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Author Topic: Tested Poz by Antibody tests and Negative by Oral HIV Testing????  (Read 6510 times)

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Offline likearock03

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Hello.

I have recently tested positive to HIV antibodies through a blood test at my local clinic. The next day, I took an oral fluid test and it came back negative. The following day I did a western blot test and it came back positive.

The full set of blood work tests at the HIV clinic came back positive again; however, the labs could not find my viral load, but they have confirmed the HIV1, but not the strain of the virus. I was asked to come back for more tests to do a more 'sensitive' test to find the virus in my blood.....which still came back as undetectable! My CD4 is around 650.

Finally, the doc asked me to give more blood to send to research labs in UK, which will also be sent to the states to do a cellular sequencing of the virus. Does this mean I might have a different strain through mixing of the virus? I then did another Oral HIV test, that came back negative again as the doctor wanted to be sure in case these sort of tests are accurate as they use them in the clinic in which I was tested.

I am so confused and may elect to go on a trial that will be offered next month in the UK, which tests effectiveness of taking medications at different CD4 levels. The pro is that I will likely never have any immune system damage as my CD4 will remain and viral load always remain undetectable, but have to start taking medications many years before the viral load increases/cd4 drops significantly or down to 350, which is when the uk currently starts people on meds. The downside is that I will be taking meds for the rest of my life...

Any ideas on all of this...the doc said this is peculiar...

Offline Ann

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Re: Tested Poz by Antibody tests and Negative by Oral HIV Testing????
« Reply #1 on: July 17, 2011, 10:15:55 AM »
Likearock, welcome to the forums.

I agree with your doctor. It is peculiar. It sounds as though you may be what's called a "elite controller" and elite controllers never have the need to take hiv meds. So slow down on that trial stuff, ok?

I don't know how the doctor decided that you have hiv1, as you need to have virus to look at in order to determine this and you do not have a viral load. That means you do not have detectable virus in your blood.

It is odd that your oral rapid tests keep returning negative results, but maybe (and please note, this is pure speculation on my part, an educated guess, so to speak), maybe you just aren't producing enough antibodies in the oral cavity to trigger a positive result.

I would suggest you read through some information of "Long Term Non-Progressors" (aka LTNPs) and Elite Controllers before you start taking meds you may either not need for years to come, or may never need. One place to start is at the Zephyr Foundation. There are a few other sites as well, but I'll have to go dig them up.

Ann
Condoms are a girl's best friend

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"...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 Ann

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    • Num is sum qui mentiar tibi?
Re: Tested Poz by Antibody tests and Negative by Oral HIV Testing????
« Reply #2 on: July 17, 2011, 10:29:47 AM »
A WARNING FOR PEOPLE FROM THE "AM I INFECTED?" FORUM:

Before this thread goes any further, I want to caution our posters from the "Am I Infected?" forum to not use this man's unusual experience to freak out about your negative results.

If you find you cannot trust your oral rapid results after reading this thread (in a forum where you should not be in the first place) then the answer is simple. Go get a blood test done like this man did.

I do not want to see this thread continually dragged into question in the "Am I Infected?" forum. Do so at your peril.

I'm serious.



Likearock, if you find you start getting PMs (Private Messages) from people who normally post in Am I Infected, please report them. There is a "report to admin" button in the bottom right-hand corner of any PM you receive.

They are not permitted to use the PM privilege (and it IS considered a privilege on this site) to question positive members privately. You can find out where a person normally posts by clicking on their username to get to their profile, where you can then hit the "show posts" link. 

I'll tell you right now, if you start answering them instead of reporting them, they won't leave you alone. I don't want you to be pestered by these people when you are confused and worried yourself. That's the last thing you need.

BTW, you will not be able to send or receive PMs until you have posted in the public forums at least three times.

I'm sorry I've had to post this in your thread, but I know all too well how the freaked-out people in the Am I forum tend to think and what they'll do to continue obsessing about a virus they do not have. I have your best interests at heart.

Likearock, I think you need a hug after all this! ((((((Likarock))))))

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 Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Tested Poz by Antibody tests and Negative by Oral HIV Testing????
« Reply #3 on: July 17, 2011, 10:55:38 AM »
Here's another link for you Likearock: hivcontrollers.org.

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 le_liseur

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Re: Tested Poz by Antibody tests and Negative by Oral HIV Testing????
« Reply #4 on: July 17, 2011, 06:23:57 PM »
You had a blood test result confirmed by a WB positive result, so at least, now you are fixed as to know if you are HIV+ or not. Like Ann said, maybe you're a lucky elite controller, but only time will tell, and as she also suggested, it would be best to wait and see before entering this trial. Maybe you simply won't need to start treatment if your body is able to control the virus by itself. Odd, peculiar, but still good news, in my opinion! And your CD4 count is good! :)

Still, welcome to this forum, I hope you will find it as valuable, informative and comforting than it is for a lot of us!

Is it too indiscreet to know when was your last negative bloodtest? A time frame could give you an idea of how long you might (or might not) have been controlling your viral load to an undetectable level, or maybe I'm wrong/speculating... ?
 

Offline likearock03

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  • Posts: 3
Re: Tested Poz by Antibody tests and Negative by Oral HIV Testing????
« Reply #5 on: July 19, 2011, 03:56:50 AM »
Thank you very much Ann and le_liseur!

Ann, my fingers are certainly crossed to hope that I am the elite carrier! I would be happy to participate in research efforts if that is the case.

My last negative blood test was in March of last year; however, I did another test in May, but they were only giving the Oral test in May, meaning if this test wasn't picking up anything, it could have very well meant that I could have picked it up anytime from three months prior to my March test.

I will hold off on thinking about participating in any trials at the moment. I am hoping to get a result back where they have done a pallet of blood tests last week. I will continue to this topic as soon as I find out in the next week or so. I think it will take a little while as it goes to some high up lab in the UK, and then to the states for further investigation.

Offline Ann

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Re: Tested Poz by Antibody tests and Negative by Oral HIV Testing????
« Reply #6 on: July 20, 2011, 07:53:05 AM »
Good luck with the additional testing. I'm looking forward to hearing more from you.
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 likearock03

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  • Posts: 3
Re: Tested Poz by Antibody tests and Negative by Oral HIV Testing????
« Reply #7 on: July 26, 2011, 11:59:42 AM »
Hi there! I have called today and found out they can find HIV 1 in my DNA. They said my level of HIV is less than 40 copies. So I think finding out if I am a non-progressor, means I have to wait over a period of time and regular tests to find out if and when it will be at a level above 50 copies, where the tests can actually measure. Am I right when I say this?


Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Tested Poz by Antibody tests and Negative by Oral HIV Testing????
« Reply #8 on: July 27, 2011, 09:56:03 AM »
Yes, you will need to be monitored over time. You do not need meds at this point, so that's good news. You will probably want to have blood tests done at least every three months to begin with and if your numbers remain stable at the level they are now, you should be able to drop to being monitored every six months. At that point, you could look into joining one of the LTNP studies. Good luck! Keep us posted. :)
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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