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Author Topic: Needing info fast please  (Read 34563 times)

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Offline zach

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Re: Needing info fast please
« Reply #50 on: October 13, 2014, 01:16:51 pm »


two months of meds, ready for travel. i'm done with this thread, feelings really hurt. don't make nicey nice with me, call me your lifesaver just for telling you to take your meds. then turn around and tralala i'll be fine. whatever.

i counted out 308 pills this morning, just saying

Offline absopozilutely

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Re: Needing info fast please
« Reply #51 on: October 14, 2014, 10:20:16 am »
Wow you've built up quite the supply!!
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 wolfter

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Re: Needing info fast please
« Reply #52 on: October 14, 2014, 10:45:32 am »
How is that a 2 month supply?  :)  I take Intellence instead of Isentress but other than that, this is what I look forward to on a daily basis. 

And for clarification, I've never had a single person question what pills I'm taking in the 20+ years of taking my vitamins.  ;)  Even when I had to wake in the god awful middle of the night hours due to every 4 hour dosing.  Yeah, that's correct folks.  Back in my day, we had to walk up hill barefooted in the Winter in order to take meds EVERY 4 hours just to be sick and barely hang on.

I find it incredible that folk can't find time to "sneak" a pill a day in order to live.  nuff said as I don't need the hammer bamming me after a night of zin.
Being honest is not wronging others, continuing the dishonesty is.

Offline zach

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Re: Needing info fast please
« Reply #53 on: October 14, 2014, 01:49:26 pm »
How is that a 2 month supply?  :) 

4 bottles are full, blister unbroken, labels have script on them

4 weekly reminder strips, sorted and filled

less now, i've taken S/M/T...

meanwhile init, i dunno, probably chaise lounging on the forward deck sipping pina colada and eating lime grilled shrimp

she didn't know who bob marley is. seriously

Offline Jeff G

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Re: Needing info fast please
« Reply #54 on: October 14, 2014, 03:54:41 pm »

she didn't know who bob marley is. seriously

WUUUUUT ? . There aint no pill can fix that .
HIV 101 - Basics
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Offline mecch

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Re: Needing info fast please
« Reply #55 on: October 14, 2014, 04:44:53 pm »
she didn't know who bob marley is. seriously

My students don't know lots of "legends"...  But yeah.  Bob Marley!?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: Needing info fast please
« Reply #56 on: October 17, 2014, 01:51:16 pm »
5 days into the drug holiday - wonder how this is going....
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline zach

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Re: Needing info fast please
« Reply #57 on: October 17, 2014, 02:20:06 pm »
http://www.washingtonpost.com/news/morning-mix/wp/2014/10/17/cruise-ship-carrying-texas-ebola-nurse-refused-entry-in-belize/

turned out she was going to mexico, not jamaica... i dunno if this was the ship she was on... i'm not laughing, i'm not

i really hope she has a great time. maybe at the last second she reconsidered, took her meds. no issue.

otherwise, she's looking at greater than 30% adherence failure for the month between these two holidays
« Last Edit: October 17, 2014, 02:24:25 pm by zach »

Offline leatherman

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Re: Needing info fast please
« Reply #58 on: October 17, 2014, 03:04:27 pm »
5 days into the drug holiday - wonder how this is going....
interesting question

so the first few days after the meds, a patient's HIV could be more likely to mutate as the med levels are still present in their system but low (below a threshold, where the HIV could begin to become become resistant)

then there will be a few days, where there will be no meds in the patient's system, and any un-mutated HIV from a latent reservoir could spill over and be able to flourish.

that would be followed by the first few days back at home restarting meds, when once again the meds would be in the patient's system; but below the threshold for a unknown amount of time during which that "new" HIV viral load could mutate and become resistant.

if, as is quite possible, no resistance happens during this unfortunate incident, the meds would destroy the newer HIV and the patient would return to the level of UD

however, if resistance happens it probably won't be identified until the patient has another screening (ie "regular blood work", which would detect an increasing viral load instead of UD) or until the patient begins to experience illness (which hopefully would lead to a screening which would determine the increased viral load)
leatherman (aka mIkIE)

Offline mecch

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Re: Needing info fast please
« Reply #59 on: October 17, 2014, 07:05:44 pm »
so complicated....  i can't even....
 simpler in all cases to take the damn pills
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Joe K

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Re: Needing info fast please
« Reply #60 on: October 17, 2014, 07:22:48 pm »
I sometimes feel that there is a very thin line between support and pontificating.  While we all agree, that stopping your meds for a vacation is a very bad choice, it does not mean that the sky is falling.  The OP does run the risk of an adverse effect of her choice, but the foundation of this forum is founded on support and at times it seems that the support is in rather short supply.

That's why I initially responded in this thread, that I "respected" the decision the OP made.  It did not mean I accepted or agree with it, rather it meant I respect the OP to be able to make her own decisions and while I may not agree, I will always support her choice to choose what she does.

Trying to incite some type of fear into the OP, but even more so, to those who read these forums, yet remain silent, is that something bad will always happen when you don't do what everyone else thinks is what you should do.

For me, that's not support... it's condescension

Joe

Offline mecch

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Re: Needing info fast please
« Reply #61 on: October 17, 2014, 07:30:21 pm »
ok point taken.  my apologies :-\
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Joe K

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Re: Needing info fast please
« Reply #62 on: October 17, 2014, 08:16:54 pm »
ok point taken.  my apologies :-\

I did not quote anyone intentionally, because it was the "tone" of some of the responses that disappointed me.  It's why I said there was a thin line and sometimes I think it's easy to forget who the OP is and where they are at this point in their life when we reply.

It was not an admonishment, rather a reminder that we have to provide unconditional support to our members.  Otherwise, we run the risk of members being too afraid to come back and receive the support they deserve... and possibly when they need it most.

Joe

Offline eric48

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Re: Needing info fast please
« Reply #63 on: October 18, 2014, 04:37:50 am »
Shit happens...

But, not always...

What might happen is what Mikie has described a few posts ahead

How likely is this going to happen ?
Dr Benjamin Young, in his article named :
Unplanned antiretroviral treatment interruptions...
http://www.ncbi.nlm.nih.gov/pubmed/24581324

has attempted to put some numbers on 'likelyhoods' that a selectable mutation might occur

In the list of reference he gives, other authors have quantified the likelyhood for resuppression in the case that happens

There are many scenarios where interruption exceeds the casual missed pill...
Stolen luggage, Volcanos dust in air, airline disruptions, insurrance issues, ...
and in modern research of reservoir reduction we even now have experimental treatment interruption

Combined likelyhood (that of selectable mutation multiplied by that of non resuppression) depends on many factors
- type of meds (PIs are more favorable)
- patients history (multi-tratement, previous failure, VL at baseline, already UD  or not, etc.)
- nature of interruption (erractic, one time, VL monitered , ...)

With modern combos (vast majority of them having matching lifetimes), the max likelyhood in repeated interruptions is ca. 5%
(emphacize: repeated interruption). So for a one time interruption let's take a likelyhood of ca. 1%

Even if selectable mutation occurs, patients have been able to resuppress on the very same combo in ca. 70 % of cases.
(if not, a good second line should do it...)

Hence, the likelyhood that a single, unplanned, short term interruption might not be resuppressed on a otherwise successfull combo is not zero, but ...

We can speculate on what might happen for Init, we can speculate for what other readers might think, etc. etc. etc.

Bad things can happen... they can ...

Learn on what you expose yourself to, if you so wish...You don't want to play the sorcerer's apprentice

But, why not try to use established knowledge to put things in perspective
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline eric48

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Re: Needing info fast please
« Reply #64 on: October 18, 2014, 05:13:15 am »
^^^

The above is for people who are UD already. (Sorry I could not modify to make this clear)

Treatment interruptions before UD (or even better, before confirmed UD) sounds like calling for trouble to me. Needless to say
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline initforlife

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Re: Needing info fast please
« Reply #65 on: October 20, 2014, 12:18:45 am »
Thanks for all the judgment  here.I will adress that more later when im not on my phone.but right now i want to say I come here because there is so much i do not know and have block out of my mind because thats how i have learned to deal with being poz I ask questions at times that i want to know about in the end it is my choice right or wrong  time will tell how bad i messed up or not i will never judge anyone on here i will help with kind words hugs whatever is needed  yall dont have to be mean to make a point this is hard for me still yet .I hope yall understand where im coming from
sometimes it is best to say nothing at all. then to offend

Offline zach

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Re: Needing info fast please
« Reply #66 on: October 20, 2014, 12:37:33 am »
hope you can understand where we're coming from. let's play nice

Offline LiveWithIt

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Re: Needing info fast please
« Reply #67 on: October 20, 2014, 09:41:59 am »
There are no problems at all or restrictions.  There are small gay cruises as a group on a larger open to all cruise ship.   You are not bringing the pills into other countries, you are leaving them on the ship,   Even if you do have to take them with you because you take them at a specific time when you will be on an excursion you can. 
Pray God you can cope
I know you have a little life in you yet.
I know you have a lot of strength left.

Offline leatherman

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Re: Needing info fast please
« Reply #68 on: October 20, 2014, 11:04:57 am »
Thanks for all the judgment  here.
it was any "judgment" from me - just simple facts about a possible outcome.
An outcome that I myself have had to deal with. ;)

in years past, I took meds haphazardly several times (due to side effects of bouts of nausea for the most part, rather than stigma/discrimination) and my HIV mutated and developed resistance to several meds. In the last two decades, I have bounced from combo to combo of "salvage therapy", often barely hanging on, as meds improved over the years. So I am very cognizant of how simply ditching your meds for a few days at a time can lead to serious consequences. It wasn't any judgment on my part; it was just the harsh truth learned through sad personal experience.

My suggestion would be that after you get back to taking your daily meds for a while (without any further interruptions), that you call your doctor to have labs done in about a month or so - just to make sure. Hopefully this situation won't lead to any problems for you; but maybe the scare (or anger) about this thread will help you remember the importance of remaining adherent regardless of the social situations.
leatherman (aka mIkIE)

Offline Jeff G

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Re: Needing info fast please
« Reply #69 on: October 20, 2014, 11:07:28 am »
No judgement here . I was an still am concerned with your well being and that is why I posted .
HIV 101 - Basics
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You can read more about Transmission and Risks here:
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You can read more about PEP and PrEP here
PEP and PrEP

Offline Joe K

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Re: Needing info fast please
« Reply #70 on: October 20, 2014, 07:36:43 pm »
Initforlife,

I can appreciate some of your anger with some of the comments here, however, none of it was said with malice; only with concern.  All of us bring something different to this forum and for some it may be hard to forget some experiences that cost us so dearly.  Some of us have been poz for decades and we have lived as the science advances, and we promote what the science tells us in regards to various facets regarding HIV treatment.

We also were, at some point, where you are now and sometimes we might forget what that might be like for you.  When we disapprove of something, we are not judging the person, only the action.  Sometimes we come on a little too strong and I suggest you take that as a compliment, because if we didn't care about you, we would not be here supporting you.

All I can ask is that you consider, since we each bring our own experiences here, that sometimes the written word is limited in expressing full emotions.  Support must be a two-way exchange and I urge you to look for the intent of the posts, rather than the "tone" of the posts.

Joe 

Offline initforlife

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Re: Needing info fast please
« Reply #71 on: October 20, 2014, 07:51:21 pm »
I'm home and sitting here drinking some of that great rum I brought home with me.. Sorry I didn't mean to imply all were judging me. One Who I value a lot was one but as he explain to me true friends tell it like it is good or bad because they care.. I understand that.. Yes I ditch the meds and feel great. yes I have issue with being poz that I really need to address. I hate being poz I hate taking meds that make me spend more time on the damn toilet then spending time having fun on a beach somewhere. I was told by my friends I had to keep all meds in the bottles they came in so the vitamin switch never occurred to me. I was very scared of being found out. and like after the very bad aids joke it freaked me out more... I know I have  issue's I haven't dealt with before. I never travel with hiv before I didn't know the rules . why I came here to ask. it was a last min invite  I had just got back from one vacation and loaded up the next day for another so really no time to plan or find out what I needed to know.. Did I make a wrong choice.  Time will tell I have tons of questions and will talk with someone later this week and hope he can help me.. My dr has ask me to talk to someone but I refused because they are not trained in  hiv so to me what is the point? Sorry so long just love this rum and trying to explain a little of my fears. which are very real to me. Yall are my only outlet and only people I ever talk about hiv to other then one of my girls who doesn't know what to tell me either. anyway that's all for now . and thanks for all who have tried to help me understand I can't just ditch meds. 
sometimes it is best to say nothing at all. then to offend

Offline mecch

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Re: Needing info fast please
« Reply #72 on: October 20, 2014, 09:51:35 pm »
My dr has ask me to talk to someone but I refused because they are not trained in  hiv so to me what is the point?
Talk to who? Psychologist? Therapist? Social Worker?
Have you ever done that? A trained mental health person does NOT need to live your concerns to help you deal with your concerns. My shrink is younger, a woman, and heterosexual and doesn't have HIV - so what. Its her job to help me with whatever I take to her.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline initforlife

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Re: Needing info fast please
« Reply #73 on: October 21, 2014, 08:12:55 am »
She wanted me to see a Psychologist. Ok I have a question  what if you stop your meds altogether instead of just stopping and starting  . say your cd4 count is excellent, would your cd4 count go down faster since you have already been on meds for several months or can you go on for a few years and be ok?  No judging here please Im asking a question I really want to know...
sometimes it is best to say nothing at all. then to offend

Offline zach

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Re: Needing info fast please
« Reply #74 on: October 21, 2014, 08:46:59 am »
before i play ball. reading between the lines, you haven't taken a dose of meds since you've been home have you? lets be transparent about that

a harsh perspective here, and damn right a little judgement,

you are refusing a mental health care referral

and you have gone on a two week (at least right?) drug holiday and now are toying with the idea of stopping altogether?

this timeline you want mapped out, to what end? sooner or later, you get sick, that part sucks hardcore. so what is the rationale here? are you hoping for better meds? or a massive shift in perception so you don't have to be ashamed for having that dirty gay drug addict disease?

i really don't understand what you're asking, much less why. how fast are you going to get sick?!?

you'll have ten years, tops. then it's a crap shoot, every cold cuts you down a little more each time. less and less energy, slowly at first. whatever OI you happen to pick up, probably some fungi and bacteria. then, pneumonia. there's other things too, stuff you never bargain for.

whenever that tipping point is, hard to say. but when it happens, the descent builds momentum. then you'll start getting truly sick. maybe something you never quite recover from.

it's not going to go away. you need to stop running, turn around, and face this. hiv cannot be ignored. you can't keep compounding this mistake. you did what you did, so be it, odds are no harm done. let it go, move forward. are you going to take care of yourself or not?
« Last Edit: October 21, 2014, 08:57:38 am by zach »

Offline initforlife

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Re: Needing info fast please
« Reply #75 on: October 21, 2014, 08:59:57 am »
No I haven't restarted my meds yet. idk what my plan is right now That's why I'm asking  and no not talking to my dr about this. I brought it here because I was asked to by someone...
sometimes it is best to say nothing at all. then to offend

Offline eric48

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Re: Needing info fast please
« Reply #76 on: October 21, 2014, 09:17:14 am »
what if you stop your meds altogether instead of just stopping and starting
Allow me to go into the technicalities

When you stop, the virus picks up and you loose undetectability in typically 7 days. The average is actually 13 d. +/- 3 days ... So , say your virus has picked up somewhat already.

Then Within ca. 1 month, it goes back to your pre-treatment levels (most times actually less...)

For people who have had LOW CD4 at least one (AIDS or low Nadir) : they get back to these (low) numbers in about 1 month
For others, Higher CD4 at baseline, they also go back to (higher) pretreatment CD4 value , but it takes longer

Your case looks like the one addressed by Dr B. Young here
www.tinyurl.com/HPC-YOUNG

Here Dr Young cuts all BS:
While HIV care is lifelong, HIV treatments are for the long run- this doesn't necessarily imply that you can never stop, or never miss a dose.

I do not take this out of context since:
- his statement is general
- your own context is not that different than the question he answers

So basically, when you stop you get back to square 1 ... Then the numbers follow their natural course.

In your case  VL 7000 CD4 850, if my memory is correct ...

And at   VL 7000 CD4 850, the odds that you will require treatment (namely your CD4 falls below 350) before 3 years is ... 0

I believe the current recommendation to initiate treatment at levels even exceeding 500 also come with the recommendation 'and when the patient is ready'

It is beneficial that you have been diagnosed early

with your pre treatment VL, you can afford to differ treatment... At least until you have collected your thoughts

In modern days, People who have been diagnosed early and retain into care, especially with  your numbers are at no risk of AIDS
You have the virus, you monitor it, every 3 months and you will enjoy the situation that is described in Dr Young's question

You can re initiate treatment also... This would not be a bad idea: if you do you are sure that you will not pass the virus: that alone is a great benefit

A one time interruption puts you at NO risk of resistance.

But haphazardly , erratically taking pills On OFF randomly, yes, that is calling for trouble.

Which ever route you choose, we will be there to support you.
This forum is good at supporting people who have a hard time with their treatments
It is equally good at supporting those who prefer to differ
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline wolfter

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Re: Needing info fast please
« Reply #77 on: October 21, 2014, 09:24:08 am »
I sincerely hope you will discuss this with your doctor.  Trust me, I TOTALLY understand the emotional turmoil and I want you to avoid the pitfalls and disasters that may result.

What you view as judging, others see as genuine concern.  And yes, we can judge actions without it being an indictment of you personally.  Be grateful that enough people care to try and help.

I know firsthand what may happen when the decision to stop meds is made.  I purposely used this profile picture as it reminds me of how sick I got the last time I made that idiotic decision.  Little did I know that a few weeks after this pic was taken that I would be admitted to the hospital once again, suffering blindness, deafness and a brain so swollen that it required a stint to release pressure. 

take care and best wishes
wolfie
Being honest is not wronging others, continuing the dishonesty is.

Offline mecch

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Re: Needing info fast please
« Reply #78 on: October 21, 2014, 11:10:08 am »
She wanted me to see a Psychologist.

Please go see the Psychologist and lay it all on the line.

You aren't seeing things in a practical manner.  Its pretty simple - what needs to be done. (Obviously not psychologically easy for you, however.)  Once an HIV+ person starts treatment, he/she stays on it. Only doctors might guide a treatment interruption for certain very specific purposes.

HIV treatment is pretty tolerable. In some instances, people experience no noticeable side effects for years.

Untreated HIV is a horrorshow that ends terribly for everyone, the person with it, and loved ones and friends around. 

Everything about what is happening with you now is emotionally and psychologically driven.  That is why its appropriate and necessary to go see a mental health practitioner. 

Whats it going to cost you to at least talk your situation through with a psychologist? What do you have to lose?

« Last Edit: October 21, 2014, 11:12:44 am by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline initforlife

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Re: Needing info fast please
« Reply #79 on: October 21, 2014, 10:04:18 pm »
http://www.washingtonpost.com/news/morning-mix/wp/2014/10/17/cruise-ship-carrying-texas-ebola-nurse-refused-entry-in-belize/

turned out she was going to mexico, not jamaica... i dunno if this was the ship she was on... i'm not laughing, i'm not

i really hope she has a great time. maybe at the last second she reconsidered, took her meds. no issue.

otherwise, she's looking at greater than 30% adherence failure for the month between these two holidays
This made me laugh kind of. I was in belize but not on that ship . however the news hit our little town and before we got home me and my friends who went with me were getting calls asking if we knew we will have ebola now.. I so wanted so say nope I don't have that but I do have hiv. but didn't I so wish I didn't have to hide things that just eats away at my soul as I have always been a honest open person to everyone.  Oh well !
sometimes it is best to say nothing at all. then to offend

Offline bocker3

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Re: Needing info fast please
« Reply #80 on: October 21, 2014, 10:41:54 pm »
This made me laugh kind of. I was in belize but not on that ship . however the news hit our little town and before we got home me and my friends who went with me were getting calls asking if we knew we will have ebola now.. I so wanted so say nope I don't have that but I do have hiv. but didn't I so wish I didn't have to hide things that just eats away at my soul as I have always been a honest open person to everyone.  Oh well !

The first step is to stop hiding this from yourself -- you are not truly facing up to your new reality.  YOU ARE HIV+ and this will not change no matter how much you try to ignore it.  I'm not judging -- you are not the first to go this route.  What I am seeing here is that whenever someone tells you something that you don't want to hear, you have a defensive reaction.  "he wants me to talk to someone"  response:  NO - they are not trained in HIV.  "Please don't stop your meds -- or restart them now, pleaese"  response:  thanks for the judgment.  Now you are asking how long can you go with meds -- the easy answer -- until you die.

Coming to grips with your status is hard, I won't deny it, but avoiding it isn't going to help.  It seems, from where I sit, that the meds are that symbol of HIV to you that you simply can't shake, so you want to avoid it.
Many have tried that -- the fortunate just got very sick -- many waited too long to try and restart.

Please go talk to someone -- you don't have to face this alone.  We are all here to support you, but you need someone to help you work this out -- a professional.  I hope you do, you deserve to have a real life -- hiding from your reality is not a real life.

Hugs,
Mike

Offline initforlife

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Re: Needing info fast please
« Reply #81 on: October 21, 2014, 10:57:52 pm »
The first step is to stop hiding this from yourself -- you are not truly facing up to your new reality.  YOU ARE HIV+ and this will not change no matter how much you try to ignore it.  I'm not judging -- you are not the first to go this route.  What I am seeing here is that whenever someone tells you something that you don't want to hear, you have a defensive reaction.  "he wants me to talk to someone"  response:  NO - they are not trained in HIV.  "Please don't stop your meds -- or restart them now, pleaese"  response:  thanks for the judgment.  Now you are asking how long can you go with meds -- the easy answer -- until you die.

Coming to grips with your status is hard, I won't deny it, but avoiding it isn't going to help.  It seems, from where I sit, that the meds are that symbol of HIV to you that you simply can't shake, so you want to avoid it.
Many have tried that -- the fortunate just got very sick -- many waited too long to try and restart.

Please go talk to someone -- you don't have to face this alone.  We are all here to support you, but you need someone to help you work this out -- a professional.  I hope you do, you deserve to have a real life -- hiding from your reality is not a real life.

Hugs,
Mike
  All this is true!
sometimes it is best to say nothing at all. then to offend

Offline stuka

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Re: Needing info fast please
« Reply #82 on: October 22, 2014, 02:07:37 am »
init, what exactly are the side effects  you're getting from your meds? i remember you started with complera but then moved on to another combo. are the side effects mostly physical this time or is it affecting your mental condition as well?

Offline absopozilutely

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Re: Needing info fast please
« Reply #83 on: October 22, 2014, 05:26:31 am »
init, what exactly are the side effects  you're getting from your meds? i remember you started with complera but then moved on to another combo. are the side effects mostly physical this time or is it affecting your mental condition as well?
Stuka, I know you being new to this, newer then myself, may be scared of side effects but really you'll be fine as well. And so will init when she starts her meds again, no judging, and don't let this thread scare you. Just always remember the small side effects you MIGHT get are far easier to handle then not taking meds.

Always,

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 JustSmile01

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Re: Needing info fast please
« Reply #84 on: October 22, 2014, 06:56:42 am »
Initforlife--first, we ask, probe and prod because we care--obviously. We are here to provide support, not judgement and to ensure you're on the right track. Yeah some people adjust to meds differently with regards to both side effects and actual adherence. The minor effects you occasionally experience is far better than crashing your immune system and have to rebuild from scratch. Don't let your thoughts spiral your treatment out of control. You are much much better than that and living with HIV has is difficulties but being proactive and following a treatment routine will not only keep you healthy but restore your life back to normal.

Offline initforlife

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Re: Needing info fast please
« Reply #85 on: October 22, 2014, 08:34:12 am »
init, what exactly are the side effects  you're getting from your meds? i remember you started with complera but then moved on to another combo. are the side effects mostly physical this time or is it affecting your mental condition as well?
I don't really have any side effects from the meds other the the shits. which is bad when you are on vacation with other friends and you share a room. It's just me I have issues and I seem to be looking for any excuse to get rid of my meds and get rid of having to deal with anything hiv. I'm sorry for anyone who thinks this is a right thing to do it is not. I just can't deal with it and have a real fear of being found out. why? Idk I come here to get answers and to try and help me because I won't talk to anyone who doesn't have hiv about this. it seems pointless to me . I really don't wana die I just don't know how to live with being poz.  I know some understand this
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Offline mecch

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Re: Needing info fast please
« Reply #86 on: October 22, 2014, 09:23:41 am »
I don't really have any side effects from the meds other the the shits. which is bad when you are on vacation with other friends and you share a room. It's just me I have issues and I seem to be looking for any excuse to get rid of my meds and get rid of having to deal with anything hiv. I'm sorry for anyone who thinks this is a right thing to do it is not. I just can't deal with it and have a real fear of being found out. why? Idk I come here to get answers and to try and help me because I won't talk to anyone who doesn't have hiv about this. it seems pointless to me . I really don't wana die I just don't know how to live with being poz.  I know some understand this

For the shits, you can ask your GP or the doctor who treats HIV for some remedies.

Not wanting to deal with anything HIV makes sense if someone is in denial. Actually you could do a better job of denial - you could quit this forum, stop going to the HIV doc, never go on treatment and bury the reality.  Plenty of people have done that and it works until the person gets very sick...

In fact you are only half committed to denial because basically you know eventually you do have to accept the new reality that you have HIV and deal with it too. 

Since you don't want to go to a therapist you might as well start poking around the "Why? Idk" with us.  Please don't get upset if people say something that seems judgy, its usually coming from the heart and just said awkwardly.  Nobody here as far as I know is trained as a therapist. Maybe 1 or 2 members. I know we have some social workers and some people in health care.

Why don't you discuss your fears of being found out.  Again, its a common experience.  Why don't you talk about what it means to you personally and in your situation...

Who can know, who can't. Why they can't know, etc.

What are the fears - what will happen if this person knows or that person knows? 

Please put your mind to it and try to tell us some of the details. 

People here will be quick to tell you our experiences but when it comes down to it, better you tell us your experience so we can listen.

Im sure some of your ambivalence and fear of disclosure makes perfect sense.  But also its not very practical from a health perspective.  Also, living in complete isolation will probably hurt you socially and in love.  But again, difficult to know, because we don't know much about your life.

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

Offline stuka

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Re: Needing info fast please
« Reply #87 on: October 22, 2014, 11:06:27 am »
init, I know a kid in my family who is only 11 and takes medicine for diabetes every day. His long term prognosis is probably worse than many of us. But he is a fighter and you won't see getting down because of this. Now you can bring up the stigma discussion but that's not the point.

Look at it this way, your immune system is as good as a non-HIV person. Its just that you have to take a pill every day to keep it that way. With modern meds, its not any different from taking meds for your heart, diabetes, psoriasis, or any number of conditions. We all have to die one day. I might not be here next week, but I am sure as hell that I am not going to die from AIDS. That would be a horrible, horrible way to turn the lights off.

Please stay strong and try to convince yourself that taking a break is not an option.

Offline drewm

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Re: Needing info fast please
« Reply #88 on: October 22, 2014, 11:43:50 am »
First, girls (and guys) can we please stop bickering regarding our own genius, personalities and who said this and that. The point is that the OP needs to take her meds. period. Stopping, ditching them is not an option. If you are having trouble living with being poz, get yourself some counseling or better yet, ask some of the queens on here about life as a pozzie and pop some corn for the resulting conversation.
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 Miss Philicia

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Re: Needing info fast please
« Reply #89 on: October 22, 2014, 12:55:35 pm »
So I have read this thread twice and maybe I am wrong but it seems that the OP was more afraid that her friends would find out she had HIV medications with her than "the authorities" would find out -- as obviously she was quite clearly told the authorities were not concerned with her medications for HIV either stateside or in Jamaica. Especially on a cruise because you do not enter (generally) any country carrying your luggage containing your medications, they remain on the cruise ship. There was no reason to worry about your friends seeing your HIV medications in your luggage when going through check-in at the cruise ship counters. Did they inspect your luggage and make you open all of your luggage in the process? Even if you had such worries you could have eliminated them by getting in separate lines from your friends, just in case.

Now, one would think one would have made such considerations well in advance of booking/paying for a cruise and indeed even making the decision to take the trip. So is it possible to have a discussion about this? I assume you have returned from your trip, but your posts are a bit short in length so it's difficult to tell what is going on with you. You mentioned something about someone wanting you to see a psychologist? Who wants this and for what reason exactly and why are you resisting exactly?

Also, this decision to simply go BACK on your medications after halting for "x" amount of days and NOT inform your HIV doctor is simply not an acceptable course of action for a patient to take. Does you doctor not deserve a respectful doctor-patient relationship? You expect one from him do you not? Tell him what you did. That way if there are odd results on your next blood tests he will know why. And if there are not, well then no harm done. But at least the doctor will know that he has a patient that he can trust to fully inform him of things that have happened. You need to learn to have a bit of backbone in life and in your medical course of treatment.

And for the rest of you here that are "OMG CLUTCH THE PEARLS SHE STOPPED HER MEDS!" please give it a rest. Unless this person is on her last available regimen or maybe her next to last one there's really not room for alarm. There are so many HIV regimens available to patients these days if you develop resistance issues from halting something it may not cause it to develop to all of them in the regimen you were taking, and not cross-class resistance, etc. Some of you act like it seemingly eliminates 95% of one's options for future medications or something and you're going to be shopping for a coffin next month after a few weeks of peeling of KS lesions.

Now, if she began her diagnosis with a tricky resistance profile then yes I would say it was a very unwise decision to make. However I'm not aware of that information.
« Last Edit: October 22, 2014, 01:03:41 pm by Miss Philicia »
"I’ve slept with enough men to know that I’m not gay"

Offline Joe K

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Re: Needing info fast please
« Reply #90 on: October 22, 2014, 01:34:37 pm »
Idk I come here to get answers and to try and help me because I won't talk to anyone who doesn't have hiv about this. it seems pointless to me . I really don't wana die I just don't know how to live with being poz.  I know some understand this

I'm not sure where to start with your last post.  Exactly what do you expect from us, when you refuse to consider any suggestions to get some help?  We have all been where you are and it can be a dark and frightening place.  We get that part and it takes time to adjust and it's harder for some folks than others, however, at some point, you must begin that adjustment.  A great place to start is to see a professional, who can help you sort through your emotions and thoughts and work with you to start adjusting to being poz.

You cannot ignore your infection and expect to live with HIV, because without the medication, you will most probably become very ill and you may very well die.  This is the reality of being poz.  Treatment today is the most advanced we ever had and if you have side effects, there are ways to treat those, so they do not have to affect your quality of life.  But if you refuse to medicate yourself, you are throwing all these options away.

You don't need us to tell you what you need to do, you need to convince yourself.  Nothing we say can motivate you to take your HIV meds, especially if you don't feel that your life is worth living.  Saying that you don't know how to live being poz is a pretty weak excuse.  The reason you don't know how, is that you are not making any effort to adjust.

I empathize with where you are in your life, however, I cannot fix your life for you, nor can anyone else.  There are resources that will help you to adjust to being poz and adjusting will be a lot of hard work.  That's simply the way it happens when anyone contracts a possibly life-threatening illness.  You have to make a decision on whether your life is worth fighting for and if so, you need to take a first step, any step.  When you are able to take that first step, the next one will be that much easier, but only if you are committed to learning how to live with being poz, instead of running away from yourself.

Joe
« Last Edit: October 22, 2014, 01:46:00 pm by Joe K »

Offline Jeff G

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Re: Needing info fast please
« Reply #91 on: October 22, 2014, 01:43:29 pm »
I have taken the time as others have to talk to Init and I am convinced she is stuck in a hard place right now and honestly cant seem to shake it off or make a move to make it better .

I am happy she is using the forum to talk about this part of her life and I commend her for her honesty and willingness to share it with us .
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Offline Almost2late

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Re: Needing info fast please
« Reply #92 on: October 22, 2014, 05:40:37 pm »
Hi Init, Just want to let you know I'm here for you.. but I do hope you take your meds, please! :-[

No, she was being a patronizing little snark.
Moderators: Is it okay to insult members on the forum?.. Or is it a special privilege for a few?

Offline Jeff G

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Re: Needing info fast please
« Reply #93 on: October 22, 2014, 05:55:59 pm »
Hi Init, Just want to let you know I'm here for you.. but I do hope you take your meds, please! :-[
Moderators: Is it okay to insult members on the forum?.. Or is it a special privilege for a few?

What makes you think that something that happened 10 days ago was not  addressed ... because it was . I spoke to all involved and it was handled without allot a fanfare . You are a little late to the party .
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Offline Almost2late

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Re: Needing info fast please
« Reply #94 on: October 22, 2014, 06:01:46 pm »
Yeah, I know :-[.. sorry jeff, it's just that init is always nice to everyone and she doesn't deserve that.

Offline Jeff G

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Re: Needing info fast please
« Reply #95 on: October 22, 2014, 06:03:56 pm »
Its OK ... no harm done .
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Offline Dachshund

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Re: Needing info fast please
« Reply #96 on: October 22, 2014, 06:21:19 pm »
Hi Init, Just want to let you know I'm here for you.. but I do hope you take your meds, please! :-[
Moderators: Is it okay to insult members on the forum?.. Or is it a special privilege for a few?

You will be happy to know I was properly chastised by a moderator. It was awful. I was so upset I have stopped taking my meds. Woe is me.

Offline Almost2late

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Re: Needing info fast please
« Reply #97 on: October 22, 2014, 06:26:52 pm »
Asshole!

Offline Joe K

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Re: Needing info fast please
« Reply #98 on: October 22, 2014, 06:32:42 pm »
Yeah, I know :-[.. sorry jeff, it's just that init is always nice to everyone and she doesn't deserve that.

Do you realize that the comment was not directed at the OP?  It was directed to another member.

Joe

Offline Jeff G

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Re: Needing info fast please
« Reply #99 on: October 22, 2014, 06:33:27 pm »
Asshole!

And this is how we get a 7 day time out .
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