Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
July 28, 2014, 03:02:38 PM

Login with username, password and session length


Members
  • Total Members: 23059
  • Latest: dum@ss
Stats
  • Total Posts: 632113
  • Total Topics: 47863
  • Online Today: 257
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Terrible numbers, doesn't make sense, not sure what to do  (Read 1897 times)

0 Members and 1 Guest are viewing this topic.

Offline qrky

  • Member
  • Posts: 25
Terrible numbers, doesn't make sense, not sure what to do
« on: February 09, 2007, 12:40:37 PM »
My CD4s aren't "terrible" - 394 and 32.6%...but I just found out my VL is 841000...he wants me on meds soon but none of this makes sense to me, if my VL is that high I should be sick as a dog, shouldn't I?....I have no clue what to do, I'm confused, scared...as much of the meds (he suggests Atripla, I know the side effects are terrible) as the numbers and nothing is making sense to me

-doug

Offline Boo Radley

  • Member
  • Posts: 1,252
  • Not a "real man" and damn proud, mithter... FAB
    • Animal Rescue New Orleans
Re: Terrible numbers, doesn't make sense, not sure what to do
« Reply #1 on: February 09, 2007, 01:05:23 PM »
Doug,

More than your CD4 count your viral load dictates starting treatment ASAP.  A CD4 count of 394 at 32.6% is a "good" number in that you are unlikely to catch any of the opportunistic infections that occur when CD4 counts drop into the 200 and lower range.

You are not getting sick because your immune system is battling the virus and is still intact.  With such a high viral load, however, the likelihood your CD4 count will continue to decline is pretty good. 

I hope that makes sense.  Best of luck -- and if you take Atripla a lot of folks here have said it's been pretty easy, at least I think they have.

Boo

Edited at 12:42 to say LISTEN TO ANN!! (below) She knows what she's saying and I forgot about establishing a pattern before starting meds.  Wait until 1 or 2 more draws at least to see what changes.  Your CD4 is high enough not to have to worry about OIs and it may increase as your body deals initially with the invader.
« Last Edit: February 09, 2007, 01:46:11 PM by Boo Radley »
String up every aristocrat!
Out with the priests and let them live on their fat!





Everything I do, say, think, excrete, secrete, exude, ooze, or write 2007 Sweet Old Boo, Inc.

Offline lucas

  • Member
  • Posts: 20
Re: Terrible numbers, doesn't make sense, not sure what to do
« Reply #2 on: February 09, 2007, 01:19:00 PM »
I am sorry to hear that your vl is so high,  My partner had same scenario you are having now hes vl was 300,000 and his C4 were 420 He started with Atripla back in December and with in 3 weeks it went down to vl 2,000  It has worked really good, just make sure to ask the side effects to your doctor since there are some, like nausea, and feeling drunk an haour after you take it, also have a red spots or rash all over the body on the 7th day but with some benadryl it goes away with in a week.
Please stay strong and try to keep a positive attitude, don't sweat the small stuff it will help you manage VL

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Terrible numbers, doesn't make sense, not sure what to do
« Reply #3 on: February 09, 2007, 01:34:15 PM »
Hi qrky,

Your VL / CD4 combo is totally consistent with primary infection.  Your CD4 and percent are very good and if I were you, I'd wait until I had a few more lab results under my belt before jumping into meds. You do have time. Chances are excellent that you'll see that VL go down on it's own very soon.

How experienced is your doc? I'm kinda surprised the doc suggested drugs after just one set of results. You can't really make decisions with just one set, you need to see a trend - especially with numbers like yours.

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 AustinWesley

  • Member
  • Posts: 815
    • HIV Discussion Group on Myspace!
Re: Terrible numbers, doesn't make sense, not sure what to do
« Reply #4 on: February 09, 2007, 01:36:06 PM »
Hey Doug,

The other guy is right.  These drugs seem to knock the Hell out of the virus.   The whole thing scares me too.  I was really frustrated that in my case the CD4's kept declining no matter what changes I've made.   Like why me, what did I do wrong?  That kind of thinking.   It can drive ya nuts.

Don't get too caught up in the numbers game.  I know some people post what seem like Olympic CD4 counts and what not.  Everyone reacts differently to this damn virus.  

The most important thing is that you aren't sick or having any issues.   That's great news.  

I hate to be repetitive, but I'm gona quote my friend again on what he said to me as I'd been so worried about having to start up meds too.  

Here's what my friend said to me:

"Just keep in mind that the FDA requires that they list every side effect, even if only one in 1, 000 experience it. I've been on meds for over 9 months now & have no side effects what so ever!"

That made me feel better.  I've got my own doc. apt. today to begin discussing meds.  Thinking about it in those terms has helped me not worry so much.   Some people don't get any side effects at all and most of them aren't gona be on here posting.   Generally people don't come on to a forumn to say how great a med is and that they have no issue although there are a few.  Keep in mind it's likely the majority who are doing just fine on meds with little or no effects don't come on here.

Wishing you all the best.  Follow your docs advice and keep healthy.

Wesley

Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline AustinWesley

  • Member
  • Posts: 815
    • HIV Discussion Group on Myspace!
Re: Terrible numbers, doesn't make sense, not sure what to do
« Reply #5 on: February 09, 2007, 01:38:20 PM »
Hi qrky,

Your VL / CD4 combo is totally consistent with primary infection.  Your CD4 and percent are very good and if I were you, I'd wait until I had a few more lab results under my belt before jumping into meds. You do have time. Chances are excellent that you'll see that VL go down on it's own very soon.

How experienced is your doc? I'm kinda surprised the doc suggested drugs after just one set of results. You can't really make decisions with just one set, you need to see a trend - especially with numbers like yours.

Ann

  


And, I overlooked that point.  Ann's correct!   Usually, they won't suggest meds with just one set of labs.   Have you had others? And if you were recently infected it's not uncommon for the VL to be sky high from everything I've read and heard.

Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline qrky

  • Member
  • Posts: 25
Re: Terrible numbers, doesn't make sense, not sure what to do
« Reply #6 on: February 09, 2007, 02:50:19 PM »
The numbers don't make sense...I got a second opinion, UConn is making bad recommendations for who knows what reason...I've got an appointment with a doc from Deaconess Monday afternoon but the shitty part is cause I just got hep vaccine Monday, if they do tests they're gonna be whacked also.  Maybe I'm making a wrong assumption but the only way possible for these numbers to be primary is that I got one version back in the summer and another end of November, cause the November time would've been way too soon to give me the initial pos result first week of December.  Though again that would mean I'm a good ten weeks almost out from a re-infection which I don't know whether it would produce a VL spike or not, and the one person I wasn't safe with tested neg a week before I was with him anyways, so I'm just thoroughly confused.  Add to this I only had sex of any kind with three people that could possibly have gotten me infected since last June (when I was neg, unless that test was wrong).  Add to this my total CD4 + CD8 is 949 which strikes me as very low overall, the percentages are 1/2% under "normal normal" and the actual counts registered "normal normal" on the tests.  Something is waaaay wrong, and this is freaking me out because the people I lean on end up freaking worse than me and I end up supporting them.

-doug

Offline jack

  • Member
  • Posts: 1,578
  • fomerly the loser known as Jake
Re: Terrible numbers, doesn't make sense, not sure what to do
« Reply #7 on: February 09, 2007, 03:08:48 PM »
my vl was over one million for awhile while I was on drug holiday and cd4s were 350. I have never been sick from aids.
today I am undetectable and cds are at 360.
take the drugs. some people have no sides at all. I would rather be sick and alive then dead

Offline ChattyJay1

  • Member
  • Posts: 10
Re: Terrible numbers, doesn't make sense, not sure what to do
« Reply #8 on: February 09, 2007, 03:17:11 PM »
qrky....ann was completely correct!  your numbers may bounce a bit in the beginning.   Like she said, just get at least one more (if not more) 3month lab tests under your belt before you really stress yourself out.  I may be new to the forums, but I've been around HIV for several years and i've been reading these forums for quite some time now.  Ann is right.  My advice is (and it'll sound stupid)....just try to "relax" and push it out of your mind for the time being until you get your next lab results.  Doctors are not always perfect.  My prayers are with you!   :)
We should all be working together to make activism our first tool, and our first line of OFFENSE not Defense!!!  :-)

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Terrible numbers, doesn't make sense, not sure what to do
« Reply #9 on: February 09, 2007, 03:43:22 PM »
Hi Doug,

Quote
the one person I wasn't safe with tested neg a week before I was with him anyways

Did he tell you this, or did you collect the results with him? I don't know how well you know him, but people aren't always completely honest about their testing history. You may also not know if he'd been with anyone else in the three months previous to his test. A negative result only means the person was definitely hiv negative three months before the day of the test and not everyone realises that.

Either way, no matter which time you were infected, you would still be in primary infection as it can last for months.

Have you read through the Blood Test Lesson?

Take a few deep breaths. You're going to be ok, nothing's going to happen to you overnight. Your CD4 and percent are fine and the viral load will start to come down.

I would suggest asking your doctor if you can delay starting the hep B vaccine until your numbers start to stabilise. Have a few more blood draws over the coming weeks and go from there. You don't need to rush headlong into anything just yet.

Take your time, digest some basic information and see what your numbers do in the next few weeks.

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 ChattyJay1

  • Member
  • Posts: 10
Re: Terrible numbers, doesn't make sense, not sure what to do
« Reply #10 on: February 09, 2007, 03:53:55 PM »
side note...as far as Atripla goes....  i'm on truvada, reyataz, and norvir.  truvada is a major component of Atripla (which i couldn't take for various reasons because of Sustiva being in it).  my only suggestion with that drug would be this:  follow the directions, take it 1hour before a meal, or 2hours after a meal...and DON'T make your "meal" a high-fat McDonald's big mac meal LOL.  if that is the drug you and your doctor decide on, the side effects are minimal for most people...and whatever side effects you have, they'll pass and go away after the first few weeks.  Just relax....you are going to be just fine! :)
« Last Edit: February 09, 2007, 03:56:53 PM by ChattyJay1 »
We should all be working together to make activism our first tool, and our first line of OFFENSE not Defense!!!  :-)

Offline Razorbill

  • Member
  • Posts: 622
Re: Terrible numbers, doesn't make sense, not sure what to do
« Reply #11 on: February 09, 2007, 04:08:49 PM »
Chill.  You're second guessing everyone because your freaking out.  If in fact you were recently infected, it may be years before you need the drugs.  Get more draws like Ann said.  Make sure you're doc is an infectious disease specialist.  Your immune system status is, well, let's say busy right now.  Things will probably settle out for the best.

Offline skeebo1969

  • Member
  • Posts: 5,699
Re: Terrible numbers, doesn't make sense, not sure what to do
« Reply #12 on: February 09, 2007, 05:37:16 PM »


  Doug,

   Like the others have said Ann has really given you some good advice.  My viral load went as high as 234,000 and came back down on it's own...this was before I ever started meds.  That first year of infection can be strange....


  Thomas
I despise the song Love is in the Air, you should too.

Offline budndallastx

  • Member
  • Posts: 463
Re: Terrible numbers, doesn't make sense, not sure what to do
« Reply #13 on: February 09, 2007, 06:13:25 PM »
Ann's right .. Get a pattern going before jumping on the meds.

Don't let taking meds scare you though.  The meds are vastly improved and my experience has been positive so far with good results.  Stressing out does not do you any good. 
Meds since: 11/20/2006
Sustiva / Truvada
12/08/2008 VL:<48 CD4 622 (38%)   
9/8/2008 VL:<48 CD4 573 (30%)
5/2008 VL:<48 CD4 464 (30%)
1/2008  VL: <50  CD4 425(28%)
9/2007   VL: <50  CD4 465 (27%)
6/2007   VL: <50   CD4 443 (26%)
3/2007  VL: <50   CD4 385 (25%)
12/2006 - VL: <50   CD4: 384 (25%)
11/2006 - VL:  22K  CD4: 208 (18%)

Offline blondbeauty

  • Member
  • Posts: 1,784
Re: Terrible numbers, doesn't make sense, not sure what to do
« Reply #14 on: February 09, 2007, 07:51:08 PM »
As Ann and other people have told you, that high viral load corresponds to initial infection. With time your body will be able to control the virus. Atripla terrible? It depends on the person but I am taking sustiva+truvada=Atripla and have no side effects.
You may also want to start meds now like "alberche" another member in these forums did 3 months after infection. If your CD4 counts are so good with such a high viral load, that means that your body is resisting the pressure of the virus very well. If you suppres the virus with HIV meds your cd4 count would be able to recover very soon because your immune system cant be damaged so early in the infection.
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline poet

  • Member
  • Posts: 934
  • Poet living and working in Central Maine
Re: Terrible numbers, doesn't make sense, not sure what to do
« Reply #15 on: February 09, 2007, 08:18:24 PM »
My CD4s aren't "terrible" - 394 and 32.6%...but I just found out my VL is 841000...he wants me on meds soon but none of this makes sense to me, if my VL is that high I should be sick as a dog, shouldn't I?....I have no clue what to do, I'm confused, scared...as much of the meds (he suggests Atripla, I know the side effects are terrible) as the numbers and nothing is making sense to me

-doug


I will post, just to concur, Doug, with what the others are telling you.  Your cd4's are 'fine' for the moment.  You wouldn't be sick or sick as a dog.  We have had a few threads about guys who started on Atripla and found it magic, one pill, few or no side effects.  Keep posting away here.  Try to read as much as you can (per Ann).  If this is still driving you nuts, see if there is a support group in your area of CT so that you can find support and not have to reach inside yourself to support others?  Best, Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.