Quantcast

Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
December 19, 2014, 05:11:15 PM

Login with username, password and session length


Members
  • Total Members: 24258
  • Latest: ter353
Stats
  • Total Posts: 649908
  • Total Topics: 49602
  • Online Today: 190
  • 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: So many questions, guidance?  (Read 1283 times)

0 Members and 1 Guest are viewing this topic.

Offline absopozilutely

  • Member
  • Posts: 392
  • Love to chat/text/talk/encourage!
So many questions, guidance?
« on: March 09, 2014, 10:43:17 PM »
What to say what to say, so many words, but none of them can come out of my mouth....errr, fingers. I tested poz 2/4/14, I was infected 12/18, and got "the flu" over the new years weekend. Anyways, I have an amazing support group at Kaiser here in the US, and a great ID doctor. I even have a support peer counselor that I can text, call, etc. I text him a pic, what i'm concerned about is my numbers. My CD4 was 407, and my VL at 104,000, is that high? I guess i'm just confused, all my doctors say no, not at all. Everything I look at right now I think there's something wrong, I feel fine, I look fine, i'm not telling my family. I'm just curious about so much, because I want to live a long time, I read somewhere that I have to eat 3,200 calories a day! WTF! I'm overweight now, i've lost 60 lbs in a year preparing for gastric which I now wont do. I started Complera 5 days ago, and feel perfectly normal, my question is a few.
Can you still get Sores when UD, and on treatment, with good numbers?
I made the mistake of googling pics of sores, I have none, but since i'm not telling family i'm concerned showing symptoms, I guess I just want to hear from people, what is life like? I'll post more about my story soon or in a reply, family is coming home so cant talk to long. PS: 24 year old in California.
12/18 Infected
2/4 12:22pm tested POZ via ORAquick
2/19 WB Confirmation
2/4-2/19 VL 104,678 CD4 407
3/2 Genotype back, and Started Complera
4/2-CD4 688 38% and VL 1,600
5/1-CD4 592 42% and VL 336
5/22-CD4 732 31% and VL 109 :( STILL NOT UD!
5/31 Switched to Stribild :( I'll miss you Complera!
6/19 CD4 508 35% and VL UD!!!!! Crying at work like a baby.
9/19 CD4 799 46% VL UD yayyyy

Offline absopozilutely

  • Member
  • Posts: 392
  • Love to chat/text/talk/encourage!
Re: So many questions, guidance?
« Reply #1 on: March 09, 2014, 11:20:51 PM »
Sorry, ok back to talking. Anyways, my peer counselor is great, he's been very encouraging, i've read SO many forums, (Thank you Moderators, Ann is pretty awesome btw, same with Joe) Anyways, i'm just here, and thinking. I'm NOT depressed, in fact, I haven't cried once since finding out, maybe one day I will, but for now I just want to take it all in, and start building my support group, make friends. (This is FAR from a personals ad, lol) but I just want to know how other people recently, and long term are taking it?
12/18 Infected
2/4 12:22pm tested POZ via ORAquick
2/19 WB Confirmation
2/4-2/19 VL 104,678 CD4 407
3/2 Genotype back, and Started Complera
4/2-CD4 688 38% and VL 1,600
5/1-CD4 592 42% and VL 336
5/22-CD4 732 31% and VL 109 :( STILL NOT UD!
5/31 Switched to Stribild :( I'll miss you Complera!
6/19 CD4 508 35% and VL UD!!!!! Crying at work like a baby.
9/19 CD4 799 46% VL UD yayyyy

Offline Jmarksto

  • Member
  • Posts: 533
Re: So many questions, guidance?
« Reply #2 on: March 09, 2014, 11:52:59 PM »
Abso;  First, welcome to the forums - you came to a great place for information.  I'll try and address a few things in your post and I am sure others will help out as well.

Your numbers are fine - if your doctors are ok with them and you have a good relationship with them it is important to trust them.  If there is something more specific you are worried about please share - but all in all you are doing well and will do well.

3,200 calories a day -- No, you don't need that.  If you are referring to the calorie requirements for Complera (which I am on also) it is recommended that you have 400 calories with the pill.

Googling: Google can be a very good friend, but in some cases it can be an enemy.  My recommendation would be to back off of Google - come here if you have questions.

How are people doing?  I have been HIV positive about a year and a half and for the most part my life hasn't really changed.  There are others on here that have been positive for decades and I am sure they will chime in.  In short - you are going to be fine - you have good access to medical care and the best medicine, you are going to do well.

Again, welcome and take it easy,

JM
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD
11/03/14 CD4   711/34%   VL UD

Offline Jmarksto

  • Member
  • Posts: 533
Re: So many questions, guidance?
« Reply #3 on: March 09, 2014, 11:57:53 PM »
ooops, I forgot to address your question about getting sores.  Are you talking about Kaposi's sarcoma?  Again, the short answer is "no" you will not get that assuming that you adhere to your meds.

jm
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD
11/03/14 CD4   711/34%   VL UD

Offline absopozilutely

  • Member
  • Posts: 392
  • Love to chat/text/talk/encourage!
Re: So many questions, guidance?
« Reply #4 on: March 10, 2014, 12:42:53 AM »
Thanks for the advice, I just meant sores in general. But thats an old stigma. I'm just so curious why my CD4 went to 407 so fast, others i've seen have high cd4 and vl, after getting newly infected, I tested Negative 12/16, infected 12/18 (go figure) and positive 2/4, how did it lower my so quickly?
12/18 Infected
2/4 12:22pm tested POZ via ORAquick
2/19 WB Confirmation
2/4-2/19 VL 104,678 CD4 407
3/2 Genotype back, and Started Complera
4/2-CD4 688 38% and VL 1,600
5/1-CD4 592 42% and VL 336
5/22-CD4 732 31% and VL 109 :( STILL NOT UD!
5/31 Switched to Stribild :( I'll miss you Complera!
6/19 CD4 508 35% and VL UD!!!!! Crying at work like a baby.
9/19 CD4 799 46% VL UD yayyyy

Offline emeraldize

  • Member
  • Posts: 3,365
Re: So many questions, guidance?
« Reply #5 on: March 10, 2014, 12:47:59 AM »
Welcome. I've cleared my first decade being positive. Life continues to be interesting and worth waking for.  You'll get lots of good information, support and humor here. I remember being 24. My advice ?  Take good care of yourself. You lost 60 lbs? Fabulous. Are you exercising ? Get as fit as you can and don't let your diagnosis stand in your way. Go for every goal you want to set.

Offline absopozilutely

  • Member
  • Posts: 392
  • Love to chat/text/talk/encourage!
Re: So many questions, guidance?
« Reply #6 on: March 10, 2014, 01:25:47 AM »
I need to start exercising again, but yes, I was. I'm so nervous that i'm taking these pills and that nothing is happening, that i'm going to be 1 in a million that has some strange thing that doesn't respond, although the genotype came back as wild type so no resistance to anything. What do you mean by interesting? Any challenges you've faced?
12/18 Infected
2/4 12:22pm tested POZ via ORAquick
2/19 WB Confirmation
2/4-2/19 VL 104,678 CD4 407
3/2 Genotype back, and Started Complera
4/2-CD4 688 38% and VL 1,600
5/1-CD4 592 42% and VL 336
5/22-CD4 732 31% and VL 109 :( STILL NOT UD!
5/31 Switched to Stribild :( I'll miss you Complera!
6/19 CD4 508 35% and VL UD!!!!! Crying at work like a baby.
9/19 CD4 799 46% VL UD yayyyy

Offline kevinazus

  • Member
  • Posts: 23
Re: So many questions, guidance?
« Reply #7 on: March 10, 2014, 01:48:47 AM »
Hey Abso, I have been having a lot of the same questions as you. It looks like I'm just a couple of weeks behind you in this whole timeline. I was infected on December 30, got flulike symptoms about ten days later, and then finally tested positive on February 11. My CD4 count as of 2/11 was 524 and viral load was 245,000. Have been really worried because everything I read says that 524 is just barely above normal and that of our load of 245,000 is extremely high. Will never know what my "normal "CD4 count was before being infected but have also been wondering how it could have gone down to barely normal so quickly.

Have been waiting for the results of my genotype test before starting meds which finally came in a few days ago and I will be starting on Stribild tomorrow. My viral load is too high already for me to be able to take Complera. It has been a month since I last got tested and have been really worried about what by CD4 count and viral load are now. The doctor says there's no need to retest before starting treatment, but I am so curious and worried about it that I'm going to go get CD4 count on my own tomorrow before starting meds. Viral load test is just too expensive for me to do on my own.

Since you're a little ahead of me on all of this, I would be really interested to see how things go with you. Whether you have any side effects from the drugs and how quickly your numbers change. Please keep me posted.

Kevin

Offline emeraldize

  • Member
  • Posts: 3,365
Re: So many questions, guidance?
« Reply #8 on: March 10, 2014, 05:44:33 PM »
What I mean by interesting is that I've not curled up in a ball. I still find there are things I want to learn and do.  You asked ...what is life like?  I'm more than 30 years your senior. So it is my way of saying I ain't deadened yet. The spring still captivates. The constellations are worth staring at. Food tastes good.  And so on. You've got loads of years ahead of you and lots of researchers are working on HIV. Get educated and prepare to have some fun and some work. Clearer?

Offline Dan0

  • Member
  • Posts: 510
Re: So many questions, guidance?
« Reply #9 on: March 10, 2014, 06:17:32 PM »
Hi & Welcome Abso! 

12 plus years here!  The forum is a great resource-everything you could ever want to know, don't want to know and never even thought about all rolled up into one website.  There are a few laughs along the way, which doesn't hurt. 

The first thing I would say is that how you feel next year at this time may be completely different than how you feel now - disclosure to family and friends is not imperative. Just relax a bit and give that side of the process some careful consideration. Like I said - maybe next year you'll think and feel differently. For that matter, I would venture that next MONTH at this time you'll feel differently and by what I mean by that is better! You know better than anyone how this will impact your family and friends but it appeared in your first note that you were a bit concerned about them finding out what you were doing on the computer. So, don't think that because you're either alone or don't have a tangible network that you have to reach out immediately to 'tell someone'.  Fortunately, you're on here now  :D

For the most part, in the past decade plus, I rarely think about condition anymore.  I have made some lifestyle changes years ago (exercise, eating healthier, etc) that have continued to this day.  Basically, do what anyone should already be doing and take care of yourself, listen to your doctor and do some due diligence on knowledge related to HIV.  Like I said - being here is a great start! 

Your numbers?  I think that was similar to what I had when I started on meds about 8 years ago.  Don't worry - the meds do their job and they'll do their job for you!  My latest numbers are great with undetectable an over 1100 CD4.  I couldn't wait for the "UD" status milestone when I started meds.  When it happened - and it happened fast -  I was like, "Is that it?"  I'm not certain what I was expecting - circus clowns, fireworks and confetti? I felt no different because this really doesn't change who you are.

By the way - congrats on the 60 pounds!!  Now THAT is something to celebrate!!
« Last Edit: March 10, 2014, 06:33:31 PM by Dan0 »
You can be the ripest, juiciest peach in the world, and there's still going to be somebody who hates peaches.

"Honey, you should never ask advice from a drunk drag queen who has a show to do." - JG

06/2002 DX
10/2006 Atripla UD
10/2013 Stribild Still UD

Offline absopozilutely

  • Member
  • Posts: 392
  • Love to chat/text/talk/encourage!
Re: So many questions, guidance?
« Reply #10 on: March 11, 2014, 01:07:33 AM »
OH MY GOD total freakout! Someone REALLLLLLY needs to re-write when you're signing up and it asks if members can email you. I thought it would scramble my email address and still not show it, but NOPE! It showed it. Thanks Irish, for helping me get through that, and getting it changed so that I cant show up in google. At SOME point, i'm praying ANN or JEFF will chime in! But really, they need to say that if you check that box, your email address WILL be displayed. Anyways, its been so nice meeting people on here, i'm even texting 2 new people. How AWESOME, I love to talk, i'm more then happy to chat with people, younger, older, whatever.
12/18 Infected
2/4 12:22pm tested POZ via ORAquick
2/19 WB Confirmation
2/4-2/19 VL 104,678 CD4 407
3/2 Genotype back, and Started Complera
4/2-CD4 688 38% and VL 1,600
5/1-CD4 592 42% and VL 336
5/22-CD4 732 31% and VL 109 :( STILL NOT UD!
5/31 Switched to Stribild :( I'll miss you Complera!
6/19 CD4 508 35% and VL UD!!!!! Crying at work like a baby.
9/19 CD4 799 46% VL UD yayyyy

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: So many questions, guidance?
« Reply #11 on: March 11, 2014, 08:35:39 AM »
Hi Abso, welcome to the forums.

ONLY YOU CAN SEE YOUR EMAIL ADDRESS. Well, admin and moderators can too, but we're trustworthy people who would never, ever divulge that information to anyone. If you don't believe me that only you can see your email address, go into any profile and you will not be able to see their email address, whether or not they have the email function enabled.

I unchecked your box concerning emails (and you will still be able to see your own email address - and you can go back into your profile and re-check it if you really want this function enabled, but I don't recommend it). While someone can send you an email through this function, they still won't be able to see your email address unless you email them back.

I don't recommend that people have this function (allow users to email me) enabled because Worried Wells from the Am I Infected forum, who are barred from having the PM privilege, can email you with intrusive questions when you have this enabled. Some of them have severe hiv-phobia mental health problems (these are usually the types who try to abuse the system) and we do our best to stop them from bothering our poz members.

As you're worried about your confidentiality and/if you want to talk to any member privately, use the private message (PM) function instead. If you feel you want to use email with someone instead, I recommend you get to know them first, both through their postings in the public forum as well as through PMs, before you give them any personal contact details (via PM) such as your email address or your phone number.



Regarding your new diagnosis; your numbers were typical of a new infection and you started meds right away, so you can fully expect your CD4s to go higher and your VL to quickly go down, and will probably reach undetectable levels within a few months, if it even takes that long. In short, you're going to be ok.

Life does go on and just like for people who are hiv negative, your life will largely be what you make of it. Don't let hiv define you and don't let it stop you doing anything that you want to do.

You're going to be just fine. Trust Aunty Ann on that one.

Hugs,
Ann
xxx
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

 


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.