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#265746 - 12/07/08 07:25 AM coming to terms with being HIV+
duncanUK Offline
Member
MaleSurvivor

Registered: 12/24/06
Posts: 632
I want to post something positive. I was diagnosed as HIV+ over a year ago now and my CD4 count was already in decline. I have never been able to face the truth that i am HIV+.

I remember when the HIV/AIDS "epidemic" first hit the news headlines -it was scary but at the same interesting. The myths surrounding the virus and the stigma that still persists today.

I am still in denile that i am HIV+ and as a result of this i made the decision to stop taking the drugs. I know that to some this may seem like suicide but then again we do not know for sure what the future holds.

I remember on my visits to the clinic there were people who are classified as Long term progressors and just go for the usual blood tests and do not require the drugs.

The doctor told me that i am not one of these people and that without the drugs i will get sick fast, well todate i am not ill. I keep my self physically fit, i ride 24miles a day apart from the weekends. I firmly believe that the cycling keeps the virus under control and gives me a positive feeling.

duncan

_________________________
you dont see me. i am not really here. Its my fault.. all of it. I am to blame and no one else.

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#361369 - 05/03/11 04:03 PM Re: coming to terms with being HIV+ [Re: duncanUK]
Navi7 Offline


Registered: 05/02/11
Posts: 4
Loc: South Africa
I agree with you 2200%. Only add God to my equation. Sounds like a cure.

_________________________
How does God speak, because I am listening. Someone help me!

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#427567 - 03/09/13 11:18 AM Re: coming to terms with being HIV+ [Re: duncanUK]
Justnotright Offline


Registered: 02/10/13
Posts: 19
Loc: Mid-Michigan
Keeping fit can help. Thatís good.

Iíve been POZ for over 12 years. My husband has been POZ for over 30 years. It is due to the pioneers like my husband that we can have the types of medications we have today. They aren't as nearly has harmful as they once were.

I remember finding out that I had been exposed to the virus all those years ago. I was devastated. I didn't know where to turn or what to do. I was married to a woman at the time and had 4 small children.

When she found out (about my being gay and the HIV thing) she immediately kicked me out of the house and had the children tested for HIV and for being molested by me. I still find that a crazy notion - I could never harm children - much less molest them, B#$%@ please.

Anyway, the fears began to subside over the next month or so. It helped me realize just how frail I am - how all of life is. What was one of my worst fears has become one of my most liberating & life changing experiences of my entire life. It actually gave me a new hope and a new lease on life.

Oh, sure, there are millions of uneducated people in the world and folks that hate what they don't know or fear. Youíll find that in every aspect and walk of life. They can change, given time.

But what I'm finding that does not change is my renewed vigor and thirst for life. I'm 50 now. I find I can't get enough of learning and loving and laughing - a trillion times more than when I first learned of my condition.

Don't see it as a death sentence. It's just a chronic, manageable condition. Do what you must for exercise. But keep an eye on your counts and health. Even though your counts are good, I find the disease does other things to me beyond weaken my immune system.

Educate yourself. FORGIVE yourself. Find new ways to love and appreciate living, life, and you. You're worth it. Being an HIV survivor is no different than a life-time of allergies - manageable while at times just inconvenient.
_________________________
If you can't take a joke, you need a nap. Me.

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#427576 - 03/09/13 12:57 PM Re: coming to terms with being HIV+ [Re: duncanUK]
Lancer Offline
Member
MaleSurvivor

Registered: 07/13/12
Posts: 901
Loc: Florida
Hey Duncan --

HIV and CSA. Welcome to the club (a long read, but wtf):
http://www.malesurvivor.org/board/ubbthreads.php?ubb=showflat&Number=427314&page=1

PM me any time. At 20+ years, I suppose I'm one of those "long term progressors". imo, though yes, the cycling helps physically and mentally (used to be a runner, one of those who'd cry uncontrollably after a 5K or 10K), it's not a panacea.

My two cents'. Take what you like...or none of it ;-)

Your CD4s are like an alarm system that alerts the CD8 cells (police, essentially) to respond to infection. Normal is 500-1600 or about 40% of your lymphocytes. HIV disables/destroys the alarm system and there's reduced immune response to infection. HIV doesn't care if you're a marathoner or if you sit on your fat bum eating crumpets! laugh

First line of defense is to disable or destroy the HIV "bad guys". Your viral load is an indication of how many bad guys there are. Ideal is "undetectable" which only indicates the limits of the screening system. Current limitation is about 50 copies per cubic mm of blood. A newer assay gets it down to about 5 copies. A more reliable indicator is the CD4%, less subject to short term variations. Breakpoint is about 17%.

Typically, my barometer has been based on how I feel instead of the numbers. But my numbers got really bad, the evidence being the number of infections (fungal, shingles, etc.) and increasing fatigue.

I can't speak for the UK, but the CDC here likes to see HAART (highly active antiretroviral treatment) start at a count of 350 and, at the latest, a CD count of 200. Ugh...I started a protocol this year at 33 and 2.4%. But I'm now undetectable and the CD4 is rising, slowly.

And, y'know Duncan, it's just information to have. If you want someone's unsolicited (probably useless and patronizing) opinion, ask your auntie! (No offense; she's probably a delightful woman). Naturally, if you're not feeling any adverse effects yet, I can understand why you'd be reluctant to start meds. If you're inclined - lol...probably not! - you might want to find out what your HIV genome is and options for treatment when/if the time comes. Mine is a once daily combination therapy and I had only mild, temporary side effects that lasted a few weeks. Trick was to become completely obsessive about sticking to my dosing schedule - hell, after years of working to overcome OCD? wtf? - and not missing even a single one. smirk

Repeatedly starting/stopping any treatment, however, is a bad idea. HIV becomes resistant more quickly. Put another way, it's best if you're either in or out. A case where all-or-nothing is actually a GOOD thing.

One inexpensive, clinically-proven alternative is Selenium (200 mcg):
http://news.bbc.co.uk/2/hi/health/6623631.stm

I've used it for years, since the study was published, along with the usual multivitamin routine.


Love the Hellraiser puzzle box, btw

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#432210 - 04/23/13 07:37 PM " [Re: Navi7]
lbcali1978 Offline
Member
MaleSurvivor

Registered: 02/16/12
Posts: 217
"


Edited by lbcali1978 (04/29/13 01:11 AM)
_________________________
They said

Come home

I said

I'm confused and alone

They said

We understand

I found out they don't

I'll walk the path exactly how I've always done it

Alone

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#432211 - 04/23/13 07:45 PM " [Re: duncanUK]
lbcali1978 Offline
Member
MaleSurvivor

Registered: 02/16/12
Posts: 217
"


Edited by lbcali1978 (04/29/13 01:12 AM)
_________________________
They said

Come home

I said

I'm confused and alone

They said

We understand

I found out they don't

I'll walk the path exactly how I've always done it

Alone

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#437177 - 06/06/13 11:35 PM Re: " [Re: duncanUK]
Davoice Offline


Registered: 05/10/13
Posts: 19
Loc: Western, New York
I am 31yrs poz and csa survivor I have struggled and by the grace of god I am still standing You can live with this as you have lived through the csa. if I can you can I was molested and my attacker gave me this disease I was 12 years old. I have gone through the gambit of emotions and caught F.I.S pardon my Language fis stans for "Fuck It Syndrom" when it can cam to my Hiv. but someone told me this "you cannot die from something until you learn to live with it ". it wasnt even called HIV yet when I was Diagnosed so if I am still her guess what ? there is hope for you keep plugging away and dont give up hope I am here for you if you need me



James

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