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Author Topic: Surviving With No Meds  (Read 4506 times)

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Offline HealQuest

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  • Posts: 1
Surviving With No Meds
« on: June 11, 2008, 11:46:25 AM »
Hi I am new to this site. I have visited this site over the passed few years. My question is for Long term non progressors or anyone that has NEVER taken meds or has stopped taking them a few times.  What was the longest time you were able to stay off? Did any of you take supplements that seemed to help you stay off longer? I have been off of my meds for over a year now. The only bad thing is, it doesnt seem like i will get to stay off for 2 or more years like i had hoped for.

When i started HAART back in 2005 my Tcellls were at 260 and VL was 49,000.  The Highest they ever got was 700 and most of the time were in the 500s and Undetectable.  My doctor always seemed upset everytime i told him i wanted to stop because of side effects. Told me i would be off for 2 or 3 months at the most. Said my tcells would shoot back to 260 and VL back to 49,000 or more within the first 2 months and would have to get back on. Well 3 months passed and was still in 500s and undetectable. After 6 months same results. Then after 9 months i saw it creeping back. Tcells mid 400s and VL at 9,000. and after 12 months 360 tcells and VL 12,000.

I really am not looking forward to going back on the meds. I'm sure there are several of you that have been in the same situation. This passed year off of meds have been wonderful. I still feel great other than when my doctor opens his mouth and the bad news comes out.  The first few weeks after stopping was fantastic. The constant buzz was slowly creeping out of my body. The shortness of breath was going away and everything was starting to look clear again. The daily haze that i had gotten used to was finally going away. It felt so great to feel healthy again and not feel crappy.

All i know now is that i am scared to go back on. Why do these pills have to be so strong? There has to be a better way.

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Surviving With No Meds
« Reply #1 on: June 11, 2008, 12:09:35 PM »
Hello, welcome to the boards.

Could you be more specific as to what side effects you were experiencing that were so severe you felt the need to halt treatment?  And specifically what you and your doctor tried to do to address these side effects before making the decision to halt treatment.  This will help us in the thread's discussion going forward.

Thanks.
"Iíve slept with enough men to know that Iím not gay"

Offline redhotmuslbear

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Re: Surviving With No Meds
« Reply #2 on: June 11, 2008, 03:09:44 PM »
Then after 9 months i saw it creeping back. Tcells mid 400s and VL at 9,000. and after 12 months 360 tcells and VL 12,000.
I really am not looking forward to going back on the meds. I'm sure there are several of you that have been in the same situation. This passed year off of meds have been wonderful. I still feel great other than when my doctor opens his mouth and the bad news comes out.  The first few weeks after stopping was fantastic. The constant buzz was slowly creeping out of my body. The shortness of breath was going away and everything was starting to look clear again. The daily haze that i had gotten used to was finally going away. It felt so great to feel healthy again and not feel crappy.
All i know now is that i am scared to go back on. Why do these pills have to be so strong? There has to be a better way.

HQ,
Your numbers suggest HIV disease progression, and there is no "supplement" to halt HIV, no "better way," only anti-retroviral drugs.  The drugs do not need to leave you with such harsh side effects as you describe, though.  There are options unlikely to leave you in a haze or running to the toilet every couple of hours, too. 

Learn more about capable HAART regimens and discuss your concerns openly with your doctor.  If the doctor cannot hear them and work with them, perhaps another docto is in line.

Best,
David
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline Winiroo

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    • http://winiroo.synthasite.com/
Re: Surviving With No Meds
« Reply #3 on: June 11, 2008, 03:34:55 PM »
I'm curious if you ever tried more than one cocktail. Is it possible that the one you where on was one you where not tolerant with.
I know for me some combos affected me more negatively than others.
Some I had no adverse reaction to at all aside from hating to take the pills.


http://cmd.shutterfly.com/commands/pictures/slideshow?site=winiroo&page=winiroo&album=21
ďBeing powerful is like being a lady. If you have to tell people you are, you aren't.Ē Margaret Thatcher

Offline aztecan

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  • 28 years positive, 56 years a pain in the butt
Re: Surviving With No Meds
« Reply #4 on: June 12, 2008, 08:43:34 PM »
Hey Heal,

What meds were you taking? I would wager it included Sustiva (Stocrin outside the U.S.) somewhere in there, such as Atripla or Sustiva/Truvada or some such.

There are many options open to you rather than just taking the one regimen or not taking meds at all. You are not a long-term non-progressor, as shown by your need for meds to begin with, so some sort of regimen is in your future.

I know some folks who have eschewed meds, looking for "alternatives." Unfortunately, there are none and most of the folks who have done this are not around to talk about it any longer.

The fact is, the ARVs are the only method we have of controlling the replication of HIV in the human body. Nothing else has been proved to do so - no supplements, alternative/complementary therapies, or simply ignoring it.

By the way, the latter, just ignoring it, may sound fine. But then the other shoe will eventually drop.

Some say this is letting nature take its course. OK, but put all thoughts of Bambi and a kinder, gentler ending of your life out of your mind. In the case of advanced HIV disease, nature is a bitch, plain and simple.

I myself have been on meds for 12 years now, most of that time on a PI-based regimen. There were times I really wanted to take a drug holiday. But, I saw too many people crater and die from a lack of meds to ever seriously consider doing it.

So, maybe you could fill us in on what meds you were taking and whether you and your doc ever discussed any alternative regimens.  It would make discussing the issues a bit easier.

HUGS,

Mark
« Last Edit: June 14, 2008, 01:18:31 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline chadly

  • Member
  • Posts: 35
Re: Surviving With No Meds
« Reply #5 on: June 12, 2008, 09:44:11 PM »
Hi Heal-

Besides the posted suggestions/questions above,   I'd be curious how long your were on your regimen originally.
Over the first couple months,  many of my side effects lessened-   some completely disappeared!

Offline Etay1207

  • Member
  • Posts: 131
Re: Surviving With No Meds
« Reply #6 on: December 16, 2009, 02:28:55 PM »
I've been poz going on 11 years and have never taken meds.  My numbers would scare anybody to death tcells: 71 VL: 500,000   My doctor perscribed me a bunch of stuff.  Batrium, a cocktail, and an injection.  I don't plan on filling any of those percriptions  ;D  Despite the numbers, I am healthier now than I've ever been!
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 sharkdiver

  • Member
  • Posts: 1,350
Re: Surviving With No Meds
« Reply #7 on: December 16, 2009, 02:48:17 PM »
You do realize that this is a very old thread and the OP has not posted since then and he was NOT an LTS

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 23,840
Re: Surviving With No Meds
« Reply #8 on: December 16, 2009, 07:50:11 PM »
Hi All,

We've had some complaints about this old thread having been reactivated. I am locking it now.

Etay, I suggest you begin a new thread of your own in LIVING WITH HIV to discuss whatever you want to say. It's a better place for those who may want to comment and respond to what you have to say.

Thanks for the cooperation of all.
Andy Velez

 


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