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Main Forums => Living With HIV => Topic started by: John2038 on May 26, 2008, 05:17:28 pm

Title: LTNP monotherapy ?
Post by: John2038 on May 26, 2008, 05:17:28 pm
Spent 2h on the net looking for LTNP + Monotherapy but can't find any interesting study on that.

I guess studies must exists, at least before the HAART era.

The question is:

could a monotherapy be beneficial for LTNP  ?

(thinking to Kaletra for e.g.)

EDIT  LNTP >> LTNP
Title: Re: LTNP monotherapy ?
Post by: Ann on May 26, 2008, 06:29:05 pm
Strictly speaking, Kaletra isn't monotherapy.

Kaletra (http://www.aidsmeds.com/archive/Kaletra_1559.shtml)is actually two drugs combined into a single capsule: lopinavir and low doses of ritonavir (Norvir), another protease inhibitor manufactured by Abbott Laboratories. This is because ritonavir increases the amount of lopinavir in the blood, thus making it more effective against HIV.
Title: Re: LTNP monotherapy ?
Post by: RapidRod on May 26, 2008, 06:33:09 pm
If you're a LTNP there is no reason to be taking any medication. Your body is controlling the infection itself. I was a LTNP for 21 years and never on any medication.
Title: Re: LTNP monotherapy ?
Post by: J.R.E. on May 26, 2008, 06:48:05 pm
If you're a LTNP there is no reason to be taking any medication. Your body is controlling the infection itself. I was a LTNP for 21 years and never on any medication.


Those were my thoughts also. If you are undetectable, whats the need of medication. Monotherapy or anything else, unless I am missing something here. I was diagnosed positive in 1985. In 1999, I had a 900 t-cell count and a viral load in about the same range. By 2003, 16 t-cells and 500,000 viral load. go figure... Of course, I would have done things differently looking back, but can't do that either.


Ray
Title: Re: LTNP monotherapy ?
Post by: Miss Philicia on May 26, 2008, 07:02:24 pm
Wouldn't it make sense to let some "long time" pass before trying to diagnosis yourself as a LONG-TERM non-progressor?
Title: Re: LTNP monotherapy ?
Post by: RapidRod on May 26, 2008, 07:44:48 pm
With me it was several years and 12 tests before I was declared a LTNP.
Title: Re: LTNP monotherapy ?
Post by: Matty the Damned on May 26, 2008, 08:09:53 pm
And you were very ill at many times from HIV related disease in the past, weren't you Roddles?

MtD
Title: Re: LTNP monotherapy ?
Post by: thunter34 on May 26, 2008, 08:27:53 pm
Wouldn't it make sense to let some "long time" pass before trying to diagnosis yourself as a LONG-TERM non-progressor?

*sigh*  You're such a procrastinator, phillicia.
Title: Re: LTNP monotherapy ?
Post by: shadowfluid on May 26, 2008, 09:23:05 pm
Wouldn't it make sense to let some "long time" pass before trying to diagnosis yourself as a LONG-TERM non-progressor?

I think he's just wishing he's a LTNP.  And who wouldn't?  I thought a decade would have to pass in order to label oneself that.
Title: Re: LTNP monotherapy ?
Post by: thunter34 on May 26, 2008, 09:27:24 pm
I think he's just wishing he's a LTNP.  And who wouldn't?  I thought a decade would have to pass in order to label oneself that.

Yes, HIV is the one area of my life that moved ahead of schedule.  Typical.
Title: Re: LTNP monotherapy ?
Post by: RapidRod on May 26, 2008, 09:51:00 pm
And you were very ill at many times from HIV related disease in the past, weren't you Roddles?

MtD

Yes, I almost died twice.
Title: Re: LTNP monotherapy ?
Post by: redhotmuslbear on May 26, 2008, 09:52:33 pm
I think he's just wishing he's a LTNP.  And who wouldn't?  I thought a decade would have to pass in order to label oneself that.


It took only 6 months off meds before NIH threw genetic testing at me to label me an LTNP in light of my past.  My doc at Dx ten years ago thought about it often, given my history;  but with my viral load soaring near 700K and CD4s dipping near 200 while battling hep A, he felt that I needed to get on old-school HAART ASAP.  Later, we did Ziagen monotherapy for over two years with viral suppression below 50 copies, in his mind to acclimate me to the notion of being a LTNP, but I kept clinging to meds for a couple more years.

As for wishing to be an LTNP, I don't believe that anyone who isn't one can completely grasp the additional layer of apartheid that we may feel.  The experience with HIV is markedly atypical of the norm, so I'm cautious of being taking a public label as an HIVer, even if pics of my daddyliciousness and my biohazard tat have been all over the internet.  Then, there's feeling an additional responsibility for the care of my physical form, not only as an embodiment for my spirit, but also as a source of academic curiosity.  And, lastly, it's the inabilty to comiserate authentically about OIs and other crap that comes along with the disease which I'll likely never experience.  I may have washed the KS-covered bodies of friends, read to and fed those with CMV retinitis or PML, and dished out tons of pointers on thrush care, but I am unlikely to personally experience any of it.

Namaste,
David
Title: Re: LTNP monotherapy ?
Post by: shadowfluid on May 26, 2008, 11:17:00 pm

It took only 6 months off meds before NIH threw genetic testing at me to label me an LTNP in light of my past.  My doc at Dx ten years ago thought about it often, given my history;  but with my viral load soaring near 700K and CD4s dipping near 200 while battling hep A, he felt that I needed to get on old-school HAART ASAP.  Later, we did Ziagen monotherapy for over two years with viral suppression below 50 copies, in his mind to acclimate me to the notion of being a LTNP, but I kept clinging to meds for a couple more years.

As for wishing to be an LTNP, I don't believe that anyone who isn't one can completely grasp the additional layer of apartheid that we may feel.  The experience with HIV is markedly atypical of the norm, so I'm cautious of being taking a public label as an HIVer, even if pics of my daddyliciousness and my biohazard tat have been all over the internet.  Then, there's feeling an additional responsibility for the care of my physical form, not only as an embodiment for my spirit, but also as a source of academic curiosity.  And, lastly, it's the inabilty to comiserate authentically about OIs and other crap that comes along with the disease which I'll likely never experience.  I may have washed the KS-covered bodies of friends, read to and fed those with CMV retinitis or PML, and dished out tons of pointers on thrush care, but I am unlikely to personally experience any of it.

Namaste,
David

off topic...I've always wondered if LTNPs are protected from HIV-associated dementia
Title: Re: LTNP monotherapy ?
Post by: John2038 on May 27, 2008, 01:11:42 am
Later, we did Ziagen monotherapy for over two years with viral suppression below 50 copies

What was the reason to interrupt the monotherapy after 2 years ?

Thanks
John
Title: Re: LTNP monotherapy ?
Post by: RapidRod on May 27, 2008, 06:23:29 am
If one is a LTNP there is no reason what so ever to be on monotherapy. When your CD4s decide to crash, they crash. Enjoy being a LTNP as long as you can.
Title: Re: LTNP monotherapy ?
Post by: John2038 on May 27, 2008, 07:21:56 am
The question is will the immune system stay up longer on monotherapy compared to without, what should make sense.
Of course, the drugs are toxic, so a study would be welcome.

In more, we know if we are LTNP after so many years that it's impossible to think "in 10 years, I start to be on meds"

Another reason why a study can be important.
Title: Re: LTNP monotherapy ?
Post by: Peter Staley on May 27, 2008, 09:47:04 am
Strictly speaking, Kaletra isn't monotherapy.

Kaletra (http://www.aidsmeds.com/archive/Kaletra_1559.shtml)is actually two drugs combined into a single capsule: lopinavir and low doses of ritonavir (Norvir), another protease inhibitor manufactured by Abbott Laboratories. This is because ritonavir increases the amount of lopinavir in the blood, thus making it more effective against HIV.

Ann -- I think most researchers consider it monotherapy, since the Norvir is only used as a booster, and not as an antiviral.  That's why all the studies looking at Kaletra alone are called "Kaletra monotherapy studies."  In turn, if Reyataz + Norvir were studied alone, it would still be called a Reyataz monotherapy study.

Ohhh -- I got to correct Ann!!  Maybe she'll ban me!

Holding my breath,

Peter

P.S.  The original question will probably never be answered.  Since LTNPs can take 10-20 years to progress (or longer), no one will ever do a study to see if putting them on ANY early therapy extends that time range even further.
Title: Re: LTNP monotherapy ?
Post by: thunter34 on May 27, 2008, 10:39:46 am
P.S.  The original question will probably never be answered.  Since LTNPs can take 10-20 years to progress (or longer), no one will ever do a study to see if putting them on ANY early therapy extends that time range even further.

How could you ever know anyway?  Wouldn't that be trying to prove a negative, so to speak?  How could anybody know when someone "would have progressed" in the first place?
Title: Re: LTNP monotherapy ?
Post by: sharkdiver on May 27, 2008, 11:01:30 am
I don't mean to be rude, but

Maybe we can better help John if he had a thread about this and related subjects such as bimazek does?  It's getting hard to keep track of all of these similar posts of his throughout the forum and he definitely has questions that are important to him.

just a suggestion.
Title: Re: LTNP monotherapy ?
Post by: redhotmuslbear on May 27, 2008, 11:52:29 am
P.S.  The original question will probably never be answered.  Since LTNPs can take 10-20 years to progress (or longer), no one will ever do a study to see if putting them on ANY early therapy extends that time range even further.


I believe the situation is even more convoluted.  With the medical rush to treat and the human instinct for self-preservation, newly infected potential LTNPs will overwhelmingly go unnoticed and "needlessly" take years of meds, though their systems could have fared well without them.  Most docs and new HIVers don't grasp the CD8/CD4 equillibrium at play in many LTNPs, and they'll go for the pills after a couple successive labs with CD4 decline and detectable bugs, though the CD8s may be screaming "Look at us!  We're kicking HIV ass!"

Still, the answer to ferreting out potential LTNPs shortly after infection would involve a new standard of care for the newly infected which our medical spending and our individual tolerances for uncertainty would not tolerate.  Delta-32 screening and HLA-B haplotyping for the newly infected could point to potential LTNPs, but at a high cost for what the holders of purse strings would surely judge as a small yield.  Educating doctors, clinic cousenlors, and the public about LTNP immune response patterns and the "need" to wait out HAART initiation would be an even more difficult morass.  However, that's what we'd need to identify more LTNPs early, instead of stumbling upon us after years of blissful ignorance.

Namaste,
David
Title: Re: LTNP monotherapy ?
Post by: Dachshund on May 27, 2008, 12:51:41 pm
I sure do miss the resident scientists and doctors who use to post around here. They did such a wonderful job of explaining topics like this in laymen terms. No gobbledy goop, frills or opinions to confuse the issue,
just scientifically based facts.
Title: Re: LTNP monotherapy ?
Post by: Basquo on May 27, 2008, 12:52:34 pm
I don't mean to be rude, but

Maybe we can better help John if he had a thread about this and related subjects such as bimazek does?  It's getting hard to keep track of all of these similar posts of his throughout the forum and he definitely has questions that are important to him.

just a suggestion.

I'll second that.  The question was already here: http://forums.poz.com/index.php?topic=21000.0 (http://forums.poz.com/index.php?topic=21000.0) but I guess there weren't enough responses so the question was reposted in this thread.

John, I think you should have bumped your original thread instead of starting a new one.  Now you have to look two different places for your answers.
Title: Re: LTNP monotherapy ?
Post by: Miss Philicia on May 27, 2008, 12:59:18 pm
Wow... and only one week apart.

*sigh*

::checks off OCD on tally sheet::
Title: Re: LTNP monotherapy ?
Post by: OzPaul on May 27, 2008, 01:28:04 pm
It is an interesting theory as to when, or whether we LTNP's will progress as some have. The LTNP  researchers that I work with say that while it is likely that I won't progress it is not by any means a guarantee.  I hold my breath each time I participate in a study, waiting for the results. I count each healthy day as a blessing, not a sure thing,even after 27 years.

Paul
Title: Re: LTNP monotherapy ?
Post by: sharkdiver on May 27, 2008, 02:40:07 pm
I'll second that.  The question was already here: http://forums.poz.com/index.php?topic=21000.0 (http://forums.poz.com/index.php?topic=21000.0) but I guess there weren't enough responses so the question was reposted in this thread.

John, I think you should have bumped your original thread instead of starting a new one.  Now you have to look two different places for your answers.

seems to be the pattern.  He definitely needs help but it's hard to track down what he's asking for.
Title: Re: LTNP monotherapy ?
Post by: RapidRod on May 27, 2008, 04:33:39 pm
The question is will the immune system stay up longer on monotherapy compared to without, what should make sense.
Of course, the drugs are toxic, so a study would be welcome.

In more, we know if we are LTNP after so many years that it's impossible to think "in 10 years, I start to be on meds"

Another reason why a study can be important.

Let me tell you after enjoying being a LTNP for 21 years. I'm now taking Atripla. Just be thankful you have that chance at going for a long period of time without medication.
Title: Re: LTNP monotherapy ?
Post by: srmn98 on May 28, 2008, 11:41:09 am
Hi John,

I think it's an interesting idea that you put forth.

Based on a link you provided in another thread:

http://bloodjournal.hematologylibrary.org/cgi/content/full/104/4/942 (http://bloodjournal.hematologylibrary.org/cgi/content/full/104/4/942)

It says in the above link that (as Paul says), some Elite Controllers do experience CD4 depletion despite controlling viral replication. It is possible, as I understand it, to progress to AIDS even in the absence of a measurable viral load. This is news to me -- the link above is the first news I personally have seen of this as a possibility.

This being the case, there might indeed be benefit of some kind of drug therapy for elite controllers if their T-cells start to fall.  I don't have any answers but it is an interesting question.

I think too often people take science as fact and forget that science is always evolving. What we learned about HIV/AIDS yesterday might get updated tomorrow. We should all keep that in mind.

Sara



Title: Re: LTNP monotherapy ?
Post by: John2038 on May 28, 2008, 12:04:37 pm
This being the case, there might indeed be benefit of some kind of drug therapy for elite controllers if their T-cells start to fall.

Hi Sara,

The EuroSida risk calculator (http://www.cphiv.dk/TOOLS/EuroSIDARiskScore/tabid/281/Default.aspx) shows that being on meds reduce (*) by 7 the risk of AIDS/death per year.

As such, it might provide a partial answer.

John

(*) using my parameters
Title: Re: LTNP monotherapy ?
Post by: srmn98 on May 28, 2008, 12:33:56 pm
John,

I'm not sure if that risk calculator can really tell you anything .... although your question is still interesting to me. Some things cannot be predicted.

Best of luck,

Sara

Title: Re: LTNP monotherapy ?
Post by: redhotmuslbear on May 28, 2008, 02:33:39 pm
I'm not sure if that risk calculator can really tell you anything ....


Well, it's certainly meaningless if one is in an actual effective LTNP category, as the weight given to ARVs becomes meaningless, as does the facotring of viral rebound that must occur in the background.

As I indicated earlier, the prospects of organizing a meds study on LTNPs don't appear good, given the current state in disease management and the prohibitive cost of testing for LTNP characteristics along with, for instance, running a Western Blot or the first set of viral load and CD4s.

Namaste,
David
Title: Re: LTNP monotherapy ?
Post by: John2038 on May 28, 2008, 02:48:50 pm
Sara,

I guess you find the question interesting because you maybe think:

LTNP remains long term non progressors until they progress.. (or are we EC, LTNP, DP, ? etc..)
So in most case, it's a matter of time that being on drugs will become the safest route.
(And also you might want to take drugs to support your body sooner or later in his fight)


Now if the risk calculator give an estimation on how safe the drug route might be, it did not tell you when to start HAART (providing as such just a partial answer)

NOTE:
In others words:

Q: What is the difference between a EC, LTNP, DP, P, FP ?

   EC, LTNP, DP, P, FP
|-----------------------> t
             ^^^^^^^^^
          somewhere, meds is beneficial

          
A: The difference is, at least, the delay between the infection and the HAART initiation
But wherever we are on this timeline, the great majority of us if not all are shifting to the right.
So a day or another, the risk calculator become more accurate (assuming it is mixing all progressors profiles,that is, mainly a population of 98% of DP, P or FP )

The unknown variables are:
where are you on the timeline and how much immune recovery is enough (*) ?

John

(*) As the drugs are restoring partially our immune systems (less with time).
In the balance as well the SMART study shows that initiating HAART earlier result in less side effects and better response.

EDIT >> formulation
Title: Re: LTNP monotherapy ?
Post by: John2038 on May 28, 2008, 03:03:36 pm
redhotmuslbear,

do you think, based on your experience (symptoms, reading, etc.) that it could be of any benefice for a LTNP to start a monotherapy:
In others words, can a monotherapy extends the life expectancy, reduce the OI risks and maybe postpone for decade the HAART (more toxic) that would have maybe to be taken (much) earlier without a monotherapy ?
Maybe a monotherapy is even enough (the body is the other drug)

What about resistances ? Taking a monotherapy might maybe allow the body to focus (specialize) on resistant strain ?

John
Title: Re: LTNP monotherapy ?
Post by: RapidRod on May 28, 2008, 06:16:37 pm
No there is no benefit. Why would one be taking drugs when they don't need them? Hell a Dr. doesn't start people on Meds until they are below 350 so why on earth would you be given drugs. My CD4 stayed above 1400 for 21 years and I never got over a 4500 VL. Do you think a doctor would have started me on Meds when I had a normal CD4? No. There would be no benefit in starting meds, you would probably cause more problems to your organs. Would you take Antiarrhythmic medication when your heart isn't throwing arrhythmias? Of course not.
Title: Re: LTNP monotherapy ?
Post by: Ann on May 28, 2008, 06:18:32 pm
I would think that going on monotherapy when one is not certain one is actually a true LTNP is a very bad idea and an open invitation to developing resistance to whatever drug is being used. ???
Title: Re: LTNP monotherapy ?
Post by: Dachshund on May 28, 2008, 06:30:09 pm
Why not just go ahead and put every sexually active person in the world on PEP now and be done with it?
Title: Re: LTNP monotherapy ?
Post by: fearless on May 28, 2008, 07:20:43 pm
mono-PEP or combination-PEP, Hal?
Title: Re: LTNP monotherapy ?
Post by: Dachshund on May 28, 2008, 07:27:04 pm
mono-PEP or combination-PEP, Hal?

combo, with a diet soda.
Title: Re: LTNP monotherapy ?
Post by: John2038 on May 29, 2008, 12:15:05 am
Prophylaxis ? No

Yep, the question "might a monotherapy beneficial for a LTNP ?" is no well asked !

It was assume "might a monotherapy beneficial for a LTNP when it's time (or a bit earlier as we don't know when) it's time to start (but with a LTNP history)"

   EC, LTNP, DP, P, FP
|-----------------------> t
             ^^^^^^^^^
          somewhere, meds is beneficial

 
- Maybe the immune system of a LTNP associated with a monotherapy might be equivalent to taking HAART.
- Even if in the timeline, the treatment is start a bit earlier (as no clues exists on how long soemone will remain a EC/LTNP/DP), the SMART study have shows that a bit earlier (even before 350 CD4) might be better.

Thanks for your having provided your answers.

John
Title: Re: LTNP monotherapy ?
Post by: David_CA on May 29, 2008, 09:46:37 am
This thread just seems silly to me.  I always thought one of the 'luxuries' of being an LTNP was not having to be on meds.  Of course, this can all change, as even some LTNP's end up on meds.  I do know that often HIV+ folks have to change meds due to resistance.  Why the hell somebody would want to build up resistance by using a failure prone regimen (monotherapy) and suffer side effects unnecessarily is beyond me.

David
Title: Re: LTNP monotherapy ?
Post by: John2038 on May 29, 2008, 11:56:30 am
What is beyond me is a "stay poz and silent".

Have you ear at least about the Kaletra monotherapy study for non LTNP ?
Have you ever think why pharma, doctor and researcher can even think in 2008 to a monotherapy for treatment naive patient without having think prior that to arguments like your ?

Haven't you understand that an ID Doc just use labs to diagnose you, and surveys to choose your drugs ?
And that pharma use studies to evaluate drugs ?
So what ? If a study is not done, all the chain collapse. If your ID doc is missing a lab or a survey, he just won't treat you in the best possible way.

In others words, if you do not raise questions, you just become dependent on the wills of others.
And if you are not lucky choosing your doc, you won't go far.

As I am working in a developing country, and as at least the docs here do not have cutting edges skills, I have to raise what seems to me the rights questions.
 
From there, read the studies, side effects and so.

Doing so, here is an extract of the Kaletra monotherapy study:

It has been suggested that using a Norvir (ritonavir)-boosted protease inhibitor (PI) without the use of other antiretrovirals to treat HIV is less effective, and more likely to cause drug resistance, than standard three-drug regimens in clinical trials.
However, in an editorial published in the March 30 issue of AIDS, researchers argue that PI monotherapy has the potential to guard against side effects and preserve future treatment options, thereby keeping it in the limelight as a potential treatment option that deserves further research.


Full text: http://www.aidsmeds.com/articles/hiv_monotherapy_kaletra_1667_14295.shtml

Now again, this study have been made on treatment naive and non LTNP patient. How about that ?
Feeling upset ?
So if such question have make sens to scientist, then the same question but for LTNP make sens as well.

Especially knowing that:
- Your body is creating resistances with or without drugs. Even when you are undetectable.
- Most if not all LTNP will became a day or another FP.
- The conclusions of the study above were:
  i-  90 percent of people on monotherapy whose virus dropped to less than 400 copies by the fourth week of treatment in the Monark study went on to maintain undetectable viral loads for 48 weeks of treatment
  ii- A strategy of PI monotherapy for most patients, with intensification for the few who need it, may be attractive for many patients and clinicians
  iii-  Several new monotherapy trials are moving forward—some using Kaletra, and others using Reyataz (atazanavir) or Prezista (darunavir) boosted by Norvir. In most cases, people are being treated initially with three-drug regimens to reduce their viral loads to undetectable before switching to monotherapy. Hopefully, monotherapy will be associated with better long-term efficacy in these studies than in trials completed thus far.


Now the LTNP have an advantage among others:
They body can control the virus, but their body is doing overtime to reach that.
A day or another, the body surrender. What if you support your body before he surrender ?
May the immune system + montotherapy become equivalent to HAART for FP ?

No clues on when the body will give up, but LTNP might want to consider at least taking a monotherapy when some signs become visible. Up to their will.
But to do so, they may need to do same the doc, get a study available. That is the question raised in this thread.

John
Title: Re: LTNP monotherapy ?
Post by: Miss Philicia on May 29, 2008, 11:58:16 am
Yes John.  We're all just lemmings for not buying into your theories.
Title: Re: LTNP monotherapy ?
Post by: redhotmuslbear on May 29, 2008, 12:17:42 pm
In others words, if you do not raise questions, you just become dependent on the wills of others.
And if you are not lucky choosing your doc, you won't go far.

As I am working in a developing country, and as at least the docs here do not have cutting edges skills, I have to raise what seems to me the rights questions.


John,
If you are in a developing country, the population does not have a marked percentage of LTNPs present, so this line of questioning seems far from "the right questions."  And, again, even if you had LTNPs present in the small numbers found among descedants of Northern Europeans, the cost of detecting LTNPs early would be impractical.

As for suggesting a boosted PI monotherapy, LTNPs with any sense of self-determination will tell you to shove it.  Any added years on our run without AIDS would certainly be offset by increased cardiac risk factors from the PI.

Title: Re: LTNP monotherapy ?
Post by: John2038 on May 29, 2008, 12:22:47 pm
redhotmuslbear,

when the LTNP give up, he get HAART nowadays.

How bad for the heart is that compared to a monotherapy ?

John
Title: Re: LTNP monotherapy ?
Post by: thunter34 on May 29, 2008, 12:28:27 pm
the cost of detecting LTNPs early would be impractical.

I still don't understand how "detecting LTNP's early" is even possible - just by definition.  

And if you do start therapy - even some sort of monotherapy - then you by definition cease to be a LTNP, right?  Since you are now maintaining by way of some sort of chemical therapy.  


And John, what is up with all this post - log off, post - log off  business?  It's quite obvious to everyone that you are still just hanging around lurking in wait for responses.  That's the kind of crap net trolls do, ya know.

*sigh*  This thread is becoming a long term non-progressor.   ::)
Title: Re: LTNP monotherapy ?
Post by: Dachshund on May 29, 2008, 12:30:21 pm
As I am working in a developing country, and as at least the docs here do not have cutting edges skills, I have to raise what seems to me the rights questions.


This is an interesting twist. Do you mean you receive your care in a developing country? I thought your testing and treatment was done in Belgium. Are you working with doctors and HIV positive people in a developing country ? Do the doctors lack skills or resources? Have you run your theory by you own doctors? Have you posed the question to the experts at the Body.com. At times you read like you're not even positive.
Title: Re: LTNP monotherapy ?
Post by: John2038 on May 29, 2008, 12:33:12 pm
thunter34,

buy a Palm Pilot like cell phone, and you will log on log off maybe more than me.

John
Title: Re: LTNP monotherapy ?
Post by: thunter34 on May 29, 2008, 12:36:27 pm
thunter34,

buy a Palm Pilot like cell phone, and you will log on log off maybe more than me.

John

Hey!  You're pretty high tech in that developing country! 

Quote
This is an interesting twist. Do you mean you receive your care in a developing country? I thought your testing and treatment was done in Belgium. Are you working with doctors and HIV positive people in a developing country ? Do the doctors lack skills or resources? Have you run your theory by you own doctors? Have you posed the question to the experts at the Body.com. At times you read like you're not even positive.

It does get confusing.  It's a bit like an AIDS version of Where's Waldo?

Title: Re: LTNP monotherapy ?
Post by: redhotmuslbear on May 29, 2008, 12:41:58 pm
redhotmuslbear,
when the LTNP give up, he get HAART nowadays.
How bad for the heart is that compared to a monotherapy ?

John,
I'll let someone else take exception to the words "give up."

Still, you're making a lot of assumptions here.  I would suggest that if an LTNP showed persistent failure to control HIV, treatment decisions taken with a doctor would be start with a minimal medication burden, not triple-drug therapy, as you suggest.  Even if triple-drug therapy was started, there are combinations like NVP+FTC+TFV that do not jack up triglycerides or impose other cardiac risk.

RHMB
Title: Re: LTNP monotherapy ?
Post by: John2038 on May 29, 2008, 12:43:11 pm
Do you mean you receive your care in a developing country?

Yes

I thought your testing and treatment was done in Belgium.

No

Do the doctors lack skills or resources?

Definitely, excepting one, but not easily available.

Have you posed the question to the experts at the Body.com.

Reformulated the questions, but the inital one sent have been answered. Not this one.
In more, tried to ask this and previous question to Dr. Gallant, but their server do not take questions these days.

At times you read like you're not even positive.

If only, if only if only...

Hey!  You're pretty high tech in that developing country! 

Traveling as well, despite the fact that cutting edge technologies and even car are also available in developing country.
Title: Re: LTNP monotherapy ?
Post by: thunter34 on May 29, 2008, 12:49:13 pm
Traveling as well, despite the fact that cutting edge technologies and even car are also available in developing country.

So cutting edge technology is available, but adequate medical training is not?  Interesting.
Title: Re: LTNP monotherapy ?
Post by: John2038 on May 29, 2008, 12:52:56 pm
Still, you're making a lot of assumptions here.

Maybe you will agree that the assumptions made here are not too far from those made for the Kaletra monotherapy study.

I would suggest that if an LTNP showed persistent failure to control HIV, treatment decisions taken with a doctor would be start with a minimal medication burden, not triple-drug therapy, as you suggest.

Ok, but why then not a monotherapy ?
What is interesting is that you are suggesting also a minimal medication burden.

Even if triple-drug therapy was started, there are combinations like NVP+FTC+TFV that do not jack up triglycerides or impose other cardiac risk.

That's the last possibility for sure.

Don't you think watching closely their counts, LTNP can "predict" (in term of probability) a "body failure" for sooner or later ?
What will be the cost of being on monotherapy let say even 2 years earlier ?
Maybe 2 y earlier + mono will work 10 y,  while 2y after + HAART will work just 3 years, because in the meantime, the body is no more able to give his full.

I don't know, but thank's for answering. I appreciate your point of views.

John
Title: Re: LTNP monotherapy ?
Post by: John2038 on May 29, 2008, 12:53:31 pm
So cutting edge technology is available, but adequate medical training is not?  Interesting.

I would suggest you to travel to have an opinion on that.
Title: Re: LTNP monotherapy ?
Post by: Dachshund on May 29, 2008, 12:57:09 pm
Seems like you're trying to have it both ways. When it's convenient you post you're at the mercy of doctors without cutting edge skills, and the next post you're relating advanced testing and labs with an amazing turn around time. The rest of the developed world should have it so bad.
http://forums.poz.com/index.php?topic=20963.msg268848#msg268848

Did you read The Little Boy Who Cried Wolf yet?
Title: Re: LTNP monotherapy ?
Post by: thunter34 on May 29, 2008, 12:58:29 pm
I would suggest you to travel to have an opinion on that.

Don't need to, darling.  I'm basing that on your own statements:

Quote
As I am working in a developing country, and as at least the docs here do not have cutting edges skills, I have to raise what seems to me the rights questions.


kthxbye!

Title: Re: LTNP monotherapy ?
Post by: Miss Philicia on May 29, 2008, 01:02:09 pm
And to think that in another thread John read me for daring to question the qualifications of a doctor in Grenada.  Oh the irony (and the agony).
Title: Re: LTNP monotherapy ?
Post by: John2038 on May 29, 2008, 01:07:43 pm
Travel, and you will see that most of the time, the best docs just expatriate.
There are few exceptions and I meet one, almost cutting edge.

Sonar, and standard labs at least (and even scans) are all available in most if not all developing countries.
Title: Re: LTNP monotherapy ?
Post by: Miss Philicia on May 29, 2008, 01:11:28 pm
If I attempted to post something like this (http://forums.poz.com/index.php?topic=21088.msg271080#msg271080) from my Palm Treo it would take me 5 hours.
Title: Re: LTNP monotherapy ?
Post by: John2038 on May 29, 2008, 01:15:27 pm
Easy if your laptop is connected to your Palm (HSDPA).
Logout to avoid unnecessary connection.

Pathetic
Title: Re: LTNP monotherapy ?
Post by: Dachshund on May 29, 2008, 01:19:33 pm
Travel, and you will see that most of the time, the best docs just expatriate.
There are few exceptions and I meet one, almost cutting edge.

Sonar, and standard labs at least (and even scans) are all available in most if not all developing countries.

I have travelled extensively. I've gone native in Sumatra and lived on less than a couple of bucks a day all over Asia. Oh I've done the third world and not isolated in tourist hot spots. One thing I do know from the Phillipines to Peru those with access to good healthcare like you describe are the privileged and the children of the privileged.

The tests you mention may be available but they ain't available to everyone. I know, I've been there.
Title: Re: LTNP monotherapy ?
Post by: John2038 on May 29, 2008, 01:23:24 pm
The tests you mention may be available but they ain't available to everyone. I know, I've been there.

So ?
Title: Re: LTNP monotherapy ?
Post by: Basquo on May 29, 2008, 01:24:54 pm
Good God, man, how much of each day are you spending obsessing over monotherapy for LTNPs?

How about this:  I'm ALMOST considered a LTNP. I take valcyclovir, an antiviral, everyday.  My counts are all good.  So SOME type of monotherapy MIGHT be beneficial.

Please relax. You'll waste the many years you have ahead of you if don't just live with this instead of keeping it under your microscope 24/7.  You'll probably disagree with that but what else do I have to go on? When was the last time you started a thread in off-topic?

And please don't ask me a bunch of IF and HOW and WHY questions about my progression, my medication, etc.

I'm going over to the "Gatherings" forum now. It's something to look forward to, not to agonize over.
Title: Re: LTNP monotherapy ?
Post by: thunter34 on May 29, 2008, 01:25:06 pm
Lost post

Blasted Palm Pilot.
Title: Re: LTNP monotherapy ?
Post by: Dachshund on May 29, 2008, 01:28:06 pm
So ?

So I know when someone is full of it.
Title: Re: LTNP monotherapy ?
Post by: Miss Philicia on May 29, 2008, 01:29:11 pm
Good God, man, how much of each day are you spending obsessing over monotherapy for LTNPs?

He doesn't even know if he's actually a LTNP in the first place.  And this word "obsessive" keep coming up, doesn't it?
Title: Re: LTNP monotherapy ?
Post by: redhotmuslbear on May 29, 2008, 01:30:15 pm
And please don't ask me a bunch of IF and HOW and WHY questions about my progression, my medication, etc.

I'm going over to the "Gatherings" forum now. It's something to look forward to, not to agonize over.


Oh, no, she di'int go AAAALLLLLLLLL up in there!   ::)
Title: Re: LTNP monotherapy ?
Post by: John2038 on May 29, 2008, 01:33:15 pm
Without hijacking, such thread would become much shorter and involve only the interested people without bothering the others.
beeeeee
Title: Re: LTNP monotherapy ?
Post by: John2038 on May 29, 2008, 01:34:34 pm
"obsessive" keep coming up, doesn't it?

Narcissism as/and self-descriptive
Title: Re: LTNP monotherapy ?
Post by: thunter34 on May 29, 2008, 02:00:59 pm
Narcissism as/and self-descriptive

interesting.  this post was grammatically correct english until you came back and revised it. 

it said "narcissistic and self-descriptive". 
Title: Re: LTNP monotherapy ?
Post by: David_CA on May 29, 2008, 02:03:40 pm
Without hijacking, such thread would become much shorter and involve only the interested people without bothering the others.
beeeeee

John, what do you want?  Do you want to throw your thoughts and ideas out and get our opinions on them or do you want validation / agreement?  If it's the former, you're getting them.  It does no good to argue with other's opinions.  If it's the latter, you won't get it. 

I've generally found that the forum works like this (for HIV related questions, anyway)
1. I ask a question
2. People respond
3. I may ask them to elaborate on what they've said
4. Others will agree or disagree with what others have said
5. I read all the responses and try to learn from them
6. I appreciate when people take time to answer my questions
7. As a rule, I don't argue with those who have lots more HIV / AIDS experience than me
8. I don't burn bridges.  The same people you argue with will be the ones who can help you with serious, relevant questions when you have them. 


David
Title: Re: LTNP monotherapy ?
Post by: John2038 on May 29, 2008, 02:17:49 pm
interesting.  this post was grammatically correct english until you came back and revised it. 

it said "narcissistic and self-descriptive". 

Just update the poz.com dictionary as narcissistic is not in it. In doubt, I corrected it.

John, what do you want?  Do you want to throw your thoughts and ideas out and get our opinions on them or do you want validation / agreement?  If it's the former, you're getting them.  It does no good to argue with other's opinions.  If it's the latter, you won't get it. 

You get answers among hijack. I would love to post in the ideal forum you are describing.
Re-read this thread, you will see that I have ask a question, and answered adequately to those who have answered.
I do not hijack any thread, and I do usually react late to hijack posts, or sometime not at all.
Title: Re: LTNP monotherapy ?
Post by: David_CA on May 29, 2008, 03:12:51 pm
Just update the poz.com dictionary as narcissistic is not in it. In doubt, I corrected it.

You get answers among hijack. I would love to post in the ideal forum you are describing.
Re-read this thread, you will see that I have ask a question, and answered adequately to those who have answered.
I do not hijack any thread, and I do usually react late to hijack posts, or sometime not at all.

I can't re-read it;  honestly, it gave me a headache the first time.  It must just be me, 'cause my HIV questions generally get answered without much in the way of hijack.

David
Title: Re: LTNP monotherapy ?
Post by: John2038 on May 29, 2008, 03:40:39 pm
I can't re-read it;  honestly, it gave me a headache the first time. 

Beyond your understanding but compliant with your golden rules ?
1. I ask a question
2. People respond
3. I may ask them to elaborate on what they've said
4. Others will agree or disagree with what others have said
5. I read all the responses and try to learn from them
6. I appreciate when people take time to answer my questions
7. As a rule, I don't argue with those who have lots more HIV / AIDS experience than me
8. I don't burn bridges.  The same people you argue with will be the ones who can help you with serious, relevant questions when you have them. 

It must just be me, 'cause my HIV questions generally get answered without much in the way of hijack.

maybe cause of your motobike ?  (trying to answer to your interrogation)
Title: Re: LTNP monotherapy ?
Post by: bocker3 on May 29, 2008, 06:49:40 pm
John,

You have gotten a number of replies to your question -- redhotmuslebear has answered it about sixteen different ways.  Each time, you have come back and tried to convince him why he's wrong, or closed minded, etc for not agreeing that monotherapy is THE answer.  So, please get off your high horse about hijacks and no answers here.

What I don't understand is WHY ON EARTH ARE YOU OBSESSING ABOUT THIS TOPIC!!!  You are not a LTNP, you've been positive for less than 2 years -- there is nothing long-term about that.  Let me say again -- 2 years is NOT long-term.

Bottom line is that in just about every single thread that I've read from you, you ask a question for which you, seeming do not want HONEST answers -- you simply want answers to match up with your thinking.  This is working the last nerve of a whole host of people -- and you probably don't want to be burning bridges to folks with lots of LONG-TERM experience living with the virus (I do not consider myself one of those -- I was only diagnosed in 2005 and last tested negative in 2001).

Really, I say this with absolute sincerity -- stop obsessing over every thought you think and every study you read.  You will absolutely drive yourself insane.  (Let me pre-empt your next thought -- I'm not advocating "giving up" or turning over all decision to your doctors -- I'm a proponent of owning your own health care, in partnership with your docs -- but you are way overboard here.)

Worry about learning to live with HIV -- hopefully you will get to call yourself a LTNP some day.  Honestly, I don't know how you live with yourself!

Mike
Title: Re: LTNP monotherapy ?
Post by: David_CA on May 29, 2008, 10:42:06 pm
Beyond your understanding but compliant with your golden rules ?
maybe cause of your motobike ?  (trying to answer to your interrogation)

Well, I'll take that as a compliment!  :D