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Author Topic: Question for LTS people?  (Read 675 times)

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Offline absopozilutely

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Question for LTS people?
« on: July 29, 2014, 01:01:40 AM »
I want to do a poll but don't know how. So here's my question: do you feel that the problems you have had with HIV were caused by previous medicines and lack of research, or do you think that the problems were from HIV itself? I hope I'm posing that question the correct way, I'm just curious. I really hope for some good posts on here, and hope it's not to Q&A for you guys so new bees please go easy on commentary to them.
12/18 Infected
2/4 12:22pm tested POZ via ORAquick
2/19 WB Confirmation
2/4-2/19 VL 104,678 CD4 407
3/2 Genotype back, and Started Complera
4/2-CD4 688 38% and VL 1,600
5/1-CD4 592 42% and VL 336
5/22-CD4 732 31% and VL 109 :( STILL NOT UD!
5/31 Switched to Stribild :( I'll miss you Complera!
6/19 CD4 508 35% and VL UD!!!!! Crying at work like a baby.
9/19 CD4 799 46% VL UD yayyyy

Offline ltsurvivoroc

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Re: Question for LTS people?
« Reply #1 on: July 29, 2014, 02:13:59 AM »
As a 32 yr survivor I think the best response to your question is all of the above are causes.  To what extent varies from person to person and from problem to problem.

Offline Theyer

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Re: Question for LTS people?
« Reply #2 on: July 29, 2014, 02:51:33 AM »
As a 32 yr survivor I think the best response to your question is all of the above are causes.  To what extent varies from person to person and from problem to problem.

That covers it , at the time the HIV protesting community where pushing to get the drugs out there and I took them gladly so The damage done was half expected and I am part off the responsibility group,How where the non damaging doses to be found? If it was on monkeys then humans where STILL not getting the stuff

Hindsight makes us all soooo clever.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline BT65

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Re: Question for LTS people?
« Reply #3 on: July 29, 2014, 05:12:00 AM »
I have to agree with the former posters-both the meds and HIV itself.  When asking about "which one" i.e. meds or HIV, caused this or that, the usual answer is "both."   Of course, unchecked virus caused many different illnesses, then not knowing how to use the earliest HIV meds, the meds themselves, caused different things to happen. 

My neuropathy was caused from the early meds, (ddI, ddC, etc.), my "gut" that will never go away from Crixivan (though this was not one of the earliest HIV meds), the wasting syndrome from HIV, the different pneumonias I've had during previous years from HIV, and the list can go on.  But that's the idea.  Depends on what the problem is, and different people experienced, and continue to experience, different things.   

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Theyer

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Re: Question for LTS people?
« Reply #4 on: July 29, 2014, 06:33:56 AM »
Exactly The Countessa Betty . One of the reasons I am in Hos now is because of the early on set off osteoporosis in due (LARGE part due ) to high dose AZT . During the Concord trial.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline wolfter

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Re: Question for LTS people?
« Reply #5 on: July 29, 2014, 06:53:32 AM »
Firstly, I honestly can't imagine any of us need "protected" from newbies.  :)

We'll probably suffer much worse simply because of the historical timeline.  Obviously, there were no meds available and it took a horrible toll on many of us.  Our community also pushed for drugs that didn't adhere to stricter clinical trails for other drugs. 

Many of us also started with out with first generation drugs while  being deathly sick in many instances.  It'll be a difficult chore to assess cause/affect and that's what the next generations are for.  Guinea pigs of the future.   8)

I'm also curious, what are you trying to garner from this "poll"?

wolfie

Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Miss Philicia

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Re: Question for LTS people?
« Reply #6 on: July 29, 2014, 08:34:01 AM »
My lipoatrophy issues were definitely caused by the meds used in the 1990's. Being diagnosed with hypertension at the age of 40 was probably due to them as well.

However my extremely bad neuropathy issues did not appear until recently -- same with my arthritis issues. Keep in mind I've had quite high cd4 counts for at least 8 years now.

And while I don't have osteo issues like other LTSers, I've seen non-LTSers on this forum develop it.

I've also had a lot of non-HIV related medical issues to deal with, things that would have occurred to my body even if I'd remained negative. People need to keep in mind that as you age other things are going to happen.
« Last Edit: July 29, 2014, 08:41:03 AM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline weasel

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Re: Question for LTS people?
« Reply #7 on: July 29, 2014, 08:08:51 PM »
I want to do a poll but don't know how. So here's my question: do you feel that the problems you have had with HIV were caused by previous medicines and lack of research, or do you think that the problems were from HIV itself? I hope I'm posing that question the correct way, I'm just curious. I really hope for some good posts on here, and hope it's not to Q&A for you guys so new bees please go easy on commentary to them.

    I consider myself lucky !
      I was a long term non progressor , so I never dealt with the first generation MEDS .
       The damage done , mostly from inflamed body parts was to the point of devastation .
      The Medications have stopped the inflammation , not before loosing half my teeth  :'(
      I m about to turn 60 in a few weeks and feel and look for the most part very well .
      IF my V.A. doctors had @Thetime taken my health more seriously I may have not
      aged as fast as I have .
       Having an identical twin that still looks like a healthy 50 year old  tells me HIV has
      worked it's job on my body and soul .

        I look forward to one day saying  OMG !   " I'm about to be 70 !  "


                                                                                      Carl   
" Live and let Live "

Offline Since1993

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Re: Question for LTS people?
« Reply #8 on: July 29, 2014, 10:08:30 PM »
I refused to take AZT and the older drugs because I saw what they were doing to my friends and at the time I first tested +, my CD4 count was 1000.  In fact, I avoided all ARV for years until my CD4 count dropped significantly lower.  It wasn't until year 17, without ARV's that I began experiencing problems physically; neuropathy, renal insufficiency, vitamin deficiencies, pain, muscle aches, bad labs, etc.   Starting HAART did improve my overall discomfort and "numbers", however, the neuropathy and renal stuff will never go away according to the docs.  Whatever long-term effect I will have from HAART will come later because I started late.  The physical problems I have now were caused from advanced HIV, not long-term effects from medications.

It will probably be another 20 years before a better picture of the long-term effects of HAART are known (as it relates to those who took only HAART).  Hopefully there will be a cure by then.

Clearly, it is better to start HAART sooner than later.  Your mileage may vary when it comes to long-term effects based upon your genetics and lifestyle


I will say that my appearance hasn't changed much at all in over two decades, in fact, long-time friends claim I still look young.  I feel like a beat-down hooker in shoddy pumps sometimes, but otherwise my quality of life is better than pre-HAART.



« Last Edit: July 29, 2014, 10:15:08 PM by Since1993 »

Offline absopozilutely

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Re: Question for LTS people?
« Reply #9 on: July 30, 2014, 01:05:28 AM »
No agenda here. I was mostly just curious, there's a large mix here. Some people say that HIV has caused them horrible quality of life, etc. others say it's been fine, there's just a large mix. What's frustrating is not knowing, I mean I'm no Sylvia brown here but knowing my future would be a bit awesome. I like knowing your guys' stories because they're life lessons really. I mean there's how many people that have been living with this for how long on this site? That's a lot of mentors and experience. I really was just curious how much the new meds have advanced, how much control have we really gotten on this virus, if that makes sense.

It's not that I want people or me to barrage you with questions, but it's nice to know that things have gotten better, that while this sucks having this virus, you all reassure us that were not going to die from this. I have a friend who's been poz for 5 years, 0 complications, UD the entire time, on meds. I want to come out to my family soon, but I want a better understanding. I mean I've done hours and hours of reading, but no one really had asked LTS people, what they thought. I learn everyday more, like today reading that you can still get KS with high CD4's I never knew that. Or that you can still get pcp, with high cd4. I mean yes that makes me a little more scared, but I'd rather know. I learned that it's likely I'll have a stroke or heart attack, especially because I got this virus so young. It gets 30-40 years to screw with my body. But I don't need to worry about that right now, instead I'm gonna take 10 years and enjoy my life, with a great quality! Thanks to those who did answer, I'll hope to hear more answers.

Always,

Abso!
12/18 Infected
2/4 12:22pm tested POZ via ORAquick
2/19 WB Confirmation
2/4-2/19 VL 104,678 CD4 407
3/2 Genotype back, and Started Complera
4/2-CD4 688 38% and VL 1,600
5/1-CD4 592 42% and VL 336
5/22-CD4 732 31% and VL 109 :( STILL NOT UD!
5/31 Switched to Stribild :( I'll miss you Complera!
6/19 CD4 508 35% and VL UD!!!!! Crying at work like a baby.
9/19 CD4 799 46% VL UD yayyyy

Offline Tonny2

  • Member
  • Posts: 453
Re: Question for LTS people?
« Reply #10 on: July 30, 2014, 10:54:28 AM »
No agenda here. I was mostly just curious, there's a large mix here. Some people say that HIV has caused them horrible quality of life, etc.,

                           Hi, I understand what you mean, I just can tell you to relax, live your life and don't worry about what is going to happen in the future, ok? nobody know what the future looks like for negative and positive people...we just have to be more vigilant of our body (pay more attention on any changes), that's it...good luck    ojo

ps, by the way I suffer from neuropathy from the erliest meds ddi,ddc, d4t (VIDEX< HIVID< ZERIT)

Offline mecch

  • Member
  • Posts: 12,169
  • red pill? or blue pill?
Re: Question for LTS people?
« Reply #11 on: July 30, 2014, 02:47:07 PM »
No agenda here. I was mostly just curious, there's a large mix here. Some people say that HIV has caused them horrible quality of life, etc. others say it's been fine, there's just a large mix. What's frustrating is not knowing, I mean I'm no Sylvia brown here but knowing my future would be a bit awesome. I like knowing your guys' stories because they're life lessons really. I mean there's how many people that have been living with this for how long on this site? That's a lot of mentors and experience. I really was just curious how much the new meds have advanced, how much control have we really gotten on this virus, if that makes sense.

It's not that I want people or me to barrage you with questions, but it's nice to know that things have gotten better, that while this sucks having this virus, you all reassure us that were not going to die from this. I have a friend who's been poz for 5 years, 0 complications, UD the entire time, on meds. I want to come out to my family soon, but I want a better understanding. I mean I've done hours and hours of reading, but no one really had asked LTS people, what they thought. I learn everyday more, like today reading that you can still get KS with high CD4's I never knew that. Or that you can still get pcp, with high cd4. I mean yes that makes me a little more scared, but I'd rather know. I learned that it's likely I'll have a stroke or heart attack, especially because I got this virus so young. It gets 30-40 years to screw with my body. But I don't need to worry about that right now, instead I'm gonna take 10 years and enjoy my life, with a great quality! Thanks to those who did answer, I'll hope to hear more answers.

Always,

Abso!

People who are HIV- can and do get KS.
You know so such thing - that "it's likely I'll have a stroke or heart attack."
There are a lot of things you cannot extrapolate from the past, from LTS, and apply to how its going to be for you, when in the distant future - 2030? 2040? - you are a long-time "liver" with HIV. 
That is not to say there is nothing to learn. Far from it. There are many wisdoms and experiences.
Just consider this.  Think of your friend - "been poz for 5 years, 0 complications, UD the entire time, on meds."
In 25 years, is the term LTS - "SURVIVOR" - going to apply to your friend, you, in the same way "survivor" means something really specific to people who survived the 80's and 90's?  I would say - NO.
We are all HIV+ and we face some similar challenges - legal, financial, affective, psychological, etc.

Just my opinion, as not a LTS, that its two different ball games... sometimes. 

« Last Edit: July 30, 2014, 02:49:50 PM by mecch »
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

 


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