POZ Community Forums
HIV Prevention and Testing => Do I Have HIV? => Topic started by: siobhan on September 10, 2006, 09:19:28 am
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Hello everyone, I've been reading the forums here and you guys are so helpful - I thought I'd seek some info/experience from you all as what I'm finding on the net is really complicated and difficult for me to understand.
I tested positive on ELISA and indeterminate about 2 1/2 years ago. My doc didn't even hand me a pamphlet or a phone number or anything, just did a second test which came back almost two months later with the same results. She said I wasn't positive but I was still freaked out.
Of course, the test results drifted around in the back of my head for ages, and totally cramped my lifestyle. I got shingles and strange rashes. I went to an anonymous clinic about 1 1/2 yrs ago, told the staff what would likely happen with my results. They tested me and it came back the same way. Twice.
I went back to my GP and made her test me for Lupus, Celiac, all kinds of autoimmune stuff. Nothing. I let it go to the best of my ability, but the recent AIDS conference in Toronto brought me back to reading about testing etc, so I contacted my local AIDS Service Provider and this brings me to my question. They are referring me to an HIV clinic at the teaching hospital here and the doctors have stated that they want to do a genotype test on me. From everything I've looked at on the net, I can't see how that's going to help ... genotype tests seem to be more geared towards determining how well meds are working, and obviously, I am not on any.
I have a counsellor at the ASO who I will pummel with questions as well, but thought I'd see if any of you guys had experience with this genotype test thing.
Thanks a mil. :)
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I have no idea why they would want you to have genotype testing. You can read more about genotype testing in the lessons.
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Siobhan, I would also want to know what the purpose of the genotype test is and more importantly why you cannot get a definitive up and down clear answer about your HIV status. Since a number of problems have been eliminated as a possibility you should be able to get a definitive HIV test result.
As you probably know neither shingles nor rashes are HIV-specifc occurences although I can see how they would trouble you when you haven't yet gotten a solid answer about HIV. No wonder you're concerned.
By the way, what was the nature of the original exposure which caused you to be tested?
Keep us posted on how this is going.
Cheers,
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Yes, I do know that shingles/rashes aren't specific to HIV, but I think it points to immunologic problems.
My doctor usually put HIV and Hep C on my labs for my physicals because I used to be a heroin addict and a sex trade worker. I tested negative in 1998 on both ELISA and the pcr and Western Blot tests. I really have no way of knowing how I might have been exposed, but I am sure it wasn't via needles because everyone I used with has HEP C and I do not have that.
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Siobahn
I agree with the others. I can't see the purpose of a genotype test at this stage. I'd recommend you have another HIV antibody test (ELISA) and work from there.
Best of luck.
MtD
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I've already had four positive ELISA's in the span of a year and a half. I suppose the odds are not with me in those being false positives....
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I've already had four positive ELISA's in the span of a year and a half. I suppose the odds are not with me in those being false positives....
Siobahn,
That is concerning. I would ask you one other thing:
Have those positive ELISA tests been confirmed by Western Blots? Standard practice is that positive ELISA's are always followed up with a WB test.
Regards,
MtD
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Hi, thanks. I think I am a bit confused...
Are ELISA tests the same as EIA tests? I tested positive four times on EIA's and they did Western Blots each time that were indeterminate. And there was another test that was indeterminate but I can't remember if it was a p24 or a pcr test. I asked for the print out of the results but I can't find it now. ???
The hospital clinic is probably going to do them all over again anyway, before doing the genotype thing. I was reading this other thread in this forum about a delta 32 gene or some such. Would they be looking for that? I really don't know. I find it all so confusing.
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Doll,
I can understand why you're so confuzzled at the moment. Just hold tight and we'll have some information for you babe.
ELISA and EIA are the same thing.
Regards,
MtD
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Thank you. I appreciate it so much. You guys are amazing.
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Siobhan,
There are several things that can cause false positive results. They include, but are not limited to: EBV, HBV, HAV, rheumatoid factor, and being or having been pregnant. We had someone posting here not long ago who had false positive results as a result of a rheumatoid condition.
I really don't think you are hiv positive - you would have had a positive WB by now if you were. Keep working with your doctor and possibly get a second opinion (someone with "fresh eyes" on your case). I suspect an underlying condition is causing you to have false positives.
Good luck getting to the bottom of this and feel free to keep us posted.
Ann
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Just want to add to Ann and Matty's comments that you are entitled to and NEED an explanation of what is going on. This is too important to settle for not getting a solid diagnosis whatever it may turn out to be. You shouldn't have to live with that kind of uncertainty which has to be having heavy wear and tear on you emotionally and physically too for that matter.
Hopefully you will ultimately test negative. But whichever way it goes, you do need to know.
Good luck with getting this dilemma resolved and keep us posted.
Cheers,
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Yes, I feel that my lifestyle has been a bit stunted (to say the least!) since this happened. My contact at the ASO says the same thing, that I should be able to get to the bottom of this, even though my GP dropped the ball on me on this one. Once I go to the HIV specialists and they finish testing me, I'll post the results back here. If it's positive, I'll become a full time member, if neg - then I'll post that for future reference for other people experiencing the same thing.
Thanks again. :)
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Best of luck Siobhan.
For what it's worth, I agree with Ann. Most likely you don't have HIV. If you did one of the WB's would have turned up positive by now. Whatever it is, I hope you identify it and beat it.
Keep us posted, doll.
Fond regards,
MtD