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.
October 31, 2014, 12:59:25 AM

Login with username, password and session length


Members
Stats
  • Total Posts: 644110
  • Total Topics: 49024
  • Online Today: 162
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 3
Guests: 128
Total: 131

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: who here is not on treatment?  (Read 2647 times)

0 Members and 1 Guest are viewing this topic.

Offline Souledout

  • Member
  • Posts: 145
who here is not on treatment?
« on: March 24, 2013, 03:22:20 PM »
Coming up to get my latest results this week and got me wondering:

Who on the forum is not receiving HAART?

Why are you not on treatment?

What are your numbers?

How do you feel about this in body and mind?

I'm not on it yet as guidelines in the UK say I should start at 350 CD4 count. Apart from getting a cold sore every time I go out drinking I feel fine but I am concerned about infecting my boyfriend. Very concerned really, as is he, even though he is coming round and getting less jittery.

I'm fairly sure my viral load will be much higher than last time, so far having a lower than normal viral load has helped me feel less contagious  and helped put my mind at rest (a little anyway).

Thanks.
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline buginme2

  • Member
  • Posts: 3,138
Re: who here is not on treatment?
« Reply #1 on: March 24, 2013, 03:50:17 PM »
UK guidelines do allow for someone to start treatment if their cd4 is greater than 350 if the reason is to reduce transmission to a partner. 

"We recommend following discussion, if a patient with a CD4 cell count >350 cells/mL wishes to start GPP ART to reduce the risk of transmission to partners, this decision is respected and ART is started."

Section 2.1.2.4

http://www.bhiva.org/documents/Guidelines/Treatment/2012/hiv1029_2.pdf


If you want to start, print that out and discuss with your doctor.  Just though I would share that with you.

(Other than that I'm on treatment so ill let others who are not post)

Offline karry

  • Member
  • Posts: 271
Re: who here is not on treatment?
« Reply #2 on: March 24, 2013, 03:54:33 PM »
Hi
I was diagnosed 6 years ago. Not on treatment. CD4 has always been around 700-750. VL feb was at 600 copies, the highest since daignosis.

I feel ok, but I know someday I will have to go on treatment.
I feel a lot of respect and gratitude to those who were there before me, and thanks to whom I can now rest assured that when comes the time for treatment, I will do just fine.

K.
Take it a day at a time....and be positive about it too!

Offline Souledout

  • Member
  • Posts: 145
Re: who here is not on treatment?
« Reply #3 on: March 24, 2013, 05:56:01 PM »
Thanks buginme, I knew about the option and that's partly why I started this thread. It's good to have the details. Karry, you seem to be doing pretty well so far, I hope it carries on in that vein for a few more years.
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Online tednlou2

  • Member
  • Posts: 4,995
Re: who here is not on treatment?
« Reply #4 on: March 25, 2013, 12:36:58 AM »
Not on meds yet.  My CD4 has been stable around 700.  VL is usually under 20k.  CD8 is usually 1,800.  CD4% bounces from low 20's to high 20's, but usually right in middle at 25%.  I did have my highest vl reading this last time at 31,000.  I have had two CD4 drops to about 500.  Both times I was very stressed, when giving blood. 

So, I have just been seeing how it goes.  I am pretty sure I was infected in 2001, but diagnosed in 2008.  After getting ill in 2008, I fully expected to start meds right away.  My numbers rebounded, so I held off.  I always wonder whether I am making the right choice.  I do worry about the unseen damage from inflammation.  I read different things.  I've read where some believe meds don't reduce inflammation as much as many think, especially in those with a moderate or low vl.  And, where many don't believe there is a significant benefit from starting above 500, except to be less infectious.  I've read where others say differently.  I don't know.

So, I am in a holding pattern.  I feel ok.  I know I don't have the energy I use to have, and I don't think it is due to just being older now.  37 is still young.  But, I have depression and anxiety issues, so it can be hard to determine what is the virus and what is anxiety.  Anxiety can cause all sorts of physical symptoms.  I suspect it is a mix of both.

I do believe I would probably feel much better on meds, not just from the meds working, but also mentally-- feeling I was be proactive and taking charge.  I have always said I would for sure start by CD4 500. 

Offline skycee

  • Member
  • Posts: 72
  • oh you are having a bad day? Did you die?
Re: who here is not on treatment?
« Reply #5 on: March 25, 2013, 12:53:43 AM »
I got infected in September of last year and as at my 1st and only test my cd4 was higher than the recommended 350 required to start treatment. I do think health wise it's been 50/50 for me cos there are days I feel very well and there are days I feel tired not necessarily sick buh plain tired. It does bother me what's going on in me and how to control it without meds. And also I feel leaner, lost about 4kg in weight and have been trying really hard to maintain it or get it back and don't know how possible that is without meds. Mentally it feels like I'm walking a tight rope and I'm always on the edge even a pimple on my face makes me imagine things.

I'm expecting my new results tomorrow, that would tell me how well i have been coping since dgx till date.

And yes I still wish I never crossed this path.
Infected September's 2012
Seroconverted October 2012
Elisa test- indeterminate 20th November. 2012
Rapid test - Negative 23th November 2012
Elisa test - Positive 10th December 2012
CD4 - 546, 12th Dec 2012
CD4 600+, VL 6702 26th March 2013

Offline RapidRod

  • Member
  • Posts: 15,288
Re: who here is not on treatment?
« Reply #6 on: March 25, 2013, 06:58:28 AM »
I've been HIV positive since 1984 for 21 years I was not on meds CD4 1400-1200 VL avg. 4500. Classified as a LTNP in 1989. Physically wise, I never felt any different than I had felt before diagnosed. In 2005, CD4 crashed, hospitalized with Disseminating Histoplasmosis. Physical health went to shit, lost my hearing in left ear, battled the histo for about 6.5 years and have chronic CFS. Was on Atripla for the past few years and recently switched to Complera. Now I'm back to feeling pretty well except for CFS which I take medication for that.

Offline Dr.Strangelove

  • Member
  • Posts: 213
Re: who here is not on treatment?
« Reply #7 on: March 25, 2013, 05:18:23 PM »
I'm not on treatment.
Been positive for less than 2 years. Viral load never went above 10.000 and CD4s were between 500 and 800 for the most part.
I do not feel any changes to my body, health or wellbeing since I am positive. I don't get sick more often. I am not more tired or anything. I did not feel any symptoms during seroconversion. I'd never suspected to be poz if I hadn't done that test.
Despite all that, I want to get on meds soon. The reason I haven't yet was because I was out of my country and didn't have proper health care coverage abroad.
The guidelines here also still say 350. But the newer studies seem to show benefits to start treatment at the 500 mark.

I don't like the idea of seeing my CD4s drop. I rather see them climb. So, that's one reason to start early. At first I was concerned about side effects but after doing a lot of reading and now having some real-life poz friends who are on meds and have no side effects whatsoever, I am not worried about that anymore.
Another important reason for me is the peace of mind you have when being UD. First of all you know that the virus is under control. But also, you don't have to worry anymore about sex. I'm not the overly anxious type of guy but knowing that I am infectious is still in the back of my head when I have sex. What if the condom breaks, what if I get drunk and do something stupid, what if...  these kinds of concerns. Knowing that the risk of infection is reduced to a minimum would take most of these worries away, hopefully. And also the worries of the guys I have sex with (in those cases where I chose to disclose).
Sooner or later we all have to start anyway. Why drag out the start of treatment for a few more months or a year if you can do something about your health right away. I'd rather start now instead of waiting and see the CD4s decline. (If I was elite controller, I might see things differently)

On the other hand, my concerns about starting meds is that I will be reminded of this virus every single day (then again I log on to this forum every single day, so what's the difference). I'm slightly worried about adherence because I have a very unsteady daily routine and sleeping patterns.

Offline leatherman

  • Member
  • Posts: 6,273
  • Google and HIV meds are Your Friends
Re: who here is not on treatment?
« Reply #8 on: March 25, 2013, 08:08:38 PM »
I'm slightly worried about adherence because I have a very unsteady daily routine and sleeping patterns.
get something you can take with food and take it with dinner every night. ;) it's a great way to remember. and once-a-day regimens have pretty great leeway timewise. surely you'll be eating dinner within the same 4-hr window most evenings
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Souledout

  • Member
  • Posts: 145
Re: who here is not on treatment?
« Reply #9 on: March 26, 2013, 04:09:53 PM »
So I shouldn't google disseminating histoplasmosis. In fact I shouldn't google lots of things I read about.

I think I'm coming round to the idea of meds a bit more. At the beginning I had them all bundled up with the virus itself, now I'm more used to having being HIV positive I know that they're a lifeline. It's nothing I"m going to rush into though, I stil want to see how my body copes over the next year or so.

Skycee, have you got your numbers back then? I think we were infected around the same time.
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline skycee

  • Member
  • Posts: 72
  • oh you are having a bad day? Did you die?
Re: who here is not on treatment?
« Reply #10 on: March 26, 2013, 11:58:40 PM »
Hey Souledout I have and yes we got infected almost at same time.
My cd4 is over 600 and the vl is 6702, so my numbers are still ok.
Infected September's 2012
Seroconverted October 2012
Elisa test- indeterminate 20th November. 2012
Rapid test - Negative 23th November 2012
Elisa test - Positive 10th December 2012
CD4 - 546, 12th Dec 2012
CD4 600+, VL 6702 26th March 2013

Offline Souledout

  • Member
  • Posts: 145
Re: who here is not on treatment?
« Reply #11 on: March 27, 2013, 06:15:49 AM »
Glad your numbers are still OK. I'm hoping to still have a very low VL but I'm thinking I'm not that lucky and it will be much higher than I want. I'd be happy to get results similar to yours.
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline Souledout

  • Member
  • Posts: 145
Re: who here is not on treatment?
« Reply #12 on: March 28, 2013, 04:19:57 PM »
So fuck you HIV. Viral load down to 291 and CD4 around the same. No treatment for me and a bit more peace of mind regarding my possibility of passing it on to my boyfriend.
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline skycee

  • Member
  • Posts: 72
  • oh you are having a bad day? Did you die?
Re: who here is not on treatment?
« Reply #13 on: March 29, 2013, 12:12:23 AM »
Dont I envy your numbers now.....they look great congratulations
Infected September's 2012
Seroconverted October 2012
Elisa test- indeterminate 20th November. 2012
Rapid test - Negative 23th November 2012
Elisa test - Positive 10th December 2012
CD4 - 546, 12th Dec 2012
CD4 600+, VL 6702 26th March 2013

Offline Souledout

  • Member
  • Posts: 145
Re: who here is not on treatment?
« Reply #14 on: March 29, 2013, 05:41:01 AM »
Thanks. Loving the good news, party weekend for me coming up!
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline CallMeSid

  • member
  • Member
  • Posts: 90
Re: who here is not on treatment?
« Reply #15 on: April 01, 2013, 08:07:43 PM »
Hi,

Chiming in late, sorry.

I'm not currently on meds.  I've not had labs done for 3.5 years or so.  Insurance issues, doctor issues.  No idea if my numbers from 2009 still reflect my current reality.  Time will tell...
07/2006 HIV-negative
06/2007 HIV-positive
07/2007 CD4: 795 (40%), VL: <50
09/2007 CD4: 629 (43%), VL: 895  (~2 weeks after measles/mumps/rubella booster)
12/2007 CD4: 854 (45%), VL: <50
03/2008 CD4: 880 (45%), VL: 151
12/2008 CD4: 943 (46%), VL: 116
05/2009 CD4: 865 (44%)  VL: 107

Online tednlou2

  • Member
  • Posts: 4,995
Re: who here is not on treatment?
« Reply #16 on: April 02, 2013, 01:14:06 AM »
Hi,

Chiming in late, sorry.

I'm not currently on meds.  I've not had labs done for 3.5 years or so.  Insurance issues, doctor issues.  No idea if my numbers from 2009 still reflect my current reality.  Time will tell...

How much longer will you go, without getting labs?  What kind of insurance problems?  No insurance?  Is your insurance not covering the labs?  If so, I would think an ASO would help you.  I am sure the HIV clinic I go to, which is at the university hospital, would see you for free, or at least on some sliding scale. 

"Time will tell" worries me. 

Offline Souledout

  • Member
  • Posts: 145
Re: who here is not on treatment?
« Reply #17 on: April 02, 2013, 11:33:43 AM »
Hi,

Chiming in late, sorry.

I'm not currently on meds.  I've not had labs done for 3.5 years or so.  Insurance issues, doctor issues.  No idea if my numbers from 2009 still reflect my current reality.  Time will tell...

You're numbers were fantastic but don't you worry that they may no longer be so? Personally I couldn't handle not knowing. I don't pretend to know anything about American insurance companies but there have got to be other ways of accessing medication if needed?
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline spacebarsux

  • Member
  • Posts: 1,350
  • Survival of the Fittest
Re: who here is not on treatment?
« Reply #18 on: April 02, 2013, 12:25:54 PM »
Not yet on meds. Labs in signature line.

I have some recurring skin issues- chronic sebhorreic dermatitis on my scalp.  :( I've also noticed some swollen lymph nodes - two on my thigh. Other than these no other major health issue comes to mind.
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%

 


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.