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Author Topic: What's the best way to delay having to take meds?  (Read 7090 times)

0 Members and 1 Guest are viewing this topic.

Offline TabooPrincess

  • Member
  • Posts: 269
What's the best way to delay having to take meds?
« on: February 23, 2010, 05:09:47 AM »
Just got my latest numbers - I came off medication after the pregnancy 2 months ago.  Cd4 864, viral load 63,000 (this is more or less what my numbers were before the pregnancy).  Obviously I don't need meds yet but I was wondering if there are measures that can be taken to keep my Cd4 high??  I heard that smoking can reduce it, I smoke a bit,not much.  Is there anything else?  I'd like to be able to avoid taking meds as long as possible.
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline Matty the Damned

  • Member
  • Posts: 12,160
Re: What's the best way to delay having to take meds?
« Reply #1 on: February 23, 2010, 05:27:07 AM »
There's really no "best" way to avoid medications. Either you take 'em or you don't.

Sure, living a healthy lifestyle can make small differences - smoking, drinking to excess, eating poorly will all negatively impact on your well being but - pritikin diets or not HIV will ultimately have it's way.

Your CD4 count seems good (keep an eye on your percentage not just the absolute count) and current treatment guidelines recommend that medication shouldn't start any lower than 500 CD4 cells, so that might be an option here. Delaying treatment unless (until) you hit the 500 mark.

You need to understand that the only sure fire way to keep that CD4 count high is to supress the virus.

And there's only one way to suppress the virus.

MtD

Offline TabooPrincess

  • Member
  • Posts: 269
Re: What's the best way to delay having to take meds?
« Reply #2 on: February 23, 2010, 05:30:36 AM »
Yeh I understand - I was just curious if there was anything that seemed to have delayed Cd4 count dropping for those who have gone a few years and kept it high. 

My doctor has told me 350 - I guess when it gets near 500 (and yes percentage too) then we'll need to discuss it.  I'm hoping I've got a good few years yet.
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline Matty the Damned

  • Member
  • Posts: 12,160
Re: What's the best way to delay having to take meds?
« Reply #3 on: February 23, 2010, 05:38:06 AM »
Sure, there are plenty of folks who go for long periods without needing treatment and then others who just crash like a stone in short order without treatment.

With numbers like yours I wouldn't be considering treatment just yet. 864 is a fine number and the complications from medications are probably a good reason to wait and see for now.

Be wary of concepts like "immune boosters". The immune system is a self contained beast and there really isn't much we can do to "boost" it. So whilst things behaviours like smoking will reduce your immune function, it doesn't follow that not smoking will boost it, if you see what I mean.

MtD

/edit:Teh grammar. It is not good/
« Last Edit: February 23, 2010, 05:55:47 AM by matty.the.damned »

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: What's the best way to delay having to take meds?
« Reply #4 on: February 23, 2010, 09:49:27 AM »
Princess, I concur with Matty, he is wise. 

In my experience, getting on with your life and your life goals proved to be the best defense against immune decline.  However, I must caution you to steer clear of stress of any kind.  When I was creating my first AIDS Service Organization, it placed me right in the cross hairs of both undue stress, and immune decline.  This was 11 years into my infection. In the meantime, I also started two businesses, which caused little stress, because of my love for business.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Inchlingblue

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Re: What's the best way to delay having to take meds?
« Reply #5 on: February 23, 2010, 10:16:23 AM »
If you happen to also have herpes, many studies have shown that taking acyclovir (or valtrex) can delay HIV progression.

There are also supplements for which claims have been made regarding keeping CD4s high and/or VL low. Some of these are supported by anecdotal evidence and some by smaller studies but nothing definitive can be claimed. Some of these are: astragalus, NAC (N-acetylcysteine), selenium, green tea.

I think it's important, whether one has HIV or not, to take a good probiotics pill in order to keep the gut nice and healthy (there's lots of HIV in the gut).

Anyone with HIV, especially women, should consider a vitamin D/Calcium supplement.

LINK:

HIV illness 'delayed by' herpes drug aciclovir

http://news.bbc.co.uk/2/hi/health/8512412.stm

Herpes Therapy Slows HIV Progression

http://www.medpagetoday.com/HIVAIDS/HIVAIDS/18469

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: What's the best way to delay having to take meds?
« Reply #6 on: February 23, 2010, 10:20:24 AM »
I've been med-free for thirteen years and will be for the foreseeable future and I haven't a clue why. I don't eat a particularly great diet, I smoke, started drinking alcohol again two years ago after an eight year hiatus, the only exercise I get is walking (but I do plenty of that as I do not have a car) and I'm just generally not what you'd call a health freak. And I know plenty of people who did all the "right things" as regard diet etc, but their numbers still went downhill. It's a crap-shoot I guess.
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 Inchlingblue

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Re: What's the best way to delay having to take meds?
« Reply #7 on: February 23, 2010, 10:34:40 AM »
I've been med-free for thirteen years and will be for the foreseeable future and I haven't a clue why. I don't eat a particularly great diet, I smoke, started drinking alcohol again two years ago after an eight year hiatus, the only exercise I get is walking (but I do plenty of that as I do not have a car) and I'm just generally not what you'd call a health freak. And I know plenty of people who did all the "right things" as regard diet etc, but their numbers still went downhill. It's a crap-shoot I guess.

Are you on acyclovir for the herpes?

Offline Miss Philicia

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  • Posts: 23,575
  • celebrity poster, faker & poser
Re: What's the best way to delay having to take meds?
« Reply #8 on: February 23, 2010, 10:46:55 AM »
I've been med-free for thirteen years and will be for the foreseeable future and I haven't a clue why. I don't eat a particularly great diet, I smoke, started drinking alcohol again two years ago after an eight year hiatus, the only exercise I get is walking (but I do plenty of that as I do not have a car) and I'm just generally not what you'd call a health freak. And I know plenty of people who did all the "right things" as regard diet etc, but their numbers still went downhill. It's a crap-shoot I guess.

I have a close friend who lived on take out food, meth, and copious barebacking for eight years and he kept his number up.  Crap-shoot indeed.
"Iíve slept with enough men to know that Iím not gay"

Offline TabooPrincess

  • Member
  • Posts: 269
Re: What's the best way to delay having to take meds?
« Reply #9 on: February 23, 2010, 11:25:13 AM »
If you happen to also have herpes, many studies have shown that taking acyclovir (or valtrex) can delay HIV progression.

There are also supplements for which claims have been made regarding keeping CD4s high and/or VL low. Some of these are supported by anecdotal evidence and some by smaller studies but nothing definitive can be claimed. Some of these are: astragalus, NAC (N-acetylcysteine), selenium, green tea.

I think it's important, whether one has HIV or not, to take a good probiotics pill in order to keep the gut nice and healthy (there's lots of HIV in the gut).

Anyone with HIV, especially women, should consider a vitamin D/Calcium supplement.

LINK:

HIV illness 'delayed by' herpes drug aciclovir

http://news.bbc.co.uk/2/hi/health/8512412.stm

Herpes Therapy Slows HIV Progression

http://www.medpagetoday.com/HIVAIDS/HIVAIDS/18469


Ohhh that's very interesting.  I do have herpes but have only ever had the initial breakout (that I know of) and didn't use aciclovir, I just pained it out.  ANyway, that was before I was positive. Wonder how often you need to take it...daily or something?
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline Inchlingblue

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Re: What's the best way to delay having to take meds?
« Reply #10 on: February 23, 2010, 11:36:40 AM »

Ohhh that's very interesting.  I do have herpes but have only ever had the initial breakout (that I know of) and didn't use aciclovir, I just pained it out.  ANyway, that was before I was positive. Wonder how often you need to take it...daily or something?

Yes, I believe the participants in the study were on 400 mg. once daily.

Those links are to recent studies but other previous studies have also shown that controlling herpes through acyclovir (or Valtrex) can slow HIV progression. Before I started meds my doctor suggested I try it so I did. My HIV viral load did go down, it's hard to say if it was due to the acyclovir but it likely was since it happened after I started taking it. Apparently both viruses, herpes and HIV, can work together to make each other worse so controlling one also controls the other.

Now that I'm on HIV meds I stopped acyclovir because I'm doing well and I want to take as few meds as possible.

 

Offline TabooPrincess

  • Member
  • Posts: 269
Re: What's the best way to delay having to take meds?
« Reply #11 on: February 23, 2010, 11:45:48 AM »
Yes, I believe the participants in the study were on 400 mg. once daily.

Those links are to recent studies but other previous studies have also shown that controlling herpes through acyclovir (or Valtrex) can slow HIV progression. Before I started meds my doctor suggested I try it so I did. My HIV viral load did go down, it's hard to say if it was due to the acyclovir but it likely was since it happened after I started taking it. Apparently both viruses, herpes and HIV, can work together to make each other worse so controlling one also controls the other.

Now that I'm on HIV meds I stopped acyclovir because I'm doing well and I want to take as few meds as possible.

 

This interests me...did you used to have bad breakouts?  And does the herpes get worse as the Hiv progresses (I've been pos only 18 months or so).
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline Inchlingblue

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  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: What's the best way to delay having to take meds?
« Reply #12 on: February 23, 2010, 12:34:26 PM »
This interests me...did you used to have bad breakouts?  And does the herpes get worse as the Hiv progresses (I've been pos only 18 months or so).

No I didn't have bad breakouts at all, my doctor just recommended it because of the studies that had seen HIV progression slowing with acyclovir. My HIV viral load went down from about 24k to about 9k after starting acyclovir but I eventually decided I wanted to start HIV meds while my immune system was still in good shape.

I do think that if you are not ready to start HIV meds, since you also have herpes, it's not a bad idea to consider going on daily acyclovir.

As I was reading those links, they had different information of the dosage. One said 400 mg twice daily the other said 400 mg daily.

I know I was taking it once daily but I forget how many milligrams it was. I can look for it and get back to you. I was actually taking Valtrex, which is the prodrug version of acyclovir (basically the same thing but formulated differently for better absorption and it's not generic so more expensive).

Here is another thread where this was discussed:

http://forums.poz.com/index.php?topic=26069.0

Your question about herpes getting worse as HIV progresses is something Ann can share her experiences with, since I believe she has had both for many years and is not yet on HIV meds. I didn't experience any herpes outbreaks but it might have been because I was taking Valtrex (acyclovir).
« Last Edit: February 23, 2010, 12:37:16 PM by Inchlingblue »

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: What's the best way to delay having to take meds?
« Reply #13 on: February 23, 2010, 12:45:51 PM »
Princess, I agree, Acyclovir is probably a very good propholactic to start taking to keep your immune system in balance.  I have taken it since 1994, and have been both on high doses and low.  I don't know about studies, as I take most of my advise and information from my very skilled and experienced doctor.  I am now on the "normal" propholactic dose of 400mg twice daily.  I will be on it for the rest of my life.  Not a bad thing, just an ongoing crutch for my damaged immune system.  :)
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Ann

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  • Member
  • Posts: 27,947
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: What's the best way to delay having to take meds?
« Reply #14 on: February 23, 2010, 01:10:44 PM »
Are you on acyclovir for the herpes?

Yes, I am. I take 400mgs once a day, although the standard dose is 400mgs twice a day when taken as herpes prophylactic. Whenever I get a cold or stressed out about something, I usually try to remember to take it twice a day, otherwise I get an outbreak. (they don't call them "cold sores" for nothing!)

I started taking acyclovir because I was getting several outbreaks a month. I never noticed any difference in my numbers and I was watching out for a change. Nada.

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 TabooPrincess

  • Member
  • Posts: 269
Re: What's the best way to delay having to take meds?
« Reply #15 on: February 23, 2010, 01:35:32 PM »
Think I'll discuss this with my doctor next time around then. Not sure if it's worth it if I'm not having any problems with the herpes at the moment.  Any other similar stories then let me know!
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline leatherman

  • Member
  • Posts: 5,924
  • Google and HIV meds are Your Friends
Re: What's the best way to delay having to take meds?
« Reply #16 on: February 23, 2010, 01:35:51 PM »
i have a herpes zoster outbreak that happens in the middle finger of my left hand of all places (shingles in my finger!! :o) over the last 20 yrs. I was taking acyclovir only when I had outbreaks; but those jumped up to about 5 times a year and I just couldn't handle that anymore. I mean stress helped produce the outbreak, and the outbreak sure produced stress, so it was a vicious cycle. ::) Now I take just the 400mg daily dose. The only outbreak I've had in 3.5 yrs was when my partner was in the hospital and I slacked off on food, sleep, and the meds, etc. - not to mention all the stress I was going through. I don't know that it did any improvement to my numbers; but I do have to figure that the acyclovir played a part in getting and keeping me undetectable these last two yrs through all the stress of losing a partner, losing 2 homes, and moving back to the carolinas.  ;)
leatherman (aka mIkIE)


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

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline TabooPrincess

  • Member
  • Posts: 269
Re: What's the best way to delay having to take meds?
« Reply #17 on: February 23, 2010, 01:52:49 PM »
i have a herpes zoster outbreak that happens in the middle finger of my left hand of all places (shingles in my finger!! :o) over the last 20 yrs. I was taking acyclovir only when I had outbreaks; but those jumped up to about 5 times a year and I just couldn't handle that anymore. I mean stress helped produce the outbreak, and the outbreak sure produced stress, so it was a vicious cycle. ::) Now I take just the 400mg daily dose. The only outbreak I've had in 3.5 yrs was when my partner was in the hospital and I slacked off on food, sleep, and the meds, etc. - not to mention all the stress I was going through. I don't know that it did any improvement to my numbers; but I do have to figure that the acyclovir played a part in getting and keeping me undetectable these last two yrs through all the stress of losing a partner, losing 2 homes, and moving back to the carolinas.  ;)

Seems to be a few lts' on here who use this daily.  And the studies seem to suggest this is a good idea.  Definitely going to think about this and discuss with my doctor.  Although the idea of taking it daily is annoying, that's what I'm hoping to avoid as long as possible!  Guess it doesn't really matter if you miss doses though, unlike the ARVs?
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline leatherman

  • Member
  • Posts: 5,924
  • Google and HIV meds are Your Friends
Re: What's the best way to delay having to take meds?
« Reply #18 on: February 23, 2010, 02:21:08 PM »
Although the idea of taking it daily is annoying
I don't know a person over 35 who doesn't already take some med and/or supplement every day (vitamins, fish oil, biopolar meds, sleep aides, statins, insulin...the list is as endless as the health problems that everyone faces), so I don't think you're going to be able to "escape" taking something or other as you get older. LOL :D

here's some info from wiki:
http://en.wikipedia.org/wiki/Aciclovir
To date, resistance to aciclovir has not been clinically significant. Mechanisms of resistance in HSV include deficient viral thymidine kinase; and mutations to viral thymidine kinase and/or DNA polymerase, altering substrate sensitivity.[3]

HIV-1 progression can be delayed by using Aciclovir, according to study lead by Dr Jairam Lingappa. Effective in 16% of cases, can delay the HAART treatment by 1-2 years. University of Washington, Seattle. During a 2 year trial, 284 people progressed with the HIV-1, versus 324 who has not been treated with Aciclovir. http://news.bbc.co.uk/2/hi/health/8512412.stm.
leatherman (aka mIkIE)


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

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline Miss Philicia

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Re: What's the best way to delay having to take meds?
« Reply #19 on: February 23, 2010, 03:24:45 PM »
You eat food daily, is that annoying too?
"Iíve slept with enough men to know that Iím not gay"

Offline TabooPrincess

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Re: What's the best way to delay having to take meds?
« Reply #20 on: February 23, 2010, 04:10:12 PM »
You eat food daily, is that annoying too?

In absolutely no way whatsoever!  ;D
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline Etay1207

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Re: What's the best way to delay having to take meds?
« Reply #21 on: February 23, 2010, 04:26:16 PM »
I have a guy in my support group that has been poz 22 years and his tcells never declined. LUCKY HIM!  I have another 11 years and he is in the same boat.  My tcells were high for the first several years, then crashed all of a sudden.  I'm an on-and-off health nut.  Sometimes you feel like one, and sometimes you dont ;)  My friends are much more worried about my numbers than I am.
POZ since 1999
1/07 tcells: 530 vl: 72,922 7/07 tcells: 542 vl: 26,577
9/08 tcells: 339 vl: 56,120  7/09 tcells: 267 vl: 663,160
11/09 tcells: 71 vl: 498,670 2/10 tcells: 52 vl: 322,000
 no meds and feeling great!

Offline RapidRod

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Re: What's the best way to delay having to take meds?
« Reply #22 on: February 23, 2010, 05:28:15 PM »
I have a guy in my support group that has been poz 22 years and his tcells never declined. LUCKY HIM!  I have another 11 years and he is in the same boat.  My tcells were high for the first several years, then crashed all of a sudden.  I'm an on-and-off health nut.  Sometimes you feel like one, and sometimes you dont ;)  My friends are much more worried about my numbers than I am.
I can tell you what is going to happen without taking care of yourself and getting your CD4 up. You are going to contract an OI and you may survive and you may not. But it's your life or what's left of it.

Offline karry

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Re: What's the best way to delay having to take meds?
« Reply #23 on: February 23, 2010, 06:34:43 PM »
Just got my latest numbers - I came off medication after the pregnancy 2 months ago.  Cd4 864, viral load 63,000 (this is more or less what my numbers were before the pregnancy).  Obviously I don't need meds yet but I was wondering if there are measures that can be taken to keep my Cd4 high??  I heard that smoking can reduce it, I smoke a bit,not much.  Is there anything else?  I'd like to be able to avoid taking meds as long as possible.

Interesting question...I also asked my case manager same yesterday and she provided me with a lot of pamphlets to read about it. If I make any major discoveries I'll certain share with you, Tabooprincess ;).

Already I echo much of what most people are saying here: healthy options.
K.
Take it a day at a time....and be positive about it too!

Offline tednlou2

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Re: What's the best way to delay having to take meds?
« Reply #24 on: February 23, 2010, 11:39:21 PM »
I've heard many say they are co-infected with herpes.  Is this something very common and would you know it if ya had it?  I don't think I've ever been tested for it.  I haven't had any symptoms that would make me believe I have it.  Also, are any experts recommending herpes meds to slow HIV for people who aren't infected with herpes?

Just curious....

Offline Inchlingblue

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Re: What's the best way to delay having to take meds?
« Reply #25 on: February 24, 2010, 12:43:42 AM »
I've heard many say they are co-infected with herpes.  Is this something very common and would you know it if ya had it?  I don't think I've ever been tested for it.  I haven't had any symptoms that would make me believe I have it.  Also, are any experts recommending herpes meds to slow HIV for people who aren't infected with herpes?

Just curious....

You wouldn't necessarily know, not everyone has outbreaks. It's can be diagnosed through a blood test, you should ask your doctor. It's possible they have tested you for it already, I know my doctor routinely checks for all STDs as part of regular labs (which I need to talk to him about, because it's overkill).

Acyclovir has been shown to slow HIV progression in people co-infected with HIV and herpes. According to a 2008 study funded by the NIH, it's effect on HIV is when it is in its  phosphorylated form, which happens after it has been taken up by a cell infected with herpes viruses. So, no, it would not seem to work on HIV without the presence of herpes.

LINK:

http://www.nih.gov/news/health/sep2008/nichd-10.htm
« Last Edit: February 24, 2010, 12:56:35 AM by Inchlingblue »

Offline kuttakamina

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Re: What's the best way to delay having to take meds?
« Reply #26 on: February 24, 2010, 12:53:24 AM »
Very good question. Can one take acyclovir even without having herpes to see if it has any impact on one's CD4 counts?

Offline TabooPrincess

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Re: What's the best way to delay having to take meds?
« Reply #27 on: February 26, 2010, 06:50:19 AM »
You wouldn't necessarily know, not everyone has outbreaks. It's can be diagnosed through a blood test, you should ask your doctor. It's possible they have tested you for it already, I know my doctor routinely checks for all STDs as part of regular labs (which I need to talk to him about, because it's overkill).

Acyclovir has been shown to slow HIV progression in people co-infected with HIV and herpes. According to a 2008 study funded by the NIH, it's effect on HIV is when it is in its  phosphorylated form, which happens after it has been taken up by a cell infected with herpes viruses. So, no, it would not seem to work on HIV without the presence of herpes.

LINK:

http://www.nih.gov/news/health/sep2008/nichd-10.htm

Just out of interest, I've read that the dosage for a herpes infection is 400mg 5x day for 5 days. So does this study mean that taking just one or two tablets a day not only prevents an outbreak but slows hiv progression too? Then if you get an outbreak you need to increase the dosage to the larger amount?  Just general advice, I realise this would all need to be confirmed and agreed by a doctor!
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline Ann

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Re: What's the best way to delay having to take meds?
« Reply #28 on: February 26, 2010, 07:09:16 AM »
The 400mg 5x day for 5 days dosage is for when you feel an outbreak coming on. The 400mg x2 daily is the prophylactic dosage. A prophylactic is something taken or used to prevent some event - in this case, it prevents outbreaks from happening. Condoms are sometimes known as prophylactics - because they prevent pregnancy and STIs.

The five day dosage is used in people who only have the occasional outbreak and/or are hiv negative.

The prophylactic dose is used in people who have frequent outbreaks, and/or are hiv positive.

The five day dosage is not thought to affect hiv; it's the prophylactic dose that is thought to affect hiv.



edited for clarity
« Last Edit: February 26, 2010, 07:13:40 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 Inchlingblue

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Re: What's the best way to delay having to take meds?
« Reply #29 on: February 26, 2010, 10:34:20 AM »
What Ann said and I would add:

If you tried acyclovir to see if it might have an effect on slowing HIV progression (and controlling herpes), this would be a prophylactic dose, meaning every day.

It might be a good way to ease you into the reality of daily meds, which is something everyone with HIV (except elite controllers) eventually has to do.

The usual Acyclovir dose is 400 mg. twice a day. If your insurance covers Valtrex, this would be once a day. Valtrex is basically acyclovir but formulated for better absorption and it's not generic.

Missing doses of the herpes medication would not be as big of a deal as missing doses of HIV meds but it's still something you would want to avoid.

I think Ann said she takes acyclovir 400 mg once a day except during outbreaks. Maybe this is OK to do once it's been in your system for a while?

There have been cases of herpes becoming resistant to acyclovir when there's not enough drug levels so it's tricky.

Offline Ann

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Re: What's the best way to delay having to take meds?
« Reply #30 on: February 26, 2010, 11:22:51 AM »

I think Ann said she takes acyclovir 400 mg once a day except during outbreaks. Maybe this is OK to do once it's been in your system for a while?


I take 400mgs once a day unless I am ill or very stressed out. And I mean very stressed, as in the death of a close friend. If I don't start taking 400mgs twice a day under these circumstances, I tend to get an outbreak. Not always, but it sometimes happens if I forget to up my dose. I try to not let an outbreak start to happen.

The most recently it happened (a break-through outbreak) was when I had the winter vomiting virus at New Year. I forgot to up my dose, mainly because I was barely holding anything down for a few days, including my normal acyclovir dose. I can't remember the last time it happened.

And yes, I took it twice a day for... think it was about a year before I went to once a day.

Works for me, others may have a different experience. Both of my doctors know I do this.
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 leatherman

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Re: What's the best way to delay having to take meds?
« Reply #31 on: February 26, 2010, 11:36:32 AM »
I think Ann said she takes acyclovir 400 mg once a day except during outbreaks. Maybe this is OK to do once it's been in your system for a while?
When I was given acyclovir during an outbreak it was 400mg 3X day for 5 days
once I went onto it prophylactically, it was 400mg 1X daily

acyclovir normal dosage regimens can be prescribed as 400mg either once or twice daily. with many drugs, a doctor fine tuning the dosage based on an individual's weight, metabolism and results is not uncommon. Since each individual is slightly different, medicine is not always an exact science once it's put into practice. ;)

I'm just a skinny little guy with a high metabolism, so many "normal" dosages are "overdoses" for me. It's no wonder I was desperately ill on the full does of AZT or Sustiva mono-therapies. Usually, for me, half dosages of antibiotics are effective while the normal full dose causes many unwanted side effects along with resolving the issue. Of course your mileage may vary, so it pays to work closely with your doctor. ;)

I take 400mgs once a day unless I am ill or very stressed out. And I mean very stressed, as in the death of a close friend. ...
Works for me, others may have a different experience. Both of my doctors know I do this.
same sort of strategy that I use  ;) thankfully the acyclovir does keep the outbreaks in check, so "regular" stress no longer is an issue. It really has to be that extreme of a stress incident now to break through. Personally, I get an itchy sensation two days prior to my outbreak and have learned to quickly up the dosage. This strategy has worked for nearly 4 yrs now, except in a few rare cases, like you too Ann, when someone has died (and thrown my whole schedule off) or when I've been sick and vomiting (no sense in taking meds if you're just gonna puke them back out. ::) ROFL)
leatherman (aka mIkIE)


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

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline Jeton

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Re: What's the best way to delay having to take meds?
« Reply #32 on: February 27, 2010, 08:51:41 PM »
i think having a 63,000 viral load is bad no matter how strong ur immune system is. HIV produces a systemic invasion, not limited to the immunological tissues and body fluids. it's causing inflammation and doing damage with alien proteins released in its life-cycle, even if ur immune system is holding up.

the question of toxicity isn't the only reason to hold off meds...there's also the matter of adherence. the reasoning for withholding ARV from a healthy poz person may be realistic, but is still a bit atavistic: the fear is that u won't take adherence seriously until u get really sick...n thus u may produce resistant virus in urself n transmit it to others.

that wait comes at a cost to u: the longer u wait, the more damage the virus has a chance to do.

Offline Matty the Damned

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Re: What's the best way to delay having to take meds?
« Reply #33 on: February 27, 2010, 10:28:13 PM »
i think having a 63,000 viral load is bad no matter how strong ur immune system is. HIV produces a systemic invasion, not limited to the immunological tissues and body fluids. it's causing inflammation and doing damage with alien proteins released in its life-cycle, even if ur immune system is holding up.

the question of toxicity isn't the only reason to hold off meds...there's also the matter of adherence. the reasoning for withholding ARV from a healthy poz person may be realistic, but is still a bit atavistic: the fear is that u won't take adherence seriously until u get really sick...n thus u may produce resistant virus in urself n transmit it to others.

that wait comes at a cost to u: the longer u wait, the more damage the virus has a chance to do.

A viral load result on it's own is irrelevant. It's about change over time.

MtD

Offline Jeton

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Re: What's the best way to delay having to take meds?
« Reply #34 on: February 27, 2010, 10:33:18 PM »
A viral load result on it's own is irrelevant. It's about change over time.

MtD

uh, no...a static viral load of 60,000 is a static amount of active virus is ur system, doing it's predatory thing on u. in many or most people, HIV is always doing damage. how much is a function of viral load, immune strength, and personal genetics. in any given person, all other things being equal, a VL of 60,000 is ALWAYS worse than a viral load of 6,000, which is always worse than a VL of 600...etc.

Offline Matty the Damned

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Re: What's the best way to delay having to take meds?
« Reply #35 on: February 27, 2010, 10:35:52 PM »
uh, no...a static viral load of 60,000 is a static amount of active virus is ur system, doing it's predatory thing on u. in many or most people, HIV is always doing damage. how much is a function of viral load, immune strength, and personal genetics. in any given person, all other things being equal, a VL of 60,000 is ALWAYS worse than a viral load of 6,000, which is always worse than a VL of 600...etc.

You don't know what you're talking about. There is no point in engaging you any further.

MtD

Offline Jeton

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Re: What's the best way to delay having to take meds?
« Reply #36 on: February 27, 2010, 10:48:45 PM »
You don't know what you're talking about. There is no point in engaging you any further.

MtD


 ::) so ur claiming that viral load doesn't matter to HIV disease progression no matter what it is, as long as it doesn't change over time? do u even read the articles at this site?

Offline Inchlingblue

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Re: What's the best way to delay having to take meds?
« Reply #37 on: February 28, 2010, 12:13:44 AM »
It's possible that what Jeton is referring to is the recent findings further helping to confirm the fact that there's unseen damage caused by untreated HIV, even during early infection:

We have assumed that after somebody's infected that they have many, many years of what's called clinical latency -- many, many years when they're infected but they're actually doing well, or they appear to be doing well. It's only when they become sick, or they've advanced a bit with HIV, or advanced HIV, that then we start thinking of what other treatments we should provide them.

There are data now that seem to suggest that during that long period when the person appears to be quite well, there are ongoing processes in their bodies, due to HIV itself, due to the virus, that may be causing some damage, some unseen damage that may ultimately have a very large impact on a person's survival, and a person's wellness.


It's not clear whether or not initiating early ART would have an effect on this, but there's some data to suggest it could. I thought it was sobering when I read that untreated HIV makes approximately 10 billion new virus particles every day. So if you're not on meds and you have a viral load of, say, 600 copies/mL, can you imagine how hard your immune system is fighting?! Month after month and year after year of this seems taxing, to say the least. The body is basically in a constant state of inflammation and alert.

At the end of the day, the question of when to start treatment is still not definitively answered but it's good to know as much as possible when making the decision.

LINK:

HIV's Silent Dangers Make Early HIV Treatment Critical, Expert Says

A Discussion About Inflammation, Early Treatment and Universal Treatment Access -- Wafaa El-Sadr, M.D., M.P.H., United States


http://www.thebody.com/content/art52839.html
« Last Edit: February 28, 2010, 10:17:43 AM by Inchlingblue »

Offline Jeton

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Re: What's the best way to delay having to take meds?
« Reply #38 on: February 28, 2010, 12:26:37 AM »
I think what Jeton is referring to is the recent findings further helping to confirm the fact that there's unseen damage caused by untreated HIV, even during early infection:

We have assumed that after somebody's infected that they have many, many years of what's called clinical latency -- many, many years when they're infected but they're actually doing well, or they appear to be doing well. It's only when they become sick, or they've advanced a bit with HIV, or advanced HIV, that then we start thinking of what other treatments we should provide them.

There are data now that seem to suggest that during that long period when the person appears to be quite well, there are ongoing processes in their bodies, due to HIV itself, due to the virus, that may be causing some damage, some unseen damage that may ultimately have a very large impact on a person's survival, and a person's wellness.


It's not clear whether or not initiating early ART would have an effect on this, but there's some data to suggest it could. I thought it was sobering when I read that untreated HIV makes approximately 10 billion new virus particles every day in an infected person. So if you're not on meds and you have a viral load of, say, 600 copies/mL, can you imagine how hard your immune system is fighting?! Month after month and year after year of this seems taxing, to say the least.

At the end of the day, the question of when to start treatment is still not definitively answered but it's good to know as much as possible when making the decision.

LINK:

HIV's Silent Dangers Make Early HIV Treatment Critical, Expert Says

A Discussion About Inflammation, Early Treatment and Universal Treatment Access -- Wafaa El-Sadr, M.D., M.P.H., United States


http://www.thebody.com/content/art52839.html

nice to see u in here, Inch...i'm kinda shocked at the amount of cult-like adherence to ancient treatment n prevention paradigms in here. message board dynamics r the same everywhere, of course...but on a site that survey'd it's own readership months back n found hiv stigma to be the single biggest obstacle facing the poz community, there's an admin here (Ann) who told someone here (who may himself be a troll) that hiv stigma is NOT a problem for poz people who aren't ashamed of their status!

it's like the 80's New Age charlatans who told AIDS patients that they were dying "because their bodies r telling the Universe that they WANT to die"...some crazy shit here.

Offline Hellraiser

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Re: What's the best way to delay having to take meds?
« Reply #39 on: February 28, 2010, 12:50:27 AM »
nice to see u in here, Inch...i'm kinda shocked at the amount of cult-like adherence to ancient treatment n prevention paradigms in here. message board dynamics r the same everywhere, of course...but on a site that survey'd it's own readership months back n found hiv stigma to be the single biggest obstacle facing the poz community, there's an admin here (Ann) who told someone here (who may himself be a troll) that hiv stigma is NOT a problem for poz people who aren't ashamed of their status!

it's like the 80's New Age charlatans who told AIDS patients that they were dying "because their bodies r telling the Universe that they WANT to die"...some crazy shit here.

You're just making friends everywhere aren't you.  You know what I think you're totally right and people with a suppressed Viral Load should just fuck like bunnies without the use of condoms.  That way we can insure that no one will catch the virus, much safer than prophylactic condom use!

I'm following Livebythemoon's example and putting you on ignore before I have half a mind to tell you what I really think of you.

Offline Jeton

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Re: What's the best way to delay having to take meds?
« Reply #40 on: February 28, 2010, 12:54:28 AM »
You're just making friends everywhere aren't you.  You know what I think you're totally right and people with a suppressed Viral Load should just fuck like bunnies without the use of condoms.  That way we can insure that no one will catch the virus, much safer than prophylactic condom use!

I'm following Livebythemoon's example and putting you on ignore before I have half a mind to tell you what I really think of you.

what, u gonna call me a "sock-puppet" too? stop falsely attributing statements to me n trying arguing like an adult. 3 different people lose an argument n react with fingers in their ears..."lal lalalalalalala SOCK PUPPET lalalalala IGNORE LAALALALALA"

 ::)

Offline TabooPrincess

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Re: What's the best way to delay having to take meds?
« Reply #41 on: March 01, 2010, 11:30:27 AM »
what, u gonna call me a "sock-puppet" too? stop falsely attributing statements to me n trying arguing like an adult. 3 different people lose an argument n react with fingers in their ears..."lal lalalalalalala SOCK PUPPET lalalalala IGNORE LAALALALALA"

 ::)


Errr,can we get back to my original question which was not about starting meds/adherance(and whatever nonsense that is up there ^^^) but practical tips from others who have been in the same boat that may be helpful to delaying it.  Thanks for your input but you are a little insensitive in your replies.
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline Poz Brit

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Re: What's the best way to delay having to take meds?
« Reply #42 on: March 04, 2010, 08:32:39 PM »
I had my diagnosis four years ago, but have been told I have been positive for 17 years now, and have just started on meds, tried to avoid them, i don,t really know why? now i'm taking them there is no difference, just 4 more pills to add to to 70a day I have to take any way. don,t notice them. don.t feel any better, but my numbers are moving in the right direction.

 


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