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killiansdad
Newbie

Reged: 06/29/08
Posts: 2
my partner is positive and having a very hard time
      #240326 - 06/29/08 11:53 PM

hello everyone

My partner is positive and has been struggling for some time with depression and stress. He learned he was positive early in our relationship, and although it has been challenging at times, we love each other very much. I am not positive, and frequently get tested.

The thing is, he does not believe in HIV meds. For a few years after his test results, he refused to seek any sort of medical treatment. I have basically begged him to talk to any medical professional, and only this year did he do so. He still does not want to take any meds, and talks about taking a strictly holistic approach.

We have been seeing a couples counselor on and off for the last 2 years, and through that I have come to the understanding that I will respect his choices and encourage whatever course he decides.

I guess I'm reaching out tonight, to those who are fighting this themselves or to those who support their loved ones living with HIV. I would like to help my partner anyway I can. I love him, and being positive can't change that.

Thank you all,
KD




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Jv40
Member

Reged: 04/17/08
Posts: 14
Loc: Kent, UK
Re: my partner is positive and having a very hard time new
      #240341 - 06/30/08 01:57 PM

Hello KD

I'm sorry to hear about your partners struggle. I hesitate to say that I can understand his perspective because even though I went through a similar thing I don't wish to be glib and its different for us all.

If your partner has depression then that will be controlling the entire way he feels about the world, and there is almost nothing he or you can do to change that. Not everyone 'believes' in depression, despite me being very ill with it 4-5 years ago my mother-in-law still thinks it is a 'state of mind'. I think if anything, to get psychiatric treatment or counselling is your most immediate challenge. I was put on antedepressants after I was very ill; they helped me cope, they helped me sleep, and feel less anxious, cry less, they were just what I needed whilst I battled to come to terms with things and readjust to my new situation. They didn't cure all my troubles but they helped me to see things a bit clearer and from a more positive perspective. I come across people who won't take neurofen for a headache and I could die laughing when I think of how much medication I'm putting into my body. And because of that I'm still alive and still healthy and strong and functioning.

I don't know how you can get across to your partner that the holistic approach kills people but if you look at Africa... Admittedly diet plays a huge role but even then its eventually comes down to drugs. One in an umpteenth amount of people might have the ability to fight the virus without drugs but for most of us, if we don't take the drugs we will die. And the dying may not come until the end of a long painful debilitating and expensive illness. If he really knows this, and is not clouded by depression, then you have to accept and respect his choices and do what you can for him until the end. But that makes me sad to think of it because I know how responsible for these feelings depression can be. And if he leaves it too late, such a lot of damage will have been done to his body that some of it will be irreversible and his life span will have been greatly reduced.

I wonder how often people who say they want to die, really want to die. Your partner might not be saying he wants to die but by denying himself the treatment that we all need, that is essentially what he is doing. What a tragedy it would be to decide too late.

Ok I've got to finish now as dinner needs cooking. I wish you and your partner well in whatever happens going forward. I can see that this must be incredibly hard for you, I think you're doing all the right things, just keep on doing them and you will find the strenght to carry on.

Julia

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Samurai
Fanatic

Reged: 06/25/08
Posts: 68
Loc: Texas, USA
Re: my partner is positive and having a very hard new
      #240352 - 06/30/08 05:34 PM

Just read your post. I could not be more happy taking my meds and I have no side effects. The anti-retro viral drugs today are fantastic but it is important not to wait too long to start them.
Also, it is important to take the meds to become and stay undetectable on your viral load to lessen you chance of giving it to a magnetic partner (poz/neg). The drugs use to be much more toxic with bad side effects but that is mostly a thing of the past. I am so comfortable living with HIV today I could not imagine doing it without the medication. Good luck to you both.

--------------------
I am forever amazed at the abundance of hydrogen and ignorance in the universe.
~Albert Einstein

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carlos12
Member

Reged: 06/27/08
Posts: 11
Loc: MN
Re: my partner is positive and having a very hard time new
      #240388 - 07/01/08 01:35 PM

hello this is Carllos I have a similar problem like yours, but I'm with the hiv+ my boyfriends is not for now im not taking any madecine yet whoever im trying this drink call rejuvin natural suplemen is a water that i hope work same how im afraid and my bf suport me uswell but he is having a hard time is not easy dont give up on him and yourself, i just dignose it may 16 2008 good luck to you. visit gethealthyagain.com I dont know if the rejuvin water helps but i have faith and hope good luck my imail is ecuarez74@gmail.com your friend

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JohnBarrow
Newbie

Reged: 07/02/08
Posts: 2
Re: my partner is positive and having a very hard new
      #240424 - 07/02/08 10:11 PM

I never know exactly how to respond to this subject, and it comes around uncomfortably often.

LIke the previous poster, I am HIV positive, and have been so since the 1980s. The miracle of highly active anti-retroviral therapy changed my universe from one where my friends were dying to one of life and living. It's hard for me to imagine how one could choose "not to believe" in HIV medications.

It seems many people have issues with "medicines," which are artificial, and a constant reminder of the presence of the virus. Unfortunately, the virus, at some point, will provide its' own reminders, and these may appear as very severe illness.

The survival rate for untreated pneumocystis pneumonia in undiagnosed patients in the emergency room is not good, and unchanged from the 1980s. Cytomegalovirus infection causes blindness. PML causes dementia.
Kaposi's Sarcoma is disfiguring. All of these complications are vastly reduced in the HAART era. At some point, one must ask why.

By delaying therapy, your partner is putting himself at risk for death from multiple causes, and reducing his chances of a full, healthy life. A French study a year or so ago showed that people with HIV with good viral control now have essentially the same longevity as those without HIV. There are few more incredible success stories in modern medicine than this.

Remaining off of therapy is also putting you at an increased risk of infection. HAART drives down the viral load, and this reduces, but does not eliminate, the risk of viral transmission.

Again, I don't really know how to respond to these broad rejections of what seems incredibly obvious. If he has specific questions, I'd be glad to try to answer them, but in the meantime, to some degree, accepting his decision is enabling a very destructive behavior, and putting yourself at risk, too.

If I can help you in any way, it would be my pleasure to try.





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JohnBarrow
Newbie

Reged: 07/02/08
Posts: 2
Re: my partner is positive and having a very hard new
      #240425 - 07/02/08 10:13 PM

Carlos,
I wish you well with your health. I can guarantee you that there is no magic juice that is going to impact your HIV disease. Good nutrition does help to maintain over-all health, but the disease process of HIV infection is not due to nutritional deficiency, but due to viral destruction of the immune system.

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Robert1
All Star

Reged: 05/29/07
Posts: 96
Re: my partner is positive and having a very hard new
      #240426 - 07/02/08 11:18 PM

Tell him if he doesn't "believe" in meds he can at least get them with ADAP or his insurance and send them to AID for AIDS (aidforaids.org) They help those who really want to survive HIV in the developing world but don't have the opportunity that your partner does.

Your partner is on a suicide course and you should really let him know that it isn't some casual decision he's making, but one that will eventually end his life. He needs to gain some knowledge ....find out about the SMART study which showed that people were in danger off of treatment for a whole bunch of things including heart attack....so every day your partner is taking a change and you with him. If his CD4 count is too low he's also at risk for cancers and all sort of nightmarish opportunistic infections. he needs to get a CD4 count and a viral load test. He needs to come back to reality. He needs to acknowledge how ambivalent he is about living.....cause he's not making an informed choice!



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jbkimbrell
Newbie

Reged: 07/02/08
Posts: 1
Re: my partner is positive and having a very hard time new
      #240427 - 07/02/08 11:25 PM

Dear friend, it sounds as if you and your partner are at a crossroads. I am always sorry to hear that yet another person has become infected with this horrific disease. Please try to remember that your partner sounds as if he is living with major depression, as can be expected. Although it is difficult, please try to allow him to retain his autonomy and develop through the stages of depression that he needs to go through. It sounds as if you may have to decide how much you are willing to take. My experience is that you may only be able to set some very clear boundaries and what limits you are willing to endure. It is painful, but you are not going to be able to change him or his belief system. Please do not stop supporting him though. Please continue to encourage him to seek treatment with a qualified therapist for his depression first. Perhaps once he has dealt with his depression, and other underlying problems, he may be able to think differently about treating his HIV. In the mean time, perhaps you can seek treatment for your anxiety as well. It sounds as if you may need some support in this. A qualified therapist can support you in learning how best to recognize his autonomy while helping you to learn how better to decrease the anxiety you are experiencing. These situations are never easy; please continue to practice safe sex with your partner and try to support him as much as you are able to. Many blessings always.

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billyjames
Newbie

Reged: 07/03/08
Posts: 3
Re: my partner is positive and having a very hard new
      #240432 - 07/03/08 05:46 AM

I understand your partner's attitude. I too had the same problem: I, who had always been healthy as a horse, now had to take a pill every night in order to stay alive. I hated it...but I did it. It was helpful to me to remind myself that there are many, many people who take life-saving medications for many reasons, not just HIV: heart disease, clinical depression, ...the list is long. I gained strength from attending meetings of a group in L.A. called the Wellness Community, a group of cancer patients (I also had that) who have such wonderful and inspiring stories to tell. Their fight to stay alive and to live fully gave me heart to face the reality of my HIV. Maybe if there's a similar group in your town, attending and listening to the stories of others who are far worse off than he is might enable your partner to gain some perspective on his illness.

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negativewithpoz
Newbie

Reged: 07/03/08
Posts: 2
Re: my partner is positive and having a very hard time new
      #240437 - 07/03/08 02:09 PM

hello! it's so sad to listen to your story and it is all too familiar to me.

about a year ago i met this wonderful guy that filled me in every way possible, but through a series of events found out the very same day that we made our relationship formal that he was HIV positive (i found out he had unprotected sex with a previous partner whom i knew was HIV positive).

this was disastrous, particularly for me who have always been safe and terrified of HIV. Nevertheless, he still was the wonderful guy i fell in love with, and decided to stick with him.

To this day i'm still negative (knock on wood) but we're both very confused on the topic of medication. In our investigation we came accross the statements of the HIV denialists, and were even more confused.

I can understand that the major fear, one we have as well, are the many side effects that HIV medication has, which in our opinion are terrifying.

Thankfully, he hasn't had to start treatment still, but i'm afraid pretty soon hes going to have to. We live in Puerto Rico and its totally crazy. Public health here kind of sucks. The Doctor at the government HIV clinic wanted to start him immediately on AZT and hadn't even done drug resistance tests. He changed clinics and is now with what seems to be a great one, that gives HIV patients various treatment options (even though they still dont have Atripla, but do have the combination of drugs that Atripla is made of.

In the end, we have both understood that hes gonna have to take his meds when the time comes, since its way too big a risk not to.

Needless to day this has drained me emotionally, were both going to a counselor and sadness has been a big part of our first year together (go figure) . However, some days are better than others...in PR HIV culture is hidden underground and you get the feeling that its you alone in the world battling against HIV. Still, hes a wonderful human being and I know pretty soon we'll reach our happy place.

As for your partner, only thing I can say is that you should try, as I have, to focus on the many people that are taking the HIV meds without serious side effects, thank goodness i have a good cyberfriend that even before this happened, had disclosed his hiv status to me...and has helped me a lot..he's on atripla and swears by it, stating he has had no side effects..Ive also met him in person, hes been HIV pos for over 10 years and looks great and healthy.

The truth is that if he takes no medication, most med studies show you have around 10 years to look forward to whereas with med, even if they have side effects, you have a pretty good chance of leading a "normal" life whatever that means.

It would be great if you could keep us up to date about the situation, and if you'd like send me a pvt messageas i see we're in similar situations and guess it would be good to share experiences?

best of wishes to you both.

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danmass
Newbie

Reged: 07/04/08
Posts: 2
Re: my partner is positive and having a very hard new
      #240460 - 07/04/08 10:38 AM

Hi. Two anecdotes for you from my own life.

A friend of mine who had a strong spiritual life, was a yoga instructor and practiced yoga daily, took care of his body, slept enough, ate carefully---this man for several years was able to keep HIV at bay. All of us were excited because we felt that this man, because of all the healthy and careful aspects of his life, would be able to fight HIV that way. Finally, he went into decline and died rather quickly from opportunistic diseases. This was before the advent of the drug cocktail in the mid '90s; if he had had access to that, he might well have lived. The point is that he was pretty much a poster boy for good health, and yet that was not enough to keep him from succumbing to HIV.

The other anecdote: I asked my HIV nurse one day if my meds were really responsible for my good health as an HIV+ man. I was hoping for some scientific proof that could convince me that it was worth stayiing on meds. Her response was simple: "I can't prove anything. All I can do is point to all the HIV+ patients I know who are on meds and are doing well." That was such a simple statement, but to me it was completely reassuring. I think the idea was that you don't need to make it complicated----just look at the HIV+ people who are on meds and who are doing well and living good lives, and that's all you need in order to be convinced.

I hope this helps. I would tell your boyfriend to look into alternative therapies, because of course they can be helpful, no question about it. But use them ALONG WITH antiretorival meds, since the meds are the backbone of treatment. Good luck to you both!

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cunta_stalwart
Grand Master

Reged: 06/27/08
Posts: 175
Re: my partner is positive and having a very hard new
      #240466 - 07/05/08 06:28 AM

I am the biggest skeptic on the planet, I have spent the last 3 months reading everything from both sides, the nay sayers put up a good case and I have no doubt not without foundation, yes they can quote cases and statistics, yes they can say drugs are toxic etc etc, but one thing that I do know, perfectly healthy people die with HIV, yes there may be other factors, it may not be the HIV alone but that doesn't matter because the outcome is the same.

I did not want to have HIV, when I found out a few months ago, I did not want to believe I had it, I didn't believe the test, when I got my first bloods 145 23% 3k after only less than 12 months of infection I did not want to take any meds, 3 months later.................Atripla

Yes the Pharma's are making shed loads of money from HIV and probably have interest in continueing to do that, if there was a cure tomorrow - billions of revenue would dissapear, kepping people alive is their business because if you are alive you are taking meds. It wouldn't surprise me if HIV was manmade for this purpose.

Human greed has a lot to answer for but one thing is for sure, without these meds to sustain us we would shurely die.

HIV has turned my life upsidedown in every way I can imagine, there is not a thing I can do about it except look forward and enjoy the extra chance I have been given.

--------------------
How Many Roads Must A Man Walk Down Before He Admits Hes lost

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john4e
Newbie

Reged: 07/06/08
Posts: 1
Loc: Colorado
Re: my partner is positive and having a very hard time new
      #240479 - 07/06/08 10:14 AM

My partner and I both tested positive in 1985 and there were no effective meds for HIV at that time. When AZT hit the scene all we heard were the horror stories about how toxic it was. I was a “new age anti-western medicine” kind of guy and I was 100% sure I could beat HIV without taking meds. My partner got pneumocystis in 1988 and again in 1989, developed dementia for the last 6 months of his life and died in early 1990. He had tried AZT and I was sure that it made him sicker so this only solidified my negative thoughts and fears about HIV meds.

I continued to refuse to take any HIV meds and tried every alternative treatment available, I mean EVERYTHING! I kept detailed records of the supplements I was taking, the therapies I was using, etc, because I was sure I was going to beat HIV without meds and I wanted it all documented. I believed all the hype about HIV not being the cause of AIDS, the conspiracy theories that abounded at the time (and sadly still do), etc. The tricky thing about HIV is how it progresses in each individual at a different rate so the longer I stayed healthy the surer I was that my approach was working.

My lab work however was telling a different story. Every time I had blood work it indicated that the virus was getting stronger and my TCells were decreasing. My Viral load was in the millions and my TCell count was 6. I was not feeling ill so I still insisted that these were “only numbers” and I was not going to get sick. Early in 1996 my quality of life made me realize that my approach was failing. I began meds but I had so much fear about them that as soon as I had any side effects I would stop taking them. I did this on and off for awhile, then finally gave up at the end of the year in 1996.

For the first 8 months of 1997 I was sick with constant headaches and fever from time to time. In August of 1997 I had a grand mal seizure due to HIV encephalitis – what a wake up call! I went back on meds but still had problems with them and stopped again and had another grand mal seizure in 1999. Fortunately 1999 I was able to find a combination of meds that worked well without side effects and have continued to get healthier and healthier and have been in excellent health for about 8 years now.

I could also tell you about the countless friends I have lost because they did not break free of the limiting ideas and fears about medications and insisted they could beat HIV without the help of these life saving medications. I still deal with some anger around this topic when it comes up but I have so much compassion for anyone going through the process that I went through. All I can say is try your best to be there for your boyfriend while he goes though this process. In 1991 I met my current partner and he was HIV negative. He worked in the HIV prevention field and was alarmed that I was not taking HIV meds but supported me anyway. I know it was extremely difficult for him to do and I was and am so grateful that he hung in there with me. He somehow knew that he had to let me work my way through my fear and anxiety about taking meds and about western medicine in general. When we met in 1991 we expected to have a few good years together due to my health and here we are 17 years later enjoying life together! I hope you and your boyfriend get to have the same experience.



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JulioHBHC
Newbie

Reged: 07/08/08
Posts: 2
Re: my partner is positive and having a very hard time new
      #240541 - 07/08/08 12:53 PM

Hi there,
in one point of our life we have to understand that we need to give chance to other, to work and accept things that life gives to us, even if during all that process feelings are involved. You just need to continue being support for him, understanding and give him every single day encourage to take care himself, not pression, no questioning, just a regular basic conversation about all of this about HIV/AIDS.
Also, let him know that reasons because you are talking to him is because you love him, that love means most of the time forever and that is exactly what do you have onmind with him.
But, remember, just as a conversation, our partner cant see us as a counselors and we cant be them, even if we work in this field.
Hope everything be well with you and your partner
J.

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George22
Newbie

Reged: 06/13/08
Posts: 4
Loc: California, Palm Desert
Re: my partner is positive and having a very hard time new
      #240670 - 07/14/08 10:11 PM

I've been positive for over 20 years and been on medication for over 14years, still doing well and keep it going everyday. the world has come along way and there is lots of great information out there. the important thing is you get a hiv specialist doc to work with. that way you dont get some rookie. take care and make sure he eats.

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