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Author Topic: please advice...  (Read 5085 times)

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Offline mara_99

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  • Posts: 19
please advice...
« on: June 16, 2011, 12:00:00 PM »
Hi everyone,

I discovered this forum a few months ago (I too am HIV positive) and since that I read your posts daily.
Todat I have been reading posts in this section, about people that you loved and had died. I am still trying to figure out - what was (generally speaking) the main cause of death for them, or for most part? Was it AIDS related or was it because they did not take ARV?
Also, I have seen that people die of AIDS with very good numbers (high CD4 and low CD4). How can this happen? This is actually conflicting the HIV theory...Please help me with an answer (especially for the first part). Ireally need your support on this, as it's troubling me... :(

Best regards,
Mariah

Offline buginme2

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Re: please advice...
« Reply #1 on: June 16, 2011, 02:41:01 PM »
I read recently that HIV/AIDS still causes about 14,000 deaths per year in the U.S.  HIV is such a complicated disease I don't think its possible to say it was because of any specific reason such as not responding to arv's or not taking arv's.  There are a lot of other diseases that are common with those who have HIV such as liver, kidney, and heart disease.  I think its impossible to say why an entire group of people have died except to say that there is still no cure for HIV and people can still die from it.

Offline newt

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Re: please advice...
« Reply #2 on: June 16, 2011, 08:33:02 PM »
It is important to note that not all people with HIV die of HIV-related disease, but they are still cherished and worth remembering.

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

Offline Miss Philicia

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Re: please advice...
« Reply #3 on: June 17, 2011, 11:34:31 AM »
Newt is spot on, and sometimes I'm not sure (personally) how to even define "HIV-related disease" these days.  As an example, I've had three friends pass away in the past 6 months. They were all long term survivors. One had spiraled into drug abuse caused by untreated long term depression and overdosed. The overdose seemed on purpose so I would define it as a suicide, and the depression was undoubtedly HIV-related. Another friend, aside from HIV infection, also had long term Crohn's disease so that's like having two inflammatory/autoimmune conditions on top of each other. From what I can read the relationship, or how they operate together if you have both, of these two diseases isn't fully understood.  Neither of these people were experiencing treatment failure with ARVs.

The third person (though I'm not totally clear on it) had some form of ALS which progressively got worse. This is a neurodegenerative condition, and from what I understand the casual relationship with HIV infection isn't clear. However, what is clear to me is that in the two cases here that didn't involve suicide, the people were not old -- both in their late 40's. To me it doesn't take a rocket scientist to either see a link, or that long term infection can complicate treatment when something else is laid on top of it, or that something like this can occur at a much younger age than usual. Though you should keep in mind that as long term survivors their bodies had most likely seen longer periods of un-suppressed viral loads and inflammation than a currently diagnosed patient going quickly on ARVs would see.
"Iíve slept with enough men to know that Iím not gay"

Offline mecch

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Re: please advice...
« Reply #4 on: June 17, 2011, 04:49:51 PM »
Todat I have been reading posts in this section, about people that you loved and had died. I am still trying to figure out - what was (generally speaking) the main cause of death for them, or for most part? Was it AIDS related or was it because they did not take ARV?
Mariah
People can post a memorial for anyone HIV+ who died or whatever cause.  There are memorials for people dying over 25 years or more, of this epidemic.  Some people died of AIDS, before there was treatment. Some people died of AIDS who had treatment. Some people never took treatment. Some from other diseases.  And so on and so on.  
You won't be able to summarize the cause of death into something neat, and I'm not sure what "theory of HIV" you are referring to.  
Its a complicated disease, as others have explained.  
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline CaptCarl

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Re: please advice...
« Reply #5 on: June 17, 2011, 05:06:17 PM »
Take my case for example. I will be positive for 23 years this August, the same month that I turn 46. My numbers are great, CD4's in the low 400 range, and an UD viral load. This doesn't take into account that I have liver/lung cancer, which stand a really good chance of doing me in. So how will my death be classified?

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

Offline mara_99

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Re: please advice...
« Reply #6 on: June 18, 2011, 01:27:00 PM »
Hi, and thank you for the replys.
By "theory of HIV " I am reffering to the wide accepted theory that HIV causes AIDS.
Bottome line is that I am trying to be as objective as possible and figure out: do most HIV positive people die while taking ARV or while not taking it? What do you all think/know ?


People can post a memorial for anyone HIV+ who died or whatever cause.  There are memorials for people dying over 25 years or more, of this epidemic.  Some people died of AIDS, before there was treatment. Some people died of AIDS who had treatment. Some people never took treatment. Some from other diseases.  And so on and so on.  
You won't be able to summarize the cause of death into something neat, and I'm not sure what "theory of HIV" you are referring to.  
Its a complicated disease, as others have explained.  

Offline Billy B

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Re: please advice...
« Reply #7 on: June 18, 2011, 01:55:18 PM »


Mara- It used to be that back in the day nearly everyone if not everyone died from AIDS. Odds are better now for survival. At 56 years old I suspect that something else will kill me beside AIDS. I have lost a lot of friends lately and none of them were +.
Peace,
Billy

[/quote]
VL 4420 CD4 340 CD4% 24   3/15/10 Started I&T
VL  UD   CD4 340 CD4% 26.5 05/13/10
VL  UD   CD4 360 CD4% 27.1 08/3/10
VL  UD   CD4 310 CD4% 28.4 11/22/10
VL  UD   CD4 420 CD4% 27.9 02/11/11
VL  UD   CD4 370 CD4% 26.4 06/08/11
VL  UD   CD4 360 CD4% 27.7 09/23/11
VL  UD   CD4 370 CD4% 28.3 01/20/12
VL  UD   CD4 430 CD4% 28.8 05/11/12
VL  UD   CD4 370 CD4% 28.1 09/07/12
VL  UD   CD4 390 CD4% 32.3 03/14/13

Offline aztecan

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Re: please advice...
« Reply #8 on: June 18, 2011, 02:28:11 PM »
Hi, and thank you for the replys.
By "theory of HIV " I am reffering to the wide accepted theory that HIV causes AIDS.
Bottome line is that I am trying to be as objective as possible and figure out: do most HIV positive people die while taking ARV or while not taking it? What do you all think/know ?

HIV causing AIDS is no theory. It is a scientific fact. There is no question regarding that.

With the exception of the very few who are elite non-progressors, HIV will progress to AIDS and will result in death if it is left untreated.

This is not debatable. It is a fact that has been demonstrated millions of times, even among those on the fringe who choose not to believe it.

Because I have been positive for more than 25 years, I saw the early days when treatment wasn't available. I can assure you you don't want to die that way.

ARV therapy allows those of us living with the virus a better quality of life and a longer life. It is not a panacea, but it is light years ahead of where we once were.

HUGS,

Mark

« Last Edit: June 18, 2011, 02:31:24 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline mara_99

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Re: please advice...
« Reply #9 on: June 18, 2011, 03:05:47 PM »
I am not a denialist; however I have my doubts, I think that is normal.
« Last Edit: June 18, 2011, 05:11:18 PM by Andy Velez »

Offline Assurbanipal

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Re: please advice...
« Reply #10 on: June 18, 2011, 03:32:08 PM »

Have you seen this documentary:...?

Have you seen this graph?   http://www.cdc.gov/hiv/topics/surveillance/resources/slides/trends/slides/trends3.pdf

or this one?
http://www.cdc.gov/hiv/topics/surveillance/resources/slides/trends/slides/trends2.pdf

It is no coincidence that the number of people who die dropped dramatically right after medicines were introduced to control HIV viral load.  Even while the number of people living with AIDS continues to rise.
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline LM

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  • Posts: 409
Re: please advice...
« Reply #11 on: June 18, 2011, 04:05:04 PM »
Take my case for example. I will be positive for 23 years this August, the same month that I turn 46. My numbers are great, CD4's in the low 400 range, and an UD viral load. This doesn't take into account that I have liver/lung cancer, which stand a really good chance of doing me in. So how will my death be classified?

CaptCarl

Capt, forgive me for asking, but what do you think, was the cancer due to long term effects of HIV?

Offline Miss Philicia

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Re: please advice...
« Reply #12 on: June 18, 2011, 04:52:25 PM »
I am not a denialist; however I have my doubts, I think that is normal.

No, I don't agree that this is "normal" at all. Sorry.
"Iíve slept with enough men to know that Iím not gay"

Offline Andy Velez

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Re: please advice...
« Reply #13 on: June 18, 2011, 05:13:50 PM »
Mara, I have read through all of your entries including the one in which you attached a link to denialist information.

I am going to allow that you are exploring here in good faith and sorting things out for yourself. However we do not allow links or the promotion of any denialist "information." You don't have to consider that response to be "normal" or "fair," but that's how it is here.

Don't do it again or it will get you banned from the site. Thanks for your cooperation.
Andy Velez

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: please advice...
« Reply #14 on: June 18, 2011, 05:27:14 PM »
Mara, please have a read through this website: http://www.aidstruth.org/

Denialists (they call themselves dissidents) are very dangerous people and many, many people have died unnecessary deaths because of them. Untreated hiv WILL lead to death.
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: please advice...
« Reply #15 on: June 18, 2011, 05:54:44 PM »
HIV causes AIDS. This is not debatable. Left untreated, AIDS kills. Period. Denialists use shady and unproven theories to further their selfish and deadly cause. A healthy dose of skepticism this is NOT.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


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

Offline le_liseur

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Re: please advice...
« Reply #16 on: June 18, 2011, 06:18:21 PM »
I discovered this forum a few months ago (I too am HIV positive) and since that I read your posts daily.
[...]
This is actually conflicting the HIV theory...

I'm pretty sure that, like me who have been consulting this forum for months already, but have just started to post messages a short while ago, you know you're not allowed to post denialist links or "doubts" on here. I do not see in any way how this subject - people still dying while on ARVs - affects the proven link between HIV and AIDS. People die, and so can do people on ARVS. Because of unrelated things (other illness, accidents, who knows what?) or because of HIV-relation things. We're all individuals with different bodies, different health conditions and different reactions, and different histories.

Take care of yourself, of your body and of your mental health, eat well, do exercices, please yourself with what you like, get rid of the negative and useless things and stress, and take your meds when you will have to.



Offline Ann

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    • Num is sum qui mentiar tibi?
Re: please advice...
« Reply #17 on: June 18, 2011, 06:45:44 PM »
Denialists use shady and unproven theories to further their selfish and deadly cause.

Not to mention totally debunked theories and cherry-picked sections of studies dating from the 1980s and early 90s. Again - http://www.aidstruth.org/

Bears repeating....

http://www.aidstruth.org/

http://www.aidstruth.org/

http://www.aidstruth.org/

Please also read Denying AIDS and other oddities blogspot.

Also worth a look - Reckless Endangerment blogspot.

Hiv denialism KILLS!!!

It killed one of our forum members earlier this year - read Etay's (aka Emery Taylor) tragically sad and preventable story. Read it and weep, and rage at the denialists who hoodwinked him into believing their lies and distortions of truth. If it weren't for the influences of the denialists, Etay would probably still be alive today.
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 Ann

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Re: please advice...
« Reply #18 on: June 18, 2011, 07:44:13 PM »
There was the death of another denialist earlier this year; she was a high-profile poster child of denialism. Karri Stokely was a mother of two who had been diagnosed in 1996 and doing well on meds until her husband happened upon some denialist information on the internet in 2007. She immediately quit her meds in April 2007 and died four years later (April 2011) leaving behind two children, a husband and what appears to be a large family and group of friends.

Her cousin wrote a blog on April 12th, 2011 about her impending death  and about the aftermath of his previous blog ironically, as it turned out, on the very day she finally died. (April 26th, 2011)

Two teen-age children are left motherless due to the denialists and Kerri's willing acceptance of their lies. To make matters worse, she was a "poster child" who helped spread the denialist lie to other gullible people and goodness only knows how many of them are also dead after embracing their/her lies.

Mariah, you want a child and if you do get pregnant, I suggest you not only go on meds before conception because of your high viral load, but also stay on them after the birth as well.

Otherwise, while you may spare your child from becoming hiv positive, YOU will STILL be hiv positive and if you want to be around to help your child grow to an adult, they only way that is going to be possible - with numbers like yours - is to start on ARVs and STAY on ARVs.

If you're not willing to take the life saving meds, forget about having a baby. It's just not fair on that child to do otherwise.

The medications used to control hiv infection do not kill (not today's meds, except in very rare, unusual exceptions). If the first combo you try does not suit you, there are many others you can try and it is rare for anyone to not be able to find a combo that is tolerable or even side-effect free.

Untreated hiv infection WILL kill, without exception, unless you happen to belong to the small group of Long Term Non-Progressors or Elite Controllers. With the numbers you have, you do not fall into either category.

For those of you who are unaware of Mariah's numbers, they are VL 400.000, CD4 250 and she tested poz about eight years ago. She posted the numbers and a brief history in the Women's Forum. While anyone may read the thread in Woman's, men, please be aware that you may NOT respond in that forum. Please discuss or ask questions in this thread, not the Women's Forum.

Many here can understand your wariness over side-effects, but most of the time their worries turn out to be unfounded. The people who have had problems have either worked out ways to alleviate them, or have changed combos with great success. This is 2011, not 1991, and the meds have come a LONG way since then.

What we cannot understand is that you think hiv is still a theory, when it has been scientific fact for many, many years now. Please stay away from the denialists! Are you aware that many of the more vocal denialists do not even have hiv themselves? I suspect that many of the hiv negative denialists are sadists at heart.

Hiv and hiv denialism KILL PEOPLE. Hiv meds SAVE LIVES.

It's your decision though, but I hope that if you do decide to bring a child into the world, that you decide on the side of meds = life, not denialism = death. It's as stark, dark, and simple as that.

It's one thing to kill yourself by allowing yourself to be hit by the bus of denialism, but another thing totally to bring a child into the world to possibly be hiv positive itself, or even to be born negative but lose their mother at a young age to what now is a very preventable death.

Please do not become another Karri Stokely! Don't let yourself be another denialist death statistic. Choose life, choose meds, before it's too late for you like it was for Karri and Etay.
« Last Edit: June 18, 2011, 07:48:59 PM by 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 mara_99

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  • Posts: 19
Re: please advice...
« Reply #19 on: June 19, 2011, 06:16:58 AM »
Hi,
First of all thanks for the replys. As I said before, I am NOT a denialist and I don't think I ever suggested I would be willing to have a child without taking ARV (I am just worried abot the effect it may have on the baby, on short and long term, as it is a known fact that this medication is very powerful).
Sorry for the link, I didn't know the rules on this and I will not post links like that in the future. I was not trying to convince anyone of anything; at the same time - generally speaking - I think it is important to be aware of all sides of the story, before important decisions.
I am scheduled for an appointment with my doctor on Tuesday, I will probably start ARV, but before that I feel like I owe it to myself to get all the information I can on this. I am sure that many of you have felt like this before starting ARV; am I wrong?
Thanks again, M.

Offline Assurbanipal

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Re: please advice...
« Reply #20 on: June 19, 2011, 08:26:55 AM »
... I think it is important to be aware of all sides of the story, before important decisions.
....

Only the sides that have credible information.  There will be hundreds of people out there advocating wild-eyed theories on any issue where you need to make a decision.

That is where a scientific approach is helpful -- one that tests each hypothesis against the facts.  A scientific hypothesis is one which has a way to be proved false by facts -- otherwise it is just dogma. (In scientific jargon -- science is conducted by constructing "falsifiable" hypotheses)

The "alternate" theory sites you have been looking at are very resistant to accepting a fact that would invalidate their theories.  They close their eyes to inconvenient facts.  That is the sign of a charlatan, not a scientist.



...  I am sure that many of you have felt like this before starting ARV; am I wrong?


For me.  I saw ARV's as a way to avoid dying, and before I started them it was a near term likelihood.
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: please advice...
« Reply #21 on: June 19, 2011, 08:43:09 AM »
Mariah, I'm glad to hear that you are not a denialist - it was unclear after some of the things you've written.

It's good to know you want to become more informed, but trust us when we tell you that the denialist "side of the story" is nothing more than fairy tails and outright lies. They can be very seductive fairy tales, particularly for someone who is wary of the meds. They are dangerous people and I cannot stress that enough.

I hope you read through the pregnancy treatment links I gave you in your thread in the Women's forum before you go to your doctor appointment. The information provided in those links will tell you what you need to know about the safety of the meds in relation to the baby. One of the hiv and pregnancy information packs is available in Romanian, which you may find helpful.

There have been hundreds of thousands of women who have given birth to healthy, hiv negative children thanks to the meds. You can do it too.

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 Raf

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Re: please advice...
« Reply #22 on: June 19, 2011, 05:18:18 PM »
I am scheduled for an appointment with my doctor on Tuesday, I will probably start ARV, but before that I feel like I owe it to myself to get all the information I can on this. I am sure that many of you have felt like this before starting ARV; am I wrong?

In my case, I didn't need to have all the info, back in 2008 I was in the aids stage with a nice mix of wasting syndrome and molluscus contagious...so it was down to the choice: Take ARVs, or directly die of aids. The ARVs saved my life, and keep me alive to this day.

These denialist's theories drives me mad, they say almost like I imagined everything that happened to me. I'm not interested on hear anything of "Their" side of the story, I just want to keep myself alive, that's all.
Dx: 05/14/2008
Latest HIV Meds combo I've been taking:

Kaletra + Combivir (since 05/16/2008 - today)

Offline Theyer

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Re: please advice...
« Reply #23 on: June 19, 2011, 05:49:13 PM »
I would just like to repeat what I said to a now dead infamous HIV denialist in London

Your views and how you spread them make you a murderer in my  book.

I cannot forgive his passive aggressive paranoid views and how he sought out weak people to evangelize to.

t

PS he died off a heart attack, it was said and that may be true, he also weighed next to nothing and had been in Hos for a long time due to being so weak he was unable to care for his self .
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Matt39

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Re: please advice...
« Reply #24 on: June 19, 2011, 06:26:18 PM »
I would just like to repeat what I said to a now dead infamous HIV denialist in London
PS he died off a heart attack, it was said and that may be true, he also weighed next to nothing and had been in Hos for a long time due to being so weak he was unable to care for his self .

I'm wracking my brains to work out who you mean - I thought you were talking about Clint Walters but then I thought you can't mean him because, even though he dropped dead out of the blue one spring sunday in 2010 of a heart attack at 31, he was ARV-adherent and had great numbers, good blood work and no recent indication of ill-health, and no loss of weight. Plus he was a famous HIV/AIDS activist.
http://www.queeried.co.uk/hiv-activist-clint-walters-dies-of-heart-attack-at-just-31/
So I'm still none the wiser who this infamous dead person is in my home city.

Offline CaptCarl

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Re: please advice...
« Reply #25 on: June 19, 2011, 07:16:32 PM »
Capt, forgive me for asking, but what do you think, was the cancer due to long term effects of HIV?

The cance is the result of HepB, which i was conifected at the time along with the HIV. The doc started tp expalin the whole HepB thing, but then just said to never mind, as I'll not live long enough for the hepB to cause any kind've problems reall. Complications from the HepB woul take 30-40 years to get to the point where'd they'd cause trouble. The HIV however, at that point was gonna do the job in 18-24 months.. No matter really the time might not be here right now, but it most definitely IS on the way.

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

 


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