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Author Topic: Still Detectable..... Aaarrgghhh  (Read 2228 times)

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Offline bocker3

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  • Posts: 3,359
  • You gotta enjoy life......
Still Detectable..... Aaarrgghhh
« on: August 09, 2006, 10:39:09 PM »
I’m a bit frustrated that I can’t seem to get my VL down to undetectable and am at a loss at how best to proceed.  A quick review:
Tested positive 8/24/05
Sept 2005 – CD4=350 (25%), VL=98,559
Nov 2005 – CD4=288 (18%), VL=43,299
Dec 2005 -- Started on Sustiva/Truvada (first HIV meds ever)
Feb 2006 – CD4=521 (27.4%), VL=539
Apr 2006 – CD4=499 (31.2%), VL=643
June 2006 – Added boosted Reyataz to intensify my regimen
Aug 2006 – CD4=576 (30.3%), VL=111

I had resistance testing done in Nov 2005 and repeated in May 2006.  Both results were the same: 
NRTI mutations- 41L, 208Y, 211K, 215S   
NNRIT mutations – NONE 
PI mutations – 36I, 63P, 93L

So, it seems to me that with a PI, NNRTI and 2 NRTIs that I should be undetectable – of course I am happy that I did have what seems to be a significant drop in this last set of labs AND, I’m down about 99% from my highest VL.  Although, it isn’t as big a concern to me – I’m disappointed that my cd4 seems, basically, unchanged since February (but double my pre-medication level).  My adherence has been 100%.  I currently take all my meds at the same time (before bed), with a snack (usually a granola bar and 4 crackers with peanut butter or cheese).  No real side effects to speak of – although my latest Total Bili was 2.0 – but I expected that with the Reyataz.

My ID doc and I decided that we would repeat the labs in Sept -- to give the Reyataz a full 3 months.  I have no idea what I should do if I remain detectable.

Everyone keeps on telling me not to worry about the numbers, to focus on how I feel (I feel great) and my increased tcells (intererstingly, it is people who are negative or positives with undetectable VLs saying this).  I know what they say is true, but it's hard to move that down from my head to the rest of me.

At any rate -- thanks for letting me vent.  The good news is, while I may be disappointed by today's results, I'm not despondent.  I plan to be around for, at least, another 42 yrs..........

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Eldon

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Re: Still Detectable..... Aaarrgghhh
« Reply #1 on: August 09, 2006, 10:48:46 PM »
Hello Mike, it is Eldon. First of all, welcome to the forums where you will find love, encouragement, support, and many questions answered about HIV/AIDS.

You will find that you labs will fluctuate a bit. You have come a long way with your VL and it is now down to 111. It would be advised to continue to take your meds as prescribed by your doctor, change your eating habits, drink plenty of fluids, and get plenty of rest.

Wait until your next set of Labs and sit down and discuss them with your doctor. Again, it is stressed that you take your meds as prescribed on schedule and do not skip any doses.

Keep us posted, and again, welcome!

Offline jkinatl2

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Re: Still Detectable..... Aaarrgghhh
« Reply #2 on: August 09, 2006, 10:57:09 PM »
Quote
Everyone keeps on telling me not to worry about the numbers, to focus on how I feel (I feel great) and my increased tcells (intererstingly, it is people who are negative or positives with undetectable VLs saying this).  I know what they say is true, but it's hard to move that down from my head to the rest of me.

I am def. one of the people who endorses that.. and trust me, you can smell my viral load down the street :)


"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Joe K

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Re: Still Detectable..... Aaarrgghhh
« Reply #3 on: August 09, 2006, 10:58:31 PM »
Hey Mike,

You might try to just be a little more patient, because you have boosted your CD4s and decreased your VL, both by significant percentages and you have done this in less than a year.  It took me 7 years to increase my CD4s and to get to undetectable.  Forget the numbers for now and just enjoy life.

My belief is that a good VL is one you can live with and that does not require you to surrender your life to the numbers.  You are heading that way my friend.  It seems hard and I understand the fear, but the stress is just not worth it.  Give it some more time and relax.  All your numbers are moving in the right direction, so what's not to like?

Offline HIVworker

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  • HIV researcher
Re: Still Detectable..... Aaarrgghhh
« Reply #4 on: August 10, 2006, 01:08:38 AM »
Just FYI there are three new NRTI and NNRTI mutations that have been found outside of the polymerase region of reverse transcriptase. They are thought not to cause much resistance but can augment existing common mutations such as Y181C etc. Currently this area of RT is not screened routinely in genotype assays.

Both NNRTI and NRTIs work well and are unlikely to be the cause of the low viral load you have, I just wanted you to be aware of these mutations as you appear very well versed in genotype studies.

R
« Last Edit: August 10, 2006, 01:14:56 AM by HIVworker »
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline blondbeauty

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Re: Still Detectable..... Aaarrgghhh
« Reply #5 on: August 10, 2006, 07:16:29 AM »
You are still detectable but your immune system is very healthy!
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 bocker3

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  • You gotta enjoy life......
Re: Still Detectable..... Aaarrgghhh
« Reply #6 on: August 10, 2006, 07:20:15 AM »
Thanks to everyone who has chimed in with advice and encouragment.  I REALLY don't spend too much time focusing on the numbers -- except for the day (or 2) after I receive my results.  According to a "resistance tool" that is available on the John Hopkins Site (it's actually a Stanford based tool), my NRTI mutations are quite problematic -- 41L confers some resistance to a few and 215S, while not a problem in itself, is a transitional mutation and hints at some archived mutations that are trouble (215F or Y).  So, according to the tool (and Dr. Gallant at the Hopkins site), NRTI's are pretty suspect for me -- but I still need to use them.  IN fact, it is his feeling that only when I added the boosted Reyataz in June did I finally get on a "complete" regimen.  At any rate, by the time today ends, I'm sure that I'll be off my numbers obsession until I get my next results on 10/5.

I will say that as my first anniversay of living with this virus approached (Aug24), I have been reflecting on the last year.  It has held challenges that I never thought about, but has NOT been as bad as I expected in the gloom of the diagnosis.  I'm healthy, still working, still playing tennis (and enjoying it more -- winning more too!).  I celebrated 16 yrs with my partner -- who remains negative and has been amazing throughout the whole ordeal -- he really has made this easier on me.  My plan is to live a long time and watch my grandkids grow up.

Thanks again -- so happy to have a place to go where I can vent, read about others feeling the same things as me and receive sage advice from those who have carved the paths for me.

Thanks again!
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline newt

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Re: Still Detectable..... Aaarrgghhh
« Reply #7 on: August 10, 2006, 07:39:27 AM »
The difference between a viral load of 650 and 110 is a log drop of about 0.75, the same as a drop from 43,000 to 7,500. 

Given you only added Reyataz etc in June, I would expect you have a very high chance of being undetectable at the next test, or the one thereafter, but give it some time eh? took me 6-8 months to go from a viral load of 600 to undetectable, but I got there and I am still there.

- matt
"The object is to be a well patient, not a good patient"

Offline frenchpat

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Re: Still Detectable..... Aaarrgghhh
« Reply #8 on: August 10, 2006, 07:42:05 AM »
Everyone keeps on telling me not to worry about the numbers, to focus on how I feel (I feel great) and my increased tcells (intererstingly, it is people who are negative or positives with undetectable VLs saying this).  I know what they say is true, but it's hard to move that down from my head to the rest of me.


Mike,

I would say the same and my VL hovers at around 5000 copies. Would I like it to go down? Yes!  But I suppose this is  mostly because I have yet to be on tritherapy.  Having said that my VL went from over a million to 5000 rapidly and has staid there, whilst my cd4 have slowly regained strength in numbers and percentage.

Without highjacking this thread I would like to ask the enlighted ones:

why is undetectability so important?

The reason I am asking is this: HIV does not hide only in the blood and no one ever measures my hiv levels in my lymph, a volume of liquid three times larger than my blood (about 15 l vs 5-6 l). Same goes for hiv in my cerebrospinal fluid.

I realize that it is a good thing to have low levels of virus anywhere, but does undetectability in the blood reflect the situation elsewhere?

Also, save for the reassurance of having undetectable levels, is there proof that in the long term someone with <50 consistently has better chances of survival than someone with low but measurable levels?

In honesty, I am about to change my meds, but it is primarily because of the lipo that started a while ago; I do hope that in the process the VL will get lowered as the CD4 improve - all that with no worse side effects than now... am I asking too much ::) ?

Pat
People have the power - Patti Smith

Offline jack

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  • fomerly the loser known as Jake
Re: Still Detectable..... Aaarrgghhh
« Reply #9 on: August 10, 2006, 07:46:21 AM »
I have been on meds since 1989. I have only been undetectable twice,each time for a month. I have never been sick from HIV. Don't waste time worrying about it.

Offline HIVworker

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  • HIV researcher
Re: Still Detectable..... Aaarrgghhh
« Reply #10 on: August 10, 2006, 07:49:53 AM »
I am surprised you didn't take a PI until later. It was my understanding that you should be on a nuke, a NNRTI and a protease. Given your NRTI resistance (which is a little problematic) I don't understand why you weren't on a protease sooner - particularly as you have only mild protease inhibitor resistance...

R
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline Matty the Damned

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Re: Still Detectable..... Aaarrgghhh
« Reply #11 on: August 10, 2006, 08:14:43 AM »
why is undetectability so important?

Pat,

I suspect it's a headspace thing more than anything else. It's something to aim for and, given the brutality of the disease all of us are living with, that ain't always a bad thing.

Unless of course we see a VL of say 200 or whatever as a failure. All that effort, taking pills on time, managing side effects and whatnot can seem to some as such a waste. This is why I rarely look at my absolute VL as meaningful. My VL counts have varied by up to 50,000 between tests but I've been told that such a change is not significant.

As with CD4 counts it's all about trends over time.

MIke,

Your VL is heading in the right direction. You're so close to undectable, that to my mind it doesn't really matter. The trend is the right one. Don't be frustrated, be happy!

Fondly,

MtD

Offline Christine

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Re: Still Detectable..... Aaarrgghhh
« Reply #12 on: August 10, 2006, 09:27:52 AM »
Hi Mike,
I have been + since '93, and have never been undetectable. I am very compliant, eat well, rest...all that stuff. Close a few times, but never reached it. I think your numbers are very good. Your trend is one of improvement, no side effects and no oi's.

Your health is more than numbers. It is how you feel mentally, physically, spiritually, how you feel each day.

When I was first diagnosed, and ASO social worker told me not to focus on the numbers, but to live life. I did not believe her at that time, but she was absolutely right. Keep an eye on your counts, but don't worry on them.

Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline bocker3

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  • You gotta enjoy life......
Re: Still Detectable..... Aaarrgghhh
« Reply #13 on: August 10, 2006, 01:23:50 PM »
I am surprised you didn't take a PI until later. It was my understanding that you should be on a nuke, a NNRTI and a protease. Given your NRTI resistance (which is a little problematic) I don't understand why you weren't on a protease sooner - particularly as you have only mild protease inhibitor resistance...

R

Well, the problem here stems from the fact that the lab reports (both in Nov 2005 and May 2006) said that I was susceptible to all Nukes.  It was only when I did some research and found the Mutation/Resistance tool on the Hopkins site and followed up with Dr. Gallant about my concerns with what I found that the true picture came to be.  I then brought that info to my ID doc, who was a bit surprised (and wrote down the link to the Tool for future reference) and we decided to add the PI.
If nothing else, this has absolutely reinforced my desire to be "in charge" of my own care.  The fact that I have a Medical Technology degree (worked in clinical labs for over a dozen years, but not any more) and a Masters in Public Health (yes, I see the irony) makes it a bit easier for me.

Again -- thanks all for your invaluable input and support.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

 


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