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Author Topic: having thoughts of stopping meds  (Read 66377 times)

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Offline PozJeepGuy

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having thoughts of stopping meds
« on: May 09, 2011, 03:40:51 am »
For the last month i have started to think about stopping my meds for a few reasons.  When I first got the news and after very little research I made my mind up fast to start meds.  Now after meeting more positive people, learning more, and over all experience I'm doubting my decision.  I always thought diagnose=meds.  I now hear people who have been positive for years no decades saying they never even started meds yet.  Not to mention the fact that everytime I open those damn bottles its just that reminder, but then I worry somewhat on a few levels on quitting.  One being the whole resistant thing, another being the fear of catching something and just getting sick. 

I read someones post when I asked about starting meds and I can remember it clear as day.  "once you start its taking that pill for the rest of your life."  Now looking back I really wish I would have taken that more into consideration.  I see new people coming to the forums and asking about meds.... As someone just starting this process, stop and do some real soul searching on this one.  Its not as easy as it may appear. 

I am currently on a drug study which ends in 6 month es.  So I know I won't do anything till then, but I'm wondering if anyone was on meds then quit and how are things going.  I know each experience is different but I want to hear what you all think. 

yes and I know to discuss this with the doctor.  I didn't listen before but ears and eyes are open to your thoughts
Jake

Offline mecch

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Re: having thoughts of stopping meds
« Reply #1 on: May 09, 2011, 04:40:48 am »
You explain some of your fears about what might happen if you stop.

You don't explain the reasons why you want to stop.  Care to share?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline PozJeepGuy

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Re: having thoughts of stopping meds
« Reply #2 on: May 09, 2011, 04:51:56 am »
i feel taking the pills says I'm sick, when in fact my number are solid.  I have been thinking about the other side of the debate which is why not let you body work it magic.  Maybe I shouldn't underestimate what it can do.  I feel alot of the feeling (nausea,Numbers from time to time, etc) are more associated with the meds then the bug. just to start
Jake

Offline J.R.E.

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Re: having thoughts of stopping meds
« Reply #3 on: May 09, 2011, 05:26:46 am »
Hey Jake,

Your numbers are solid, because you are on medication.  Since you have started on medication, you have remained undetectable. Your numbers are fantastic, once again, that's because of the medication. This is the ultimate goal of HIV medications, to achieve an undetectable viral load.

As far as "letting the body work it's magic" ,  It ain't gonna happen. HIV, ( unless you were some sort of elite controller),  continues to replicate, without the intervention of HIV medication.


You stated "I feel the pills says I'm sick. You actually became sick (whether you want to believe that or not, the day you became infected with this virus)


Continue on your medication, and have some further discussions, with you doctor, on the next phase after this study ends.  I would also mention to your doctor these thoughts your having , about stopping medications. I feel it's important for the doctor to understand what's going on in your head.

 I understand where you coming from, but these thoughts, are not healthy thoughts. I repeat once again, without medication, your viral load will go up, your t-cell and percentage will go down, and those very solid and good numbers you have, won't be there.

Just my thoughts...


Hang in there----Ray
Current Meds ; Viramune / Epzicom Eliquis, Diltiazem. Pravastatin 80mg, Ezetimibe. UPDATED 2/18/24
 Tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of Oct 2nd, 2023, Viral load Undetectable.
CD 4 @676 /  CD4 % @ 18 %
Lymphocytes,absolute-3815 (within range)


72 YEARS YOUNG

Offline Matty the Damned

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Re: having thoughts of stopping meds
« Reply #4 on: May 09, 2011, 05:34:44 am »
I stopped taking medications back at the end of 2004. For a while things were OK.

And then in mid 2006 things my numbers started to decline. By the end of 2006 I had almost no CD4 cells and a viral load that was above the top limit of the test.

It happened very quickly.

And I was very ill. It was tiresome. I've never been the same since.

I was told to restart meds, which I did, and that was tiresome too. But it worked.

Now your mileage may vary. You may be one of the lucky few who can potter along for years sans meds and be fine.

More likely you will not be. Letting your immune system get arse raped by the virus is a Bad Idea. You'll never get it back quite like it was before. As anyone who has done it will tell you, getting a wopping dose of AIDS changes you in eerie fundamental ways.

You're forever altered.

If that doesn't help you decide, consider the case of our very own Emery.

MtD

Offline sam66

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Re: having thoughts of stopping meds
« Reply #5 on: May 09, 2011, 06:08:04 am »
     Thanks for that post about Etay;   Matty ,  I did not realise he had passed away,  I remember reading his posts and how all you guys (LTS) tried to persuade him to change his ways .

  very sad.

     theres a perfect example of how you can live apparently normally without meds with HIV, but it will strike you down
    like a bolt of lightning out of the blue.
« Last Edit: May 09, 2011, 06:50:19 am by sam66 »
december 2007 diagnosed +ve ,

Offline Ann

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Re: having thoughts of stopping meds
« Reply #6 on: May 09, 2011, 08:16:32 am »
     

     theres a perfect example of how you can live apparently normally without meds with HIV, but it will strike you down
    like a bolt of lightning out of the blue.


It's not going to "strike you down like a lightening bolt out of the blue" if you are being regularly monitored and go on meds when your numbers say it's time. Etay died because he refused to believe that it was time for meds when he only had a handful of CD4 cells.

I've been poz for fourteen years now and I'm still not on meds. I may be soon, and we're watching my numbers closely. But I've had years without meds because my doctor and I refused to jump on the med wagon when I was first diagnosed. And I'm doing well.

Not everyone can go fourteen years, I know. But people who start meds when newly diagnosed and especially newly infected and diagnosed will never know how long they might have had before they actually needed meds.

I've read mixed reports on whether or not someone who started with good numbers or early in infection** can safely go off meds. I've heard some reports that it's not a good idea as your VL will skyrocket and your CD4s plummet. (I would imagine maybe your body forgets how to deal with hiv on its own while you're on meds - but that's just conjecture on my part.)

** Let's be clear here, I'm talking about people who start meds during acute infection (such as the OP) or people who start when in a more settled infection and have good numbers. I am NOT talking about someone who started with poor numbers where ARVs were advised in accordance with clinical guidelines.

On the other hand, I have heard reports - some of them first-hand - where women who went on ARVs solely because of pregnancy (and not because their numbers indicated the need) were able to go off meds after delivery and had no problem in maintaining good numbers.

If my conjecture above has any basis in fact, it may be that women who initiate ARVs during pregnancy and cease ARVs after delivery have only been on the ARVs six to eight months and maybe this isn't long enough for the body to "forget" how to deal with hiv.

My advice to the OP is first of all, talk this over with your doctor. Do not go off meds without his or her supervision - and note I say supervision, not approval. Your doctor's supervision will prevent you from developing resistance. If you do decide to go off meds, make sure you're closely monitored, particularly in the first few months. Do not ever go more than three months without having labs done while not on meds.

Ultimately, it's up to you.



edited for clarity
« Last Edit: May 09, 2011, 08:23:11 am by Ann »
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Matty the Damned

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Re: having thoughts of stopping meds
« Reply #7 on: May 09, 2011, 08:29:46 am »
     Thanks for that post about Etay;   Matty ,  I did not realise he had passed away,  I remember reading his posts and how all you guys (LTS) tried to persuade him to change his ways .

  very sad.

     theres a perfect example of how you can live apparently normally without meds with HIV, but it will strike you down
    like a bolt of lightning out of the blue.

Etay was not struck down by a "bolt of lightning out of the blue". He was warned but he knew better than the rest of us.

He died.

Now I'm not suggest that the OP is in the same boat, but Emery's case is instructive.

My case is instructive.

The OP asked for experiences of ceasing treatment and I shared mine.

HIV is nothing to be trifled with. There is plenty of scope to test out one's limits and try various things. But folks should not be deceived.

This is a fatal disease when not treated.

The consequences of tarrying unduly when it comes to treatment are very serious.

Think carefully. Consult wisely. Do not pretend to yourself that you're cleverer than you really are.

You may not live to regret it.

MtD

Offline sam66

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Re: having thoughts of stopping meds
« Reply #8 on: May 09, 2011, 08:50:36 am »

 Yes Ann, Matty
                        I should have said it will strike you down, when when your cd4's and cd%  get near the zero mark.  ofcourse you should be monitored when you get near the low end, if you are not on meds by then, it will strike you down.
december 2007 diagnosed +ve ,

Offline wolfter

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Re: having thoughts of stopping meds
« Reply #9 on: May 09, 2011, 09:06:28 am »
Having survived almost a decade without the option of meds, I have a difficult time understanding the dynamics of this debate.  Perhaps it's the memories of the beautiful faces of so many friends dying and knowing there wasn't an option.  I wish you the best with your decision.  

I remained strong and healthy for a long time because of the treatments that became available through the years and had been undetectable for a long time.  I had some sort of psychological collapse when Bill died.  I suffered severe depression and stopped taking care of myself including stopping my meds.  I don't know if I've ever shared this before because it's my ignorance that caused me to get so sick and I'm embarrassed about that fact.  Within a year, I only had a handfull of tcells and a vl of 6.7 Mil.  

Anecdotal doesn't equate  to scientific proof, but this was my reality.  Good luck my friend.

Greg
Being honest is not wronging others, continuing the dishonesty is.

Offline newt

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Re: having thoughts of stopping meds
« Reply #10 on: May 09, 2011, 09:16:28 am »
Hello

The 10 years before meds thing is a myth. About 1 in 5 people will need treatment 1-2 years after infection (erm, infection not  diagnosis). 1 in 2 will need to start treatment after 2-10 years, on average after 5 years. About 1 in 4 can stay well  without treatment for longer. There is no way to say where in this distribution you will fall.

When you stop treatment your CD4 count falls rapidly to the level it was it before starting meds. Your CD4 count was high before you started meds, so this won't be a problem. Also, your viral load will tend to return to its pre-treatment level.

The other caution, which I am sure your doc will emphasise, is the risks connected with the virus flaring up again. In the SMART study, which looked at treatment breaks, people who went off meds did rather badly on this score (about 2 x as bad as people who stuck with them). But it has to be said most of the people in this study had much lower CD4 counts and higher pre-treatment viral loads than yours, among other things that were different.

If you started treatment within about 6 months of acquiring the virus then I think you are in a whole different ballgame regarding stopping. This is in effect a short course of early treatment and prob neither here nor there long term, indeed, it is possibly beneficial to have done this if you do stop.

On the other hand, why kick a good thing in a small bottle or two? The meds have done wonders for your CD4 count and hammered your virus into the ground.

So then, is the problem the HIV in your thoughts and feelings, rather than what's left of it in your body? Do you need to not be on meds to feel less AIDSy/more normal and get your head round the experience so far (or even just, for a bit, escape it and the stuff that led up to it << fair enough to want this), or is there another way to work this through?

- matt
« Last Edit: May 09, 2011, 09:18:16 am by newt »
"The object is to be a well patient, not a good patient"

Offline SunnyFlorida

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Re: having thoughts of stopping meds
« Reply #11 on: May 09, 2011, 09:22:59 am »
I'm in no position to be dispensing meds-related advice since I'm not poz, so I have no experience to draw from. However, I can say this... I agree with Ann wholeheartedly. Talk to your doctor, and if you absolutely feel like you should get off the meds, do so with supervision as she recommended. The last thing you want is your HIV to develop resistance to the meds you're taking, forcing you to take other ones, those that could possibly do more harm to your body.

i feel taking the pills says I'm sick, when in fact my number are solid.  I have been thinking about the other side of the debate which is why not let you body work it magic.  Maybe I shouldn't underestimate what it can do.  I feel alot of the feeling (nausea,Numbers from time to time, etc) are more associated with the meds then the bug. just to start

As somebody who has experience in psychology, I do recommend that you seek some sort of psychological help. Perhaps through your local ASO or your doctor. You mentioned that opening the pills says you're sick. That's a psychological barrier you need to deal with as soon as possible. All I want is for you to stay healthy, and should you ultimately decide to get off the meds, that will change. You may feel good for some time, but things will go downhill eventually. I don't want to see you go down the path that Etay did. Please, think long and hard before you make that decision. Think of yourself, your friends and loved ones. This is not to be taken lightly.

Offline Ann

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Re: having thoughts of stopping meds
« Reply #12 on: May 09, 2011, 09:37:28 am »
You mentioned that opening the pills says you're sick. That's a psychological barrier you need to deal with as soon as possible.

Sunny's post made me realise I meant to say something about this earlier.

Jake, would you feel sick if you were taking vitamins? You're taking something to STOP you from getting sick. Try looking at it that way.
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 metekrop

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Re: having thoughts of stopping meds
« Reply #13 on: May 09, 2011, 10:07:29 am »
Yea, May be you can stop.  Your numbers are great.  CD count 1014 is very good number.  But you would definitely start again when your numbers are depleted to 50 or less and experiencing what death is looking like.   ;)
« Last Edit: May 09, 2011, 10:09:15 am by metekrop »
Diag.on 12/8, 2000, CD 440 VL 44K, No Meds
12/08 - 2/09 CD< 50 & VL >500k hosp'z.
St. Atripla - 7/09 CD 179, VL 197k
10/09 CD 300 VL U
3/10 468 U
8/10 460 U
12/10 492 U
3/11 636 U
8/11 530 U
1/12  616 U
7/12 640 U
12/12 669 U
5/13 711 U
11/13 663 U
4/14  797 U
10/14 810 U
4/15 671 U
10/15 694 U
3/16 768 U
8/16 459 U
2/22 780 U
8/31 940 U
2/26 809 U
8/18 882 U
3/28 718 U
8/15 778 U
2/25 920 70
8/11 793 U
2/22 690 U
6/8 834 U

Offline mikeyb39

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Re: having thoughts of stopping meds
« Reply #14 on: May 09, 2011, 10:23:33 am »
hi all,
I didn't really have the choice to not start meds at my time of diagnosis since my CD'S were so low. I just come off of having shingles, doctor says more than likely due to immune reconstruction syndrome or something like that.  It was very painful and I'm going to do everything i can to keep OI'S for coming into my life.

As much as folks want to put HIV in the back of their minds, unfortunately this disease will happily remind you that its still around.  If taking this big pink pill every night serves as a reminder of what i have, then so be it.  I'm very thankful that at least i do have something to take at this point.  I know whats its like to have low CD4's, i was extremely tired all the time, i lost about 30 pounds, it was not a fun time.  I'm just now starting to go in the right direction since I've only been on meds for 5 months, but I'm excited about knowing where my numbers might be in the next month or so.  I'm finally starting to feel like I'm getting back to some type of normalcy

I know everyone has different opinions on when to start, i guess since I didn't really have a choice it was an easy decision for me.  I trust my doctor like a family member he has been dealing with HIV/AIDS from the beginning.  He assures me that having a High active viral load for years and years is doing more harm to your body even-though you may not feel it at the time.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD
09/05/2014 switched meds isentress, prezcobix -still only two antivirals
10/14/2015  cd4-600 , VL-UD

Offline newt

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Re: having thoughts of stopping meds
« Reply #15 on: May 09, 2011, 10:31:31 am »
I wish people would lay off the drop-and-die stuff. PozJeepGuy has a reasonable concern to my mind that he started meds straight after diagnosis more or less and was/is it necessary at this point? His CD4 count was well over 500 when he started, and guidelines-wise, this is a 50/50 call in the States and a no-treatment-yet call in Europe (at the moment).

- matt
"The object is to be a well patient, not a good patient"

Offline PozJeepGuy

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Re: having thoughts of stopping meds
« Reply #16 on: May 09, 2011, 11:23:44 am »
First thank you for the responses. I wouldn't do it without talking to my doctor. I am learning quick thow talking to my doctor is one thing and asking those who have dealt or are dealing with it it to be another thing. Its not something I'm taking lightly but if at some point I will have to (and I mean have to) take pills why not wait to that point. I am seeing a psychologist and we are discussing this as well. Like I said organially I didn't listen before and now I just wondering what the general con sistents is. But I keep coming back to what if I could go another 5 years without meds. Not deal with the side effects of meds. The one thing I'm not hearing is I stopped and.it messed everything up. I'm hearing or my precpetion is you will get worse but go back on meds and thing will be OK again.
Jake

Offline David_CA

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Re: having thoughts of stopping meds
« Reply #17 on: May 09, 2011, 11:30:20 am »
Jeep,

Do you have an idea of when you might have been infected or when your last negative test was?  I'm curious as to how long you might have been positive before diagnosis.

I was one of those who had to start meds fairly quickly after diagnosis / infection.  Based on my last negative test, I may have been infected at the most 2.5 years before diagnosis.  I also had to start meds 9 months after diagnosis. 
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline PozJeepGuy

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Re: having thoughts of stopping meds
« Reply #18 on: May 09, 2011, 12:07:55 pm »
January of 2010 I tested neg. September of 2010 positive. Doctor thinks I became positive October 2009 give or take a few months. That's another reason for thinking it would be OK to stop fir a few years as well
Jake

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #19 on: May 09, 2011, 12:35:05 pm »
The meds have ... hammered your virus into the ground.

It is important to be careful about making this statement since it is not scientifically correct.
ARVs act on HIV in plasma *only*. They have absolutely no effect on HIV anywhere else in the body - in the Gut Mucosal Lining and lymph glands for example. It is why ARVs are not at all a 'cure' for HIV and they do not, at any time, clear the body of what is classed as HIV. Research continues on ways, if possible, of attacking HIV in all the other reservoirs in the human body. That's why stem cell research continues, which in certain complex and currently expensive ways, holds out the hope of clearing HIV.
GcMAF (Serum Gc protein (known as vitamin D3-binding protein) macrophage-activating factor) is another area of promising research.
« Last Edit: May 09, 2011, 12:36:55 pm by Matt39 »

Offline drewm

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Re: having thoughts of stopping meds
« Reply #20 on: May 09, 2011, 12:45:37 pm »
Etay was not struck down by a "bolt of lightning out of the blue". He was warned but he knew better than the rest of us.

He died.

Now I'm not suggest that the OP is in the same boat, but Emery's case is instructive.

My case is instructive.

The OP asked for experiences of ceasing treatment and I shared mine.

HIV is nothing to be trifled with. There is plenty of scope to test out one's limits and try various things. But folks should not be deceived.

This is a fatal disease when not treated.

The consequences of tarrying unduly when it comes to treatment are very serious.

Think carefully. Consult wisely. Do not pretend to yourself that you're cleverer than you really are.

You may not live to regret it.

MtD

I'm with Matty on this if for no other reason than this bug is NOT to be trifled with. In the end, of course, it is the decision of the OP but meds turn back the clock on this disease. This bug will kill you if it ever gets the upper hand so I, personally, see no reason to ever give IT the chance.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX -  FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline Ann

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Re: having thoughts of stopping meds
« Reply #21 on: May 09, 2011, 12:47:31 pm »
Jake, things don't have to "get worse" before you go back on meds. As long as you're being regularly monitored, it shouldn't get to that point. You can start when your CD4 show a trend of staying between 350 and 500. You'll catch the trend with regular monitoring.
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Offline David_CA

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Re: having thoughts of stopping meds
« Reply #22 on: May 09, 2011, 01:32:51 pm »
It is important to be careful about making this statement since it is not scientifically correct.
ARVs act on HIV in plasma *only*. They have absolutely no effect on HIV anywhere else in the body - in the Gut Mucosal Lining and lymph glands for example. It is why ARVs are not at all a 'cure' for HIV and they do not, at any time, clear the body of what is classed as HIV. Research continues on ways, if possible, of attacking HIV in all the other reservoirs in the human body. That's why stem cell research continues, which in certain complex and currently expensive ways, holds out the hope of clearing HIV.
GcMAF (Serum Gc protein (known as vitamin D3-binding protein) macrophage-activating factor) is another area of promising research.
Didn't that Swiss study completely disagree that ARV's have no effect of HIV anywhere else in the body?  If it didn't, wouldn't their results have been different?  Here's one summary of the study I'm referring to:
http://www.aidsmap.com/Swiss-experts-say-individuals-with-undetectable-viral-load-and-no-STI-cannot-transmit-HIV-during-sex/page/1429357/.  I don't think that anybody is suggesting that ARV's eradicate HIV, but rather suppress it to such low levels that very, very few infections were noted in heterosexual intercourse (along with some other specifics... no other STD's, etc).
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  Atripla started 12-01-2006
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Offline mecch

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Re: having thoughts of stopping meds
« Reply #23 on: May 09, 2011, 01:44:34 pm »
The one thing I'm not hearing is I stopped and.it messed everything up. I'm hearing or my precpetion is you will get worse but go back on meds and thing will be OK again.

Read again, then.  HAART has side effects and potential long-term disadvantages.  Choosing an active HIV infection (until the threshhold for treatment is reached) has long-term disadvantages.

Nobody is guaranteeing that you can just stop and start whenever your psyche wills it, and everything will always be "OK".  

Your doc made a cost benefit analysis in the first situation, putting you on HAART.  So best you clearly enunciate what the benefit of that was, and the cost.  You mention side effects but you don't specify.  Do you have any?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Buckmark

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Re: having thoughts of stopping meds
« Reply #24 on: May 09, 2011, 01:49:54 pm »
I believe the US government's guidelines for initiating HAART indicate treatment is recommended when an individual's CD4 count is at 500, and treatment should be started when the CD4 count is 350. 

http://aidsinfo.nih.gov/contentfiles/AdultandAdolescentGL.pdf

Since PozJeepGuy's CD4 is higher than 500, it's not entirely unreasonable to think about stopping meds.  But as everyone else has mentioned, regular monitoring and labs are essential, and you need to be prepared to start meds when the times comes.  "Letting nature run its course" leads to only one thing when you have HIV:  death.

If you started meds because you were diagnosed HIV positive and were jumping on the meds bandwagon, then I think it is reasonable have a discussion with your doctor about stopping them.  But you really need to think about the reasons why.  If it is because taking the pills remind you that you are HIV+, you must realize that you will be HIV+ whether or not you are taking meds.  If you're still having trouble dealing with being HIV+ and how that came to be, then that's something you will need to explore and accept.  It will be with you for the rest of your life.

Regards,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
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Offline Joe K

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Re: having thoughts of stopping meds
« Reply #25 on: May 09, 2011, 01:51:56 pm »
I wish people would lay off the drop-and-die stuff. PozJeepGuy has a reasonable concern to my mind that he started meds straight after diagnosis more or less and was/is it necessary at this point? His CD4 count was well over 500 when he started, and guidelines-wise, this is a 50/50 call in the States and a no-treatment-yet call in Europe (at the moment).

- matt


Hey Jake,

For me, Matt says it all right here. I suggest that you do what you and your doctor decide is right for you. You are in a unique situation and if that offers you an option, of stopping meds, without threatening your health, then that is an option that should be seriously considered. What others do, or experience, is only illustrative, as they are not you. Brass rings sometimes present themselves in the most unlikely places. This might just be one that you want to grab.

Offline mecch

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Re: having thoughts of stopping meds
« Reply #26 on: May 09, 2011, 01:59:55 pm »
Definitions of self. Self perception. One's will.  All of these are perfectly valid input for accepting or refusing treatment.  But sufficient?

My impression just a few years HIV+ is that some people who maintain active HIV infection, in a informed decision to avoid HAART until necessary - get on well enough and others experience one problem after another.  Shingles. Poor digestion.  Fatigue. Etc etc.  

So its all about how you individually might be able to make a go of it without meds, and for how long.

Also, just be perfectly clear to yourself what your justifications are, and be content with your choice.  And go back on the meds when you need them.  

You have to accept that there is no perfect solution to the imperfect situation.  You got the HIV, so its either active infection or HAART.  

Too many times I have seen people suffering various ills on a daily basis in order to avoid starting treatment for some psychological reason.  If its financial, I can understand.  Psychological - it seems to me that some justifications are sound, and some are phobias that best be dealt with.

The referred to ETAY, he has some very strong phobias and delusions.  




“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline sam66

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Re: having thoughts of stopping meds
« Reply #27 on: May 09, 2011, 02:15:42 pm »


  you must realize that you will be HIV+ whether or not you are taking meds.
Regards,

Henry

    Good point Henry, we have to accept that fact.
    I read somewhere some times it can take up to three years to come to terms with the shock of being    +ve. Like a death of a loved one or even the break up of a serious relationship.

 


december 2007 diagnosed +ve ,

Offline bmancanfly

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Re: having thoughts of stopping meds
« Reply #28 on: May 09, 2011, 03:45:57 pm »
I don't think you've given a very compelling rationale for wanting to stop.  Simply not wanting a daily reminder of being HIV+ doesn't seem like a very good reason to stop meds to me.  You've had a stellar response from HAART.  Why would you want to let your VL go unchecked?  Uncontrolled viremia is not without it's risks.

You seem to be looking for a Mulligan here.  That being,  that you can stop meds and be assured that,  when need be,  you can restart meds without any detrimental health effects.  No one can give you that guarantee.

Next to becoming poz,  my greatest regret,  is waiting too long to start meds.  Why let this virus damage your immune system and your health any more than necessary?

Of course it's your health and your decision,  and you don't need to justify it to anyone but yourself.  But it seems to me that this is a decision better discussed with your therapist than your ID doctor.  Sounds to me like you're having a tough time coming to terms with being poz.  And that's perfectly understandable.

Best of luck,  whatever you decide.




"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline newt

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Re: having thoughts of stopping meds
« Reply #29 on: May 09, 2011, 04:27:17 pm »
Quote
You are in a unique situation and if that offers you an option, of stopping meds, without threatening your health, then that is an option that should be seriously considered. What others do, or experience, is only illustrative, as they are not you.

to the OP I say this is very true. It's your HIV, up to you what you do, especially given the facts of the situation.

Personally, now, having read everything I have on the effects of HIV on the body I would start treatment as soon as, immediately even, sod the guidelines. This is to do with reducing the long term damage of uncontrolled HIV, on your heart etc. There are no definitive data to say it's  better/worse to start with a high CD4 count rather than around 350-500, or to start with  high count and stop for a bit. But this is my guess.  This is a position held in the abstract with the benefit of hindsight at a time when HIV is not an emotional issue for me. I am not sure I could/would say the same soon after diagnosis.

When I was making the decision to start, I hung on to the (then) guideline compliant first CD4 result around 200 before doing so. It took 2-3 years. I was well glad I started cos I felt almost instantly better. But before I took the meds I was scared, and didn't want to. This was a decision in my life.  Starting treatment was an event. If guidelines had been different, I would have done different I guess. Maybe I would have ignored em. Dunno, hard to say now. But I am pretty sure I wouldn't have done too much differently at the time.

Throughout my treatment-taking I have viewed the pills with awe, thanks, relief, annoyance, forgetfullness (yes even me), curiosity, as a toothbrush type routine, as a badge of honour and a few other things. In each case it has always been more about how I felt about HIV and therefore me, and other, bigger/more immediate things connected to HIV, or elsewhere in my life than the pills. I am okay with them now, they are dull and routine, but when I started treatment it was a big deal. 

- matt


Edited for spelling and missing 'much'
« Last Edit: May 09, 2011, 04:32:41 pm by newt »
"The object is to be a well patient, not a good patient"

Offline David_CA

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Re: having thoughts of stopping meds
« Reply #30 on: May 09, 2011, 04:40:00 pm »


When I was making the decision to start, I hung on to the (then) guideline compliant first CD4 result around 200 before doing so. It took 2-3 years. I was well glad I started cos I felt almost instantly better. But before I took the meds I was scared, and didn't want to. This was a decision in my life.  Starting treatment was an event. If guidelines had been different, I would have done different I guess. Maybe I would have ignored em. Dunno, hard to say now. But I am pretty sure I wouldn't have done too much differently at the time.

Throughout my treatment-taking I have viewed the pills with awe, thanks, relief, annoyance, forgetfullness (yes even me), curiosity, as a toothbrush type routine, as a badge of honour and a few other things. In each case it has always been more about how I felt about HIV and therefore me, and other, bigger/more immediate things connected to HIV, or elsewhere in my life than the pills. I am okay with them now, they are dull and routine, but when I started treatment it was a big deal. 

- matt

It's funny how different our experiences were.  I actually wanted to start meds, as I generally felt like crap and didn't want to be out of control in terms of what HIV was doing to me.  Taking ARV's was what I could do to fight back against HIV. 

It was such a non-event to me when I actually started.  I was so sick in the hospital that pretty much anything that was suggested to make me better would have been OK with me.  There was no real decision to be made; start meds and live, or don't start 'em and die.  I felt like crap, but I wasn't ready to give up and die quite yet.  For me, in a way, meds bring a sense of security... kind of like my retirement account at work.  It's a pain that I'm forced to contribute to it every month, but doing so will help provide for me later. 
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
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Offline buginme2

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Re: having thoughts of stopping meds
« Reply #31 on: May 09, 2011, 04:51:14 pm »
Wow what a response.  I offer no advice.  However, if I am reading you correctly it sounds like you are just sick of having HIV, sick of being reminded every time u take meds that you have HIV, and just plain sick of it all.  Thats a very valid feeling.  I am sure every person here can relate.  Instead of trying to forget aboit HIV for awhile by not taking your meds (and therefore not being reminded of it), is there another way to get passed the feelings about being sick of it?  I know your seeing a therapist, thats great, I just hope you can get passed this without having to stop meds and possibly hurting your health.  Good luck! Keep us posted.
Don't be fancy, just get dancey

Offline Assurbanipal

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Re: having thoughts of stopping meds
« Reply #32 on: May 09, 2011, 06:02:31 pm »
It seems there are a couple of issues here:

First, is it actually going to be better for your health if you stop?  Many/maybe even most, doctors nowadays would argue not -- for all the reasons Newt described.  But, as long as you monitor your labs and start back up on a timely basis the difference in your physical health will likely be marginal.  So why focus on that aspect?

Second, and perhaps more important, in your posting histoy you've indicated concern, worry and difficulty in adjusting to having picked up HIV.  Frankly, is not taking a daily pill going to help with that?  You will still be infected, and once you are sensitized to HIV, lots of things are going to remind you of it, every day.  Whether or not you take a daily pill, you will still need to deal with disclosing to potential partners, and, since you are pretty new to this you will probably worry about other (improbable ) means of transmission, not to mention wondering if every sneeze is "it" 

In other words, stopping the pills is not going to make HIV go away as an issue for you to think about and deal with.  Instead, the best way to deal with the concerns and worries is talking about them -- in therapy or through other venues. 

Finally there is the issue of infectiousness.  Yes, you are going to use condoms.  But isn't it reassuring to know that even if one breaks or something goes wrong, that you are as close to noninfectious as you could make it?  And to be clear, this is not mainly about the chance that something will go wrong -- it is mainly about feeling you have done everything in your power to protect a partner. 

Best to you
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%
2014 VL UD - 48
2015 VL 130 Moved to Triumeq

Offline Hellraiser

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Re: having thoughts of stopping meds
« Reply #33 on: May 09, 2011, 06:35:30 pm »
I wish people would lay off the drop-and-die stuff. PozJeepGuy has a reasonable concern to my mind that he started meds straight after diagnosis more or less and was/is it necessary at this point? His CD4 count was well over 500 when he started, and guidelines-wise, this is a 50/50 call in the States and a no-treatment-yet call in Europe (at the moment).

- matt


Matt makes quite a good point here.  The chances of someone progressin rapidly and dying as a result of AIDS are probably lower than the chances of someone being a LTNP.  The nature of the disease is a long term chipping away at your immune system.  Slowly but surely it makes progress in weakening your immune system until other pathogens which are normally easily swatted off become bothersome and bog it down.  The point of HAART is to stop the weakening process, it can reverse it to some degree but take it from those of us in the lower numbers:  this is not where you want to be.  The others are trying to reasonable but let me be the voice of abject fear.  Don't stop your meds.

Offline AlanBama

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Re: having thoughts of stopping meds
« Reply #34 on: May 09, 2011, 06:41:48 pm »
This is a decision many struggle with, even some LTSers (see LTS forum for a similar discussion, someone wants to stop taking his meds).

It has always been very cut and dried for me, and quite clear:  meds = life.   no meds = death.   Is that overly simplistic?  Maybe.   My own personal life experience says that it is not.   I was dying before the protease drugs came out...was SO happy to get them, and imagine how ecstatic I was when they actually began to work !  Nothing, including the dreaded AZT monotherapy, had helped much until this point.  So this issue of hating my pills is just not something that I have ever wrestled with.  I used to have a little prayer of gratitude taped to my daily pill box.

Do I dislike taking my meds?  Some days, hell yes.   I hate filling my weekly pill box every Sunday night too, that takes about 20-30 minutes for me, but saves me much time in the long run.   I do think that eventually you will move past the point of equating taking pills with having HIV.   I have taken handfulls for years now, and I don't give it much more than a brief thought.   What I'm trying to say, is that I do believe it will get better for you, if you stick it out.

Wishing you the best, in whatever decisions you make.

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline eric48

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Re: having thoughts of stopping meds
« Reply #35 on: May 09, 2011, 06:48:30 pm »
I understand where you coming from, but these thoughts, are not healthy thoughts. I repeat once again, without medication, your viral load will go up, your t-cell and percentage will go down, and those very solid and good numbers you have, won't be there.

Just my thoughts...


Hang in there----Ray

Ray's support has helped me a lot in many ways, especially with guilt, sense of being 'rotten', which with time I kind of put behind me.

I do not see any viable reason to go off meds unless you have a medical /financial condition that would lead to that. (please bear in mind that some people go on meds (truvada) even if they are neg...). Age also is a part of the equation

To alleviate the negative feeling that you may feel when taking meds, lets me suggest a few tricks that have worked for me:

- 1 - I prepare my pills boxes once every 8 weeks ( I have 8 pills boxes, obviously and they are $2 each)
(I see the name/box of medication only once every 2 month. In other words, once in my pill box, the meds are 'annonimized'
- 2 - I found some multivitamin that really look alike my own combo (same size, similar color, a few $/pack) and I take them occasionally (usually at lunch time)
- 3 - (I did this for a while, but I do not anymore): I would have the alarm ring at 5 AM, swallow my pills in a semi comatose state, then get back to my normal sleep/life

One other thing lets me feel better about the meds. It is a bit controversial, but here it is:

- a functional cure is not a taboo anymore
- when a functional cure becomes available, it will most likely not be for everyone to start with (there will be failures), and those who have a very very small amount of residual HIV in their body will most likely be the best candidates
- while it may take only a few weeks/months to become UD, (<40 or whatever), becoming super-UD (<1 copy/mil.) is currently achieved by a fair number of people (not every one...), and correlates with the numbers of YEARS of successfull HAART.

When the first functional cure will be offered, and it will, at some point, those who have a good number of YEARS of successfull HAART behind them, will have more chance to succeed.

Of course, the above is a bit Sci-Fi, but it may help you put things in perspective

Hope this helps

Eric
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline denb45

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Re: having thoughts of stopping meds
« Reply #36 on: May 09, 2011, 06:48:53 pm »
I'm in agreement with everyone here, you've only been poz for less than maybe 2 yrs. and you haven't been on your meds that long, what is your reasoning behind THIS, I still don't see a valid one, try taking them for 23 yrs. like I have, do they cause your body to change, Hell yeah they do, but, dying aint fun, and living is always a much better option, I've seen 1st hand what happens without HIV-MEDS, trust me honey, it aint pretty, you really DON'T wanna go there......
« Last Edit: May 09, 2011, 06:52:09 pm by denb45 »
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Offline bocker3

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Re: having thoughts of stopping meds
« Reply #37 on: May 09, 2011, 07:07:40 pm »
As I read this thread, what kept coming to mind, as it has to others who've commented, is what truly is behind your thoughts.  I take your combo -- but with sustiva thrown in (boosted Reyataz and Atripla).  Other than the Sustiva dreams and on and off elevated bilirubin results, I've not suffered any side effects.  Here is the clincher for me though -- when I started on meds (3 months after diagnosis and a little over 4 years after my last NEGATIVE HIV test) I decided to look at it differently then you seem to be right now.  I did not, and do not, look at my pills as a reminder that I have HIV -- I look at them as a reminder that I am FIGHTING HIV.  I have gone from 288 CD4 cells to, generally in the 700's.  I feel as healthy and energetic as ever -- the HIV was sapping my energy way before I knew I had it.  The pills give the control back to me and away from the virus.  I really didn't have to think about it, my count was dropping fast and I didn't want it go lower, however, I think I would have opted to start even at a count like yours.

Of course, this is a very personal decision.  You must work it out and decide what is right for you.  Just make sure you really know what is driving your thoughts in this area.

Hugs,
Mike

Offline PozJeepGuy

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Re: having thoughts of stopping meds
« Reply #38 on: May 09, 2011, 09:11:18 pm »
honestly there is a small part that wants to quit just to have a escape mentally.  Yes I will admit that.  The main reason is ever since I started these things (Ritonavir 100mg, atazanavir 300mg, Truvada and the steady part some kind of boosting agent) I haven't physically felt the same.  Yes I know I wouldn't but not to the point I do. I mentally feel fogging and it just seems to be intensifying over the last two months.  I am having problems just remembering day to day stuff and having a hard time being able to focus.  This is not depression related.  The nausea just sucks.  Its not enough to shut me down but just enough to make each day a little more.... blah.  My tesosterone levels have just crashed.  They did alot of test at baseline of the study and that was one of them; 9 months ago my level was five hundred something and now its at two hundred something.  My energy level is ridiculous.  I have to come home from work and go to sleep.  Now recently started androgel to help with the testosterone levels and I will admit I don't feel like I'm going to calasp but still tired as hell. 

None of this started till the meds began.  I never had to go on meds.  Yes I jump on the bandwagon thinking its best to start off and fight from the beginning.  Now after dealing with all this I am truly wondering how much of this is the meds.  I know I haven't been positive more than a year and I am blessed we found it right out of the gate.  Just goes to show that getting tested on a regular basis is a great thing.  I want a reference point for my body; I feel this  way on meds and I want to know how will I feel off meds. 

Of course I will always discuss this with my doctor.  I am aware of the seriousness of this decision.  I really never knew there were positive people going for years and years and didn't have to take meds.  I didn't know that was ever a option. I'm asking you guys because knowing things from a medical view point is one thing.  Living it is another...
Jake

Offline PozJeepGuy

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Re: having thoughts of stopping meds
« Reply #39 on: May 09, 2011, 11:21:20 pm »
I would like to also say I'm just trying to get all the facts from all sides.  The longer I'm on this journey I am learning to ask questions so I can make a informed decision  unlike the one I made when starting meds.  I do know that there will come a time I will have to and I do mean have to go on meds.  I know many of you have had this debate and it may upset some of you and for that I apologize.  This is the only place I feel like I will get real answers.  I am blessed to have a lot of support but I have no one to relate to or talk to about this who is effect like you guys on here.  Its not taken for granted.  Thank you
Jake

Offline Maelrod

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  • Posts: 60
Re: having thoughts of stopping meds
« Reply #40 on: May 09, 2011, 11:36:07 pm »
I feel blessed no cuz I'm poz, blessed cuz same like you I have access to medication.  Are thousands and thousands of people who are close day by day to die just because they don't have access to get  medication and YOU are one of those who have the magic pills just don't wanna take cuz make you remember a poz status.
Is better STOp living in the past, the I SHOULDn't doesn't exist.

Offline tednlou2

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  • Posts: 5,730
Re: having thoughts of stopping meds
« Reply #41 on: May 09, 2011, 11:45:44 pm »
I feel blessed no cuz I'm poz, blessed cuz same like you I have access to medication.  Are thousands and thousands of people who are close day by day to die just because they don't have access to get  medication and YOU are one of those who have the magic pills just don't wanna take cuz make you remember a poz status.


I understand your point of view.  But, he did mention other issues besides just the meds being a reminder.  And, I totally understand the point of view that we in richer countries have the luxury to debate or make these kinds of decisions.  But, that is like throwing away food.  Many die from lack of food, but we all waste food.  Jeep can't make decisions based on feeling bad that others don't have that luxury.  But, I do appreciate the sentiment behind that way of thinking. 


Jeep, you should follow your gut and brain.  You had good numbers when you started.  If it would be very unlikely to develop resistance, then you should do what you feel is best for you.  I don't understand all the studies on the issue.  Were most who didn't do as well after restarting mainly people who started with a low nadir CD4 and had been poz for years, and usually not people in your situation?

Offline metekrop

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  • Posts: 428
  • Is time running fast for you.
Re: having thoughts of stopping meds
« Reply #42 on: May 10, 2011, 07:51:44 am »
For the last month i have started to think about stopping my meds for a few reasons.  When I first got the news and after very little research I made my mind up fast to start meds.  Now after meeting more positive people, learning more, and over all experience I'm doubting my decision.  I always thought diagnose=meds.  I now hear people who have been positive for years no decades saying they never even started meds yet.  Not to mention the fact that everytime I open those damn bottles its just that reminder, but then I worry somewhat on a few levels on quitting.  One being the whole resistant thing, another being the fear of catching something and just getting sick. 

I read someones post when I asked about starting meds and I can remember it clear as day.  "once you start its taking that pill for the rest of your life."  Now looking back I really wish I would have taken that more into consideration.  I see new people coming to the forums and asking about meds.... As someone just starting this process, stop and do some real soul searching on this one.  Its not as easy as it may appear. 

I am currently on a drug study which ends in 6 month es.  So I know I won't do anything till then, but I'm wondering if anyone was on meds then quit and how are things going.  I know each experience is different but I want to hear what you all think. 

yes and I know to discuss this with the doctor.  I didn't listen before but ears and eyes are open to your thoughts

My advise to you is to continue taking the meds irrespective of anything.  Because, study shows that you have high probability that you will be HIV negative if you stay with the meds for a while with this level of high CD numbers. I want you also discuss this specific situation to your doctor as this might be a case in study in your journy with the HIV treatment.
Diag.on 12/8, 2000, CD 440 VL 44K, No Meds
12/08 - 2/09 CD< 50 & VL >500k hosp'z.
St. Atripla - 7/09 CD 179, VL 197k
10/09 CD 300 VL U
3/10 468 U
8/10 460 U
12/10 492 U
3/11 636 U
8/11 530 U
1/12  616 U
7/12 640 U
12/12 669 U
5/13 711 U
11/13 663 U
4/14  797 U
10/14 810 U
4/15 671 U
10/15 694 U
3/16 768 U
8/16 459 U
2/22 780 U
8/31 940 U
2/26 809 U
8/18 882 U
3/28 718 U
8/15 778 U
2/25 920 70
8/11 793 U
2/22 690 U
6/8 834 U

Offline mecch

  • Member
  • Posts: 13,455
  • red pill? or blue pill?
Re: having thoughts of stopping meds
« Reply #43 on: May 10, 2011, 08:09:15 am »
Because, study shows that you have high probability that you will be HIV negative if you stay with the meds for a while with this level of high CD numbers.

I think you have misunderstood something you read, Metekrop.  Nobody is becoming HIV- on HAART.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline metekrop

  • Member
  • Posts: 428
  • Is time running fast for you.
Re: having thoughts of stopping meds
« Reply #44 on: May 10, 2011, 08:30:07 am »
mecch, you mean I missunderstood the discussion in the following thread.  I don't think so.

http://forums.poz.com/index.php?topic=36867.msg458988#msg458988

Diag.on 12/8, 2000, CD 440 VL 44K, No Meds
12/08 - 2/09 CD< 50 & VL >500k hosp'z.
St. Atripla - 7/09 CD 179, VL 197k
10/09 CD 300 VL U
3/10 468 U
8/10 460 U
12/10 492 U
3/11 636 U
8/11 530 U
1/12  616 U
7/12 640 U
12/12 669 U
5/13 711 U
11/13 663 U
4/14  797 U
10/14 810 U
4/15 671 U
10/15 694 U
3/16 768 U
8/16 459 U
2/22 780 U
8/31 940 U
2/26 809 U
8/18 882 U
3/28 718 U
8/15 778 U
2/25 920 70
8/11 793 U
2/22 690 U
6/8 834 U

Offline Matt39

  • Member
  • Posts: 179
Re: having thoughts of stopping meds
« Reply #45 on: May 10, 2011, 09:31:53 am »
study shows that you have high probability that you will be HIV negative if you stay with the meds

Yes you have misunderstood both this thread and the one you link to in your answer to mecch. And you misunderstand HAART. Having a high CD4 count and percentage can go along with having a very healthy day to day life and experience that is *equivalent* to being negative.
But that is *not* at all, in any shape or form, the same as being negative, and HAART does not, and never has promised that it will somehow backwards convert someone to being 'negative'.
It is unfair to suggest that kind of wishful thinking.

Offline Hellraiser

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  • Semi-misanthropic
Re: having thoughts of stopping meds
« Reply #46 on: May 10, 2011, 10:37:37 am »
Yes you have misunderstood both this thread and the one you link to in your answer to mecch. And you misunderstand HAART. Having a high CD4 count and percentage can go along with having a very healthy day to day life and experience that is *equivalent* to being negative.
But that is *not* at all, in any shape or form, the same as being negative, and HAART does not, and never has promised that it will somehow backwards convert someone to being 'negative'.
It is unfair to suggest that kind of wishful thinking.

No backwards conversion no, but multiple doctors have said if there ever is a cure, it potentially may only work for the people who never allowed the virus to take a long term deeply rooted hold on their systems.

Offline Matt39

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Re: having thoughts of stopping meds
« Reply #47 on: May 10, 2011, 10:47:04 am »
No backwards conversion no, but multiple doctors have said if there ever is a cure, it potentially may only work for the people who never allowed the virus to take a long term deeply rooted hold on their systems.

Well, you will just have to explain to me what exactly that means, and unless they (or you) know what the precise scientific nature of any cure is, it is simply meaningless.

Offline Hellraiser

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  • Posts: 4,155
  • Semi-misanthropic
Re: having thoughts of stopping meds
« Reply #48 on: May 10, 2011, 10:52:20 am »
Well, you will just have to explain to me what exactly that means, and unless they (or you) know what the precise scientific nature of any cure is, it is simply meaningless.

I'm not about to waste hours of my time to find the article in which a couple of notable HIV doctors said that early treatment was most likely the key to curing the illness later on.  If you want to find it, go look.  Someone else who read it (because it was posted on these forums) might link to it for you, but I just don't care enough to go find it for you.  If Jake asks I'll put some time into it.

Offline Matt39

  • Member
  • Posts: 179
Re: having thoughts of stopping meds
« Reply #49 on: May 10, 2011, 10:57:03 am »
I'm not about to waste hours of my time to find the article in which a couple of notable HIV doctors said that early treatment was most likely the key to curing the illness later on.  If you want to find it, go look.  Someone else who read it (because it was posted on these forums) might link to it for you, but I just don't care enough to go find it for you.  If Jake asks I'll put some time into it.

Then it might not be so wise to post comment, quoting me, with something that is meaningless. If you can't back it up then save your fingers.

 


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