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Author Topic: Another newly diagnosed story/question  (Read 5288 times)

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Offline Betelgeuse

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  • Posts: 163
Another newly diagnosed story/question
« on: May 29, 2011, 02:51:48 AM »
I recently tested positive for HIV.  On 4/19 to be exact.

My subsequent lab tests revealed my CD4 counts at 188 and my viral load at 18,230 copies.

As I struggle to make sense of all this, I am desperate to know a few things.

Is there any indication or clue I can gather from the above numbers as to how long I've been carrying the virus?  

I tested negative for HIV, but positive for syphilis back in 2007 after engaging in risky behavior (received unprotected anal sex).  I received treatment for the syphilis, but the doctor made me promise to come back in a couple months to get retested for HIV, since the window of time in which a seroconversion could take place was too short.  Needless to say, I moved out of the state and never went back to get retested.

I remained celibate for 3 years from being turned off by dating and men.  Last year my hormones started flowing again and got back into the dating scene.  Although I have not engaged in any anal sex, I have given oral to quite a few - some of them were dates, and others were a one-time thing.  As I am very hygiene-conscious, I always make sure I vigorously brush and floss my teeth before making out and beyond.  

It is probably moot for me to spent even an ounce of adrenaline worrying about this, but there's a part of me that is desperate to know whether the same circumstance that allowed for my positive syphilis result back in 2007 is how I contracted the virus - OR the more recent unprotected receptive oral sex was it.

As an aside, the counselor at the clinic that tested me told me in a rather curt manner that it makes no sense for anyone to be carrying the virus for 4 years without any symptoms or some kind of event that requires a hospital visit.  I was at a loss to how to respond to that.  On the other hand, I have had two HIV specialist doctors chuckle a little bit as if to say "yeah right" when I told them that I may have contracted the virus giving oral.  I was told by one of them that it is possible, but very very unlikely - even with my obsessive hygiene practices.

I've felt normal the last 4 years.  And although disputable by my friends ;-) I feel like I look fine.  

Has anyone else struggled with something similar to this?
« Last Edit: May 29, 2011, 02:59:23 AM by Betelgeuse »
04/19/11 - Diagnosed positive
04/29/11 - CD4 188 @ 12.5% / VL 18k
05/03/11 - CD4 171 @ unk% / VL 7k
06/04/11 - Start Truvada/Isentress
07/11/11 - CD4 not tested / VL UD
09/07/11 - CD4 252 @ unk% / VL UD

Offline spacebarsux

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  • Posts: 1,350
  • Survival of the Fittest
Re: Another newly diagnosed story/question
« Reply #1 on: May 29, 2011, 04:51:50 AM »
Hi,

Sorry to hear about your diagnosis but welcome to the forums.

You will find a wealth of information and support here.

To me, your numbers seem consistent with an old infection (possibly since the 2007 exposure you mention), but that's just my guess. I know how hard it is to shake the feeling of trying to ascertain your point of infection (I've been through the same) but I urge you not to dwell too much on it cos it won't change your status. It would be best to look to the future and make the most of it.
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline Hellraiser

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  • Posts: 4,136
  • Semi-misanthropic
Re: Another newly diagnosed story/question
« Reply #2 on: May 29, 2011, 05:16:15 AM »
I recently tested positive for HIV.  On 4/19 to be exact.

My subsequent lab tests revealed my CD4 counts at 188 and my viral load at 18,230 copies.

As I struggle to make sense of all this, I am desperate to know a few things.

Is there any indication or clue I can gather from the above numbers as to how long I've been carrying the virus?  

Nope, none whatsoever.  Anyone who attempts to give you hard numbers is really just guessing.  Some people progress quickly, some people progress slowly.  To add to the confusion your Viral Load for someone who's untreated is actually very low, but your CD4 is similarly low, those two numbers in conjunction are odd.  The only way to know how long you've been infected within certain bounds is to look to your last definitively negative test and your definitively positive test.  It was either within that window or shortly before.

Offline Assurbanipal

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  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Another newly diagnosed story/question
« Reply #3 on: May 29, 2011, 07:19:04 AM »
HIV is insidious -- most people go for years with no symptoms requiring hospitalization. 


So you could have been infected back in 2007.  And your numbers, in fact, look fairly typical for someone who has been infected for a while.  And actually your viral load is quite consistent with having been infected for a while -- viral load typically soars after infection (to around the 1 million range) and then drops within a year into the high 1,000's or low 10,000's and then rises again as you approach AIDS. And tcell counts typically drop 50-100 per year.

Not everyone is typical, some people progress to AIDS much faster, some much slower.  But most people are typical.  So you won't be able to be certain, but given your history and your numbers it is more likely than not that you've been infected for over a year. 
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline mikeyb39

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  • Posts: 930
Re: Another newly diagnosed story/question
« Reply #4 on: May 29, 2011, 09:43:22 AM »
honestly, I wen thru a seroconversion in October/November of last year, I previously tested negative with my doctor on a sensitive test 6 months previous.  I've always been a constant tester at least twice a year.  When I got my diagnosis my viral level was off the charts and cd4 was 240 or so, so it didn't take long for me to get low numbers.  The thing is noone knows what their numbers were previous infection.  This is just not a test that is done, my doc said my numbers may have always been on the lower side. 

mike
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline spacebarsux

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  • Posts: 1,350
  • Survival of the Fittest
Re: Another newly diagnosed story/question
« Reply #5 on: May 31, 2011, 12:01:37 AM »
I'd also like to add one thing. You said you haven't had unprotected anal sex since the 2007 high risk enounter you mentioned. Based on what you say, that by far, is the highest risk you have taken and since your numbers indicate an old infection, it can be assumed that you were infected in 2007.

This is just a guess of course, but seems likely given what you say.
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline Betelgeuse

  • Member
  • Posts: 163
Re: Another newly diagnosed story/question
« Reply #6 on: June 02, 2011, 12:30:44 AM »
I can't tell you how much I appreciate all of your responses.  I have contacted everyone with whom I had been intimate, and received a response from everyone EXCEPT from the 2007 guy.  

I asked my doctor if, with proper treatment and diet, whether I can expect my 188 CD4  number to return to >500 numbers.  I never got a clear response from him which was rather disappointing.  

I am soooooooooooo determined to get my viral load to undetectable numbers and my CD4 numbers close to 600.  Some way, some how it's my mission now.

04/19/11 - Diagnosed positive
04/29/11 - CD4 188 @ 12.5% / VL 18k
05/03/11 - CD4 171 @ unk% / VL 7k
06/04/11 - Start Truvada/Isentress
07/11/11 - CD4 not tested / VL UD
09/07/11 - CD4 252 @ unk% / VL UD

Offline Hellraiser

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  • Posts: 4,136
  • Semi-misanthropic
Re: Another newly diagnosed story/question
« Reply #7 on: June 02, 2011, 03:16:51 AM »
I can't tell you how much I appreciate all of your responses.  I have contacted everyone with whom I had been intimate, and received a response from everyone EXCEPT from the 2007 guy.  

I asked my doctor if, with proper treatment and diet, whether I can expect my 188 CD4  number to return to >500 numbers.  I never got a clear response from him which was rather disappointing.  

I am soooooooooooo determined to get my viral load to undetectable numbers and my CD4 numbers close to 600.  Some way, some how it's my mission now.



So I don't want to rain on your parade, but I wouldn't get my hopes up.  Your body is going to do what it wants and if 300 or 400 is where it stays then that's where you'll be.  I had sky high hopes of my CD4 climbing but it has done a miserly walk back up to the mid 100's.  However I don't suffer from any OI's so I count my blessings in that regard.

Offline Betelgeuse

  • Member
  • Posts: 163
Re: Another newly diagnosed story/question
« Reply #8 on: June 02, 2011, 03:47:19 PM »
Rain on my parade all you want :)

But seriously I am sorry to hear about your slow progress.

Until I have test results that tell me otherwise, I remain full of hope that my numbers will be where I want it to be.  I don't know yet whether my body wants to stay at 300-400.  

I go to the doctor tomorrow for my big meeting.  I need some kind of good news.  If you guys have any extra good-thoughts-juju, please send some over my way tomorrow.
« Last Edit: June 03, 2011, 02:57:03 AM by Betelgeuse »
04/19/11 - Diagnosed positive
04/29/11 - CD4 188 @ 12.5% / VL 18k
05/03/11 - CD4 171 @ unk% / VL 7k
06/04/11 - Start Truvada/Isentress
07/11/11 - CD4 not tested / VL UD
09/07/11 - CD4 252 @ unk% / VL UD

Offline spacebarsux

  • Member
  • Posts: 1,350
  • Survival of the Fittest
Re: Another newly diagnosed story/question
« Reply #9 on: June 03, 2011, 10:31:14 AM »
Good luck man!
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline cwbyway102

  • Member
  • Posts: 30
Re: Another newly diagnosed story/question
« Reply #10 on: June 03, 2011, 12:19:40 PM »
"As an aside, the counselor at the clinic that tested me told me in a rather curt manner that it makes no sense for anyone to be carrying the virus for 4 years without any symptoms or some kind of event that requires a hospital visit."


The counselor at the clinic should go back and learn some things before he councils people.I figured I was infected around 1998-1999 (I've been faithfully with my wife since 2000) she is negative.I didn't even have so much as a flu til the end of 2009. So i went 10-11 years before I even had a clue I was positive.

Feb 22.2010-hospitalized PCP pneumonia
Feb 24 2010-diagnosed CD4 <20 3%    VL 1450000  started Truvada & Reyataz 400mg
April 14  CD4 57  6%  VL 1348
June 24  CD4 97  8%  VL 204
June 25 added Norvir decreased Reyataz to 300mg
August 4 CD4 107 10% VL 107
Nov 3  CD4 144 11%   VL UD
Dec 6  CD4 185  14%  VL UD
Jan 10 CD4 181  12%  VL UD
Mar 29 CD4 294  16%  VL UD
June 29 CD4 211 14%  VL UD
August 21 Switched out Truvada for Epzicom
Sept 29  CD4 220  15%  VL UD

Offline darryaz

  • Member
  • Posts: 450
Re: Another newly diagnosed story/question
« Reply #11 on: June 03, 2011, 12:43:07 PM »
Don't feel hopeless about your CD4 numbers - you never know what they'll do.  Mine was 16 at one point and has consistently been 600+ for a couple of years.

Offline Betelgeuse

  • Member
  • Posts: 163
Re: Another newly diagnosed story/question
« Reply #12 on: June 03, 2011, 03:41:43 PM »
So I'm at the doctors office right now and he made the decision to start me on Truvada and Isentress. I can't be any happier I get to move on and progress to a happier, healthier me.
04/19/11 - Diagnosed positive
04/29/11 - CD4 188 @ 12.5% / VL 18k
05/03/11 - CD4 171 @ unk% / VL 7k
06/04/11 - Start Truvada/Isentress
07/11/11 - CD4 not tested / VL UD
09/07/11 - CD4 252 @ unk% / VL UD

Offline thelovedones

  • Member
  • Posts: 58
Re: Another newly diagnosed story/question
« Reply #13 on: June 05, 2011, 09:37:43 AM »
hi, just chiming in here. I'm sorry about your infection. You're going to get better regardless of your cd4 climbing through the roof or not. It's the combination of getting the VL down and the CD4 up that matters. And give it time. 

I'm guessing your genotype test indicated a mutation. Is there any reason why your doc didn't suggest Atripla instead of the separate pill combo?
2/26/11 Diagnosis at State Dept of Health (anonymous testing center)
2/28/11 Oral Swab Positive diagnosis and confirmatory blood test taken
3/4/11 Confirmed HIV Positive diagnosis; blood drawn for T-cell count, VL, and medical profile
3/11/11 VL: 192765, T-cell: 195
3/16/11 Prescribed Atripla and took Pill 1
4/29/11 - VL: 413, T-cell: 311
6/28/11 - VL: UNDETECTABLE, T-Cell: 437


"I've seen this happen in other people's lives and now it's happening in mine"

Offline leatherman

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  • Posts: 6,200
  • Google and HIV meds are Your Friends
Re: Another newly diagnosed story/question
« Reply #14 on: June 05, 2011, 09:56:13 AM »
I asked my doctor if, with proper treatment and diet, whether I can expect my 188 CD4  number to return to >500 numbers.  I never got a clear response from him which was rather disappointing.
sorta like HR's story, for me it's been 19 yrs and my cd4s have barely bounced above 300 three times. My all time high was 318. But I haven't been back in the hospital for 14 yrs. Our stories just go to show that it is not about how many of cd4s you have (quantity); but how well they do their job (the quality of your immune system).

studies have shown that having a lower cd4 count when beginning treatment often takes longer to recover and recovers less than optimal. for example since in my case my cd4s have been as low as 7 and 12, it's no surprise they have taken so long to recover and have recovered so little. Your numbers (VL and cd4) have never been too terrible, so you may recover quite a bit; but there has been damage done from reaching 188 which could prevent you from ever regaining a high amount of cd4s.

by the way, you say "return to >500". Did you ever have your cd4s tested before you had HIV to have a pre-infection base line number? If not, for all you know your cd4 count may not have ever even been as high as 500, much less greater. ;)

and that's why your doctor hasn't answered you as well as you would have liked. He has no clue as to what a normal (pre-HIV) CD4 count is for you, and no way to judge how much damage has happened to your immune system so there is no way to predict what your recovery might be.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Betelgeuse

  • Member
  • Posts: 163
Re: Another newly diagnosed story/question
« Reply #15 on: June 05, 2011, 12:30:11 PM »
Just goes to show how ignorant I was about the whole thing. I thought non-HIV infected people were in the 900-1,200 range.

And the I see other stories of people getting initially diagnosed with their CD4 numbers in the single digits only to return to >500 numbers.

Thanks for clarifying for me.
04/19/11 - Diagnosed positive
04/29/11 - CD4 188 @ 12.5% / VL 18k
05/03/11 - CD4 171 @ unk% / VL 7k
06/04/11 - Start Truvada/Isentress
07/11/11 - CD4 not tested / VL UD
09/07/11 - CD4 252 @ unk% / VL UD

Offline Betelgeuse

  • Member
  • Posts: 163
Re: Another newly diagnosed story/question
« Reply #16 on: June 06, 2011, 11:51:35 PM »
hi, just chiming in here. I'm sorry about your infection. You're going to get better regardless of your cd4 climbing through the roof or not. It's the combination of getting the VL down and the CD4 up that matters. And give it time. 

I'm guessing your genotype test indicated a mutation. Is there any reason why your doc didn't suggest Atripla instead of the separate pill combo?

My doctor was concerned about my mental acuity during my adjustment period.  I told him I didn't want to take any time off work to test out my side effects.  I've decided, however, once I've depleted my 90-day supply of my current regimen, I'll be asking him to switch me to Atripla.
04/19/11 - Diagnosed positive
04/29/11 - CD4 188 @ 12.5% / VL 18k
05/03/11 - CD4 171 @ unk% / VL 7k
06/04/11 - Start Truvada/Isentress
07/11/11 - CD4 not tested / VL UD
09/07/11 - CD4 252 @ unk% / VL UD

Offline thelovedones

  • Member
  • Posts: 58
Re: Another newly diagnosed story/question
« Reply #17 on: June 07, 2011, 07:41:37 AM »
the sooner the better. good luck to you.
2/26/11 Diagnosis at State Dept of Health (anonymous testing center)
2/28/11 Oral Swab Positive diagnosis and confirmatory blood test taken
3/4/11 Confirmed HIV Positive diagnosis; blood drawn for T-cell count, VL, and medical profile
3/11/11 VL: 192765, T-cell: 195
3/16/11 Prescribed Atripla and took Pill 1
4/29/11 - VL: 413, T-cell: 311
6/28/11 - VL: UNDETECTABLE, T-Cell: 437


"I've seen this happen in other people's lives and now it's happening in mine"

 


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