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Author Topic: New positive - still dealing with it.....  (Read 3099 times)

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Offline jb1973

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New positive - still dealing with it.....
« on: April 11, 2011, 11:22:43 AM »
I tested positivie March 3, 2011. I believe I got the virus about 3 years ago?
 As with most of some of the posts made here, I think im going through all the emotioins that everyone else is, or has.  I just have so many unaswered questions, and a lot of "what ifs".  I know I need to not stress about things but it is so hard.  I go to sleep thinking HIV and wake thinking HIV.  Everyone says it will get easier, I just want it to be easier now. 
I'm worried about meds, will i be able to afford them? Sure I have a good job, but witll the copays be too much for me to handle? My dr says my first set of numbers are good....CD4-534, VL-6,600, so no meds now.  I go back at the end of this month to get the results of the type, and some more blood work....TB, recheck levels, etc. I know that my CD4's are going to go down, that is the progression of the disease, but, is there anything that could possibly help them stay up, supplements, vitamins, etc? 
My personality doesnt allow me the luxury of just accepting things, I tend to over analyze and obsess about stuff.  I've read a lot of the posts on here and I do find some comfort in reading everyones responses. 
??Infected - 08-09??
3/3/11-tested POZ
3/18/11 - CD4-534 VL-6,600
6/24/11 - CD4-642 VL-10,800
10/11 - CD4-580 33% VL-9,900
1/12 - CD4-602 ?% VL-9,700
3/12 - CD4-552 27% VL=10,684
8/12 - cd4-550 24% VL=9.865
Started Isentress/Truvada
10/12- CD4-613 31% VL=UD

Offline imashadow

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Re: New positive - still dealing with it.....
« Reply #1 on: April 11, 2011, 01:42:31 PM »
Hey, welcome to the board. Unfortantely you have this but the good thing is that you have come here for support. I think I was infected around the same time as you, and I have just recently found out, so I have a clue of what your going through. My numbers are CD4-374 and VL-UD. I have only been on meds for a few months but I showed UD just 4 weeks in and before that my VL was around 30,000. I was put on Issentress and Truvada. In terms of supplements I found an article that stated if you take a regimen of vitamin b complex, vitamin c, and vitamin E that it should significantly increase your CD4 by even 24%. Here is a link http://www.medscape.com/viewarticle/543573. I know your doc says you dont need to go on meds, but i know that it has made a world of difference for me and hopefully it will for you. Good Luck and stay strong. I know it may be hard but you cannot continue to go on with what ifs, because whats done is done and it cannot be changed now. Look forward to the future and making yourself better. I hope it gets easier for you and I bet there are tons of people out there willing to help you. Its up to you to let them.
« Last Edit: April 12, 2011, 01:47:06 AM by imashadow »

Offline drewm

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Re: New positive - still dealing with it.....
« Reply #2 on: April 11, 2011, 02:22:33 PM »
Welcome to the forums...sorry you are here (with the dx) but glad you found us!

I totally understand where you are coming from where HIV is all you are thinking about. It gets better but it takes time. Hang in there!

I know that my CD4's are going to go down, that is the progression of the disease, but, is there anything that could possibly help them stay up, supplements, vitamins, etc?

Your CD4 can fluctuate as must as 100 between morning and evening. Don't worry about one count reading, its more important to look at a series of tests to determine what course those TCells are taking. As for meds, here's the good news:

ATRIPLA took my CD4 from 8 (eight) to 323 in a few months and my VL went from 500,000 to 30. Take a deep breath and try to relax. It will be tough for awhile but it does get better.
MAY 2010
VL>500,000 CD4>8

JUNE 2010 STARTED ATRIPLA

DEC 2010
VL>30 CD4>323

Atripla. Valtrex, Trilipix, Fluoxotine

Offline Ann

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Re: New positive - still dealing with it.....
« Reply #3 on: April 12, 2011, 07:13:22 AM »
Hi JB, welcome to the forums.

There really will come a day when you do not wake thinking about hiv or go to sleep thinking about it or think about it every minute in between. It takes time, but you'll get there.

My dr says my first set of numbers are good....CD4-534, VL-6,600, so no meds now. .... I know that my CD4's are going to go down, that is the progression of the disease, but, is there anything that could possibly help them stay up, supplements, vitamins, etc? 


Your numbers are very good. While the usual rule of thumb that you'll see is that people with hiv will lose between 50 and 100 CD4s per year of untreated infection, this is only an average and isn't true for everyone. Some people can remain stable without treatment for years and I'm one such person. I haven't posted my numbers history for a while now, so I'll post them here so you can see just what I mean. I was infected in the spring of 1997 (hindsight is a wonderful thing) but I wasn't diagnosed until February 2001. I'm still not on meds and I'm doing fine.

I haven't done a single "special" thing to keep my numbers as they are. I take a generic multivitamin and prophylactic acyclovir for herpes, but other than that, I smoke, I drink recreationally, eat a normal diet, get a little bit of exercise (not having a car helps!) and sometimes stay up all night. The only other thing I did was to treat my hep C coinfection (successfully), but that's it.

How fast a person progresses with hiv seems to be more genetic than anything. I've known people who tried to do the "right" thing with supplements and exercise and a super-healthy diet, but still progressed. I've also known lots of people like me who did nothing special and had good numbers without treatment for years. It's the luck of the draw.

Where you see my VL listed as 00,000, it's because the test wasn't done, not because I was undetectable. I used 00,000 just to keep the list neat. I didn't always record the CD4% in the early years because I wasn't aware of its significance.

2001-02-22 VL 80,700 CD4 490
2001-03-30 VL 21,000 CD4 997 32%
2001-05-29 VL 43,700 CD4 440
2001-07-10 VL 43,700 CD4 350
2001-08-07 VL 25,000 CD4 480
2001-08-21 VL 00,000 CD4 660
2001-10-08 VL 91,100 CD4 470
2001-12-04 VL 96,200 CD4 620

2002-02-04 VL 21,000 CD4 620
2002-04-11 VL 00,000 CD4 530 26% Started hep C treatment
2002-07-10 VL 00,000 CD4 460 27%
2002-09-11 VL 00,000 CD4 530 26%
2002-10-09 VL 30,300 CD4 322 31%

2003-01-08 VL 17,800 CD4 363 23%
2003-04-02 VL 06,940 CD4 410         Ended hep C treatment
2003-07-07 VL 40,700 CD4 474

2004-01-28 VL 29,900 CD4 518 28%
2004-03-?? VL 07,370 CD4 281 23% had shingles
2004-06-01 VL 07,740 CD4 460 27%
2004-08-30 VL 13,000 CD4 568 26%
2004-11-23 VL 11,000 CD4 645 28%

2005-02-15 VL 03,350 CD4 532 27%
2005-03-29 VL 00,000 CD4 715 28%
2005-06-21 VL 06,580 CD4 660 26%
2005-08-02 VL 00,000 CD4 732 28%
2005-10-12 VL 00,000 CD4 320 25% minor op previous day
2005-11-08 VL 10,200 CD4 786 28%

2006-01-31 VL 12,500 CD4 787 32%
2006-04-25 VL 11,800 CD4 628 29%
2006-07-18 VL 18,400 CD4 550 26%
2006-10-17 VL 14,500 CD4 447 26%

2007-01-16 VL 12,600 CD4 567 26%
2007-04-10 VL 07,610 CD4 441 26%
2007-07-03 VL 05,630 CD4 411 25%
2007-09-25 VL 16,700 CD4 525 27%
2007-12-18 VL 12,900 CD4 299 22%

2008-02-05 VL 13,700 CD4 489 19%
2008-04-29 VL 10,700 CD4 433 26%
2008-07-22 VL 10,200 CD4 314 27%
2008-11-04 VL 03,050 CD4 470 29%

2009-01-27 VL 06,700 CD4 459 25%
2009-04-21 VL 07,390 CD4 399 25%
2009-07-21 VL 35,000 CD4 561 32% New VL assay used
2009-11-03 VL 39,900 CD4 576 26%

2010-02-09 VL 00,000 CD4 392 29%
2010-05-18 VL 20,500 CD4 368 26%
2010-10-12 VL 08,000 CD4 573 28%

My last blood draw was on January 18th, but I won't get those results until next Tuesday. I travel to Liverpool for my hiv healthcare (I live on an island in the Irish Sea) so unless there's a problem, I don't get my lab results until I have another appointment.

As you can see, your number can bounce around quite a bit. The state of my infection has always been considered to be stable. I thought towards the end of last year that it was time for me to start meds - and my doctor agreed because of various little problems I'd been having - but when my October CD4s came back in the 500s, the treatment idea was shelved. I'm hoping my results from January will still be good, but I'm ready to start if the need is there.

So don't panic. You may not need meds for years yet. As long as you are being monitored regularly - every three months is best when you're not on treatment - you won't need to worry. And as you can see from my results, just one result in the "start treatment" range isn't necessarily a good reason to go on meds as your numbers may rebound with your next set of labs. You need to look at trends, not one single result.

You need to be ready to start meds. They're a big commitment, emotionally, physically and financially. Of course it's a little different for someone diagnosed with very low CD4s, a high VL and perhaps an OI or two, but for someone fairly recently infected and diagnosed with good numbers, you have the luxury of waiting to see how it goes before you decide on treatment.

Ann

edited for clarity
« Last Edit: April 12, 2011, 07:20:22 AM by Ann »
Condoms are a girl's best friend

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"...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 spacebarsux

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  • Survival of the Fittest
Re: New positive - still dealing with it.....
« Reply #4 on: April 12, 2011, 08:33:53 AM »
Hi JB, Welcome to the forums! I too am recently infected and was thinking about HIV practically 24/7, but I find myself not thinking of it as much now as I did even a month ago. Give it time, day by day it gets easier- hang in there!

For what its worth, hanging out with my friends, playing sport or working out, listening to music I like, watching cheesy films helped me take my mind off it a bit. Also, hanging out on these forums helped me cope better.
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 spacebarsux

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  • Survival of the Fittest
Re: New positive - still dealing with it.....
« Reply #5 on: April 12, 2011, 08:38:54 AM »
*sorry correction- recently diagnosed (not infected)
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 jb1973

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  • Posts: 67
  • To thine ownself be true
Re: New positive - still dealing with it.....
« Reply #6 on: April 12, 2011, 07:27:49 PM »
Thank you everyone for your encouraging words.  I truly hope that it will get easier as time goes by.  I keep telling myself, it could be worse, I could have terminal cancer and 3 months to live.  I truly believe that.  I guess I have the most trouble feeling like I have disappointed myself, my partner, everyone.  I try not to dwell on it too much, because, I knew what I did was risky business, so, i now have to live with the consequences.  My partner has really been a rock during this whole mess.  When I tested positive and he tested negative, he was worried I was going to leave him!  When he said that to me, I thought I was going to die, I dont think I could have loved him more at that moment. He has been nothing but supportive, loving, and honestly, very understanding.  I feel for him sometimes though because he really has no one to talk to himself about what he is going through.  He unfortunately has to deal with my breakdowns once a week. 

I really am not opposed to taking medication, I would just prefer to do it later than sooner. 

Sapcebarsux - it has been getting better. I just hate when I realize I havent thought about HIV for 15 minutes, I immediately think, "oh shit, i havent thought about it for 15 minutes"-then i inadvertently think about it for 45 minutes more...........i hate that.  Being busy helps, I look forward to being busy at work, with the key word busy.  I have a rather long commute and sometimes that can do horrible things to my mind but day by day, it has been a little better.

Ann - Thank you for your encouraging words.  I've been obsessing about my diet ever since the beginning of the month.  Well, more than usual, my partner and i decided to start eating healthier at the beginning of february to lose some weight we both put on, but, since my diagnosis in march, I have been trying to avoid the bad stuff.  I guess the lesson to learn is to live normally.  Looking at your numbers is encouraging, but, I know it is not like that for everyone, but, I will keep some hope alive for me.  Hopefully, after my next blood test at the end of the month I will be able to exhale a little more and relax some, after finding out the HIV strain, etc.

Drew and IMashadow - thanks for the encouragement. I really believe it will get easier with time, I just wish it was now......I suppose once I find out my next set of numbers and the type, it will maybe steer me in the right direction. And I do find comfort reading the posts on here also, although no two are alike, a lot of them are very similar.  Honestly, when I found the forum on Friday, I spent about 2 hours at work reading through the website and when I was done, felt incredibly better. 

So yea. Thank you all.
??Infected - 08-09??
3/3/11-tested POZ
3/18/11 - CD4-534 VL-6,600
6/24/11 - CD4-642 VL-10,800
10/11 - CD4-580 33% VL-9,900
1/12 - CD4-602 ?% VL-9,700
3/12 - CD4-552 27% VL=10,684
8/12 - cd4-550 24% VL=9.865
Started Isentress/Truvada
10/12- CD4-613 31% VL=UD

Offline Buffalosad

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  • Posts: 11
Re: New positive - still dealing with it.....
« Reply #7 on: April 12, 2011, 10:05:44 PM »
Hi there, I was diagnosed in Aug 10, and know exactly how you feel. Most days if you keep busy seems like you think about it less. But yes its always on your mind. I was given vitamins to take in hopes to keep my cd4 count up, but didnt really work, I was already taking vitamins, so not sure when infected or anything. I think it was March of 09, thinking back, but not 100%.
I personally, being the control freak that I am, felt better once I started taking meds, made me feel like I was doing something about it. I was worried about the side effects than the cost of the meds. I am glad that I have a good insurance plan and I pay $45 a month for the 3 different meds I am taking.
On the other hand I was really not mentally prepared to start taking meds, I thought it would be later on, but seeing I am getting my numbers tomorrow after starting my meds, I am just hoping they will improve.
Stay busy and try to stay in good spirits..go for walks etc..  it may help.
Keep in touch and wish you the best.

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: New positive - still dealing with it.....
« Reply #8 on: April 13, 2011, 12:08:03 PM »
You're more than welcome, JB.

Looking at your numbers is encouraging, but, I know it is not like that for everyone, but, I will keep some hope alive for me.

I was diagnosed as part of a "cluster" of eight people, seven of whom I know personally (me included). We all would have been infected in '96 or '97 and we were all diagnosed in February '01. Of those seven people, four had to go on treatment right away. One didn't need treatment for another four years and one didn't need treatment for another seven years. I'm the last one who isn't on meds. (I don't know about the eighth person.) We're all doing well. But you're right, everyone is different.
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 jb1973

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  • To thine ownself be true
Re: New positive - still dealing with it.....
« Reply #9 on: April 13, 2011, 06:40:03 PM »
Thanks, Buffalosad for the reply. I do try to stay busy and it does help.  Good luck with your bloodwork-keep us posted on how it is going.  I still have another two weeks til i go back to get more blood work etc, so i am trying to stay upbeat.  I really think I'm doing much better thanks to the forums. Just reading some posts make me feel a ton better.  I'm really glad I stumbled across this site.  A wealth of information and all of the great people who seem to be really educated helps.   

??Infected - 08-09??
3/3/11-tested POZ
3/18/11 - CD4-534 VL-6,600
6/24/11 - CD4-642 VL-10,800
10/11 - CD4-580 33% VL-9,900
1/12 - CD4-602 ?% VL-9,700
3/12 - CD4-552 27% VL=10,684
8/12 - cd4-550 24% VL=9.865
Started Isentress/Truvada
10/12- CD4-613 31% VL=UD

 


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