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Author Topic: newbie  (Read 3511 times)

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Offline powerpuff

  • Member
  • Posts: 138
newbie
« on: August 01, 2007, 02:15:57 PM »
hi i'm pretty new.It sounds like most of the woman here are long term survivor's and didn't  know they were infected.
I knew right away a sinking feeling something wasn't right .if someone is symptomatic are they any of you out there ? did you go on meds right away?

Offline powerpuff

  • Member
  • Posts: 138
Re: newbie
« Reply #1 on: August 01, 2007, 02:17:14 PM »
a girlfriend of mine past away in seven years is that normal? it kind of freaks me out.

Offline Queen Tokelove

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  • Posts: 6,033
  • Smokey the Smurf
Re: newbie
« Reply #2 on: August 01, 2007, 02:23:09 PM »
Hey Puff,

Welcome to the Forums. All I can tell you is that this virus affects us all differently. You will see that as others post. Some will start meds right away depending on their numbers and some will wait. I, myself, is going on 10 years this year of having this virus and am not on any meds yet. Try not to freak out and do some reading here on the site in the other forums. One of our moderators here, Ann has links at the end of her posts that has information on them that I'm sure will be useful to you. Feel free to PM me if you got any questions or just want to vent, it wouldn't be a bother at all. One thing I will say, if you have any stress going on around you, try to get rid of it. Stress does a number on our immune systems. Keep us posted.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline powerpuff

  • Member
  • Posts: 138
Re: newbie
« Reply #3 on: August 01, 2007, 02:30:49 PM »
I still have strange symptoms , swollen glands , restless leg insomnia,
I think they might put me on meds right away if so that would make me a fast progressor , symptomatic right??
any one know. the meds should slow it down though for how long no one knows. does anyone know anyone dying right away from this disease or are people living more than 10 years the norm?? i hear diffennt things like its chronic blah blah...then sooo many people die of this surpassing the black plague blah blah
make up their minds >:(

Offline cjc

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  • Posts: 1,011
  • Sweet Girl
Re: newbie
« Reply #4 on: August 01, 2007, 03:26:43 PM »
Hello, Welcome to the forums. i was diagnosed in 2004 and started meds in 2005. Queen is correct, this virus affects everyone differently. There are very good lessons here on this site. Feel free to browse them. I found when I was first diagnosed that information made me feel better. Hope to hear more from you. Best of luck.  Cristy

Offline powerpuff

  • Member
  • Posts: 138
Re: newbie
« Reply #5 on: August 01, 2007, 03:43:08 PM »
thanks , is there anyone who had symptoms tested right away and gained control of the virus with meds for a couple of years?? is what i'm asking

Offline Queen Tokelove

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  • Posts: 6,033
  • Smokey the Smurf
Re: newbie
« Reply #6 on: August 01, 2007, 08:42:45 PM »
Puff~~

Then I am not sure what you are asking. There are plenty of people who has been living for over 20+ years with this virus.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline zachysmom

  • Member
  • Posts: 112
Re: newbie
« Reply #7 on: August 01, 2007, 10:22:00 PM »
Welcome,

First take a deep breath, it will all  be okay.'
I think you want to know if anyone who has been recently diagnosed, has had problems and passed away, at a fairly fast rate?
Well as Queen was saying, everyone is different.
The meds can be effective if you give them a try, just talk with your doctor, and see what they say.
 what are you experencing? Are you just worried about the future? or are you having problems right now?

either way don't be discouraged, we've come along way since the early 80's, there is a bright side.

keep us posted,
Nicole
From Russia with love,
Nicole

Offline Ann

  • Administrator
  • Member
  • Posts: 27,947
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: newbie
« Reply #8 on: August 02, 2007, 04:45:10 AM »
PP,

People aren't usually put on meds according to their symptoms. Meds are normally only considered when the numbers say they should be. What are your numbers like?

You can't go by just one set of numbers either. You need to get a few results under your belt so you can see what kind of trend, if any, you have.

One thing you have to realise - and Queen will attest to this - you might have great numbers but still have what I call "niggly" stuff going on. By that I mean symptoms of having hiv, but stuff that isn't serious enough to consider the meds for. The meds can bring their own problems.

If you haven't already, please check out the Lessons and read through the ones on what your  lab results mean as well as the ones on starting treatment. If you have more questions after reading, let us know.

And by the way, I just read through your posting history and no where do you mention your numbers. They are very important for you to know.

Also, in reading about your testing history, I'm wondering if you had your postitive result confirmed. If you haven't, you need to get to a doctor and have another ELISA hiv antibody test, confirmed with a Western Blot if the ELISA is positive. Only if the Western Blot is also postive should you consider yourself positive. click here for diagnostic test information

If you've already had confirmation, then you still need to get to a doctor for more blood tests to determine your CD4 and Viral Load counts.

Ann
« Last Edit: August 02, 2007, 06:12:31 AM by 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 blacky1980

  • Member
  • Posts: 20
Re: newbie
« Reply #9 on: August 02, 2007, 07:51:28 AM »
Hello welcome to the forums and I was suggesting you to read the long term survivors and you will get to hear some wonderful stories. I just was diagnosed and I did not need any meds my viral load low and the CD4 is high. You will be fine so try not to worry much
Blacky1980

Offline Queen Tokelove

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  • Posts: 6,033
  • Smokey the Smurf
Re: newbie
« Reply #10 on: August 02, 2007, 02:55:17 PM »
I am in total agreement with Ann. I noticed too that you didn't mention your cd4 or your viral load. Do you know what your numbers are? I have been dealing with this virus for 10 years, really have never had any serious problems other than the occassional dip in numbers. I am having health issues due to being diabetic.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline MOONLIGHT1114

  • Member
  • Posts: 1,918
  • Cheech 2.2.94 - 4.23.10 We miss you so much!
Re: newbie
« Reply #11 on: August 02, 2007, 06:39:56 PM »
Hi Powerpuff~

Its amazing how this virus has changed in the past 14 years or so, since it became a part of my life.  Everyone IS different, but I wanted to share my personal experience with you.  My late husband tested pos in '88 and didn't take his meds.  I came back into his life and found out about myself and ultimately him, being positive in '93.  He SHOULD have been taking AZT per his doctor's orders, but didn't.  He died right as the protease inhibitors were coming out in '96, but it was too late.  And what was I supposed to do if he didn't want to take meds?  I was naive about the virus then, but vowed to not let it take my life.  I got labs done every three months and in '95 (a year before my husband died of lymphoma) I went on AZT myself.  I was on Retrovir, Epivir, Combivir, all kinds of "Virs" in the mid-90s.  When the protease inhibitors came out, I started taking them, in the Fall of '96, right after Dave had died.  Started the very next month, actually. 

I am AMAZED at how many people in these Forums are NOT on meds!  It is amazing and wonderful to hear (Go, Queen, go, witcho bad self!  lol).  I never once thought that NOT taking meds was an option, and I guess for me, it never was.  My CD4 dropped to 396 in '95 and that's when I started AZT. 

Please don't think that just because your friend died after seven years that you will, too.  This is a chronic illness for most these days.  I am diabetic and on insulin, and have so many more physical probs from diabetes than from HIV.  We all come from different backgrounds and circumstances, different lifestyles and beliefs.  I feel I have been personally very lucky, having been on meds for so long with no real side effects, at least not very bothersome ones.  OK, so I am going to join our girl Ubotts on the "Humpty Dumpty" wall cause I am thick in the middle from lipo, as many of us GFs are, but if that's the worst I have to deal with, so be it.  I have my MIND, and with that I have made the best decisions possible for myself over the past 14 years.  Don't be afraid, and in my opinion, I certainly say DO NOT avoid meds if your doc feels you need them.  Get a second opinion if you're unsure and turn here for more advice on what to expect!

I echo everyone else's question?  Are you in fact HIV+ and if so, what is your CD4 count and your VL (viral load)?  Please let us know and stay up-to-date with your doc's visits.

You CAN do this, we're all here for you, honest.

~Cindy
« Last Edit: August 02, 2007, 06:44:16 PM by MOONLIGHT1114 »
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline ubotts

  • Member
  • Posts: 347
Re: newbie
« Reply #12 on: August 07, 2007, 11:53:17 AM »
Hi there
I was hiv since 1987 and didn't start treatment till 2002..
I felt ok until my numbers drop down to 27 t cells..I felt something was wrong
right away, and went in to see the doctor..
I was put on viread videx and sustiva...that worked pretty good, brought up my my numbers,,,but after awhile my numbers started to decrease..So they do
a panel test to see which medicine isn't working for you any more.
It was the sustiva...You not suppose to eat and your suppose to take it at nighttime, but every nite i ate something before i went to bed..Bad habit i had
since i was young...so that's why the sustiva probably didn't work.
If your feeling ill go into the doctors get your blood drawn and find out what your
numbers are..Each one of us is different, so its hard to go by what we write back to you...You must tell us your numbers if you know them so that we can better assist you...Try not to stress yourself out..I know its easier said than done,
but try...we are all here for you...Glad you joined the forum..
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline vivyt

  • Member
  • Posts: 546
Re: newbie
« Reply #13 on: August 15, 2007, 01:31:03 AM »
Hi there! I am very new to this too. I was put on Atripla about 2 weeks after I was diagnosed. I had been very sick and did not know I was positive. Write after finding out I was diagnosed w/pneumonia. That was at the end of May. My last test results from about a month ago were CD4 80 something and my viral load is 400 something. Sorry I can't remember the exact numbers. Needless to say, I cannot imagine not being on meds. I was under the impression that if you did not take meds you would just get progressively worse. I guess this is not the case.

I still have a lot to learn about this disease.


 


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