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Author Topic: Lots of confusion  (Read 2056 times)

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Offline appleboy

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  • Posts: 344
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Lots of confusion
« on: May 18, 2007, 11:23:16 AM »
So I have been seeing 2 ID doctors.  Both I trust with my life.  My one doctor at the University did a Viral Load and it was undetectable on the super sensitive test.  The other doctor has never had undetectable lab result yet.  So he is wanting me to to add Abacavir because he has not seen an undetectable test.  While I trust them both I am moving my care to the doctor at the University since that is where the VRX496 study I am doing is going to be at.  I am so confused and I waiting for an e-mail or call from the doctor at the University. So granted I am just frustrated.  Below are the lab results I got this morning.
CD4 581
VL 76
My results from the University 3/12/07
CD 517
VL Undtectable

 ???
AppleBoy
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
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Offline milker

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Re: Lots of confusion
« Reply #1 on: May 18, 2007, 12:17:25 PM »
Hi Appleboy,

I can't say about meds, but the results look similar. It is very possible that the labs have different thresholds and one can find 76 where the other cannot find anything less than 100, or at the time of the university test you had < 70 and today you had 76. It's only a 6 point difference, and doesn't count as a significant log increase.

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline appleboy

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Re: Lots of confusion
« Reply #2 on: May 18, 2007, 12:26:10 PM »
That is what I am thinking but all the lab work done for him has never been undetectable.  But I have had one from the other doctor.  Mostly his concern is that I am maybe becoming resistant to Atripla.  So needless to say I have no clue what to do at the moment.  I am almost against adding another medication but again I am still waiting for the other Dr to call and give her thoughts.
Thanks Milker!  ;D
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline thunter34

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  • Posts: 7,324
  • His name is Carl.
Re: Lots of confusion
« Reply #3 on: May 18, 2007, 12:29:34 PM »
I still wouldn't start a whole new additional med with a VL that low.  Nope.  No thanks.  When I have seen a significanct trend upwards....and honey, below 100 is NOT that kind of trend in my book....then I will consider it.  For me, such a trend upwards would have to be going in the thousands.
AIDS isn't for sissies.

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: Lots of confusion
« Reply #4 on: May 18, 2007, 02:31:35 PM »
Got the e-mail from my doctor at the University.

You were undetectable with us on 3/9/07. 

This viral load from this most recent visit (76) is low enough to be within the limits of error for the test.  Our cutoff is 75 - and even though it doesn't say what the cutoff is, it's not going to be outside of the error range, even if the cutoff is 50 or lower.

The viral load that you had with him before that was 152 (1/25/07), and then others have been either "<400" or higher than that, on their way down.  The 152 might have been real, on its way down, but the ones since then (ours and the other Dr) should both be considered undetectable.

There may be some room for debate, but I'd be on the side of saying let's not add abacavir for these numbers. You'll be screened for the study in June, and they will follow you very very closely to make sure you're undetectable for the next 6 months before anything is done there. But that gives us ample opportunity to get more data before we act.

Hope that answers your question - take care!
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline milker

  • Member
  • Posts: 4,034
  • Protected phone sex
Re: Lots of confusion
« Reply #5 on: May 18, 2007, 03:53:52 PM »
 ;D Good news :)
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: Lots of confusion
« Reply #6 on: May 18, 2007, 05:07:50 PM »
Oh Milker you are not kidding!  I so did not want to have to take another medication.  Now thanks to Dr. Hines' e-mail I don't have to worry.  I sometimes wonder about the other doctor.  I think he is great but sometimes I think I know more than him which causes me to really question the need for somethings.  Other things that don't help is doctors don't seem to talk to your other doctors causing you to have to play the traffic cop which just drives me insane.  Now that I finally told the other doctor that today was the last time I was coming I won't have to play middle man to the two doctors.  YAY!
AppleBoy
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 25,363
Re: Lots of confusion
« Reply #7 on: May 18, 2007, 06:47:21 PM »
Apple, that's super excellent news from your university doc. I found it very troubling -- though not nearly as much you must have of course! -- the idea of going on to a new regimen when your numbers wouldn't seem to warrant that.

So happily that problem has been well resolved. Way to go!

Have a great weekend with that load off of your mind.

Cheers,
Andy Velez

Offline appleboy

  • Member
  • Posts: 344
  • Just me!
Re: Lots of confusion
« Reply #8 on: May 18, 2007, 10:37:13 PM »
This is why I always say we as consumers of modern healthcare need to question things that don't seem right.  Study as much as you can about HIV and treatments.  It not only helps you help others but it helps you help yourself and it helps you with your doctors.
« Last Edit: May 19, 2007, 09:20:02 AM by appleboy »
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline BT65

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  • Member
  • Posts: 10,088
Re: Lots of confusion
« Reply #9 on: May 19, 2007, 10:29:48 PM »
Before being started on my current regimen of Sustiva and Trizivir, my doctor prescribed two meds for the HIV; I can't remember what they were not.  Anyway, I looked them up on the internet and found out they weren't supposed to be used together.  I immediately called my doctor and he called me back like two hours later and said "you're right, they aren't supposed to be used together."  Here's to the ones who participate in our own health care!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Life

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  • Posts: 2,388
  • Member 2005
Re: Lots of confusion
« Reply #10 on: May 20, 2007, 03:55:07 PM »
I would be curious to whom your docs use for lab tests? As well, are they running the same test?   Glad to hear the <50... You so deserve that and a bit of a break from all of this..

Hugs,


Eric

Offline AIDS2HIV

  • Member
  • Posts: 96
    • www.aids2hiv.com
Re: Lots of confusion
« Reply #11 on: May 21, 2007, 01:23:50 PM »
theres 2 types of VL tests, yielding two types of levels of "undetectable"....one is under 400 is considered "undetectable"....the other is under 50.

either way, people like me, would give thier nuts to have your numbers, be happy and quit worrying, you are healthier than you think  :)
Its the future of Hiv Education, and Resources www.aids2hiv.com      Got Community?

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: Lots of confusion
« Reply #12 on: May 21, 2007, 01:37:10 PM »
boy,
Sounds like others have hit on the likely source of discord, different limits of detection on tests.  Still, keep in mind a few things:

1.  Don't confuse the care received in a research setting with treatment.  I'm sure that your handlers will repeat that to you over and over, but take it from someone who's been under study--they just want you for your body, and they will take little to no responsibility for your general care.

2.  You need to have trust in your treating doctor, period.  I had been with a longtime friend as my treating physician and primary since pre-Dx in like 1990, until he nearly killed my ex two years ago by missing PCP.  I had accepted that he was overworked and other scatter-brained, but he trusted my judgment about directing my meds and encouraged me to enter a study, and I carefully scrutinized every prescription he wrote.  Causing someone I still care about to wind up in an ER on ventilation at 2 a.m. one morning after weeks of coughing (six months after having unprotect sex with a guy who gave him syphillis and had HIV) was enough to shake my confidence.

Cheers,
David
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

 


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