25 years since they announced the discovery that HIV caused AIDS....

[Portofino]

BBC link here

"Around 24 million people have died from Aids since it first emerged and it is the leading cause of death in sub-Saharan Africa"

This has made me think of the old "Tombstone" adverts from my teenage years
where we were all terrified of catching it. And yet all this time later, I don't think I have (knowingly at least)come across anyone affected by HIV, either personally or with friends/partners/families etc.

My only personal brush with the subject was the HIV test during pregnancy. But I'm curious if I'm alone in this?

No, he doesnt. I did consider telling him. But I once approached the subject of his health, as he has told he is ill but the hospital was trying to poison him etc, and he just blew up. His has quite big issues. But that is another story

Thanks Hester. I knew it sounded like a load of rubbish and a very dangerous route to take. But was sort of hoping alternative treatment might help for his sake. But its unlikely isnt it?

My French-conversation teacher when I was working in Brussels a few years ago was HIV pos/had AIDS (I'm not sure where the demarcation is TBH). A couple of years after I left she stopped returning letters .

I was tempted to have DS circumcised, as this still seems to show reduced rates of transmission, but couldn't go through with it in the end.

Sorry to hear about your brother Orangehead

I wish I could talk to him about it, as I really want to know if my nephew has it. He is 18 months. But I suppose if he did and he was refusing to give him any medication, ss would be on to them, wouldnt they?

Well, I'm not a doctor, but I think it's highly unlikely. The only comforting thing i can say is not to panic; he may well find his own way through this in time. And he may have plenty of time: a friend of mine got diagnosed a few months ago, when he was hospitalised with another condition. Turns out he has been HIV+ for YEARS, really many many years but never got tested. At the point he was diagnosed his cell count was catastrophically low; he is now on appropriate drug therapy and doing really well. Getting ill with something else probably saved his life.

So sorry you're going through this, orange. It must be even harder if your brother is not easy to help.

orange, I'm sure there are a lot of alternative medecines that do lots for people, but in your brother's case I think he should at least be discussing his options with a specialist.

Do you think it might be good for him if you let him know you know? I guess he might kick up a bit, but at least in the long run you can support him?

They would be if they knew, orangehead. Is your brother's partner also positive, do you know? And is she also refusing conventional treatment? These days, they can almost wipe out the risk of maternal-infant transmission of HIV with appropriate care (basically, antiretroviral treatment in pregnancy, caesarean section, and avoiding breastfeeding).

I do seem to remember reading that the virus is maturing and not killing as quickly as previously (because a longer life in the 'host' is better for the genetic survival of the virus). Which I guess is better news, if it gives us more time to recognise and treat (and we don't get the fluey-symptoms-1 year-death timescale of 25 years ago). Anyone with better google-skills to confirm this?

I dont know. Possibly as she had a section and didnt bf. Both her and my brother got very depressed after his birth, while speaking to him one time I said how it is very hard and emotional when you have your first. He said they were not depressed because of that, and there were other complications and it was a very worrying time. I think he was refering to waiting for the babies results. Sister in law is the type to do whatever he says

Well, it sounds as if they might be open to some medical advice, at least, and prepared to take steps to protect their ds from infection. So that's a reason to be hopeful. Maybe becoming a dad will in time lead your brother to taking steps that will make it more likely he'll be around to watch his son grow up. God, how worrying for you, orange.

Hopefully. Thanks Hester

Hello Orangehead.

My bf (who is +ve) asked me not to discuss it with anyone, he wanted to deal with telling people in his own, way, in his own time. Fair enough. Only problem with that has been that we have a close circle of friends, who overlap and intermix - so discussing it with anyone has been very hard. Oddly, two of our close friends work in the field of HIV. It's been weird not being able to discuss anything with them.

Well, I've found that hard, and I've found it hard working out how much I am able to discuss things with him, too. So I'm guessing that it must be very difficult for you. Do you have anyone to talk to about this? did you find out from another family member about his HIV status, or is there nobody else in the family who knows?

Hi fivegomadindevon - sorry to hear about your friend.

sorry to hear about your friend cherry.
Basically the short version, he told me he has very ill, could be life threatening etc. But wouldnt tell me what. He has a big thing about secrets and for some reason likes to talk in riddles. I thought it was cancer for a while. Then my mum and dad who had not spoken to my brother in years got involved. All of a sudden they very supportive. They made it very evident they knew what was wrong but it was a secret. Then he started coming out with all the stuff about the medication is toxic so he not taking it, and Philip Day is helping him. I then found the book I put the link to before at my mums house which she had highlightened and made notes all the way through. Some of the notes were personal to my brother. Plus what my brother said about the medication being toxic etc was identical to the book. Since then the snippets of information he gives, thinking I dont have a clue all tie in now. Sorry not so short Story. Yes I have dh to talk too. But he just as shocked as me

Good grief. That's pretty shocking. And poor you.
I remember 'phoning an advice line quite early on and the nice man asked whether I had people to talk to/counselling. And I was quite offended. I thought "how selfish do you think I am? this isn't about me!" It's really only much later that I can see what he was driving at. So i do just want to acknowledge that you're in a fairly difficult position here; knowing, not being able to admit to knowing, and so not being able to help. but caring.

OK. I really hesitate to post this here, because I'm not sure whether it will do you any good at all, given that your db doesn't want to involve you and seems to be acting in a way that actively discourages outside involvement. Also because I do tend to think that people have to deal with things in their own way. furthermore, I can't really tell you anything you can't find out, better, from helplines and books.

On the other hand, your first post was for information.
So, I would just like to say that my experience endorses Hester's and salvadory's posts.
The attitude that the book you linked to subscribes to was quite prevalent in the early days of HIV/AIDS. The treatments then (mainly AZT) were really not very good. I had friends who were very active protesting about AZT, and refusing treatment.
All I can say is that the treatments now are indeed toxic, and have long-term issues but I have seen friends surviving with the new treatments, whereas they just didn't before.
I really question whether this post is at all helpful but ... I just get the feeling you're quite isolated and at the beginning of a quest for information, trying to find your way in a landscape, and just need to gather information to begin to find your way.
Please forgive me if I've read that wrong.

Thankyou Cherry for being honest. So, basically they are not great for (like most strong drugs) but better than going without?

What ong term issues can they have?

Orangehead - Long term prognosis - that's what I'd like to find out. I'm really hoping someone will come on here and explain that. So far, I know that there are issues about liver and heart damage (depending on which combination of drugs have been used) and Salvadory suggests neuro-cognitive issues.

What people have said to me is that you're talking about drugs that have only been in use for under twenty years, so it's still a process of finding out. (Please, someone, do come on and fill in the gaps ... .)

But, as Salvadory also said, it is still amazing to me that we are in a position, now, to talk about long-term side-effects. I remember so well when that just wasn't a remote possibility. The long-term side-effects issue is comparable to, i think, being treated for an aggressive and life-threatening form of, say, cancer, when younger, which, though it may save your life, has long-term possible repercussions. And, I know I sound like a cheerleader here, but the rate of improvement has amazed me.

Your brother probably also knows that the drugs may have side-effects in the present. These can be things such as debilitating nausea and dizziness. All I can say there is that my friend has been extremely lucky with that, and many others are. They are very good, these days, at sorting out a treatment regime that works and is liveable with, in fact, more than just "liveable" with; can be comfortably accommodated within the person's life.

(I'm hoping some of the others come back ...)

I don't have any other useful information, I'm afraid. I'm sure it's true that the drugs have side-effects - they're powerful, and most people have to take a lot of them - and we don't know the long-term impact. But, to put it brutally, we do know the long-term impact of Aids. For me it's a no-brainer. But then I tend to have a lot of faith (quite possibly misplaced!) in modern medicine. It is inconceivable to me that people would eschew conventional treatments for cancer, for example, but some do and it is their right to do so.

I'm repeating myself, but I do think it's encouraging that your brother's partner gave birth via CS and didn't breastfeed. Maybe she would have made those choices anyway, but it does suggest that they have not completely rejected medical advice and so a door is still open there.

Orangehead, there are a number of doctors and medical types on Mumsnet. You might find it useful to post a new thread asking for information in Health.

Wow..can't believe I've found this thread...hello all..

My dh is HIV +ve. We have a 6yo ds who was conceived through the gift of IVF and sperm washing. He is truly a miracle. I thank god/the universe/my guardian angels every day for him, and the fact that this could not have happened if I didn't live in a developed country.

Orange..I'm sorry about your brother and Cherry - your friend too. HIV doesn't have to be a death sentence anymore. My dh is fit and healthy and has been on the meds for 10 years! He has had no side effects, cycles to work every morning, and is generally healthy.

He didn't take the meds for the first 5 years, but then the docs told him he had to be on them for us to go through IVF and in the long run, it is better to be on them.

This thread caught my eye too Rockme. For different reasons from your (happy) ones.

I was a teen when AIDS hit the headlines. I was working in a v.trendy hairdressers in West London. I only went to gay clubs as they were the only decent ones. So many people I knew just sort of disappeared. They would be around one day and just drop off the face of the earth. I knew a fair few drug users and rent boys at the time and some of those lads were so young. People got the virus and died.

My DD was treated at the Middlesex Hosptial when she had cancer. It was the site of the first dedicated AIDS ward (lady Di and all). I used to think of that ward often when I passed the staircase leading to where it used to be. I would think of all the young men I knew that had died. The fact that it was no longer needed was heartening but thats in the UK. Its still a death sentence in so many other parts of the world.