October 2013 Moms

AIDS/HIV test indeterminate...Long!!

AIDS/HIV test indeterminate...Long!!

Okay! Last week I went to my regular checkup with my Dr. At the end of my apt she said...."I need to talk to you about something. Let me start by saying you are FINE. Okay?" I said okay and she began to tell me how my HIV Western blot test came back indeterminate, at my last apt 4 weeks ago.( the western blot test, tests for antibodies present when you have HIV.) she said she doesn't like telling people over the phone,at that they have to be retested In a month. So she just waited to tell me.

She then showed me my test results and how its rated on a number system 0-2. 0 being negative , 1 being a slight presence, and 2 being positive. I was zero in all but one category, and in the last category I had a 1 rating. She said she doesn't think I have HIV and that a false positive or indeterminate result is very common but that they need to do the western blot test again ( then she told me how to look up my test results online, because she was doing a humanitarian trip this week.)

Come to Tuesday .I look online, and the second test came back indeterminate again. I freaked called the Dr, and the nurse filling in said she didn't really know anything, or what to tell me! I went home crying and had another sleepless night. 

DH called today and demanded someone explain what a second indeterminate result ment. They basically told him, it is good that nothing changed to positve and that a second indeterminate test is good because my body is probably producing this antibody due to my pregnancy. But then they called back and said they need more blood to run a test actually testing for HIV and not just the presence of antibodies.  I went over straight from work and gave more blood.

I have to wait until Saturday to get those results and I am freaking out!I got tested at 4 weeks for HIV  for my life insurance and it came back negative, but this is the worst feeling ever!!! It is consuming me! Has anyone else gone through this?

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Re: AIDS/HIV test indeterminate...Long!!

  • ABrennABrenn
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    No experience, but I hope they get this cleared up for you.... I am sure it's some kind of error. 
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  • Wow, no, I haven't been through that but I will pray for you and LO.  That must be scary, and though I know its not the situation you or anyone wants to happen, it is a very manageable disease these days, and if there is something to it, at least it was discovered before birth so LO will be protected from it. 

    Good luck, and like they said, i'm sure everything is fine and it is just some fluke. 

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  • If they tested you for life insurance proposes and it was negative, I wouldn't worry. It's super stressful and I'm sorry you're dealing with that, but I'm sure your results on Saturday will be negative!
     
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  • I'm sorry that you have to deal with this. It's got to be super stressful. I work for the health dept doing HIV testing so I know a little bit about this. If you got two indeterminate western blot tests a month apart, that is good. There is not much else the doctor can do except to wait and re-run the test. Do you know what test she was running now? Hopefully everything comes back good on Saturday. In the mean time, just try to relax. Pregnancy is one of the reasons known to give an indeterminate western blot in HIV negative women and hopefully that will be the case with you. I'll be thinking of you.
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  • Amjoy25Amjoy25
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    Wow! I hope it turns out ok. 

     
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  • kdjuddkdjudd
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    Oh my gosh that would be so scary. Praying for you, hun. Please keep us updated.
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  • I'm so sorry you have to go through this; how scary! Did they do an antibody test before the Western Blot? The only reason I ask is because in our lab, Western Blot isn't standard. Only done when the ELISA (which tests for HIV antibodies) comes back reactive (positive). If I were you I'd request they draw new labs and send them to a different lab. Or maybe your doctor can do the rapid test done in office and results are available in 20 minutes. This might give you the peace of mind.

    Hopefully it's nothing and the whole thing gets resolved ASAP! 

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  • image Lesley0228:
    I'm sorry that you have to deal with this. It's got to be super stressful. I work for the health dept doing HIV testing so I know a little bit about this. If you got two indeterminate western blot tests a month apart, that is good. There is not much else the doctor can do except to wait and re-run the test. Do you know what test she was running now? Hopefully everything comes back good on Saturday. In the mean time, just try to relax. Pregnancy is one of the reasons known to give an indeterminate western blot in HIV negative women and hopefully that will be the case with you. I'll be thinking of you.

    i asked the blood tech, she said something like a HIV viral load...I don't know! I was trying to not cry! So I think that is what she said.

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  • image 2have2hold:

    I'm so sorry you have to go through this; how scary! Did they do an antibody test before the Western Blot? The only reason I ask is because in our lab, Western Blot isn't standard. Only done when the ELISA (which tests for HIV antibodies) comes back reactive (positive). If I were you I'd request they draw new labs and send them to a different lab. Or maybe your doctor can do the rapid test done in office and results are available in 20 minutes. This might give you the peace of mind.

    Hopefully it's nothing and the whole thing gets resolved ASAP! 

     they might have, but just didn't tell me! I honestly don't know! I did not pay attention to what tests  were taken just because I had no reason to be concerned! Wish I would have! 

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  • Oh honey, what a stressful thing to have to go through. I can sympathize. My first round of blood work came back indicating that I did not have a thyroid. Same kind of thing: 1 test came back normal. 1 "weird" (as so nicely stated by the endocrinologist). Got more blood drawn and alas it was a just a mistake on the lab's part. Hopefully that will be the case for you as well.  
     


  • So sorry you're dealing with this added, scary stress. Please keep us posted. Will be thinking about you.
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  • Thanks girls! I will keep you all updated!
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  • image Brandontricia:

    i asked the blood tech, she said something like a HIV viral load...I don't know! I was trying to not cry! So I think that is what she said.

     

    Hi, I am sorry you are going through this. Like PP mentioned, the antibodies made during pregnancy can cross-react with the Western blot test, making it indeterminate (which is different from a frank positive test). They are probably checking a viral load, which just means a test for the amount of HIV RNA (the building blocks). If your risk factors haven't changed since your last test, which it sounds like they have not, this test should be negative and it would rule out HIV. This can be very stressful and again I'm sorry about this but just know that it is not uncommon for this to happen. Good luck and try not to stress!

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  • I know it is hard but try not to freak out too much. My dh had something similar happen to him. He went to give blood and got denied because some tests said that he had the HIV antibodies. While his Dr ran more tests for HIV/Aids, and everything came back clear.

    I hope everything goes well for you. Hugs. I know how hard this can be.  



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  • Hey, just wanted to let you know you're not alone! 

    I had 3 HIV screenings during my first pregnancy and all came back positive, but a diagnostic Western Blot test always came back negative. 

    The same thing happened with my HIV screen at the beginning of THIS pregnancy (positive screening, negative blot test), they wanted me to come back for a second, but I know I don't have it, so I declined. 

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  • image RedheadBaker:
    Hey, just wanted to let you know you're not alone!nbsp;I had 3 HIV screenings during my first pregnancy and all came back positive, but a diagnostic Western Blot test always came back negative.nbsp;The same thing happened with my HIV screen at the beginning of THIS pregnancy positive screening, negative blot test, they wanted me to come back for a second, but I know I don't have it, so I declined.nbsp;

    Thank you! It is just a relief to know that I am not alone! I feel so freaking overwhelmed, but I know I don't have it. It's just so scary!
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  • Ycu2013Ycu2013
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    image Brandontricia:
    AIDS/HIV test indeterminate...Long!!Okay! Last week I went to my regular checkup with my Dr. At the end of my apt she said...."I need to talk to you about something. Let me start by saying you are FINE. Okay?" I said okay and she began to tell me how my HIV Western blot test came back indeterminate, at my last apt 4 weeks ago. the western blot test, tests for antibodies present when you have HIV. she said she doesn't like telling people over the phone,at that they have to be retested In a month. So she just waited to tell me.She then showed me my test results and how its rated on a number system 02. 0 being negative , 1 being a slight presence, and 2 being positive. I was zero in all but one category, and in the last category I had a 1 rating.nbsp;She said she doesn't think I have HIV and that a false positive or indeterminate result is very common but that they need to do the western blot test again then she told me how to look up my test results online, because she was doing a humanitarian trip this week.Come to Tuesday .I look online, and the second test came back indeterminate again. I freaked called the Dr, and the nurse filling in said she didn't really know anything, or what to tell me! I went home crying and had another sleepless night.nbsp;DH called today and demanded someone explain what a second indeterminate result ment. They basically told him, it is good that nothing changed to positve and that a second indeterminate test is good because my body is probably producing this antibody due to my pregnancy. But then they called back and said they need more blood to run a test actually testing for HIV and not just the presence of antibodies. nbsp;I went over straight from work and gave more blood.I have to wait until Saturday to get those results and I am freaking out!I got tested at 4 weeks for HIV nbsp;for my life insurance and it came back negative, but this is the worst feeling ever!!! It is consuming me! Has anyone else gone through this?


    I have definitely heard of false positive HIV tests during pregnancy. Prayers going your way!
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  • Hoping it was just a false positive!
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    10.27.2010
    10.28.2013


  • Sending thoughts your way!  I'm sure it's stressful but it could easily be a mistake with the tests.
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