Author Topic: Undetectable for the first time in 23 years!!! (Read 6586 times)

LTSurviver · « **on:** March 06, 2009, 05:46:33 pm »

I just had to share my good news!

As you may know, I have been poz for almost 23 years. Well, I was a low CD4 count LTNP until late last year. My CD4 count was always just under 200 since the 80s and a VL over 100,000 ever since they could do that test.

I finally choose to start meds in Nov after a couple years of near constant illnesses and then finally a bout with Meningitis and an extended ICU stay. I also found that my CD4 had dipped to a record low of 128. That was low for me since it had always hovered around 180.

Well, my last labs were: CD4 in the 380s and a VL that is undetectable!!!

So,
Nov: CD4 128 VL over 100,000
Dec: CD4 280s VL 300
Feb: CD4 380s VL undetectable

And the best news is this: Besides some weird but very minor skin issues and a bit of fatigue, I have no side effects from the Truvada/Viramune now. The first 8 weeks or so were hell but all that seems to have faded. My Kidney and Liver counts are normal. And later this month we are FINALLY doing some baseline Lipid and Bone Density tests. I had to beat my docs over the head to track these. I wonder why?

Now my hopes are to get my CD4 count well over 500. I think it just may be possible.

Maybe over 1000?

A big thank you to those who helped me get through the first 8 weeks. You know who you are.

Nashvegas · « **Reply #1 on:** March 06, 2009, 06:40:21 pm »

That's AWESOME! And pretty amazing that your CD4 count have climbed so quickly after being down for so long. Congrats!!

Miss Philicia · « **Reply #2 on:** March 06, 2009, 06:48:26 pm »

Quote from: LTSurviver on March 06, 2009, 05:46:33 pm

I was a low CD4 count LTNP until late last year. My CD4 count was always just under 200 since the 80s and a VL over 100,000 ever since they could do that test.

First, congrats -- it took me 13 years on meds to get to undetectable.

That said, in the portion I quoted, was that a typo? Maybe you've explained this elsewhere but AFAIK that's not the technical definition of LTNP, though you may personally be defining that way as in your mind you didn't get sick until recently. Am I misreading something?

LTSurviver · « **Reply #3 on:** March 06, 2009, 06:54:48 pm »

I know it's not technically correct, but I was a Long Term non-progresser from the initial damage it caused back in the 80s. My CD4 count stayed around 180 for 20+ years. That's KINDA not progressing, right? So many had their CD4 counts drop to 0 and get sick, while mine hovered just high enough to keep me healthy.

I don't know how or why it was like that in me. But by the time HAART came out in 97 I had been poz for 10 years, figured why change a good thing and never started the drugs. I figured if I wasn't sick, why risk the side effects.

That all changed for some reason a couple years ago when I started getting sick all the time. No real ARCs with the exceptiopn of the shingles, just never ending colds, flus and sinus infections.

And then came the meningitis and almost dying. I figured it was time.

BT65 · « **Reply #4 on:** March 06, 2009, 06:58:07 pm »

Big congrats.

Catman · « **Reply #5 on:** March 06, 2009, 07:48:17 pm »

I'm glad for you. It is a very special moment for every hiv + person, but especially us long term survivors who have been around since the 80's and have never been "undetectable" until recently. It took me about 20 years also to get my vl below 50. No medication I took over the years reduced significantly my vl except those awful shots of Fuzeon with Aptivus and Norvir. Even though it is a mind relaxer to know I'm undetectable, the "happy about it issue" has gone away because I am so tired of these daily shots twice a day which have become painfull on occasions. I am tired of the med routine but if that's the price to maintain myself "undetectable" I'll haul along as best as I can... $:-\$

You are lucky to become "undetectable" on pills only. I wish I had that result on pills only!

Miss Philicia · « **Reply #6 on:** March 06, 2009, 07:55:20 pm »

Quote from: LTSurviver on March 06, 2009, 06:54:48 pm

I know it's not technically correct, but I was a Long Term non-progresser from the initial damage it caused back in the 80s. My CD4 count stayed around 180 for 20+ years. That's KINDA not progressing, right? So many had their CD4 counts drop to 0 and get sick, while mine hovered just high enough to keep me healthy.

Your case is definitely interesting. Can't say I would have made the same decision, and I've been infected for 20 years and my cd4 didn't go lower than 180, but whatever.

I'd still be careful labeling yourself an LTNP for the purposes of this board and public consumption as it's just going to confuse our members here who are new to the information. You definitely "progressed" to AIDS, you just didn't "progress" to a coffin.

But again, I'm very, very happy for you

I hope you've celebrated somehow today.

J.R.E. · « **Reply #7 on:** March 06, 2009, 08:42:00 pm »

That's great news !! Congratulations

Ray

Assurbanipal · « **Reply #8 on:** March 06, 2009, 08:56:29 pm »

That is spectacular! Congratulations.

sanitex · « **Reply #9 on:** March 06, 2009, 10:44:54 pm »

good news, wishing you more recoveryand congrats

LTSurviver · « **Reply #10 on:** March 06, 2009, 11:19:27 pm »

Quote from: Miss Philicia on March 06, 2009, 07:55:20 pm

Your case is definitely interesting. Can't say I would have made the same decision, and I've been infected for 20 years and my cd4 didn't go lower than 180, but whatever.

I'd still be careful labeling yourself an LTNP for the purposes of this board and public consumption as it's just going to confuse our members here who are new to the information. You definitely "progressed" to AIDS, you just didn't "progress" to a coffin.

But again, I'm very, very happy for you I hope you've celebrated somehow today.

Thank you.

I did celebrate. I went out for a very nice dinner.

It's funny... people oppose me saying I'm an LTS because I never had to take the drugs until now. And they oppose me saying LTNP because I did fall below 200 t-cells.

I guess I'm a man without a label. My body was able to keep the virus at bay but only by so much. And only for so long. I guess aging was probably the biggest factor in why it finally caught up with me.

Either way, I count myself very fortunate in more ways than one. My only hope now is for no long term bad side effects from the meds I'm on... Oh, and a cure.

clsoca · « **Reply #11 on:** March 07, 2009, 02:19:59 pm »

Wow...congratulations and big sexy hug to you.

Your an LTS in my book. This is not a time to get technical. You did a great job in rehabilitating your numbers.

LTSurviver · « **Reply #12 on:** March 07, 2009, 03:46:06 pm »

Thank you clsoca.

With the exception of the fatigue, I'm feeling great. But I've noticed something weird: Having an immune system means inflammation like I've never had before. My sinuses always were a little problem, but now if they get bad my whole face puffs up. LOL!!! Had that happen with a cold I got last month. It was all new to me and now I know what people talk about when they talk about sinus pressure and pain. I used to just have drainage and cold like symptoms when my sinuses were bad but never swelling, pressure and pain.

Oh well, it's like having a whole new body I have to get used to now. Strange for someone in their 40s.

Miss Philicia · « **Reply #13 on:** March 07, 2009, 07:27:06 pm »

LTS, that is probably just what they call "immune reconstitution syndrome" and over time once your body adjusts you hopefully won't be experiencing all that. It's actually nothing strange.

jampdx · « **Reply #14 on:** March 07, 2009, 08:18:36 pm »

That is so amazing. Congratulations

red_Dragon888 · « **Reply #15 on:** March 08, 2009, 10:21:20 am »

Congrats...

jm · « **Reply #16 on:** December 04, 2009, 12:40:21 pm »

Hi there,

Was just reading through your posts about your initial numbness issues with your meds, and was wondering if you are still taking Truvada and if you've had any more numbness issues since then.

I just started Truvada and Isentress 6 weeks ago and have some pins and needles/numbness issues in both feet/legs and hands/arms. No pain so far, but the numbness drives me crazy, much due to worries that it could get worse.

Thx.

JM

bmancanfly · « **Reply #17 on:** December 04, 2009, 03:40:24 pm »

Best wishes on continued success.

I'm on the same meds - two years undetectable.

max123 · « **Reply #18 on:** December 04, 2009, 08:44:43 pm »

hey that's really great news.

Ann · « **Reply #19 on:** December 04, 2009, 10:47:17 pm »

Quote from: jm on December 04, 2009, 12:40:21 pm

Hi there,

Was just reading through your posts about your initial numbness issues with your meds, and was wondering if you are still taking Truvada and if you've had any more numbness issues since then.

I just started Truvada and Isentress 6 weeks ago and have some pins and needles/numbness issues in both feet/legs and hands/arms. No pain so far, but the numbness drives me crazy, much due to worries that it could get worse.

Thx.

JM

Hi JM, welcome to the forums. I'd like to suggest that you start your own thread in the Treatment and Side-effect Forum where you're sure to get some responses. Your questions have been lost in this thread. To start a new thread in any forum, look for the "new topic" button on the top right-hand side of each main forum index page. Or just click here to find a page ready for you to write your new topic in the Treatment forum.

Ann

tednlou2 · « **Reply #20 on:** December 05, 2009, 01:09:28 am »

Wow! I read that right--you didn't start any meds until 23 years into infection? That is the big decision for people who maintain "good" numbers for years. I've had 2 docs tell me to start meds and 2 tell me I should wait because I don't need them yet.

It is a huge decision--especially after reading so much about unseen damage HIV is doing even if ya have good numbers. I'm glad to hear your liver and kidneys are normal. Kidney damage is one of the biggest things I've read about with untreated HIV. Well, heart issues and anal and other cancers too.

It is so interesting how this virus works in different people. Some progress so slowly and others need meds immediately. I guess it all comes down to genes--and how vicious the virus is.

Good Luck! And, stay in touch and let everyone know how things go over the next few years.

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Author Topic: Undetectable for the first time in 23 years!!! (Read 6586 times)