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HIV Life >> Living With HIV

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
HIV is not for sissies
      #246518 - 07/12/09 09:40 AM

An editorial in my local paper bemoaned that the writer was saddened that his friend died of AIDS in 1994 just before the advent of drugs that would have allowed him to lead a long and healthy life. The editorial advocated that the readers should take advantage of free HIV screening so they could begin treatment early.

I wrote in a letter to the editor that while the new meds allow people with HIV/AIDS to live longer, that life is by no means healthy and that avoiding HIV infection was the best course. That editorial is indicative of what I see as a glossing over of the serious nature of having HIV and taking anti-HIV meds for long periods of time that is practiced by the medical profession.

I am 54, have been HIV positive for 25 years, and have taken anti-HIV meds for 15 years. During my time with HIV, I have been hospitalized three times, once with PCP, another time with an allergic reaction to Bactrim, and once with Viread related pancreatitis. I have taken AZT, epivir, zerit, DDC, DDI, sustiva, videx, viread, truvada, norvir, atazanavir, prezista, and issentress. Many of those meds had very unpleasant side effects – AZT made me nauseous and caused me to feel as if I was full of ants and sustiva gave me horrible nightmares and daytime delusions. All of the meds made me seriously nauseous and led to chronic acid reflux disorder.

I read over the years that doctors were concerned that the HIV meds would lead to disorders of the pancreatic mitochondria causing early onset diabetes and dementia. I watched as my blood tests reported that I was anemic and had liver dysfunction; due I was told by my doctor as a result of the HIV meds.

I am angry that my doctors never impressed upon me that an undetectable viral load does not mean that you do not have significant levels of HIV in you system, particularly in non-blood sources such as lymphatic and spinal fluid. The result of this low level infection is that year on year your brain and nervous system are exposed to the toxic effects of HIV. This low level infection in my case led over 25 years to debilitating cognitive and behavior disorders such that I cannot work. I am unable to follow conversations, multi-task, drive a car, control my anger and I am chronically depressed.

HIV has also caused painful neuropathy in my hands, feet and legs which has caused me to need a wheelchair to get around. I also have early onset osteoarthritis and osteoporosis. I take pain relievers for the osteoarthritis which further exacerbates my nausea.

As I told the writer of the editorial, HIV is not for sissies.

ScotCharles

--------------------
Life is a river.
Carpe diem.

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michalexe
Newbie

Reged: 07/12/09
Posts: 6
Re: HIV is not for sissies new
      #246520 - 07/12/09 09:50 AM

Hi,
thanks for posting!
you scare the shit out of me (call me a sissy) but still i think it's better to be informed. these are the things no one tells you, all you get to know is how meds can improve your life, they surley do but still...there is a dark side.
good luck 2 u!!!
m.

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hopefulone
Master

Reged: 12/05/08
Posts: 130
Loc: NY, NY
Re: HIV is not for sissies new
      #246524 - 07/12/09 08:58 PM

well put michael....i am so impressed by charles' ability to type/write as he does given how he describes his condition.

thank you both

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PKK
Newbie

Reged: 07/14/09
Posts: 5
Anyboby from Nairobi new
      #246543 - 07/14/09 02:56 AM

Anyboby from Nairobi?
Kindly lets talk.
//Peter


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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: HIV is not for sissies new
      #246715 - 07/26/09 01:08 AM

Thanks Hope4L1,

While I type well, the effort takes longer and takes more energy than is possible for an effective work day. I cannot work for longer than a few hours without a nap of several hours; nor, can I type a paragraph without errors unless I spend a great deal of time proofing and re-proofiing my work.

Peace and Love,

ScotCharles

--------------------
Life is a river.
Carpe diem.

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Britboy100
Member

Reged: 08/25/09
Posts: 11
Re: HIV is not for sissies new
      #247163 - 08/25/09 02:12 PM

ScotCharles - I actually want to thank you - and all the other long term survivors. You all paved the way for the treatment regimes we are now on. Without the dedication to taking those toxic meds in the early days, the industry wouldn’t be where it is today. Whilst this is no conciliation to how you feel right now, you have been part of something that’s helped millions of others live a better quality of life.

To all the others on here that are panicked – the world is a different place now. Take some comfort from that but remember all those that got us here.

Love from across the pond.

Britboy100


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lalito44
Newbie

Reged: 09/02/09
Posts: 2
Re: HIV is not for sissies new
      #247426 - 09/02/09 05:22 PM

I totaly agree with you thanks to people like scot we have new opportunity today. Thanks Scot for help us.

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