being a hep c vet, having done the treatment for 48 weeks, with sustained viral response (nondetectable) for a year and a half now, i've been given the blessing by my specialist and am good to go (cured in his words). i don't see this on the HIV side, not sure what the reasoning is, perhaps a liability issue maybe just not sure of the longterm results, but my assumption would be simillar, if someone has done a regimen of HIV meds for a year and has been nondetectable, wouldn't it make since to stop the meds and monitor blood levels every 3-4 months for the next few years to check for the virus and other variations? i've read suggestions that the hiv virus 'could' survive in other tissues but if it's not activated it can't do anything. if it returns, the next option would be to go back on meds. and by that time in the future, something better may come along.

No, this doesn't make sense and I think that the two diseases have to be treated differently. Certainly, as we know it, HIV is not curable and that, while your T-cell count and viral load could shift depending on a number of issues, that you are on medications (retrovirals, etc) to control the disease, would be an indication that you would need to remain on them.

When others start responding to your post, they will probably issue the same edict. For example, I think that it is that I have been on meds for the past eleven years is what has kept my viral load at an undetectable level. Similarly, I have blood draws done quarterly, but this is to record and monitor the detectable levels of HIV in the system as well as monitor T-cells, percentages, etc. I'm not sure what the notion is of a "drug holiday" is anymore and know that it was once something that was tried by some physicians.

But, to repeat myself, do not assume that because you have been taking your HIV meds for a year and are undetectable, that you don't need to take those meds anymore. chris

ok, so you've been nondetectable for 11 years b/c of meds. have you tried going off the meds for awhile monitoring bloodwork at 3, 6, 9, and 12 months to see if you are still nondetectable? i would think that the best way to see if these meds are working is to go off of them for awhile to see if a recurrence in hiv viral happens as well as t-cell count.

Remember what I had told you befor hiv hides in very large concentrations in the lymphnodes , bone marrow , brain and nerve tissue , testicals and also the spleen .
The medications can slow down and even almost stop it from replicating thus making it undetectable in the blood and that's why it is undetectable in a ( PCR )
And also if you stop you're medications or miss doses or not take them at the right times every day it give the virus a chance to mutate and become resistant and a total medication change of 1 or all you're antiretroviral medications would be needed .
Hepatitis-C is also a ( RNA BASED VIRUS ) but not as adaptable as hiv when it comes to infecting the human body .
If you have been taking you're medication for 1 year and you're viral load is undetectable ...............
DON'T STOP !
.............. Lost Spirit ..............

Thanks, L.S.

The point is, in part, why would I want to stop taking my medications when I know that they are working, my doctor is convinced that, at this time, this is the best way to treat the disease, there is no data to support not taking the medications and plenty of data the supports retroviral therapy? It would seem to me that this is really playing Russian roulette. If you go off the meds and your T-cell count goes down and the virus becomes detectable, then aren't you defeating the purpose of being on the regimen in the first place? chris

so ultimately, if you are undetectable after a period of time (let's say a year) and you stop meds, down the road you risk a possible mutation and reinfection of the virus. what about biopsies of the listed organs to check for presence post treatment or are those possible on those organ tissues? had a liver biopsy about 5 years ago for presence check of hep c; not too bad. chris, thanks again for the info. loving the discourse on this.
dave

Chris you said you're T cell count went up for the first time in years .
I'm curious by how much ?
And also I'm impressed at how well you have done during the last 11 years of treatment ..
Meaning ... It seems like you're doctors have pretty much stoped the virus dead in its trax . And also kept in check .
DAVE ......
When a doctor or nurse recieves an accidental needle stick they are started on a course of ( PEPS ) for 8 weeks which is a super highly powerful ( PREVENTATIVE ANTI-RETRO-VIRAL ) and in some cases after they are finished with the ( PEPS ) treatment started on a lower grade of medications for another 8 weeks .
( PEPS ) can be affective BUT in some cases the individual may show to be positive up to 12 months after exposure .
Studies have shown that an infected person on medications that have stopped treatments have also shown a detectable viral load at and up to 18 months after medication has stopped .
If you are on medications and you're viral load is undetectable that means that the infection is if not stopd to almost a total stand still very close .
Which also means that it canot spread further through you're system thus doing less damage .
Hiv can infect any of the class of white blood cells ........ BUT ...........
Studies have shown that hiv doesn't realy bother the (B-LYMPHOCITES ) which generate the ( ANTIBODIES ) but don't get me wrong once again hiv can infect any of the white blood cells .
The T-cells make up about 30% of the white blood cells .
But .......
Even though the other white blood cells can and do get infected they don't die right off and can still perform there normal function .
The T-cells take the most casualties during the immune systems war on hiv .
And that's how hiv is able to spread through the body .
A white blood cell doesn't know it is infected and can carry it ( just about anywhere )
The moral of this story is ...........
Stay on you're meds and don't give it a chance to mutate .
I've been positive for 15 years my T-cell count is at 1,000 ( normal range is 1,500 to 1,100 )
Myself and Chris take our meds and live our lives ......... And you can do the same ;)
You caught it early and didn't give it a chance to ( knock you're legs out from under you ) ............ SO STAY ON YOU'RE MEDICATIONS :nono:
.............. Lost Spirit .........

I'm just curious, and no one has to answer this if they don't feel comfortable, but how much medicine are you on? Is it different for each person? I just remember when I was growing up (90's scare) that the thought was a person needs alot of medicine to stay healthy, but then i read articles about "cocktail" therapy and whatnot, but i wasn't sure. I would like to me more educated about medicine and that sort of thing
Thanks guys :)
-Sarah

There are many many different kinds of ( ANTI-RETRO-VIRAL MEDICATIONS ) that can be used ranging from 2 - 3 - even 4 different kinds of medications at one time a person can be put on .
Its more like a game of ( MIX N MATCH )
It doesn't realy matter what you're combination is ....... Just as long as you get the wanted results .
Like I said befor if has hiv has a chance to sneak up on you IT WILL .
So catch it as early as posible and get it under control .
I myself have never had thrush , mouth ulcers , night sweats , rashes , nothing .......
So don't rely on symtoms if you feel you have in fact been exposed you realy do need to get tested not just for peace of mind but also earliest possible detection and control of the virus .
In good health ...........
............. Lost Spirit ................

I'll try to answer my part of the questions posed as honestly as I can.

Sarah: You can ask me anything, anytime. We've been posting here since March so I think you and I are pretty open with each other. I'm on 4 meds for the HIV: Epivir (one table twice a day), Norvir (one capsule twice a day), Agenerase (four capsules twice a day) and Viread (one table once a day). In addition, I'm on 10 mg of Prozac (just to keep the devils away) which I seem not to take religiously and on Prevasic for a slight case of gastric distress. Since the removal of the spleen in May, my doctor has discontinues Toprol XL (for blood pressure issues) and Provochol (for cholesterol issues). I have a really, really good friend (I'll call him Dr. B and to whom I thank the Gods) who was the PCP the tested me for HIV and is now working in education and research, but with whom I e-mail weekly, who has suggested that there are new medications that I may be able to try that would reduce the meds to may three different medication taken once or twice a day. And, yes, I have been other meds (but mostly the current medications for the past six years. I was taking Zerit until June of last year when we discontinued that and I started on Viread) and started on AZT and Zerit and Epivir 11 yrs ago.

LS: When I found out I was HIV +, my T-cell count was 200 (meeting CDC definitions) and has never gove above that. Simultaneously, my viral load has been undetectable for the past 11 yrs. The lowest my T-cell count has gone was 94 and is now at 144 (in early June, post-op). As my friend, Dr. B., has suggested (because I have a tendency to do this ("Don't get hung up on the numbers! They're only numbers! Tell me how you feel!")

Dave: A couple of things - I wonder why, if your viral load is undetectable, would you want to stop taking your meds? This confounds me. But, regarding your question about biopsies: it is unlikely that you would be able to biopsy all the organs where HIV may be hiding. Also, it is unlike that a doctor would want to biopsy all the organs because obtaining a biopsy is an invasive procedure and invasive procedures are always subject to the risk of infections. Also, I would doubt that you could or would want to find a doctor who would be willing to write orders to biopsy those organs that were causing you problems (if you knew) just because you wanted to play INdiana Jones (remember, you would need to test all of your lymph nodes, etc). Also, I doubt that an insurance company would cover the cost of these procedures when there are blood tests that can provide you with the necessary information.
So, as LS said, he and I take our meds and live our lives. For me, there are down-times for sure. This past May, when I had to have surgery, was certainly one of the most difficult, (But I tend to be dramatic and a hypochodriac - not a good combination) and I was able to get through it because of this post, my family, and incredible doctors (a bus full of rabbis, several priests, a heavy set nun, an Abbey in Michigan, and a couple of Pentacostals also helped.). But, overall, life is good, very good and there are more (many, many more) good days than bad. I cannot ever remember a time when I was sick from this disease although I have been sick of this disease on at least one occassion. Hang in there....keep us in the loop. chris

again, i'm learning as i go, and doing some brainstorming. just diagnosed and have first appointment in a couple of weeks so will get back to you on V.L. but being a vet with another illness (hep c), it just seems to me that the true way to see if the meds work for longterm would be to stop taking for awhile to see how the body adjusts to it. i know there's a risk of mutation, but it just seems horrible to take the meds for so long.

It really isn't horrible. You'll want to eval for contraindications and for side effects. But lots of people take meds - some diabetics have to inject insulin once or twice a day, many patients who are hypertensive have to take blood pressure medications daily, etc. etc. etc. Do you like the doctor and do you feel confident with him/her? That will go a long way to determining your participation in your own care. chris

Ok, I see. So the cocktail therapy is referring to the different types of meds peopel can be put on to fit thier specific needs? So in that case, is it always Antiretroviral meds that are considered part of "cocktail therapy", or is it also blood pressure meds etc?
PS-for those little devils, i found some solace in zoloft,...just a thought.

Pretty much that's correct. Usually the drug cocktail (and I know that Lost Spirit and PanaSonique can probably answer better than I) refers to the retrovirals. I think that other issues (hypertension, etc) are addressed separetly and are not considered part of the cocktail regimen. I think I'm on the Prozac becuase of the way the others interact with the retrovirals. chris