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Author Topic: Whats your opinion? Should I start Meds?  (Read 19412 times)

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Offline Boze

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  • Posts: 477
Re: Whats your opinion? Should I start Meds?
« Reply #50 on: July 15, 2010, 02:26:29 PM »
1) We don't know what's causing cognitive decline for HIV+ who are on ARV. This study: http://www.aidsmeds.com/articles/hiv_brain_cns_1667_16868.shtml

showed that decline does not correlate with how effective the ARV treatment is at crossing the brain barrier. This is just a very grey area. Could be result of overall inflammation.

2) You need to actually read the study rather than the headline. Were you to do so, you would see that out of 103 discordant couples on ARV in the study, only one transmitted. And we don't know whether that individual was UD since he recently started treatment.
I'll put it to you this way - there is no recorded instance of a UD individual transmitting. Millions of people are on ARV - so were this to happen, we'd hear about it.

3) Use your imagination - sometimes people use needles / lancets that have blood and other people may accidentally touch them after. Hint - home diabetes test.

4) Can you find me one example of a drug that was used for 10 years and then all of a sudden found to be very toxic? I don't mean 10-20 people having a heart attack out of millions (ie Viox) using it. I mean real % toxic that only shows up after 15 years of use.
I'm not saying you are wrong - I don't know this. It just seems that if people are using Atripla for 10 years with no problem - how likely are we to find that using it for 20 years will be very bad?

5) To add to Mis P. Please see details of foto study. There people were using Atripla (i think) for 5 days, off for 2 days for 6 months. Nobody developed resistance. Ie you think to have a skewed understanding of how much dosage one must miss in order to develop resistance.

6) I looked into this in this thread: http://forums.poz.com/index.php?topic=33218.0

(I am very thorough :) Ann has pointed out that it's ok to buy online. I didn't get around to testing the pill vs Atripla - would do so if I lose my current supply. But if you want to check - get in touch with the lab I found and see how costly the test would be.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #51 on: July 15, 2010, 02:34:55 PM »

I'll put it to you this way - there is no recorded instance of a UD individual transmitting. Millions of people are on ARV - so were this to happen, we'd hear about it.

And I'll put it this way, you're wrong.

Case report of sexual transmission when viral load suppressed to <50 copies/mL

That was from October '08 and there are bound to have been other cases since.

You're thinking of the Swiss statement - but that involved heterosexual couples and it was looking at the risks of conceiving naturally and so was more about vaginal intercourse rather than anal.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #52 on: July 15, 2010, 02:42:06 PM »
And I'll put it this way, you're wrong.

Case report of sexual transmission when viral load suppressed to <50 copies/mL

That was from October '08 and there are bound to have been other cases since.

You're thinking of the Swiss statement - but that involved heterosexual couples and it was looking at the risks of conceiving naturally and so was more about vaginal intercourse rather than anal.

Yes, thank you for correcting me. I forgot to add natural  ;) vaginal sex qualifier in my statement.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Whats your opinion? Should I start Meds?
« Reply #53 on: July 15, 2010, 02:44:20 PM »
Yes, thank you for correcting me. I forgot to add natural  ;) vaginal sex qualifier in my statement.

There's nothing unnatural about anal sex. You're on thin ice with that little joke, mister.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline eric48

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Re: Whats your opinion? Should I start Meds?
« Reply #54 on: July 15, 2010, 04:02:46 PM »
This message is for Ann:

Ann,

you have an opinion that is quite discordant to the general opinion and mediacal trend of the moment.

(Maybe I should have read more of your posts before starting the meds, I do not know. I guess the SMART study will give me some answers. I was so dam worried at the time.)

And you make your point ! post after post !

So patiently ...


I admire you for that !

Eric
NVP/ABC/3TC/... UD (uninfectious) ; CD4 > 1000; CD4/CD8 ~ 2.0   stock & donations : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4d. ON, 3d. OFF)

Offline Hellraiser

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Re: Whats your opinion? Should I start Meds?
« Reply #55 on: July 15, 2010, 07:37:39 PM »
Fine, I'm a long term survivor of 22 years.  You clearly don't comprehend the difference between pre-HAART treatment and post-HAART treatment.  Research this, comprehend the difference, and if you have further questions feel free to ask.

For once Philly and I are in complete agreement.  Everything I've read seems to state that as long as you are adherent you can remain on the same regimen from the beginning to end.

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #56 on: July 15, 2010, 10:30:44 PM »
For once Philly and I are in complete agreement.  Everything I've read seems to state that as long as you are adherent you can remain on the same regimen from the beginning to end.

big "if" though.  Who has actually been on the same regime for a decade?
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Hellraiser

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Re: Whats your opinion? Should I start Meds?
« Reply #57 on: July 15, 2010, 10:38:49 PM »
big "if" though.  Who has actually been on the same regime for a decade?

HAART has only been around for 14 years, but I know there are a couple people who have been on some of the older meds for a very long time.

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #58 on: July 15, 2010, 11:00:07 PM »
HAART has only been around for 14 years, but I know there are a couple people who have been on some of the older meds for a very long time.

I've heard volumes about toxicity which all but completely prohibits a long term regime.  Specifially, liver issues.  Not just on this forum, but everywhere.  Is this uncommon?
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Miss Philicia

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Re: Whats your opinion? Should I start Meds?
« Reply #59 on: July 15, 2010, 11:33:21 PM »
I've heard volumes about toxicity which all but completely prohibits a long term regime.  Specifially, liver issues.  Not just on this forum, but everywhere.  Is this uncommon?

Now you've moved the goal post to a side effect as opposed to resistance.  A post-HAART patient is more likely to change a regimen due to a side effect (like a liver issue) than they are to develop resistance.  These are separate issues.

As far as if liver issues are "uncommon" certainly it's far from unheard of, but no not every LTS'er has liver issues.  I've been on meds for 17 years and I don't have any liver issues.  And any other side effect issues I do have are from meds I took in the 90's that either were taken off the market or are no longer on the list or recommended medications.

Look I know all of this is new to you and stuff, but you're reading all of these things on the internet and not really understanding it all.  In fact, I'm still not convinced that you understand why LTS pre-HAART patients developed resistance issues as you ignored my previous post, which you yourself requested.
"I’ve slept with enough men to know that I’m not gay"

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #60 on: July 16, 2010, 12:25:28 AM »
Now you've moved the goal post to a side effect as opposed to resistance.  A post-HAART patient is more likely to change a regimen due to a side effect (like a liver issue) than they are to develop resistance.  These are separate issues.

As far as if liver issues are "uncommon" certainly it's far from unheard of, but no not every LTS'er has liver issues.  I've been on meds for 17 years and I don't have any liver issues.  And any other side effect issues I do have are from meds I took in the 90's that either were taken off the market or are no longer on the list or recommended medications.

Look I know all of this is new to you and stuff, but you're reading all of these things on the internet and not really understanding it all.  In fact, I'm still not convinced that you understand why LTS pre-HAART patients developed resistance issues as you ignored my previous post, which you yourself requested.

You didn't exactly guide me in any direction, so I didn't bother responding.  I believe all you told me was to "read up" on the issue, and that I clearly don't understand it.  What kind of response do you want to that?  It was more of an insult than a helpful suggestion.  I'm guessing pre-haart patients developed resistance issues because they were treated with monotherapy which failed to adequately stem the replication of the virus, encouraging mutation against the therapeutic agents utilized.  Am I incorrect in guessing that while this may have ENCOURAGED mutation at a higher rate than today, an accidentally missed dose...or an imposed treatment holiday...could have the same effect?  Is there something inherent in the current regimes that disourages mutations against the compoents of the regimes?  I realize that there was some study where people skipped their meds on weekends, but I don't believe anyone has endorsed it as a great way to lower medical costs.  The rising rate of resistant new infections seems to indicate that HAART isn't a panacea against drug resistance.

As for "moving the goal post", my goal is to have a dialogue, not a contest.  There are plenty of people on this forum who will moisten their panties at the opportunity berate one another like third tier law students.  I'm sure I'll get there, but right now I really am trying to achieve an understanding.  I wasn't "moving the goal post", i was addressing another component of what I perceive to be an impediment in the long term sustainability of treatment, with long term treatment regimes presumably being necessary to prevent resistance.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Boze

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  • Posts: 477
Re: Whats your opinion? Should I start Meds?
« Reply #61 on: July 16, 2010, 06:54:53 PM »

As for "moving the goal post", my goal is to have a dialogue, not a contest.  There are plenty of people on this forum who will moisten their panties at the opportunity berate one another like third tier law students.  I'm sure I'll get there, but right now I really am trying to achieve an understanding.  I wasn't "moving the goal post", i was addressing another component of what I perceive to be an impediment in the long term sustainability of treatment, with long term treatment regimes presumably being necessary to prevent resistance.

I think the issue is that you start off the conversation from a position of someone who is fairly knowledgeable AND negative on HAART. I think both of these aren't really true - ie you're fairly new to this and HAART is not that bad. But you don't so much ask questions as  make disparaging statements about the very thing that is (or will) keep all of us here alive.

So it's not all that surprising that the response you get is negative (in a sense that people disagree with you) and somewhat dismissive - which can be expected when one encounters a novice who takes such position. I understand that dealing with the news may be a bummer, but it's not all bad. I reckon that if you just pepper your commentary with "i think" and "i've read" and "what do you think", it would be more conducive to a dialogue.

That said - i'm not the most diplomatic person out there, so you might want to take my advice with a grain of salt.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Hellraiser

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  • Posts: 4,143
  • Semi-misanthropic
Re: Whats your opinion? Should I start Meds?
« Reply #62 on: July 17, 2010, 03:07:58 AM »
Am I incorrect in guessing that while this may have ENCOURAGED mutation at a higher rate than today, an accidentally missed dose...or an imposed treatment holiday...could have the same effect?

So I know this is difficult to comprehend but the way to avoid those mutations is to NOT MISS DOSES OR GO ON TREATMENT HOLIDAYS.

If you remain 95% adherent to your meds you shouldn't have any resistances develop.  By the way no one is encouraging you to take atripla and go 5on/2off it was just utilized as an example of how far off you could be on a dose (once undetectable) and still not develop mutation.

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #63 on: July 17, 2010, 03:27:57 AM »
So I know this is difficult to comprehend but the way to avoid those mutations is to NOT MISS DOSES OR GO ON TREATMENT HOLIDAYS.

If you remain 95% adherent to your meds you shouldn't have any resistances develop.  By the way no one is encouraging you to take atripla and go 5on/2off it was just utilized as an example of how far off you could be on a dose (once undetectable) and still not develop mutation.

"Hard to comprehend"?  Are you this daft and rude in real life?  Obviously the way to avoid mutations is to avoid missing doses or going on treatment holidays. And the way to avoid HIV is to avoid exposure to the virus.  Obviously, none of us live in a world where hazards are completely avoided.  Thank you for explaining that the virus doesn't become immune at occasional lapses in treatment, but what about treatment interruptions that are imposed by circumstance?  Like interruptions in insurance coverage, or spotty coverage like this http://forums.poz.com/index.php?topic=33573.0 ?
No one can forsee the future, and for persons like myself who probably have the option of forgoing treatment for a while, it may make sense to stall medication for fear that they may lose their jobs in the near future. 
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #64 on: July 17, 2010, 03:45:28 AM »
I think the issue is that you start off the conversation from a position of someone who is fairly knowledgeable AND negative on HAART. I think both of these aren't really true - ie you're fairly new to this and HAART is not that bad. But you don't so much ask questions as  make disparaging statements about the very thing that is (or will) keep all of us here alive.

So it's not all that surprising that the response you get is negative (in a sense that people disagree with you) and somewhat dismissive - which can be expected when one encounters a novice who takes such position. I understand that dealing with the news may be a bummer, but it's not all bad. I reckon that if you just pepper your commentary with "i think" and "i've read" and "what do you think", it would be more conducive to a dialogue.

That said - i'm not the most diplomatic person out there, so you might want to take my advice with a grain of salt.

Understand, I'm not "negative on HAART", I'm concerned about its side effects, especially for those who may not need the drugs immediately.  One blogger on poz.com actually states that a component of ATRIPLA has left him with the "bones of an 85 year old woman".  I'm 28.  I'd like to avoid a broken hip for as long as possible.   I also think that you, as a non-american, need to understand that not everyone in the developed world has the easy access to drugs that you enjoy.  For many of us, interruptions in treatment are beyond our control.  Insurance coverage is at the caprice of our employers and the companies that issue policies.  For us, factors other than "do the drugs help more than hurt" enter the matrix.  If possible, the sustainability of a course of treatment should probably be addressed among other factors.  As for sugarcoating my thoughts and opinions with "I think" and "I feel"...are you kidding me? Seriously?   
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Hellraiser

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Re: Whats your opinion? Should I start Meds?
« Reply #65 on: July 17, 2010, 03:48:44 AM »
You're just finding excuses.  If I told you all you had to do to keep your hiv in check was drink coffee you'd complain about the caffeine.  Grow up.

Offline wtfimpoz

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  • Let's make biscuits!
Re: Whats your opinion? Should I start Meds?
« Reply #66 on: July 17, 2010, 04:20:56 AM »
You're just finding excuses.  If I told you all you had to do to keep your hiv in check was drink coffee you'd complain about the caffeine.  Grow up.

 :o

You're right, because coffee retails for thounsands of dollars a month, requires a lifetime commitment, and causes osteopeirosis. I totally just need to grow up and stop weighing the various cost of drugs against their benefits.

 ::)
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline mecch

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  • red pill? or blue pill?
Re: Whats your opinion? Should I start Meds?
« Reply #67 on: July 17, 2010, 06:13:13 AM »
Train wreck.
Going back to reading dlisted, for slightly less brain rot and much more fun.  8)
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Whats your opinion? Should I start Meds?
« Reply #68 on: July 17, 2010, 11:50:35 AM »
You're just finding excuses.  If I told you all you had to do to keep your hiv in check was drink coffee you'd complain about the caffeine.  Grow up.

Do you have to be so rude? Maybe it's YOU who needs to grow up.

WTF, you have legitimate concerns about the cost and financial sustainability of treatment. I know if I still lived in the States, I'd be very concerned about this aspect too. Especially now with the ADAP crisis.

You need to make sure you know your insurance policy inside and out. You also need to learn the workings of programs like Ryan White, COBRA and ADAP, for future reference. Perhaps if you get involved in advocating for funding for these programs, you'd feel like you were doing some good and being pro-active and that can't be a bad thing.

Even though where I live we have socialised medicine, I still think about the costs. I often question the wisdom of doctors who put their patients on ARVs when they really don't yet need them. The funding for the NHS does not come from a bottomless well.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Boze

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  • Posts: 477
Re: Whats your opinion? Should I start Meds?
« Reply #69 on: July 17, 2010, 12:26:06 PM »
Understand, I'm not "negative on HAART", I'm concerned about its side effects, especially for those who may not need the drugs immediately.  One blogger on poz.com actually states that a component of ATRIPLA has left him with the "bones of an 85 year old woman".  I'm 28.  I'd like to avoid a broken hip for as long as possible.   I also think that you, as a non-american, need to understand that not everyone in the developed world has the easy access to drugs that you enjoy.  For many of us, interruptions in treatment are beyond our control.  Insurance coverage is at the caprice of our employers and the companies that issue policies.  For us, factors other than "do the drugs help more than hurt" enter the matrix.  If possible, the sustainability of a course of treatment should probably be addressed among other factors.  As for sugarcoating my thoughts and opinions with "I think" and "I feel"...are you kidding me? Seriously?   

Your attitude reminds me of a little child who doesn't like the present he got for christmas and is complaining to his parents about it. This sense of entitlement - as if you have a choice. Well, look, it is what it is. You have made poor choices and now you have to deal with consequences (this applies to all of us here, i'm not picking on you in particular).

HAART is the only available form of treatment. Some people - a very small percent - can stay off HAART for a long time. This is genetic - and there are tests for it, for example this one: https://www.23andme.com/health/HIV-Progression/  The percent of people who can stay off HAART is probably a lot smaller among recently infected (or population at large) than those who've been sick from the 80s-90s. Very simple reason - those who got sick in the 80s or 90s and couldn't deal with HIV before HAART have already died. So you have what is called 'survivorship bias'.

Anyways, the rest of the HIV+ population has no choice. However, most people today actually on HAART are doing just fine, with no side-effects. Yes, some people have issues - but you can't rely on anecdotal blogger's experience - because most people with no issues don't actually blog about it. Yes - truvada is associated with bone loss - but you have to actually find the relevant research paper that describes how prevalent it is and what the cofactors were - such as age and history of bone disease.

You seem to be worried about your long-term prospects. In that case, I'd recommend one thing - making sure your CD4s stay above 500. According to this recent paper, patients who keep their CD4 above 500 have the same life expectancy as general population: http://www.aidsmeds.com/articles/hiv_survival_mortality_1667_18083.shtml

As someone who went through what you are going through recently myself, I'd also caution against extrapolating the feedback you read on these forums as typical, for the same reason I alluded to earlier. People tend to write/complain about things that bother them. Those who just take a pill and don't have any issues or problems don't write about it. I asked the forum organizers to create a special section where people would provide feedback on their treatment - just to give novices an idea of how majority HIV+ on HAART are dealing with it. Unfortunately it wasn't deemed appropriate.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #70 on: July 17, 2010, 12:32:40 PM »
Even though where I live we have socialised medicine, I still think about the costs. I often question the wisdom of doctors who put their patients on ARVs when they really don't yet need them. The funding for the NHS does not come from a bottomless well.

Your cost-benefit analysis is missing a very important factor - those on HAART are unlikely to transmit. The cost savings resulting from reduction in new transmission may greatly outweigh the cost of keeping existing patients.
I would not go as far as to claim that there is a net benefit (or trust any mathematical model / paper that does) because it depends on a lot of unknown assumptions - biggest one is how likely an HIV+ person is to have unprotected sex.
But I think the economics may still be in favor of early treatment, see here: http://www.medscape.com/viewarticle/724006
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Hellraiser

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Re: Whats your opinion? Should I start Meds?
« Reply #71 on: July 17, 2010, 02:23:23 PM »
Do you have to be so rude? Maybe it's YOU who needs to grow up. 

Three posts into holding his hand is where I draw the line when he keeps coming up with reasons why HAART is either not effective, not worth it, or potentially too expensive.  He is better off than some of us in that he has insurance that will cover the cost.  I apologize if it seems rude, but it's quite annoying to have someone keep digging for reasons not to find the meds worthwhile.

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #72 on: July 17, 2010, 03:48:21 PM »
Your cost-benefit analysis is missing a very important factor - those on HAART are unlikely to transmit. The cost savings resulting from reduction in new transmission may greatly outweigh the cost of keeping existing patients.
I would not go as far as to claim that there is a net benefit (or trust any mathematical model / paper that does) because it depends on a lot of unknown assumptions - biggest one is how likely an HIV+ person is to have unprotected sex.
But I think the economics may still be in favor of early treatment, see here: http://www.medscape.com/viewarticle/724006

Good point, and the notion that I'm less likely to infect is actually one of the most important factors in my mind.  This is not settled fact though.  As far as I'm aware, I'd been "safe" throughout my sexual experiences.  My probable time of infection didn't include alcohol or drug use, so i dind't just forget what I was doing.  I checked the condoms afterwards, proving that they were worn and didn't break.  Still poz.  Why?  I chose to listen to what I wanted to hear.  I believed the old cannard that they're "failsafe".  I felt safe in this claim and chose to expose myself to numerous contributing risks.  There is plenty of info out there indicating condoms are not foolproof, both from official and popular sources.  I'd even heard anecdotes from friends, and I still thought I was invincible because I wore them.  I believed this because I wanted to, not because it was any more believable than anything else.  Whoops, so wrong.  I cannot, in good conscience, put my partner at any risk.  I don't find the prophalyctic effects of HAART to be foolproof.  So for the time being, I'm greatful he doesn't really like anal sex anyways, and I'm waiting for something more definitive than "HAART may reduce risk of transmission" as a reason to start treatment.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #73 on: July 17, 2010, 04:20:43 PM »
Your attitude reminds me of a little child who doesn't like the present he got for christmas and is complaining to his parents about it. This sense of entitlement - as if you have a choice. Well, look, it is what it is. You have made poor choices and now you have to deal with consequences (this applies to all of us here, i'm not picking on you in particular).

HAART is the only available form of treatment. Some people - a very small percent - can stay off HAART for a long time. This is genetic - and there are tests for it, for example this one: https://www.23andme.com/health/HIV-Progression/  The percent of people who can stay off HAART is probably a lot smaller among recently infected (or population at large) than those who've been sick from the 80s-90s. Very simple reason - those who got sick in the 80s or 90s and couldn't deal with HIV before HAART have already died. So you have what is called 'survivorship bias'.

Anyways, the rest of the HIV+ population has no choice. However, most people today actually on HAART are doing just fine, with no side-effects. Yes, some people have issues - but you can't rely on anecdotal blogger's experience - because most people with no issues don't actually blog about it. Yes - truvada is associated with bone loss - but you have to actually find the relevant research paper that describes how prevalent it is and what the cofactors were - such as age and history of bone disease.

You seem to be worried about your long-term prospects. In that case, I'd recommend one thing - making sure your CD4s stay above 500. According to this recent paper, patients who keep their CD4 above 500 have the same life expectancy as general population: http://www.aidsmeds.com/articles/hiv_survival_mortality_1667_18083.shtml

As someone who went through what you are going through recently myself, I'd also caution against extrapolating the feedback you read on these forums as typical, for the same reason I alluded to earlier. People tend to write/complain about things that bother them. Those who just take a pill and don't have any issues or problems don't write about it. I asked the forum organizers to create a special section where people would provide feedback on their treatment - just to give novices an idea of how majority HIV+ on HAART are dealing with it. Unfortunately it wasn't deemed appropriate.

My attitude reminds you of a child who is unhappy with a gift?  Again, I think that you're speaking VOLUMES about the way we who are positive view ourselves and one another.  I'm not a child.  I'm a grown man, making an unfortunante but very "grownup" cost/benefit analysis about when I should start a lifetime course of treatment.  This decisions is marbled with an almost profound understanding that it is I...through continued employment, savings and luck, who will pay for HAART.  I live in America.  We don't have a nanny state.  Nobody is "giving" me this shit  With more and more nails being put in the coffin of Ryan White, the truth is that if I don't provide for myself, I'm going to die.  I find the comparison to a child...from someone who will never have to choose between meds and food...especially insulting.  A child doesn't pay for his gifts.  HAART is not a "gift".  It is a profoundly expensive and potentially damaging medical treatment.  Our doctors are not "the adults", they are medical advisors, and their consensus has a history of being wrong.  As for it being a "sense of entitlement", no dude, its not a "sense of entitlement", its a wide-eyed view of the fact that there is no perfect answer, so I want to make the best choice for ME.    Truthfully, I find this notion of others being all knowing adults, and life-saving treatments to be "gifts", to be far more immature than my dissatisfaction with the potential side effects of the drugs.

As for the surviroship bias issue, I was very recently infected.  Probably within the last 3-4 months.  Its highly unlikely that I'll be in an immediate need of drugs.  Barring rapid progression, I may have years before HAART becomes necessary.  I work in a shakey industry, so I'm weighing the liklihood of continued treatment against the relative benefits of early treatment.  I'm not suggesting that I defer treatmetn indefinitely in the hopes that something better come along, but a year or two when I can ensure an uninterrupted course of treatment makes sense.

The papers predicting normal lifespan with cd4 beyond 500 are reassuring, and as an aside, I'll likely start treatment shortly after my cd4 drops below 500.  For the record, I don't really give a shit about life-span though.  The projections are so optimistic as to be almost laughable.  My doctor told me he thinks I've got another 45-50 years.  Thats honestly longer than I wanted to live before I tested positive.  I work with octogenarians occasionally.  Tyipcally, there is nothing left to their lives, and quality of life is what I care about.  The physical damage that HIV patients experience isn't the most terrifying for me.  Its cognitive decline.  And according to some studies I've read, the meds don't do much to stop or even slow it.  (And then I've read others that say the opposite.  Whats really scary about HAND is that they seem to have a hard time settling on factors that are predictive of it)

I agree with your final point that I shouldn't take everything I read to heart.  You've got a good point, and for the most part, I strongly respect what I read from you, but I disagree with a lot of it.  I would really like to get out and about and see how others with this disease are actually living.  I really think it'd be reassuring compared to the picture that exists in my mind.  Right now, I don't really know where to look for that though. 
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #74 on: July 17, 2010, 04:26:10 PM »
Three posts into holding his hand is where I draw the line when he keeps coming up with reasons why HAART is either not effective, not worth it, or potentially too expensive.  He is better off than some of us in that he has insurance that will cover the cost.  I apologize if it seems rude, but it's quite annoying to have someone keep digging for reasons not to find the meds worthwhile.

Again, you illustrate so much of whats wrong with HIV treatment and support.  So much handholding, so few answers or solutions.  I'm not looking for handholding, I'm trying to achieve understanding through dialogue.  The rubberstamp "the drugs are great and easily tolerated" line that newly-infected like myself get fed is actually kinda insulting when you're looking for concrete answers.  I recognize that I'm better off than some, but I also recognize that things dont' always roll out as planned.  I could lose my job.  My insurnace coverage could have caps.  I'm not "digging for reasons to not find the meds worthwhile", its that, for me as well as many others, they may not be, at least not immediately.  I find it quite annoying that you're so dismissive of others simply because you perceive them as being in a better boat than yourself some.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #75 on: July 17, 2010, 04:38:05 PM »
Do you have to be so rude? Maybe it's YOU who needs to grow up.

WTF, you have legitimate concerns about the cost and financial sustainability of treatment. I know if I still lived in the States, I'd be very concerned about this aspect too. Especially now with the ADAP crisis.

You need to make sure you know your insurance policy inside and out. You also need to learn the workings of programs like Ryan White, COBRA and ADAP, for future reference. Perhaps if you get involved in advocating for funding for these programs, you'd feel like you were doing some good and being pro-active and that can't be a bad thing.

Even though where I live we have socialised medicine, I still think about the costs. I often question the wisdom of doctors who put their patients on ARVs when they really don't yet need them. The funding for the NHS does not come from a bottomless well.

Thanks al lot Ann.  I agree, it would be very constructive for me to get involved in some kind of advocacy.  As for the costs in socialized medicine, there is a doc's blog on poz.com who openly questions to what extent the push for earlier treatment has led to the current ADAP crisis, and how its tragic that public funds needed for those with "full blown AIDS" are being diverted to those with normal CD4 levels who may not even benefit from treatment.  He has a good point.  Personally, I wonder how long Her Majesty's (newly austere?) Health Service will be able to tolerate this early push. 

There has been SO MUCH emphasis on telling me not to kill myself, not to max out my credit cards, not to despair.  I've gotten spectacular advice, and my ASO caseworker guy has really been fantastic in holding my hand when I needed it, in understanding where I was emotionally and in walking me through how to navigate my interactions with the world.  He helped me find a doctor, and even called me to remind me to show up.  When I asked about financial planning for thie HIV positive (which I would presume to include better insurnace understanding), I was told that no such services existed.  Seriously?  For a disease with long term disability issues but supposedly "near normal" lifespan, this is a shocking lapse in service.   
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #76 on: July 17, 2010, 04:58:13 PM »
As for the costs in socialized medicine, there is a doc's blog on poz.com who openly questions to what extent the push for earlier treatment has led to the current ADAP crisis, and how its tragic that public funds needed for those with "full blown AIDS" are being diverted to those with normal CD4 levels who may not even benefit from treatment.  He has a good point.  Personally, I wonder how long Her Majesty's (newly austere?) Health Service will be able to tolerate this early push. 

Yes, this is exactly what I'm worried about.


When I asked about financial planning for thie HIV positive (which I would presume to include better insurnace understanding), I was told that no such services existed.  Seriously?  For a disease with long term disability issues but supposedly "near normal" lifespan, this is a shocking lapse in service.   

I have no idea what you do for a living, but if you're in anything remotely financial, maybe this is a niche market you could fill with your own business. Something you could do on the side.

Your cost-benefit analysis is missing a very important factor - those on HAART are unlikely to transmit. The cost savings resulting from reduction in new transmission may greatly outweigh the cost of keeping existing patients.
I would not go as far as to claim that there is a net benefit (or trust any mathematical model / paper that does) because it depends on a lot of unknown assumptions - biggest one is how likely an HIV+ person is to have unprotected sex.
But I think the economics may still be in favor of early treatment, see here: http://www.medscape.com/viewarticle/724006

Give me a break. Condoms don't cost tens of thousands of dollars/pounds to purchase every year and I don't care how much sex a person is having. I find the whole "treat to stop onward infections" idea to be rather offensive - as though I cannot be trusted to use condoms.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline phildinftlaudy

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Re: Whats your opinion? Should I start Meds?
« Reply #77 on: July 17, 2010, 05:05:28 PM »
I have no idea what you do for a living, but if you're in anything remotely financial, maybe this is a niche market you could fill with your own business. Something you could do on the side.

I agree with Ann.  I am a grant writer for a nonprofit and do grant consulting work.  I could definitely see this as a service that many funders would support.  Perhaps, bring it up to your ASO (I know that I will be doing the same with the organization I work for).  Many ASOs don't have this service because they are used to working with populations that receive Ryan White or other government assistance for care, thus they didn't see the need to include a service that translates the coverage of private insurance.

I could see the Robert Wood Johnson Foundation or Pew Charitable Trust supporting something like this, as well as local foundation support.  The cost to implement would not be extensive and it would be easy to show the need - more people are living with HIV, working an have some type of private insurance.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline RapidRod

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Re: Whats your opinion? Should I start Meds?
« Reply #78 on: July 17, 2010, 05:21:15 PM »

I don't trust you.  Are you sure you didn't have any heath problem, hospitalization or the same and were not on meds since thirteen years of your diagnosis.   ::)
I wasn't on meds for 21 years after being diagnosed.

Offline Miss Philicia

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Re: Whats your opinion? Should I start Meds?
« Reply #79 on: July 17, 2010, 05:49:47 PM »
There's a man named Per Larson who wrote this book and gives seminars on HIV/financial planning at Friends In Deed in NYC, and has been doing so for 15 years.  He also offers private counseling for a fee.

But Larson is about more than just private insurance issues.  Getting someone to look at your own policy and riders to same has been provided by every local ASO where I've lived since diagnosis.
"I’ve slept with enough men to know that I’m not gay"

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #80 on: July 17, 2010, 06:16:10 PM »
wtfpoz,

I think you misunderstood a few of my points, just want to clear up my views.

1) I was talking about *general* attitude towards HAART, not telling you when to start. Hence my comment about acting like a child - it was more in regard to your dissatisfaction that HAART is not perfect. All I meant is that we should be grateful it is there since sooner or later all of us will need it.
2) I think your idea to start treatment after breaching 500 is reasonable - that's the latest American recommendation (and I think American doctors are the best :)
3) I would really encourage you to investigate the viability of using generic Atripla. In the thread I referred to earlier Ann and a few others have given references to people who do, etc. If you are worried about being able to afford HAART - and the online pharmacy is selling legit generic version of Atripla for $150 a month - it would be a good idea to know.
I would be skeptical about some Indian company selling fake stuff - IF these drugs actually cost anything to make. But they really do not - hence most of the $150 is pure profit. So it is in the interest of the seller to sell you the real deal forever, rather than sell you a Tylenol for a few months before you realize it's fake.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #81 on: July 17, 2010, 06:20:56 PM »

Give me a break. Condoms don't cost tens of thousands of dollars/pounds to purchase every year and I don't care how much sex a person is having. I find the whole "treat to stop onward infections" idea to be rather offensive - as though I cannot be trusted to use condoms.

C'mon - all of us failed to use condoms in the first place, hence got ill. And majority of people actually get sick from random encounters - ie they *should* be smart enough to use them. Unfortunately they impair the sexual experience - otherwise everybody would just use them.
So the fact that people don't always use condoms is just a fact of life. The key is to recognize it and deal with it, rather than expect people to change.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline mecch

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Re: Whats your opinion? Should I start Meds?
« Reply #82 on: July 17, 2010, 06:28:29 PM »
And majority of people actually get sick from random encounters

Where do you get these figures?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #83 on: July 17, 2010, 06:37:43 PM »
Where do you get these figures?

This is a combination of common sense and observation of this forum:

1) Common sense: venereal diseases are generally acquired from new partners. People who are in monogamous relationships would only get it IF their partner strayed and passed it to them. While can happen - it's a second order effect (probability that one's partner strays * probability he gets sick)

2) Observation of this forum - the people who got ill from their longstanding partners are few and between.  Most people either don't talk about it or actually say that 'they should've known better'
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline mecch

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Re: Whats your opinion? Should I start Meds?
« Reply #84 on: July 17, 2010, 06:52:38 PM »
Overdetermined once again, and not very scientific. I thought you aspired to be free research assistant.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #85 on: July 17, 2010, 07:22:42 PM »
Overdetermined once again, and not very scientific. I thought you aspired to be free research assistant.

what is overdetermined?

Look - to me this is just common sense. Here is a paper that describes the model: http://aris.ss.uci.edu/~lin/56.pdf

Do you think otherwise?
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline RapidRod

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Re: Whats your opinion? Should I start Meds?
« Reply #86 on: July 17, 2010, 07:44:17 PM »
what is overdetermined?

Look - to me this is just common sense. Here is a paper that describes the model: http://aris.ss.uci.edu/~lin/56.pdf

Do you think otherwise?
AIDS 1997, don't you have anything that is not outdated?

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #87 on: July 17, 2010, 07:51:43 PM »
AIDS 1997, don't you have anything that is not outdated?

It's a MATHEMATICAL model of how disease spreads. In math the pace and nature of scientific progress is very different from medicine/biology. For example the math developed by the Greeks is just as relevant today - which we can't say about their views on other sciences :)

My guesstimate is that maybe 5-10% of infections happen within relationships.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline wtfimpoz

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Re: Whats your opinion? Should I start Meds?
« Reply #88 on: July 17, 2010, 08:01:26 PM »
It's a MATHEMATICAL model of how disease spreads. In math the pace and nature of scientific progress is very different from medicine/biology. For example the math developed by the Greeks is just as relevant today - which we can't say about their views on other sciences :)

My guesstimate is that maybe 5-10% of infections happen within relationships.

Boze has a point.  This is a case of overdebating the obvious.  Even if the overwhelming bulk of anecdotal evidence didn't bear this out, common sense does.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline mecch

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Re: Whats your opinion? Should I start Meds?
« Reply #89 on: July 18, 2010, 06:24:18 AM »
"Not being in a relationship" is not the same as "random encounters"

Though I can support epidemiological models of disease spread, I also think you build arguments based on hunches and what makes sense to you. We have seen prejudices and biases creep into your sweeping arguments before.  Show us real epidemiology, recent research, or just say "I THINK" and not that sneaky way you have of building arguments on your emotional and psychological needs and passing them off as "shared", "common", or even "science", or "fact".

Overdetermined in the Freudian sense - that's the vibe I get from a lot of your more longer-winded posts. Arguments as symptoms - coming out of your own psychological and emotional needs and hurts.

Its nothing personal, I admire your enthusiasm.  Put it this way, since you have appointed yourself the "free research assistant" you can consider that you now have a "peer review" process for such wind-bag arguments.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #90 on: July 18, 2010, 08:07:02 AM »
C'mon, let's not start the 'you say what you do because you actually hurt inside'. I am very familiar with the method of analyzing the messenger rather than the message. And I don't want to come back via same route (as I've seen plenty others use personal information gleaned from random posts in rebuttals, which I consider kinda weak), so I just propose we don't go down that road.

Yes - the idea that most people in Western world got HIV from random encounters is not based on research - to me it's just logical. A random encounter is sex outside a relationship. Relationship doesn't mean marriage - just a stable partnership (could even be concurrent).

If this strikes you as moralistic - I'm sorry, I'm just calling it how I see it.

==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #91 on: July 18, 2010, 09:27:11 AM »
Put it this way, since you have appointed yourself the "free research assistant" you can consider that you now have a "peer review" process for such wind-bag arguments.

Fair comment. If you post your theories here, you're going to be subject to a "peer review" process.

I was in a relationship when I got my lurgy. It was brought home to me. This happens more often than you seem to realise.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #92 on: July 18, 2010, 10:21:16 AM »
Fair comment. If you post your theories here, you're going to be subject to a "peer review" process.

I was in a relationship when I got my lurgy. It was brought home to me. This happens more often than you seem to realise.

Yeah, I think that's reasonable - i'm only happy to have my ideas subjected to scrutiny.

I also remember your story - as a few others who specifically mentioned it. There certainly is a sense of 'it's really unfair' to that method of transmission, which I think mitigates (or rather totally removes) the 'guilt factor'.
But majority of people here never mention this - which makes me assume that they got it outside of relationships.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline max123

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Re: Whats your opinion? Should I start Meds?
« Reply #93 on: July 18, 2010, 11:04:17 AM »
the op's topic question is probably the most compelling of all, for the majority of us afflicted with hiv.

unfortunately, the current hiv meds funding issues here in the usa has thrown an additional curveball into the mix. but, in attempting to stay on track with the topic essence from a physical health standpoint, most respondents raised some excellent points (albethey polar).

there is building & published evidence suggesting that keeping cd4 above 500 may reduce the incidence of hiv related, hiv exacerbated & non-hiv related disease in us pozzies. many seasoned forum members suggest deferring arv/haart until later on in the course of disease (350-400 and, or <500 cd4 range); the rationale being that the potential long term effects of meds use is unknown (an agreed upon point).  however, from having participated in this forum for a year now, it is apparent to me that many forum members suffer from ill effects such as hiv related diarrhea, chronic fatigue, osteoarthritis, etc... it also appears that many of these same forum members were also either diagnosed in advanced stages of hiv with low cd4 counts, had poor access to competent medical care, had no access to less toxic meds, do not take meds, etc....the prevailing common observation that i see is that many of said forum members whom for one reason or another, maintained cd4 counts less than 500, seem to make up a large majority of those suffering from so many maladies. note: this is merely an observation and not a conclusion. this may be totally coincidental or not. maybe it's simply the expected course of events that comes along with being poz. truth is, i really don't know, which is why i'm asking: are any of you all, that are suffering from hiv related, hiv exacerbated & non-hiv related maladies and that have maintained cd4 counts <500, feel these maladies may have been eliminated or lessened by having started meds earlier, e.g. at cd4 at, or > 500?

newt raised a really good point in citing the importance of the smart study. but until the results are published several years from now, it seems to me the best deciding factors on when to start meds are found in to date studies, your doc, and of course, through knowledge shared on this forum. it's all we really have...

max
« Last Edit: July 18, 2010, 01:03:25 PM by max123 »
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline northernguy

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Re: Whats your opinion? Should I start Meds?
« Reply #94 on: July 18, 2010, 11:52:58 AM »
Its interesting that most of the discussion here has focused on cd4.  What about %, I thought that was supposed to be the more reliable indicator?

As in my signature, my cd4's were OK, on a slow downward trend but the % had shown a consistent low point.  Coupled with my skin issues I used that as the basis to start taking meds, my doc probably would have rather waited a bit longer.  As luck would have it my skin issues didn't change and my cd4 dropped after starting!  I'm beginning to think its all voodoo...  :P
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline Hellraiser

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Re: Whats your opinion? Should I start Meds?
« Reply #95 on: July 18, 2010, 12:13:31 PM »
C'mon, let's not start the 'you say what you do because you actually hurt inside'. I am very familiar with the method of analyzing the messenger rather than the message. And I don't want to come back via same route (as I've seen plenty others use personal information gleaned from random posts in rebuttals, which I consider kinda weak), so I just propose we don't go down that road.

He's not saying it to attack you as a person, but you do something you may not be aware of:  You pawn your experience off as fundamental truth.  We're all guilty of it to varying degrees, but you're probably the most pronounced case on these forums.  You've utilized studies to back your experience and opinion but have you ever changed your mind due to scientific evidence?  That's rhetorical by the way.  I'm only a couple of months ahead of you in diagnosis and treatment and I certainly don't know everything there is to know, but I came from a place of complete ignorance where HIV was concerned and realize that there is a lot of information to take in.  When confronted with evidence that profoundly contradicts what I think I question it and then if it is corroborated by another report and group consensus I tend to adopt it.  What I've noticed you tend to do is fight tooth and nail for what you think is right regardless of what may be staring you in the face.

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #96 on: July 18, 2010, 12:52:16 PM »
There certainly is a sense of 'it's really unfair' to that method of transmission, which I think mitigates (or rather totally removes) the 'guilt factor'.
But majority of people here never mention this - which makes me assume that they got it outside of relationships.

Not for me, I've always taken full responsibility for 1 - not insisting on monogamy from him and kicking him to the kerb if/when he refused and 2 - not insisting on condoms even though I knew he wasn't being monogamous. I thought the worst he could bring home was chlamydia. Stupid me. No chlamydia, just the biggie. Sod's law.

But majority of people here never mention this - which makes me assume that they got it outside of relationships.

I think a lot of people don't mention it or gloss over it because it's not necessarily a nice thing to admit that your lover is seeing others behind your back.

And a lot more people end up infected even in monogamous relationships because they never bothered to test before not using condoms together. In other words, one partner unwittingly brought pre-existing hiv into their monogamous relationship.

See, this is one of the reasons why so many people look down their noses at us - they assume that if we got the butt flu, we had to be Promiscuous Sluts and Hooray Henry Whores. It simply ain't so.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #97 on: July 18, 2010, 01:06:17 PM »
He's not saying it to attack you as a person, but you do something you may not be aware of:  You pawn your experience off as fundamental truth.  We're all guilty of it to varying degrees, but you're probably the most pronounced case on these forums.  You've utilized studies to back your experience and opinion but have you ever changed your mind due to scientific evidence?  That's rhetorical by the way.  I'm only a couple of months ahead of you in diagnosis and treatment and I certainly don't know everything there is to know, but I came from a place of complete ignorance where HIV was concerned and realize that there is a lot of information to take in.  When confronted with evidence that profoundly contradicts what I think I question it and then if it is corroborated by another report and group consensus I tend to adopt it.  What I've noticed you tend to do is fight tooth and nail for what you think is right regardless of what may be staring you in the face.

Fair enough. But I'm not sure I have actually "fought" a view that is backed up by scientific fact. For example on this question - we have complete lack of data. So it's really just a matter of differing opinions.

I'd be happy to even conduct a small poll to see what it's actually like.

And a lot more people end up infected even in monogamous relationships because they never bothered to test before not using condoms together. In other words, one partner unwittingly brought pre-existing hiv into their monogamous relationship.

See, this is one of the reasons why so many people look down their noses at us - they assume that if we got the butt flu, we had to be Promiscuous Sluts and Hooray Henry Whores. It simply ain't so.

This may be more true for women, not sure about men. Given that men make up majority of new infections - their slutiness outweighs.



==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline Ann

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Re: Whats your opinion? Should I start Meds?
« Reply #98 on: July 18, 2010, 01:24:42 PM »
This may be more true for women, not sure about men. Given that men make up majority of new infections - their slutiness outweighs.

I'm going by what I've read here since the spring of 2001 - over nine years of reading people's experiences. You've been here a little over three months and don't have the same perspective.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Boze

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Re: Whats your opinion? Should I start Meds?
« Reply #99 on: July 18, 2010, 01:31:51 PM »
I'm going by what I've read here since the spring of 2001 - over nine years of reading people's experiences. You've been here a little over three months and don't have the same perspective.

Fair enough - so what % of infections would you attribute to 'within relationship'?

I also think there is a  reporting bias - the less 'guilty' are more likely to describe their experience.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

 


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