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Main Forums => Someone I Care About Has HIV => Topic started by: Bring me sunshine on July 21, 2013, 05:22:24 pm

Title: Please help, urgent help required
Post by: Bring me sunshine on July 21, 2013, 05:22:24 pm
Hi everyone,

 I recently posted another thread about my friend with a very low CD4 count (was 5, now up to 73) and cryptococcal meningitis. My husband and I just spent 4 days with him (we now live a few hundred miles apart so we wanted to spend quality time with him). His behaviour is not rational and his personality has changed so much - I was expecting this but I did not suspect how much in denial he would be.

 He had a date last night with an old girlfriend who he refuses to tell about the diagnosis and last night they had oral sex and everything else bar penetrative sex. They are now going on another "date" and I think part of him thinks if she is infected too then at least he will have company. This guy is one of my dearest and best friends but he is not facing up to the diagnosis, has only told a handful of people and doesn't see why he should disclose it. I make him sound like a beast - my friend of old is a stubborn mule but he is also kind and intelligent and I can't believe he would do this.

I'm now in a position wondering whether I somehow tell her about this? I can't bear to betray his confidence and I am not sure how long he has left and if he found out I told he would never speak to me again (when I think some people are despairing of him at this stage). Please help me with what I can do in this situation. I am based in the UK. Do I phone a healthcare professional? His sister who is a nurse? Do I contact this girl anonymously (who is in love with him incidentally).

My husband refuses to talk to my friend again and I don't blame him, we've been so kind and generous and loving and supportive and he verbally attacked my husband yesterday. I KNOW this is not my friend but my husband didn't know him for long before so he thinks he has always been this nasty, selfish and obnoxious. I know he's not and I will stick by him but I also can't let him potentially endanger someone else.

I really need your help on this. THANK YOU  :(
Title: Re: Please help, urgent help required
Post by: skeebo1969 on July 21, 2013, 06:40:20 pm


   Sweetheart, with all due respect-- you are now asking us to help you make a decision that is morality based in your mind.  These are your morals, so in the end you have to do what you feel is right.

   Why do you feel he has limited time? Is there something else you have not told us? With treatment being what it is, and as long as he is adherent to his HIV meds, it's very likely that his hardest battle was staged against the meningitis.

   I'm glad he is back on his feet, although, I don't necessarily agree with his thoughts if those you described are actually what he's thinking.

  A tip:  A hubby who has washed his hands can also double as a messenger. 
Title: Re: Please help, urgent help required
Post by: skeebo1969 on July 21, 2013, 11:19:50 pm


   I watched a movie with the wife.  It was something I already saw before so I thought a little about the situation you described.

   You might want to sit down with your friend and have a heart to heart, and tell him your concerns.  If what you said is true, and he thinks by infecting this woman it will award him a life partner, he may be disappointed with the results.  She will most likely hate him.

   I agree with you that he may be a bit irrational right now, but it might be caused by something else other than his bout with meningitis.  His own self worth is probably low right now, and with his frame of mind he probably doesn't value the well being of others around him.  It's a pattern of self destructive behavior that he might need someone like you to intervene in. 

   I hope for his sake that none of what you described above is an assumption on your part.  Are these his actual words?  Forgive me, but something here does not sit well with me. 

   
Title: Re: Please help, urgent help required
Post by: Bring me sunshine on July 22, 2013, 04:37:05 am
After he contracted HIV (but before diagnosis) he had unprotected sex with her for almost a year. He has now looked her up again and promised me he would tell her that she needs to get checked but they didn't have that conversation and instead ended up in bed together. He said that while he'd be extremely sad if she had contracted HIV from him then at least they would be in it together.

Another close mutual friend who is extremely worried (and who told two of my friends ex partners to get checked because HE DOES NOT WANT TO DISCLOSE IT) said that he has also said that he told him he intends to have (protected) one night stands and carry on as normal.

I'm sorry for my apparent moral outrage but his refusal to tell a number of ex partners and his assumption that oral sex without protection is ok is not good and worries me enormously.

I say I don't know how long he has left because he has been extremely ill and has discharged himself from hospital. I also say this because his personality has changed completely and he is not thinking at all rationally or sensibly. My heart goes out to him so much and I want to continue to support him but I do feel that he needs to be honest with any potential partners.
Title: Re: Please help, urgent help required
Post by: mecch on July 22, 2013, 06:19:30 am
I'm with Skeebo.  You need to be saying what you are saying to us, to your friend. And NOT to anyone else. 
Your problem is your morality clashing with his. The only way forward is communication between the two of you.
Also, you have SOME, though not complete, ignorance about transmission, and it seems you are ambivalent - uneasy - about sex between sero-discordant people. 

Thats not to say you aren't wise about one thing - yes, your friend is deluded, and IMO immoral, if he thinks he can build a relationship based on lies, withholdings of the truth, and god forbid, infecting someone.  IF he thinks that. IF...

Hey you know what - hash your suspicion about his M.O. out with him.  If its true, and you can't talk some sense into him, he's not all that great as a person and you need to reconsider your friendship.. 

I think you are probably imagining some things, here, but, really, who knows.

Call your friend and speak matter of fact about all this stuff. 
Title: Re: Please help, urgent help required
Post by: Bring me sunshine on July 22, 2013, 07:36:46 am
Hi, thanks for the reply.

I have said this to my friend. Repeatedly. He will not listen and has said he's cutting me out of his life if I persist with this. His brother has cut him out, the handful of friends he has told have distanced themselves and he fell out with his other best friend because they had to tell two of his ex GFs to get tested.

I appreciate that I probably sound like I'm on some high horse here and I can assure you I am not. I have been talking to a mutual friend about this this morning and he said that he is needlessly and recklessly on an extremely dangerous mission. He is doing a lot of cocaine and is having one night stands. You may think that my views on transmission are naive, they probably are,  but I think anyone who sleeps with him or has unprotected oral sex deserves to be told or at least made aware. Surely that's a given?

I don't want to abandon him but my friend says family members, friends....a lot of people have because his behaviour is so reckless and so dangerous. He is in a very very dark place and I think he needs to be sectioned.

Maybe he's not the kind and amazing friend I thought but I also think his brain has been damaged by all of this and I can't bear to just give up on him when he is at his lowest....
Title: Re: Please help, urgent help required
Post by: mecch on July 22, 2013, 10:31:36 am
Oral sex is NOT a transmission route.
Otherwise, yeah, you're concerns are valid.
So what do you want from us?
Sounds like its time to say goodbye to him.
You're not going to get much support, in my opinion, in this forum, for your idea of running around warning people to get tested or not to sleep with him.  I mean it makes sense in your moral universe, and I can understand your frustration, but on that point, I don't think HIV+ people have much patience with HIV- people in this area.
I am sorry for you he's on self destruct.  Do what you have to do I guess. Maybe, depending on where you live, there are public health workers and guidelines and they should take over from here. 
Title: Re: Please help, urgent help required
Post by: Bring me sunshine on July 22, 2013, 10:39:09 am
Thank you. I've given this a lot of thought and I've decided to step back a bit.

He needs to tell his ex partners and it is not my place to tell people - it's his job to inform ex and potential partners and while I don't condone what he's doing or the way he has handled this, I can't use my own moral compass to dictate terms or take that power out of his hands. I'm sincerely sorry to anyone I may have offended on the site - it has, and I hope will continue to be, a very caring and understanding community. I have ultimate compassion and empathy for my friend but I think my own indignation and anger got in the way a little. Ultimately I don't know what he is going through and he needs to reach that stage of disclosing to ex partners himself even though it is unlikely he will do so.

You have answered my question and I thank you for that. I need to step away from this a little - I've spent four very intense days with him and it's been quite intense.
Title: Re: Please help, urgent help required
Post by: mecch on July 22, 2013, 10:52:31 am
One of the things you can do that is very constructive is tell him you love him and that your ideas and concerns about disclosure are heartfelt and that he is free to turn to you to discuss this in the future.  Maybe you have some things to learn, in addition to him.   If he balks, there isn't much you can do. 

If any of these sex partners are YOUR personal friends, real friends, IMO, you have some leeway to speak your mind to them.  Its not "nice" but if all you are doing is informing on facts, in my own opinion, i find this human.  I don't know about the legal issues, nor am I an expert on ethics to really discuss intelligently that.  But contacting strangers, nope.
Title: Re: Please help, urgent help required
Post by: mecch on July 22, 2013, 11:02:00 am
2 pieces of information that might ease your state of mind are:

1) as for transmission, first of all, you don't know if he is telling you he intends to have unprotected sex.   Also, you are misinformed about oral sex. Also, if he has been on HAART for a moment, chances are he is now or soon undetectable. 

2) EVERYONE is responsible for their own choices as per sex. So the strangers you are worried about are responsible for their choices. 
Title: Re: Please help, urgent help required
Post by: skeebo1969 on July 22, 2013, 02:58:24 pm
Thank you. I've given this a lot of thought and I've decided to step back a bit.

He needs to tell his ex partners and it is not my place to tell people - it's his job to inform ex and potential partners and while I don't condone what he's doing or the way he has handled this, I can't use my own moral compass to dictate terms or take that power out of his hands. I'm sincerely sorry to anyone I may have offended on the site - it has, and I hope will continue to be, a very caring and understanding community. I have ultimate compassion and empathy for my friend but I think my own indignation and anger got in the way a little. Ultimately I don't know what he is going through and he needs to reach that stage of disclosing to ex partners himself even though it is unlikely he will do so.

You have answered my question and I thank you for that. I need to step away from this a little - I've spent four very intense days with him and it's been quite intense.

   Just so you know, I'm not offended by anything you have said.  I was unaware that he is also dealing with addiction, so I apologize if you mentioned it previously and I missed it.   If he is threatening to end the friendship the two of you have simply because you keep mentioning to him to inform this woman to get tested for her own well being, then I would have to really doubt how good of a friend he is to you.  I mean let's be real here, you have offered more good will and support to this guy in his time of dire need.  In your words he has been mean and nasty to your husband, who has also been pretty supportive to his wife's male friend.

  I think you've gone above and beyond what a friend is supposed to be.  No offense, but the guy sounds like a jerk.  What exactly is it that you find attractive personality wise?  Have you considered that there may be some codependency issues at work here?

  I hope you don't take any of this as a personal attack.  I think you're a good person with a big heart.

   
Title: Re: Please help, urgent help required
Post by: Bring me sunshine on July 23, 2013, 04:46:46 am
Hey skeebo, thanks for taking the time to reply.

No, thankfully there are no codependency issues although I can understand how it could appear that way! Essentially there are three main factors at play here.

One is that I've been friends with this guy for years and when I went through a particularly horrendous time four years ago he was extraordinarily supportive and was a very good friend to me. Part of me is anxious to repay that I guess. I've a good circle of friends and family and when someone is kind I never forget it.

I also know him as a kind and engaging person. That's why I do feel the meningitis has really effected his brain, his behaviour and his cognitive skills and I don't feel that they way he is behaving is really "him" if you get me? That's why I don't think I can abandon him fully and tell him to get stuffed.

Finally, I just feel very very sorry for him and I've always had a big heart. He has been in a high flying career and was made redundant a couple of months before diagnosis. He lost his job, he has had to give up his apartment, he is alone, he has very little money and he is also very ill, lonely and frightened. I appreciate I may have gone above and beyond what a good friend should do and for that reason I am detaching myself a little from him. I've told him I'm not going to discuss this issue any further, I have made my feelings clear. He asked me to phone him last night to have another lengthy chat and I said I'm busy. I realise I've become a little too involved in all of this and I need to distance myself and it is not fair on my beloved husband who has been an absolute rock through all of this.

I think it may be time for a bit of tough love!
Title: Re: Please help, urgent help required
Post by: Ann on July 23, 2013, 09:05:04 am
One thing I've been wondering about - is your friend by any chance on Atripla? It's very often used as a first combo (Atripla is actually three drugs in one pill).

One of the meds in Atripla - Sustiva, aka efavirenz - can cause mood swings and generally uncharacteristic behaviour in some people. It's a well-known side-effect. If he's on Atripla, there's every chance that is part of his current behaviour problems.

The good news is that there are other meds he can take, meds that are every bit as effective as those in Atripla. In fact, two of the meds he could still take - it's the Sustiva portion that can be problematic.
Title: Re: Please help, urgent help required
Post by: Bring me sunshine on July 23, 2013, 09:12:44 am
Hi Ann, thanks for that. I am not sure of the exact meds he is on, I know he takes seven pills a day and the medical team did warn him that he could see some changes in his personality. These changes are really drastic however. He is aware that he is very angry and volatile recently but I also see that he is not thinking clearly at all, is talking/babbling rubbish at times, repeating himself, is aggressive and is quite manic but above all his thought processes are really compromised and he is not behaving in a sane or his usual fashion. He's behaving like a total dickhead quite frankly. I'm not being melodramatic but the shift in his personality has been so absolute it's like a different being in my friends body. I know part of it is obviously his recent diagnosis but he is displaying all the signs of mental illness also and I also think that this must be due to one/some of the meds he is on  :(
Title: Re: Please help, urgent help required
Post by: wolfter on July 23, 2013, 09:28:57 am
I won't discuss the disclosure aspect of this post at that becomes too contentious for my liking.  I'm also on a 7 pill a day combo post cryptococcal meningitis.  (Intelence, isentress and Truvada)

You indicate he's still suffering from this fungal infection, but I'd suspect he's suffering the residual side effects instead. 

If you'll recall, I forewarned about these other behaviors you are describing.  I'm horrified as I remember back to the way I behaved and acted.  It altered my personality, thought patterns and memory.  It took quite a while to regain a semblance of my old self.  It never completely returned, but there is marked improvements.

This fungus attacks the brain so he isn't necessarily responsible for all his behaviors. 

I luckily didn't have to deal with this particular morality situation as my internal code of morality wasn't altered in that respect.

wolfie
Title: Re: Please help, urgent help required
Post by: Ann on July 23, 2013, 09:30:45 am
Sustiva can cause very drastic personality changes in some people. Everything he's been through recently only adds to the chances that it will adversely affect his mental health. It may not be the only contributing factor, but if it is one of his meds....

Can you ask him?
Title: Re: Please help, urgent help required
Post by: Bring me sunshine on July 23, 2013, 09:34:44 am
If you'll recall, I forewarned about these other behaviors you are describing.  I'm horrified as I remember back to the way I behaved and acted.  It altered my personality, thought patterns and memory.  It took quite a while to regain a semblance of my old self.  It never completely returned, but there is marked improvements.

This fungus attacks the brain so he isn't necessarily responsible for all his behaviors.

Thank you wolfter. I do indeed remember and I've read back over your posts a few times now. My parents are medics and they took him for lunch at the weekend and they did also say that meningitis is a brain infection and not to forget that, that it can have all sorts of knock-on effects that can't be anticipated. I guess it's an unknown whether I'm going to get my nice friend back huh?
Title: Re: Please help, urgent help required
Post by: Bring me sunshine on July 23, 2013, 09:36:20 am
Sustiva can cause very drastic personality changes in some people. Everything he's been through recently only adds to the chances that it will adversely affect his mental health. It may not be the only contributing factor, but if it is one of his meds....

Can you ask him?

I will ask him Ann. Are there alternatives if one particular drug is partly responsible do you think? I need a couple of days of distance right now but when I'm talking to him again I will ask him.
Title: Re: Please help, urgent help required
Post by: Ann on July 23, 2013, 09:52:11 am
I will ask him Ann. Are there alternatives if one particular drug is partly responsible do you think? I need a couple of days of distance right now but when I'm talking to him again I will ask him.

There are plenty of alternatives to Sustiva. Have a look through the Treatments (http://forums.poz.com/index.php?board=4.0) forum - there are quite a few threads that discuss Sustiva and how it can affect people and what various alternatives are available.

Good luck with your mate. He's lucky to have such a loyal friend as you.
Title: Re: Please help, urgent help required
Post by: skeebo1969 on July 23, 2013, 10:07:00 am


   After my last reply to you I happened upon the other thread regarding his stay in the hospital.  I didn't realize how bad he had it.  I apologize for the oversight.  Ann and Wolfter are spot on, and if he is adding cocaine to the mix, it probably makes matters even worse.
Title: Re: Please help, urgent help required
Post by: Bring me sunshine on July 23, 2013, 11:15:09 am
There are plenty of alternatives to Sustiva. Have a look through the Treatments (http://forums.poz.com/index.php?board=4.0) forum - there are quite a few threads that discuss Sustiva and how it can affect people and what various alternatives are available.

Good luck with your mate. He's lucky to have such a loyal friend as you.

Thanks for the tip I will do that Ann. Thanks for your kind words also. I'm losing patience a bit to be honest but I think he is going through hell.
Title: Re: Please help, urgent help required
Post by: Bring me sunshine on July 23, 2013, 11:18:59 am

   After my last reply to you I happened upon the other thread regarding his stay in the hospital.  I didn't realize how bad he had it.  I apologize for the oversight.  Ann and Wolfter are spot on, and if he is adding cocaine to the mix, it probably makes matters even worse.

Oh my goodness, no need to apologise. I probably should have put this issue in with the last thread to give it some context really but I was a bit panicked about his behaviour hence starting a new thread asking for advice. Everyone has been so helpful and generous, I appreciate everyone taking the time out of their lives to help and offer advice, thank you
Title: Re: Please help, urgent help required
Post by: Martha on July 23, 2013, 11:00:43 pm
Bring me sunshine, I understand your frustration. I can relate. Our 2 closest friends are going through finding out they are HIV Positive since April of this year. It has been a roller coaster ride for them and us. I lost my son to AIDS in 96 so I have been thru this once before. My son didn't have mental issues luckily. The husband is really out of his mind and been violent, hateful, punched workers at a nursing home and got kicked out. No one will help him and he doesn't want any help really. He says he doesn't have AIDS just a sinus infection. He has Aids Dementia and PML and not long to live. He was in hospice but because of his violent behavior they had to back away. The hate has been what has been so hard to handle since he was always so kind and a great friend.
Title: Re: Please help, urgent help required
Post by: Bring me sunshine on July 24, 2013, 05:03:49 am
Wow Martha, thank you SO much for taking the time to reply.

I'm very sorry to hear about your son passing away, it must have been such a painful experience. I am sure he is gone but never forgotten. I'm also sorry to hear about this recent diagnosis, this man you talk about sounds a bit like my friend. I'd actually done a bit of reading previously to this on AIDS-related dementia and my friend is displaying the following signs very clearly:

1. Short attention span (can't read at the moment or focus for too long)
2. Trouble remembering (and this includes verbal disphasia as well, he said he regularly forgets the names of everyday words)
3. Poor judgment (Although a contentious issue, this is why I started this thread originally - his refusal to urge those he may have infected to get tested is poor judgement in my opinion)
4. Slowed thinking and longer time needed to do tasks
5. Irritability - the change in him is shocking, he threatened my husband with violence and I know he's done it to a good friend as well
6. Extreme mood swings - I've seen him go from almost mania to a very dark place and back again
7. Thought processes have been compromised

I'm not a trained diagnostician so I've wondered whether it's his meds, whether it's the brain infection or whether he has this. I did broach the subject with him but he told me he doesn't have AIDS and that he has HIV.

Everyone seems to have a very different journey with this condition  :( Thanks for taking the time Martha xx
Title: Re: Please help, urgent help required
Post by: Martha on July 24, 2013, 08:12:38 am
Thank you bring me sunshine. Thank goodness time heals all wounds. My son is in a better place and we had a relationship that many parents only wish for so I am thankful.

You might want to look up Aids Dementia and check your friends symptoms. The diagnosis for our friend of PML (Progressive multifocal leukoencephalopathy) the doctor told us is fatal. The tragedy is everyone has had to leave him because of the violent behavior. He is living alone in their house now almost totally blind, skin and bones and refuses to eat or drink or take any anti-retroviral medicine. We have been told that we must wait until he is unconscious then to call 911. I understand the rights of people to do what they want but being a dementia patient complicates this immensely for his wife who luckily is doing well on her meds except being very thin. She had to leave and move in with her sister. They have been married 31 years and had what we all thought was a good relationship. Now he treats her with such hate it is breaking her heart.
Title: Re: Please help, urgent help required
Post by: Bring me sunshine on July 24, 2013, 08:36:27 am
I'm glad your son is in a better place Martha. There's nothing worse than seeing a loved one suffer and sometimes their passing can be a relief I think. Great you have so many happy memories to treasure  :)

That's heartbreaking about your friend and especially for his poor wife.  My friend is pushing loved ones away also (he hasn't been actually violent yet) but just very angry and aggressive and those who have been supporting him are distancing themselves as he's just impossible to reason with.
Title: Re: Please help, urgent help required
Post by: Martha on July 24, 2013, 09:16:16 am
bring me sunshine, It is sad to say we hope he passes away soon. He is obsessed with possessions that mean nothing and doesn't care for those he loved before. It isn't important to him now. The loving part of him is gone. There is no help for him anymore but I am doing everything in my power to help his wife to keep fighting to live. So far she has been bouncing back thankfully. We love the both of them very much but not who he is now but who he was.
Title: Re: Please help, urgent help required
Post by: Martha on July 24, 2013, 09:19:07 am
Sometimes I wish we could sedate him but you can't do that if they refuse to take any meds. If he was sedated people wouldn't be afraid of him like they are now.
Title: Re: Please help, urgent help required
Post by: Bring me sunshine on July 24, 2013, 09:20:44 am
It's so terrible  :( I'm not sure where you are based but could he be Sectioned? I think the definition is if they are a danger to themselves and/or others. Could he be admitted to a mental health facility?
Title: Re: Please help, urgent help required
Post by: Martha on July 24, 2013, 09:29:36 am
We live in Ohio. His wife has medical power of attorney but as long as he says no legally he can't be forced to do anything he doesn't want to do. They always ask him instead of his wife. He will not accept any social worker to talk to him. It is the most helpless feeling for his wife and family and friends.
Title: Re: Please help, urgent help required
Post by: Bring me sunshine on July 24, 2013, 09:35:25 am
In Ireland it's a bit different. Sectioning literally means being taken to hospital, and detained and usually treated against your will. It is referred to as "sectioning" because it is legal under a section of the Mental Health Act. It's not done that regularly and things have to be pretty bad but over here your friend would definitely have been sectioned. It must be terrible to feel so helpless. It would be kinder to all involved if he doesn't survive for so long, must be so painful for everyone involved. You really have my sympathy.
Title: Re: Please help, urgent help required
Post by: Martha on July 24, 2013, 03:44:32 pm
bring me sunshine, That is very interesting. No one wants to deal with him anymore. Nursing homes even if he agreed say no. He was refused admission to the mental institution because he said no. If he dies from a fall or burns the house down by mistake all that will be said is that was a shame. I do not understand this part of our system but what I have witnessed isn't right. He has no income to pay the rent so he will be evicted with no where to go.