Topic: Access Biological (they may buy your blood)..An experience!
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Recently there was a thread where this company could be contacted to see whether they wanted to buy your blood or plasma for lyme and other conditions.
I emailed my most recent tests and they called and sent me to the local lab for a blood draw.
Within a few days I get a nice call saying my EIA (ELISA) was negative and that my western blot was negative.
I asked for the results and got a one-page summation, stating my EIA titre is such-and-such (below the threshhold) and the western blot is "negative."
I emailed the helpful person Robert there, who's been quite nice all along. I explained that I'd like to see the actual western blot, i.e., the results band-by-band.
He said the lab wouldn't report the individual bands if the EIA was negative.
??
Now, clearly they read the bands -- how else would they conclude the test was overall negative?
Obviously there is a report in existence on the bands, but Robert is woefully lacking in understanding.
I tried patiently to explain to him (nicely, too, I might add) how one might have significant positive bands while still having an overall negative CDC blot. He repeatedly kept making really stupid assertions... to wit:
quote:Michelle,
Thanks again for your concern, however the test that was performed was the one that we do in order to qualify you for the program. It is also the one that the CDC uses to determine if you are considered positive by their standards. Since the Antibody test came out negative (which would only be positive if you met the requirements of the WB being positive, not one or two bands, but enough to have a positive result) the western blot according to this test will report out as negative. The lab is not going to report out the bands on this test due to the negative result on the EIA result. As to your interpretation of "a person having significant positive bands and having an overall negative WB" is relevant, however that being said if that is the case then the antibody test would be positive and in your case it is not. As to your question about bands 31 and 34 I am not sure if they do, but again this is not what we look at. We look at what the CDC considers as being positive by their guidelines. The lab will not release any information to you as you are not the client for the account, they are only going to refer you back to us and what you are asking for is not available.
Am I on crack, or is this person for real?
How can anyone be this obtuse?
When I politely pointed out to him the errors, he sent me a terse email saying 'this conversation unfortunately will need to end.'
It's a glimpse back to Duck-ville. Even a small child could understand, but not Robert.
GRRR.
I am very annoyed that he will not even bother asking his lab for my complete results. Instead, he pretends to know what he is talking about, demonstrating how very little he knows.
Gahhhhhh!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Hi Michelle,
I think Robert "gets" it. But he is saying that it doesn't matter for what Access Biological is looking for.
Still, I would think you would have a right to any info that the lab sent them. Does their web site give any details regarding your rights?
When I contacted Access last year, they were interested initially.
I even told them my absolute positive Quest lab results for Bart and the Sonoma County absolute positive for Babs WA-1.
They took my history over the phone. Then a few days later I received an email with them saying "thanks but no thanks."
They hadn't even asked for copies of my existing TBD lab work.
I would like to talk with people that actually get their blood used by this company. Or, rather, perhaps I should say people that actually get paid by this company.
There must be some benefit to Access Biologicals for them to put all this effort and time into screening people--but to then not follow through.
posted
Michelle, do you know if they can now sell your blood/plasma as a negative control (for test kit manufacture)?
"Access Biologicals offers specialty antibody positive and negative plasma available in single donor units that can be drawn to meet your specification."
Did you sign a release? Contact your Medical Review Board and ask some questions about getting your results and any options you may have. Or contact your State Atty. General. Maybe it's a scam. Did you check the BBB on them?
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Golly; I can't imagine they could use my blood for a negative control after a CDC positive history!! That would seem pretty unethical.
I was just hoping to get the FULL results. The word "negative" on a western blot means nothing, as we all know too well!
Since he did send me the cover page that says "Western Blot - Negative" -- I am going to call the lab. (Their number is on there.) I am going to ask if a report exists enumerating each band. Of course it does.
However, statements like "if any of your western blot bands had been positive, then your ELISA would have been positive" really pi$$ me off.
And then to argue with me about it like he's speaking from the voice of authority.
Someone in the business of bloodwork and tests ought to know better.
When I confirm with Quest that the report does in fact exist, I am going to write his supervisor. Hopefully he will educate his staff.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Michelle,
If you have the cover page, does it have any reference number?
Even if it didn't, if it has your name on it, any of your doctors should be able to get a copy of the full report faxed to them.
Your doc may have you sign an 'authorization to release records' or something similar giving the lab you're okay to release the info to your doc.
Now, at the risk of sounding paranoid here, what Kayda said, about your 'negative' result not being a true negative . . .
What if they should use a Lyme patient's blood (who tests negative) as a negative control? Would that give false "negatives" when using that control to test the blood of others possibly ill with Lyme?
I wonder if some similar scenario is responsible for a lot of the false negative elisa tests that are offered out there.
That is one reason why thyroid TSH tests are so inaccurate. They take a random group of people (many of whom could be low thyroid but were never diagnosed as such), get an average TSH range of the group, and then state that all readings that fall within that average range are "normal."
quote:Originally posted by tabbytamer: What if they should use a Lyme patient's blood (who tests negative) as a negative control? Would that give false "negatives" when using that control to test the blood of others possibly ill with Lyme?
I wonder if some similar scenario is responsible for a lot of the false negative elisa tests that are offered out there.
I think that's exactly what's been happening for many years, that's why I asked. And it's not just about false negatives, but about the claim that tests are reliable.
Test kits are evaluated based on people (controls) who've already tested neg. and pos. in the past from places like this. We know the ELISA misses a huge number of people with Lyme, but that's not their concern.
So... manufacturers can claim a test has 99% sensitivity if it picks up 99% of their positive controls, and highly specific if negative controls (like Michelle???) test negative. Then they get to tell all the doctors the test is nearly perfect... and the doctors believe it.
Posts: 621 | From US | Registered: Jun 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hey Tabby, WA-1 buddy!!
I agree it's a good idea to have my doctor call to get the full results. But I'm gonna try first myself, at least to establish that they DO report each of the bands.
There's an 800 number listed on the results sheet.
Of course, we know since it's Quest they don't even report bands 31 and 34. I was *** on one of those bands, can't remember which.
I would hope there's enough totally negative people out there that they wouldn't need to resort to using blood of someone who's had a CDC positive test in the recent past!
I just really dislike stupidity and "officials" mouthing inanities in an authoritative fashion when they clearly don't have a clue what they're talking about...reminds me of a lot of doctors!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
You know once they paid for it they can do anything they want with it
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by treepatrol: You know once they paid for it they can do anything they want with it
How true, Tree.
They didn't pay ME, of course.
But as they pointed out, they paid the lab to test the blood and therefore the lab won't talk to me, only to THEM.
I can't imagine why they would object to giving me full results. It's no skin offa their hide!! The point is, they are arguing with me that no individual band reporting was done, when I know that's false. Access Biological said, "..since the antibody test came out negative...it would only be positive if you met the requirements of the western blot being positive..."
Claiming that a western blot must be CDC positive in order to have a positive ELISA is insupportably stupid!!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
quote:Originally posted by Michelle M: Access Biological said, "..since the antibody test came out negative...it would only be positive if you met the requirements of the western blot being positive..."
Michelle
I wonder if anyone at Igenex would be willing to talk to you regarding the accuracy of Robert's statement?
Now this might be of interest to you: When I was working (I so miss working ) when the office ordered my first Lyme Elisa from Quest, we got back only the Elisa titer.
So, I called (from our office) and asked "what about any WB results?"
Quest said that they don't run a WB unless the Elisa is positive. OR, unless when we order the Elisa, we specifically request for a WB to be run whether or not the Elisa is positive, OR we just order the WB.
So, we drew more blood just ordered the WB regardless of the Elisa titer result.
We got back the lab results that showed all the WB bands (at least the bands that Quest runs) even though my WB result was a CDC negative.
So, at least as of 2002, Quest would spell out the bands for you if you asked them to at the time you sent in the blood sample.
If they ran the bands, they would report the bands regardless of the result.
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