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Author Topic: having thoughts of stopping meds  (Read 66355 times)

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Offline Hellraiser

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Re: having thoughts of stopping meds
« Reply #50 on: May 10, 2011, 10:59:18 am »
Then it might not be so wise to post comment, quoting me, with something that is meaningless. If you can't back it up then save your fingers.

Except that I can, I did, and there's not a damn thing you can do about it.  Well, except for the whining. 

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #51 on: May 10, 2011, 11:09:09 am »
You clearly have only one motivation and that is to have a pointless argument.

I will leave you to that and hope you don't cause a counter-productive effect on your own health.

Offline phildinftlaudy

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Re: having thoughts of stopping meds
« Reply #52 on: May 10, 2011, 11:10:12 am »
No backwards conversion no, but multiple doctors have said if there ever is a cure, it potentially may only work for the people who never allowed the virus to take a long term deeply rooted hold on their systems.
This article may assist a bit in showing the importance of keeping viral load low - through treatment - and the benefits of doing so for future treatment options - while it may not necessarily tie this to the benefits of keeping viral load suppressed as a benefit towards successful employment of a cure on an individual, I would venture to say that there would be few doctors, scientists, researchers, and others involved in treatment of HIV who would disagree that having a low or undetectable viral load would definitely be beneficially to a person whether it be for ongoing treatment and/or administration of a "cure."

Excerpt from article (with full link to article below):
When to switch?
Studies have shown that patients who switch therapy at lower rather than higher viral loads have a greater chance of subsequent successful suppression [53], and a recent study found that delay in modification of failing regimens was associated with increased mortality, especially with non-PI based regimens [1]. Furthermore, time on a failing regimen allows for the development of resistance. The guidelines discussed above all recommend changing “early” when possible, particularly for patients failing on an NNRTI-based regimen (for whom resistance may develop more quickly and multiple mutations could risk efficacy of newer available NNRTIs) [15, 16]. Thus, when failure is detected, a resistance test should be done (if possible) and therapy modified with the goal of complete viral suppression.

Source:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2946177/
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 Matt39

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Re: having thoughts of stopping meds
« Reply #53 on: May 10, 2011, 11:26:42 am »
having a low or undetectable viral load would definitely be beneficially to a person whether it be for ongoing treatment and/or administration of a "cure."

I don't see any scientific evidence or backing for that at all.

Future potential health regarding treatment interruption is not the same as potential success with a 'cure'.
The two are distinct.
For example, in the research being carried out on stem cell transplant to eradicate traces of HIV, there is no correlation between plasma viral load and success.
The underlying issue for a 'cure' for virtually *any* illness, and especially one classed as 'viral', is the actual state of health of a person when being treated with any cure. And that does not automatically correlate to plasma viral load at all, as much as it is easy to think so. Scientifically, it is far more complex and it does no good to anyone to talk in 'simple', 'easy' terms when they are not accurate.
« Last Edit: May 10, 2011, 11:28:46 am by Matt39 »

Offline phildinftlaudy

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Re: having thoughts of stopping meds
« Reply #54 on: May 10, 2011, 11:36:29 am »
I don't see any scientific evidence or backing for that at all.
Not really concerned with what you do or don't see scientific evidence - more concerned with what actual researchers, scientists, and doctors would see as evidence

The underlying issue for a 'cure' for virtually *any* illness, and especially one classed as 'viral', is the actual state of health of a person when being treated with any cure. And that does not automatically correlate to plasma viral load at all, as much as it is easy to think so.
Citation(s) for the above statement please.

Scientifically, it is far more complex and it does no good to anyone to talk in 'simple', 'easy' terms.
Would be interesting to know where you get off making a statement like that. To boldly pronounce that it does no good to anyone to talk in "simple" "easy" terms speaks of high level of arrogance on the part of a person making a statement such as that - but since you say so than I shall take it as the gospel truth - thank you oh omniscient one.
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 Hellraiser

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Re: having thoughts of stopping meds
« Reply #55 on: May 10, 2011, 11:39:17 am »
http://www.natap.org/2011/HIV/050211_01.htm

"Early treatment
 
Early treatment may be a potential strategy to reduce or even control the number of persistent latently infected cells. Several groups have demonstrated that the number of infected cells, as measured by both cell-associated HIV DNA and HIV unspliced RNA, decreases to a significantly lower level if cART is initiated during acute rather than chronic infection [55,66,85,86].
 
In a recent longitudinal study of patients who initiated cART during very early acute infection and stayed on cART for a prolonged period, in five of 32 (16%) patients following cessation of cART, HIV RNA was maintained at below 50 copies/ml for a median of 77 months off cART [85]. The use of very early cART may have had a significant impact on the number of infected cells as measured by total HIV DNA (Fig. 2) [20,85,108-110]. However, the findings from this study were in contrast to many other studies of viral rebound in nearly all patients following cessation of cART, even when initiated during acute infection [87,111,112]. The role of very early treatment initiation in limiting seeding of the HIV reservoir, as well as preserving immune responses capable of controlling HIV replication, requires further investigation."




I believe it was Galliano who said that limiting the early seeding of the reservoirs will potentially be a requirement to a cure.  This article discusses the mechanism he was talking about.

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #56 on: May 10, 2011, 11:48:15 am »
Not really concerned with what you do or don't see scientific evidence - more concerned with what actual researchers, scientists, and doctors would see as evidence

So can you provide links to that then?


As far as how successful any 'cure' for anything is, of course success depends on the state of the health of a patient. I can't believe you could cast doubts on such an obvious truth.

But again, I suspect it is the same old chesnut on this forum among a substantial number. If someone says something you don't like, you revert to being a snotty-nosed spoilt, defensive little 5 year old.

Offline Hellraiser

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Re: having thoughts of stopping meds
« Reply #57 on: May 10, 2011, 11:50:27 am »
So can you provide links to that then?


As far as how successful any 'cure' for anything is, of course success depends on the state of the health of a patient. I can't believe you could cast doubts on such an obvious truth.

But again, I suspect it is the same old chesnut on this forum among a substantial number. Say something you don't like and you revert to being a snotty-nosed spoilt, defensive little 5 year old.

^ Funny you say that.

Basically everything you say is contradictory in nature.  I have no agenda so why would I lie about having read an article which states what I have espoused?  What's your agenda?

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #58 on: May 10, 2011, 11:50:45 am »
http://www.natap.org/2011/HIV/050211_01.htm

"Early treatment
 
Early treatment may be a potential strategy to reduce or even control the number of persistent latently infected cells.

Still has zero to do with a 'cure'. And once again, HAART acts on plasma viral load and *nowhere* else. That's a medical and scientific fact.
There are no simple mechanisms to measure viral load outside of plasma because to do so requires very invasive medical procedures, and even then its accuracy is not proven.
« Last Edit: May 10, 2011, 11:56:29 am by Matt39 »

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #59 on: May 10, 2011, 11:54:14 am »
^ Funny you say that.

Basically everything you say is contradictory in nature.  I have no agenda so why would I lie about having read an article which states what I have espoused?  What's your agenda?

Who said you lied?

I asked you for a link to it. You said you couldn't be bothered to find it.

My agenda is about mature, fact-based discussion and not wasting time listening to temper tantrums from people who maybe need to get a little bit of personal insight and cut the defensive crap.
Doesn't it occur to you why such a very large number of poz people don't post here?
The answer is you and those who post like you. Who needs it?

Offline Hellraiser

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Re: having thoughts of stopping meds
« Reply #60 on: May 10, 2011, 11:55:59 am »
Still has zero to do with a 'cure'. And once again, HAART acts on plasma viral load and *nowhere* else. That's a medical and scientific fact.

http://www.nature.com/mi/journal/v1/n1/full/mi20071a.html

"These findings suggest that the virus itself has a central role in the GI tract pathology observed and that HAART can ameliorate enteropathy."



Next?

Offline phildinftlaudy

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Re: having thoughts of stopping meds
« Reply #61 on: May 10, 2011, 11:58:43 am »
So can you provide links to that then?
I did provide a link and an excerpt - you didn't accept it.

As far as how successful any 'cure' for anything is, of course success depends on the state of the health of a patient. I can't believe you could cast doubts on such an obvious truth.
I didn't cast doubts at all on this.  Asked for citation. But, I actually agree that the success rate of a cure is very much dependent on the state of health of a person.  Last time I checked, viral load levels can have a definite impact on the state of health of a person - thus, a high viral load and its impact on a person's state of health would most likely impact how successful a "cure" might be. I can't believe you could cast doubts on such an obvious truth.


But again, I suspect it is the same old chesnut on this forum among a substantial number. If someone says something you don't like, you revert to being a snotty-nosed spoilt, defensive little 5 year old.
I will let your retort speak for itself.
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 Hellraiser

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Re: having thoughts of stopping meds
« Reply #62 on: May 10, 2011, 11:59:59 am »
Who said you lied?

I asked you for a link to it. You said you couldn't be bothered to find it.

My agenda is about mature, fact-based discussion and not wasting time listening to temper tantrums from people who maybe need to get a little bit of personal insight and cut the defensive crap.
Doesn't it occur to you why such a very large number of poz people don't post here?
The answer is you and those who post like you. Who needs it?

You keep throwing out "facts" without any sort of concrete evidence to support your arguments either.  As for the forums being a bit abrasive that is only the case if you were to come here and say for example that HAART were ineffective against HIV, or other pseudo-denialist propaganda.

If you want emotional support you can get that here but it comes with a potentially unwanted dose of the truth usually.

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #63 on: May 10, 2011, 12:03:53 pm »
http://www.nature.com/mi/journal/v1/n1/full/mi20071a.html

"These findings suggest that the virus itself has a central role in the GI tract pathology observed and that HAART can ameliorate enteropathy."



Next?

Please read the article again. HAART does not suppress HIV in the gut mucosal lining and indeed measuring gut function in poz people is not in the treatment guidelines in North America or Europe.
It should be of course, because gut health is a far more accurate predictor of potential ill health trhan either CD4 counts or VL.
I spent six months hammering and arguing with my HIV Doc until I got the obstinate bugger to refer me for multiple GI Function tests - faecal calprotectin, GI permeability and absorption, and a metabloic profile of organic acids. It was pretty enlightening and lead to specifc treatment around the gut that caused my CD4s to increase significantly.

But that article still has no relevance to 'cure' because HAART has *no* action to counter poor gut function.

As for the forums being a bit abrasive that is only the case if you were to come here and say for example that HAART were ineffective against HIV, or other pseudo-denialist propaganda.

Really? Then please quote me where I have said either that HAART is ineffective against HIV, or spread denialist propaganda?
That kind of stuff sounds a bit Hitlerian to me.
Say as we say, think as we think or you're not welcome.
« Last Edit: May 10, 2011, 12:07:53 pm by Matt39 »

Offline Solo_LTSurvivor

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Re: having thoughts of stopping meds
« Reply #64 on: May 10, 2011, 12:05:19 pm »
My agenda is about mature, fact-based discussion and not wasting time listening to temper tantrums from people who maybe need to get a little bit of personal insight and cut the defensive crap.
Doesn't it occur to you why such a very large number of poz people don't post here?
The answer is you and those who post like you. Who needs it?

How ironic this is coming from someone who sent me a very nasty PM over something I recently posted on another thread because you were forbidden to post on that forum in order to get the last word in.  

You say you're not looking to fan any flames, yet you deliberately appear to seek to start arguments. Before you offer your thoughts as to why many people don't post here, you need to remember that you are part of that so-called defensiveness and other off putting activities people see when they read some of these threads.

edited to add: apologies to Jake for participating in this unnecessary hijacking
« Last Edit: May 10, 2011, 12:08:06 pm by Solo_LTSurvivor »
don't equate intelligence with lack of masculinity
Jim Phelps, Mission Impossible
____________________________

Seroconverted: Early 80s
Tested & confirmed what I already knew: early 90s

Current regimen: Biktarvy. 
Last regimen:  Atripla (with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky ::))
Past regimens
Fun stuff (in the past):  HAV/HBV, crypto, shingles, AIDS, PCP

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Oct. 2012: 920/23%

Still UD after all these years

Offline newt

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Re: having thoughts of stopping meds
« Reply #65 on: May 10, 2011, 12:06:25 pm »
Would people kindly stay on-topic or start their own threads

thanks

- matt
"The object is to be a well patient, not a good patient"

Offline drewm

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Re: having thoughts of stopping meds
« Reply #66 on: May 10, 2011, 12:08:41 pm »
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX -  FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #67 on: May 10, 2011, 12:09:55 pm »
How ironic this is coming from someone who sent me a very nasty PM over something I recently posted on another thread because you were forbidden to post on that forum in order to get the last word in.  

You say you're not looking to fan any flames, yet you deliberately appear to seek to start arguments. Before you offer your thoughts as to why many people don't post here, you need to remember that you are part of that so-called defensiveness and other off putting activities people see when they read some of these threads.

edited to add: apologies to Jake for participating in this unnecessary hijacking

I sent you a PM because, in another thread of someone considering have a treatment break, you suggested I was probably dissident/denialist.

What did you expect?

I have no respect for your kind of stalinist, orwelian 'truth speak' - you make Goebbels look like a kid at a tea party.
« Last Edit: May 10, 2011, 12:12:19 pm by Matt39 »

Offline Matty the Damned

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Re: having thoughts of stopping meds
« Reply #68 on: May 10, 2011, 12:10:48 pm »
I sent you a PM because, in another thread of someone considering have a treatment break, you suggested I was a probably denialist.

What did you expect?

I have no respect for your kind of stalinist, orwelian 'truth speak' - you make Goering look like a kid at a tea party.

D00d!

MtD

Offline Hellraiser

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Re: having thoughts of stopping meds
« Reply #69 on: May 10, 2011, 12:11:35 pm »
I sent you a PM because, in another thread of someone considering have a treatment break, you suggested I was a probably denialist.

What did you expect?

I have no respect for your kind of stalinist, orwelian 'truth speak' - you make Goering look like a kid at a tea party.

We just Godwin'd woot!

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #70 on: May 10, 2011, 12:14:01 pm »
The 'aidsmeds forum' attack dogs!

You really can't see how sad and fucked up you appear can you? ::)

Offline Matty the Damned

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Re: having thoughts of stopping meds
« Reply #71 on: May 10, 2011, 12:15:46 pm »
The 'aidsmeds forum' attack dogs!

You really can't see how sad and fucked up you appear can you? ::)

Duzzent matter, doll. You Godwinned.

</thread>

MtD
(Who hates to agree with Hecky but there ya go)

Offline denb45

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Re: having thoughts of stopping meds
« Reply #72 on: May 10, 2011, 12:18:46 pm »


Drewm, great pic of the cats, my 2 boys do this all the time, and then they kiss and make-up with each other  :D only to do it all over again, guess they been watching me & Bob for too many yrs. they have to have got  THIS somewhere  :D :D :D were both Double Scorpio men the same age what can I say  ;D
« Last Edit: May 10, 2011, 12:22:08 pm by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #73 on: May 10, 2011, 12:19:20 pm »
Duzzent matter, doll. You Godwinned.

</thread>

MtD
(Who hates to agree with Hecky but there ya go)

 ;D whatever makes you happy.

Offline Ann

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Re: having thoughts of stopping meds
« Reply #74 on: May 10, 2011, 12:39:21 pm »
you revert to being a snotty-nosed spoilt, defensive little 5 year old.

Matt, you claim you want a mature, fact-based discussion, yet you resort to childish name-calling. This is a personal attack and we do not permit attacks of this nature on these forums.

Consider yourself warned.

Ann
Condoms are a girl's best friend

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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 denb45

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Re: having thoughts of stopping meds
« Reply #75 on: May 10, 2011, 12:46:41 pm »
 Getting back on Topic here   @ Poz jeep guy, how long have you been on the andro-gel? 200 testosterone level is low, it should be way up in the 900s to 1600s for a normal high?  also  you must give your self some time with that, if that doesn't work you might wanna tlak to your doctor about getting the IM-inject-able testosterone called (CYPIONATE) inject-able USP, that works way better than andro-gel, ask your doctor about this  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #76 on: May 10, 2011, 12:51:30 pm »
Matt, you claim you want a mature, fact-based discussion, yet you resort to childish name-calling. This is a personal attack and we do not permit attacks of this nature on these forums.

Consider yourself warned.

Ann

Another piece of orwellian 'truth speak'. I have been the one attacked consistently.
You are clearly very selective about what you let your eyes see.
But then I don't expect anything else from you Ann, even if I hadn't witnessed it myself your reputation precedes it very widely.

Offline Matty the Damned

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Re: having thoughts of stopping meds
« Reply #77 on: May 10, 2011, 12:53:51 pm »
Another piece of orwellian 'truth speak'. I have been the one attacked consistently.
You are clearly very selective about what you let your eyes see.
But then I don't expect anything else from you Ann, even if I hadn't witnessed it myself your reputation precedes it very widely.

Double plus butt hurt quick wise.

MtD

Offline Rev. Moon

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Re: having thoughts of stopping meds
« Reply #78 on: May 10, 2011, 12:56:53 pm »
Another piece of orwellian 'truth speak'. I have been the one attacked consistently.
You are clearly very selective about what you let your eyes see.
But then I don't expect anything else from you Ann, even if I hadn't witnessed it myself your reputation precedes it very widely.


For someone who is constantly throwing pseudo-intellectual comments accusing the mods and other members of communism, elitism, lack of original thought, and other stupidities you are not very clever, are ya?   This is not the first time that you have attacked an admin.  If you don't like this place and its members why dont you just go away.  Trust me, we are better off without the likes of you.

Hugs and kisses  :-*
"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 David Evans

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Re: having thoughts of stopping meds
« Reply #79 on: May 10, 2011, 12:57:16 pm »
I'm seconding Ann's request for you (Matt39) to settle down and cool off. It's one thing to offer your own experience and knowledge and quite another to hijack a thread to promote your own philosophy and attack other members in the process.

I'd also like to ask that you do a little more homework. Actually, antiretroviral drugs do achieve intracellular concentrations in cells in the gut and in macrophages in the brain and testes. The compartments are different, and protected, but ARVs do get there. They also are able to reduce HIV levels in those places, and it's not just because of spill-over effects from plasma. One of the pieces of evidence for this is the restoration (though very slow) of gut lymph tissue in people taking long-term suppressive ARVs.

Lastly, in my cure-related activism work I have been able to directly ask some of the world's top virologists in whom HIV eradication strategies are most likely to work and their answers are nearly universally the same - either people who are caught in the first few weeks or months after infection or those who started ARVs at that time - and the reason for that is to halt the destruction of the gut lymphoid architecture and to minimize the establishment of latent reservoirs. I offer this last piece as a grain of salt, as it is still theoretical, but folks like Fauci and Bruce Walker have said as much in editorials they've published about the possibility of a cure.

I bring this last point up because the original poster is faced with exactly this choice: stop therapy and potentially do harm to his gut lymphoid architecture and enlarge the pool of latent virus, knowing all the while that the thinking here is strong, and supported by some evidence, but still somewhat theoretical --- or to take a break from the meds until his CD4s cross what the DHHS guidelines panel has deemed the danger zone (below 500).

That's a really, really difficult decision to make and one that deserves our respect and support and that isn't helped by either misinformation or personal attacks.

David
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Offline Matt39

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Re: having thoughts of stopping meds
« Reply #80 on: May 10, 2011, 12:58:35 pm »
Here is another piece of evidence that points very clearly to state of health at time of diagnosis being a far greater determinant of potential future ill-health and death, that is relevant to this thread:
A third of deaths in patients with HIV are attributable to other serious illness present at time of HIV diagnosis:
http://www.aidsmap.com/A-third-of-deaths-in-patients-with-HIV-are-attributable-to-other-serious-illness-present-at-time-of-HIV-diagnosis/page/1779124
3 May 2001
That kind of evidence is crucial to anyone considering a treatment interruption.

Offline Miss Philicia

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Re: having thoughts of stopping meds
« Reply #81 on: May 10, 2011, 01:00:53 pm »
They have absolutely no effect on HIV anywhere else in the body - in the Gut Mucosal Lining

WRONG
"I’ve slept with enough men to know that I’m not gay"

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #82 on: May 10, 2011, 01:02:01 pm »
I'm seconding Ann's request for you (Matt39) to settle down and cool off. It's one thing to offer your own experience and knowledge and quite another to hijack a thread to promote your own philosophy and attack other members in the process.

I request you read the posts again. I queried a post by someone else that was inaccurate and misleading. When I asked for some evidence, they replied that they could not be bothered. I did not promote any philosophy.

Offline Matty the Damned

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Re: having thoughts of stopping meds
« Reply #83 on: May 10, 2011, 01:02:40 pm »
Here is another piece of evidence that points very clearly to state of health at time of diagnosis being a far greater determinant of potential future ill-health and death, that is relevant to this thread:
A third of deaths in patients with HIV are attributable to other serious illness present at time of HIV diagnosis:
http://www.aidsmap.com/A-third-of-deaths-in-patients-with-HIV-are-attributable-to-other-serious-illness-present-at-time-of-HIV-diagnosis/page/1779124
3 May 2001
That kind of evidence is crucial to anyone considering a treatment interruption.

Burn straw man, burn. ::)

MtD

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #84 on: May 10, 2011, 01:03:46 pm »
WRONG

Fine. When 'plasma' is re-defined as meaning 'gut mucosal lining', 'lymph nodes' and reservoirs elsehwere in the human body I hope you let me know.

Offline Ann

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Re: having thoughts of stopping meds
« Reply #85 on: May 10, 2011, 01:07:33 pm »
I request you read the posts again. I queried a post by someone else that was inaccurate and misleading. When I asked for some evidence, they replied that they could not be bothered. I did not promote any philosophy.

But that person didn't resort to personal attacks. YOU did.

Keep it up and you'll be given a time out. This is your last warning.

This hijack ENDS HERE, ENDS NOW.

Ann
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 CaptCarl

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Re: having thoughts of stopping meds
« Reply #86 on: May 10, 2011, 01:13:46 pm »
Doesn't it occur to you why such a very large number of poz people don't post here?

Or it could be, maybe, that they're scared off by overbearing pompous douchebags. Or sommat like that...

CaptCarl
The only thing I can do straight is shoot..

Offline drewm

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Re: having thoughts of stopping meds
« Reply #87 on: May 10, 2011, 01:15:44 pm »
Or it could be, maybe, that they're scared off by overbearing pompous douchebags. Or sommat like that...

CaptCarl


Well said CaptCarl...

Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX -  FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #88 on: May 10, 2011, 01:15:55 pm »
Lastly, in my cure-related activism work I have been able to directly ask some of the world's top virologists in whom HIV eradication strategies are most likely to work and their answers are nearly universally the same - either people who are caught in the first few weeks or months after infection or those who started ARVs at that time - and the reason for that is to halt the destruction of the gut lymphoid architecture and to minimize the establishment of latent reservoirs. I offer this last piece as a grain of salt, as it is still theoretical, but folks like Fauci and Bruce Walker have said as much in editorials they've published about the possibility of a cure.

David

I appreciate your view on HIV and the GUT, and I do not dispute conversations you have had.
However, directly related to my *own* health, I have read *every single* piece of research published on 'HIV and the Gut', from within research directly concerning HIV, *and* virtually every piece of research concerning Gut Health.
I have had literally hours of discussions concerning my own gut function, gut health in general, and HIV and the gut specifically with both my own UK HIV Consultant, his head of department, and two of the most senior Gastroenterologists in the UK. There is no clear scientific or medical evidence to show that damage found post diagnosis is definitely caused by the initial infection or if it preceded it, and no way of knowing the degree of any poor gut function that is attributable to HIV.
The reason for that is because Gut Function monitoring is *still* not a part of treatement guidelines.
There is enormous anecdotal evidence that poz people who share various diet and lifestyle co-factors prior to infection/diagnosis almost definitely have asymptomatic gut function disorder, known as intestinal dysbiosis, and that it is very common among a large section of poz people because of lifestyle factors.

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #89 on: May 10, 2011, 01:19:34 pm »
But that person didn't resort to personal attacks

Do I need to get back to SpecSavers then?
I probably have left it a tad more than a year sincde I had my eyes tested, but thanks for that Ann, I didn't realise quite how poorly-sighted I had become.
I appreciate that. :)

Offline Ann

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Re: having thoughts of stopping meds
« Reply #90 on: May 10, 2011, 01:33:41 pm »
Do I need to get back to SpecSavers then?
I probably have left it a tad more than a year sincde I had my eyes tested, but thanks for that Ann, I didn't realise quite how poorly-sighted I had become.
I appreciate that. :)

Nowhere did Hellraiser attack you or call you names.

You perhaps are the one who needs Spec-Savers - he also did not accuse you of posting denialist propaganda.


As for the forums being a bit abrasive that is only the case if you were to come here and say for example that HAART were ineffective against HIV, or other pseudo-denialist propaganda.



Really? Then please quote me where I have said either that HAART is ineffective against HIV, or spread denialist propaganda?
That kind of stuff sounds a bit Hitlerian to me.
Say as we say, think as we think or you're not welcome.


As you have seen fit to continue this hijack despite two moderators asking you not to, I'm giving you that time out I warned you about. Your time out will last for seven days Do not attempt to create a new account to get around your time out because if you do, you will be permanently banned.

Ann
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 drewm

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Re: having thoughts of stopping meds
« Reply #91 on: May 10, 2011, 01:35:08 pm »


Personally speaking, I am not in any position to consider stopping and restarting meds or anything of the such, however, I read these threads with tremendous interest because usually there is something I can take home from the discussion that leads to more questions or a renewed interest in another topic.

It would be nice (in a perfect world) if everyone could state their opinions, back up statements with facts (links) and let the chips fall where they may. No one's mind is going to be changed by back-biting, bitter feuds on here, they just aren't.

It also dawns on me, that unless I am missing something, no one on here is a doctor or researcher, per se, relaying what they know. We are usually reading second and third hand accounts of what someone said somewhere about something. I like reading about the different research and can appreciate the strong emotion attached to this bug but these ad nauseum rants really need to stop.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX -  FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline buginme2

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Re: having thoughts of stopping meds
« Reply #92 on: May 10, 2011, 01:59:59 pm »
Good point drew! This topic obviously has a lot of emotion attached to it.  Jake sorry your thread got hijaked.  Talk this over with your doc.  Maybe a change of meds would solve the nausia issues. I'm on Atripla and have had no nausia. 
Don't be fancy, just get dancey

Offline Rev. Moon

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Re: having thoughts of stopping meds
« Reply #93 on: May 10, 2011, 02:14:01 pm »
Maybe a change of meds would solve the nausia issues. I'm on Atripla and have had no nausia.  


In the end Jake will need to be really honest with himself as to why he is having these thoughts about the meds.  If it is that the side effects are so severe that he feels like he is no longer himself then he should address the possibility of changing his current regimen. If it is that he feels as though taking these pills is a constant reminder of the fact that he is poz (and I'm afraid that this is the bottom line based on his OP) then it is a psychological matter and we have a different issue to deal with here.  Perhaps coming to terms with some facts will be more useful than simply going off meds.
"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 wolfter

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Re: having thoughts of stopping meds
« Reply #94 on: May 10, 2011, 02:23:14 pm »
I hope the OP found these responses informative.
Being honest is not wronging others, continuing the dishonesty is.

Offline denb45

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Re: having thoughts of stopping meds
« Reply #95 on: May 10, 2011, 02:25:01 pm »
Well my general consensus for Jake aka= Poz Jeep Guy, would definitively be to speak with his doctor about all of this, I think it may clear up a lot of this confusion as to why he's having thoughts of stopping meds, any combo of meds can be changed or tweaked for the better  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline phildinftlaudy

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Re: having thoughts of stopping meds
« Reply #96 on: May 10, 2011, 02:32:51 pm »
Well my general consensus for Jake aka= Poz Jeep Guy, would definitively be to speak with his doctor about all of this, I think it may clear up a lot of this confusion as to why he's having thoughts of stopping meds, any combo of meds can be changed or tweaked for the better  ;)
I agree Dennis -
it is definitely one of those decisions that a person should make after discussions with their doctor, in consultation with others with experience, a review and understanding of the research, etc.  Ultimately, it is decision that each person has to make for him/herself. 

I started meds early on - with a low viral load and cd4 that had only once dipped below 500.  Are there times I have regretted starting meds?  A couple.  But, I have also heard of more cases of people having difficulty getting their cd4s up after delaying meds then I have of people's cd4s going to optimal levels after delaying the start of meds.  But, of course, this is only what I have heard - and my experience, in the whole scheme of things is limited.  I had a partner who did not go on meds until his cd4s were single digit and he ended up hospitalized near death - now, 15 years later his cd4 are almost double mine.

While it is good to get feedback on these forums - decisions about whether to go on meds or not or to stop taking meds should definitely rely on discussions with a doctor(s) - and discussions that focus on the physical, mental, social, and any other factors that can or may influence ones decision.
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 drewm

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Re: having thoughts of stopping meds
« Reply #97 on: May 10, 2011, 02:36:22 pm »
"While it is good to get feedback on these forums - decisions about whether to go on meds or not or to stop taking meds should definitely rely on discussions with a doctor(s) - and discussions that focus on the physical, mental, social, and any other factors that can or may influence ones decision."

The best piece of advice I have read yet. While these opinions can help to guide a decision, medical advice is absolutely essential before the final decision is made.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX -  FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline David_CA

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Re: having thoughts of stopping meds
« Reply #98 on: May 10, 2011, 02:39:22 pm »
Perhaps the stopping of meds won't be such an issue if the OP realizes / acknowledges that it will, most likely, only be a temporary stay.  Most of us aren't LTSP's or LTNP's.  If he  stops meds, he needs to understand that he'll probably have to restart them at some point.  To me, it might be easier to stay on the current course than to resign myself that 'HIV has won once again' when I had to restart meds.  Of course, I'm not the OP with the issues that meds might be causing.
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline Raf

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Re: having thoughts of stopping meds
« Reply #99 on: May 10, 2011, 05:04:24 pm »
I cannot contribute too much to the subject, since I didn't had an option regarding meds, I had to take them or I would have died back in 2008 (I doubt that I made to 2009 if the aids keep progressing in me), but I kinda agree with denb45, OP, are you and your doctor totally convinced that the meds are affecting your testosterone levels? or may be something else? you could start a testosterone therapy...if I were in your position the last thing I would stop are the meds. Sooner or later you'll have to return to them, and believe me, the OI in the aids stage are not pretty.
Dx: 05/14/2008
Latest HIV Meds combo I've been taking:

Kaletra + Combivir (since 05/16/2008 - 05/09/2019)
Acriptega (05/10/2019 - today)

 


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