undetectable, what does that mean to you?

[milker]

So I got my VL results, 50  (and CD4 604!!!!!!)

This used to be called "undetectable", but my doctor said that now the tests have a sensitivity of 10!!!!!!!! There is going to be a point where they will be able to detect a single entity of the virus, so the term "undetectable" will probably disappear from our vocabulary.

I'm not sure how I feel about this. I wanted to see "undetectable" in the results, but unless my VL drops to 9, I will never see that word. I'm stoked at the progress but disappointed at the same time. I know it's just a word, but to me it was a milestone that I don't think I'll ever be able to reach.

I'm curious to know how you feel about the disappearance of the "undetectable" milestone?

Milker.

[dixieman]

milker... I had my labs done at UAB just a couple of weeks ago... and I'm still considered undetectable... so I'm sure you will eventually hit the undetectable level soon... but, 50 is awesome... my cd4's were 1542 undect... and 68%... poz 18 years and still here when everyone else I knew who had this virus are long gone ... I just refused to give up... alot of its got to do with the mind... positive thinking... I do not dwell on the negative ... it has not been easy but, I just keep on. So don't read to much in it... your doing great!

[John2038]

In South Africa, the Public Academic Hospitals VL tests have a treshold of 25 cp/ml.
RSA is a developing country, but with the highest HIV infection rate in the World.
This may explain why the rich countries such as USA and EU countries still continue to offer only 40, 48 if not 50 cpm/ml only.

Lowering this treshold is a progress.
Not only it will allows a day as you say to remove from our vocabulary "undetectable" (to be replaced by 0) but it will allows the emergence of new studies which may lead better preventions.

Well just my 1 cent.

[pozniceguy]

I always just regarded that word as a step toward "better health"  no longer as susceptible to most OI's...if we keep lowering the threshold for this maybe we will get to  "normal"  someday...I would prefer not infected  but it is too late for that milestone...

Nick

[Assurbanipal]

The word is less important to me than the association of undetectable with:
 - less infectious (or potentially not infectious -- at least for Alpine sex     )
 - a signal that the virus was stopped from breeding in me and so could not mutate into a resistant strain.

Perhaps, with more sensitive tests, someday we will be able to get those questions answered directly.  I'd take that!

[dtwpuck]

The test with a 10 threshhold has been around for a while; it was just too expensive for most insurance companies.  I was on a study that used it.

I've always felt that the term "undetectable" was misleading personally.  Although, I will admit to feeling anxious when my viral load shot up to whopping 52 once. 

I stopped paying attention quite a while ago anyway.  All I really want to know is "good" or "do something about it".  The details don't make much difference to me when the only thing I can do to change them is to continue taking my meds.  I'm already doing that.

[Oceanbeach]

Hey Milker,

I was thinking of you the other day.  Jan posted the group photo from San Francisco and it made me smile. 

I have been undetectable since 1998, diagnosed in 1996 w vl at 36,000.  Over the past few years here in Sonoma County, I have been able to rethink life as I have also maintained a T-cell count of around 365 since 1998.

Lately, I have been having physical therapy to improve mobility, have been treated for Osteopenia and I am walking well and planning a hike in Yosemite next month.  We are also treating blood pressure, cholesterol and bone density as doctor feels, I have gotten past the part of dying from AIDS and should plan on dying of a heart attack at 85 years of age, in my own bed.  I never thought Naked and Ninety belong in the same sentence so' I settle for 85.

Another thing I think as important in the quality of life argument is... For the 4 years, I have lived in sonoma County, I have been a level 1 client at our ASO.  I do everything myself and get a phone call once each year from a case manager.  Not a problem but in the previous 8 years, I have served as my own case manager and only called one if I needed help.  As of this year, if I need any help, I can call a case manager who will be available if I need one.

What I think, I see for myself is a stable T cell and VL counts and what ever terms are used to describe the needs for services used or needed are not going to affect me individually. 

My true concern is, I have been on SSI since 1996 although I had been trying to become re employed since 1998.  As an individual, I have put out over 450 resumes for jobs in 11 years and had some interviews but was never hired.   I have been unemployable for over a decade, what if Social Security bellies up or what if some future administration should find people like me to be employable, dust off the return to work program and stop benefit payments?  Hugh Jackman can play my role in the movie and Julia Roberts can play yours.    Have the best day
Michael 

[decayingsinner]

Undetectable is a great thing to hear. wonderful. However, the virus is still present and I think about that everyday.  What concerns me is my cd4 count which has been around 326 or so. It has slowly been going up and my doctor said I might have had a naturally low count before HIV. 

[minismom]

When Mim was first tested (at 6wks old with a repeat at 8wks old), her VL was listed as "2 million+".  The first 22 months of her life she was a very sick baby.  She had continued bouts of RSV, pneumonia, gram-negative blood infections (6 of them), ear infections, staph infections, 5 months in the hospital, blood transfusions, and in-home IV therapy.  We almost lost her a couple of times.

When Doc called and told us she was "undetectable", I knew she was going to live. 

Mum

[Ann]

Mum, that post gave me chills up and down my spine. Here's to one heck of a survivor! Long may she reign!

Ann

[veritas]

Clinically, at this time, undetectable is really a misnomer, since the virus can be detected in other areas (ie: seminal fluid,resting cd4s etc where most of the virus in one's body resides.). It seems that eliminating the free-flowing virus in the blood reduces but does not eliminate, viral transfer. However, being undetectable, certainly seems to disrupt viral progression and thats a good thing. Absolute undetectable virus  won't come without eradication. Hopefully we will see progress in that direction in the near future.

See study concerning ud status:

http://www.natap.org/2009/CROI/croi_157.htm

v

[Robert]

I agree.  I like the term "undetectable".  It means progress, pure and simple.

[Miss Philicia]

It took me 13 fucking years of popping pills to get The Holy "Undetectable" -- so when I read about handwringing over one blip I have to roll my eyes a bit on here.

The word represents both frustration and, I guess, satisfaction on my part.  Frustration that for many people, the introduction of HAART wasn't the glamor tea party that it was for 98% of my HIV+ friends.  In fact it screwed me up the ass because scientists fucked up the first formulation of saquinavir.  Thanks Roche (who later redeemed themselves with Fuzeon).

[Inchlingblue]

I think it's worth noting that whatever residual viremia exists in one's body when one is on a successful HAART regimen and considered to be "undetectable" is virus that is being shed from reservoirs, rather than continuous replication of virus that the meds can't get to. This is very good and important news, which was reported at the 2009 CROI. So whether they use the word"undetectable" or they give you a more exact number, be it 50, 40, 20 or whatever, that should not matter.

What's important to know is that this is virus being shed from reservoirs and not continuous replication of new virus (which would be very disturbing and have huge implications regarding resistance). You could argue that the higher the number you are given the better (within reason), because you are killing more of them with HAART as soon as "they come out, come out, wherever you are," (the previous line to be read in the voice of Glenda the good witch). You're depleting your reservoirs even faster@!

LINK:

http://www.thebody.com/content/confs/croi2009/art50467.html


PS: In fact, if they can find a way to get more of this residual virus to come out even faster, it could eventually lead to total eradication, i.e. a cure.

[mjmel]

Lets see...20+years positive and 'undetectable' (according to old criteria) since late 1999.

Consider, I was never undetectable with this new under 10 count.

So what? Doesn't affect me adversely. I don't want to sweat the small stuff.

Bottom Line: I'm surviving long enough and with a quality of life good enough.

Mike

[Tempeboy]

HIV can also be measured in CSF - (Cerebral Spinal Fluid).

This research measured viral load in CSF using a test that was sensitive to 2 copies per ml.

http://www.medscape.com/viewarticle/550267

It seems that viral load in blood does not equal viral load in other reservoirs - and detectable viral load in CSF is an indicator of the level of virus in the brain - and even at low levels this can manifest in a range of neurological and neuropsychological symptoms.

[joemutt]

to me it meant that it was supressed but not gone, like the virus being present but in the shadow and that it has to stay there.