POZ Community Forums
Main Forums => Living With HIV => Topic started by: weasel on August 31, 2008, 07:44:14 pm
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HULLO ALL :),
I usually do not start a post , I think ?
Anyway , last Wednesday at the Saint louis V.A. I asked what my t cells were .
I asked my psychologist ! she told me they ARE 1245 !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
then I asked about my Vireal load !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The doctor told me my test came back NON-REACTIVE , HIV NEG . !
OK this is very odd .
Who can spread some light on this ??????????????
I am now more confused than ever !
thanks , karl , aka weasel
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Well it wouldn't be the first time someone has been wrongly diagnosed with HIV. How long has it been since you've been "positive?". When did you get your 1st diagnosis?
I remember when I was recovering from PCP I was on the boards here one day when Ann and our Irish friend from NYC (I forget his name but Alex(Allopathicholistic) (http://forums.poz.com/index.php?action=profile;u=123) knows who I'm talking about and so does Ann) were talking about a veteran from the VA who had been wrongly diagnosed. I had just read the story in the SF Chronicle about some guy from Hayward (a suburb of San Francisco) and that's who Ann and this guy were talking about. Anyway you can read his story HERE. (http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2004/08/28/BAG028FO841.DTL&hw=hiv+false+test+results+va&sn=001&sc=1000).
If it turns out you've been wrongly diagnosed, you just might have a case. As I recall the guy from Hayward filed suit against the VA and won a pretty good settlement.
robert
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Karl -- I do not believe a Viral Load test can have a "non reactive" results. It only produces a VL count, or a "undetectable" result (i.e. <50, or <48, depending on how sensitive the test is). Unless your doc ran another HIV antibody test, you wouldn't get a "non reactive" result.
Please confirm with your doc if he ran an HIV antibody test.
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hullo peter !
YES my doctor ordered the wrong test !
the doctor ordered an HIV antibody test !
When I asked about my viral load , she told me that the wrong test was ordered
and moved on to a defferent subject , I.E. my IMPETIGO , that has plaged me
for 4 years now .
She just said she would have the right blood test done .
and NOT to even think of what that ( western blot ,antibody test said )
I am going to get ALL copies of my medical records from dec 2007 .
something is not right !
thanks for your reply !
I do appreiciate your concern and opinion !
karl
ps . can a antibody test show non-reactive ,to an HIV pos person ?
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Hi Karl,
Could you please tell the latest situation with your test results. Has it been clarified now?
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Why, of all topics, is this still in LTS? This forum is for people who have lived with the virus forever. The OP seems to not even be poz.
WTF?
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Why, of all topics, is this still in LTS? This forum is for people who have lived with the virus forever. The OP seems to not even be poz.
WTF?
You're right, Bucko, I never even realised this thread was in LTS - I normally use the "recent unread" page instead of going into individual forums and never noticed. I've moved it to Living, a more appropriate place for it.
Karl, it does indeed seem odd that you got a non-reactive WB result - whether the doctor accidentally ordered the wrong test or not. If you're hiv positive, the antibody/WB tests will always come back with reactive (positive) results. You might want to have an ELISA and WB run - perhaps at a local testing center if your doctor doesn't seem to be interested in getting to the bottom of this strange result. Let us know what happens.
Ann
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hey bucko ,
MY issue is NOT resolved !
V.A. is hard to deal with !
IS 1980 A LONG ENOUGH TIME TO BE FUCKING AROUND WITH HIV
THAT TURNED TO AIDS IN 2004 ?
WHERE DID YOU READ I WAS NOT A LONG TERM SURVIVER ?
sorry if I put my post in the wrong place .
please forgive me , karl
not a forum queen !
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hey bucko , no offence to you !
i found your post RUDE beyond RUDE !
oh what is a OP ?
please use words OLD people know .
thank you :)
karl
op ? no clue ......................................
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op = other person. It's not meant to be rude.
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:P I thought OP meant "original poster"
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so very confusing !
i do NOT understand all of it .
sometimes I just POP
life is hard enough without trying to PRY labs out of a doctor
i will post as soon as i get my next labs ................................
THEY HAS BETTER BE RIGHT , no good labs from JANUARY ????????????
best to all , karl
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I really hope you can get this figured out soon. It must be so frustrating with it up in the air.
Hoping for a speedy resolution to your mixed message.
Auspoz
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:P I thought OP meant "original poster"
That too. ;)
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:P I thought OP meant "original poster"
It does
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I HAVE NOT LOOKED AT THE " I JUST TESTED POZ" FOR A WHILE
VERY INTERESTING TO READ THAT SEVERAL POSTS INDICATED
THAT THEY ALSO NEVER DEVELOPED ANTIBODIES TO HIV :o
SEEMS LIKE MY SITUATION IS JUST ANOTHER ODDITY ?
BUT I DO THANK THOSE OF YOU THAT CARED ENOUGH TO ASK :)
LOVE YOU GUYS ,
KARL
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Karl,
In your posts you identify as a "slow progressor" and 18 years HIV+ before AIDS diagnosis.
Unless I misunderstood your posts.
In the post to a newbie, you say you have no antibodies... I think is related to your recent non-reactive test.
http://forums.poz.com/index.php?topic=23781.0
However, it seems to me that if you were a "slow progressor" your immune system mounted a VERY effective control of HIV for many years. And if you were previously tested HIV+ (???) then at some time the past you had antibodies? How do you know you have had HIV for 18 years if you never had an HIV+ result??
I am confused.
Did you get an answer yet as to why you are recently "non-reactive"???
Anyway, in the case of the newbie post, and my situation, our bodies have very little if ANY ability to control the virus and we are in the "VERY FAST" progressor category - rare - and without HAART would have full blown AIDS within months or a year. I think that is what the newbie poster meant by "no antibodies". At least that is what I meant.
Hey, I also was on a severe diet when I seroconverted... Strange..
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I am completely lost here.
Non reactive means no hiv antibodies ? And still (some?) loss of T4 cells due to HIV ???
Does this mean that there could be numbers of people out there with an hiv infection despite negative test results ? The virus has managed to elude current testing methods, and is spreading unnoticed ? If that's the case ..........I don't even dare to mention out loud what this could mean.
Please tell me someone made a mistake somewhere along the way !!!!
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I'm with Grasshopper here. I don't understand this at all.
Auspoz.
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yes GRASSHOPPER THIS DOES scare the crap out of me !
But FACTS do not lie !
and the facts have not changed .
I HAVE no ANTIBODIES and the V.A. does NOT really care to find out why , even thou
the Saint Louis V.A. is a TEACHING hospital
I find it curios ................................................
I started AIDS with 101 T-cells , of witch I have learned over the years ARE really CD-4
and NOT T-cells at all
My T cells are over 1,200 , BUT my CD-4 is now up to 399 !
I have to be on SSDI for 2 years before medicade kicks in ,sooooooooo
NEXT October 2009 , I can use PRIVATE DOCTORS AND HOSPITALS , maybe i will
find someone who cares enough to delve into this odd phenomenon
Be careful ,
Karl
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Karl -- I've removed your posting in the "I Just Tested Poz" thread where you repeated this claim about having no antibodies. Please don't repeat this in other threads.
The reason I did this is because you DO have antibodies to HIV -- your claim otherwise is not medically possible. I'd also like you to not repeat the claim that you were nonreactive on a Western Blot test unless you can have that test done again and confirm the results.
Fact is, lab errors happen every day -- the result your doctor mentioned could well have been a lab error -- a result from someone else's lab test for instance. That's why doctors almost always confirm something unexpected or unusual before making a final pronouncement or taking any actions based on a nonsensical result.
In addition, there was no reason to order this test to begin with, and as you explained it, "your doctor accidentally ordered the wrong test" (they had planned on ordering a viral load test instead). This might also be evidence of a lab error -- if your doc actually ordered a VL test, but got back a Western Blot test, then it sounds like two patients' tests and results got switched (another doc is probably wondering why his patient's WB test came back with a VL result instead).
Bottom line, this was very likely a lab error or doctor's error, and you need to either retest, or drop it. Unless you retest, I'm asking you NOT to post in other threads that you have no antibodies.
Thanks Karl.
Peter
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Karl:
I'm having a difficult time making sense of your situation, as it's not clear what the facts are here.
But first, I'd like to clarify something. CD4 cells are actually a subset of cells known as T-lymphocytes, often referred to as CD3 cells on laboratory reports. Thus, on a lab report, your CD4 count is reported as the "CD3+/CD4+ Absolute" -- the estimated number of CD4 cells in a milliliter of blood. However, in a lot of what you read -- including in the AIDSmeds pages and in the Forums -- the terms CD4 cells and T cells are used interchangeably, as it really is the "CD3+/CD4+ Absolute" number that matters most.
Now, in your message above, you say: "My T cells are over 1,200 , BUT my CD-4 is now up to 399!" Are you saying that your "CD3 absolute" (the total number of T lymphocytes) is 1,200 and that your "CD3+/CD4+ Absolute" is 399? If you have a printout of your most recent lab report, we can get to the bottom of this.
I've gone through your posting history in order to better understand things. You're saying that your first CD4 count was 101 and your first viral load was 140,000. This is clearly indicative of HIV infection. But did you also initially have reactive (positive) EIA and Western blot testing? Second, did you have a second round of CD4s and VL tests before starting treatment? If so, what were the results (in other words, did you have a second test that showed a high viral load)?
Have your doctors ordered another Western blot to determine if your most recent "nonreactive" results were a mistake?
Fact of the matter is, your doctors work for you. They should be responding to your anxiety and fears with follow-up testing to make sure that there has been no mistake, to give you -- and them -- peace of mind. Have you asked them to conduct another Western blot?
Tim Horn
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Karl:
Fact of the matter is, your doctors work for you. They should be responding to your anxiety and fears with followup testing to make sure that there has been no mistake, to give you -- and them -- peace of mind. Have you asked them to conduct another Western blot?
Tim Horn
Karl, this is very true, especially with the VA. I have been very fortunate with the Tucson VA, but not the Albuquerque VA in New Mexico. I want you to know that what Tim said above is especially true with you now, and you must demand a new lab screening, including the vl test. Furthermore, if you do have one done, please don't go into the lab on Friday, because the VA doesn't do vl testing on Friday.
Please do yourself a favor and remember YOU are your own boss at the VA and they work for you! I don't care what anyone else says, this is truly important in this system of care. If you do not get resolution of this problem, and you cannot reschedule all this work, along with a CLEAR explanation of all the labs; then go to the patient advocate, and make sure someone informs the HIV doctors that you have not been taken care of. Don't be patient here, just push on until you get some solution going. I have pushed the VA even as high as Washington DC, because Dr. Bopper is one of the most caring and responsive people in the whole of the VA system. He is the head of the VA HIV services department and will not stand for sloppy work.
In the end, it is you my dear friend that will make the difference between poor care and good care.
Let me know if the above things help.
Remember, DEMAND another lab screening and an explanation!!!
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Karl's situation does not appear to be unheard of, at least according to information posted on the UCSF HIVInsite pages. A May 2006 article states:
"Also, it is known that some individuals with AIDS may lose reactivity to p24, and perhaps other antibodies, later in disease, so that even AIDS patients may have indeterminate Western blot results by some criteria. "
http://hivinsite.ucsf.edu/InSite?page=kb-02-02-01
Also the idea that a WB would always be determinative seems rather unscientific. Tests do have false positive rates and false negative rates even when carefully controlled (i.e. under conditions where lab error is more likely to be controlled than in the field) and as Peter points out lab error introduces even more chances for things to go wrong in odd cases.
One estimate of the ELISA false negative rate is .003%, which means that for every 100,000 tests 3 people might be missed. To answer Grasshopper's concern, if we extrapolate that to the world today, we think about one-quarter to one-third of people with HIV don't know it which is 25 to 33 thousand people out of every hundred thousand for a worldwide total in the millions of people. If everyone were tested, we'd be down to 3 out of every hundred thousand not knowing for a worldwide total of about 1,000 people.
Edited to add (the conclusion): So the problem about HIV spreading unknown is almost all in the fact that people aren't tested, rather than in the accuracy of the tests that we have.
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Wait till october 2009 ? :o
If lack off financial resources is an issue, why not get re-tested at a "free clinic" , if such a facility exicist in your area ?
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Assurbanipal, a P24 test is an antigen test not an antibody test.
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Karl's situation does not appear to be unheard of, at least according to information posted on the UCSF HIVInsite pages. A May 2006 article states:
"Also, it is known that some individuals with AIDS may lose reactivity to p24, and perhaps other antibodies, later in disease, so that even AIDS patients may have indeterminate Western blot results by some criteria. "
http://hivinsite.ucsf.edu/InSite?page=kb-02-02-01
Also the idea that a WB would always be determinative seems rather unscientific. Tests do have false positive rates and false negative rates even when carefully controlled (i.e. under conditions where lab error is more likely to be controlled than in the field) and as Peter points out lab error introduces even more chances for things to go wrong in odd cases.
One estimate of the ELISA false negative rate is .003%, which means that for every 100,000 tests 3 people might be missed. To answer Grasshopper's concern, if we extrapolate that to the world today, we think about one-quarter to one-third of people with HIV don't know it which is 25 to 33 thousand people out of every hundred thousand for a worldwide total in the millions of people. If everyone were tested, we'd be down to 3 out of every hundred thousand not knowing for a worldwide total of about 1,000 people.
Edited to add (the conclusion): So the problem about HIV spreading unknown is almost all in the fact that people aren't tested, rather than in the accuracy of the tests that we have.
Or this sub-article in the link you provided ?
http://hivinsite.ucsf.edu/InSite-KB-ref.jsp?page=kb-02-02-01&rf=46
"Abstract:
Infections by highly divergent strains of HIV-1, first detected in central Africa and grouped provisionally as group O, have not been reliably detected by certain European HIV screening tests. Serum specimens from eight probable group O infections from Cameroon were tested by ten HIV assays licensed by the US Food and Drug Administration. All assays based on synthetic peptides or recombinant antigens failed to detect at least one of the infections; assays based on whole-virus lysates performed better. Divergent HIV strains may be undetected by current HIV tests. Thus active surveillance for and characterisation of HIV variants to evaluate and, when necessary, modify current tests is urgently needed. "
&
"False-Negative Results for HIV Group O
False-negative results by HIV serologic assays have been verified when testing some individuals infected by HIV Group O viruses.(41) This group of viruses, found primarily in Cameroon and Gabon, also has been reported in Europe and the United States.(42) Several "acceptable" routine HIV screening assays have been documented to produce false-negative results in up to 20% of sera from individuals infected with Group O viruses.(43) Although it is difficult to recommend measures to prevent this misdiagnosis, manufacturers of test kits are addressing this problem by incorporating antigens from Group O viruses.(44) Health care providers can be vigilant by inquiring as to the geographic origin of persons tested, or their contact with persons from these areas of Africa. The same is true for HIV-2 infections, when HIV-1-only assays are used (see above)."
=> Were the necessary measures taken into account to prevent a misdiagnosis ?
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Grasshopper, did you happen to take a look at the references? Sensitivity of United States HIV antibody tests for detection of HIV-1 group O infections. Lancet. 1994 Nov. I would say that is a little outdated.
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I was and am under the impression that, until the end stages of the AIDS process, at which point ALL antibody production ceases, an individual diagnosed with HIV infection will produce antibodies.
It is also my understanding that a Western Blot is more sensitive, as it tests for antigens rather than strict antibodies. And barring lab error, is far less prone to false negatives.
I strongly recommend the original poster get confirmation on this recent development, and further recommend that the OP refrain from making claims in Recently Infected forums that people can be HIV positive without, well, being HIV positive.
Unless there has been a breakthrough of the calibre that would necessitate the complete rewriting of the Transmission and AM I sections, and perhaps this entire website.
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All this speculation is not doing anyone any good. I suggest this thread is left alone until such time as Weasel either has independent antibody re-tests or provides us with a lab print-out as requested by Tim Horn. I think there's more to this than meets the eye and as I said, there's no point in all the speculation. What we need here are hard facts and the ONLY people who can provide those facts are Weasel and his doctor.
Thank you for your cooperation everyone!
Ann
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It is also my understanding that a Western Blot is more sensitive, as it tests for antigens rather than strict antibodies. And barring lab error, is far less prone to false negatives.
Actually, Western blot is more SPECIFIC than it is sensitive, hence it is used to weed out false-positive EIA results. EIA, which is highly sensitive, is siginficantly less likely to produce false-negative results, hence it tends to be the final world if someone hasn't been infected with the virus.
But as Ann says, we're really not at the point where scientific debate is helpful to anyone -- what we need is more information (and likely additional testing) from Weasel.
Tim Horn
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Actually, Western blot is more SPECIFIC than it is sensitive
Thanks, Tim, thats what I meant to state. I misspoke in my earlier statement, and stand corrected. I shall refrain from further posting in this thread until the matter is cleared up.