How can you tell how long you have had HIV?

[redbull]

I just got my first set of #'s and still do not know exactly how long I have been poz.  Is there any way to tell about how long you have had it or when you were poz realistically by the #'s or anything?

[redbull]

I forgot to mention I was tested about 7-8 years ago and it came back negative.  I haven't been tested since then until now but am trying to figure out about how long I may have had this.

[decayingsinner]

According to what my doctor said, there really isn't a way to tell when you became infected. My doc told me I could have been infected for a while and my numbers were steadily moving, or I could have recently been fighting off  something I was completely unaware of (not sure if he said those exact words, but I had no prior symptoms, but basically something within the immune system).

[Assurbanipal]

Recently the CDC has been using a test called STARHS to see if someone has been infected for 6 months or less.  But the test works better on groups than for individuals (it makes a lot of mistakes that tend to cancel each other out).

Beyond that there is really no test that can tell you.  Many doctors will try to guess based on your numbers -- the median time from infection to AIDS is 8-10 years, so if you are getting close to AIDS they will guess a longer period.  But some people progress a lot faster so there is no guarantee about matching up the timing to you.  Sometime during the period from 3 months before your last negative test until your diagnosis is the interval.  

Some people can think back and remember being sick with seroconversion illness very specifically.  Do recollect anything like a bad flu in the last 7- 8 years?  That might have been it (but it might just have been the flu too)

[redbull]

No i dont recall ever being that sick so I dont think I ever experience the seroconversion thing I have read about.  I dont see how people pinpoint that anyway considering how people get the the flu and stuff,  how would you know its that or just the flu?  Dont get it. 

[Assurbanipal]

No i dont recall ever being that sick so I dont think I ever experience the seroconversion thing I have read about.  I dont see how people pinpoint that anyway considering how people get the the flu and stuff,  how would you know its that or just the flu?  Dont get it.  

Yeah, I know how you feel -- same thing for me, but some people seem to be very positive they can put their finger on the moment.  . .
 
One of my doctors was sure he was going to pin it down to the minute when he asked me if I ever had night sweats:
Yes.  
When?
I had them for years, couldn't remember quite when they started -- blamed it on too many blankets...
So much for that
  

Many of us don't know and in the end it isn't that important -- its moving ahead that counts.  But it still nags at you...

[mecch]

Everyone has their unique seroconversion experience.  Mine was like a migraine headache I had never experienced with the flu.  Then the rash.  Then the buring esophagus.  It was not like flus I had had in my life.  I didnt have much of a fever.  The clinic told me 3 times, actually, that I had the flu!!!  My family doctor was on holiday. When he came back I asked him to check and voila, HIV.

[elf]

I was feeling very weak and had terrible headache for 2 months.  
I knew/felt something was wrong.

[Oceanbeach]

I can tell because I tested every December (near Christmas) and every July (near Independence Day) for many years.  I can even remember the morning I got my HIV because we started having sex while I was sleeping, we had a relationship and I trusted him.  Boy, was I surprised to find that thing had no latex covering on that thing.  There was a really sick thought, I might have to live the rest of my life with this man as he dropped me off at my house that morning.  I had a negative test on December 1995 and again on July 1996 but, I started sero conversion in August 1996.

My medical dr. thought I was having a nervous breakdown.  The Dermatologist asked if I had HIV and I said there was a negative test last month.  The December 1996 positive test was not a huge surprise.

What do you do when your boyfriend knowingly gives you HIV?  Every once in awhile if I am in Los Angeles, I leave a rose on his grave.    Have the best day
Michael

[Oceanbeach]

Hey Redbull,

Pardon me for not saying welcome to the forums, I usually have better manners.  Welcome to the Forums     Have the best day
Michael

[randym431]

Unless one knows the time/date for sure, we always wonder.
I was neg in 2000, pos in 2005. Started seeing "signs" (weight loss,
energy level issues) in 2004.
When I tested pos in september 2005, my cd4 was 85 and vl 500,000.
Doc said he thought from that, maybe I had been pos for 8 years.

So my question, can hiv total the body immune system in just 2-3 years???
I think it sure can... for some. Depends on ones body and reaction to infection.

Could I have been infected 8 years when tested in 2005? That would mean
infected in 1998.

Could I have been pos during the test in 2000, but still tested neg?
Could I have been re-infected after 2000, and thus sent a low level infection
out of control to ravage my immune system in just 2-3 more years?

The mystery…

[Luke]

The simple fact is that most of us don't even know what the state of our immune system was before we were infected - your pre-infection CD4 count could have been 400, or it could have been 1200 - so trying to use largely irrelevant averages to extrapolate just how long you have been infected, is nothing more than a meaningless guessing game which actually achieves very little.

The simple fact is that it isn't at all implausible that your natural, and perfectly healthy, CD4 count could actually be so low that it is below the level at which current guidelines recommend that you start treatment. That can make it all seem very scary if you are expecting your immune system to hold out for an average 5 years before needing treatment, but it is just one of the vast number of variables and is perfectly normal.

Focus on making the best you can of the future, not what could have been if only ........

[hivsweden]

randym: It sure varies. I know for a fact that I was infected in 1996 (tested negative 1995 and 1996 I had a really bad case of the "flu" with strange rashes a few weeks after coming back from a holiday trip where I had unprotected sex)

In 1997 I had shingles and I felt a lot more tired than normal off and on. And in -99 I caught pneumonia which didn't react to standard antibiotics and finally I got tested for hiv and got an aids diagnosis with a CD4 count of 48. So, in three years from infection I progressed to an aids diagnosis.

[skeebo1969]

   I've had it since April 9 , 2005......   acquired it at exactly 2:45 pm....

[Ann]

   I've had it since April 9 , 2005......   acquired it at exactly 2:45 pm....

Yeah, sure, that's what you  say. It could just as easily been 2:46 pm.

I know when I seroconverted (mid-May 1997) - I've never been so sick in my life and I hope to never be that sick again. It lasted about four or five days and I really should have been hospitalised - I had a temperature of over 104 and was unconscious for much of the time. When I was  conscious, I couldn't walk and was in tremendous pain. As for when I was infected, it could have been anytime in the previous two to four weeks before I was ill.

Ann

[skeebo1969]

Yeah, sure, that's what you  say. It could just as easily been 2:46

  That's because the clock by your bedside was wrong......


(disclaimer no she didn't infect me, I only came to know Ann from my September 14, 2005 experience when she told me I was not going to die anytime soon......  thankfully she was right!)

[randym431]

I've had it since April 9 , 2005......   acquired it at exactly 2:45 pm....

Thank God I have an alibi...     

[BT65]

Tested positive 20 years ago.

[sdguyloveslife]

Not sure there's any way to tell how long if you've been positive - especially if you were infected more than a few months ago.  I happened to test while I was still in the window period - so, I had not "officially" seroconverted yet, but I had a positive result via nucleic acid testing (HIV RNA). 

I tested 02 Feb '09 via ELISA test and it was negative.  I tested again 21 Apr 09 via the oral mouth swab test and it was negative.  That same day, blood was drawn for NAT testing.  It showed up positive.  NAT testing can detect HIV RNA in your blood as quickly as 5-7 days within infection even though antibodies cannot be detected at that time. 

A few days later when the clinic called me back in (ugh! that dreaded phone call!), I had blood drawn again for a confirmatory Western Blot and it showed indeterminate.  Some of the protein bands were evident, others were missing (indicative that full seroconversion had not yet taken place).  Although, by the time those results came back, I already had low T-cells and viral load testing done which confirmed my positive result anyway. 

They also did some tests called Vironostika LS-EIA and Ortho LS-ECI which I believe measure levels of antigen and antibody (?) and those results concluded that I was "recently infected." 

On 01 May 09, I was given my AIDS diagnosis based on cd4% < 14% - my cd4 cells were 243 and at 13%; VL = 3161.  From that point, I had weekly blood draws and counts and by 26 May 09 my doctor called me to come into his office that day and we decided that my best option was to go on medication.  I started meds on 27 May 09. 

[madbrain]

I just got my first set of #'s and still do not know exactly how long I have been poz.  Is there any way to tell about how long you have had it or when you were poz realistically by the #'s or anything?

Other than the date of your last negative test, there is not.
Some people will progress very fast, and other very slowly or not at all.

For example, my bf and I both seroconverted in 2006. We both tested positive about 6 months after our last HIV negative test.

My bf's first labs showed HIV+ and AIDS diagnosis based on CD4%. He had to start HAART medication soon after.

My first labs were very good - normal CD4, very low VL. And 2.5 years later I have a lower viral load than when I first tested positive. My labs are still excellent, and I'm an HIV controller in a study now. I may never get to an AIDS diagnosis, and I may never need to be on HAART medication.

And keep in mind that's for 2 individuals infected with the exact same strain of the virus, with no drug resistance - as shown by genotype test. Our doc compared them. Now imagine if we had a different virus !

There is just so much variation out there between individuals, and different viral that strains, you can't make any guesses about how long you have had it based on tests after you are confirmed positive. You have to look back at the dates of your negative tests from before.

[mpositive]

I went thru the seroconversion really bad.  Hospital kept saying I had Mono and my HIV test came back negative.  Kept ending up in the emergency room dehydrated.  Completely weak to the point where I could not sit up for more than a few minutes.....it was aweful!  They got a pos test and the doctors did not believe it.  I was not in a "high risk" group (stupid terminology as far as I am concerned) and my CD4 count was 1300.  So they tested me a few times while I was bedridden in hospital.  Eventually came back positive.  So, needless to say, I know the time, the place, the woman that gave it to me....ugh.....  She no longer talks to me, she is married too, so I thought g-d was getting back at me.

11/1/2008   Seroconverted - Acute Infection         
1/6/2009   553   22.45%    206,000   
1/29/2009   584   25.21%    333,000   
2/19/2009   502   23.48%    270,000   
3/26/2009   446   21.00%    103,173   
6/11/2009   478   17.00%    130,874 No Meds yet

[missy]

I went though the seroconversion really bad.  Hospital kept saying they didn't know what was wrong with me.  There answer was to give me more antibiotics.  I was so week and sick I thought I was going to die.  I was not in that "high risk " group either they had a ID doc there and he was baffled. My bf and son had me transferred to Johns Hopkins by ambulance and by that evening I was told I was HIV poz. My VL was over 1,000,000. Just two months before that I tested negative.  So I don't buy the time period theory.

For some it can overcome really quick. ~Mary

[Ann]

 My VL was over 1,000,000. Just two months before that I tested negative.  So I don't buy the time period theory.

A VL of over 1,000,000 is totally consistent with acute primary infection - and proves nothing one way or another about the "time period theory".

In the majority of people, the super-high number that accompanies acute primary infection will come down on its own without meds over the course of the next six months to a year, and some people will start to control the virus sooner. A small percentage will not be able to bring this number down on their own. A very small percentage.

Ann

[Inchlingblue]

In the majority of people, the super-high number that accompanies acute primary infection will come down on its own without meds over the course of the next six months to a year, and some people will start to control the virus sooner. A small percentage will not be able to bring this number down on their own. A very small percentage.

All of that is true and accurate but, since the CD4s are also affected, there are probably people who get an AIDS diagnosis during acute infection, such as Madbrain's boyfriend, yet over time those numbers might have stabilized. In other words, the combination of Low CD4s/High VL means two totally different things when it is happening during acute infection v. when it is happening during chronic infection and most doctors who have been treating HIV for a long time know this. Others just look at the numbers and if they meet the guidelines for starting meds they start, without taking into consideration acute v. chronic stages of progression.

There's something to be said for starting meds during acute diagnosis anyway but people should have the option of starting that early or waiting since there are pros and cons to each.

[madbrain]

Hi,

All of that is true and accurate but, since the CD4s are also affected, there are probably people who get an AIDS diagnosis during acute infection, such as Madbrain's boyfriend, yet over time those numbers might have stabilized. In other words, the combination of Low CD4s/High VL means two totally different things when it is happening during acute infection v. when it is happening during chronic infection and most doctors who have been treating HIV for a long time know this. Others just look at the numbers and if they meet the guidelines for starting meds they start, without taking into consideration acute v. chronic stages of progression.

There's something to be said for starting meds during acute diagnosis anyway but people should have the option of starting that early or waiting since there are pros and cons to each.

Actually my bf only had a VL of 4000 when he first tested positive. His AIDS diagnosis was due to CD4 of 13%, and absolute CD4 of 300, at 6 months from his last negative HIV test. He was not sick and would never have suspected he was HIV+, and would not have been retested anytime soon if I hadn't tested positive and told him to retest.

Over the next few months, his CD4  went down to 230, CD4 % down to 9, and VL up to 35,000. His VL never came up very high in any test. But it was going up.

I think for both of us, the acute infection period where we presumably had a high VL must have been fairly short, definitely less than 6 months.

[Inchlingblue]

Madbrain: has he had a good recovery of his CD4s since starting meds?

[madbrain]

Madbrain: has he had a good recovery of his CD4s since starting meds?

His CD4 has got up over time - just not as much as we hoped. I just checked all his labs, his peak is 430 about a year ago. He had his low at 203 once after 6 months of meds. His VL has always been undetectable since about 3 months after starting meds. His CD4% was mostly stuck in high teens. Lately, it is going up. His latest lab was CD4 380 and 26% . This is after 27 months of meds.