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Main Forums => Living With HIV => Topic started by: achim-martin on February 19, 2008, 03:10:26 pm

Title: Virus load below detection?
Post by: achim-martin on February 19, 2008, 03:10:26 pm
To find out, if there is a considerable number of guys who had a successful treatment that even got them to below detection for whatever reason I'd like to collect some data. Maybe you can also add some secrets you consider worth to tell, as well.
Important:  being below detection after those various options for more than 1 year...
Title: Re: Virus load below detection?
Post by: Miss Philicia on February 19, 2008, 03:36:03 pm
****post withdrawn to express my dissatisfaction with this poll***
Title: Re: Virus load below detection?
Post by: thunter34 on February 19, 2008, 03:45:12 pm
took about a year + or - to get to und with HAART.  been there ever since.  starting to cause some significant lipodemia issues (in addition to years of Jet AssTM ), so combo due to soon change.
Title: Re: Virus load below detection?
Post by: minismom on February 19, 2008, 06:17:23 pm
Mini was on HIV meds (AZT) since she was born.  At 8wks old, she was put on her 1st official "combo".  She was on several different combinations of meds until she finally had her genotyping in January 2002.  In February 2002, she was put on Zerit, Kaletra, and Susteva.  4mths later, her VL was undetectable and has been ever since - nearly 6yrs.  Because of lipid / cardiac effects, we changed her Susteva to Viramune in Jan. 2008.  That lasted 11 days and was stopped after she had a reaction to the Viramune.  She's been on Zerit and Kaletra only since then.  Her VL continues to be u/d and her t's are the highest they've ever been. We're not adding a 3rd med unless her numbers plunge.  New med change in serious consideration: viread instead of Zerit.

Mum
Title: Re: Virus load below detection?
Post by: heartforyou on February 19, 2008, 06:59:42 pm
My viral load of 5.000.000  ( five million per ml³) in June 1995 plummeted after starting HAART and I got undetectable in 3 months time.... and never got detectable again in almost 13 years.

The prize of this all : more then 10 combo changes, toxic hepatitis, severe anemia, nausea.....

But no side effects since my last change three years ago...

Hermie
Title: Re: Virus load below detection?
Post by: AlanBama on February 19, 2008, 09:39:07 pm
I guess I don't understand the 'choices' in the poll.   Is there actually anyone in the forums who has stopped HAART after ten years?   There are certainly plenty of us who have been on it that long and much longer, but is there someone who has stopped it after that many years of taking it?   I know some of us have had to stop at some time or another, due to kidney or liver issues, but doubt that anyone remained undetectable after doing so....maybe I will learn something here.  

Anyway, I have been able to achieve and maintain an undetectable status for quite a number of years, with the exception of a few 'blips'.

See, they have determined that those of us who underwent AZT monotherapy in the 80's are mutant humanoids, and nothing can kill us (just kidding!)....but actually there is a lot of truth to it.... ;D
Title: Re: Virus load below detection?
Post by: OzPaul on February 19, 2008, 10:33:26 pm
As AlanBama says, I'm a 'mutant humanoid' of another sort,  that being an LTNP- Long Term Non Progressor and am also sometimes referred to as an 'elite controller' by virtue of the research study I'm enrolled in.  As such I have not had a detectable viral load since those tests began and was tested positive in 1985. I likely became infected in 1981.

I am one of a number of LTNP's here at the forums.

I count my blessings every day.

Cheers
Paul
Title: Re: Virus load below detection?
Post by: aztecan on February 19, 2008, 11:40:09 pm
I went undetectable after four months of starting meds.

I started meds in March 1996 and was undetectable in July 1996, or was that June?

Anyway, it'll be 13 years undetecable this year - depending, of course, on whether the last round of labs still are less than 50.

HUGS,

Mark
Title: Re: Virus load below detection?
Post by: John2038 on February 20, 2008, 12:26:38 am
Would it be possible to add in the pool those who aren't undetectable, to get this proportion as well ?
Title: Re: Virus load below detection?
Post by: achim-martin on February 20, 2008, 06:49:05 am
I had set up the poll like this on purpose.
In a thread someone spoke about his friend who stopped after 10 years and continuos that for 3 years now - he claimed no resistant strains had developed since then, but did not point out if any virus got back in the results, so I figured it would be quite interesting to hear from long term survivors how they do that, on med or without.... Am sure, some have tried that...   

In yet another poll we can then ask for other infected guys, that are not undetectable for whatever reason with various options. Target is another group though.
Title: Re: Virus load below detection?
Post by: Dachshund on February 20, 2008, 08:35:20 am
 Maybe you can also add some secrets you consider worth to tell, as well.

No secrets or silly polls necessary. Howl at the moon or bathe in selenium it really doesn't matter when it comes to HIV. For the vast majority it's adherence to your meds pure and simple.

edited for typo
Title: Re: Virus load below detection?
Post by: achim-martin on February 20, 2008, 09:30:17 am
Please continue writing your personal situation and yes - "secrets".  As it turns out with the above messages its truly quite interesting to collect individual experiences so compact in one thread.
Title: Re: Virus load below detection?
Post by: Dachshund on February 20, 2008, 09:38:45 am
Please continue writing your personal situation and yes - "secrets".


If we told you then it wouldn't be secret.
Title: Re: Virus load below detection?
Post by: sharkdiver on February 20, 2008, 10:07:42 am
let me see...
been undetectable a couple of times in the past 23 years.... never stayed there long but my virus has never been higher than 20k (even with breaks some 3 years at a time)
still continue to have an AIDS diagnosis due to percentages and numbers and all the other crap involved with that (have had some ups and downs and long stays in the hospital blah blah blah).   

For me (and I am only talking about my body), the undetectable thing is overrated. I have felt the sickest in my life when my CD4 count has been too low or too high. In fact, I have been hospitalized more times when my CD4 count has been too high.  But that is just me and my virus and my experiences.

Sharkie
Title: Re: Virus load below detection?
Post by: Miss Philicia on February 20, 2008, 10:08:45 am
Trust... you don't want to know my secret for maintaining +1000 cd4s for the past year:  cigarettes, coffee and benzo addiction.  Indeed, there goes out the window all of you folk's silly little selenium and ginseng tricks.

Hmmm... guess my HIV meds actually work because I take them every day on time.
Title: Re: Virus load below detection?
Post by: Dachshund on February 20, 2008, 10:14:58 am
Ok, Ok, you twisted my arm, I'll give you my secrets.

Barbecued pork, Diet Dr. Pepper and Little Debbie Cakes. It couldn't possibly be the Prezista, that would be too easy. ;)
Title: Re: Virus load below detection?
Post by: BT65 on February 20, 2008, 10:18:22 am
Me?  diet Pepsi, Doritos and cigarettes.

Betty
(who wonders what meds have to do with anything) ;)
Title: Re: Virus load below detection?
Post by: sharkdiver on February 20, 2008, 10:20:23 am
LOL

teehee
Title: Re: Virus load below detection?
Post by: jabez on February 20, 2008, 11:42:09 am
I'm already doing the barbeque pork, cigarettes, and Little Debbie Snack Cakes.  I haven't tried howling at the moon or bathing in Selenium yet.  But I'm always willing to try something new.   :)
Title: Re: Virus load below detection?
Post by: wishful on February 20, 2008, 12:43:44 pm
i started meds in Oct 03, was u/d by November..Been undetected ever since..same meds...No side effects...
Title: Re: Virus load below detection?
Post by: BT65 on February 20, 2008, 02:37:31 pm
I am wondering if the author of this thread is HIV+ himself.
Title: Re: Virus load below detection?
Post by: achim-martin on February 20, 2008, 02:51:22 pm
ok,ok I got your message..., glutamat and nicotin aren't all THAT bad...   ;)

First, since some have asked again if I am positive myself:  No, as stated before I am not positive. My partner/lover whith whom I live for almost 25 years now, got infected in 1996 and I go through all of this together ever since. The finding it out, the blames, the worries, the anxieties, the fight against the illness and the hope. He's not so good in english, so usually I am the one in the family that does the acquiring of information, sharing information, going to english forums, reading articles and books about it etc. 

Accoring to our experiences the vital thing is to take the meds regularely as prescribed, possibly not a day without them.
Which brings me always to the question, how to do that in real life? There are always times of illness or accidents, where you can't take them, or where they won't be digested properly etc.  Then what?
And my personal idea is to try to eliminate as much as possible virus in its reservoirs. Where is it, where can it possibly be hidden? Have given that a lot of thought and studies over the last 12 years.  My partner tried to eliminate it with this Interleukin II therapy 8 years ago, which seemed to be successfull - at least in the cd4 cells there was nothing left.
Another trick - we don'T know for sure if that really works or not - is to do a lot of different vaccines:  flu, tuberculosis, pneumonia, hepatitis a/b, etc.... don't know all the english expressions for this.  Well, he did those after his cd4 counts were above 1.000 and his body coped quite well with them. We hope to trigger the virus with that, and in conjunction with HAART eliminate the now free virus cells in the bloodstream.

The other tricks, if you may call them, are simply not too much alcohol to give the liver a break, zinc each day and natural vitamins.  Before starting HAART and the first three months he also took some protein drinks to help his body to produce all those antibodies etc. without touching protein reservoires in the body mass, like muscles. 

Now, 10 years later he lives an absolute normal standart life, no strict diet, no illnesses - except that he takes his pills precisely as prescripted. Its good and a blessing not to be alone with it, cause if one forgets to take the pill the other one will notice. Besides - love is always a blessing and I am so grateful to be his lover!  His blood figures are better than my own, even the fat figures.   
Title: Re: Virus load below detection?
Post by: Miss Philicia on February 20, 2008, 03:00:03 pm
With all due respect, it seems like there's a bit of unnecessary anxiety somewhere, and it's causing you to invent novel "secret" HIV therapies instead of following your doctor's advice based on sound research.  Is your partner not achieving viral suppression on HAART.  I could swear you stated he's successfully been on the same combo for years, so why are you inventing worries where there need not be any?

I question the motive for doing all of this, and must ask if you've sought out a good mental health professional to discuss this issue.
Title: Re: Virus load below detection?
Post by: Matty the Damned on February 20, 2008, 03:10:05 pm
Martin,

You need to calm down honey. Whilst all of this stuff you're doing with your partner is very interesting you need to understand two things:

1. There's no scientific evidence that most of it useful in treating HIV infection (ie zinc, protein shakes and vitamins)
2. That you shouldn't trying to shove this stuff down people's necks as though it is.

The poll you've posted at the top of this thread is nonsense. It has no scientific validity and the information it gathers will be meaningless.

As you've noted HAART (and the proper compliance with HAART) is the only way we currently know to treat HIV infection.

Now doll, I appreciate your zeal on behalf of your lover but really you're coming on a bit strong and it's irritating. Why don't you ratchet back the enthusiasm a notch or two?

MtD

Title: Re: Virus load below detection?
Post by: Dachshund on February 20, 2008, 03:14:15 pm
Which brings me always to the question, how to do that in real life? There are always times of illness or accidents, where you can't take them, or where they won't be digested properly etc.  Then what?  

This statement is just absolute nonsense and does nothing but feed the anxiety that the newly positive are dealing with. You really need to think about what you post in I Just Tested Poz and be very careful when it comes to giving advice.  
Title: Re: Virus load below detection?
Post by: achim-martin on February 20, 2008, 08:35:59 pm
With all due respect, it seems like there's a bit of unnecessary anxiety somewhere, and it's causing you to invent novel "secret" HIV therapies instead of following your doctor's advice based on sound research.  Is your partner not achieving viral suppression on HAART.  I could swear you stated he's successfully been on the same combo for years, so why are you inventing worries where there need not be any?

I question the motive for doing all of this, and must ask if you've sought out a good mental health professional to discuss this issue.

Needless to say that I am more than disappointed in your replies. Do you guys have other suggestions than seeking mental therapy or taking prozac? I am not going to continue this and can only hope some people are able to look beyond for therapies in the future.
Title: Re: Virus load below detection?
Post by: achim-martin on February 20, 2008, 08:41:55 pm
Dachshund: when somebody newly infected is asking for help, suggestions like get a good sleep are certainly nice, but not more. He wants a solution or suggestions from people that were successfull, maybe results from studies he can relate to. Baby blabla will not help him...

I am not the one who is "inventing worries", but was trying to help.  Reality is a fact.
The studies I mentioned are obviously not important to you.  Please be so kind and don't tell people to just calm down and do nothing for the start...
Ok you guys, take good care for yourselfes and good luck to all of you. Bye.
Title: Re: Virus load below detection?
Post by: Matty the Damned on February 20, 2008, 08:46:30 pm
Bye!

MtD
Title: Re: Virus load below detection?
Post by: sharkdiver on February 20, 2008, 08:47:38 pm
Ciao
Title: Re: Virus load below detection?
Post by: Ann on February 21, 2008, 07:51:21 am
Martin,

As someone who is not hiv positive, you might want to think more carefully about giving out advice in these forums. We do have many hiv negative members who post in the forums meant for hiv positive people, but they don't go around telling positive people how to run their lives or treatment. They don't get the kinds of responses you have, and for that very reason.

You might want to consider posting only in the "Someone I Care About Has HIV" forum, which is the forum set up for people such as yourself. Leave the treatment advice and suggestions to those of us who have actual, first-person, hands-on experience or medical training.

Ann
Title: Re: Virus load below detection?
Post by: achim-martin on February 21, 2008, 07:59:05 am
I have said several times, that my partner/lover has been positive since 1996 and we're struggling with this, going through this together. Since his english isn't so well I am the one who wrote the messages - cause we figured it is vital to share own experiences, especially since we have had positive results with them.
People who recommend a good sleep and healthy diet are welcome, people who recommend early treatment, which has been proven in the latest studies (seen on another thread) as well, are not welcome.
We just hope some newbies do read very carefully about this and find a proper helpful solution for themselves, before its too late for them. I myself am very disappointed about some of the reactions of a few members here who not seem to be able and wanting to accept other opinions than their own.  Telling me to find mental help and being a highjacker is outrageous but it tells a lot about some of the members here. Asking me why I would care since my partner does not have resistant strings anyhow is hard to accept.

So, I am leaving this forum and hope you will have a good time here in the future.  Bye
Title: Re: Virus load below detection?
Post by: majykman on February 27, 2008, 09:54:46 pm
I was diagnosed in December 1999. I started HAART at the end of January 2000 and have been undectable since May 2000. I've been on the same meds pretty much since the beginning (Sustiva & Trizivir). After a lengthy discussion with my Dr., he suggested that I switch to Atripla. I still has the Sustiva in it, plus two other meds from the NRTI group. He feels this would be an even better regimen for me while saving me some money in co-pays.
Title: Re: Virus load below detection?
Post by: sharkdiver on February 27, 2008, 10:02:48 pm
die thread die