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Advice:
AIDS territory
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After three or so weeks of treatment with a nucleoside reverse transcriptase inhibitor (NRTI), I have noticed my arms and cheeks are thinner, and I have more fat in my abdomen now.

It sounds superficial, but this can be more bothersome actual more serious complications because it's hard to ignore and block out, which I try to do to avoid worrying myself sick. I already am self-conscious about the 20 lbs I gained since I turned 22.

It just reminds me so much of the other symptoms I have that are related to being in the health I am in. It's like it's more real to me now that I can see it.

I read that medications in the class of protease inhibitors normally cause this, so I'm confused by what's happening to my body. Maybe it's just part of aging and came at the wrong time.

I can deal with HIV now, but AIDS symptoms are finally hitting me, and I am worried about my quality of life going down to the point I will refuse treatment like I have done in the past. I don't feel that is much of an option anymore though.

So, I feel trapped. Last time I felt trapped it worsened into feelings of suicide as the way out. Through research I have learned of no reliable acceptable method, though, so I don't consider myself as risk for that.

I feel lost now like I have never felt before. I stay in the house most of the time because I'm too paranoid and scared to leave. When I do it's scary. Life just seems to be getting worse very suddenly.

While I'm not afraid to die, I am afraid of having my quality of life drop so low that I feel it's not worth sticking around for and giving up. Like I'd rather die strong and healthy now than 5 years from now should things get progressively worse.

I have lots of questions about the transition to and from where I'm at healthwise, but part of me doesn't even want to know what things will get like. I don't want my life to waste away slowly and painfully. I don't want to be in hospice or a nursing home or having to use diapers. I'd rather die than live like that.

How do people deal with this???
Posted on 10/02/08, 11:25 pm
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Advice:
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Reply #1 - 10/03/08  12:37am
" noone wants to be there feeling so vulnerable it is scary; to be honest, but we do reach that point sometime but not today for alot of us. I feel the same way and so does so many people that are going through it now but acceptance comes along and gives us the strenght to keep going. I am not sure these are the right words to say but there are times I want to recluse and lock out the sun light but I go on like you will. Another day brings laughter and sometimes joy "
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Reply #2 - 10/03/08  8:22am
" I hope you are taking more than just a single NRTI. Single-drug therapy for HIV-1 is essentially useless. It knocks the virus down for a week or two but that is about all. HIV-1 mutates and often evolves to single-drug resistance in a matter of days. This is why the early drug trials showed almost no long-term health gain even though the drugs worked great in the short term, first few weeks.

It was only after the development of combinations of drugs which became known as highly active antiretroviral therapy (HAART) that long-term treatment of HIV-1 infection became successful.

Anyway, I hope you are taking a protease inhibitor, a non-nucleoside RT inhibitor (NNRTI), or some other drug in combination with the NRTI. I am very sorry to hear that this is all being so stressful on you. You are so young, just getting started on your life. I hope you can find the help you need to get back to truly enjoying your life.

I can't say for sure that you will ragain all the joy you deserve. I can only say that many other HIV-infected people have gone on to live very full and joyous lives after getting their infection under control. A few of them have put their stories on the internet:
http://bonusroundblog.blogspot.com/
http://www.mypetvirus.com/
http://www.westom.com/coolsite/
etc...

Getting your mental health back is going to be work. Just as staying physically fit is work, and getting back in shape after quitting physical training for a while is even more work. Find your friends or make new ones to help you. It's almost impossible to do things like this alone.

Keep us posted on how you are doing. Sometimes even virtual friends can be of some help. "
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Reply #3 - 10/03/08  8:37am
" In a lot of ways, I'm right there with you. HIV is such a mental struggle - a person can be otherwise healthy but near-insanity after an HIV diagnosis.

Ask around here, if you think it will help, as far as what symptoms some of the long termers have suffered with, the first signs they experienced that were actual physical signs of HIV/AIDS. People who have been there and done that can offer advice as far as what to expect, if that's something you're looking for or think would be useful.

Try to appreciate the little things every day that bring you happiness and joy. Hiding in the house is tempting, but that's rather a waste of life as well, isn't it? Get out, do things, create your own happiness. Friends really do help, at least temporarily, to get your mind off of the constant worry of HIV. (Even if you don't tell them you have HIV.)

I hope you're not truly at risk for considering suicide, and if you feel you're in danger, please do something - anything - to keep yourself safe. Come back here and chat, call a help line or see a counselor. You may be experiencing some symptoms now, but I doubt your life is even close to over at this point.

Are you a religious person? I'm not, though I can see how faith in God could really help a person overcome the mental side of things. If you are, depend on your faith as hard as you can, it can help.

My current mind-f*k is trying to determine the meaning of life. While I have no real answers, and everyone's meaning is different, I've come up with little things that bring me joy and satisfaction. I guess one thing I've learned is to find satisfaction in every day, not to focus on the entirety of life, something all of us here have learned all to quickly isn't dependable at all.

I wish you the best. It's not an easy struggle, this mental side of HIV, but I do hope that you find ways to overcome it. :o) "
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Reply #4 - 10/03/08  8:54pm
" Duke: When I was first diagnosed in 2000, I was put on Trivizir. It worked to keep my viral load undetectable for as long as I took it, which was about 3 years.

I tried taking 3 at the time, but that caused me to have diarrhea over and over. This itself is a symptom of wasting and AIDS, so my simple logic told me it was bad for me.

My latest doctor again offered me to take 3, and the same thing happened, so I flushed them down the toilet in frustration.

Trizivir works for me and doesn't make me have diarrhea immediately after I take it and again later in the day like the 3-combo approach does. My doctor has told me I can build resistances by taking it, but it simply is not true for me.

When I was suicidal, I deliberately tried to build resistance to Trizivir by taking it every other day or skip a week and continue. To this day, tests shows no resistances.

I guess things are more complicated than we know.

===
Momma:
I don't get out of the house because I have agoraphobia, and it's more than just "I don't feel like getting out." I get paranoid that people outside are trying to kill me. I usually try to avoid even looking at people so that I don't see if they notice me. I hate panic attacks, and I don't like the feeling of them coming on. Sometimes I get out to walk a few blocks to the store, but that's mostly it.

I am agnostic, and it is against my beliefs to worship anything. My agnosticism applies to more than worship, it applies to any knowledge. I may say I know the apple will fall when I let it go, but basically I mean "It should fall because it fell every other time." It's like that. Even so, I have to be realistic to live. But for very serious things such as life and higher powers, I can't be sure and choose to remain neutral. "
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Reply #5 - 10/06/08  10:44am
" trizivir.com/" title="http://www.trizivir.com/" target="_blank">http://www.trizivir.com/
"...
TRIZIVIR is a combination of 3 medicines: ZIAGEN (abacavir sulfate), EPIVIR (lamivudine or 3TC), and RETROVIR (zidovudine, AZT, or ZDV).
..."

Abacavir, 3TC and AZT are all nucleoside reverse transcriptase inhibotors.

Abacavir (formerly 1592U89) is 2'-deoxyguanosine.

3TC is 2',3'-dideoxy-3'-thiacytidine.

AZT is Azidothymidine.

It is a very bad idea to take any antibiotic (antiviral, antifungal, ant-bacterial etc...) in less than the prescribed dose, or to take them intermittently. It may seem as if going on and aff all three at the same time, because they are all in the same pill, would not be so bad. However, if all three have different half-lives in the human body, then even if you quit all 3 at once, one of the drugs would remin a bit longer than the others, and you would essentially be on single-drug treatment during that time.

Anyway, it is good that you have been treated with triple NRTI combination therapy and not a single NRTI. It is great that this combination has put your viral load below the detection limit, and no resistance mutations have been detected yet. If you are sure that your appearance issues are due to the drugs, and those issues are very important to you, then you should do some research, or ask your doctor to, to find another treatment that would not produce this side effect.

I hope you can get help to deal with the panic attacks and agoraphobia. In the meantime, I hope you find the internet a useful way to interact with people without having to worry or panic. It seems to me, that it would help if you could go out with a trusted friend or family member. Most friends won't invite you out if you don't explain to them that this is something you need or want to do. You will probably have to explain to them what is going on, and explain to them how they can help you. That in itself may be difficult for you to do, but I suspect it would be worth the trouble. "
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Reply #6 - 10/06/08  3:23pm
" Duke:

What I said was that just taking Trizivir was all I needed. My viral load went down to undetectable within about 2 months maybe 3 months. I have no side effects with that one at that time, not even the fat redistribution.

In contrast everytime I've take the 3-drug approach I have given up on it due to side effects. I suppose one day I might have to take 3 drugs at once to get results, but I don't yet.

Almost everyone or everyone knows if I talk to them long enough that I have issues with traveling to far from 'safety.' Not everyone understands, but I really have felt a lot of help here. People describe their symptoms and situations, and so often they mirror mine to the point I'm thinking they know me somehow.

Thanks for the tips. You're a big help. "
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Reply #7 - 10/07/08  1:26pm
" Hi there, Im sorry to hear your feeling so low. I recently had a good friend commit suicide. A wonderful healthy woman in her prime and it has been devastating. She suffered with depression and anxiety. But since she did it, it has shown me that my musings on the subject are deadly serious and I should really be thinking more positively. I cant imagine what it feels like to have the mental issues you spoke about like the severe paronoia and agoraphobia I do get panic attacks and high anxiety so really feel for you. I believe yoga has helped me. I dont practice nearly enough but when I do it really helps. Being physical is a good way for me to help my mental health. Im not great on the meditation side of it but just the practice and stillness in the postures is enough meditation for me. Also I havent started on any medication yet, but feel the time will be soon. And reading what you have been saying is terrifying in one sense but also good in another because I have read the replies and know im not alone. The changes you described sound horrible but maybe they might be due to your mental state also? im sure you have considered this already. Im glad to hear you dont consider yourself too at risk from the suicide bit, but please be careful around this. My friend just got a fixation and that was it. It has shown me how easy it can be to just step off. And there is so much more to experience, it kills me to think she will never see a sunrise again or listen to some cool new music. I hope you get through this patch ok and have support in your life. I hope your not offended by any of what ive said and it helps you somehow. Take care of you. Tom "

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