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Author Topic: Cells around 390. Skins problems appear. To start or not to start?  (Read 12994 times)

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Offline Moffie65

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #50 on: April 06, 2010, 11:29:29 AM »
Buffalo Boy.

Do your damn homework.  Once the immune system is damaged from depletion of CD4s, it never, I said never, will work the way the original Immune system worked in a body.  Naive immune cells which are grown after starting HAART, don't ever have the same immune capability that the ones you grew while in childhood.  Why the hell would you ever encourage anyone to delay the start of meds, while their immune system continues to die.

Damn, you are really not working with a full deck of facts my dear friend.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline buffaloboy

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #51 on: April 06, 2010, 11:45:35 AM »
@Moffie: I've made it clear that the information I'm posting is based on clinical guidelines in the UK and this is a position endorsed by most HIV doctors here. I'm not just pulling numbers out of the air and if you have an issue then you need to take it up with the relevant authorities here, rather than petulantly behaving as if anyone who has the audacity to state their country's official information is waging a personal attack on you.


Offline Ann

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #52 on: April 06, 2010, 11:55:02 AM »
The European and UK guidelines aren't really all that different to the US ones. They both recommend starting at 350 (it used to be when you got to around 200) but the European and UK guidelines say that it isn't necessary to start above 350 unless there are other problems present. Over here, they're waiting on the results of the SMART study before they make any further changes.

http://www.bhiva.org/documents/Guidelines/Treatment%20Guidelines/Current/090708TreatAdd.pdf

http://www.europeanaidsclinicalsociety.org/Guidelines2009/G1_p14.htm

http://i-base.info/guides/starting/cd4-count-and-risk-of-illness

The European guidelines also include advice for the doctor re assessment of the readiness of the patient to start meds, which is very important when you consider adherence issues.

http://www.europeanaidsclinicalsociety.org/Guidelines2009/G1_p10.htm

I honestly don't see any problem with the OP waiting for another set of results. If he feels ready and willing to start meds, fine. However, if he wants to wait, that's fine too. I've been poz for thirteen years now and I'm still not on meds. I've had a few low CD4 results in that time, but they've always gone back up. My last result was 576, 26% and my lowest ever was 281, 23%. My health is good. My lab history is in my profile.

At the end of the day, this is a decision the OP is going to have to make in conjunction with his doctor. It isn't the decision of people posting on a website.

Ann
Condoms are a girl's best friend

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"...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 Moffie65

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #53 on: April 06, 2010, 11:58:45 AM »
Buffalo

Personally, I don't care what they say in the UK, or the CDC for that matter, I almost always speak from a position of knowledge of living with, and studying this bug for the last 27 years.  Go ahead and quote all the sources you want; I will pay attention to what you say when you start giving me quotes from first hand experience of someone who is not only a researcher, but a person living with the virus.  Now you have something really constructive to do, because so far, I cannot find someone in HIV research who is both knowlegeable from a science point of view, and also living with the bug.  Oh, sorry, there are several people on this site who qualify for that description, but most have tired of posting because of reasoning like yours.
« Last Edit: April 06, 2010, 12:02:01 PM by Moffie65 »
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Moffie65

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #54 on: April 06, 2010, 12:01:05 PM »
I am really sorry Ann, but on this one, we will agree to disagree.  I personally don't know why you are waiting to take meds, but then I respect your decision, and will not try to pursuade you otherwise.  You certainly know all the facts, and I do hope you reconsider soon. 

Love ya.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Miss Philicia

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #55 on: April 06, 2010, 12:01:30 PM »
but the European and UK guidelines say that it isn't necessary to start above 350 unless there are other problems present.

Which was the purpose of replying to the opening post in the first place -- he wanted to know if skin issues would diminish by starting meds.  It's also unclear whether or not he's US or UK, but seeing as how the majority on this forum by a large margin are US, it's safe to make the assumption until the OP claims otherwise (unless I'm missing where he said he was in the UK).
"Iíve slept with enough men to know that Iím not gay"

Offline Ann

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #56 on: April 06, 2010, 12:08:02 PM »
Moffie, reasoning like mine? You mean the reasoning of the hiv experts in Europe and the UK. We have smart people on this side of the pond too you know.

I may not have been living with hiv for 27 years, but 13 years isn't exactly a short time either. I'm living proof that meds aren't always necessary. When my counts say I need to start, I will, but until then I'm going to enjoy being med free - and healthy.

Miss P, the skin issues the OP is talking about aren't the sort of problem that would necessitate his starting meds from the European or UK point of view. Did you look at the links I supplied? And by the way, I can confirm the OP is posting from somewhere in Europe.
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 Miss Philicia

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #57 on: April 06, 2010, 12:12:27 PM »

Miss P, the skin issues the OP is talking about aren't the sort of problem that would necessitate his starting meds from the European or UK point of view. Did you look at the links I supplied? And by the way, I can confirm the OP is posting from somewhere in Europe.

That's cool -- but my point was that the OP asked.  It's not like people here are making up things just to argue.

Nice to know his location, though of course he didn't disclose it so in the same manner as pertains to this thread any discussion of CDC differences was still relevant until we all knew where she/he lived.

At any rate, I'd still say CDC guideline discussion is relevant as past history shows that generally the Euros follow -- we can bet money on this if you so desire, my dearest one.
"Iíve slept with enough men to know that Iím not gay"

Offline buffaloboy

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #58 on: April 06, 2010, 12:15:48 PM »
'''Personally, I don't care what they say in the UK, or the CDC for that matter...''

This is now going into the realms of the absurd. You've called people who disagree with your views 'denialists' and yet you then say that you don't care what BHIVA or CDC (who've you've labelled as 'corrupt') have to say on the matter, who issue guideline to doctors.

So how ironic that, in effect, you are saying that patients should ignore their doctors because the advice they are giving them is not in their best interests. That sounds very close to a 'dissident'/'denialist' argument to me, and goes some way in explaining why there's still so much confusion around HIV treatments especially amongst people who are newly diagnosed.
« Last Edit: April 06, 2010, 12:20:52 PM by buffaloboy »

Offline Ann

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #59 on: April 06, 2010, 12:19:54 PM »

At any rate, I'd still say CDC guideline discussion is relevant as past history shows that generally the Euros follow -- we can bet money on this if you so desire, my dearest one.


Well, as I said earlier, the European/UK guidelines aren't really all that different to the US ones. We need to remember that the US guidelines don't say to start AT 500, they say to start BETWEEN 350 and 500. That means one could wait until they were around 350 - consistently - before starting and still be within the guidelines.

When the results of the START study are published, maybe our guidelines will be changed to BETWEEN 350 and 500 instead of AT 350. Who knows. What I DO know is that I will wait until my counts are consistently around 350, or I start having problems, regardless of the guidelines. What others do is their business.
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 Miss Philicia

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #60 on: April 06, 2010, 12:41:42 PM »
Well, as I said earlier, the European/UK guidelines aren't really all that different to the US ones. We need to remember that the US guidelines don't say to start AT 500, they say to start BETWEEN 350 and 500. That means one could wait until they were around 350 - consistently - before starting and still be within the guidelines.

When the results of the START study are published, maybe our guidelines will be changed to BETWEEN 350 and 500 instead of AT 350. Who knows. What I DO know is that I will wait until my counts are consistently around 350, or I start having problems, regardless of the guidelines. What others do is their business.

Guess you missed my earlier post


So instead of recommending 350 as the cut off, they now say between 350 and 500.  Basically this means not to keep waiting until you're at 350.
"Iíve slept with enough men to know that Iím not gay"

Offline buffaloboy

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #61 on: April 06, 2010, 02:21:45 PM »
What I DO know is that I will wait until my counts are consistently around 350, or I start having problems, regardless of the guidelines. What others do is their business

I think this is the point. Presenting treatment in terms of rigid 'rules', as some people on here are inclined to do, doesn't help anyone. It's ultimately an individual choice and no amount of hectoring by people who claim to have good intentions, or decades of 'first hand experience', should, or will, change that.
« Last Edit: April 06, 2010, 02:25:45 PM by buffaloboy »

Offline Nestor

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #62 on: April 06, 2010, 02:35:01 PM »
I am really sorry Ann, but on this one, we will agree to disagree.  I personally don't know why you are waiting to take meds, but then I respect your decision, and will not try to pursuade you otherwise.  You certainly know all the facts, and I do hope you reconsider soon.  

Love ya.

Ann can speak for herself, as can the OP.  I can tell you one reason why I am waiting; a full discussion can wait until I have time to start my own thread on the subject, so as not to hijack this one.  The reason is articles like this one--and as everyone knows who has been reading this website for any amount of time, it is but the latest example of several I could have chosen:  

http://www.aidsmeds.com/articles/renal_kidney_tenofovir_1667_18041.shtml

The point appears to be that with every year on meds, one's risk for kidney failure increases.  That would appear to me to be a powerful argument for giving oneself a few more years before starting--not, of course, to the point of waiting for dire numbers.  

Moffie, you have made a good case here:

Quote
Once the immune system is damaged from depletion of CD4s, it never, I said never, will work the way the original Immune system worked in a body.  Naive immune cells which are grown after starting HAART, don't ever have the same immune capability that the ones you grew while in childhood.  Why the hell would you ever encourage anyone to delay the start of meds, while their immune system continues to die.

These are important things to keep in mind, although my own doctor seems to feel that the dangerous depletion of memory-cells begins to occur below 350, not above.  What is your definition of an immune system "damaged by depletion"?  The numbers Lifer quotes do not suggest "depletion" to me; neither do Ann's.

The adverse effects of long-term HAART and those of the unchecked virus both need to be kept in mind, and some balance struck between them.  I agree that waiting until 100 t-cells is dangerous.  But to start ARVs needlessly, with decent numbers and at a time when one might very well have a chance for years of med-free life, strikes me as being every bit as foolhardy.  When we have people walking around who have been on atripla or isentress for 30 years we'll have some actual information to go on; until then we're all stuck with intuition and half-truths.  

Lifer's numbers are borderline and, most importantly to me, seem stable, not declining.  In the absence of percentage, that looks to me like a wait-and-see situation.  The skin problem is not in itself a reason to start HAART unless Lifer has a strong intuition that his body is telling him that the time has come and that the skin problem is the handwriting on the wall.  In that case, I would certainly not advise him not to start.  
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline Miss Philicia

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #63 on: April 06, 2010, 02:47:15 PM »
What I DO know is that I will wait until my counts are consistently around 350, or I start having problems, regardless of the guidelines. What others do is their business

I think this is the point. Presenting treatment in terms of rigid 'rules', as some people on here are inclined to do, doesn't help anyone. It's ultimately an individual choice and no amount of hectoring by people who claim to have good intentions, or decades of 'first hand experience', should, or will, change that.

Well hello there Captain Obvious -- of course it's a personal choice.  Nobody is going to stand over someone with 50 t-cells and ram pills down their throat.
"Iíve slept with enough men to know that Iím not gay"

Offline Nestor

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #64 on: April 06, 2010, 02:52:21 PM »
Furthermore, may I urge, beseech, and beg Lifer and everyone who is interested in this question to read the following article?  

http://www.poz.com/articles/180_944.shtml

The new guidelines and the articles surrounded them and the massive cohort study upon which they were based I have read with acute interest.  They present many more questions than answers, to me at least.  The above article, which shows where we were "the day before yesterday", suggests, to me, a dose of caution before zealously embracing the latest trends.  

A few lines that stand out to me:

"If nothing else, these treatment newbies could have waited a few years for kinder, gentler options."

That's it--who knows what 2012 or 2013 will bring?  If holding out until 2013 means starting with a far better treatment option than any that is available now, then won't it have been worth it?  

"I kick myself now because I fell for the party line and put patients on treatment when they didn't need it," Keith Henry says. "What we were doing was just not good medicine."

Of particular interest  to those who seem to think that Americans have greater wisdom that Europeans:

Across the Atlantic, the European medical community was taking a sharply different approach. Treatment typically wasn't initiated until patients' CD4s fell below 350 -- whereas the U.S. guideline, set in 1997, put the threshold at 500. When European HIVers did finally begin treatment, they were often given a non-nuke regimen. "We were pretty keen on the NNRTIs over here from the get-go," says Brian Gazzard, MD, a leading professor of HIV medicine at Chelsea Westminster Hospital in London. Some 80 percent of his patients have stayed on non-nuke regimens for at least two or three years.

According to Gazzard, it wasn't that Europeans knew better -- they just knew what they didn't know. The assumption in the U.S. was that HIV was like any other infectious disease: You threw as much medicine at it as you could, and eventually it would be subdued -- or eradicated. "We realized that there was no evidence that this was true for HIV," says Gazzard. So the Brits doled out drugs more sparingly. Treatment strategies were designed from the first with an eye on the long term.

Little of this Old World wisdom managed to cross the pond. Here, not only magazines (such as POZ) but bus shelters and subway cars were papered with protease ads. Physicians too were heavily marketed. Antiretrovirals became a $1 billion-a-year business. AIDS doc Keith Henry recalls being told repeatedly at pharma-sponsored seminars that the goal of treatment was undetectable viral load. "They were pressuring us to give out these drugs," he says. "They made it seem like it was almost malpractice not to put people on PIs if they had a detectable viral load."


I do not see how anyone can read this and say that the Europeans are following us!

And most importantly of all:

Last year, the U.S. government lowered the "start HAART" time from 500 to 350 CD4s -- finally bringing us in line with the cautious Brits. "Who was right in retrospect? The British," says Miles. "Were we too proud to recognize this in 1997? Probably. Should patients take what we say with a grain of salt now? Yes."

That's just what I'm doing with the new guidelines and all the emotional imperatives (Start ASAP!!!!) that some people like to fling about: I'm taking them with a grain of salt.
« Last Edit: April 06, 2010, 02:55:22 PM by Nestor »
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline Miss Philicia

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #65 on: April 06, 2010, 03:13:58 PM »
Nothing like a link that is almost a decade old.
"Iíve slept with enough men to know that Iím not gay"

Offline Nestor

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #66 on: April 06, 2010, 03:27:36 PM »
Nothing like a link that is almost a decade old.

I would question the sanity of someone who did not want to know where we were, as I put it when I introduced that link, "the day before yesterday."  If we do not remember history we are doomed to repeat it. 

That perhaps explains why we are, in fact, repeating history right now--going back into "hit hard hit early" as if we hadn't already been there, done that, and learned the lessons: because there is a culture of never remembering anything that's more than six months old. 

In fact I am deeply troubled by the apparent amnesia of some people who believe our doctors and researchers can do no wrong.  There they were, a mere eight years ago, saying that the last time they'd put out all this "start now start now start now" pressure they'd been grievously mistaken.  They themselves are saying "in future, take what we say with a grain of salt." 
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline Matty the Damned

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #67 on: April 06, 2010, 03:40:05 PM »
Last time I checked western orthodox medicine shifted on a fulcrum called "informed consent" - you know that crazy idea that your doctor can only advise you on a particular course of treatment.

The ultimate fucking choice rests with the patient.

Makes things pretty fucking simple. For those who are worried that their doctors might be total fucking idiots, you're free to delay treatment until you're ready.

MtD

Offline buffaloboy

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #68 on: April 06, 2010, 04:09:47 PM »
Well hello there Captain Obvious -- of course it's a personal choice.  Nobody is going to stand over someone with 50 t-cells and ram pills down their throat.

I didn't say that anyone was suggesting that. But some people here would do well to be less dogmatic in their approach if they are genuinely interested in helping.

Offline Miss Philicia

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #69 on: April 06, 2010, 04:41:02 PM »
I would question the sanity of someone who did not want to know where we were, as I put it when I introduced that link, "the day before yesterday."  If we do not remember history we are doomed to repeat it. 


Yeah, it's not like I was on meds in 2002 or anything.
"Iíve slept with enough men to know that Iím not gay"

Offline jkinatl2

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #70 on: April 06, 2010, 04:48:02 PM »
I submit that some folks are more dogmatic because of the depth and breadth of their personal experience. People who saw hundreds of people die before HAART are forever marked by that experience. Just like people who managed to miss that dreadful time, yet saw people's lives (or their own) devastated by the first generation(s) of HAART are forever affected by THAT experience.

When to take meds is a seriously personal decision. And until someone is ready to seriously commit not only to the regimen (adherence, means to afford it, et al) but also to the degree of critical thinking which is absolutely essential to investigating the regimen, then they stand a chance of setting themselves up for failure.

I certainly wish that critical thinking had not been abandoned by public school systems in the late seventies, here and abroad. Socratic methodology seems virtually absent in today's world, and that seems to be very evident by the often hysterical interpretation of drug precautions seen in these forums - and on the other end of the spectrum, the absolute neglect to investigate these powerful drug therapies until  unwanted effects begin to emerge.

It's simply too important a decision to make without the necessary information. And part of that necessary information is determining the validity and relevance of the sources, and the advent of critical thinking.

Any other method would be, in my opinion, a flippant response to an important situation. While soliciting information and opinion from those who are treatment-experienced is great part of the process, it is only that - a part of the process. The virus reacts differently in everyone, subject to a myriad of variables from lifestyle, robustness of the existing immune system (and the strength/strain of the attacking virus) and environmental/economic variances.

I guess the trick on forums like this is interpretation. There are people so afraid of medical intervention and who cling to each and every case study of drug impact that they not only refuse to consider the meds, but advocate that refusal for others.

On the other end of the spectrum, there are people who do not question medical authority for a moment, but dogmatically advocate treatment regardless of the consequences.

And yes, a third extreme seems to be emerging; those who have experienced both ends of that spectrum, and are equally dogmatic about medical intervention, while at the same time questioning medical advice at every turn.

I consider myself a skeptic. I use a doctor because I trust that s/he is trained and informed to a degree that I am not. Not only about HIV and the meds used to treat it, but also about the human metabolic system, the advances in epidemiology, and the emerging sciences based not only on accessible human trials but in vitro studies as well as simian experimentation. Now, I have not always had that faith well placed. I have a few horror stories, as anyone who has a serious and chronic disease for over a decade can attest.

But those horror stories, while educational (to me at least) and entertaining at parties, are not the norm. They are the exception - but they have mandated that I stay on my toes as regards this disease and the meds used to treat it. They have also forced me to make very real assessments  of my own lifestyle, my own mental and physical health, and the obstacles and issues I bring to the medical table. I could only suggest that others try and do the same. Some of those issues are not evident to my doctor when we first begin our relationship. And some are very, very important.

Everybody wants to be the perfect patient, and make the best choices. But no one is, and no one always does. Being honest with that fact is the first step towards entering in a real, and realistic relationship with the medical community.

Thing is, the virus has a bad habit of not waiting around for us to make those important self-discoveries, for us to vacillate indefinitely, or for the perfect solution to present itself.

Empirical and anecdotal experiences are valuable tools. The third thing, the umame of health care, is self-awareness. Many people die - or do irreparable damage - waiting for that third part to manifest.



*edited for grammar and typos
« Last Edit: April 06, 2010, 05:34:44 PM by jkinatl2 »
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Matty the Damned

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #71 on: April 06, 2010, 04:55:57 PM »
JK, I love you so much.  :-*

MtD

Offline Moffie65

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #72 on: April 06, 2010, 05:31:26 PM »
Thank you JK.  Your words are apropos
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline buffaloboy

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #73 on: April 06, 2010, 07:24:03 PM »
http://www.poz.com/articles/180_944.shtml

Nestor: thanks for the link. If nothing else, it shows the extent to which medicine is as much an art as it is a science. The article was apposite in terms of providing context for this discussion and I'm sure many will readers will find it informative and interesting.

« Last Edit: April 06, 2010, 07:28:35 PM by buffaloboy »

Offline Matty the Damned

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #74 on: April 06, 2010, 07:31:02 PM »
http://www.poz.com/articles/180_944.shtml

Nestor: thanks for the link. It was apposite in terms of providing context for this discussion and I'm sure many will readers will find it informative and interesting.



POZ magazine? Pffft!

MtD

Offline Miss Philicia

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #75 on: April 06, 2010, 07:47:18 PM »
omg, it's like the newest generation of HIV meds doesn't even exist to some people here

Bring it on with those 8 year old articles!
"Iíve slept with enough men to know that Iím not gay"

Offline buffaloboy

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #76 on: April 06, 2010, 07:52:51 PM »
POZ magazine? Pffft!

MtD


Huff and puff as much as you like if you think it will make a difference to anybody (which it won't).

Offline Matty the Damned

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #77 on: April 06, 2010, 08:04:39 PM »
Huff and puff as much as you like if you think it will make a difference to anybody (which it won't).


Oh settle the fuck down. I'm just having a little troll. Next time I'll put in a smileh, so you can tell. :)

Seriously read what JK posted above. He has teh wisdom. You should learn from him.

MtD

Offline buffaloboy

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #78 on: April 06, 2010, 09:00:54 PM »
Oh settle the fuck down. I'm just having a little troll. Next time I'll put in a smileh, so you can tell. :)

MtD

I love the way that those who advocate starting treatment NOW, are the ones whose feathers  are well and truly ruffled. It's very telling. :)

Offline Nestor

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #79 on: April 06, 2010, 10:02:10 PM »
Yeah, it's not like I was on meds in 2002 or anything.

Ummm...do you think I posted that article solely for your benefit? I know you already know all about HIV in 2002--you were there.  I posted it for people like myself, who are relatively new to this and are trying to learn as much about it as we can.  Every shred of information is useful.  

omg, it's like the newest generation of HIV meds doesn't even exist to some people here

I really hope you weren't directing that to me.  I know so much about atripla and isentress I could give a lecture on them.  I made it my business to gather that information because I want to be educated on possible treatment options before the knowledge becomes necessary.  If my t-cells crash tomorrow I may not be in the physical or mental state to gather it then.  

I know you were not directing it to BuffaloBoy, who has had personal experience with the newest generation of HIV meds. 

To the degree that the article discusses the specific problems of protease inhibitors and the early history of non-nukes, yes, it is of purely historical interest: but even that is not to be sniffed at.  Obviously I posted the article because of its larger point: guidelines and the people making them are very fallible.  To say that all the lessons and cautions of that article should be thrown out the window with this latest set of guidelines, we would need to argue that somehow everything in the larger scene has changed since then.  That case has not been made convincingly, to say the least.  

Quote
Bring it on with those 8 year old articles!

Well, sorry, I don't happen to have any other 8 year old articles which are a propos to this discussion...but here is something almost as good: a five-year-old interview with our very own Dr. J. Sonnabend, whose blog has recently enriched Poz.com.  The whole interview should be studied with care by every person who is living with HIV, but the relevant part to this thread is the following.  The context is the extreme success of Dr. Sonnabend's patients:

BH: This is surprising since the conventional wisdom says that if you've been treating gay men for a long period of time, they've gone through a lot of different regimens and they end up resistant to everything. So what was different about the way you were treating them?

JS: It may have to do with what I have not done. First, I have not started people on treatment too early. When the original version of the treatment guidelines came out I thought they were very, very wrong headed. I wrote a response ó I suggested that the way we resolve clinical uncertainly is by doing proper trials, not by issuing guidelines. HIV medicine had already moved somewhat away from the traditional way of trying to find answers by doing many well-designed trials and was moving toward relying on the consensus of a panel of experts.

I thought they seemed to be gazing into a crystal ball as to the long-term effects of therapy. If these drugs were known to be completely non-toxic, it wouldn't be a problem. But the potential toxicities could not have been known then, and of course since then problems have come up; lipodystrophy, diabetes, etc.

So the drugs are quite potent. And the one thing an experienced doctor would think about, I believe, in deciding whether or not to intervene in a patient is the rate of progress of the disease in that particular patient. One of the striking things about HIV is the huge variation in the rates of disease progression. But what those guidelines did was to ask one to make a decision based on a snapshot. Well, we know about blips in viral load; fluctuations in CD4 counts; we know about all sorts of things that say a snapshot does not provide enough information.

The fact is there are no emergencies in HIV medicine ó with the exception of people with very low T-cells, of course. But if you're dealing with anybody above 200, there's no emergency; it's not life and death, and you can wait a little while to get a fuller picture. So I think what may have been important in my practice was that I didn't follow the guidelines as they were written when they first came out. As it turns out, more recent revisions of the guidelines seem to be a little bit more in accord with what I actually did.

BH: What would you do?

JS: I would suggest starting treatment at a time when there was a consistent increase in viral load over maybe six or nine months; a decline in CD4 cells; or development of symptoms, whether it be thrush or some other. So it was individualized, and I think it is very important to individualize treatment to the rate of progress. In effect that translates into not staring early. I would start patients where there were stable signs of progression. There were other cases where people were worried and wanted to start treatment and of course I didn't withhold it.


The full interview--all of which is a must-read--can be found here: http://www.aegis.com/pubs/gmhc/2005/GM190903.html

JKinatl, what a fantastic statement!  Really a lot to think about there.  

Lifer--I really hope you do not feel that we have hijacked your thread and run away with it.  The fact is that the "when to start" question is of overwhelming, life or death importance to all of us.  And since the introduction of the new guidelines, a major discussion has been taking place between those who trust those guidelines and those who question them; that discussion is nowhere near finished and it tends to burst forth anew in every thread by someone questioning whether his or her time to start has come.  For those of us who have not yet started, our entire future in the only life we have on this earth hangs in the balance; for those who are already on treatment there is obviously a selfless aspect to the vehemence of their advice.  I don't agree with everything Moffie and the other members of the "START ASAP" team are saying, I certainly don't appreciate some of the saltier remarks they've flung at those of us who disagree with them (denialists?  seriously?) and I sometimes get irked by what seems like an "invasion of the body-snatchers" scenario in which everyone who has started meds himself suddenly starts urging everyone else to start immediately too.  But I really, really, really appreciate the time, the energy, and the passion which they put into helping us make the decision that for them is over and done with.  I think we are all intensely aware of what the virus could be doing in our bodies.  When we have people walking around who have been on atripla for thirty years, then we'll know the other side of the coin.  Until then we're really all groping in the dark and I hope we all have the humility to admit that.  
« Last Edit: April 06, 2010, 10:49:57 PM by Nestor »
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline buffaloboy

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #80 on: April 07, 2010, 09:01:53 AM »
 ''I don't agree with everything Moffie and the other members of the "START ASAP" team are saying, I certainly don't appreciate some of the saltier remarks they've flung at those of us who disagree with them (denialists?  seriously?) and I sometimes get irked by what seems like an "invasion of the body-snatchers" scenario in which everyone who has started meds himself suddenly starts urging everyone else to start immediately too''

This is extremely well put, especially the part of text that I've highlighted in bold. There's curious 'I'm on meds, so you must be too' mentality on these forums, and as this thread shows, some even urge eschewing official guidelines to start medication. I'm slightly less charitable than Nestor in my assessment of this and am not entirely convinced that it comes from a place of 'love'. Rather, it seems to be fuelled more by a sense of being unable to tolerate any differences within the subculture of people living with HIV - which is a feature of many minority groups.

All this matters because I'd always worked on the assumption that this website was  a place for all people with HIV to come and share their experiences, but I'm beginning to wonder how many people give up here because they get fed up with the one note advice to start meds immediately ('If you're not on meds, you're not welcome in the club'), no matter how inappropriate that may well be to someone's individual circumstances.

Offline Matty the Damned

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #81 on: April 07, 2010, 09:08:33 AM »
''I don't agree with everything Moffie and the other members of the "START ASAP" team are saying, I certainly don't appreciate some of the saltier remarks they've flung at those of us who disagree with them (denialists?  seriously?) and I sometimes get irked by what seems like an "invasion of the body-snatchers" scenario in which everyone who has started meds himself suddenly starts urging everyone else to start immediately too''

This is extremely well put, especially the part of text that I've highlighted in bold. There's curious 'I'm on meds, so you must be too' mentality on these forums, and as this thread shows, some even urge eschewing official guidelines to start medication. I'm slightly less charitable than Nestor in my assessment of this and am not entirely convinced that it comes from a place of 'love'. Rather, it seems to be fuelled more by a sense of being unable to tolerate any differences within the subculture of people living with HIV - which is a feature of many minority groups.

All this matters because I'd always worked on the assumption that this website was  a place for all people with HIV to come and share their experiences, but I'm beginning to wonder how many people give up here because they get fed up with the one note advice to start meds immediately ('If you're not on meds, you're not welcome in the club'), no matter how inappropriate that may well be to someone's individual circumstances.

No one here can make you do anything. Either take the pills or don't take them. It's a matter for you and your 85 CD4 cells.

Personally I hope you do take the pills. My life would be so much less fulfilling if you weren't around to harrangue me.

MtD

Offline Miss Philicia

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #82 on: April 07, 2010, 09:13:10 AM »
''I don't agree with everything Moffie and the other members of the "START ASAP" team are saying, I certainly don't appreciate some of the saltier remarks they've flung at those of us who disagree with them (denialists?  seriously?) and I sometimes get irked by what seems like an "invasion of the body-snatchers" scenario in which everyone who has started meds himself suddenly starts urging everyone else to start immediately too''

This is extremely well put, especially the part of text that I've highlighted in bold. There's curious 'I'm on meds, so you must be too' mentality on these forums, and as this thread shows, some even urge eschewing official guidelines to start medication. I'm slightly less charitable than Nestor in my assessment of this and am not entirely convinced that it comes from a place of 'love'. Rather, it seems to be fuelled more by a sense of being unable to tolerate any differences within the subculture of people living with HIV - which is a feature of many minority groups.

All this matters because I'd always worked on the assumption that this website was  a place for all people with HIV to come and share their experiences, but I'm beginning to wonder how many people give up here because they get fed up with the one note advice to start meds immediately ('If you're not on meds, you're not welcome in the club'), no matter how inappropriate that may well be to someone's individual circumstances.

Oh please, Mary -- people here urge you to be on meds because you had 85 t-cells five f*cking months ago -- dare I ask if you've had those numbers checked out again since then?  Let's just cut the crap.

No wonder you've had four doctors in the past year write you off as a troublesome patient. 
« Last Edit: April 07, 2010, 09:19:13 AM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline Moffie65

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #83 on: April 07, 2010, 09:43:51 AM »
Personally, I don't give a damn if anyone starts medications, ever!   However, when you come to an HIV forum, and ask questions; I answer with my pesrsonal views, and seldom ever look up references for my opinions.  They were formed from years of watching my personal circle of friends DIE EXCRUCIATING DEALTHS FROM THIS DISEASE, and intense study of the science of HIV.  If you don't want to take meds, great, many people have made that decision, and are now dead.  Why do you think I spend my time here in the first place??  It would take an imbicile to think I do it to spread some sort of a "pro drug" campaign.  I just cannot see waiting to let your immune system be destroyed as I had to do.  You people that are critical of my opinions are wasting your time, they were arrived at over years of this disease, and they are MY opinions only.  Please, if you don't like or want to take  meds, please feel free to do so.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline buffaloboy

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #84 on: April 07, 2010, 09:51:21 AM »
Oh please, Mary -- people here urge you to be on meds because you had 85 t-cells five f*cking months ago -- dare I ask if you've had those numbers checked out again since then?  Let's just cut the crap.

No wonder you've had four doctors in the past year write you off as a troublesome patient. 


See. There you go. You're too irrational to stick to the general discussion and you resort, instead, to personal attacks.

That type of puerile behaviour means that you've now lost the argument and your credibilty is in tatters.

Offline Moffie65

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #85 on: April 07, 2010, 09:55:20 AM »
See. There you go. You're too irrational to stick to the general discussion and you resort, instead, to personal attacks.
That type of puerile behaviour means that you've now lost the argument and your credibilty is in tatters.
Hey Buff.
There is NO arguement here, just the facts of a DEADLY disease.  You are the one that wants to argue about everything about HIV.  Stop already!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Miss Philicia

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #86 on: April 07, 2010, 10:02:04 AM »

See. There you go. You're too irrational to stick to the general discussion and you resort, instead, to personal attacks.

That type of puerile behaviour means that you've now lost the argument and your credibilty is in tatters.

Providing context in a thread is not a personal attack, no matter how much you want to deflect. 
"Iíve slept with enough men to know that Iím not gay"

Offline Hellraiser

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #87 on: April 07, 2010, 10:10:48 AM »
So let's get back to the topic at hand.  Whoever the OP is is probably as confused as ever.  HIV definitely causes skin issues.  In my experience they were linked to my failing immune system.  Once the immune system was fixed they've gone away that's been the experience of multiple people here.  HAART does bring some other issues, but you're at the level now where the benefits outweigh waiting any longer to begin.

Offline buffaloboy

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #88 on: April 07, 2010, 10:18:22 AM »
Personally, I don't give a damn if anyone starts medications, ever!   However, when you come to an HIV forum, and ask questions; I answer with my pesrsonal views, and seldom ever look up references for my opinions.  They were formed from years of watching my personal circle of friends DIE EXCRUCIATING DEALTHS FROM THIS DISEASE, and intense study of the science of HIV.  If you don't want to take meds, great, many people have made that decision, and are now dead.  Why do you think I spend my time here in the first place??  It would take an imbicile to think I do it to spread some sort of a "pro drug" campaign.  I just cannot see waiting to let your immune system be destroyed as I had to do.  You people that are critical of my opinions are wasting your time, they were arrived at over years of this disease, and they are MY opinions only.  Please, if you don't like or want to take  meds, please feel free to do so.

Moffie:

Are there any posts where you don't reiterate your lengthy first hand experience of 27 years knowledge of HIV? Yes, it's important and not to be dismissed but do you need to make the point over and over?

Perhaps you're not aware of how patronising it can sound at times.....

Offline Hellraiser

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #89 on: April 07, 2010, 10:19:07 AM »
Moffie:

Are there any posts where you don't reiterate your lengthy first hand experience of 27 years knowledge of HIV? Yes, it's important and not to be dismissed but do you need to make the point over and over?

Perhaps you're not aware of how patronising it can sound at times.....


Please stop trying to cause arguments dude.

Offline buffaloboy

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #90 on: April 07, 2010, 10:21:27 AM »
Providing context in a thread is not a personal attack, no matter how much you want to deflect.  

Don't fool yourself.  One thing you are definitely NOT doing is 'providing context'.

Offline veritas

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #91 on: April 07, 2010, 10:26:01 AM »

buffaloboy,

One of the most difficult side effects to being HIV positive is inflamation. I'm sure you have read how HIV+ patients age more quickly than those who are HIV-. The more virus in your body, the more your immune system is turned on causing inflamation on a constant basis. Inflamation and aging has been discussed in a few threads. Inflamation can lead to a variety of unwanted conditions, including skin problems. Read this link which gives a pretty good overview of inflamation and the bad things it can do:

http://www.womentowomen.com/inflammation/whatischronicinflammation.aspx

Then read this link:

 http://www.ias2009.org/PAGMaterial/MOPL104_El-Sadr_1.ppt

The above shows the paradigm shift for HIV and inflamation. The longer one allows inflamation to run wild in their bodies, the more harm being done overall.


Of course starting meds is a personal decision, however, that decision should take into account all variables.
Letting hiv run wild in your body is not a good thing and inflamation is only one issue.

Starting meds seems prudent to me.

v

Offline buffaloboy

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #92 on: April 07, 2010, 10:35:32 AM »
Veritas:

Yes, I am aware of the inflammation issue, but, to date, the guidelines have not been altered to urge people starting at any CD4 level. There may well come a time when that does happen, but that day has not arrived yet.

Offline Moffie65

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #93 on: April 07, 2010, 10:36:24 AM »
Moffie:

Are there any posts where you don't reiterate your lengthy first hand experience of 27 years knowledge of HIV?
Perhaps you're not aware of how patronising it can sound at times.....

#1, Yes
#2, Don't give a shit.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline veritas

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #94 on: April 07, 2010, 10:45:37 AM »

buffaloboy,

That's certainly your decision. I hope, for your sake, that you don't wait too long before something irreversible happens. But whatever you decide ----  Good Luck!

v

Offline buffaloboy

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #95 on: April 07, 2010, 04:07:22 PM »
#1, Yes

Really? They seem rather thin on the ground. Perhaps you could do this a little more frequently.

#2, Don't give a shit.

Maybe it's time that you did.

Offline buffaloboy

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Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #96 on: April 07, 2010, 04:16:11 PM »
buffaloboy,

That's certainly your decision. I hope, for your sake, that you don't wait too long before something irreversible happens. But whatever you decide ----  Good Luck!

v

No one on this thread knows anything about my current state of my health; Miss Philcia threw that in here because he/she is incapablle of having a discussion without personalising it and resorting to cheap shots. It would be better if people here ignored him/her, until she's able to contribute something more more meaningful than her vacuous trolling.

Offline Rev. Moon

  • Member
  • Posts: 3,783
  • Smart ass faggot ©
Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #97 on: April 07, 2010, 04:18:42 PM »
#1, Yes

Really? They seem rather thin on the ground. Perhaps you could do this a little more frequently.

#2, Don't give a shit.

Maybe it's time that you did.

My gawd, you just don't give up, do ya?  Have you noticed how you are alone in this battle against the other members? At least Nestor presented an intelligent approach to his statement. You, on the other hand, sound rather ignorant, juvenile, and unnecessarily aggressive.
 
Stop it and be blessed already.  Your hijack of this thread has become tiresome and offensive.   

My apologies to the OP for the childish behaviour of this well-established member.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline veritas

  • Member
  • Posts: 1,410
Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #98 on: April 07, 2010, 04:41:57 PM »
No one on this thread knows anything about my current state of my health; Miss Philcia threw that in here because he/she is incapablle of having a discussion without personalising it and resorting to cheap shots. It would be better if people here ignored him/her, until she's able to contribute something more more meaningful than her vacuous trolling.


Buffaloboy,
Did you not post the following back in January:

"I've been hospitalised by pneumonia once for a week in 2008, and had subsequent bouts of it ever since, my last CD4 count was 84, I suffer with depression, and have been signed off from lookiing for work (I was not working at the time) until April by my doctor as he considered me to ill to work."

Either you forgot what you posted or you weren't telling the truth.

I won't respond to you anymore.

v


Offline buffaloboy

  • Member
  • Posts: 159
Re: Cells around 390. Skins problems appear. To start or not to start?
« Reply #99 on: April 07, 2010, 04:46:27 PM »
My gawd, you just don't give up, do ya?  Have you noticed how you are alone in this battle against the other members? At least Nestor presented an intelligent approach to his statement. You, on the other hand, sound rather ignorant, juvenile, and unnecessarily aggressive.
 
Stop it and be blessed already.  Your hijack of this thread has become tiresome and offensive.   

My apologies to the OP for the childish behaviour of this well-established member.

And yet you won't stand up against the personal attacks, accusations of 'denialism' and general aggression of the 'start treatment NOW' camp?

What's good for the goose aint so good for the gander, eh? Some people are more equal than others? Or, in short, downright hypocrisy.

 

 


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