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Author Topic: 4YRS ON - MY JOURNEY WITH HIV & MEDS (kinda long)  (Read 1222 times)

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Offline BKNYLivin

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  • Posts: 76
4YRS ON - MY JOURNEY WITH HIV & MEDS (kinda long)
« on: September 30, 2010, 04:55:47 PM »
It has been 4 years now, since that awful September in 2006, when I was diagnosed with HIV after a bout of pneumonia. I thought I would post a little long summary of what I have learned in my 4 years living with and fighting this virus. Hopefully, someone out there might find something useful, just as I have received some useful info from this forum, over the years. Remember, these are MY opinions and any suggestions are based on my experiences and those of other HIV positive people I have come in contact with, in the last 4 years. It is quite long, so read it when you have time. I tried to keep it short, but once I started, I couldn't stop. This is actually the shortened version, I'm saving the rest for my memoirs. Apologies for any spelling mistakes - it's just you guys.


THE EARLY DAYS - FOR BETTER FOR WORSE

Even with all the knowledge available today, testing positive for HIV can still seem like a life sentence. People will tell you it gets better, you are not dying, you will have sex, date and find love again, you can lead a fairly normal life (which is true for most), but allow yourself the time to grieve, or experience whatever feelings you need to work through. In my experience, those who work through the anger, pain, guilt, fear and self-esteem issues often come out stronger at the other side(acceptance). In the early days, sometimes I felt like screaming, shouting, crying, slapping the guy(or girl) at the checkout(coz they were too slow) and throwing my cell-phone at the cab driver(Naomi eat your heart out).

I was lucky enough to have therapy and a support group available to me and used these services (as well as this forum) to work through my feelings of rage, despair, guilt, self-pity and self-loathing. For me, it was and still is easier to work through those feelings without mind-altering substances. I was also around other HIV positive men and quite a few of those, who took the "it's no big deal" approach, but chose to go out partying hard instead, have since crashed or look like hell. I am glad I resisted the understandable temptation to bury my feelings in alcohol and/or other drugs. Of course, initially, I drank a bit more wine than usual, so don't beat yourself up if you find yourself indulging a bit more than normal. Just try not to stay in that place too long. Get support wherever you can, but don't try to turn your friends into therapists, or expect them to ALWAYS be there for you, they have their own lives. Your low CD4 count might be the center of your universe, but it could also ruin your buddy's planned night of hot sex. HIV doesn't have to turn us into self-centered biatches - if you can, get a therapist, and/or join a group.

Online forums can be a very useful source of support, especially in the early days. AIDMEDS got me through some dark moments, just reading the experiences of others gave me strength. Like any other resource, I learned to take what was relevant to my own life and adapt it to my needs. Just because an individual has 10,000 posts doesn't mean you have to take EVERYTHING he/she posts as gospel. Do as much research as you can, being proactive is empowering. Like anywhere else, forums consist of great people, jerks, the eternally optimistic, depressingly negative and everything in between.

Some people will piss you off and others will make you laugh. Most have something valid to contribute, if it doesn't help you, it might help a friend in the future. Sometimes, I had to resist the urge to spend all night reading posts, reminding myself that this forum was meant to support my life with HIV, not become my life. Other times, I felt like reaching through the monitor and slapping the fuck out of those whose replies always seemed to be "it gets better". Yeah, most times it does get better, but for some others it gets worse, then better, then worse again, hopefully returning to better. Then, there are those, for whom it only gets worse - sad, but true.

In the early days, I cried, I laughed, I was weaker, I got stronger, then weaker sometimes and I was hospitalized. Through it all, I learned to accept that for better or for worse, HIV was a part of my life, but I was determined not to let it take over my entire life.

Meds, Supplements & That Bitch Ms Sustiva

5 months after my diagnosis, I started meds(Atripla) and 'til this day, I have a love/hate relationship with meds. It was very reassuring reading most of the posts about Atripla - the one pill a day miracle! When I started taking meds, it started to piss me off, how easily a lot of people seemed to dismiss certain side effect concerns, when it came to the lovely Atripla. No, it doesn't cause lipo, no it doesn't cause hair loss, no it doesn't mess up your skin etc etc. The only thing most seemed to agree on, was that Ms Sustiva could be a biatch and make you a bit or a lot loopy. I was convinced most of the posters were living in cloud cuckoo land, as a result of their nightly parties with Ms. Sustiva(I had to personalize the bitch, if she was to be in my company daily). Of course, they were just posting what they had experienced, but dismissing the experiences of others really made me mad.

Atripla has been great in controlling the virus in my blood. Atripla also caused fat loss in my face within 2 weeks of starting meds(luckily it didn't get progressively worse, seeming to taper off after about 1 month - 6 weeks). Atripla gave me rosacea-like blotches on my face and mild pigmentation issues. Atripla accelerated my hair loss(which doesn't really bother me, coz I had been shaving my head for years anyway). Ms Sustiva sometimes makes it very difficult for me to work(brain fog) and still causes mood swings(which I have learned to deal with and control with the help of meditation, B12 and Omega 3/6/9). Atripla made me gain weight and sent my once "baby-perfect" lipid levels into orbit. Sometimes I have very entertaining and pleasant dreams and other times I wake up sweating and sobbing from nightmares.

I have been on Atripla for about 3.5 years now and taken drug holidays(which I don't advise). When I am off Atripla, my face clears up, I lose weight and I am calm with a clear head(and a little more hair). I continue to take it, because it works very well in controlling the HIV in my blood and even after my last "holiday" I am not yet resistant and have CD4 cells to spare. I don't advise using yourself as a guinea pig, as I have, or going off meds(unless you are working with a doctor). I only took holidays this year, when my CD4 count was and has remained in the 1k region and VL undetectable. During holidays, I take immune boosting supplements and Acyclovir daily without fail, which I also take while on meds, so the only change is not taking ARVs.

The amount of Sustiva in my blood is usually quite high, which would explain the side effects. I am a black male, a lot of black people absorb more Sustiva and I'm guessing other meds. So, listen to your body and gut feelings and don't let others (not even your doctor) dismiss whatever side effects you believe you are experiencing(unless you are simply a hypochondriac). Again, these are my experiences, do your own research and also remember that a lot of the side-effects most people are used to (or dismiss), do not necessarily take race into account. Luckliy, this is changing, as more studies are done on how different races metabolize drugs etc.

I am a strong believer in supplements(maybe even a bit of a junkie) - luckily my doctor also believes in supplements and encourages me to "keep doing what I am doing". My relationship with my doctor is important to me and I encourage everyone to find a doctor you are comfortable with(if you can). We email each other and I often take notes to my appointments with stuff I have researched, or questions I have.


Sex IN The City

One aspect of my life I still haven't reclaimed is my sex life. HIV pretty much killed my sex life. Since my diagnosis, I have only had sex on average about 3 times a year. The first year, I didn't have any sex at all. I know this is unhealthy and I am working on it. I intend to start another round of therapy sessions within the next 2 -3 weeks and I will be focusing on sex and dating. When I have had sex though, I must say it has been somewhat freeing to not have to worry about HIV. So although I haven't had a lot of sex, I have probably had the best sex since my diagnosis. It is a very conflicting part of my life.

I live in New York, a city full of beautiful men, but disclosure has infused an unhealthy dose of anxiety into the dating process. Again, I'm working on it. I'm more of a relationship person, so dating is actually more important than casual sex. I can't say I have had terrible experiences with disclosure, but that's probably because I have mainly gone on dates with guys I had a feeling were positive. At least a couple have stated they were negative, after I disclosed, even though I could smell the virus on them(joke - but sometimes you can just tell). I later bumped into one at GMHC(he was a client) and the other at my HIV+ only clinic. Denial is a bigger bitch than Ms Sustiva!

HIV is still a HUGE stigma in the black community and even in NYC, I have been in 1 bar in particular and heard comments like "be careful of that one, he has THE BEAST" or "you don't wanna hit that he got AIDS". The hypocrisy infuriates me, but is very much a part of MY reality - I date black(mainly) and latino men. I am considering expanding my horizons, in my pursuit of a healthy, loving relationship.


The Show Must Go On

Fuck what you heard - HIV SUCKS!!! If not physically, then mentally - but often both. I have learned to live with it, I am grateful to have been diagnosed in the age of meds that work quite well. I lost many friends in the 80s and 90s, so I saw the horror that was AIDS without the meds we have today.

Right now, I am in relatively good health, I have a strong immune system and I feel like the days of agonizing over losing 12lbs in one week are behind me. Now, I need to get my fat ass back in the gym and get my sexy back.

Mentally, I still have good days and bad days (like last week when another friend lost his battle with AIDS - yes, people still die from AIDS-related conditions), but mostly good. Physically, I am stronger, I have survived 2 bouts of pneumonia and other health issues, but I am not in denial. It probably won't be a walk in the park and this virus might eventually kill me, but for now, I am still here and the show must go on!!!

 
Diagnosed 9/18/06
10/13/06 - CD4:449, 33%,  VL:>500,000
11/20/06 - CD4: 392  VL:425,000
02/08/07 - CD4: 361, 16.9% VL:133,000
02/13/07 - Started HAART: Atripla
03/08/07 - CD4:401, 23.8% VL:643
06/05/07 - CD4:614, 33.6% VL:225
09/14/07 - CD4:612, 37%  VL: <50
12/14/07 - CD4:582, 38.5% VL:<50
4/11/08 - CD4: 658, VL: <50
3/5/09 - CD4: 847, 49% VL: <50
7/29/09 - CD4: 965, 50.1% VL: <50
12/28/09 - CD4: 925, 49.2% vl <50
9/16/10 - CD4: 1011 vl: <50

Offline newt

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  • Posts: 3,877
  • the one and original newt
Re: 4YRS ON - MY JOURNEY WITH HIV & MEDS (kinda long)
« Reply #1 on: September 30, 2010, 05:24:04 PM »
Hello

Thank you for your story.

It is well established that people with an African genetic heritage often process efavirenz/Sustiva more slowly, because of an inherited enzyme difference in their livers, which leads to higher drug levels and therefore side effects. You could ask your doc about trying a 400 mg dose. Or a switch. There are many effective combinations, and, yes, me too, I think if it ain't broke don't fix it, but the side effects you describe sound to me like it's a bit broke.

Good on the massive CD4 and low, low viral load, but this ain't everything in life, right?

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

Offline mecch

  • Member
  • Posts: 11,218
  • red pill? or blue pill?
Re: 4YRS ON - MY JOURNEY WITH HIV & MEDS (kinda long)
« Reply #2 on: September 30, 2010, 05:35:56 PM »
Please explain why you stick with Sustiva when other combos might help you avoid the CNS side effects?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline BKNYLivin

  • Member
  • Posts: 76
Re: 4YRS ON - MY JOURNEY WITH HIV & MEDS (kinda long)
« Reply #3 on: September 30, 2010, 06:00:46 PM »
newt - yeah, I have been thinking about a lower dose. will bring it up next appointment.

mecch - basically, what newt said:"if it ain't broke, don't fix it" is what has been preventing me, but as he pointed out, it is a bit broke.

To be honest, I NEVER expected to be on Sustiva this long. Always somewhat hoping that it would have stopped working, so that the decision would be taken out of my hands, which is so unlike me. I think it comes from an irrational fear of the earlier meds, which this thread has just made me realize. I cared for friends in the early days of meds/AZT (with the severe facial wasting, barfing and constant diarrhea) - I guess this is where it stems from. Years later I end up on Atripla, which is supposed to have minimal side effects but that wasn't the case for me. At some point, I must have decided better the devil you know, while hoping the next appointment would take the decision out of my hands.

Hmmm - thanks u guys for making me think!!! Might be time for change
Diagnosed 9/18/06
10/13/06 - CD4:449, 33%,  VL:>500,000
11/20/06 - CD4: 392  VL:425,000
02/08/07 - CD4: 361, 16.9% VL:133,000
02/13/07 - Started HAART: Atripla
03/08/07 - CD4:401, 23.8% VL:643
06/05/07 - CD4:614, 33.6% VL:225
09/14/07 - CD4:612, 37%  VL: <50
12/14/07 - CD4:582, 38.5% VL:<50
4/11/08 - CD4: 658, VL: <50
3/5/09 - CD4: 847, 49% VL: <50
7/29/09 - CD4: 965, 50.1% VL: <50
12/28/09 - CD4: 925, 49.2% vl <50
9/16/10 - CD4: 1011 vl: <50

Offline Snowangel

  • Member
  • Posts: 1,413
Re: 4YRS ON - MY JOURNEY WITH HIV & MEDS (kinda long)
« Reply #4 on: September 30, 2010, 09:06:36 PM »
Nice post, very well written.
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline numbersguy82

  • Member
  • Posts: 292
Re: 4YRS ON - MY JOURNEY WITH HIV & MEDS (kinda long)
« Reply #5 on: September 30, 2010, 09:34:06 PM »
Thanks for sharing this with us. I really enjoyed reading and relating to your personal experiences. I'm newly diagnosed but I hope at 4 yrs that I'm just as positive and successful as you! Thanks again
8/10- 73 cd4, 7%, and 300k VL *First Labs*
9/10- Started Norvir, Prezista, and Truvada
10/10- 511 cd4, 22%, and 886 VL
12/10- 498 cd4, 22%, and 106 VL
3/11- 529 cd4, 29%, and 101 VL
8/11- 620 cd4, 30%, and 74 VL- Switched to Atripla
10/11- 580 ce4, 30%, and 62 VL
12/11- 684 cd4, 31%, and FINALLY *UD*

Offline mecch

  • Member
  • Posts: 11,218
  • red pill? or blue pill?
Re: 4YRS ON - MY JOURNEY WITH HIV & MEDS (kinda long)
« Reply #6 on: September 30, 2010, 10:30:38 PM »
I am totally with you on the baggage that comes from scarier times, and which we sometimes don't unpack until we are forced to.  Please try to find an easier combo now, cause in a nutshell that sustiva sounds like the principal culprit of your treatment breaks - which you don't seem to be in favor of, otherwise.  You already earned the purple heart of sustiva courage many times over.  Geez, I couldn't deal more than a couple of months with that shit. When its bad, it is, as you write, a total bitch.

Thank you for your great testimony. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tednlou2

  • Member
  • Posts: 4,760
Re: 4YRS ON - MY JOURNEY WITH HIV & MEDS (kinda long)
« Reply #7 on: September 30, 2010, 10:36:19 PM »
Thanks for sharing your story.  When you say you had a few bouts of pneumonia, I'm curious whether it was PCP or bacterial?  Were/are you a smoker?  I ask, because I was told smoking was probably a factor in my getting bacterial pneumonia.  Hearing that was probably the biggest thing in scarring me into quitting.

Offline Zohar

  • Member
  • Posts: 234
Re: 4YRS ON - MY JOURNEY WITH HIV & MEDS (kinda long)
« Reply #8 on: October 01, 2010, 11:08:27 AM »
I'm truly amazed that anyone could be on Sustiva for 3.5 years whilst experiencing CNS side effects- that seems pretty masochistic to me. A friend of mine was on Atripla for a few months and didn't feel himself for much of the time. I suggested that he switch to something else, but he wanted to wait. Eventually, he did transfer over to a PI combination and said he feels SO much better.

Talk to your doctor ASAP about getting onto something that is easier for you tolerate.
''Poor is the man whose pleasures depend on the permission of another.''

Offline BKNYLivin

  • Member
  • Posts: 76
Re: 4YRS ON - MY JOURNEY WITH HIV & MEDS (kinda long)
« Reply #9 on: October 01, 2010, 03:09:21 PM »
Appreciate all the comments! Writing this and reading the comments has been quite therapeutic for me.
I realize that the images from the past and fear have been holding me back from switching, but Sustiva/meds has only been one part of my journey over the last 4 years, not the entire picture. As I said I'm a work in progress and writing this has made me realize that I need to focus on certain areas.

Thanks


Thanks for sharing your story.  When you say you had a few bouts of pneumonia, I'm curious whether it was PCP or bacterial?  Were/are you a smoker?  I ask, because I was told smoking was probably a factor in my getting bacterial pneumonia.  Hearing that was probably the biggest thing in scarring me into quitting.

Yes, I was a pack/day smoker(more if I went out) and it was bacterial. I had to quit, coz (post HIV diagnosis) if it wasn't pneumonia it was severe chest infections. Smoking and HIV just didn't seem to work for me, so I have been smoke-free for at least 2 yrs now (probably 3, the date is somewhere around).

I am totally with you on the baggage that comes from scarier times, and which we sometimes don't unpack until we are forced to.  Please try to find an easier combo now, cause in a nutshell that sustiva sounds like the principal culprit of your treatment breaks - which you don't seem to be in favor of, otherwise. 

Definitely will be addressing that at my next appointment. I guess looking back forced me to "unpack the baggage"

Thanks for sharing this with us. I really enjoyed reading and relating to your personal experiences. I'm newly diagnosed but I hope at 4 yrs that I'm just as positive and successful as you! Thanks again

You are welcome! I wish you all the best on your journey too - hang in there and fight.
Diagnosed 9/18/06
10/13/06 - CD4:449, 33%,  VL:>500,000
11/20/06 - CD4: 392  VL:425,000
02/08/07 - CD4: 361, 16.9% VL:133,000
02/13/07 - Started HAART: Atripla
03/08/07 - CD4:401, 23.8% VL:643
06/05/07 - CD4:614, 33.6% VL:225
09/14/07 - CD4:612, 37%  VL: <50
12/14/07 - CD4:582, 38.5% VL:<50
4/11/08 - CD4: 658, VL: <50
3/5/09 - CD4: 847, 49% VL: <50
7/29/09 - CD4: 965, 50.1% VL: <50
12/28/09 - CD4: 925, 49.2% vl <50
9/16/10 - CD4: 1011 vl: <50

 


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