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Anonymous
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Now the experts aren't sure??
      #197486 - 06/24/06 08:33 PM

I saw this on a post from earlier today so I thought that I'd look it up myself and now I want to cry.
If the window period was really 3 months... and if doctors believed that everyone/ all strains would be pickedup, then why wouldn;'t the doctor say this... instead he praises testing repeatedly. This is quite possibly the least reassuring thing that Ive ever read!
Mutations...
Mar 30, 2006

I am a 51 year old female that was diagnosed 3 years ago...HIV positive. And apparently have had this for 13 years before diagnosis because of the type of strain of the virus. At the time of discovery I was so ill that I thought I was dying. I was seeing a group of Docters at least 3 times a week. I had at least 3 HIV tests that came back negative. And I so don't understand how that was.They kept telling me it was just "flu"...for about 4 months. Low grade fevers constantly, forgetfullness, anxiety attacks, even thought I was hearing voices. I lost weight,( not always a bad sign;) and a reoccurring sore on face running from corner of mouth down, almost appeared as if it was eating into skin. Not a pretty sight. They diagnosed this as clemidia,(sorry for spelling?) of the mouth...I knew it was not. I was crying all the time,was in trouble at work...and thought I was just crazy.So when leaving the Doctors office that day,(for the last time) I had my husband take me to the Mental health wing of the local hospital and I admitted myself. Thinking...if not physically sick then I must be crazy.. Even then no one listened to me...all acted as if I was just in search of drugs. Treated horridly there... even refused a glass of water after bed hours.I was so,so thirsty. After complaining about the treatment to the head of the dept. he just told me to let it go, get past it and wanted to talk of "spending sprees" he thought I had been on. Anyway.. a few days later, after not eating, and being so cold, and sleeping all day...I finally just passed out on the way to the bathroom. Best thing that could have happend! Then the experts arrived... I was removed from the mental unit and after two weeks of testing was diagnosed correctly and released. He is still my Docter of course:). Sustiva and combivir are the only two I have ever taken. I am now undetectable from the hundreds of thousand viral load that I had then. I am healthy in all respects. I take the meds and don't even think about HIV most days.

What I would like to know is how hiv mutates to another strain...and is this a common or absolute thing that will happen?




Response from Dr. Sherer

Your case underscores the importance of repeated HIV testing in a clinical setting that suggests HIV disease, but the initial HIV tests are negative.

You ask a simple question, but the answer is not so simple. You are taking a highly effective regimen: in one clinical trial, two thirds of people taking this regimen were still well controlled after three years. So one answer to your question is, if you are successful at taking your medications with excellent adherence, you have a good chance of continuing these good outcomes, i.e. high CD4 cells and a viral load below detection, for many more years.

On the other hand, there is evidence that there is ongoing viral evolution and new mutations, even in people like you with good long term control. It occurs in sequestered sites, such as the central nervous system and the gonads, and these viral strains can also re-infect CD4 cells in the blood.

This may not be inevitable or 'absolute'. It appears that effective antiretroviral therapy (with excellent adherence) neutralizes the effect that such evolution can have on your health, i.e. three drug HAART stops such mutated viruses from causing virologic failure, further resistance, and finally treatment failure.

So...mutations are common, but we have good evidence that effective ART, and even a single regimen, can have excellent outcomes for 7 years or more.

Your job is easy to say, and not at all easy to do: Keep up your excellent record of adherence. I urge you to talk to your doctor about your question and this response.



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Anonymous
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Re: Now the experts aren't sure?? new
      #197489 - 06/24/06 09:06 PM

sounds like you want HIV,

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Survivor
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Re: Now the experts aren't sure?? new
      #197502 - 06/25/06 12:02 AM

Sounds like she had a shitty doctor and shitty diagnostics. thats just my shitty opinion....

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Anonymous
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Re: Now the experts aren't sure?? new
      #197509 - 06/25/06 01:37 AM

Could you tell us what kinds of tests that came with false negative results and when and where, as you mentioned at least three time that were before your diagnosis. Very curious and I would like to test done again trying to avoid those test that might cause false negative.

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Anonymous
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Re: Now the experts aren't sure?? new
      #197568 - 06/25/06 07:01 PM

From the offical CDC training guide.

http://www.cdc.gov/nchstp/od/gap/pmtct/Trainer%20Manual/Adobe/Module_6TM.pdf

Page 11, point #4, sub-bullet

"A negative result usually means that the person is not infected with HIV. In rare instance, a person with a negative or inconclusive result may be in the 'window period". This is the period of time between the onset of infection with HIV and the appearance of detectable antibodies to the virus. THE WINDOW PERIOD LASTS FOR 4 TO 6 WEEKS but OCCASIONALLY up to 3 months after HIV exposure. Persons at HIGH RISK who initally test negative should be RETESTED at 3 months after expsoure to confirm results."

Now the CDC says the window period is 4 to 6 weeks with people having a HIGH RISK (sex with a known postive person type thing) retesting at 3 months after the exposure to confirm a negative from the end of the STATED window period of 4 to 6 weeks.


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SteveR
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Re: Now the experts aren't sure?? new
      #197599 - 06/25/06 09:40 PM

I think there are a couple of possibilities here.

She says she believes she had HIV for 13 years, based on the virus. I'm unaware of any test that will tell a person how long they've been infected (beyond very recent infections). It's possible that she'd actually been recently infected and hadn't yet made antibodies. However, she also says her illness went on for four months, which would tend to rule out ARS. Sooo...

The other possibility is that she'd been infected so long her immune system had become depleted of antibodies. This happens sometimes in VERY sick, late-stage HIV-positive people. And then she eventually generated enough once again to come up positive.

Those are my best guesses.

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Anonymous
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Re: Now the experts aren't sure?? new
      #197612 - 06/25/06 10:18 PM

If you don't trust your negative HIV tests, then why don't you simply go to a HIV doctor and have him run a viral load test on you? Would a negative viral load test put your mind at rest?

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Anonymous
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Re: Now the experts aren't sure?? new
      #197861 - 06/27/06 12:11 PM

Wow, this is really scary. =(

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Anonymous
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Re: Now the experts aren't sure?? new
      #197921 - 06/27/06 07:55 PM

Here's a possibility. She is a budding fiction writer.

Has anyone ever thought to ask how she can now state that her medications have brought her viral load down to undetectable, which implies that a viral load is a easy to detect in her as any one else.

Or why she focues on 'flu' symptoms, which is a symtpom of ARS. 13 years after infection her story would have been more believable if she'd picked a really good OI to have.

Or just exactly what tests were used to 'discover' her virus?

She's not the only one. There are plenty of sick people out there that write in with 'their stories'.

You should spend less time thrilling to the cheap thrills these fiction writers give you and more time using your heads.

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