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Author Topic: No One Like Me ..  (Read 4550 times)

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Offline Faith313

  • Member
  • Posts: 4
No One Like Me ..
« on: July 28, 2013, 07:21:51 PM »
Hello All,

I am 29 y/o and just newly dx 1 month ago. I am severly sad and feel alone! I am a very successful business man and can't help but question WHY did this happen to me when I took ALL necessary precautions. I live in NYC and my doc and therapist are very helpful, but I feel like "why me?" I feel like my legacy of me going to college and having a GREAT job is tarnished and now people (and myself), won't see me as accomplished, but rather just "sick."

Any who, I was told to go to GMHC groups, but I feel like everyone in that group w/ make me feel a lot more depressed and sad. I feel like everyone will be talking as if they're going to die, and frankly, I do not need to hear that! I feel like I"m really alone. Weird huh? I feel like I am the only young professional who got dx'd. Again, very weird. I know this is not true, but I can't help but to think/feel it.

Any help? How did some of you guys get thru? Does all HIV develop into AIDS? My CD4 is 790 and i decided to start meds, is this a good decision? My doc said my life span will be the same as my cohorts, but I am in soooo much disbelief. Any help?

Thx!

Offline jkinatl2

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  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: No One Like Me ..
« Reply #1 on: July 28, 2013, 08:29:37 PM »
Hello!

I am sorry about your recent diagnosis, but very glad you found this forum. While the initial learning curve is pretty steep, it's absolutely doable. If I were you, I would start with the LESSONS sections at the top of this web page. Everything that you need to know (well, more than you will likely ever need to know) about your infection and HIV in general will be there.

Here's the lowdown: Your CD4 count is really good. Solidly in the "normal" range. Although research is showing that the earlier you start treatment the better, you likely have time to read up on various therapies, so that you can have an educated opinion and work with your doctor to find the treatment that worked best for you. Remember, just because there are various one pill per day options doesn't mean that these combination pills will be right for you.

Also, if you find and take appropriate treatment (you are on the road to do just that) there is no reason why you shouldn't lead a full, healthy life without ever experiencing advanced HIV disease (AIDS).

You doctor is correct. People diagnosed today who are recently infected have roughly the exact same life/health expectancy as their HIV negative counterparts. Access to treatment and the ability/willingness to adhere to treatment seem to be the only remaining obstacles for those with new infections.

You are lucky. Some people wait until theyare very very sick to test, and often receive their diagnosis in a hospital bed (almost always years and years after infection). These people have a tougher go of it, and experience more of a struggle to regain a severely diminished immune system. You have a great immune system at the moment. Were I you, I would protect that.

One thing you might find in support groups (and even forums) is that more sick people attend/participate than healthy people. This might be because healthy people are living their lives, finding like people in other means, and simply don't require the help that people who are more physically/psychologically compromised might need. Sort of stands to reason.  But there are plenty of folks in this forum who fit your demographic.

Just please understand that other peoples' perspectives and experiences might not mirror your own, and take what you read with a grain of appropriate salt.

You really are going to be fine. It's a process, dealing with this life-altering event. Time will help, but please don't hesitate to seek out an HIV-qualified counselor to help you if things get too dark or intrusive.

Again, welcome to the forum.
"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 mecch

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  • Posts: 11,771
  • red pill? or blue pill?
Re: No One Like Me ..
« Reply #2 on: July 28, 2013, 09:07:14 PM »
Hello All,

I am 29 y/o and just newly dx 1 month ago. I am severly sad and feel alone! I am a very successful business man and can't help but question WHY did this happen to me when I took ALL necessary precautions. I live in NYC and my doc and therapist are very helpful, but I feel like "why me?" I feel like my legacy of me going to college and having a GREAT job is tarnished and now people (and myself), won't see me as accomplished, but rather just "sick."

You can fight the battles of the real stigma after you get used to the new HIV+ you. The new normal.  Your words above, and below, suggest you have misconceptions and fears and fantasies about who HIV+ people are, but now you are one too, so join the diverse club. 

HIV is a virus with no psychology, no morals, it doesn't target or avoid people based on anything like the human concerns that are presently destabilized for you.  Gender, sexuality, nationality, culture, age, education, income.  You get HIV when you have contact with the virus, not because of any of this other stuff.  So open your eyes and mind about how you define yourself, and others, based on any of this, and also how you understand sexual risk, which eventually you are going to have to think about.  (New considerations and negotiations come into play when you get HIV).


Any who, I was told to go to GMHC groups, but I feel like everyone in that group w/ make me feel a lot more depressed and sad. I feel like everyone will be talking as if they're going to die, and frankly, I do not need to hear that! I feel like I"m really alone. Weird huh? I feel like I am the only young professional who got dx'd. Again, very weird. I know this is not true, but I can't help but to think/feel it.

Why don't you go to the GMHC group a few times and see who is actually there? You have a pretty gloomy, predetermined expectation, and it may or may not be true of a real group you might try out. 

Also, a bit of advice:  you can get support from anyone - not just from other HIV+ highly successfull young entrepreneurs? 

I see that you understand already a bit of the fantasy of your thread title, "No One Like Me".  Yeah, its not unsual for new diagnosed people to feel "why me" - you're just going to have to take this as an opportunity to expand your definitions.

Are you gay? I'm assuming yes because of the referral to GMHC but I guess they do hetero support as well.  Anyway, if you are gay, and highly successful and educated and all that, try to get out a bit with other gays and you'll find plenty of other HIV+ guys...and from every one of your "categories".   If you scratch the surface a bit.  You'll see!

You say you know your conceptions "aren't true" so give yourself some time and get out there and discover how they aren't true. 
« Last Edit: July 28, 2013, 09:11:05 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline oksikoko

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  • Posts: 680
  • Writing the congressman again
Re: No One Like Me ..
« Reply #3 on: July 28, 2013, 10:25:31 PM »
There are many people like you. You are not alone. I've fallen quite far, but even I was once like you. ;)

I feel like my legacy of me going to college and having a GREAT job is tarnished and now people (and myself), won't see me as accomplished, but rather just "sick."

You control your own identity in this regard. Act sick, and you'll be viewed as sick. Act like a healthy, educated businessman with HIV, and you'll be viewed as such. Some people will even see you as being stronger, more capable, due to your accomplishing everything you do from now on while being HIV+. Use this fact as necessary.

Any who, I was told to go to GMHC groups, but I feel like everyone in that group w/ make me feel a lot more depressed and sad. I feel like everyone will be talking as if they're going to die, and frankly, I do not need to hear that!

I went to GMHC's newly diagnosed group. Everyone there was in a different place re: HIV. Yes, some are sad, some are confused. But some had already come to grips with it and were facing life and HIV head on. I don't think there are any active groups in the summer, but you'll need to do an intake anyway. Have you done that and do you know the details on how if not?

Any help? How did some of you guys get thru? Does all HIV develop into AIDS? My CD4 is 790 and i decided to start meds, is this a good decision? My doc said my life span will be the same as my cohorts, but I am in soooo much disbelief. Any help?

My personal opinion is that the best thing you can do is start and be adherent to your mess, so kudos. You're going to be fine, my friend. Life throws us all much worse things than HIV in 2013.

Lee
« Last Edit: July 28, 2013, 10:27:32 PM by oksikoko »
Code: [Select]
2013-10-03:                ☣ VL (?) off treatment ☣ CD4 (?) off treatment
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. ;-)

If no one complains, nothing will ever change.

Offline oksikoko

  • Member
  • Posts: 680
  • Writing the congressman again
Re: No One Like Me ..
« Reply #4 on: July 28, 2013, 10:40:20 PM »
Are you gay? I'm assuming yes because of the referral to GMHC but I guess they do hetero support as well.  Anyway, if you are gay, and highly successful and educated and all that, try to get out a bit with other gays and you'll find plenty of other HIV+ guys...and from every one of your "categories".   If you scratch the surface a bit.  You'll see! '

Yup. GMHC is very much not gay-only now. I'll re-post the clientele identification breakdown here:

48.4% gay
32.2% heterosexual
10.2% prefer not to identify
7.8% bisexual
1.4% lesbian

I suppose it's like KFC: just initials, no pesky 'Kentucky Fried', though GMHC refers to the whole gay thing in their literature. It would be hard to pretend there weren't a connection even if they wanted to, which, all jokes aside, I'm sure they don't.

And, yeah, the OP is in NYC. It's hard to find people who aren't HIV+ in certain circles. ;) Though negative people do turn up where you least expect them sometimes.
Code: [Select]
2013-10-03:                ☣ VL (?) off treatment ☣ CD4 (?) off treatment
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. ;-)

If no one complains, nothing will ever change.

Offline leatherman

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  • Posts: 6,230
  • Google and HIV meds are Your Friends
Re: No One Like Me ..
« Reply #5 on: July 29, 2013, 01:31:23 AM »
Act like a healthy, educated businessman with HIV, and you'll be viewed as such. Some people will even see you as being stronger, more capable, due to your accomplishing everything you do from now on while being HIV+. Use this fact as necessary.
shoot, just "Act like a healthy, educated businessman" period. ;) Believe it or not, we don't walk around with big red H's on our chests these days  :D and looking from the outside there's no way to tell someone has HIV.

Besides, just how is a businessman with HIV supposed to act anyway? How should someone act if they were a healthy, educated businessman with diabetes? or cancer? or heart issues? or high blood pressure? Why should people perceive him as stronger or more capable just because he's got some disease? just because he's got HIV? Should he get more credit in life than anyone else dealing with whatever issues it is that they have? And just how will people even know he has HIV?  ???

While HIV still is a very big deal on a personal level, sometimes people give it way too much credit and try to externalize their internal stigma. HIV is just another disease, like many others, that needs constant medication and constant monitoring to hold off the life-threatening part.

I say the OP needs to learn about this disease that he's got so he treats it properly. He needs to take medications when the time is right - and then stay adherent to stay healthy. And he needs to live his life like a healthy, educated businessman - which is exactly what he is and what he can still be in future. ;)

and Faith, as we often say here, Welcome! I'm so glad you found this site even if I wish you hadn't had to find this site. You'll find a lot of info and a lot of support. Instead of finding out that there's no one like you, you'll find that there are plenty of people just like you. People who have been saddened, troubled, confused, accepting, uneducated about the intricacies, supportive, and confused (yes, I listed that twice. Life is just confusing with or without HIV, so it was worth repeating), people who are sometimes high and sometimes low - all because of HIV in specific and life in general. Best wishes as you adapt to this latest curveball life has thrown at you and good luck starting out on your meds soon.  ;)
leatherman (aka mIkIE)


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

Offline oksikoko

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  • Posts: 680
  • Writing the congressman again
Re: No One Like Me ..
« Reply #6 on: July 29, 2013, 01:52:56 AM »
shoot, just "Act like a healthy, educated businessman" period. ;) Believe it or not, we don't walk around with big red H's on our chests these days  :D and looking from the outside there's no way to tell someone has HIV.

I like people to know. ;) It provides a context to a lot of my history. It's sort of like calling yourself 'gay'. You might not have every stereotypical attribute associated with that label, but it sure makes your choices and behaviors (i.e. dating men or possibly liking campy shit) easier to understand. It's a nice shorthand.

Besides, just how is a businessman with HIV supposed to act anyway? How should someone act if they were a healthy, educated businessman with diabetes? or cancer? or heart issues? or high blood pressure? Why should people perceive him as stronger or more capable just because he's got some disease? just because he's got HIV? Should he get more credit in life than anyone else dealing with whatever issues it is that they have? And just how will people even know he has HIV?  ???

1) How is a businessman supposed to act? The same as any, but he also deal with HIV. People on this site are always going on about how tough it is, and "it ain't over". We can't have it both ways. Either it's a different kind of disease that puts you in a special class, or it's diabetes of the immune system. Or do you argue it's both contextually?

2) "Why should people perceive him as stronger or more capable just because he's got some disease?" Because he's got friggin' HIV. You and I know that's not so big a deal medically these days, but the societal implications are huge and will be for at least half a generation. I pulled that figure out of my ass, but as long as people who remember the 80s are around, HIV will be special among diseases because people will treat you differently.

3) "Should he get more credit in life than anyone else dealing with whatever issues it is that they have?" Sometimes, yes. It depends. They still go on and on about first gay this and that (lately it's sports and country singing related, lol) but it is still a big deal (to the wider population) for an HIV+ person to succeed. Again, you and I know that there are millions of successful HIV+ people. But society still doesn't fully get that.

4) "And just how will people even know he has HIV?  ???" Maybe he'll decide to live proud, be out and tell them. ;) And that will be one step closer to HIV actually being the normal disease you speak of. Because "normal" people do get it, though society at large still thinks only people like me do.

I say the OP needs to learn about this disease that he's got so he treats it properly. He needs to take medications when the time is right - and then stay adherent to stay healthy. And he needs to live his life like a healthy, educated businessman - which is exactly what he is and what he can still be in future. ;)

No disagreement. Stay adherent.

Hey, Faith. Sorry to go on about these issues in your post. But at least you see we're all different, and life goes on after diagnosis. And soon you too might be arguing the arcana of positive life like it's a disagreement over the proper amount of fiber one should have in one's diet.
Code: [Select]
2013-10-03:                ☣ VL (?) off treatment ☣ CD4 (?) off treatment
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. ;-)

If no one complains, nothing will ever change.

Offline oksikoko

  • Member
  • Posts: 680
  • Writing the congressman again
Re: No One Like Me ..
« Reply #7 on: July 29, 2013, 02:42:06 AM »
Hey, Faith, one other thing. Since you're in NYC, here's one non-clinical resource and some other info on support you can get here.

If you're up for meeting other positive people, Positive Alliance has a weekly party at the Ritz Bar on the West Side. I've never been, but I've only heard positive (haha) things about it. They also do other social things like picnics in Central Park, and they just had a group at some international poz retreat. From the newsletter: "The weekly party is the cornerstone of our programming and is a social mixer for HIV+ gay men, their friends, and supporters. It's a safe, fun place to hang out for friendship, support, love, or whatever else you're looking for. There's always a host to greet you when you arrive, so it's comfortable to come alone. Make sure you help spread the word!"

This system won't let me post the newsletter URL, but you can find them on Facebook, etc. and sign up if you want.

It sounds like you may not need most of the services of an ASO beyond maybe emotional support, but these are some of the places that can help with whatever problems your diagnosis might bring up - and sometimes with things only tangentially related to your diagnosis.

GMHC: You know this one, but like I said, you'll need to do an intake to become a client. The general support line is 1-800-243-7692. To make an appointment for an intake, call (212) 367-1297 or 212-367-1056 or e-mail intake@gmhc.org. You can walk in at these times, but I'd make an appointment:

Monday, 11 am – 3:30 pm   
Tuesday, 10 am – 1 pm
Wednesday, 4 pm  –  5:30 pm   
Thursday, 10 am – 12 pm

Take proof of your HIV status (MllQ form, CD4 and viral load counts, or a letter from your doctor). They also have individual counseling. I do this, but I'm not sure how many slots if any are available or how they ration it out. Ask, though.

Housing Works: I don't know if you need any of their services, but if you're looking for health care, housing, harm reduction, case management, job training or legal services, sign up here: http://www.housingworks.org/contact/need-help/

LGBT Center: They have a couple of support groups, one for pre-HAART long-term survivors and one for newbies. Today (Monday) is the last day in the current session for the newly diagnosed, but they recur. Call 646-556-9300 and ask about the next session of the newly diagnosed group. You also have to do an intake for this, so might as well call early.

I hope something here helps.
Code: [Select]
2013-10-03:                ☣ VL (?) off treatment ☣ CD4 (?) off treatment
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. ;-)

If no one complains, nothing will ever change.

Offline oksikoko

  • Member
  • Posts: 680
  • Writing the congressman again
Re: No One Like Me ..
« Reply #8 on: July 29, 2013, 05:33:44 AM »
Sorry - I can't edit my post, so I have to reply again. According to the online calendar, there's an ACRIA support group for HIV+ and HIV- Affected Gay Men at the LGBT Center on Thursdays from 6:30 to 8:00. Call 212-924-3934 for more information.

I don't know if you're gay-identified and I guess you don't have to be: Acria has a "Young Friends" group for young professionals (sounds like a certain 29-year-old businessman we know) who do special events, art sales, and cultural programs to benefit the organization.
Code: [Select]
2013-10-03:                ☣ VL (?) off treatment ☣ CD4 (?) off treatment
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. ;-)

If no one complains, nothing will ever change.

Offline Faith313

  • Member
  • Posts: 4
Re: No One Like Me ..
« Reply #9 on: July 29, 2013, 06:24:48 PM »
OMG! Thank you all so much for the support and information reg HIV. You all cannot imagine how helpful you all are and what you've just done for me! Thx oksikoko for the group information. So much to look thru...

I do need to do more research, but I'm still not identifying as + yet (it's going to take some time). I take fish oil/multi vitamins/and weight train 5 xs a week for 8 yrs now. I eat all fresh food (nothing processed), and have been doing this for the past few years. I really take care of my body! So I'm hoping that my health/nutrition won't be problematic w/ HIV. I'm very adherent to my MV and fish oils, so adding a pill to my routine is just psychological to me.

Offline mecch

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  • red pill? or blue pill?
Re: No One Like Me ..
« Reply #10 on: July 29, 2013, 11:17:54 PM »
Your exercise routine and diet will keep you fit for your life. They won't do anything against HIV - this is based on your genetics and when its time to start HAART, its the HAART that controls the virus. Nothing else.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline NewPerspective

  • Member
  • Posts: 17
Re: No One Like Me ..
« Reply #11 on: July 30, 2013, 02:15:11 AM »
Faith, thanks for your response to my post. I feel the same as you do to some extent. We're actually almost the same age. I went to a great college, did the whole Silicon Valley tech stuff, explored the world, and, now this. A little anticlimactic, don't you think? Sorry, perhaps that was too pessimistic. I feel like I let myself down based on my trajectory, as far as where I thought I was heading. Time to reassess.

I guess it's a matter of coping with my new reality that's a challenge. Reading the responses to your original post, there's a lot of support, information, and assistance in NY. You said that after a month you're at a much better place, although I'm sure you're still working on it. Hopefully, after a month I'll get to where you are.

This whole thing has turned my life a bit upside down. I really have to get back to my routine: gym, run, swim 3x/week. Fresh fruit and fresh juice, daily. I just haven't been able to drum up purpose or inclination. Soon, I hope.

In any case, I gotta keep the "Faith"313.

Offline mecch

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  • red pill? or blue pill?
Re: No One Like Me ..
« Reply #12 on: July 30, 2013, 02:30:24 AM »
I'm glad both of you joined this forum.

Any doctor should tell you that you have a normal life span ahead of you.

I don't know where you all got this idea that ambition, success, diplomas, etc have anything to do with getting or avoiding an STD.  ???

For what its worth I knew several Ivy Leaguers with HIV in the 80's, now DEAD. I had friends and acquaintances openly HIV+ on campus in the 90's when I was in school again. Two died in the 90s, not making it to HAART.   

Nobody thought we were immune to HIV for our class, success, privilege, blah blah.  The rules were all explained in the 80s...  HIV+ people were all around us. Its an STD for crissakes, everyone can get one.  I knew a mayflower blueblood, dead.

10s of thousands of the most ambitious and talented and successful people. All dead.
 
Did you guys miss the history lesson?  You can watch some documentaries or read some books, if you are interested...

Please remember to count your blessings you are getting this diagnosis in 2013 when the present and future looks bright. 
« Last Edit: July 30, 2013, 02:36:53 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline NewPerspective

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Re: No One Like Me ..
« Reply #13 on: July 30, 2013, 03:32:25 AM »
Mecch ... too true you are. Sorry, I didn't mean to come off as self absorbed or privileged ... both, I am truly not.

Yes, it is a blessing that research has come so far that Faith and I can count our blessings for the type of meds available. But, that's not to say that life, in and of itself, has twists and turns. What ultimately delivers us to our maker (or otherwise, depending on your preference) is most often not what we expect.


Offline mecch

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  • red pill? or blue pill?
Re: No One Like Me ..
« Reply #14 on: July 30, 2013, 09:33:46 AM »
life, in and of itself, has twists and turns.
You got that right!

I picked up that you know "no one like me" isn't true.  Its a common reaction to the diagnosis. Though why a gay guy would imagine "no one like me" escapes me, its more often the straights who seem to express this...  Another common reaction that seems related is - but I did everything right - i followed the rules.  Or, i only had unsafe sex one time...

I was just pointing out more reasons the "no one like me" isn't based on reality.  Just because the sooner a newly diagnosed person adjusts the view through the lenses, the better. 

Also its very important for living well with HIV to refuse ALL anthropomorphism of HIV.  Its a virus.  Someone thinking "i thought only that category of people got AIDS" doesn't help anyone least of all HIV+ people. Its too close to thinking certain people deserve it, somehow, or its to be expected, for them, or its of no concern really, because I'm here and they are there and their concerns don't really touch my existence... 

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

Offline Faith313

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Re: No One Like Me ..
« Reply #15 on: July 31, 2013, 02:45:03 PM »
Got my first numbers back and the doc said that my CD4 count is 969 and my viral load is 37,000...before it was 100,000. Is this unusual for it to go down and CD4 to go up so much w/o meds?

Offline Ann

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Re: No One Like Me ..
« Reply #16 on: July 31, 2013, 03:18:39 PM »
Got my first numbers back and the doc said that my CD4 count is 969 and my viral load is 37,000...before it was 100,000. Is this unusual for it to go down and CD4 to go up so much w/o meds?

No, it's completely normal in a new infection. It's your body getting to grips with the virus, and doing a good job of it.

Many people's bodies can hold hiv at bay for several years, although the current treatment fashion (particularly in the States) is to get people on treatment right away, regardless of the CD4 and VL lab results.

Hopefully Leatherman will pop in with his nifty little chart that I don't have a link to, that explains it all.
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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 leatherman

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Re: No One Like Me ..
« Reply #17 on: July 31, 2013, 04:55:37 PM »
Hopefully Leatherman will pop in with his nifty little chart that I don't have a link to, that explains it all.
ask and ye shall receive  ;) :-*

I really do use this so much that I ought to get this blown up poster-size and slap it on my bedroom wall. It'll definitely make for interesting bedroom-talk when I have someone. 8) I mean "someone over for a visit". LOL

after the initial infection, the viral load goes up a lot and cd4s drop; but then, as the body adjusts to the infection, the viral load drops back low and the cd4s bounce back up. By the time a person has been infected for 4-6 months, "clinical latency" sets in. During this time period of 1 to 10 yrs, cd4s very slowly decline while the viral load very slowly climbs. Eventually, without medications, AIDS and Death happens.

The lesson to then learn from this graphic and info is that by the time the first year goes by it is not surprising that a person will have a low viral load and high cd4 count. That's how it usually happens.  ;)

However, here's the spot when the title of this thread is appropriate. The catch to staying off treatment is what happens in 3, or 5, or 7, or the average of 10 yrs. Ay. There's the rub. No one else is exactly like you and not everyone passes through this chart in the average of ten years but almost all of us do follow the trends this chart shows (except for long term non-progressors).

In a similar vein, no one else is like you and not everyone deals with the same side effects of the meds - if they have side effects at all. By the time you really are considering medications, I suggest you google the drug name and the words "package insert". You'll get a document that not only explains the side effects but it will show how few people actually have those side effects  ;)

Ann :-* is right about her point too. I mean what other disease do we NOT treat; but let the patient spend years getting sicker and sicker before beginning treatment? Of course, waiting to treat HIV until the cd4 count is 350 or 500 is based on the history in the 90s of having horrible medications with horrible side effects - though I will point out that those "horrible" meds kept a LOT of people (like me!) from dying, and at times even gave us back a semblance of life.

Nowadays the trend in the US is starting to be to begin treatment immediately with our much improved medications. Studies have shown, and are showing, that keeping a person's immune system in tact, not letting their cd4s drop, putting the brakes on some of the overall systemic inflammation brought on by HIV - all of those actions are helping people stay alive even longer, and even healthier. The obstacles tend to be getting access to medications, getting patients to remain adherent, and frankly, getting them over the stigma of actually starting meds.
leatherman (aka mIkIE)


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

Offline oksikoko

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Re: No One Like Me ..
« Reply #18 on: July 31, 2013, 11:07:38 PM »
I believe OP is in NYC.

Office of the Medical Director, New York State Department of Health AIDS Institute: Guideline Number 1: "All patients with chronic HIV infection should be evaluated for initiation of ART, regardless of CD4 count."

http://www.hivguidelines.org/clinical-guidelines/adults/antiretroviral-therapy/

Lee
Code: [Select]
2013-10-03:                ☣ VL (?) off treatment ☣ CD4 (?) off treatment
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. ;-)

If no one complains, nothing will ever change.

Offline leatherman

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Re: No One Like Me ..
« Reply #19 on: July 31, 2013, 11:35:02 PM »
http://www.hivguidelines.org/clinical-guidelines/adults/antiretroviral-therapy/
yes that is the recommendation. Of course though, they can't legally force anyone to take ARVs, so it's always at the patient's discretion (which is why combating the internalized stigma against medications is so important) - not to mention that they also need to have access to medications.

Quote
Recommendations:
Evaluation and preparation for ART initiation includes each of the following essential components:

Full discussion with the patient about risks and benefits of ART (see Section A: Counseling and Education Before Initiating ART)
Assessment of patient readiness
Identification and amelioration of factors that might interfere with successful adherence to treatment, including inadequate access to medication, inadequate supportive services, psychosocial factors, active substance use, or mental health disorders
Clinicians should refer patients for supportive services as necessary to address modifiable barriers to adherence. An ongoing plan for coordination of care should be established.

Clinicians should involve patients in the decision-making process regarding initiation of ART. The patient should make the final decision of whether and when to initiate ART.

When the decision to initiate treatment is made, ART should be prescribed and monitored by, or in consultation with, clinicians who have experience in managing ART.
leatherman (aka mIkIE)


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

Offline Ann

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Re: No One Like Me ..
« Reply #20 on: August 01, 2013, 08:01:49 AM »

Ann :-* is right about her point too. I mean what other disease do we NOT treat; but let the patient spend years getting sicker and sicker before beginning treatment? Of course, waiting to treat HIV until the cd4 count is 350 or 500 is based on the history in the 90s of having horrible medications with horrible side effects - though I will point out that those "horrible" meds kept a LOT of people (like me!) from dying, and at times even gave us back a semblance of life.


It still hasn't been proven that there's much, if any, benefit to starting meds when a person's CD4 count is consistently over 500. I'm only talking about a direct benefit to the poz person, not about the possible benefits to the poz person's sexual partners (treatment as prevention).

When I was diagnosed in 2001, the treatment fashion had very recently changed from "hit hard, hit early" (as they called it between 1996 and 2000 or so) to waiting until the CD4s were consistently in the 200-250 range. This was, as you point out, because we were finding out the side effects of the early meds could have life-long consequences.

The "treat between 350 and 500" fashion is much more recent - in the past four or five years or so, and it's really only in the States where the fashion is to treat at diagnosis. In the UK and Europe for example, most doctors will not treat until you're consistently in the 350-500 range, preferably nearer the 350 range.

This is because while the newer meds ARE much easier to take with fewer side effects, we still have no way of knowing what long-term effects they may have as they are still relatively new drugs, particularly when compared to an average life-span.

Take Sustiva, for example. We're only now beginning to understand that some people don't start having the CNS-related side-effects until after they've been on it for years and years. Who knows what's down the road for other, newer meds?

I went for fifteen years without meds (yes, diagnosed in 2001, but I definitely got my virus in the spring of '97) and my only regret is that I wasn't permitted to start in 2009 or '10, rather than 2012. I'm very happy that I didn't start at diagnosis.

My numbers looked good, but I was starting to feel crappy more often than not, but it took years to get to that place. Everyone is different though, and so one should always listen to their own body.

I have to admit - when I see a person going on meds when they have high CD4 counts, I think it's very possibly a waste of money and resources. The scientific jury is still out, and so am I.
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 oksikoko

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Re: No One Like Me ..
« Reply #21 on: August 01, 2013, 01:15:37 PM »
I went for fifteen years without meds (yes, diagnosed in 2001, but I definitely got my virus in the spring of '97) and my only regret is that I wasn't permitted to start in 2009 or '10, rather than 2012. I'm very happy that I didn't start at diagnosis.

...

I have to admit - when I see a person going on meds when they have high CD4 counts, I think it's very possibly a waste of money and resources. The scientific jury is still out, and so am I.

It's funny. If I weren't on meds, I'd feel cheated, like they were stealing years from me.  Different strokes! Avoiding all that virus running around in me feels great. I'm afeared of chronic inflammation more than I am of cobicistat. Though not more than I am of Sustiva. ;)

Leatherman, yes, I didn't mean to post that as if it were a diktat. I just meant that they're recommending offering it to everyone. I've heard rumors that not everyone is treated equally in this respect (i.e., some people aren't offered treatment at the doctor's discretion based on dubious criteria).
Code: [Select]
2013-10-03:                ☣ VL (?) off treatment ☣ CD4 (?) off treatment
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. ;-)

If no one complains, nothing will ever change.

Offline Schnauzer

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Re: No One Like Me ..
« Reply #22 on: August 01, 2013, 11:26:30 PM »


Take Sustiva, for example. We're only now beginning to understand that some people don't start having the CNS-related side-effects until after they've been on it for years and years. Who knows what's down the road for other, newer meds?



I'm aware that there can be CNS-related side-effects with Sustiva, although I was unaware that these side effects could begin years after initiating treatment.  Where did you find this information? I'm interested in reading more about it.
« Last Edit: August 01, 2013, 11:28:51 PM by Schnauzer »
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Offline Jeff G

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Re: No One Like Me ..
« Reply #23 on: August 02, 2013, 12:08:04 AM »
I'm aware that there can be CNS-related side-effects with Sustiva, although I was unaware that these side effects could begin years after initiating treatment.  Where did you find this information? I'm interested in reading more about it.

Atripla was easy for me to take initially but after many years I developed significant cns issues from the drug . There may be a study documenting this but I'm unaware of it , however there are a few of here on this site that have had almost identical late onset cns symptoms for Atripla that vanished after a med change . Anecdotal claims must be taken with a grain of salt most of the time but for us that suffered from the cns effects of Atripla only to recover quickly after a med change are sure that it happens even with the absence of a study .

Here are some discussion on the topic .  http://forums.poz.com/index.php?topic=47901.0 

Online mitch777

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Re: No One Like Me ..
« Reply #24 on: August 03, 2013, 11:01:32 AM »
Atripla was easy for me to take initially but after many years I developed significant cns issues from the drug . There may be a study documenting this but I'm unaware of it , however there are a few of here on this site that have had almost identical late onset cns symptoms for Atripla that vanished after a med change . Anecdotal claims must be taken with a grain of salt most of the time but for us that suffered from the cns effects of Atripla only to recover quickly after a med change are sure that it happens even with the absence of a study .


I'm an example of what Jeff experienced. The only difference being is that while my CNS systems have greatly improved, they haven't completely vanished and I have doubts they ever will. The link Jeff provided is worth the read.
31 years hiv+ (oct. 2013) with a curtsy.

 


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