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Author Topic: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE  (Read 3739 times)

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Offline the4realone

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  • Posts: 16
I tested poz on January 1, 2013 .... Yesterday Doctors prescribed Tivicay & Epzicom (1 Pill Each A Day) .... They also ordered lab work so they could have a most recent baseline to know where I am upon starting meds and scheduled for me to return in 6 weeks ....

I did not take first dose as of yet ... I really want to wait til I get latest lab results this week ---- I get it that at some point it will be inevitable that I began ART/ARVs .... Except for a MIRACLE ... lol BUT I just wasn't expecting to have to start this soon ---

I do have some other health concerns Chronic Kidney Disease as well as I started clotting while in hospital back in January and was diagnosed with DVT in left leg and PE in left lung on top of I have High Blood Pressure ... of course they are not sure and they are guessing at this point but their plan is get the HIV under control first to rule out it being the cause of the clots before they take me off Warfarin (Blood Thinners) and to see if maybe the HIV is why Kidneys are not functioning the best hence reason why my pressure is so high .... However my pressure has been High and untreated for over 15 years .... But I know I am not the DOCTOR .... I am just sharing because I am struggling to conclude on a start date to take these ART/ARV meds on top of me already taking 8 pills every morning and 5 pills in the evening ... thanks for allowing me to share

I know I will start just struggling with when and what day and WHY THIS EARLY after diagnoses with my Cd4 where it is and viral load at least coming down on its own thus far .... OK I am ready for yawl experienced ones to Pull Me Up NOW .... LOL  ;D

Cd4 773/Viral Load 70,000 - Jun
Cd4 980/Viral Load 150,000 - Mar 8
Cd4 1050/Viral Load 300,000 - Feb 8
Cd4 473/Viral Load 218,000 - Jan 1

Offline wolfter

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  • Posts: 4,036
you already take 13 pills a day for other conditions and you're stressing about taking another one that will save your life?

Seriously though, I always come across as judgmental when I read posts like these but have come to realize that it's a legit concern for many.  Perhaps it stems from having AIDS when there was absolutely nothing available and watching too many loved ones die agonizing deaths.

To quasi quote another member here; These meds are your friends.
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline jkinatl2

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  • Doo. Dah. Dipp-ity.
So I have to ask.. did you struggle like this with the other medications you take? If not, what makes these different?
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline the4realone

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  • Posts: 16
Jkinatl2 ... to be honest I have such an issue with taking meds at all ... and actually just started on everything in January ... I have been consistent with taking everything .... and once I start these I will do the same ... Just struggling with what day to start and again why they push to start with me having CD4 of 773 at this point ... that's all .... It is a hurdle I am just gonna have to get over for sure was just sharing to see if someone more experienced could understand where I am

Thank You for the question and response ;-)

wolfter .... Thank you as well and YES 13 already and struggling/stressing about taking 2 more to be exact LOL .... and they all are certainly to prolong my life ----- I got U on the quote "These meds are your friends." --- I am gonna start building from where I am on that ... looking at it from a more positive perspective and seeing the pros more rather than the cons .... BUT I still wish I could wait a bit long til me CD$ count dropped more BUT I am sure that will not be the case EXCEPT as I said for a MIRACLE ...

Offline leatherman

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  • Posts: 5,920
  • Google and HIV meds are Your Friends
I was diagnosed HIV+ on Dec 26, 1992 - ack! what a christmas present that was. By my birthday in March, I knew it was AIDS and I was taking AZT monotherapy - ack! what a birthday present that was. But that was nothing like the birthday presents I got when I turned 36 and 38 and was hospitalized with PCP and told I was dying. (wonder where the return department is for presents like these?!?!? LOL)

But now, it's been 28 years (that's 55% of my entire life) being poz and 20+ years on meds. Hopefully my birthday present this next year (though it just might be a Christmas present if everything goes well) will be accepting the position of Executive Director of the SC HIV Task Force when it becomes it's own non-profit entity. ;D

There weren't any meds for my first partner to take, and my second partner wasn't diagnosed in time for any meds to work - and that's why neither of them is alive today. However HIV meds got me out of my times in the hospital and recovered my health to a great extent. (last trip to the hospital was over 15 yrs ago) The meds I take with my dinner every night are what has kept me alive all these years to be where I am today. I can't imagine ever looking at taking the meds as something negative, a problem, or a burden. Each of those pills looks like LIFE to me!

Always remember this caveat:
Google and HIV meds are your friends  ;)


BUT I still wish I could wait a bit long til me CD$ count dropped more
turn the situation around and look at it differently. why would you ever want to let HIV continue to destroy your immune system any more that whatever it's already doing? The minute you were infected, this tiny little bug began it's work on eating up your tcells to make more copies of itself. why would you ever want to let any disease continue to sicken you before you decided to treat it? especially a disease that will easily, if untreated, sicken you an unbelievable amount and bring about your death within a decade more than likely. No one who is HIV+ (well maybe a very few rare cases) gets to go all their lives without meds. It's just inevitable - so why fight it? Doesn't it make much more sense to treat your health issues (all of them including HIV) so you can live a long, healthy, productive, and happy life?  (That's certainly the choice I made - and that was back when the meds just guarantee a longer life, not necessarily a longer, healthier, happier life. LOL)




by the way, ;) I can't wait to see your post (we see them ALL the time here LOL) in a couple weeks/months when you come back to tell us you don't understand why you were ever concerned about going onto meds.  :D Best Wishes!!
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 the4realone

  • Member
  • Posts: 16
Thank you soooo much leatherman for sharing so thoroughly with me --- as I was reading your reply the coordinator of support groups at the clinic I go to in Baltimore she actually call me when I was almost done to check up on me and to see if I had started ... Wowww I am here in Baltimore living at a Mens Transitional House ... I think I am gonna go spend weekend with some close friends in another city ---- so that I am around people I trust that care about me and will at least come check on me in the first few days should I actually start tonight ---- I ended up in this situation of living arrangement because my car broke down and I could no longer get back and forth to the clinic I had began attending which was about 30 minutes from where my friends stay .... I still have my room there though ...

again thanks --- really this is helping me to proceed forward towards what I know at some point I must for my health and life

Offline oksikoko

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  • Writing the congressman again
    • the treatment cascade
Just struggling with what day to start and again why they push to start with me having CD4 of 773 at this point ... that's all ....

Hey, buddy. Yeah, whether we like it or not, HIV is still a "special" disease because it's potentially fatal, contagious and has a sordid history, so it's normal to have special feelings about it and about its treatment that you may not have for other diseases/condition.

But think about it this way: did the doctor wait until your other conditions were more dire before starting treatment or did he treat as soon as they were discovered in order to avoid later complications, to keep you from getting worse? This is the thinking behind starting ART early, and it's becoming standard in some countries (like the US) to treat early and treat hard.

I also like to remind people that being on treatment means they're less contagious, so in addition to all the personal benefits, there's also a public health benefit to each of us managing the virus well.
Code: [Select]
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

Offline the4realone

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  • Posts: 16
But think about it this way: did the doctor wait until your other conditions were more dire before starting treatment or did he treat as soon as they were discovered in order to avoid later complications, to keep you from getting worse? This is the thinking behind starting ART early, and it's becoming standard in some countries (like the US) to treat early and treat hard.


Thank you oksikoko definitely makes sense ... much appreciated

Offline drewm

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  • Posts: 1,006
  • Mmmmmm Hmmmmmm!
Simply put HAART can save your life. Literally. The thing to remember is that HIV/AIDS is deadly BUT can be controlled with medicine. My advice...listen to your docs and do what they say.
MAY 2010
VL>500,000 CD4>8

JUNE 2010 STARTED ATRIPLA

DEC 2010
VL>30 CD4>323

Atripla. Valtrex, Trilipix, Fluoxotine

Offline mecch

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  • Posts: 10,732
  • red pill? or blue pill?
You have some pills in a bottle that are going to stop a viral replication right away. This viral infection is probably contributing to your many health challenges.  Your body is ferociously fighting and fighting and fighting.  Inflammation.  Gastro issues.  Damage all around. 

What exactly is it - about the antiviral pills?  You think they are poison? Harsh? Nope. 
(And I don't like the expression "hit early hit hard". The pills are not "hard".  I felt GREAT relief in my body soon after staring my pills.  I would call that "soft" actually. HIV IS HARD.  ITS DEADLY. The medicine is very precise these days. Its designed to fight THIS virus.  This isn't medieval bloodletting. This isn't some kind of systemic caustic treatment...  We are NOT "nuking" our bodies with these pills.  IMO.)

You think they don't work?  Might not work?  THEY WILL.  Your system can go to work on the other issues.

Can I ask a question? What do you think? Is it really the pills? Or are they a symbol - accepting you have HIV forever...?   Well, you got it, my dear.  Now fight it.   Don't project your ambivalence about being HIV+ onto the treatment of the disease. The pills are a fantastic tool for us HIV+ people. 

Where did you get this idea "I could have gone longer without treatment?" "Maybe I can still go longer without treatment?"

First of all, those projections are OLD fcking news...  Secondly they are based on populations.  You are an individual and your doc thinks your situation is - start now.... 

Sure, maybe you can go longer.... But why - it sounds, I dunno, a bit self-destructive as an impulse.  "I can let HIV destroy my body a little bit longer, maybe..."  What's the point of that?
« Last Edit: August 30, 2013, 04:31:21 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline JungleJungle

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  • Posts: 41
Leatherman & Mecch everytime i read about your posts they really sound like a great motivational to me... Positive thoughts are what made us changing perspective in life, thank you!
You need coolin', baby, I'm not foolin',
I'm gonna send you back to schoolin',
Way down inside honey, you need it,
I'm gonna give you my love,
I'm gonna give you my love.

Offline Newguy

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  • Posts: 127
Hola

First off, I too was petrified and I feel great now. You most likely will too. Secondly IT IS NOT FOR THE REST OF YOUR LIFE. Nothing is!

Best

Offline aaware72

  • Member
  • Posts: 197
I look back now when I first found out I was positive in January.  My VR was 53K and my CD4 was 230.  I was so tired all the time.  I look at pictures of myself last fall and going into winter and I look tired, sick if you will.  I guess I really was sick and I did not even know it.  My doctor explained it to me like this.  If I went untreated my body was going to be working in overdrive to try and battle the virus.  This is what was making me fell so tired and look worn down, well because I was worn down and sick.  Today I fell and look so much better.  I fell very luck to have found out and started medication when I did.  Six months later I'm UD and my CD4 is on the rise.  Currently 420.  I take Stirbild and so far so good. 
"Yes, knowledge is power. Self-knowledge brings mastery of one's body."

Offline oksikoko

  • Member
  • Posts: 672
  • Writing the congressman again
    • the treatment cascade
(And I don't like the expression "hit early hit hard". The pills are not "hard". 

'Hitting hard' refers not to hitting you hard but to hitting HIV hard at multiple points in its 'life' cycle, in my case twice at transcription and once at integration. And my pills work damn hard.
Code: [Select]
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

Offline Grasshopper

  • Member
  • Posts: 442
It's not as if you're in perfect health; you've got a shit load of other ailments to deal with.....believe me you don't want to be adding hiv complications to that list. Take those pills, and keep your hiv as a diagnosis instead of an active disease.

Offline newt

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  • Posts: 3,868
  • the one and original newt
hmmm

It is true the meds save your life in due course, but your CD4 count is in normal range (500+), which means as far as HIV goes you have time to think, much time probably. Certainly until your CD4 count falls to 500. A CD4 count under 500 indicates the virus is damaging your immune system.

Some time to get your head round your HIV diagnosis will probably not hurt.

This is not to say treatment for HIV now is a bad idea, or that it won't preserve your kidney function (which is might well do).

- matt
« Last Edit: August 31, 2013, 08:58:20 PM by newt »
"The object is to be a well patient, not a good patient"

Offline newt

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  • the one and original newt
PS - in answer to your question WHY THIS EARLY? it is because the suggestion you start meds is in line with guidelines, that's all, it's nothing to do with you. - matt
"The object is to be a well patient, not a good patient"

Offline the4realone

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  • Posts: 16
Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #17 on: September 01, 2013, 10:22:31 AM »
MATT aka NEWT I thank you so much for sharing that with me ... that has been my thought when and if my cd4 drops to or below 500 then I will without question ... I do not have to wait til it drops to 350 .... but as long as my viral load continues to drop and my CD4 holds on above 500 I do not want to rush it and not because taking them is a bad thing

To everyone who has responded to this post thus far ... I appreciate all of you for sharing as well ... I need both perspectives and thoughts behind them ... I will say this I realize My Blood Pressure has been high and untreated for years .... that I should not have ignored 15 years ago but I did ... and it I believe is what has cause me to have some damage to my kidneys ... for the first time I am dealing with that ... I was 375lbs and went down to 225lbs then started gaining in February and now I am 296lbs ... I am working to lose 101lbs over the next 4-6 months .... It is my hope that I can at least accomplish that before I began taking meds ART .... I pray my body can hold up and hold on at least 4-5 more months reducing viral load and maintaining CD4 count above 500

Offline mecch

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  • Posts: 10,732
  • red pill? or blue pill?
Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #18 on: September 01, 2013, 10:39:34 AM »
I dunno. Since there is good Science behind waiting, and also lots of expert opinion about starting now, I think it is odd that you say you will "pray" that you don't need to start for such and such a time... 

It seems very important for you not to start but I don't see you discussing in this thread why it is important for you, to delay.

Also why is a weight loss goal (very ambitious one, at that) being factored into the decision about when to start meds.   Seems like apples and oranges, from a distance. Also what does your doc say about that? 

This is a general observation about what I see in these forums over the years.  The  thinking that "i have this certain very distracting problem, that I have to address, before I can begin to address this other distracting thing." 

One of the ones that has popped out to a few of us, is "I can't possibly consider mental health therapy, until I get my shit together."   
Just maybe see some parallels here but I may be wrong. But its a common experience that for some people living with HIV can be so anxiety making and difficult to think about that it gets swept under the rug or rationalized as "too big" and so there is some avoidance...   Again, not saying that describes you but its something we can all think about, no?

Good luck to you!
« Last Edit: September 01, 2013, 10:42:53 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline buginme2

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  • Certified Life Coach
Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #19 on: September 01, 2013, 12:36:21 PM »
Wait a second, you have

Chronic Kidney Disease
Your blood is clotting
You have/had uncontrolled high blood pressure
Your obese
You have HIV

Everyone on this thread has echoed that yes, you probably should listen to your doctor and begin meds (especially since you have very SERIOUS co factors).  HIV can cause and worsen CKD and Heart disease both of which you have or are very highly at risk for.  There is a reason your doctor has started you on meds.

Don't be stupid. 
« Last Edit: September 01, 2013, 12:40:50 PM by buginme2 »
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

Offline newt

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  • the one and original newt
Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #20 on: September 01, 2013, 04:49:14 PM »
A bunch of health things to deal with at once is daunting.

This is really important: untreated HIV appears to be directly involved in damaging the kidneys. Starting meds for HIV may in fact be a really good thing to do to stop your kidneys getting worse.

To my mind your most pressing problem is the blood pressure, and if you want to go one step at a time, address this first.

But when you come to prioritise the rest, perhaps not best to look at HIV on its own, but look at the virus' effect on your body overall. No-one wants to be on dialysis for want of a few pills to suppress a virus, eh?

The reason docs want to start you on meds straight away is prob because of your poor kidney health (guidelines recommend treatment for all people with poor kidney health becuase it seems protective of further deterioration of kidney function).

The 5-10 years from getting HIV to meds thing is an urban myth. It was never thus really, lots of people got ill immediately or within 1-2 years from HIV.

Good luck

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

Offline moxieinme

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Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #21 on: September 01, 2013, 05:27:49 PM »
Bravo The4realone for seeking advice from people who know the playing field, and bravo to all the respondents who offered sound advice and loving support.

Yes, the meds are your friend. And know that you are very fortunate to have drugs that are far more sophisticated and safe that what many of us have had to slog through. You're a lucky guy to have healthcare providers watching out for you and catching things early, and great state-of-the-art meds available. I can't tell you not to worry, that's up to you, but you've got a lot of tools in your toolbox.
Salvage therapy wrangler, riding the poz bronco and dodging bullets for over 24 years.
- - - - - - - - - - - - - - - - - - - - -
CD4 at diagnosis 1989 = 330
Began treatment (AZT) 1989
Lowest labs 1998: CD4=74, 7%, VL=750,000
First sustained undetectable VL in 20 years (2009); CD4=315
Current labs (12/13): CD4=637, 27%, VL=<20
Current meds: Prezista, Isentress, Intellence, Norvir

Offline the4realone

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  • Posts: 16
Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #22 on: September 02, 2013, 01:26:12 AM »
Let me say this again .... I am sooo grateful to have this forum to even be able to share some of my many thoughts and feelings in this my journey and I am even more grateful for all of YOU and Your Feedback, Insight and Opinions, Really I am ... It is all helping me in ways you all will probably never know or understand ... Again I am not against medicines for HIV or anything else HOWEVER I have never liked taking medicine for any reason ... I actually avoided taking medicine for Hypertension for well over 15 years and when I was originally told I was diabetic and had High Cholesterol, I opted not to take either at the moment and began working on losing weight ... Needless to say the doctors told me a few years ago that I AM No Longer diabetic ... My question is how would I have gotten to that place if I didn't take at least some responsibility and try to do something different ... As for the weight issue My wanting to deal with that is because I had already lost 150 LBS as of last October 2012, prior to my HIV diagnosis January 2013 and maintained it until just this past February 2013 .... it was only due to the Pulmonary Embolism (Clot) that moved to my left lung from my left leg that left me unable to workout until just recently ... It is then that I gained back 71 lbs .... Other than that I would for certain have made my goal to losing 200 lbs Total and would have long been at my desired weight of 175 lbs. ---- But that is not the reason I progress slowly to take the HIV Medications, which I can agree with you all that medicine is not a bad thing and can be and has been Friendly

But can you all deny COMPLETELY that there are LTNP and LTSP? I mean come on??? You all may slice me up for this BUT, How would any of them have known that they were such, if they had began ART right from the beginning??? And can anybody say that it would be a BAD thing if that was the case for us or anyone to be LTNP or LTSP? That may not be the case with me .... but it is with an ex of mine who is undetectable for years and has a strong CD4, who before the new guidelines came into place was diagnosed .... how would he have ever known if the new guidelines had already gone into effect, or if he was forced to start ART right then, months after being diagnosed?

Now as for my DOCTORS --- they have not known me or my health conditions for long .... Hypertension goes way back as I stated ... they have not yet even got all of my previous records .... This chronic Kidney Disease started or happened way before my HIV infection so HIV is not the reason for that or the Hypertension .... I had to ask them if they can ordered my records from my previous doctors in NYC and in WV (a couple years back they removed my Appendix stating I had appendicitis ... which kept me down for months to then I got the pathology report back, via my surgeon, from the Pathologist, that my Appendix was NORMAL) .... My surgeon told me in his office that he was so sorry that I had been through all that I had, for my Appendix to be normal ... LOL ... Would YOU ALL NOT say and agree, that was a MISTAKE on their part? BUT the guidelines said REMOVE it because of the symptoms and NOW I NO LONGER have an APPENDIX any more ... Let me try to get back on track and finished with this post LOL) ... My Doctors told me just Thursday before they gave me the medication prescription when I asked if they could get records from past years that they could and needed to get a consent/release from me and I realized after leaving that they never did and obviously walked out never pushing the issue .... So I take responsibility for my part in that .... BUT still I believe there is something in those records that they need to at least SEE to assist them in their CARE for me .... ARE NOT me and my PROVIDERS suppose to be A TEAM in all of this????

I hope this at least gives you all more details and a little more clarity as to my perspective and reasoning for NOT WANTING TO RUSH IT or progressing cautiously .... I BELIEVE that I am being responsible .... I don't want to start what I am not quite sure yet that I will continue ..... and I have been told in many workshops since, that a person should not start ART until they are ready ... I was also told by a friend that HE did not have that choice, that I have, when he found out and that He would have, and I quote him, "eaten a SHIT sandwich had they told him to, because he was at that place of being AIDS defined when he found out. 

There is more I could say about the clots, but they don't know why that happened, they want to conclude that it has something to do with the HIV BUT I read some info just yesterday in my labs that they never told me, about some levels of a particular test that was extremely high, and could be reason for clotting, and that wasn't caused by the HIV, but buy my eating a lot of protein from animals, and not enough fruits and vegetables, hmmmm, I just refuse to allow everything to be blamed on HIV simply to keep from doing a little more research and exploration .... Finally, in closing, I would take the medicine ... in a heartbeat if I had with 100% CONFIDENCE that they have been thorough ... Let me end this, LOL, I know I have said a lot ... Thank you for allowing me to share

Much PEACE, LOVE & APPRECIATION to all of you, MY BROTHERS & SISTERS ... We are connected for sure.

Offline jkinatl2

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  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #23 on: September 02, 2013, 02:28:32 AM »

But can you all deny COMPLETELY that there are LTNP and LTSP? I mean come on???


Cd4 773/Viral Load 70,000 - Jun
Cd4 980/Viral Load 150,000 - Mar 8
Cd4 1050/Viral Load 300,000 - Feb 8
Cd4 473/Viral Load 218,000 - Jan 1


Do you think you are one of those? Because these labs say you are not.

Hey do what you want. But there's enough research suggesting that preserving your innate immune system is worth it to consider, at least.

Congrats on the commitment to get in shape and address your other health issues. It does seem like many of them may well disappear once you lose the weight and change your diet/lifestyle. I absolutely wish the same could be said for your HIV progression.

Sooner or later you will need to start meds. That seems to be a given. I can tell yo, the later you start, the bigger the chance that your body will have a negative initial response. Whether it's IRIS or side effects, the higher the concentration of HIV in your gut (for example) and the weaker your immune system's response, the more likely that you will have serious and long term issues.

But like many have said, the time to start meds is when you are mentally prepared for the commitment. And you clearly are not, so this really doesn't seem to be a discussion worth having. No one should bully you into taking meds, now or at all actually.

I only hope that you take the time you need to educate yourself about the disease, it's progression, and the meds used to treat it today.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline the4realone

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Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #24 on: September 02, 2013, 03:59:22 AM »
That is exactly what I am doing ... educating myself ... and it is what I will continue to do .... certainly not done overnight or in 9 months .... as for the discussion ready or not to begin ART yet this forum is helping me and giving me a wealth of information to consider ... I am certainly not perfect nor am I always right by far BUT something inside is causing me to not rush and in the past that has certainly not been my M.O. .... thank Ustill jkinatl2 ...Ur words are not falling on deaf ears or being ignored ... In fact None of YAWL words are falling on deaf ears or being ignored
« Last Edit: September 02, 2013, 04:14:37 AM by the4realone »

Offline the4realone

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Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #25 on: September 02, 2013, 04:13:21 AM »
Now I have to learn how to work the quote highlighting command here .... LOL .... always up for learning something
« Last Edit: September 02, 2013, 04:15:33 AM by the4realone »

Offline the4realone

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Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #26 on: September 02, 2013, 10:20:31 AM »
jkinatl2

Quote
"Do you think you are one of those? Because these labs say you are not."[/move]

I almost became upset when U chose in your last post to repost my labs and make the above statement .... but then I did not allow myself to go there and decided rather that maybe U know something that I don't know, that I can learn from you, which caused you to address me the way U did .... So in light of the above statement I needed to ask you if LTNP and LTSP NEVER experienced upon their initial time of infection and sero-conversion a hike in their viral load and/or a dip in their CD4? I know I don't have all the answers because if I did I certainly would not be here have this dialogue and having proactive conversation ... I AM a NEWBIE for sure. INQUISITIVE? Yes. GREEN? Very Much so ... BUT at the same time concerned enough about my Health and grateful it wasn't at the last minute when I I would have had NO CHOICE, A PRIVILEGE, I AM afforded at this particular time ... trust me I am far from arrogant in this, I am actually quite humbled by it ALL & I KNOW it is possible that that time will at some point come to an end BUT that is not the case quite yet ;-) ... either way I wrote a song titled "I'm NOT Going OUT Like This"

Offline wolfter

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Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #27 on: September 02, 2013, 10:31:37 AM »
I hope I'm doing this right and that our dear friend doesn't mind.  If this doesn't sum it all up, then I don't know what will.   ;)

http://forums.poz.com/index.php?topic=50286.0

This is example of why many of us want to scream  "WTF".  These meds are beneficial  and will save your life and as importantly, save your loved one from extreme grief. 
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline leatherman

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Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #28 on: September 02, 2013, 10:46:55 AM »
Needless to say the doctors told me a few years ago that I AM No Longer diabetic ... My question is how would I have gotten to that place if I didn't take at least some responsibility and try to do something different
just for the record, there is absolutely NOTHING - no exercise, no supplement, no vitamin, no drink, no spiritual recitation, no nothing - that fights HIV except for Highly Active Antiretrovial Therapy. And there's pretty much nothing to raise your cd4 count (which is a measure of your immune system) than stopping the HIV and letting your immune system recover. So please don't think there will be something that you can DO that'll make things better.

Again I am not against medicines for HIV or anything else HOWEVER I have never liked taking medicine for any reason .
:o ;D too be blunt, that's the craziest sentence I've seen on the internet today. LOL Paraphrased it says, "I'm not against meds; but I'm against meds". ROFLMAO

I mean just what reason would a doctor unjustly prescribe you medication? Do you not trust doctors?

Do you not trust YOUR doctor? Do you not think that your doctor has treated enough patients to correctly prescribe medications to you - even when the situation doesn't fit the guideline exactly? I often remind people it's called "practicing medicine" for a reason. Just because you don't think you fit the guidelines perfectly, doesn't mean in his practice, your doctor hasn't already seen 300 patients just like you and has learned that now is the time to prescribe medications for you.

Hey, I'm just throwing this all out there as food for thought. As JK wrote, you are clearly in the mindset to NOT start meds, so my advice is to not bother with them yet. If you start these kinds of daily meds with a negative-ish attitude, you'll just stop them when the going gets rough (when a few side effects show up in the adjustment period) or you'll begin to forget them because you don't care (not invested enough in them) and that'll lead to other problems.

and how do we (meaning me, JK and others) know that could be the path you might go down? We read it in the reports all the time, see it all in the time in fellow patients, and have even gone that path ourselves.

We're just telling your our experiences and speaking of experiences, let me point out the LTNP and LTSP are so rare that I have never personally known one. And many of the few that I have met here - well they've gone onto to meds now too for the most part. From what I've seen being positive for almost 3 decades is that everyone goes on meds or they die. I often think that people hoping/wishing/praying that they are LTNP is just as much a pie-in-the-sky dream as thinking/hoping/wishing the cure would be here tomorrow and all this would go away. Hoping to be a LTNP is probably 99.5% of the time just delaying the inevitable.

I just know that if we were still in the old days, I wouldn't encourage anyone to go onto AZT monotherapy. I did though and it was awful. So awful that I stopped taking them and nearly died (a couple of times). That's the kind of decision we used to make about taking meds back then. The choices were few, the odds were slim, and the problems were many. But those horrible pills keep me alive another 9 months until more meds came to the market.

Twenty plus years of meds later, I also know that if I was diagnosed today, I wouldn't hesitate to start today - regardless of my numbers. While I understand we don't know all the long long term effects, etc. I took the gamble with AZT for heaven's sake cause I wanted to live. Atripla, Stribild, Complera, etc are absolutely nothing like AZT, and I wouldn't hesitate to take any of the common regimens or once-a-day pills today to stop HIV in it's tracks. AZT had no success rate; but the odds are extremely high that someone could go on Atripla today, never have a problem and never look back for 50 or 60 more years. I ain't a gambling man but those are lottery-WINNING odds. LOL
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 wolfter

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Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #29 on: September 02, 2013, 10:57:30 AM »
Sorry I'm not quoting, but it's early.  Mikie, you indicate that AZT had no success rate.  Aren't many of here because of that awfulness?  And true, I'd never suggest that drug except maybe to newbies.  Let them take that for a few months to eventually be grateful for the wonderful new world of HAART.  :)
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline leatherman

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Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #30 on: September 02, 2013, 11:30:52 AM »
Mikie, you indicate that AZT had no success rate.  Aren't many of here because of that awfulness?
AZT may have helped; but people still died while taking it. It only slowed HIV. It was not a successful therapy in the sense that it works like any modern day regimens (HAART). It was not the appropriate therapy for treating HIV; although it has proven that it can be a component for successful treatment. AZT alone (which was all many of us had to start with) is a bazillion, zillion, trillion miles away from artipla - or even my current regimen of reyetaz/norvir/truvada. ;)

so AZT alone has absolutely no success rate in keeping HIV positive people alive for decades like modern triple-med regimens.
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: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #31 on: September 02, 2013, 11:40:51 AM »
When AZT was first approved IIRC it was restricted to patients <200 cd4. In hindsight it wasn't going to matter if it was AZT or any modern drug for HIV -- that wasn't going to work. If you put someone with 5 cd4s on monotherapy, regardless of the antiviral, they're going to die. Also, keep in mind that the CDC did not even issue guidelines on the proper, standardized way to treat PCP until two years after AZT was FDA approved. Bad treatment back then wasn't just about AZT, but a whole host of things.

>>> good read by Dr. Joseph Sonnabend on the importance of patient management strategies vs. AZT during that time period: http://blogs.poz.com/joseph/archives/2011/01/_v_behaviorurldefaul.html

Of course your average person didn't understand this at the time so every one labeled AZT a "poison pill". At least when a second antiviral was FDA approved in late 1991 (Videx) some doctors realized using two drugs together might be better than one alone which is what mine did.
« Last Edit: September 02, 2013, 11:55:48 AM by Miss Philicia »
"I’ve slept with enough men to know that I’m not gay"

Offline wolfter

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Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #32 on: September 02, 2013, 11:44:42 AM »
I know we're off topic, but were some of us just lucky to overcome illnesses that were said were fatal?  I've always said AZT kept me alive until something better came along. did our natural systems rebound with help?

I'm in a bit of a hazed this morning, and I like it.

I started that drug while dying of AIDS, so did I give it too much credence? 
« Last Edit: September 02, 2013, 11:46:43 AM by wolfter »
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline mecch

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Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #33 on: September 02, 2013, 12:05:00 PM »
Back to topi?  OK.

the4realone - I think you have a number of health challenges but the one that is almost a no brainer and requires less effort (than obesity, for example) is fighting off HIV. 

I know how to read between the lines, and actually also read the lines themselves. And thats my take from the title of your thread, with the caps THIS EARLY & REST OF MY LIFE, etc etc.

IMO, you have ambivalence about having HIV and you are quite ambivalent about treating it.  None of this is a criticism, we all have our character.  I'm sending you my love, really, and warmly recommending that you read Leathermans post about "what one can do" -

just for the record, there is absolutely NOTHING - no exercise, no supplement, no vitamin, no drink, no spiritual recitation, no nothing - that fights HIV except for Highly Active Antiretrovial Therapy. And there's pretty much nothing to raise your cd4 count (which is a measure of your immune system) than stopping the HIV and letting your immune system recover. So please don't think there will be something that you can DO that'll make things better.

Its a no brainer because the disease is SO well known, the treatment is SO thoroughly researched, and so successful.  Its 2013!!!  When I seroconverted in 2008, My specialist - first meeting, insisted I take to heart his words - WE CAN TREAT THIS VERY SUCCESSFULLY, you will take the medicine when its time and you need to go about your life as normal. He also told me not to overthink the medical side and surely not to apply stuff from the entire history of the epidemic to MY CASE, my situation, my life going forward. In other words, I had to be smart and have critical judgement, learning and reading about HIV, or in fact, just let it go and let the expert deal with it.

I have a job, my life, etc. I don't need to be that much of an expert about my body and how to treat the misc diseases and health challenges I come across over my life.  THere are experts for this.. We all get a fair amount of crap, right?

The challenges of living with HIV are emotional, social, and often times financial, unfortunately.  Dealing with all that is by no means a "no brainer". 

Please please don't let the actual treatment of HIV preoccupy your mind and don't let it weigh you down and overload you..  You are right, you have a BIG power and role in meeting other challenges, like diet, exercise, blood sugar, weight, blood pressure. 

HIV is not like any of those health challenges, in some respects.  HIV+?  ---- docs take blood, docs monitor the disease, docs recommend when to take the treatment, docs deal with any side effects or drug switches.  Its straightforward...

Down the lines, as years go by, docs deal with health challenges that might be associated with being HIV+, or being on medicine, but at this point, a fair amount of what that might be, is speculative.  Again, its 2013. 

Meanwhile, the TREATMENT of the HIV infection itself, its done and dusted.

I assure you, you need to let go a bit, and reset your mind.  You are fretting about a few things here, not worth fretting about... Over which you have no control, if you are dong it correctly.

Over-control and insistence on personal power can sometimes be counterproductive, even if for some people, this seems counterintuitive.

Thats why the long-term survivors posted the moving terribly sad stories, like the one in the link above.

The epidemic is riddled with people who insisted on too much "control" over their HIV infection when there were much better paths to living well.  Getting on the drugs at the right time, sticking to them..  Delays, wasted time and money an effort and hopes on somehow controlling their HIV progression.  Bad path!!! Don't go down it. 

Also, people overwhelmed by the social, emotional, or financial aspects, and that turmoil destroyed the ability to take the matter of fact steps to successful treatment.   

Both paths are tragic and deadly.  Heart-wrenching wastes.
« Last Edit: September 02, 2013, 12:15:43 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline wolfter

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Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #34 on: September 02, 2013, 12:10:02 PM »
Thanks for taking the time for taking time to point out what's relevant as I was afraid we veered off topic.   ;)
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Offline the4realone

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Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #35 on: September 05, 2013, 06:29:43 PM »
Thank U all .... Tonight September 5, 2013 @6:15pm goes down in history as the first night that I took ARV's/ART ... I did wait as I wanted until I got my most recent lab results and made the final decision this morning to begin this evening ... keep me in your prayers it was a major step For ME ... I will keep you all updated on how it goes and is going --- 1 Tivicay and 1 Epzicom daily

Offline oksikoko

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Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #36 on: September 05, 2013, 07:40:04 PM »
Thank U all .... Tonight September 5, 2013 @6:15pm goes down in history as the first night that I took ARV's/ART ... I did wait as I wanted until I got my most recent lab results and made the final decision this morning to begin this evening ... keep me in your prayers it was a major step For ME ... I will keep you all updated on how it goes and is going --- 1 Tivicay and 1 Epzicom daily

And you got Tivicay! So, they're pairing it with Epzicom? I wasn't sure if it would be with Truvada or what. ;) Good luck, and let us know how it goes.
Code: [Select]
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

Offline phildinftlaudy

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Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #37 on: September 05, 2013, 07:43:23 PM »
Thank U all .... Tonight September 5, 2013 @6:15pm goes down in history as the first night that I took ARV's/ART ... I did wait as I wanted until I got my most recent lab results and made the final decision this morning to begin this evening ... keep me in your prayers it was a major step For ME ... I will keep you all updated on how it goes and is going --- 1 Tivicay and 1 Epzicom daily

Congrats -
I know that taking meds and the thought of doing so for the long haul can be difficult to swallow (pardon the pun)....
But, for the time being, taking the meds is what allows us to live with HIV and not die from it....

Glad you took the step and hoping for smooth sailing for you....

-Phil
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline socalpoz

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Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #38 on: September 05, 2013, 07:55:55 PM »
Congrats, on taking the first step! Sending wishes for minimal side effects. Keep us posted! How were your labs btw?
Diagnosed Jan. 22, 2011
feb/11 cd4 547, cd4% 37, vl 527
mar/11 cd4 650, cd4% 37, vl 97
may/11 cd4 698, cd4% 37, vl 303
jul/11 cd4 744, cd4% 39, vl 239
aug/12 cd4 675, cd4% 39, Vl 42
Jun/13 cd4 594, cd4% 38, Vl 1860
Jul/3/13 started Stribild
Aug/13 cd4 758 cd4% 43, vl ??

Offline the4realone

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Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #39 on: September 05, 2013, 08:52:02 PM »
Thank U Phil for the encouraging words


Thank U socalpoz certainly will keep you all informed

Offline the4realone

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Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #40 on: September 05, 2013, 08:57:06 PM »
BTW socalpoz my labs were not as great as I had hope CD4 had dropped to like 533 .... when I got the results in my mychart from the clinic my VL was not included so not sure what that is yet .... but the drop in my CD4 was enough for me

Offline socalpoz

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Re: I Am Struggling to start ART/ARVs ... THIS EARLY & For The REST of MY LIFE
« Reply #41 on: September 05, 2013, 09:54:27 PM »
Regarding your cd4's, although not the news you had hope for, I think you are making the right decision to finally start your meds, and remember we are all here for you!

Now we can all wait anxiously in two months for your new lab results.
Diagnosed Jan. 22, 2011
feb/11 cd4 547, cd4% 37, vl 527
mar/11 cd4 650, cd4% 37, vl 97
may/11 cd4 698, cd4% 37, vl 303
jul/11 cd4 744, cd4% 39, vl 239
aug/12 cd4 675, cd4% 39, Vl 42
Jun/13 cd4 594, cd4% 38, Vl 1860
Jul/3/13 started Stribild
Aug/13 cd4 758 cd4% 43, vl ??

 


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