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Author Topic: wondering about my future...  (Read 1955 times)

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Offline JungleJungle

  • Member
  • Posts: 41
wondering about my future...
« on: August 22, 2013, 09:09:18 AM »
First of all i want to cheer all the forum members.
I am sorry if sometimes my English should sound horrible, but English is not my Language.

I got my diagnosis just one month ago...been negative since 05/2011...positive since 07/2013
When i got notified about my status i felt surprised but tried to fight back rationally.
I expected to be a Young naive poz man with many years ahead without needing any treatment as it was supposed that i am infected for no more than 1+1/2 years...
So two week ago the local HIV medical center checked my health hiv-related condition...and i was upset for the second time in just one month...
Meanwhile the doctor said my genotype is a wild type F1, that basically means i should be treated with any drugs available (no known resistances, so i should consider myself "lucky") ...also appears that my CD4 count is at 381 and my C8 at 881, my Viral Load being 36.276...
It means THERAPY...the doctor said next month another specialist will be my counsellor and plan with me my long-life drug regimen...
I feel a bit angry and confused...even if i was never assuming to be an elite controller or so lucky to be a long term suppressor...yet i was pretty sure i would have had a few years more before starting my therapy...
How is it possible my body is so sensitive to the HIV that my CD4 count got so low in just 18 months?
I am wondering about my future now...
You need coolin', baby, I'm not foolin',
I'm gonna send you back to schoolin',
Way down inside honey, you need it,
I'm gonna give you my love,
I'm gonna give you my love.

Offline Jeff G

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  • Member
  • Posts: 11,361
  • How am I doing Beren ?
Re: wondering about my future...
« Reply #1 on: August 22, 2013, 09:16:44 AM »
Welcome to the Forums . Some people fare better than others with untreated HIV as you know . The important thing to remember is there are treatments that will be right for you and your future is a bright one . I have lived for over 30 years with HIV and you cant too .

Im sure others will have some insight into your situation and offer their experiences as well . You are going to be OK .   

Offline JungleJungle

  • Member
  • Posts: 41
Re: wondering about my future...
« Reply #2 on: August 22, 2013, 11:08:30 AM »
Welcome to the Forums . Some people fare better than others with untreated HIV as you know . The important thing to remember is there are treatments that will be right for you and your future is a bright one . I have lived for over 30 years with HIV and you cant too .

Im sure others will have some insight into your situation and offer their experiences as well . You are going to be OK .

thank you...i hope so.  :)
You need coolin', baby, I'm not foolin',
I'm gonna send you back to schoolin',
Way down inside honey, you need it,
I'm gonna give you my love,
I'm gonna give you my love.

Offline tednlou2

  • Member
  • Posts: 4,836
Re: wondering about my future...
« Reply #3 on: August 22, 2013, 11:46:24 PM »
Do you have any idea when you were infected?  Is it possible you were diagnosed, while still in acute infection?  Your viral load would be expected to be higher, during acute infection, but not everyone is the same. 

Offline leatherman

  • Member
  • Posts: 6,145
  • Google and HIV meds are Your Friends
Re: wondering about my future...
« Reply #4 on: August 23, 2013, 12:10:31 AM »
welcome. sorry you had to find us; but glad you found us ;)

I expected to be a Young naive poz man with many years ahead without needing any treatment
i don't know if it's a language issue; but you were right about something you wrote here. You are naive. I don't mean that in a bad way though. You were naive about just what being HIV poz means physically and that it doesn't always take years before meds. There's nothing wrong with being naive about a disease you didn't have.  ;)

you might want to read through the LESSONS section here. it's filled with all sorts of information about HIV, the tests, and the meds
http://www.aidsmeds.com/articles/Introduction_4702.shtml

It means THERAPY...the doctor said next month another specialist will be my counsellor and plan with me my long-life drug regimen...

I feel a bit angry and confused ...yet i was pretty sure i would have had a few years more before starting my therapy.
maybe it's the language issue here; but you were quite right in typing "long life" not "life long". The meds ARE your friends (say that every day until you mean it! LOL). People of all ages around the world take daily meds for all sorts of illness and problems - you're no different from them. don't think of the meds as something awful that you wanted to wait years to take. Think of them as the only thing possible that fights HIV and will keep you healthy and happy and able to live out a "normal" life span.

I've been taking HIV meds for 21 yrs now, and you won't here me bad-mouthing them, that's for sure. they have kept me alive and made me healthy  ;) After you've started the meds and been on them for a couple weeks, you'll probably look back at this time and wonder why you ever felt negative feelings about the meds. ;D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline JungleJungle

  • Member
  • Posts: 41
Re: wondering about my future...
« Reply #5 on: August 23, 2013, 04:04:36 AM »
First of all thank you for being so supportive.
Really it was a language issue that lead to a bit misunderstanding about my concerns...
No way i have bad feelings toward meds, but being myself an helthcare employee (to be more generic as possible about my privacy  :) ) i am aware about what a life-long treatment means (not a long-life LOL, sorry) in term of benefits for my health but i can't forget there are also negative issues.
I don't want to seem thankless/ingrate, in fact i am aware drugs will save my life & take all the pieces together in the right place again.
The point was that i am worried about how quick my defenses are getting low, but my doctor said everyone's body reaction is different to the virus.
Now i can't wait to begin my treatment because i am scared as hell about opportunistic infection, mainly Tubercolosis as i have many risk factors involved...
You need coolin', baby, I'm not foolin',
I'm gonna send you back to schoolin',
Way down inside honey, you need it,
I'm gonna give you my love,
I'm gonna give you my love.

Offline JungleJungle

  • Member
  • Posts: 41
Re: wondering about my future...
« Reply #6 on: August 23, 2013, 04:10:00 AM »
Do you have any idea when you were infected?  Is it possible you were diagnosed, while still in acute infection?  Your viral load would be expected to be higher, during acute infection, but not everyone is the same.

I guess it happened at the beginning of  2012, because i remember i got a VERY STRONG "Flu" with high fever and vomit that lasted only a few days but was acute as hell and seemed weird to me, but i didn't think about getting tested... :(
You need coolin', baby, I'm not foolin',
I'm gonna send you back to schoolin',
Way down inside honey, you need it,
I'm gonna give you my love,
I'm gonna give you my love.

Offline mecch

  • Member
  • Posts: 11,490
  • red pill? or blue pill?
Re: wondering about my future...
« Reply #7 on: August 23, 2013, 06:28:33 AM »
First of all i want to cheer all the forum members.
I am sorry if sometimes my English should sound horrible, but English is not my Language.

I got my diagnosis just one month ago...been negative since 05/2011...positive since 07/2013
it as it was supposed that i am infected for no more than 1+1/2 years...

.also appears that my CD4 count is at 381 and my C8 at 881, my Viral Load being 36.276...


Hi, welcome to the forum.

Stop his fixation on your immune defense being poor and your number so "low".  Could've Shoud've Would've.

Its good that you have identified your infection.  Its pretty good that your last HIV NEG test wasnt so long ago, and you caught your infection early enough.   You don't know your CD4 number from BEFORE infection, so you can't judge the current one all that well. The current numbers don't qualify for treatment in some countries, you know.  Anyway, its not all that bad for going forward.   

This whole thing about how long an HIV+ person goes without treatment is breaking down.  First of all, let me tell you something - your experience being HIV+ is YOUR INDIVIDUAL experience and since you seem to have good access to medical care, there are a lot of things about "general populations and trends" that really do not and will not apply to you...

Second, those estimates of time to drugs are just that - estimates, based on populations.  There isn't even all that much concern doing continued research on them, because there is no longer much incentive to keep people off HAART for as long as possible.  The current trend is to people beginning HAART at diagnosis,  or when they want to, or at 500, etc etc etc.    You see.... 

Once you are on HAART, there ail be many advantages, and you already know some of them.

Stop worrying and fussing about your "time to treatment" and your "immune response" because its conjecture and in the past, anyway, cause you are starting treatment. 

Also a little lesson for you.  I had a CRAP ASS bad immune response to HIV infection.  I needed treatment within months.  That made me think like you, be worried that i wasn't a strong biological being... weak immunity.  Ah NOT.  False.  In the trauma of the HIV diagnosis, I forgot about all the other infections i had successfully fought off in my life.  And since being HIV+, i  got and fought off another, very serious infection, HEP C, with my immune system alone.  And the doc said that was rare.  So my immune system is still a fighter.  Just couldn't fight HIV.  And this is probably a question of genetics...

So, face forward and have faith in your strong body, take your antivirals, and live your life...
« Last Edit: August 23, 2013, 06:37:14 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline JungleJungle

  • Member
  • Posts: 41
Re: wondering about my future...
« Reply #8 on: August 23, 2013, 07:28:42 AM »
Aye! I will! :) thank you and sorry if it seemed too negative, it's just that the way i was expressing my concerns in english matched as i was complaining...which i am not. All my life i've been a fighter (in the real term, being a pro athlete) so i'll face also this challenge...
Thank you again
You need coolin', baby, I'm not foolin',
I'm gonna send you back to schoolin',
Way down inside honey, you need it,
I'm gonna give you my love,
I'm gonna give you my love.

Offline mecch

  • Member
  • Posts: 11,490
  • red pill? or blue pill?
Re: wondering about my future...
« Reply #9 on: August 23, 2013, 07:34:16 AM »
No need to apologize for your anxiety.  Just giving you my two cents, dont worry and fuss over these matters.  Its not constructive going forward. 
Also congrats, your English is fine, completely understandable.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline wolfthorn

  • Member
  • Posts: 85
Re: wondering about my future...
« Reply #10 on: August 23, 2013, 10:05:50 PM »
I feel the same way, I'm 6 years from infection (the last time I got tested was during sero-conversion illness... I moved and changed doctors and never followed up  :o ).  I took a home oraquick because I was worried that I was getting weird infections in my mouth. When I went to the doctor, my CD4 ended up being less than 20 and vl was 290k! I could have gotten one of the scary things like PML or crypto and never even known it had I not just taken the test in my living room. I really didn't feel sick until a few months ago, and attributed it all to the mouth infection. My doctor was kind of shocked because he'd never had someone come in so compromised from a home test.

The numbers you read are all averages. Everyone's experiences are different.

So far I have had a big drop in viral load in a short period of time on therapy. With your numbers it doesn't seem like you're going to have trouble suppressing virus and building back, just stick to your treatment!

I know that because of my numbers I will have a sloooow recovery, but as long as they improve every month I'll keep my fingers crossed and keep on living.
7/10/13: Oraquick at Home (+)
7/11/13: CD4 <20, VL 286,000
7/26/13: Start Stribild, Bactrim, Azithromycin
8/13/13: CD4 64, VL 1194
9/11/13: CD4 87, VL 511
10/14/13: CD4 164, VL 34
10/15/13: Stop Azithromycin!

Offline wolfthorn

  • Member
  • Posts: 85
Re: wondering about my future...
« Reply #11 on: August 23, 2013, 10:13:07 PM »
my doctor said this to me and it was really reassuring:

"since you came to my office and asked for these tests, it's much different than a lot of people who come into the hospital attached to oxygen and machines and then get tested... the major thing that determines whether you get better is you taking the medications... so while you can't control having HIV, you are going to be the one who controls the HIV by taking the medications, and that will keep you healthy"
7/10/13: Oraquick at Home (+)
7/11/13: CD4 <20, VL 286,000
7/26/13: Start Stribild, Bactrim, Azithromycin
8/13/13: CD4 64, VL 1194
9/11/13: CD4 87, VL 511
10/14/13: CD4 164, VL 34
10/15/13: Stop Azithromycin!

Offline JungleJungle

  • Member
  • Posts: 41
Re: wondering about my future...
« Reply #12 on: August 24, 2013, 06:42:17 PM »
my doctor said this to me and it was really reassuring:

"since you came to my office and asked for these tests, it's much different than a lot of people who come into the hospital attached to oxygen and machines and then get tested... the major thing that determines whether you get better is you taking the medications... so while you can't control having HIV, you are going to be the one who controls the HIV by taking the medications, and that will keep you healthy"

That's a good point!
You need coolin', baby, I'm not foolin',
I'm gonna send you back to schoolin',
Way down inside honey, you need it,
I'm gonna give you my love,
I'm gonna give you my love.

 


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