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Author Topic: I'm done  (Read 6918 times)

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Offline Almost2late

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I'm done
« on: May 21, 2014, 10:59:38 am »
Some here were nice but it seems more like cliques of people on this forum and I finished highschool along time ago.. Once your a little different, your ignored.. Don't need this negative bullshit in my life, especially now.. Thanks Jeff for your help, it was appreciated

Offline Jeff G

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Re: I'm done
« Reply #1 on: May 21, 2014, 11:11:33 am »
May I ask what brought you to this point ? . I hate to see you leave unless you no longer want to be here .
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
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Offline wolfter

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Re: I'm done
« Reply #2 on: May 21, 2014, 11:23:54 am »
I'm really sorry you're feeling this way.  I briefly looked through your most recent posts and couldn't locate anything that seems out of order.

You're 37 posts in and many of the "clique" have been here for years and even meet up once a year.  Many of us communicate away from these forums also.  It's just natural that we might feel a little closer to those we've shared with for years.  I personally think most do a great job of trying to welcome people here.

OH, and we're all very different and that has never stopped the forums from being a great place to interact.  Hopefully you can clue us into whatever the perceived actions are that led to this opinion.

best wishes either way
wolfie
Being honest is not wronging others, continuing the dishonesty is.

Offline Ann

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Re: I'm done
« Reply #3 on: May 21, 2014, 11:48:24 am »
Some here were nice but it seems more like cliques of people on this forum and I finished highschool along time ago.. Once your a little different, your ignored.. Don't need this negative bullshit in my life, especially now.. Thanks Jeff for your help, it was appreciated

Hey Almost, I hope you reconsider. The door will always be open for you regardless. None of us see eye-to-eye on every subject, but when the chips are down you'll find plenty of shoulders to lean/cry on here. I hope you don't cut yourself off from that, or from the wealth of experience and knowledge that so many take the time to share.

Whatever you decide, I hope you "live long and prosper", like it says on the shirt you wore to your local aids walk. (You made me smile when you shared that.)

Hope to see you around soon,
Ann
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 absopozilutely

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Re: I'm done
« Reply #4 on: May 22, 2014, 12:27:18 am »
I really debated posting about this one. I can see where you're coming from being a newbie I have felt the same way at times, however, when I do post everyone welcomes the topic and usually responds. I will say that yes we probably get lost in the conversation for a bit, but I've never started a friendship and started being a part of their group instantly. Think from the perspective of people who have been on here for years, how many people come and go, and do exactly what you're saying you're going to do, leave. Why open yourself up to all that drama and pain so quickly, I personally just keep responding and talking to people on here and they talk back. It takes time to build a relationship and time and relationships are something everyone on this site values the most. See, I took time to respond to you, as did others. Give it a shot.
Trust me, we can all use more friends, and this is exactly the place to find some truly authentic people who have no time for drama, "high school Games," etc.


-Abso
12/18 Infected
2/4 12:22pm tested POZ via ORAquick
2/19 WB Confirmation
2/4-2/19 VL 104,678 CD4 407
3/2 Genotype back, and Started Complera
4/2-CD4 688 38% and VL 1,600
5/1-CD4 592 42% and VL 336
5/22-CD4 732 31% and VL 109 :( STILL NOT UD!
5/31 Switched to Stribild :( I'll miss you Complera!
6/19 CD4 508 35% and VL UD!!!!! Crying at work like a baby.
9/19 CD4 799 46% VL UD yayyyy
5/1/19 CD4 1100 VL still UD.

Offline phoenix

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Re: I'm done
« Reply #5 on: May 22, 2014, 08:46:23 am »
Hi almost2late    Being new here just wanted to let you know that some of us out here have a hard time deciding to reply to others posts , and finding the words once we do. Don't  take my silence as not caring or indifference. I have gained valuable insight into my condition and myself through your post and the postings of others. Would ask you think about it before you go. If your going to leave just wanted to thank you for sharing. Wish you all the best.
A positive attitude may not solve all your problems but it will annoy enough people to make it worthwhile.                              The point of the journey is not to arrive.

Offline Ann

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Re: I'm done
« Reply #6 on: May 22, 2014, 10:11:12 am »
Almost, I've been wondering why you thought you'd been ignored so I dug around in your posting history and noticed you never got a reply to this post below in the Sustiva/Atripla thread:

Hi everyone,

Still on Atripla and I never miss a dose. My cd4 is up to I think 184:D, but my VL still not undetectable yet, at about 600:P, I think thats what he said.. Wont know for sure till I get a hard copy for my records.. also the doc said geno & pheno test show no resistance (again).. Now I am happy to have my cd4 climb up, but I'm a little concerned that my VL didn't go to UD.. Why does it take so long to go down? Is Atripla weaker than other meds? The test was from May 6, I was expecting something in the low 100s to UD.. Is this normal? I'm sorry for being such a fucking whiner, but you guys are like my HIV guru's ... "Help me Obi Wan Kanobi you're my only hope."  :) Thanks

Questions do get overlooked from time to time, but it doesn't mean you've been intentionally or maliciously ignored. You'd posted that on a weekend, and if a post is going to be overlooked the weekend is the time it would most likely happen. I'm sorry this happened to you.

To answer your questions....

You were diagnosed with only 13 CD4s, and KS. I can't find mention of what your VL was before you started treatment, but if I remember correctly you used to have it in your signature line and it was extremely high.

You've obviously had untreated hiv for quite some time, and it can take time for the VL to go to UD in a case like yours. I've seen some people struggle along for as much as a year before finally getting that magical UD in their labs.

The fact that you've gone down to 600 in a relatively short space of time is fantastic and bodes well for you to be UD very soon. Be warned though, those last few can be somewhat difficult to shift so you may still be looking at a few months wait.

Your CD4s are going up quite quickly too, all things considered. You're looking good so far, so try to not stress too much about not being UD just yet. Not all that long ago you would have been pretty much UD now anyway - today's VL tests are much more sensitive than they used to be and some detect right down to around 20.

Your labs are all going in the right direction, so please just keep taking your meds every day, relax and have a little faith that things are going to be ok. OK? :)

But again, seriously, your questions weren't purposely or maliciously ignored. Here's a little tip - any time you have a question that directly pertains to you and your treatment that you feel is very important, please start your own, new thread about it rather than tacking it onto another already existing thread. It's easier to miss someone's important questions when it's tacked on somewhere.

Hugs,
Ann
xxx
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 Almost2late

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Re: I'm done
« Reply #7 on: May 22, 2014, 12:32:34 pm »
Sorry for being an idiot, I don't know why I'm behaving like this.. Lately I cry and cry and I get nasty with people, including my doc.. I'm usually a cheerful type person who loves life.. My emotions are all over the place... Thank you Ann for what you said here.. I also want to thank Mini's thread, she made me smile and gave me hope and she's only 13.. my god how could I be so blind and be mean to people who have helped me through the most difficult part of my life.

Been trying to find a support group in my area where I would fit in but its not easy.. Honestly, no one here did anything wrong to me.. I'm just going through stuff in my head.. Once again sorry and thank you for your understanding.. I will get my shit together.. Frank

Offline Jeff G

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Re: I'm done
« Reply #8 on: May 22, 2014, 12:40:50 pm »
I understand and I am so happy you are back . You will not be the first or last to get upset and vent about it here on the forums so don't beat yourself up ... we can do that for you now and then you know  ( joke ) .   ;)
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline Joe K

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Re: I'm done
« Reply #9 on: May 22, 2014, 12:45:07 pm »
Hey Frank,

You are not being an idiot because your emotions are all over the place.  All of us have had times where our emotions simply overpower us and it's all part of adjusting to being poz.  It takes time to come to grips with our infection and we do understand when there are days that you simply cannot cope with all that is going on in your life.

All I would ask, is when you feel the walls closing in, share that with us and hopefully we can help you to get to a better place.

Joe

Offline Almost2late

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Re: I'm done
« Reply #10 on: May 22, 2014, 12:59:16 pm »
Thank you Jeff and Joe, I will..  :)

Offline Mini

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Re: I'm done
« Reply #11 on: May 22, 2014, 01:20:44 pm »
Mr. Frank, you are only the second thread I have been allowed to post in other than my thread, so you should also feel privileged but not as privileged as Matt because he was the first one. First, thank you for reading my thread. You should post over there so I can talk to you more because after this, I have to go back to my thread and post.

It is OK to get mad. I get mad sometimes and just yell at whoever is around. After, though, I have to tell them that I am sorry (mostly because my parents make me, not because I am always sorry). You are now part of a great big circle of friends and who wouldn't want to be part of that?  Maybe you can come to San Diego in the summer and we can meet.  Keep posting because other people will talk to you but maybe you will have to talk to them first.

Mini

Offline Dan0

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Re: I'm done
« Reply #12 on: May 22, 2014, 02:04:14 pm »
Sorry for being an idiot, I don't know why I'm behaving like this.. Lately I cry and cry and I get nasty with people, including my doc.. I'm usually a cheerful type person who loves life.. My emotions are all over the place...

That was me on Atripla.  I'm not saying that this is the cause of any of your issues - it very well may NOT be - but it is a sneaky pill that can work some mysterious stuff over the course of time.  For some, nothing but the best year in and year out. Others, like myself, after a few years of 'nothing' what you describe above becomes the daily norm.  Again, not saying that this is the cause of any of your issues but DO bring this up to your Dr.  I'm going to assume that you've read the threads on Atripla and the issues that may come about - this sounds very similar.  There is no trigger or flashing red light that says, "THIS IS ATRIPLA!!".  You just have to know that something isn't quite right in there and look to your Dr. because it may be a side effect.

BTW - welcome back!
"Honey, you should never ask advice from a drunk drag queen who has a show to do." - JG

06/2002 DX
10/2006 Atripla UD
10/2013 Stribild Still UD
04/2016 Genvoya UD

Offline Almost2late

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Re: I'm done
« Reply #13 on: May 22, 2014, 02:52:02 pm »
Thanks so much Dan.. I will definitely bring this up with my Doc.. also my head feels stuffy alot so maybe it might be the meds..  BTW, I was only gone one day  :-[

And thank you Mini.. Your such a strong, smart and sweet young lady.. thanks to your momma too  :)

Offline 2tcells

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Re: I'm done
« Reply #14 on: May 22, 2014, 03:17:02 pm »
Holy smokes 55 to 184 thats great I havnt seen that post either but good to hear just wait it out til your ud and all ur numbers will be real good
7-4-13 diagnosed   cd4- 2      vl-220,600
8-3-13                     cd4- 4      vl- 448
9-3-13                     cd4- 40    vl- ud
11-3-13                   cd4- 54    vl-ud
1-9-14                     cd4- 62    vl- 43
4-3-14                     cd4- 110  vl-ud
8-5-14                     cd4- 95    vl-ud
9-23-14                   cd4- 97    vl-ud
1-22-15                   cd4- 156  vl-ud
4-14-15                   cd4- 122  vl-ud
6-12-15                   cd4- 148  vl-?
8-15-15 start stribild
9-3-15                     cd4- 152 vl-ud
11-25-15                  cd4- 211 vl-20
2-17-16                   cd-4 194 vl-ud
4-1-16 start genvoya
5-10-16                   cd-4 220 vl-ud
9-19-16                   cd-4 182 vl-ud
12-2016                  cd-4  267!vl-ud
2018 cd4 187 switching meds

Offline drewm

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Re: I'm done
« Reply #15 on: May 22, 2014, 04:13:23 pm »
Glad your back!
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX -  FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS


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

Offline mitch777

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Re: I'm done
« Reply #16 on: May 22, 2014, 04:38:28 pm »
Hey Frank,

Emotions seems to be my middle name at times. lol.

As far as being ignored goes, I often feel like I'm ignoring others at times. Not intentionally, but my memory is not what it used to be. To be honest, I can't even remember if I welcomed you. So many people to keep track of, so many threads.

Being different? Well, the people here that I interact with most frequently seem to cover the entire spectrum of the rainbow. It took me awhile to "settle in" but I am so grateful of having hung in long enough to develop some friendships which I think will last a lifetime.

m.

ps- that mini is a genius!
33 years hiv+ with a curtsy.

Offline Ann

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Re: I'm done
« Reply #17 on: May 23, 2014, 05:13:58 am »

Thank you Ann for what you said here..


You're welcome Frank. I'm really happy to see you posting again. I had a feeling there was more to this than met the eye. It kept nagging away at the back of my mind so I'm glad I pursued it further. I hope my answers to your questions about not yet being UD helped ease your mind.


Sorry for being an idiot, I don't know why I'm behaving like this.. Lately I cry and cry and I get nasty with people, including my doc.. I'm usually a cheerful type person who loves life.. My emotions are all over the place...


Don't beat yourself up over it. You're still going through that rollercoaster ride of emotions that comes with diagnosis...

BUT - like Dan0 mentions, some of it could very well be down to the Sustiva portion of your Atripla, more so than the emotional shock of diagnosis. Particularly if you've dealt with other blows/disappointments/game-changers in your life without these types of mood swings and personality changes.

You were diagnosed in January, am I right? The wildest part of the emotional ride should have calmed down by now, although this will vary from person to person. You just don't strike me as a person who would let anything bring him down for too long. So my vote goes to a problem with Sustiva.

Sustiva just doesn't play nicely with a fair amount of people. Sure, it will kick hiv's ass regardless, but when it starts kicking in the head of the person taking it, it's time to dump it.

There are far too many other very effective combos you can take these days to have to put up with Sustiva diminishing your quality of life, quality of sleep or just as importantly, the quality of your relationships.

When do you see your doctor next?

Hang in there in the meantime, and never forget - we've got your back.

(((((Frank)))))

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 Theyer

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Re: I'm done
« Reply #18 on: May 23, 2014, 06:00:05 am »
Some here were nice but it seems more like cliques of people on this forum and I finished highschool along time ago.. Once your a little different, your ignored.. Don't need this negative bullshit in my life, especially now.. Thanks Jeff for your help, it was appreciated

If its any consolation , I felt the same way about 3 months after joining  , still do sometimes . And its an important issue to have pointed out every now and again .  Each off us using the forums have a lot to either deal with or have done, during such periods Skin can feel very thin.

This thread showed me why its worth perserving , and I am glad you had the will to return.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Andy Velez

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Re: I'm done
« Reply #19 on: May 23, 2014, 08:46:47 am »
Frank, I am glad you were able to hear what members are saying to you. HIV is definitely not something to cope with in isolation.

And as Ann so accurately (as always) pointed out, Sustiva can be very problematic in its side effects. Fortunately there are other meds which can do the job with less side effects.

I'm looking forward to hearing more from you and you continue onward and settle in to the supportive and helpful fellowship that exists here.

Cheers,

Andy
Andy Velez

Offline Almost2late

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Re: I'm done
« Reply #20 on: May 23, 2014, 11:00:02 am »
WOW!! :) Thank you everyone.. I feel so loved  <3<3<3 .. I know you know I'm pretty new to hiv stuff, but you should also know I've never participated in forums, this is my first so excuse me cause I type slow.. and yes I do beat myself up about contracting hiv cause I shoulda knew better.. I remember how this disease was back in the 80's, I was living in new york city at the time and saw how people suffered, so LTS people I don't know how you did it but I'm glad your still here with us.. But now I got it and meds are better than before and we know so much.. this is my go to place for emotional and educational support.. my hiv family.. Thanks guys, "I LOVE YOU", can I say that?

Love always Frank

Offline phoenix

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Re: I'm done
« Reply #21 on: May 23, 2014, 09:23:10 pm »
welcome back
A positive attitude may not solve all your problems but it will annoy enough people to make it worthwhile.                              The point of the journey is not to arrive.

Offline Joe K

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Re: I'm done
« Reply #22 on: May 23, 2014, 10:11:54 pm »
WOW!! :) Thank you everyone.. I feel so loved  <3<3<3 .. I know you know I'm pretty new to hiv stuff, but you should also know I've never participated in forums, this is my first so excuse me cause I type slow.. and yes I do beat myself up about contracting hiv cause I shoulda knew better.. I remember how this disease was back in the 80's, I was living in new york city at the time and saw how people suffered, so LTS people I don't know how you did it but I'm glad your still here with us.. But now I got it and meds are better than before and we know so much.. this is my go to place for emotional and educational support.. my hiv family.. Thanks guys, "I LOVE YOU", can I say that?

Love always Frank

Frank,

The only way to move past your role in your infection, is to forgive yourself, because you made a mistake.  We are all human and one of the keys to a fulfilling life, is to recognize those things you cannot change, so why waste the effort.  You need to become your own best friend... because best friends always forgive.

Joe

Offline Basquo

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Re: I'm done
« Reply #23 on: May 23, 2014, 11:05:57 pm »
Love is the predominate emotion here!

Offline Lou-ah-vull

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Re: I'm done
« Reply #24 on: May 24, 2014, 04:18:24 am »
or as England Dan and John Ford Coley so aptly sung it in the 1980's "light of the world, shine on me, love is the answer."

To my AMG friends who haven't seen me post in several weeks, I am on day 13 of a 14 day Alaskan cruise (and this one had particularly poor internet.)  Alaska however is wonderful (my third time.) 

Gary
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD
01/15: 1366 (45.2%), UD
07/15: 1134 (50.7%), UD
02/16: 1043 (55.1%), UD
08/16:  746  (55.4%), UD
08/16:  Switch from Atripla to Genvoya

Offline eric48

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Re: I'm done
« Reply #25 on: May 24, 2014, 06:41:58 am »
Some here were nice but it seems more like cliques of people on this forum and I finished highschool along time ago.. Once your a little different, your ignored..

I really can't see what you are referring too ;-)

I have never seen anything wrong in being or thinking different

I like this one

Seek not the favor of the multitude; it is seldom got by honest and lawful means. But seek the testimony of few; and number not voices, but weigh them.
Immanuel Kant


the testimony of few is pretty much want I like in the forums. Yours is not ignored nor downrated. I value it a lot. I've read numerous of your posts, yet, not having experienced what you've had ... I learn from you more than you would from me.  ;-)

The only thing I could share it that, yes, waiting for UD can create anxiety... And I have waited one full year! 365 days and ... nights

Replication is very likely already suppressed and what you see are the remnants of what was going on before you started medication. Of course, you'll know for sure only once you're UD. But, I would bet a grand that you will

Eric Immanuel
« Last Edit: May 24, 2014, 06:48:46 am by eric48 »
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

 


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