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Author Topic: Positive initial test results, but negative follow up tests- what to do?  (Read 5986 times)

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Offline ConfusedAboutStatus

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  • Posts: 9
Hi everyone,

I've been through a few months that has well and truly prepared me for a journey into hell. I've spoken to 2 doctors who say there's essentially nothing to worry about, as well as my local GUM clinic who say the same thing, but I'm really not so sure, and wanted some advice.

Towards the end of April, I had unprotected vaginal sex with a prostitute, and close to four weeks later started getting pain and irritation in the tip of my penis. I went to the GUM clinic to get checked out, they did all the STD tests (which all came back negative, much to my confusion- the pain in my penis was 100% real and not imagined, I assure you, so I'm still confused to this day about what caused that), and also said I should have a HIV test, which I did.

Now the nightmare starts. The initial HIV test, which was a antibody/antigen test made by abbott, came back positive. I don't know whether it came back positive for antigens or antibodies, or both, just that it was 'positive'. However, the follow up testing (which was another antibody/antigen test, but made by a different manufacturer) was negative, and a PCR viral load test also came back negative/undetectable. I was told to come back at 6 weeks post exposure for retesting.

So I went back at 6 weeks, got a rapid test done, which came back negative, and the clinic also sent a blood sample off to the lab. The initial antibody/antigen test again came back positive, but the follow up test, and a second viral load PCR test returned negative. The clinic remained non-commital on whether I had HIV or not, and said to come back after 3 months for a final test.

14 weeks post-exposure, I went back to the clinic. I got another rapid test, which was negative, but the test they sent off to the lab AGAIN came back positive, but with, yet again, a negative confirmatory antigen/antibody test (though no viral load test was performed this time). The GUM clinic's conclusion was 'HIV negative', though I decided at this point to go to a private clinic (I was, at this point, under the mistaken belief that it must be human error causing some of these tests to have discordant results, and so decided to test elsewhere).

So I go to the private clinic, 15 weeks post-exposure, and get a DUO test (antigens/antibodies). Yet again, there were more discordant results- I have printed them below:

---------------

ENDOCRINOLOGY
HIV 1 & 2 / P24 Ag screen: 23.09
DETECTED
This result is preliminary and incomplete,
and should not be considered as diagnostic.

IMMUNOLOGY
CONFIRMATORY HIV
VIDAS HIV1/HIV2 DUO Quick: Negative
BISPOT IMMUNOCOMB HIV1/HIV2: Negative
Determine HIV1&2: Negative

COMMENT: HIV 1&2 antibodies NOT DETECTED

---------------

So, an initial test returns positive (with a very high value of 23.09- considering this number would have to be less than 1 for a 'negative' result, it seems like a very high value), but additional tests again came back negative.

The private clinic also gave the conclusion of 'HIV negative', but that 23.09 number is, as I understand it, a huge number for a false positive result- most false positives are in the range of 1-2, and that a value of 23.09 would be more indicative of a true positive result. But on the other hand, at nearly 4 months post-exposure, you'd really expect every test to be positive if HIV were truly present, no?

The GUM clinic, the private clinic, and a doctor I've spoken to online have all essentially said 'forget about this, consider yourself negative, and move on with your life'. This provided some reassurance, but that high number really has got me spooked.

Do the experts here agree with the clinic's viewpoint? I'm not sure what to do at this point. I've been told I 'could' get another PCR test for extra reassurance, but then I've read on the internet that PCR has a huge false positive rate, and the last thing I need is another one of those if I'm truly negative.

Offline RapidRod

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Re: Positive initial test results, but negative follow up tests- what to do?
« Reply #1 on: September 18, 2011, 10:09:19 PM »
You don't have HIV.

Offline Ann

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Re: Positive initial test results, but negative follow up tests- what to do?
« Reply #2 on: September 18, 2011, 11:13:06 PM »
Confused,

You do not have hiv.

If I were you, I'd talk to my GP about screening for autoimmune diseases, as they can cause the false positive results you've been getting.

And please, knock it off with the "journey into hell" and "nightmare" crap. Hiv is not a death sentence and you really piss people living with hiv off when you use such dramatics. I can say this because I am hiv positive myself. It's not a walk in the park by any means, but it's not a
"journey into hell" unless you and your own prejudices make it that way.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline ConfusedAboutStatus

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Re: Positive initial test results, but negative follow up tests- what to do?
« Reply #3 on: September 22, 2011, 01:58:08 PM »
Confused,

You do not have hiv.

If I were you, I'd talk to my GP about screening for autoimmune diseases, as they can cause the false positive results you've been getting.

And please, knock it off with the "journey into hell" and "nightmare" crap. Hiv is not a death sentence and you really piss people living with hiv off when you use such dramatics. I can say this because I am hiv positive myself. It's not a walk in the park by any means, but it's not a
"journey into hell" unless you and your own prejudices make it that way.

Ann


I'm sorry for any offence caused, it wasn't intended as such. It's just discordant results do cause a lot of anxiety and stress, and I certainly wouldn't be able to count on family or friends for support if I did have HIV- my family is very conservative and my friends just wouldn't understand, I'm sure.

I've had a look on the internet for autoimmune diseases- seems like there's a lot of them- 80 or so, and they can be difficult to diagnose. Do you know which autoimmune diseases cause 'false positive' results? The internet says if you have an autoimmune disease you'll probably have symptoms like fatigue and a feeling of being unwell, though I don't have any of that (I didn't even have any ARS symptoms). If I get a 6 month HIV test done and it's negative, I'll talk to my Doctor about the false positives (as before 6 months you can't be 100% sure it's not a true positive and just delayed seronconversion) and the possibility of autoimmune diseases, but which autoimmune diseases should I mention in particular?

Offline Ann

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Re: Positive initial test results, but negative follow up tests- what to do?
« Reply #4 on: September 22, 2011, 02:41:47 PM »
Confused,

The autoimmune diseases I have most frequently seen mentioned in connection with false positive hiv antibody results are systemic lupus erythematosus and rheumatoid arthritis. Ask your doctor about it.

A three month test is conclusive. The only people who might take a little longer than three months to seroconvert and test positive are those who are on chemotherapy for cancer, on anti-rejection drugs following organ transplant, or have been injecting street drugs every day for YEARS.

The vast majority of people who have actually been infected will seroconvert and test positive by SIX WEEKS, with the average time to seroconversion being only 22 days.

 You do not have hiv. If you did have hiv, that negative viral load result you had at four weeks would not have been negative.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline ConfusedAboutStatus

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Re: Positive initial test results, but negative follow up tests- what to do?
« Reply #5 on: September 27, 2011, 05:25:04 PM »
I got back another PCR test today, which was negative/undetectable, which provides some good measure of reassurance. I'm still going to do the antibody testing at 6 months however (my doctor advised me to do this just to be sure, but said he was very optimistic they would be negative).

I asked my doctor about autoimmune conditions, and he told me to forget about those. I'm not all that happy with that explanation and will certainly be seeking a second opinion on the matter. I've looked at the symptoms for autoimmune conditions and I don't have any (with Lupus the internet said most people develop a rash across their face, but I don't have that, and don't have any fatigue, nausea etc either). Well, I have felt a lot of stomach pains and felt isolated from society a bit, but I'd say that's almost certainly to do with the stress of 'false positive' (I hope!) tests, since they always went away when I got negative results, and then resurfaced again after I got another 'false positive'.

I'm going to do antibody testing at the end of October which will be 6 months after exposure, since I'm aware 'elite controllers' can maintain an undetectable viral load while still being infected. If that's negative I'll have to find another doctor to talk to about the autoimmune conditions I might have, since the current one seemed to think I was being a nutter.


Offline RapidRod

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Re: Positive initial test results, but negative follow up tests- what to do?
« Reply #6 on: September 27, 2011, 06:24:25 PM »
■Anyone who continues to post excessively, questioning a conclusive negative result or no-risk situation, will be subject to a four week Time Out (a temporary ban from the Forums). If you continue to post excessively after one Time Out, you may be given a second Time Out which will last eight weeks. There is no third Time Out - it is a permanent ban. The purpose of a Time Out is to encourage you to seek the face-to-face help we cannot provide on this forum.

Offline ConfusedAboutStatus

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Re: Positive initial test results, but negative follow up tests- what to do?
« Reply #7 on: October 04, 2011, 02:53:03 PM »
I've just had another thought. I'm sorry if this seems to be a bit paranoid, but I'm honestly not trying to piss people off here. Please don't give me a time out, this is a geniune query based on what I've read about HIV testing.

I understand the correct testing method is: ELISA test first, then if that is positive, run a western blot test. If that is positive as well, the patient has HIV.

But in none of my tests, even after positive initial results, was a western blot test ever performed. What happened in all cases was the initial (antigen/antibody) test was run (which returned positive), and then a different antigen/antibody test was run (which was negative). No western blot test was ever run to confirm or deny the initial positive results. That was the case at both the GUM clinic and the private clinic.

Should I go back and ask for a western blot, as it seems correct testing procedure was not followed here? I would be able to do that when I go back to the clinic at the end of this month for my 6-month test (my doctor advised me to do this- the 6 month test that is).

Does anyone know why both the clinics wouldn't perform a western blot, and would instead use different antigen/antibody tests for 'confirmation'?

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Positive initial test results, but negative follow up tests- what to do?
« Reply #8 on: October 05, 2011, 09:39:56 AM »
Confused,

The method you describe is not uncommon, particularly if a rapid test is used the first time. The second antibody test will usually be one that is a non-rapid blood draw. This is because the rapid tests are more prone to false positives. It saves time and money to double-check with another antibody test before moving on to the WB.

You can ask for a WB if you want to, but going by your other results, it's going to be negative.

You do not have hiv.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline ConfusedAboutStatus

  • Member
  • Posts: 9
Re: Positive initial test results, but negative follow up tests- what to do?
« Reply #9 on: October 21, 2011, 02:27:00 PM »
I went to a different clinic today, to get tested for the other non-HIV STI's, as I only got tested for those once post-exposure, and that was only at the 3.5 week mark and I've read on the internet some STI's take a bit longer to show up, expecially Hepititus B (though I think if I had Hep B I would know about it! I understand most people get very ill if they have it). That pain in my penis was never given an adequate explanation, though I have been on a course of antibiotics for something unrelated since then so that may have killed it if it was a bacterial infection. Anyway, can't do any harm to get tested just to be sure.

They wanted to do a HIV test, as I had just basically asked for a full screening, and didn't seem all that happy when I told them not to test for HIV- and even less happy when I told them about the (hopefully) false-positive results. The nurse said she 'couldn't believe 3 tests all came back reactive'- was a bit alarmed by this- I was under the impression that in a low-risk setting like the UK, most 'positive' results actually turn out to be 'negative' in the end? Another doctor started talking about criminal transmission of HIV and about how it would be written in my records if someone got HIV off me in the future that I had declined HIV testing and it would look bad, expecially with other reactive results. I stuck to my guns though as the 6 month window hasn't yet passed (I'm still 11 days away from the 6 month mark).

This clinic didn't seem to share the other 2 clinic's optimistic outlook though. I told them confirmatory and viral load testing had always come back negative and only the DUO tests were ever positive, and that I'd had negative rapid tests out to 3 months, but they said the rapid tests weren't reliable in comparison to the laboratory tests (though the confirmatory tests used are laboratory tests, right?), and seemed to think there was still a huge danger. Then again they'd not been working with me for the past few months, I'd only seen them today, so maybe they were erring on the side of caution having not seen the paper results, because I've got to admit, declining HIV testing on the basis of 4 previously positive results looks a bit dodgy from a health standpoint.

I've got a question about those rapid tests though. If by the grace of God I do come out of this negative, I was planning to use rapid tests in the future for when I needed to know my HIV-status (as they yielded negative results all the times I used them, in comparison to the screening laboratory tests). I can't handle a 'false-positive' result every time I ever get tested, the stress is too much. But is it true the rapid tests aren't as accurate as laboratory tests? The clinic I visited today didn't seem to place much value on them.

If the rapid tests aren't accurate enough, and I am actually negative, I don't really know what to do about further testing. I've just started to date this girl and while we haven't had sex yet, if things progress that way I'll probably want to go and get us tested together at some point in the future, but I can't do that if the only good option is one of those laboratory screening tests that will return a false-positive result- imagine the reaction of the girl, she'd be freaked out completely because I know it freaked me out when I got the initial result. To avoid any unneccesary alarm I was going to just get a rapid test if and when that time came.

The other option of course is to just trust that she's not got HIV, since statistically speaking it's quite unlikely. But I don't really want to go down that route as I'm a bit paranoid now, before this testing all started I wouldn't have given it a second thought. So are the rapid tests good and accurate?

Offline ConfusedAboutStatus

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  • Posts: 9
Re: Positive initial test results, but negative follow up tests- what to do?
« Reply #10 on: October 21, 2011, 03:01:20 PM »
Just something I forgot to add in the last post- I've been reading this forum lots, and have come across something called 'pre-exposure proxlaxis'. The idea as I understand it is that if a person takes HIV medication before exposure, it will prevent the majority of new HIV infections.

I do of course plan to use condoms in future, but I was thinking this could add an extra layer of protection incase a condom breaks/I have another crazy moment and forget to use one, or incase I step on a needle or some such other risk.

Does anyone know whether you can get HIV medication in the UK if you're not HIV-positive? I'm not convinced I'm actually negative yet, expecially not after todays clinic visit where they were concerned, but if I am I think the pre-exposure proxlaxis idea might be a good one. I've heard some people on this forum can order medication in from India (Viraday meds?). And most people say the side effects after the first month are low to non-existant.

Just might be a good idea for times when I'm not in a relationship, but to be honest even then you can never be 100% sure your partner is faithful, let's be honest (and NO ONE can be totally, completely sure, no matter how much you trust them). Would perhaps help to protect me against any new infections.

I think I'd have to pay for it myself since I doubt it's avaliable for HIV-negative people on the NHS, but it's worth the cost for peace of mind IMO.

Offline ConfusedAboutStatus

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Re: Positive initial test results, but negative follow up tests- what to do?
« Reply #11 on: November 18, 2011, 04:01:42 PM »
I went for my 6 month post-exposure test a few days ago. These were the results:

ENDOCRINOLOGY
HIV 1 & 2 / P24 Ag screen: 16.93
DETECTED
This result is preliminary and incomplete,
and should not be considered as diagnostic.

IMMUNOLOGY
CONFIRMATORY HIV
VIDAS HIV1/HIV2 DUO Quick: Negative
BISPOT IMMUNOCOMB HIV1/HIV2: Negative
Determine HIV1&2: Negative

COMMENT: HIV 1&2 antibodies NOT DETECTED

The number has fallen from 23.09 to 16.93, which I'm not sure is a good sign or a bad sign. You'd expect antibodies to increase the longer the infection lasts, right? But on the other hand I've heard the p24 antigen isn't detectable a few months after infection due to antibodies, which would explain the drop from 23.09 to 16.93- and so be a greater indication of a real infection.

The clinic didn't seem worried though, and said I was definitely negative. What I'm wondering about though is- there are different strains of HIV, right? What if the first test (the positive one) is picking up a strain that the other 3 tests for some reason are not able to? That would explain the repeated positive results but the negative confirmatory tests. I know I've read on some forums by medical experts that the PCR tests do not test for all known subtypes- is it possible these three confirmatory tests don't either? As the girl I slept with was a foreign prostitute, it's likely she has had sex with lots of men from different parts of the world and so may be infected with a rare strain that some of the tests in the UK don't detect (such as some of the strains found in East Africa).

Does anyone think this is a possibility? I'm going to have my CD4 levels measured when I get the money together anyway, as if it is a rare strain it would still do the same immune system damage that you get in relatively early infection. The number should be from 600-1200 if I'm not actually infected.

Offline RapidRod

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Re: Positive initial test results, but negative follow up tests- what to do?
« Reply #12 on: November 18, 2011, 04:06:20 PM »
Move along, you don't have HIV.

Offline jkinatl2

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Re: Positive initial test results, but negative follow up tests- what to do?
« Reply #13 on: November 18, 2011, 05:14:51 PM »
Rare Strain? Try UNHEARD OF strain.

If after all this mes you end up HIV positive, you will be lucky. You'll be the subject of scientific scrutiny and will likely never have to pay for treatment and services.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Ann

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Re: Positive initial test results, but negative follow up tests- what to do?
« Reply #14 on: November 19, 2011, 09:04:48 AM »
Confused,

You were tested for hiv 1&2. Type two is the one found in East Africa.

All these other things you're speculating about have no basis in hiv testing technology. The correct procedures were used and your ultimate diagnosis is hiv negative.

Don't waste your time on checking your CD4 levels. You do not need those tests.

You do not have hiv. You do NOT have hiv!!!

If you cannot accept the fact that you do not have hiv, you need to seek mental health counselling. We cannot help you with that here.

It's time for you to get on with your life, always remembering to use condoms for anal or vaginal intercourse, correctly and consistently. Do this and you will continue to avoid hiv infection. It really is that simple!!!

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline ConfusedAboutStatus

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Re: Positive initial test results, but negative follow up tests- what to do?
« Reply #15 on: November 26, 2011, 05:29:32 PM »
OK, since the 6 month test, which I have now accepted is a true result (i.e. I'm HIV negative), I've had sex twice, with two different girls. Both these girls were escorts.

We used a condom for both oral and vaginal sex. The condoms didn't break. However with one girl, after I came and withdrew my penis from her vagina, as I was removing the condom I got some vaginal fluids on my hands. Now I'm not saying I did, but I MIGHT have then touched the head of my penis with those fingers.

Is it possible that transmission could occur this way? I know the virus dies within a few minutes of exposure to the air, but this would only have been a few seconds.


Offline Andy Velez

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Re: Positive initial test results, but negative follow up tests- what to do?
« Reply #16 on: November 26, 2011, 05:33:04 PM »
HIV is not transmitted in the latest way that you are needlessly bothering yourself about.

You are HIV negative. And as far a sexually is concerned, as long as you consistently use condoms for intercourse you won't have a problem. Just keep it simple and stop trying to make it more complicated than it actually is. Really. 
Andy Velez

Offline ConfusedAboutStatus

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I've slipped up again.

I'm in Thailand, and was seeing this bar girl (she's a prostitute who works at one of the bars). We stayed together for a few days, she was really pretty and looked healthy so I thought no way does she have anything. Anyway during the 8 days we were together, we had vaginal sex quite a lot...I don't know the exact number, and anal sex twice (all sex was protected).

Anyway she suggests on the 8th day that we stop using condoms. I say OK, but only if she goes to get tested for HIV first. She said fine. So we went down to the clinic...and the test came back positive!

The fact she agreed in the first place makes me think she couldn't possibly have known about this beforehand, and so it must be a relatively new infection where viral loads are at their highest. HIV subtype E is prelevant over here which is considered much easier to transmit hetrosexually than other subtypes. So high viral loads+easy to transmit strain means I'm very very worried now. We had lots of unprotected oral sex both ways, and in some of those cases either I or her had only recently cleaned our teeth so it's possible there were some bleeding gums. We also engaged in deep kissing every day often for prolonged periods so that might potentially be a problem too.

I'm going to get an PCR RNA test 5 days from now which is the earliest the test has any relevance, the doctor said.

I know the board say oral sex and kissing is low risk but what about with potentially high viral loads and with subtype E? If by the grace of God I am still negative I swear I'm never going near anymore prostitutes again.

Offline Ann

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Con,

We NEVER said that kissing or oral were LOW risks.

Kissing is NO RISK.

Getting a blowjob is NO RISK.

Giving a woman oral is NO RISK.

Not low, NO risk.

It doesn't matter what subtype or viral load is involved either. The activities you're worried about are not a risk regardless.

You did the right thing and wore a condom for anal or vaginal intercourse. That's all you need to do and it really is that simple.

You have NOT had a risk for hiv infection and you do NOT need RNA testing. RNA testing would be a waste of time, money and resources.

Don't think you will be permitted to use this forum to go on and on about this NO RISK situation. You won't.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

 


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