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Author Topic: What exactly is treatment like?  (Read 6311 times)

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Offline prayerblue

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  • Posts: 123
What exactly is treatment like?
« on: September 22, 2008, 07:04:12 PM »
Sorry to be a pest here, just have to ask... does the treatment really have the capacity to kill you or give you cancers/worse diseases than just not taking them? This word "toxicity" keeps coming up, as well as resistance which I'm scared of already... and side effects... is there any bright side at all?

Offline BT65

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Re: What exactly is treatment like?
« Reply #1 on: September 22, 2008, 07:12:51 PM »
The bright side is that you get to live a pretty normal life span (dependent on your other habits of course) instead of die in a short time span.  Your choice.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline anniebc

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Re: What exactly is treatment like?
« Reply #2 on: September 22, 2008, 07:17:56 PM »
is there any bright side at all?

Yes..the meds will keep you alive.

Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline aztecan

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Re: What exactly is treatment like?
« Reply #3 on: September 22, 2008, 07:22:53 PM »
As Betty said, you get the chance to live to a ripe old age with the meds. Without them, you are probably looking at seven to 10 years before the bottom starts dropping out.

That is an average, of course, and there have been some who have gone much longer without meds. But there also are others who were on meds the day after they were diagnosed.

Whether you experience any side effects from the meds is completely up to your body. Eveyone is different. Some have nasty side effects, which is what you usually hear the most about, while others have few or no side effects.

Those with few side effects are the folks you rarely hear from. These are they who are doing very well and have no reason to rock the boat.

I have been on meds for more than 12 years. I started with some of the nastier ones and I had some of the side effects.

But, I wouldn't change that for the world because I also have been living with HIV for more than 23 years. That sure wouldn't have happened without the help of the meds.

So, count your blessings the meds have improved as much as they have, and, stop worrying about something happening until it does.

Most of the time, the worrying is worse than the actual events, should they happen.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline prayerblue

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Re: What exactly is treatment like?
« Reply #4 on: September 22, 2008, 07:35:47 PM »
Thanks guys... are there ways to minimize the effects? Like OTC's to minimize discomfort and such? And are the first-liners the bad ones or is that later on?

Speaking of... is resistance really inevitable? Will I eventually run out of things I can even take?

Offline prayerblue

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Re: What exactly is treatment like?
« Reply #5 on: September 22, 2008, 08:33:48 PM »
Oh, and since I'm a newbie... I have to ask...

is it true at all what they say about the "myth" thing being that it's TAKING the pills that kills you, not the virus? I'm not saying I buy all the denialist stuff, would just love someone to explain why it's not true cause the fact the pills give such harsh effects sounds so diabolical...

Offline Assurbanipal

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Re: What exactly is treatment like?
« Reply #6 on: September 22, 2008, 09:05:50 PM »
Well... for me...

when I wasn't taking the pills I almost died

when I started taking the pills I got better.


And in general, if you look at just about any data source that separately identifies death rates from HIV,death rates dropped dramatically when people started taking HAART.  Its difficult to explain how come death rates dropped instead of going up if you think the pills are what is killing people.



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 prayerblue

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Re: What exactly is treatment like?
« Reply #7 on: September 22, 2008, 09:20:44 PM »
Good point... but I mean, what is toxicity and do these things give you cancer or other horrible long term effects?

Offline atlq

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Re: What exactly is treatment like?
« Reply #8 on: September 22, 2008, 09:50:06 PM »
Oh, and since I'm a newbie... I have to ask...

is it true at all what they say about the "myth" thing being that it's TAKING the pills that kills you, not the virus? I'm not saying I buy all the denialist stuff, would just love someone to explain why it's not true cause the fact the pills give such harsh effects sounds so diabolical...


Yeah, that's a myth-and without the quotation marks. In the 80's and early to mid 90's there were some harsh side effects from the early meds, but today side effects are manageable and you have the option of switching to another regimen if the one you are on is not tolerable, for whatever reason. I hear a lot of recently diagnosed folks become obsessed over the possibility of side effects- believe me if you have ever had an OI (or a number of them) , or had watched friends die in unimaginably excruciating ways, you would have the proper perspective..
“Keep up the good work....   And God bless you.”
  --  Sarah Palin, to members of the Alaskan Independence Party, 2008

Offline libvet

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Re: What exactly is treatment like?
« Reply #9 on: September 22, 2008, 09:54:54 PM »
There is no evidence that HIV medications cause cancer, that I am aware of.  Having no immune system certainly leaves you more susceptible to cancer.

And while some people have side effects that have substantial impact the quality of their lives, there are usually enough options for most people to switch to something they can tolerate.

No drug is without the potential for side effects.  However, it is a risk to benefit issue.  

When your immune system drops to the point that treatment is necessary, your options are basically try the meds or die.  

Personally, other than a bit of odd dreams for a couple of weeks and a little nausea and/or diarrhea on a few occasions since, I have had little in the way of side-effects from the antivirals and work full-time AFTER a diagnosis of full-blown AIDS 9 years ago.

Honestly, the worst I experience I had with a medication, was a interleukin-2 which I used to boost my t-cell count for 5 days every 8 weeks (technically, it is not really approved for that use in the United States).  The first two days were not bad, but the next three were miserable with a constant fever and body aches.  But IL-2 isn't really the meds you are talking about.

The antivirals can have some impacts on metabolism and fat distribution.  I don't know how "horrible" that might be considered.  Beyond that there is the possibility of liver problems, particularly if you are co-infected with Hep C or are a heavy drinker.

All in all, they side effects are about on par with what one would expect in a population being treated for a serious long-term chronic illness.

Who knows what the future might hold. Antiviral therapy is fairly new (really wasn't until the latter half of the 1990's it came into real use).   It may be that we find out our livers will all turn to shit in 30 years or so or that we all find ourselves gifted with horns and immortality.   Neither is extremely likely. but in relative terms, the horror stories tend to be either anecdotal and/or rare, or based on older uses (like mixing the wrong meds for a combo or doses much larger than used today to be effective when there was monotherapy).

Offline prayerblue

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Re: What exactly is treatment like?
« Reply #10 on: September 22, 2008, 10:06:58 PM »
So, another person who got to AIDS and is living well... I have to ask, what's the secret of it? Why do so many continue to die, and some come back from the brink and do so well?

Offline libvet

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Re: What exactly is treatment like?
« Reply #11 on: September 22, 2008, 10:19:48 PM »
So, another person who got to AIDS and is living well... I have to ask, what's the secret of it? Why do so many continue to die, and some come back from the brink and do so well?

It's not precisely a secret.  Take care of the body you have to the best of your ability without being so obsessive that it ruins your life.   Take your meds on time everytime and learn as much as you can so that you can be a partner in your treatment, not a non-playable character.

Offline prayerblue

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Re: What exactly is treatment like?
« Reply #12 on: September 22, 2008, 10:28:09 PM »
Thanks for the answers... I guess my fear comes from seeing at the ASO's the extremely ill looking patients who were looking so close to the end... I feared everyone ends that way, just by virtue of the virus...

Offline megasept

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Re: What exactly is treatment like?
« Reply #13 on: September 22, 2008, 11:21:08 PM »
Oh, and since I'm a newbie... I have to ask...

is it true at all what they say about the "myth" thing being that it's TAKING the pills that kills you, not the virus? I'm not saying I buy all the denialist stuff, would just love someone to explain why it's not true cause the fact the pills give such harsh effects sounds so diabolical...

Myths often have a kernel of truth. Unfortunately, that's not enough to make it anywhere near the whole truth. I appreciate how you put this; you want some answers. Besides, this effects you personally, too. Here's an anecdotal reply.

In the early 80s guys were getting sick dropping like flies, and many of them leaving this earth in as little as 1-2 years. They weren't necessarily taking any medicine at all before their demise. HIV, called GRID, then ARC, then AIDS, now HIV/AIDS was killing them. Of my many acquaintances and friends who were poz before 1986, Armando stands out. He received AZT as part of an experimental treatment. If he didn't follow the protocols of the study, he would be dropped and then no medicine (I cannot say for sure it was just the one med, but I do believe so). Well the massive dose of AZT made him so sick, he started secretly cutting his doses down by at least half. Secret, because he felt he had to lie or they would take all his medicine away! Even at 1/2 of what had been overprescribed. It wouldn't have killed my wonderful friend if the MDs had known how to dose it. Others remember, though I have forgotten, but the overdosing was by a factor of at least 10 X, perhaps even more, than what he needed. Combo therapy wasn't around yet. He probably did die early from overdosing AZT. He also died from getting sick from HIV "too early" in an epidemic, even before (flawed) combo therapies. He was a very sick man before starting AZT therapy. The misguided therapy contributed to his early death. There are lessons, but no villains here.

Mark's answer above is typical of a wise treatment-experienced POZ. He is no cheerleader for meds, but you can see has chosen to take any number of medications for HIV and other illnesses (some probably OIs).

I take meds (again) too. I take them when I need to (none for years at a time). I let my immune system work on its own when I think it can handle it. Therapy side effects are bothersome. My medical health and survival are more important to me. I am grateful for those that work hard to design and tweak the therapies we now have.

Offline BT65

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Re: What exactly is treatment like?
« Reply #14 on: September 22, 2008, 11:39:10 PM »
I take meds (again) too. I take them when I need to (none for years at a time). I let my immune system work on its own when I think it can handle it. Therapy side effects are bothersome. My medical health and survival are more important to me. I am grateful for those that work hard to design and tweak the therapies we now have.

To take meds on and off is not really suggested.  I've been on meds since 1990.  Last year I took a "drug holiday" (went off HAART) and my CD4s dropped dramatically.  That's a mistake I shant make again.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Finnboy

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Re: What exactly is treatment like?
« Reply #15 on: September 23, 2008, 03:52:03 AM »
Meds prolong life.

I don't know anyone who has died as a result of taking HIV meds. The only people I have ever heard saying that you will die as a result of taking meds are AIDS denialsists .. and look how many of them have died prematurely of AIDS, precisely because they refused to accept the meds that could have prolonged their life.

HIV has long been known to cause cancers and certain cancers were once commonplace amongst people with AIDS. Modern treatments mean that those cancers are now quite rare.

Irrespective of whether or not they are HIV-positive, or taking antiretroviral drugs, people get cancer. In fact, lots of people get cancer. There is some evidence that some cancers are a little more common in those who live with HIV; but given that we know that HIV can cause cancers, that isn't so surprising .. especially as taking meds means that we live longer and therefore get more opportunity to experience the long-term effects of living with the damage caused by HIV.

Is life on meds always a bed of roses? No, but it smells one hell of a lot sweeter than having to get by without meds would.
« Last Edit: September 23, 2008, 04:01:30 AM by Finnboy »

Offline LordBerners

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Re: What exactly is treatment like?
« Reply #16 on: September 23, 2008, 05:52:00 AM »
I was a skeptic at first as well, but now I've been on meds a couple of months with very little side effects other than dizziness at night, and feeling generally a little sleep deprived. 

I don't know if the meds will make it possible for me to 'live a normal lifespan', or whether unknow or known long term side effects may cause serious health problems later, but I don't think there's any doubt they will increase my lifespan compared to not taking them.

My main concern is the availability of medication, not its intrinsic value.  I don't know from what country the original poster hails, but we americans who are indigent have to deal with the very real possibility of not being able to access treatment.
Please, just call me Berners.. or Baron.

Offline Iggy

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Re: What exactly is treatment like?
« Reply #17 on: September 23, 2008, 06:27:39 AM »
Hey Prayerblue,

I see your basic questions have already been answered (and answered well) by aztecan, and philly in particular.

I'm just going to stress that you can't predict what if any short term or long term side effects you may (or may not) experience.

I started meds in June/July and outside of two weeks of minor issues (stomach/digestive mainly) I've not expereinced any serious side effects of note.

As for long term effects?  Yes.  They are a reality.  However the seriousness of that reality is debatable particularly for someone just starting meds now.  Meds continue to be improved and many of the current ones plus the ones in the pipeline are being examined for increased effectiveness and less side effects.


Offline prayerblue

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Re: What exactly is treatment like?
« Reply #18 on: September 23, 2008, 07:40:23 AM »
Thanks, everyone... I'm just trying to get my mind back to normal, so that I can fight this and give it my all so that I will be as lucky to have 23 or more years like Mark or others on here... I'm just hoping it'll be possible.

Offline jabez

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Re: What exactly is treatment like?
« Reply #19 on: September 23, 2008, 11:44:06 AM »
Prayerblue, please understand that 'AIDS' just ain't like it used to be.   It's not the "beginning of the end" or whatever.

Last year, I had AIDS.   (That's a CD4 count of less than 200).  They wrote it down on my chart -- AIDS.   If you want to be dramatic, "full blown AIDS".    Just the sight of the word 'AIDS' scared the shit out of me.   I started taking medicine (which I wish I had started a year earlier), and now I've rebounded, and I've never missed a single day of work because of sickness.   I'm work full-time and play tennis regularly and get all kinds of strenuous exercise.   No one who knows me would EVER guess that I'm HIV positive or that I got an AIDS diagnosis last fall.   As long as I take my medicine every day and live healthy, I'll be all right.  So will you.   
Sept 2007 -- CD4 = 68; VL = 469,000
Started Atripla Sept 21, 2007
Nov 2007-CD4=217;VL=332
Feb 2008-CD4=237;VL=<50
Apr 2008-CD4=271;VL=66
Aug 2008-CD4=440;VL=52
Jan 2009-CD4=403;VL=61
May 2009-CD4=480;VL=129
Sep 2009-CD4=376;VL<40
Jan 2010-CD4=476;VL<40
Jul 2010-CD4=539;VL<40
Jan 2011-CD4=461;VL=53
Jul 2011-CD4=515;VL<20
Jan 2012-CD4=506;VL=54
Aug 2012-CD4=440;VL=21
Jan 2013-CD4=447;VL=<20
Jul 2013-CD4=406; VL=<20

Offline jennynyc7

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Re: What exactly is treatment like?
« Reply #20 on: September 23, 2008, 12:08:35 PM »
Yep same here. No side effects and never miss work. Life goes on as usual here.
12/24/07-infected
1/3/08-ARS began
2/12/08-diagnosed
Initial Vl=99000
CD4=585
2/14/08-began Truvada/Reyataz/Norvir
3/01/08=Swapped Reyataz for Viramune
5/1/08:     vl= undetectable
                cd4=1250
10/24/08:  vl=undetectable
                cd4=1172 (55%)

12/4/08:    vl=254 (hopefully just a small blip)
                cd4=1234

Offline prayerblue

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Re: What exactly is treatment like?
« Reply #21 on: September 23, 2008, 09:25:08 PM »
Everyone, y'all are awesome... and the counselor I saw today said he'd be surprised if I even needed meds for quite a while... and is still hopeful for things to come that will severely hamper the virus, like the entry inhibitor class (don't know the name?) that's apparently new and revolutionary...

Offline prayerblue

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Re: What exactly is treatment like?
« Reply #22 on: September 24, 2008, 07:52:51 AM »
Read a lot of mixed reactions to atripla, but keep hearing it's a common first-line of attack drug... i'm confused, i thought lipodystrophy was not as common nowadays but the fact sheet on poz.com seems to imply it happens with this drug?

But so here's a question for all who come across it, and I've gotten Ms. Jenny's opinion and like her charisma but want to see if others concur or dissent. Early treatment... yea or nay? I mean like trying to keep your t-cells from dropping ever by early-on regiments? I read some scary stuff about memory t-cells never coming back and some people not responding to treatment in that their VL goes way down but their t-cells never recover... is that common in younger and older alike?
« Last Edit: September 24, 2008, 08:11:03 AM by prayerblue »

Offline Ann

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Re: What exactly is treatment like?
« Reply #23 on: September 24, 2008, 08:23:29 AM »
Blue, how about we wait until your WB results are back friday before we get into a "when to start treatment" debate.

Try reading the lessons in the meantime. OK?

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 prayerblue

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Re: What exactly is treatment like?
« Reply #24 on: September 24, 2008, 10:33:22 AM »
Sorry, Ann... I'm just trying to adjust and get a fighter mentality going... I swear I only mean well... I'm just in fear that my strain will be a hard one to fight or untreatable altogether... but thanks for at least speaking as if there is some hope it was false. I'm still hopeful too, actually... I just wish it was realistic.

Offline Miss Philicia

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Re: What exactly is treatment like?
« Reply #25 on: September 24, 2008, 10:45:01 AM »
Blue, how about we wait until your WB results are back friday before we get into a "when to start treatment" debate.

Try reading the lessons in the meantime. OK?

Ann


Iti's been a week now and he's still not gotten this WB test done -- I don't understand this, and he doen'st answer it.
"I’ve slept with enough men to know that I’m not gay"

Offline jennynyc7

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Re: What exactly is treatment like?
« Reply #26 on: September 24, 2008, 11:08:41 AM »
I have seen him say several times that he gets his western blot result this friday.
12/24/07-infected
1/3/08-ARS began
2/12/08-diagnosed
Initial Vl=99000
CD4=585
2/14/08-began Truvada/Reyataz/Norvir
3/01/08=Swapped Reyataz for Viramune
5/1/08:     vl= undetectable
                cd4=1250
10/24/08:  vl=undetectable
                cd4=1172 (55%)

12/4/08:    vl=254 (hopefully just a small blip)
                cd4=1234

Offline Miss Philicia

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Re: What exactly is treatment like?
« Reply #27 on: September 24, 2008, 11:14:33 AM »
I have seen him say several times that he gets his western blot result this friday.

Can you provide a link to this claim?  Because in his other thread he said he had not -- maybe his boyfriend did.  Unless I'm mistaken.  I'm quite clear he's stated that this was not the case, but like I said I could be in error.

It's hard to really understand what he's writing and he keeps beating around the bush, jenny -- you know, and Ann (aka the Moderator isn't all at clear -- it behooves me that you are)

Whatever the case and whatever the test the result are not due until Friday, 26 September

see here:  http://forums.poz.com/index.php?topic=23190.msg295086#msg295086

It would be wise to stay calm until that point, and perhaps in the Am I Infected section, instead of obsessing over AIDS OI's like KS and lipo which don't occur until 20 years from now.  There's a huge disconnect from reality, which is rather unseemly for those of us who... uh -- actually deal with such things.
« Last Edit: September 24, 2008, 11:25:19 AM by philly267 »
"I’ve slept with enough men to know that I’m not gay"

Offline jennynyc7

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Re: What exactly is treatment like?
« Reply #28 on: September 24, 2008, 11:51:45 AM »
Yeah, you are right, either way, his results aren't in yet. I am not sure how to quote from another thread but here is what you asked him:

OK.  So when are you having the WB done?  I would think that should be the next stop, if I'm not mistaken.

This is the fourth day and I see little to no movement with this.  Are you making calls bout obtaining this test


His reply: The clinic said results should be in Friday...


12/24/07-infected
1/3/08-ARS began
2/12/08-diagnosed
Initial Vl=99000
CD4=585
2/14/08-began Truvada/Reyataz/Norvir
3/01/08=Swapped Reyataz for Viramune
5/1/08:     vl= undetectable
                cd4=1250
10/24/08:  vl=undetectable
                cd4=1172 (55%)

12/4/08:    vl=254 (hopefully just a small blip)
                cd4=1234

Offline prayerblue

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Re: What exactly is treatment like?
« Reply #29 on: September 24, 2008, 11:52:27 AM »
Philly, no offense, but you seem to be accusing me quite a bit... if I'm unclear, I can prove as jenny said that not only did I post in my AM I? board when my b/f tested positive and confirmed by WB, I can prove that I've said on many occasions that the clinic said confirmatory tests would be in on Friday of this week, so two more days. I'm sorry if I'm offending somehow, I can guess I'm not high on people's buddy lists but this is hard to take for anyone I can imagine...

Offline Ann

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Re: What exactly is treatment like?
« Reply #30 on: September 24, 2008, 12:31:14 PM »
Blue,

What's upsetting people is that you aren't even confirmed hiv positive but yet you've got nearly 90 posts - most of them worrying yourself sick over something that might never happen. People would just like to see you calm down a bit. The time waiting for your WB result would be far better spent - and would go much faster for you - if you stepped away from your computer and went out and did something productive.

It's time consuming to keep answering questions - and frustrating too when the questions might well be pointless in the first place. If you disregard my advice to you to get off your computer, then at least show some courtesy and use your time to read some of the thousands of posts already on this forum - many which deal with the same things you are asking about. And read the lessons too.

You are not the first person to have to wait for a WB result, however, you ARE the first person here to wear the patience thin of so many other members while waiting. If by chance your result does come back positive, you don't want to have already worn out your welcome here. Please consider the feelings of others. We understand you're upset. We get it. BUT, until we know one way or the other, much of this is purely academic.

Take a few deep breaths and go get busy with something non-hiv related. All the fretting in the world is not going to make Friday happen any sooner.

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 next2u

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Re: What exactly is treatment like?
« Reply #31 on: September 24, 2008, 12:51:56 PM »
hello pb,

wow, your questions are kind of grating and it seems your obsessing over this. understood, definitely been there. have you picked up any good literature? we have a wealth of knowledge among us, but maybe some other sources might help answer your questions too.

the others have given you outstanding advice. yes, meds suck. no, you will not die from meds. yes, you can live a long life. no, no one knows when you will die but most likely you will live close to an average life span.

outside of that, specifics are hard to pinpoint because (as someone said previously) everyone's body & lifestyle is different. so, back to your original question.

no, treatment will not kill you. hiv may not kill you. but one day you will die. no one knows how you will die. toxicity can happen. the level & nature of that toxicity depends on your body's chemistry. it may not happen, it may totally suck. it's definitely better to be toxic than dying. i experience toxicity on a regular basis because i drink way too much. hangovers are a bitch man.

resistance is a concern but don't fret over it. you can get genotype testing to see if your strain has any resistance. building up resistance is a factor but there are many drug combos & new classes out. at the last conference they talked about the new classes of drugs and how they were helping people who were resistant to all other drugs on the market.

basically, yes, your fears are real. worrying about them will not help. your fears are also irrational. please, go have sex with your boyfriend, yourself or do something you like. as time passes you will not focus so much on the what ifs. instead, you incorporate hiv into your life and plan things accordingly.

2 books i like:

The First Year HIV. An Essential Guide for the Newly Diagnosed - Brett Grodeck
The Guide to Living with HIV infection - John G Bartlett & Ann K Finkbeiner.

now, what else can we do for you : ) . oh, and chill man, things will be good still. i appreciate your questions. these are things i wonder about but have found answers to. i'm not on meds yet but know a lot of people who are on meds and they function well. i know a lot of people who aren't on meds who i wouldnt want to be also (hiv neg folk). hope your day is going well, looking forward to reading more of your posts.

best,
d
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline prayerblue

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Re: What exactly is treatment like?
« Reply #32 on: September 24, 2008, 02:22:07 PM »
Ann-

A million times I can apologize... but I can only hope to be forgiven in time. In either case, I've been reading and having to take the good and bad of what I read as I go... renal failure... impaired livers... toxicity... it's just a lot to take in. I appreciate it that at least you haven't exercised the ban-hammer because at least somewhat I have a reason to be present, just obviously not to anyone's liking of how far I "obsess..." But the secret is that I've always had a fear of death for the precise reason my dad died young and that I've had many crises of faith in thinking if or how there could be anything after you die...

next2u, thanks for at least softening the punch of saying I'm obsessing but understanding to a degree why. I love your succinct answers to the questions... I wanna live out my lifespan that I had before (if) this is confirmed... but I understand. Sorry to be so persistent, I really do like that people here try to comfort and I don't wanna burn any bridges...

I don't do drugs and I drink sparingly, but I'm heavy-set and need to hurry and lose it before I get diabetes. But weirdly enough... some people tell me that diabetes is much worse than the virus in what it does to you over years even with treatment... so I'm taking things as I get them, hoping at the end of the day to either be negative or at least have a wild unresistant strain.

Offline Iggy

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Re: What exactly is treatment like?
« Reply #33 on: September 24, 2008, 02:32:39 PM »
. In either case, I've been reading and having to take the good and bad of what I read as I go... renal failure... impaired livers... toxicity... it's just a lot to take in.

PB,

This part of your quote is exactly what Ann and others are talking about. 

You are spending way too much time reading about things that even if your results come out positive are not really concerns for you for the forseeable future and with today's meds unlikely to be concerns for the most part in your life (hiv or med wise)

Just take it easy and stop reading ANYTHING until you get your results.

Modified:  To be clear you are welcome here and no one wants you to feel otherwise, but asking you to take a breathe and slow down is not the same as telling you to stop posting.  ok?
« Last Edit: September 24, 2008, 02:34:56 PM by Iggy »

Offline Ann

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Re: What exactly is treatment like?
« Reply #34 on: September 24, 2008, 05:45:08 PM »
This bears repeating:

To be clear you are welcome here and no one wants you to feel otherwise, but asking you to take a breathe and slow down is not the same as telling you to stop posting.  ok?
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 prayerblue

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Re: What exactly is treatment like?
« Reply #35 on: September 24, 2008, 06:30:33 PM »
I know, everyone. Thanks for even this much allowance of me to be around... I am really, really sorry for the fact I seem to be delving in too much too fast... I just want to live, damn it, and live to a ripe old age!

You're right on me needing to do other stuff. I am seeing a psychologist and a psychiatrist separately, so two counseling sessions a week for the immediate future seems likely. I'm getting back into studying slowly, though this is more catching up than being caught up. I'm trying to be sociable at school, but when I feel there's an big red x on me (good analogy, saw it in the "dearest grandson" post) it feels hard to make friends.

Ann, obviously you from the beginning had to put up with my hypochondria and I hope you still think there is a chance it will be negative too... but, I reread an old note you sent... "either way, it's not the end of the world."

So why does it feel like it? I dunno... but you're right, I need to have a life outside of the (potential) virus, not the virus controlling my life.

Offline mecch

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Re: What exactly is treatment like?
« Reply #36 on: September 25, 2008, 05:39:46 PM »
This is less a response to prayer's obsessive questions generally, and rather a specific answer to "what is treatment like".

Treatment feels right!

I took my first treatment 6 weeks ago.  The next morning I woke up and went to have a coffee with a friend. He asked me how I felt. I thought carefully. I said, I felt like I had had a nice massage while I slept. 

(Mind you, I had a viral load of 3-4 million.) I am usually a sporty person and since seroconversion in early May, every month my energy drained away some more.

One week after starting therapy I felt normal energy again.  Radical!

Its the emotions and shock of being HIV poz that challenge me now, not HIV in my body.

One time I woke up and worried that I had forgot to take my dose.  I took another cause it was less than 7 hours late.  (I later figured out that in fact, I therefore double dosed).

Treatment felt a bit loopy that day. (Sustiva :o) When everyone had left a shared office, I lay on the floor and looked out the window at the September trees.  I felt drugged and I decided I would for a moment, visualise what the HAART was doing. Rather than feeling poisoned, I saw that the medicine was blocking whatever virus was still circulating.  I didn't see it killing the virus. It was kind of like a scene from The Fantastic Voyage that cheesy movie about a microscopic submarine in a person's body, combined with a Star Wars spaceship. 

The Star Wars space stations were my cells, and the HiV meds were blocking all the ports so the invading HIV couldn't dock. This was inaccurate cinema, because I'm actually on meds that function a different way, but the image made me feel comfortable with the strange feeling of being a bit overdosed so I didn't panic.

(I never panicked on acid either, but one time I sort of did on hash. Hehe)

I watched my visualisation for a while and then i watched the pretty trees out the window again, and felt calm, and then the phone rang and it was a friend and I snapped out of it and went back to my life.

OK this if now for you, PRAYER:  besides dealing effectively with your virus, treatment makes you feel that you have hope and a future.  Sure some people don't need treatment and have all the hope in the world and that works for a few people. But if you and your docs decide you do need treatment, DON'T RESIST it.

I would spontaneously break into tears and sadness and despair about HIV before I started treatment, (it was combined with seroconversion stress) and that drama dropped away immediately!!!

« Last Edit: September 25, 2008, 05:56:29 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline prayerblue

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Re: What exactly is treatment like?
« Reply #37 on: September 25, 2008, 07:05:36 PM »
aw, cmon mecch, you gotta make that comment about my post? solidarity... or at least forgiveness... i'm not a bad guy, i swear... but thanks for answering, this topic i meant well with.

Offline mecch

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Re: What exactly is treatment like?
« Reply #38 on: September 26, 2008, 03:48:35 AM »
Sorry for the comment about your repeat questions, i wish you all the best!

I answered your question generally first cause I thought it was an interesting question for this virtual community. 

Also, I learned from other people's contributions. 

The message to you, prayer, from just about everyone is that people hear your anxiety about hiv and all that might go with it.  Some of us came to these threads with some of the same concerns as you - there is solidarity. 

Prayer -- notice, as i did, that most people in these threads express how grateful they are for treatment and a lot of people express all the benefits of treatment.  And yeah some people share the downsides but even most of those with treatment-related problems still see being treated as a godsend considering the alternative. 

IF you need treatment, if being key, Im sure being treated will bring you many health advantages!

If you are the sort of worrywort who takes medicine and gets well, and gets a DOUBLE benefit because taking medicine makes you feel better cause less worried, treatment will be especially great for you! 

If you ever do get treated for HIV and that makes you overly anxious about what could go wrong with the treatment - that's not going to work out so well.  You'll miss enjoying the upside. 

And be well.
« Last Edit: September 26, 2008, 05:31:03 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline SoSadTooBad

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Re: What exactly is treatment like?
« Reply #39 on: September 27, 2008, 09:21:39 AM »
PB - not sure if you have your confirmatory test yet...

Think of meds a different way...

They change the feelings of helplessness and panic you have now into feelings of action and hope.

WHEN and IF you need treatment, the meds will return control of your future largely to your hands. 

The side effects, if you have any, will be manageable. 

Best of luck.

Offline Ann

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Re: What exactly is treatment like?
« Reply #40 on: September 27, 2008, 09:26:04 AM »
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 megasept

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Re: What exactly is treatment like?
« Reply #41 on: September 28, 2008, 08:29:50 PM »
To take meds on and off is not really suggested.  I've been on meds since 1990.  Last year I took a "drug holiday" (went off HAART) and my CD4s dropped dramatically.  That's a mistake I shant make again.

Each one of us is different. My "on" and "off", then back "on" has been over 12 years of 18 years poz. I am on ARV now, for a bit over a half year.

My specialist asked me to go on an STI, and I did just that for exactly seven years. It took that long to meet the threshold for starting treatment, VL > 100000, and/or CD4 < 300. I also was undetectable a bit over a year---not the first year---but the second after ceasing treatment. The CD4 drop was generally occasional (flat after each drop) with few returns to previous higher levels. Most CD4 overall decline was in last year, not the first six of the STI. In my case the STI went well, perhaps somewhat similar to newly poz delaying initiating first treatment, a period that can last years, just as easily as months.


« Last Edit: September 28, 2008, 08:44:29 PM by megasept »

 


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