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Author Topic: What is the biggest personal challenge you face regarding your hiv status?  (Read 39618 times)

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Online leatherman

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #150 on: September 08, 2014, 09:36:48 AM »
The person that I am currently dating, I feel as if I have totally shut him out of my life; not wanting him to touch me at all. He doesn't deserve it at all.
I would hope that you could work you way past this issue. Didn't you say that your BF is also HIV+? If y'all are both on medications and UD, there is no chance in hell of any cross-infection or anything. People living with HIV often serosort (hook up with those of the same status) to avoid a lot of "bad feelings" and anxiety. If your BF has already been poz a while, he is probably the best person in the world to understand you and the issues you are going through. It would be a shame to throw away a good guy that could help you.

Last, if I should continue to try and hunt down the person that infected me. I have been trying to inform him for almost eight months, but have been unsuccessful, as he has been rescheduling over and over again.
Nope. stop trying right now. The past is the past and that guy's health is his concern. You should simply send him a note saying that he needs to get checked for any STDs and HIV, and leave it there. BTW have you been contacted by your state's health dpt? Most states do anonymous partner notification. (when someone tests poz, this data is given to the state. the state health dpt contacts you to make sure you understand the issues surrounding being HIV positive. they ask for a list of possible sexual contacts you might have had. they then follow up with those people suggesting they should get tested.) There really isn't any reason for you to continue to track down this guy when the state will do it anonymously for you.
leatherman (aka mIkIE)


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

Offline Kmg1947

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #151 on: September 11, 2014, 10:50:45 AM »
My son says his biggest challenge is just the stigma. He is in fear of people knowing. He has had to change Doctors because of it. Some places like clinics are not confidential at all they just throw around the most personal sensitive information like it is nothing, as they are not living with this. He explains that to me often. He said people comment on his weight as he is small, so he feels like they are looking for something. He is trying his best to move out of this state and go somewhere else and not be known. I respect that! I told him no matter what I am standing here for him and will see him where ever he is at, as well as continue to being the support he needs.

One day at a time.
Kay
Loving Life through the Ups & Downs.

K

Offline drewm

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #152 on: September 11, 2014, 11:40:25 AM »
My son says his biggest challenge is just the stigma. He is in fear of people knowing. He has had to change Doctors because of it. Some places like clinics are not confidential at all they just throw around the most personal sensitive information like it is nothing, as they are not living with this. He explains that to me often. He said people comment on his weight as he is small, so he feels like they are looking for something. He is trying his best to move out of this state and go somewhere else and not be known. I respect that! I told him no matter what I am standing here for him and will see him where ever he is at, as well as continue to being the support he needs.

One day at a time.
Kay

Thanks for being his rock, Kay. My mom is still my rock. Sorry about the confidentiality issues. That is something that should definitely be addressed with his doctor / management of the clinic.
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 Kmg1947

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #153 on: September 11, 2014, 01:23:35 PM »
Thank you so much for your encouragement.

Kay
Loving Life through the Ups & Downs.

K

Online bubba53

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #154 on: September 11, 2014, 08:48:52 PM »
 Mine is fatigue,no doubt  , sometimes I'm fine , but I defiantly tire more easily & takes a long time to get moving in the mornings , & the lipo of course , but I learned that's part of who I am now.  Fix the things I can & the rest Well.................
"Who put the pepper in the....Vaseline  ? " Coffee Butler

Online zach

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #155 on: September 11, 2014, 09:46:03 PM »
lonely, worn out
An honest tune with a lingering lead has taken me this far

Offline JosephP

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #156 on: September 17, 2014, 10:41:23 PM »
l
but what really killed me, my youngest son sat in class and listened to kids making fun of hiv/aids.... I've never in my life felt so ashamed as when he cried telling me that story

That really hurts... Sorry!
We are all dealing with this. And we will live long and productive lives!!

Offline JosephP

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #157 on: September 17, 2014, 11:01:46 PM »
Biggest? also most difficult... Keep mum about it! It has been 12 months since my shocking dx and still some times I get jolted by the tought that I am HIV+... No bitterness, I should have taken precautions but stupidity, the passion of the moment and ignorance have me here today. My ID doctor is great and she gave me hope since the first moment...My primary doctor is also very supportive. I feel great and take that blue pill day after day. I have become a slave of it and panic if I leave my house without my daily dose....
Reading all the posts here help a great deal. I can identify with so many of us that are going thru the same and gives me the courage to continue with life. I have stopped being sexually active, but I am approaching a moment with a girl friend of mine as our relationship has advanced and sex, or the thought of it, is inevitable...What I am going to do? I have not the faintest.. That is my biggest challenge... Also, there are some changes going on at work...Will I have to disclose? Additionally, I have three kids, adults now but nonetheless my kids... How will they react? How did you let this happen at your age, dad? is the question that pops on my head constantly. I have been reading these posts for a year now and love the compassion and understanding. It eases the pain somewhat knowing that I am not alone in the world...Dumb? no...Realist. I know my time to disclose might be getting closer and that does scare me!
One thing HIV has done for me is that I have became closer to God. I do pray. I do hope. I wish for  Him to pass his healing hands over me and rid me of it..
Keep up the good work and let's help each other...
We are all dealing with this. And we will live long and productive lives!!

Offline atxpozguy

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #158 on: October 01, 2014, 01:47:11 PM »
Mine is quality of life as it has taken a nose dive and the outlook does not look good after being diagnosed with cancer that is untreatable, the 40+ meds I must take to address organ damage caused by years of toxic cocktails, body weight is big concern now as I lost 40lbs with the last 30 days, muscle mass down to 37%, chronic diarrhea,  constant trips via EMS to the hospital, a primary care doc that is ruthless, zero support from local ASO, chronic neuropathy pain and early onset Alzheimer.

I am basically tired of all these health problems, tired of taking of taking all of this medication, have no appetite and not being able to see Dr Death for 3 months at a time..

This is what living with HIV/AIDS virus for 30 years does to us LTS...
30 years poz with no expiration date

atxlovingqueer@gay.com
atxniceguy@gmail.com

Diagnosed HIV 1983
Diagnosed AIDS 2001

As of Jan 17, 2012: VL <20k CD4 183  28.5%

Offline JRRRRRR

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #159 on: October 13, 2014, 06:57:00 PM »
Treatment adherence. It's an enormous effort for Matty the Damned. Not the night-time dose, but remembering to take the morning dose.

Bugger. Which is what I've gotta do know. Ah, shit! Or did I already take the fucking thing?

MtD
(Who can never remember)

PillBoxie app!!!  Put it on Nag Mode!
03/15/14 Flu-like symptoms (seroconversion)
05/06/14 Tested Positive  VL 36,000
06/02/14 CD4 231  (14%)  VL 29,000
06/09/14 Started Stribild
07/02/14 VL 20
09/03/14 CD4 321  (24%)  VL undetectable
10/15/14 CD4 488  (30.5%)

Offline mitch777

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #160 on: October 13, 2014, 08:46:39 PM »
Mine is quality of life as it has taken a nose dive and the outlook does not look good after being diagnosed with cancer that is untreatable, the 40+ meds I must take to address organ damage caused by years of toxic cocktails, body weight is big concern now as I lost 40lbs with the last 30 days, muscle mass down to 37%, chronic diarrhea,  constant trips via EMS to the hospital, a primary care doc that is ruthless, zero support from local ASO, chronic neuropathy pain and early onset Alzheimer.

I am basically tired of all these health problems, tired of taking of taking all of this medication, have no appetite and not being able to see Dr Death for 3 months at a time..

This is what living with HIV/AIDS virus for 30 years does to us LTS...



At,

I am a bit dismayed that I missed this post.

While I have just had my own 32nd year being hiv+ as I speak I have not faced what you have. I DO however have great admiration for the strength you have had and without knowing if your condition is treatable or not or I would have two different replies maybe.

I'm glad in either case that you told us your story. I really would love to give you a hug right now.

m.

32 years hiv+ (oct. 2013) with a curtsy.

Online DANIELtakashi

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #161 on: December 05, 2014, 01:34:36 AM »
How long i can live is a question that drives me nuts now.
Here in Japan, there is an image of this disease as only a killer.
Japanese National.
Language:  Japanese and English
Reside in TOKYO
Have visited 45 US states, DC, and Guam and Saipan.

Offline DiabloII

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #162 on: December 10, 2014, 09:28:16 PM »
I have had many challenges since being diagnosed 6-6-12 with HIV/AIDS.  My first challenge was accepting what I believed to be a death sentence.  I went into a deep depression made worse by extreme fear and the absence of having someone there to support me.  On more than one occasion, I thought of suicide as the answer.  However, I was taking care of my mother and knew suicide would destroy her.  I bucked up and eventually started meds.  My first encounter with meds almost took care of the suicide issue when a violent reaction landed me in ICU for 3 days.  Although I did not tell my family of my diagnosis, a former partner and good friend come to the conclusion I was poz.  I was horrified that someone now knew my dark secret!  He, being in the medical field, encouraged me to stay strong and continue with getting on meds.  However, he admonished me "NOT" to share my status with anyone!  After many trials with meds, my ID doc finally found meds I was not allergic or immune to.  The down side, the list was short!  As I went on the meds, my health started improving.  However, my mental health continued to become worse!  Eventually, I landed in therapy and began taking antidepressants.  As time went by, I started getting better and back on track.  Thank GOD for work!  It kept me occupied where I didn't dwell as much on my health.  11 months after my diagnosis, my younger brother found my meds and began asking questions.  He eventually determined I was poz and outed me to my mother which almost killed her soul!  Knowing that she knew only emphasized why I wanted to keep it a secret.  Not because of rejection, but because of the hurt and worry I saw on her face almost daily as she herself struggled with end of life issues.  On her last day with me, she begged me to do whatever it takes to beat this disease and not give up!  After she passed, I was once again thrown into a deep depression.  This time is has become much worse.  Now I seem to feel I have no more self-worth.  I have withdrawn from friends and family and basically get up every day, go to work, get off and go to bed.  I have since somewhat overcome the depression but still find it difficult to get out and do normal things.  My biggest fear is being alone the rest of my life!  Prior to my diagnosis, I was outgoing, had friends, had relationships and was extremely sexually active.  Now, not so much in any of those categories.  I still refuse to come out of the pill box about my status and I fear daily, someone will find out and out me to others.  There are days I wish I would tell everyone and let it be what it is going to be, but I'm afraid!  I want a love life!  A life partner!  Someone to share the good times and the bad times with!  I would say I want to be normal again but, I don't remember what normal is!  Recently, my ID doc informed me that my meds were not as effective as he had hoped they would be.  Although my CD4 has significantly improved and I have had labs return where by VL was UD, my latest VL's are slowly increasing.  My ID doc changed me to 4 new meds.  I'm lucky in that my insurance covers the cost of the meds.  However, with the new meds, my deduct has sky rocketed and it is putting me deeper in a financial crisis.  Additionally, these new meds have caused me to experience significant fatigue and GI issues.  They have also caused me to gain a significant amount of weight!  All this is really causing me to ask once again, why continue when I know what to look forward to!  Will things ever even out where I can enjoy life and companionship once again?  I'm not asking for normal or anything vastly great.  Just something that will bring some happiness once again into my life!  AM I BEING SELFISH FOR WANTING THIS?

Offline moka1970

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #163 on: January 16, 2015, 07:14:37 PM »
My biggest challenge/fear is when I meet someone how/when will I tell them that I am positive and when the person finds out will they reject me.
Also..when do I tell my son that I am positive? I've been positive for about 22 years. My son is 10. He's negative (Thank God!)
Sometimes I am concerned that my ex-husband will tell our son out of spite.  My ex-husband is also negative.

Offline mecch

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  • red pill? or blue pill?
Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #164 on: January 16, 2015, 07:42:53 PM »
My biggest challenge/fear is when I meet someone how/when will I tell them that I am positive and when the person finds out will they reject me.
Also..when do I tell my son that I am positive? I've been positive for about 22 years. My son is 10. He's negative (Thank God!)
Sometimes I am concerned that my ex-husband will tell our son out of spite.  My ex-husband is also negative.
How long have you been single? Haven't had to disclose yet to a romantic interest?
If your husband tells your son before you are ready to tell him yourself, you would be best to be ready with a firm and calm response. People can react based on how OK and calm we our ourselves.  If you keep any fear or shame about being HIV+ and show it, your son, or anyone, like a potential romantic interest, will react based on that, as much as the HIV status itself.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline chemeng83

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #165 on: January 19, 2015, 11:45:52 PM »
Hey everyone.  I just found this community and thought I'd let out my story.  Was diagnosed in 2012 after randomly going in for a screening.  I told my girlfriend at the time 3 weeks later.  Man, that was the hardest thing I've ever had to do.  However, I kind of suspected she was pos and didn't know because she was the only one I'd had sex with in a year and I knew my status before I started with her was neg.  Anyways, turns out she was pos as well.  Anyways, we got married and have settled down.  I can honestly say that I'm not 100% sure if we would've got married without hiv.  In some twisted way, it's a common struggle that we both face.  In regard to the medication, I don't view it as a burden...this is the stuff that is saving our lives!  I also don't worry about what could happen.  Sure, I have fears like everyone else (negs have most of the same ones) but how I will die is not one of them.  Whether car accident heart attack, or cancer, its going to happen to us all.  I've found it to be frutile to analyze it further who has added a single second to their lives from worrying?

What I have found is anxiety over disclosure.  That's the real effect of hiv.

Offline Carolinaonmymind

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Biggest challenge is probably the fatigue
« Reply #166 on: February 03, 2015, 07:22:49 AM »
I have always been a fairly active person, but a year into the meds I am finding my energy levels zapped at the end of the day. I have gained alot of weight (which has been a roller coaster since my diagnosis). I have to get myself back into an active routine but just don't have it in me most days. I am hesitant to take any type of supplements to help with this because I am unsure of any possible drug interaction with Atripla.

The other real challenge has been intimacy with my wife. For months I didn't even think of having sex again, but now I am craving that closeness. My virus is under control and I wouldn't do anything unsafe to risk her health, but she isn't ready yet. The time will come but it sucks knowing that she is afraid of being intimate. I totally understand though. Just wish she would spend the time educating herself like I have been forced to do.

Offline novemberguy

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #167 on: February 06, 2015, 09:15:16 AM »
Mine is my employment opportunities abroad. Im form an asian 3rd world country, and I keep on applying for jobs from 1st world countries including the US, but Im always rejected by the employer & agencies after testing positive. They even ask me to pay them for the damages & some even threatened to sue me. =( I just want to work abroad to earn more & provide for my family. Why can't the foreign countries accept hiv+ from a poor country like me? I am very capable to to the job, no OIs and completely healthy.

Offline WowThatWasLifeChanging

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #168 on: February 18, 2015, 07:19:48 PM »
April 14th will be a year since I found out my diagnosis. 3 months prior to this I lost a child so finding out I had HIV wasn't nearly as traumatic. But now that the numbness from my grief is wearing off everything else is sinking in. I thought I would like to have another kid one day so i take a 3 pill a day regimen that is supposedly safe for pregnancy. I never forget the morning pill but on more than once have forgotten the evening dosage. i freak out and my ID doc reassures me as long as I'm 90% compliant I will be ok. My biggest challenge is my eating. I was a horrible eater before this, and now I have absolutely NO appetite. I drink 5 ensures a day and eat just a few things, if that. I am really worried about this. I feel it in my energy, and focus. I just constantly think, if I cannot eat, how long will I live like this, drinking only ensure. And of course, my doctor says well you aren't loosing weight and you are getting calories....but I don't think this is good for me. I have a teenage son and a young daughter. I also struggle like others with what and when to tell them. I want to tell them so they are safe and don't risk getting infected ever. (Although is is likely possibility my infection came from a dentist office and no knowledge could prevent that). I also struggle with disclosure. I went to the eye doctor for the first time since my dx last week and got to the question where it asked about HIV and just marked it no. I cannot bring myself to mark it yes. I have also not been back to a dentist out of fear and also because I don't want to tell them. I have only ever told my boyfriend (who is neg) and my best friend. No family, no one else. That is hard. But I listen to comments they make in conversation and think, if they only knew I had it...

Online zach

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #169 on: February 18, 2015, 08:03:29 PM »
WTW...

I empathize with your loss. I too lost a child just months prior to diagnosis. It did seem to delay my reaction and ability to live for myself.

If you ever need to talk, PM me.

Zach
An honest tune with a lingering lead has taken me this far

Offline yahi

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This is my first post in this forum. I 've been reading your forum long before my hiv diagnosis, i dont know why. Now i feel more comfortable here than in local forums. I dont live in the states, i 'm in europe. The most difficult thing in my life after my diagnosis is to accept myself as I am. That simple.

Happy and sad to find you all, guys and girls.

Offline Joe K

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Hey Yahi,

The only thing required to belong here is to be poz.  I encourage you to start your own thread, in the Living With HIV forum, where you will get all the support you need.  We understand what living with HIV is like, some of us have been doing it for over 30 years.  We'd like to hear more about you and help you, in whatever way we can.

Joe

Offline mleatherboy

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Quote from: Joe K
All suffering is relative, it's not a contest, nor a measure of character.

I don't think I quite understood that when I read that a year ago or so. But you're absolutely right. I never thought of it as a contest but a measure of character I did.

I don't know why I randomly thought of this site again I haven't been online (or blogged, or written, or done personal stuff in ages) but I thought about it.

I remember how scared I was when I wrote all that even though I'd already been poz for almost a year. More like a lost year though. I felt so alienated from people back then and scared of myself and never able to comprehend what my body was going through or what I was going through because I just didn't know myself. I turned away from a few people at that time because I was scared. I tried doing something with a neg guy (condoms of course) but I was still pretty scared. But I remember waking up and going through the day I couldn't think of anything except HIV, what other guys are dealing with, what people dealt with, and what's going to happen to me. HIV+ movies destroyed me too they just tore me up inside watching what people were going through and feeling guilty knowing that I and others have it so much better.

I crushed hard on a few guys who were HIV+ and at one point I almost considered settling with a guy or two just out of fear of being alone and being comfortable, safe, and secure. But I snapped out of it. I no longer worried if what I was doing or feeling was affecting my viral load and stress started to go away. My biggest obstacle hasn't been HIV+ anymore it's been finding a job and being out of work for so long. I've been in school for a while and as hard as I studied and tried just kept failing and failing. I was really close to giving up but I just finished recently. And it's crazy because all the depression, sense of doom or bleakness has just washed away. I'm more motivated then I've been in months now that I'm done with school to get a decent career so I can go out, socialize more and have a life of my own and find what I'm good at.

I guess what I'm saying is all my initial fears of HIV and the things that held me back I overcame. I still sort of favor towards sero sorting just because someone with a common similarity with you feels more comfortable. Like talking about meds and stuff. I still haven't let my family know and don't know if I ever will. I've talked to someone about that before. My attitude towards HIV right now as it was starting to earlier is completely open. I state it in all my profiles and when I do actually socialize I let people know. I'd rather be rejected up front then have it happen later. In a strange sense I can take a little it of pride in being poz. Although I've been told that's controversial. The pride comes from the fact that I was a wreck a year ago and being poz and going through it mostly by myself made me re-examine, analyze, and listen to myself. Because I had to it was a necessity but it also helped me be a little less analytical and be more accepting. Instead of fighting my body or ignoring it like I did for years I became more accepting. I get stressed about something I let it go. I feel tired I sleep. I feel hungry I eat. Instead of questioning why I felt a certain way which I used to.

I don't know if I would have gotten to this point if I wasn't HIV+ but having it and accepting it has helped me accept so much more and that's what I find and take pride in. Even though some are against it.

Offline Gary555

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Hello everyone!

My name Gary and I am just about turn 50 years old in November. I am married to my partner of almost 30 years. I was diagnosed in August 1999. A long story as to how this happened. Fred is HIV-. I started back in 2000 on a case study of Sustiva & Combivir. Went off in 2001 and haven't been on meds until this month. I was in a holding pattern with CD4 around 750 and VL around 4 to 8 K. My current doctor asked what was my secret for not being on meds for almost 15 years. I will NOT take Atripla and was on Triumeg about a week ago. The anxiety / panic attacks and  racing heartbeat were unbearable. The med worked great, but due to my mental issues will never take it. Any suggestions as to what works for a person with mental illness? I am absolutely terrified what the next ones will do to me, but sure beats dying from AIDS complications. PEACE and LOVE!

Online Jeff G

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Hello everyone!

My name Gary and I am just about turn 50 years old in November. I am married to my partner of almost 30 years. I was diagnosed in August 1999. A long story as to how this happened. Fred is HIV-. I started back in 2000 on a case study of Sustiva & Combivir. Went off in 2001 and haven't been on meds until this month. I was in a holding pattern with CD4 around 750 and VL around 4 to 8 K. My current doctor asked what was my secret for not being on meds for almost 15 years. I will NOT take Atripla and was on Triumeg about a week ago. The anxiety / panic attacks and  racing heartbeat were unbearable. The med worked great, but due to my mental issues will never take it. Any suggestions as to what works for a person with mental illness? I am absolutely terrified what the next ones will do to me, but sure beats dying from AIDS complications. PEACE and LOVE!

I had a terrible experience with Atripla and now take Truvada and Intelence . Intelence calls for twice a day dosing but once you get to undetectable you can take it all with a meal making the combo a 3 pill once daily at the same time combo … breakfast lunch or dinner, whatever works best  . I find this combo side effect free but each ones experience may be different . Best of luck and welcome to the forum .

Offline jeffreyart

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I can relate to you Dan. I have major gi issues, c diff almost destroyed my gut have swiss cheese for gut lining. Meds make my gut swell, I take with food, most foods make my gut swell too its a real challenge eating solid food. I just don't take the meds a lot lately its better but I know not good. I tried going on a med vacation once 10 years ago, my t-cells dropped in 1/2 in 2 weeks so I know the dangers. This is my biggest challenge, even bigger than Aids in 97. I'm still absorbing the reality, its so hard to believe a misdiagnosis led to this. I always thought Aids would eventually get me not anything like this. I am seriously thinking on how I can get to France, they have new treatments to heal the gut lining.

Offline jeffreyart

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Lol wow just realized I addressed Dan from 07. I assumed these were all recent, know what happens when we assume, oh well.

Online zach

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it's been an ongoing thread for a long time jeffrey, thanks for contributing
An honest tune with a lingering lead has taken me this far

 


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