Hi All and hope you are in the best of health and mind.

To begin this will be my first ever time of discussing my illness with fellow HIV sufferers. I have avoided all that group talk stuff because I find it upsetting and I actually hate sitting in the waiting room at my clinic with all the other people who have HIV...so a site is much better thing for me to cope with and hopefully I can benefit and others can benefit from me.

I like the name long term survivors and plan to live many more thats a great positive way to think so it compelled me to join.

ok, so heres a run down on my story
I am a woman, straight non drug user who lives in London UK and Im now almost 37


1998 march I was 25 years old- I was taken very ill to hospital, covered all over in a rash, tempreture sky high, shaking all over, neck lymphnodes swollen to the size of mini cannon balls and throat so swollen I could not even swallow my own spit......I really thought I was going to die I felt that ill.
Not having a clue what was wrong I was intially diagnosed with strep throat and then I recall a bunch of Docters about 6 or 7 debating between them about me in whispers and looking at me with ...well a look that wasnt good and I thought any minute now they are going to come over and tell me I got AIDS or something they way they are looking.
But they did not tell me that, after all the tests they did sent a dermotolgist in to see me the next day and she said its a virus of some sort but no idea what...and was sent home being told I got a tropical virus and I quite believed them to.

How I got infected is another story in its self but basically a very sick indivdual knowingly passed on the virus to me whislt I was in a 1 year relationship with him. He also saw me ill in the hospital that day and never even mentioned it. and I totally utterly hate the guys guts and will never forgive him. I do not believe I was his only victem.

Most of you will of picked up on the fact that the intial illness was indeed my seroconversion which would later be confirmed to by docters after my diagnosis.

How I got tested was pure luck......it was late August and I was in the middle of emmigrating to USA to be with family, I was getting all paper work in order, my family said I would have to have a health check so I did it all before I went to make sure everything was ok so I decided HIV test was needed along with other tests.
Well you can imagine how crushed to smithereens I was when I was told it was positive...I was devastated and shocked....and I do mean shocked, I went to my mothers the next morning as I couldnt stand being alone and the next night I went into shock, shivering uncrotollably, couldnt breath and convinced I was about to die from shock at that point. eventually a nurse came and sedated me and gave me valium and sleeping tablets for the next 2 weeks.

So it was very slow progress for me mentally at first, I was terrified for more than 2 years, not sleeping it was like a living hell, I did not want to take tablets I saw all the storys about how rotten drugs made you feel, it was also admitting that my body is weak and cant cope if I have to take them...eventually my consultant told me quite seriously that I need to take meds my CD4 was 180 and advised I was at rick of the usual nastys (sure you all know) so reluctantly I took them and I was sick for what seemed like months always throwing up, but I got better, it was a slow climb back to a decent CD4....at the end of 5 years my CD4 was 760 and undectable VL.Thanks to combivir and viramune.

I suffered no other side effects my hair did go alot thinner though that could of been age getting into 30's!
I was mentally alot lot more stronger no longer afraind of the virus and strong enough to deal with it I just was not afraid to die anymore.....my strength came from my religion, I converted to Islam in 2003 and its totally made me stronger and have an understanding of life.....everything made sense at last!

2005: I put myself forward for the SMART clinical trials 6000 hiv positive people around the globe would be taking part 50% still stop taking their meds and the other 50% will stay on their med and it was a case of lets see what happens...you didnt get to choose which arm of the study you were on it was done by the flip of a coin and mine landed on stopping meds, which I was pleased about and ready to go for it.
I was monitered very well through out the study and I cant tell you the wonderfull feeling I had of not having to take meds anymore...I could travel without acting like some dodgy drug dealer hiding my meds! It was wonderfull and Im truly gratefull and happy I did the study.

2006: The SMART study was stopped because to many people of the stopped meds arm were errrm dying and getting ill so the study was abandoned....and I was offered to re start treatment and I said no thanks! my viral load was only 6 thousand or so and my CD4 was about 580 so I decided to plod on,.....and on.....and on......pretty much I was the only one left to my knowledge out the whole of the trail that lasted the length of time I did without meds...(a title Im proud of) during this time I married...my husband is HIV neg and we also did discordant couple trials as well.

2009: I had to re start meds this march, my CD4 had plummeted to 160 and my viral load was well a modest 10 thousand. had to take those horrible pcp protector tablets as well which I will be stuck on untill septemeber this year....got to admit I was not happy about my CD4 that low and felt sad!
I was given virumune and truvada this time and its now been two months of taking them within the first months my CD4 rocketed to 420 which me and my consultant were delighted with and my VL dropped to 252....which really it should be undetctable by now so Im currantly awaiting my latest set of results if it is not undectable then Im in for a resistance test, there was also a small trace of protein in my urine and my skin has some rashs of it so I am suspect kidney or liver intolerance from the truvada...have to wait and see what my latest results are though.

And thats the story so far, the tablets have worked very well for me and I believe its becuase Ive had a good tolerance to them, taken them on time, never missed a dose, quit smoking years go and dont drink or do any sort of recreational drugs....lots of praying to god instead now.
I have been extremely lucky to be treated by some of the top experts and researchers in HIV in the uk today and continue to have a very high standard of care from my consultants.
Im absolutely planning on being around for the next ten, twenty years infact im planning on living a normal life just like anyone else, I dont expect to die any sooner than joe bloggs on the street corner. ; )
No one knows when they are going to die and after all you may not even die from this you might die from something else like a freak accident!, so go out and live your life.