Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
July 22, 2014, 10:19:42 PM

Login with username, password and session length


Members
Stats
  • Total Posts: 631513
  • Total Topics: 47804
  • Online Today: 279
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: My experience - feedback appreciated  (Read 2342 times)

0 Members and 1 Guest are viewing this topic.

Offline MTanic

  • Member
  • Posts: 21
My experience - feedback appreciated
« on: September 19, 2012, 08:38:18 PM »
Hello everybody...

Before I tested positive, I was all my life very skinny (1.85m tall, 60kg), had skin problems and every flu that came around "got me". And everybody thought I had AIDS. Then during the first months of 2007 I gained 30kg in 6 months, just like that, and my skin problems receded a bit and my immunity was much better and sttronger...

Then on november 30th 2007 I was diagnosed with HIV (yeah I know, bummer to learn it one day before the international day :D). THe following ten days were filled with drawing blood and re-testing, and all tests (including western blott) turned out positive. My first CD4 count was 614, and since I didn't have insurance back then (and wasn't actually a citizen of Serbia, despite having lived here for 6 years at that time), they told me it's all right, no meds needed, and I was supposed to come as soon as I had insurance so we could do further monitoring. The doctor said back then she thinks I contracted the virus in 2002. (Because I didn't know)
Exactly one year and a month passed. I didn't use any meds of course, except that my mother forced me to take "Ecomer" (that's a pill supposedly made with liverextract of sharks, who as we know have strong immunity), an immunity-booster... in december 2008 I finally went to the doctor again. We did HIV-testing again (positive), and the CD4 count was 1064. Before we knew that, my doctor thought I needed to go on therapy, because I told her my feet hurt in the morning and she thought it's HIV-related neuropathy. But since the CD4 turned out like it did, she said it's nothing (and it was just my body not being used to the weight). Just one side note: Here in Serbia they don't do viral load tests before you go on therapy.

The next test we did in june 2009. The CD4 was 1080 something. I was perplexed. And whenever I go to the doctor, there are a lot of sick people, and whoever asks me about the CD4 and I tell them, they ask if it's that high because of the treatment, and when I say I'm not on treatment they look at me like I'm an alien.

In december 2009 we did a new CD4 count... 980.

And then for 2,5 years I didn't do anything, because the clinic here in Belgrade even didn't do it, they had some problems with the machines... and now two weeks ago, almost five years since the diagnosis, we did it again and the CD4 count is 1080.

That means five years of constant CD4 count of around 1000 without any treatment. Now I've literarly forced my doctor to do the viral load test and I'm waiting for the result (expected in about two weeks)... and I don't know what to think anymore.

Whomever I talk to, especially people who are living with HIV for years, they all look at me like I'm kidding and messing with them, because everybody seems to be on meds.

Now what do you guys think? But seriously, because this is really tripping me up now. :) I'm not saying I'm not happy - far from it, but it is strange, isn't it?

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: My experience - feedback appreciated
« Reply #1 on: September 19, 2012, 09:21:11 PM »
Welcome to the forums!

We have MANY long term slow progressors AND long term non-progressors on this forum. One of our moderators, Ann, has only been on meds for a short time, and she's been positive for over a decade, I think.

There are several studies currently underway to track long term slow/nonprogressors. One in the USA is monitored by the Zephyr Foundation. The website is here:

http://www.zephyrfoundation.org/

While it would be great to get a viral load test, your CD4s look terrific. Do you know your percentage? Regardless, it might be years before there is a medical need for meds - and you might be one of the lucky few who never need them. We call these people "elite controllers."

Of course, with a detectable viral load, you are, of course, infectious. Some people start meds in order to reduce (virtually eliminate) the chance of infecting their negative partners.



"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Ann

  • Administrator
  • Member
  • Posts: 28,134
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: My experience - feedback appreciated
« Reply #2 on: September 20, 2012, 10:18:06 AM »
Hi MTanic, welcome to the forums.

I agree with Jonathan - it sounds like you're either a long-term slow-progressor or long-term non-progressor. I'm leaning towards you being a non-progressor, because your CD4s are so high.

I'm the long-term slow-progressor he spoke of - I've been poz since 1997 (fifteen years) but I only went on meds about ten weeks ago. My numbers were always good, but never as high as yours and they started a slow decline two or three years ago. My CD4s were in the 300-400 (with the occasional foray just above 500), but previously they'd been in the 500s-700s or so. Can't remember exactly without looking it up, but you get the idea.

Let us know what your VL results turn out to be. While you're definitely hiv positive, it's possible that your VL result will come back undetectable, or very, very low (like under 2,000 or so). This would add weight to the idea that you're a long-term non-progressor.

Keep us posted! :)

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline mecch

  • Member
  • Posts: 11,211
  • red pill? or blue pill?
Re: My experience - feedback appreciated
« Reply #3 on: September 20, 2012, 04:54:41 PM »
Why are Serbians so shocked about your experience?  Non-progressors have been known for decades. Hopefully you are one, and as a bonus you can tell people about that.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline MTanic

  • Member
  • Posts: 21
Re: My experience - feedback appreciated
« Reply #4 on: September 25, 2012, 07:40:33 PM »
Why are Serbians so shocked about your experience?  Non-progressors have been known for decades. Hopefully you are one, and as a bonus you can tell people about that.

They're shocked because I didn't meet anybody with such a condition like mine. I might be even the only patient here who has such a long-term high CD4 count and not needing meds.

Anyhow...

I got my VL result... and it's around 5000 something (the nurse didn't tell me exactly on the phone)... now the nurse sounded concerned (and told me I should se my doctor), though my physician had told me the VL would mean nothing, because my Cd4 is that high... so when I hung up the phone I was perplexed why the nurse is worried and tells me I need to see my doctor... and then I remembered we don't do VL here unless on treatment and she thought my treatment doesn't work and blah blah (until today, I didn't even know that the viral load is valued differently for people on treatment and for those not on treatment, concerning whas is though of as a low viral load). So I called my doctor directly and she told me that's it and a result of 5000 for a patient not on meds is fabulous. Actually, anything below 50.000 copies is low, she said, and she had expected it to be between 20.000 and 30.000, but having 5000 with no treatment after five years of havnig discovered it is really, really great, she says. On thursday I'm gonna meet her and see what the CD4 percentage was....

So, what do you guys say?

Thanks!

Offline tednlou2

  • Member
  • Posts: 4,758
Re: My experience - feedback appreciated
« Reply #5 on: September 26, 2012, 12:02:31 AM »
It is great your CD4's are staying high.  It would be interesting to see the percentage.  I really don't think this is anything out of the norm.  Some progress fairly quickly, while others don't.   

I'm fairly confident I was infected in August of 2001.  I'm not on meds yet.  Since I was diagnosed in 2008, my CD4 has remained fairly stable in the high 600's to 700's.  My viral load is often less than 20k, but never higher than 28,000 (on a lab).  My CD4% is lower than what would be expected.  It fluctuates back and forth from lower 20's to high 20's.  I have no idea what my CD4's were like prior to 2008.  For all I know they were around 1,000.  If I would have gotten labs 5 years out, I may have been showing much higher CD4 readings.  Or, they may have been where they are now.   

I often get the same response from medical providers.  They assume with my CD4, I am on meds.  The bottom line and so I don't sound like I'm raining on your parade, it sounds like you're doing great and may not need meds for a long time, if you're not ready.  It is good that you have time to think about when the best time to start meds is for you. 

I can say that I fear that I've become too use to having HIV and not taking meds.  I tell myself that I should be thankful for the years I didn't have to take them.  But, I do worry it will be a huge blow, when my labs start heading south.  And, I also worry about the unseen damage HIV is doing and whether I've made a big mistake by not starting meds.  As I said, I'm 90% confident I just passed my 11th year of infection.  That begins to make me think about meds in a different way.  Well, I've thought about it a lot.  I am beginning to hear the clock ticking much more now.         

Offline eric48

  • Member
  • Posts: 1,112
  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
Re: My experience - feedback appreciated
« Reply #6 on: September 26, 2012, 01:21:31 AM »
Hi,

This situation in Serbia where VL is not usually performed is kind of different from standards in the US, etc.

One possible work around is to know that the only expensive and long lead time is the resistance test (ca $1000)

In most countries a VL AND CD4/CD8 will cost you about 100 USD (I think VL alone is ca $50) AND most importantly a doctor's prescription is NOT required. You can just walk in and get the test done. Here we get the result in 24h, 48 at max except if blood drawn on Fridays or Saturdays and you can get the results over secured internet

A hospital virologist of experienced doctor is not that expensive either.

In order to get your follow up as close as possible to the US , NHS published guidelines, one idea might be to get that done out of Serbia (getting out of serbia may be the most difficult part..)

If your VL is low on several test, and CD4 constantly high, once a year VL might be enough

Please also note that, at CD4 > 500, another key decision faction is age(if older) and C4/C8 ratio. if CD4% below 20, then it may be worthwhile to consider meds

Just a suggestion.

Eric



Offline MTanic

  • Member
  • Posts: 21
Re: My experience - feedback appreciated
« Reply #7 on: September 26, 2012, 06:29:02 AM »
@tednlou2: First, great avatar. I LOVE Wonder Woman.

My doctor is pretty confident I got infected in 2002, but I don't know.
And you're not raining on my parade, but as I said, here in Serbia people like me are rare - if there are any. And I fear sometimes, too, that I've gotten too used to live without meds. Because, as long as you don't take meds, it's like you have no problem whatsoever, right?

@eric48:

I'm not in the mood to relocate just because I wanna do VL on a regular basis. And you can't do the PCR in a private lab here, because the state clinics had a court order against private labs after they had issued false negative results to people, thus weighing in on their health problems which later occured...

Anyhow, a friend of mine, a virologist from Austria, told me she thinks my th1 is genetically high. Whatever THAT means. I'm meeting with my doc tomorrow and I'll get the percentage, too - they've been doing that one in Serbia only since recently ago... Then we'll know more. But I will consult with my doc about entering any possible research programm, because I feel I need to help to fight HIV and make it possible for as many people as possible to be as well of as I am.

Offline MTanic

  • Member
  • Posts: 21
Re: My experience - feedback appreciated
« Reply #8 on: September 27, 2012, 06:05:12 PM »
So, the CD4 percentage is 18 %, but my doc says nothing to worry there, since my general number of leukocytes is high, and that's the reason the absolute cd4 count is high... she thinks it's ridiculous to think about meds with a cd4 count of 1080, a vl of 5030 and cd4% at 18.

Here's my cd4 result with everything else on it (not the VL) - I blurred out my name, though I have no problem in disclosing it here, I didn't have time to check whether it is allowed to do that so I blurred it out just to be sure. :D



For a bigger pic, click here: http://oi47.tinypic.com/5ybuw5.jpg

Offline MTanic

  • Member
  • Posts: 21
Re: My experience - feedback appreciated
« Reply #9 on: September 27, 2012, 06:43:44 PM »
And what about allergies? I have many pollen allergies which plague me throughout the year and bring my immunity down - meaning make me tired and weak and susceptible to the flu from time to time... does that affect the VL and the cd4 percentage?

Offline mecch

  • Member
  • Posts: 11,211
  • red pill? or blue pill?
Re: My experience - feedback appreciated
« Reply #10 on: September 27, 2012, 08:10:50 PM »
@tednlou2: First, great avatar. I LOVE Wonder Woman.

My doctor is pretty confident I got infected in 2002, but I don't know.
And you're not raining on my parade, but as I said, here in Serbia people like me are rare - if there are any. And I fear sometimes, too, that I've gotten too used to live without meds. Because, as long as you don't take meds, it's like you have no problem whatsoever, right?

wrong.  Its nice not to have to deal with meds but don't fool yourself that you don't have HIV.  But yes, maybe having an HIV infection that never causes your body a problem, is not a problem.  For your body.... But it can be a problem socially and financially and in relationships.

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

  • Member
  • Posts: 11,211
  • red pill? or blue pill?
Re: My experience - feedback appreciated
« Reply #11 on: September 27, 2012, 08:16:01 PM »
So, the CD4 percentage is 18 %, but my doc says nothing to worry there, since my general number of leukocytes is high, and that's the reason the absolute cd4 count is high... she thinks it's ridiculous to think about meds with a cd4 count of 1080, a vl of 5030 and cd4% at 18.

Here's my cd4 result with everything else on it (not the VL) - I blurred out my name, though I have no problem in disclosing it here, I didn't have time to check whether it is allowed to do that so I blurred it out just to be sure. :D



For a bigger pic, click here: http://oi47.tinypic.com/5ybuw5.jpg

Hey your English is great! 

Be careful about using the mindset: that "it's ridiculous" to think about going on meds with your blood numbers.  Going on meds is not necessary with your numbers.  But it is never ridiculous to think about going on meds.  Even with your numbers, you do have an actif HIV infection. Its not as if you are a non-progressor with NO viral load, undetectable.  I have a buddy now who is often below 200 and not on meds....  He's an odd case too, because he's never been on meds and his viral load has gone down over the years.

Oh, what track was I on again?

Ok, yeah, - the "it's ridiculous".  Well, i think the thing to say is that HAART is unnecessary for your body. 

But you can think about the advantages and disadvantages of being on HAART versus being in your good shape, without HAART, and make your own mind what you want. 

Don't let the doctor tell you what is "ridiculous" or not.  If you wanted to make a baby, well then 5000 viral load is impossible and HAART is not ridiculous.  If you wanted to negotiate unprotected sex with a steady faithful partner, HAART wouldn't be ridiculous.

Or, maybe the "ridiculous" has to do with the financing of meds.  Maybe its "ridiculous" if there are limited resources.  Or the meds available in your country aren't ideal... Who knows. 

That's just a little bit of an odd word for a doctor to say.  In my humble opinion.

Anyway, congrats!
« Last Edit: September 27, 2012, 08:26:10 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline MTanic

  • Member
  • Posts: 21
Re: My experience - feedback appreciated
« Reply #12 on: September 27, 2012, 08:18:06 PM »
wrong.  Its nice not to have to deal with meds but don't fool yourself that you don't have HIV.  But yes, maybe having an HIV infection that never causes your body a problem, is not a problem.  For your body.... But it can be a problem socially and financially and in relationships.

It's not wrong, for your psyche (or mine) it IS like not having a problem. Therefore, you cope better with any other HIV-related non-medical problem. I for one have never had ANY problems related to HIV, I wasn't fired because of it, I didn't loose any friends over it and my relationships didn't suffer.
But I guess, at least concerning HIV, I've been just a damn lucky guy.

Offline MTanic

  • Member
  • Posts: 21
Re: My experience - feedback appreciated
« Reply #13 on: September 27, 2012, 08:30:12 PM »
@mecch:

Yeah I know about my english :D But thanks anyway.

And anyhow... the medicine is free here, but the pool from which we can draw here is not as big as abroad, if you know what I mean. My doc is one of those who likes to keep people off meds as long as she can, while the chief of the clinic would put everybody on meds immediately I think... and I don't like that. In my mind it's like having a cancer-patient on constant chemo - it's just not healthy. And I've read that the ARV-meds are toxic to the body as well as helping fight HIV...
And as for the VL - since we've never one a viral load for me, the number 5030 doesn't actually mean anything, because we know it can fluctuate from one test to another and have a threefold change in numbers... and that such changes can even occur for the same bloodsample if it's tested twice in a row... So who knows, maybe usually my VL is UD, but now it fluctuated - due to my allergy (which REALLY brings me way down with my physical status and stamina) or something else? And you shouldn't take the word "ridiculous" so seriously, she wanted to put me on meds back in 2008 when she thought I had neuropathy, but the CD4 was too good.

Anyhow, I have to see how I can get regular VL tests, since the clinic doesn't want to do them on people not on meds, and if I can get into touch with some research on LTNPs. I would do anything if my status can at least help other people in a promille.
Just waiting for the opinion of a friend of mine from Austria, who is a virologist... She said she thinks my "th1" is genetically high, but I have no clue what that is... yet.

Offline MTanic

  • Member
  • Posts: 21
Re: My experience - feedback appreciated
« Reply #14 on: September 27, 2012, 08:32:28 PM »
Oh and one more, I think important, thing:

The mindset plays in my humble opinion a HUGE role... I remember my first week of knowledge back in 2007, the chaos in my head, the sorrow, the fear, the shame... but I also remember having said (and the friend from Austria laughed at that, saying it's impossible) that it would NOT bring me down, that in the end, I would bring IT down... and I have been fighting it pretty well since then. :)

Offline karry

  • Member
  • Posts: 271
Re: My experience - feedback appreciated
« Reply #15 on: September 28, 2012, 07:15:04 AM »
Hi
I was diagnosed February 2007 and my initial CD4 was around 400 vl undetectable. After that first "low" in my experience CD4 count my CD4s have never gone below 700. They hover between 750-980. VL max has been about 200 which my doc equates to undetectable.
I have never been on meds.
I try to do all healthy stuff (gym, eat right, no smoking etc). Regular checks with doc, dentist, gynaecologist etc. So far, no major health issues.
I think there's a number of people like us here on the forum.
Good health to you!
Karry
Take it a day at a time....and be positive about it too!

Offline mecch

  • Member
  • Posts: 11,211
  • red pill? or blue pill?
Re: My experience - feedback appreciated
« Reply #16 on: September 28, 2012, 09:15:43 AM »
It's not wrong, for your psyche (or mine) it IS like not having a problem. Therefore, you cope better with any other HIV-related non-medical problem. I for one have never had ANY problems related to HIV, I wasn't fired because of it, I didn't loose any friends over it and my relationships didn't suffer.
But I guess, at least concerning HIV, I've been just a damn lucky guy.
Ok finanlly we both meant the same thing, just expressed differently. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

  • Member
  • Posts: 11,211
  • red pill? or blue pill?
Re: My experience - feedback appreciated
« Reply #17 on: September 28, 2012, 09:21:09 AM »
@mecch:

the pool from which we can draw here is not as big as abroad, if you know what I mean. My doc is one of those who likes to keep people off meds as long as she can, while the chief of the clinic would put everybody on meds immediately I think... and I don't like that. In my mind it's like having a cancer-patient on constant chemo - it's just not healthy. And I've read that the ARV-meds are toxic to the body as well as helping fight HIV...

That is what I was referring to....  Not that the costs would come out of your pocket, but that the cost is factored in when some doctors have to figure out the best solution.  In my canton in Switzerland, doctors are still following the guidelines about being prudent about when to start, which coincidentally keeps the total cost of treating all HIV in the Candon lower. Whereas in Geneva the doctors are more inclined to offer treatment to everyone at diagnosis. Which collectively cost everyone more, of course. 
So I was just checking that your doc or your country wasn't say it was "ridiculous" to treat you with low viral loads because it isn't collectively cost effective.
Anyway, it seems you are more in the prudence mind-set about HAART, and good for you.
I read through the lines and suspected you might be worried about toxicity.  Eventually people make up their own minds about this because its a constantly evolving situation for everyone, as the drugs are constantly evolving as well. And one person might get side effects while another none what soever.  You don't have to be convinced that HAART isn't necessarily toxic, since you dont need HAART anyway.  But eventually you might want to dial down that belief.
« Last Edit: September 28, 2012, 09:23:36 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

  • Member
  • Posts: 11,211
  • red pill? or blue pill?
Re: My experience - feedback appreciated
« Reply #18 on: September 28, 2012, 09:27:25 AM »
Oh and one more, I think important, thing:

The mindset plays in my humble opinion a HUGE role... I remember my first week of knowledge back in 2007, the chaos in my head, the sorrow, the fear, the shame... but I also remember having said (and the friend from Austria laughed at that, saying it's impossible) that it would NOT bring me down, that in the end, I would bring IT down... and I have been fighting it pretty well since then. :)

This also, is entirely up to you.  However please be careful to understand that many of us have come to the conclusion that the way a person's immune system deals with HIV progression is 100% crap shoot, based on genetics.  And has nothing whatsoever to do with mindset, strength, spiritual powers or beliefs, etc etc etc.   

So while you can believe your amazing immune response is a result of mind over disease, please NEVER ever make the reverse judgement about another person's experience with HIV.  OK?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline MTanic

  • Member
  • Posts: 21
Re: My experience - feedback appreciated
« Reply #19 on: September 28, 2012, 02:36:27 PM »
Well of course not, I can only talk about my own experience, and if somebody can draw some conclusion off it for themselves - even better. But again you seem to have misunderstood me - I never said "mind over disease", I just pointed out that the mindset plays a huge role in our health alltogether - it's not a coincidence that one of the first advices you get after diagnosis is to stay off stress. Stress weakens a person and then you get easily ill - and I had that experience myself, that mental stuff influences my health in a bad way. So you have to stay strong in that area anyway.

As for the toxicity... that's only ONE of my concerns - why poison the body if I don't absolutely have to? I didn't say I'm against HAART per se, I'm just against dealing it out like candy.

And one more thing... here in Serbia you can't make the doctor give you meds - it's up to them to decide... of course, you can choose NOT to take the meds, but the other way around... no. And people usually don't question doctors. LOL. But I have a very good communication with my doctor and I'm happy with her. And doctors here don't have concerns about the costs, they're pretty cool about it.

And on a side-note:
You're from Switzerland? I speak german, too - even better than english ;)

Offline mecch

  • Member
  • Posts: 11,211
  • red pill? or blue pill?
Re: My experience - feedback appreciated
« Reply #20 on: September 28, 2012, 06:27:03 PM »
No I'm a yankee and moved to CH quite a while ago. My german is extremely basic. I live in the French speaking part.

« Last Edit: September 28, 2012, 06:29:44 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline weasel

  • Member
  • Posts: 1,629
Re: My experience - feedback appreciated
« Reply #21 on: September 28, 2012, 08:17:26 PM »
Hi MTanic,

                     Pleased to meet you  :)

    You sound great , Nice numbers .

    I went for many years  with HIV  without needing meds or even ever being ill .
   I am aware of several people that have gone almost 20 years before needing meds .
    Good to know where you stand  , you will be able to not pass on HIV to fellow mates .
   I have been on HAART for 7 plus years now , I feel good .
 
                                           Hope to hear more ,
                                                             Weasel
" Live and let Live "

Offline spacebarsux

  • Member
  • Posts: 1,350
  • Survival of the Fittest
Re: My experience - feedback appreciated
« Reply #22 on: September 29, 2012, 01:02:28 AM »
Hey, not much to really add except that perhaps it wouldn't be a bad idea to find out your VL (even if it means paying for it once) to know where you stand in terms of your body's handle on the virus.  :)

Great numbers.
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline MTanic

  • Member
  • Posts: 21
Re: My experience - feedback appreciated
« Reply #23 on: September 29, 2012, 07:32:55 PM »
Hey, not much to really add except that perhaps it wouldn't be a bad idea to find out your VL (even if it means paying for it once) to know where you stand in terms of your body's handle on the virus.  :)

Great numbers.

I wrote it up there - the VL is 5030 :)
But I HAVE TO make them do it regularly so I can follow what the virus does... too bad I can't do that in some private practice, but I will get the to do it somehow...
Stupid head of clinic with his stupid fixation on meds and how they work... he bluntly says the VL is not important unless you're on meds!  >:(

@mecch:

I feel you, lol.

Offline Ann

  • Administrator
  • Member
  • Posts: 28,134
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: My experience - feedback appreciated
« Reply #24 on: September 30, 2012, 07:44:35 AM »

Stupid head of clinic with his stupid fixation on meds and how they work... he bluntly says the VL is not important unless you're on meds!  >:(


Well, the doctor isn't entirely wrong. When you're not on meds, the more important number is the CD4 and when you are on meds, the more important number is the VL.

HOWEVER - that doesn't mean they're not both important numbers, on or off meds. One just takes precedent over the other depending on if you're on meds or not.

I don't blame you for wanting to track your VL - at least once or twice a year - while you're not on meds. I would want the same. I hope you can manage to have this done - good luck!
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline MTanic

  • Member
  • Posts: 21
Re: My experience - feedback appreciated
« Reply #25 on: September 30, 2012, 07:40:25 PM »
Well, the doctor isn't entirely wrong. When you're not on meds, the more important number is the CD4 and when you are on meds, the more important number is the VL.

HOWEVER - that doesn't mean they're not both important numbers, on or off meds. One just takes precedent over the other depending on if you're on meds or not.

I don't blame you for wanting to track your VL - at least once or twice a year - while you're not on meds. I would want the same. I hope you can manage to have this done - good luck!

I will do somehow.
Why do I think it's important to track the VL during the off-meds-periods, too? ESPECIALLY in people like me who have constantly high cd4-numbers? Well, to be able to track down LTNPs and elite controllers! I mean, don't get me wrong, I have in no way a "messiah complex", but I DO have the need to help other people in any way I can, and If my good condition can contribute to solving the mystery why some immune systems fight better than others, then please draw my blood every effing day! I see the fact that my numbers stay that good as a gift, but one which is worthless if not shared, therefore I joined one group, to share the positive feeling (no pun intended), and I am about to join some other organizations to reach out to people who don't feel that well, especially concerning their mental state and accepting the fact that they have to live with HIV and not lie down and just die.

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.