding antibodies. I had a test which came back positive but no details, so I requested more details. The answer was the same as you can read elsewhere in your replies. Basically you could have 1 antibody which is a real good 'un, or lots of antibodies which are weak and not much use. And they disappear after a while anyway. So any quantitive results are fairly meaningless as I understand it. The immunity we get from our T cells is more important to us, but is not routinely tested as yet. Keep your guard up ! Freddie.
I encountered a similar problem at Duke University Medical center. I went to a nearby LabCorp office and got the test. It cost me $10.00. It is free if you have a Doctor set up the test or prescribe the test. Test 164090. Best of luck. It was reassuring to find out I have antibodies, after the third shot. I still got Covid. I got the antibody infusion on the third day and I got much better very quickly. I am 69 YOA and have been W&W for 4 years.
Isn’t the test you note to determine if one previously had Covid in the past? I thought it was a different test to determine if the vaccine was effective.
Thanks,
Mark
This is very reassuring news. You have CLL. You have had 3 Covid vaccinations. You contracted Covid. You received monoclonal antibody infusion. You recovered with no complications. Good for you!!
Just had my three-month checkup at Mayo Clinic in Minnesota, USA, where my hemotologist, a noted CLL expert, readily agreed to an antibody test as part of my labs. The number was at the top of the reporting range, and he actually sent me a note to tell me how pleased he was with that number. Of course, he reminded me, as always, to be vigilant in taking precautions to remain safe.
The University of Birmingham (UK, not Alabama) is running a trial of antibody response in CLL patients. The findings so far are that if you are male and on a BTK inhibitor, your likelihood of producing measurable antibodies is very low. They don't provide individual results, only pooled and anonymised data.
I've had two anti b' tests (the results were no antib's) all the test can do is measure yes, you have or no you don't ,at it's simplest level. it's a qualitative not quantitative test here in colorado,Not sure why they would tell you this where are you?
I had the same reply from my hematologist as well as my GP. Fortunately I have a wonderful dermatologist who is tuned in to immune compromised people (she is immune compromised and her mother has CLL!), who gave me an antibody test right there at her office. I had the quantitative test that gave me a pretty good number. This was about 6 months ago, and I plan to ask for another one since I’m curious how I’m doing after my Moderna booster. It’s infuriating that hematologists aren’t being more helpful.
I am part of a COVID vaccine study that checked my antibodies after each shot…I’ve had 3. Results showed zero antibodies. I am completely floored. Afraid to go outside. At the moment trying to get over a 4 week flu…yes I got a flu shot. My family dr. says not to worry but I’m not convinced. Seeing hematologist next week. This COVID is destroying me.
Hello All,This is a thorny topic but I have been studying it because my husband had a near death reaction to the Moderna booster when it was full strength - a third shot in other words. It is now given as a booster as half dose obviously because there are more people out there with a similar bad reaction. His immune system had enough antibodies on its own and from the initial shots in January and February and when he got the booster his immune system went into overdrive and created more and more antibodies That is the current theory of the doctors we are working with. He went into a Multi Inflammatory state and it attacked all his systems. He was in hospital where they flooded him with our friends - steroids - to save him and then later he was in a rehab facility for weeks learning to walk and talk again etc. He is home now and still receiving treatment. They predict he will heal but we are looking at another 6-12 months. BTW my husband never had COVID ever and he still has an unusually large number of antibodies!!
The point re: antibodies is that the research and hence recommendations about them and how many is enough is not forthcoming yet. I was tested for them in May to see if the prednisone had lessened my creating them. I had 2232 which was comparable to most of the people in my doctor's office. He had his staff of 41 tested. The Bio Reference Lab and the Labcorp tests in US are comparable. The Quest usually only shows antibodies from having had COVID not from vaccines. Somehow I tested positive in August - asymptomatic throughout - but my doctor gave me monoclonal antibodies to be safe and I was fine. But I cannot get the booster after that for 3 months which it was Dec 1st. My doctor gave me another antibody test and I now hav 1171 left. He wants me retested in a month before I get a booster. He is using his own logic, and the testing of his staff to say that I still have "enough" antibodies rather than risk what happened to my husband. This is my choice as well. So no there is no definitive number of antibodies but it is some information for us.
Earlier this year, I had read a scientific report from Univ of Ca that prednisone would kill all antibodies made by being vaccinated which devastated me so my doctor added me to his antibody tests. And I had 2232.
I think we have to gather information ourselves and have some say in what we decide to do. The world has turned into vaccers and anti-vaccers and that has left out our own logic and advice from trusted sources. I believe in science and in vaccines and boosters still but we must see that the system of big science is not perfect and we have to also think for ourselves.
I hope this helps and not just frightens you but as we climb our way out of this, this is how my husband and I are thinking.
Safety to you all,
Blue Girl
I asked my consultant about antibody testing as I have low lymphocytes and T cell count. She explained to me there is a difference between the tests that look for antibodies after a person actually having Covid, and a test for an immune response to the vaccines which only looks for the spike protein. Different tests. As it happens she phoned me last week, on the day I had my 3rd primary vaccine doze of Pfizer here in the UK, and I will be able to have a test for the spike protein on 22nd Dec once enough time has passed from the vaccine for it to have taken effect, if it is going to. The result will not tell me if I have sufficient protection against the virus though, only that I have had an immune response or not, not whether it is an effective one. Still useful to know especially if it is negative.Apart from dog walking and meeting friends outside back in the warmer weather here, I have largely been staying home and seeing no one since March 2020. I hope to goodness this new Omicron variant turns out to not be too severe as I am definitely getting to the end of my tether living this isolating life.
Happy Christmas everyone, keep safe. x
I see a local Dr. along with another in a larger city with a stronger reputation. The local Dr. Said they don’t do the test, but the other larger hospital did. Unfortunately, both times.After 2 Pfizer shots then again after booster, my test showed no protection. I’m glad I did it, as I was feeling a false sense of security that could have been dangerous.
I think what that means is that there is no benefit in knowing antibody level as they do not use the results for anything beneficial. I have paid $50 to have mine checked. Gives me a value (0.03) which is basically nothing. Dr. Jen Ashton on TV. Says there isn’t any benefit to doing the tests since they don’t do anything with it medically. Insurance will not cover test.
Hi, I was able to get an antibody test at Stanford. I was getting regular bloodwork done after my sct in October and they ran it then. I was happy to see I had antibodies from my January &February vacs. Have had the booster since and don't know what effect it has had as of yet.
A lot of negative feedback on antibodies tests … but I’m on the other side of the fence, that tests have some worthy value, at least per my story …
My CLL doc recommended I volunteer in the LLS antibodies testing Study back in April 2021 and getting the LabCorp tests results was maybe a lifesaver for me (and for my wife who was dx w/serious cancer at that time). My first vaccine was the J&J shot in early March and I scored 100 spike antibodies per LabCorp test about 2 months after the shot. Discussing scores and what they meant with LLS Study Dr Salzman, I realized mine was a “low” score. Advocating for myself to find “anyway” to get to what Dr Salzman described as a healthy people score (>2500) to protect me better so I had a better chance not getting covid and thereby (much worse) not give covid to my wife, I went rogue (w/my CLL doc ok) and got 2 shots of Phizer (start over I figure, what did I have to lose trying? and had a mission to do my best to protect my wife from getting covid).
Luckily (very thankful), my antibodies test in June (and several more bi-monthly tests up to now) all showed >2500 scores from that duo-Phizer shot mega-booster way back in May.
So getting and monitoring antibodies test scores worked for me. Finding out in October that the J&J shot is only good for a couple months … validated my wild guess to go rogue and get antibodies ASAP back in May and not wait for Gov to tell me in October it’s finally ok to do so. The antibodies test score pushed me to get additional vaccine shots in May versus not knowing my antibodies and waiting till October to get a booster. That’s 4 months of antibodies I was able to get that I wouldn’t gave gotten all because I was testing for antibodies. So yeah, I’m pro-antibodies testing.
It’s true, nobody knows the antibodies scores “level of protection” … but Dr Salzman noted to me there are basically 3 buckets of scores per the LLS Study; none, low, and really good. If one can get really good scores, that’s gotta be a plus in the fight against covid.
I’m thankful for the LLS Study opportunity and that the data/knowledge drawn out of it will hopefully someday help us all.
Good luck on your decision. Like many say, it is prudent to stay strong and wise on covid self-protection whether having antibodies or not. Each person’s risk level choices and health situation is unique, that’s one thing we do know. May you be well fishnman!
My local hematologist will not order the test for same reasons mentioned above. When I saw my specialist at Ohio State in September ( had third Moderna vacc. in August) she did order a test which only states yes or no for presence of antibodies, but no number given. Why, number is meaningless at this point until more research is done, I was told. My test result was positive. This allows me to hope but does not allow me to alter my behavior.
Thank you all for the overwhelming amount of info and energy you put into this topic. It is truly appreciated. Be well, all!
My husband with CLL got his spike protein antibodies tested at Labcorp again. Four months after three Pfizer shots he had 94. Four months after three Pfizer shots I (no CLL ) got >2500. He is going to get a fourth shot -- and we think he will get Moderna this time.
COVID antibody test
Antibody testing
First COVID Antibody Test
COVID and (lack of) access to monoclonal antibody treatments
