From Italy with love: my story

[Gladiator]

Hello everybody. First of all let me say thank you to all the inspiring and supportive people I found here in the last month while dealing with my new diagnosis. You gave me the strength to face the reality and to understand that this is not that bad at the end…and that we all are probably going to be around for many many years…maybe until when we can kick out this little devil for ever, or something very close to it.

Well…here’s my story. Italian 41 yo, always been healthy and I’m still so. I am gay but always played safe and I have been blood donor for ages, in November I was neg. But then that life changing day came, the 18th of May 2016. The hospital called me back for a "control" and then I found out I was positive. Usual reaction and feelings...
At the moment I have and "half" relationship with a poz guy and I had some soft sex experiences in the last months with him and someone else, but nothing at risk of hiv following the MTS guides...and always safe….therefore after a month spent thinking about how and who I decided to go further, even if, for what I know, it should have been impossible to get it for what I've done.
A very hard month has just passed with all the emotions, rollercoaster, despair etc. etc...nothing new and I don't want to be boring...we all know even too well this part...I just told this to my mum and this poz friend, both supporting and very good to me. I just have one friend died from AIDS because he didn’t want to get the therapy. I know others doing very well, now 25 years already positive, more or less.

That’s why I must say that I would stop talking about long term survivors in the present days ‘cause it seems to me that now this is the normality. Am I wrong? I don't want to offend anybody, of course.

Anyway…the health system here in Italy is great, once you find out you're poz everything is given to you forever for free, meds, controls, and everything connected with health in general.

I had bad cough, sore throat, fever, fatigue, etc. around the end of Feb. and then again in March after a bad day in the woods with no jacket and a freezing weather...but all Italy was in bed with a terrible flu and same symptoms in those days....so my mind didn't realize...and I am still not sure it was a conversion considering that at the end of May I was still p31-negative...and someone told me that this means that the infection must be very very recent...anyway...
They took liters of blood...I am in 4 studies already as newly infected...they said it' s quite rare to find people very recently infected and that is very good for me and good for the research...they will control every single hair for at least the next couple of years. My doctors said that apart the infection I got perfect blood results and no co-infections. My Cd4 are 395 but at 37% and they said it's normal and the cd4 count shouldn’t be considered in this moment ‘cause I’m recently infected and by the way the percentage is ok.
The very good thing is that I got only 978 of VL now: this sounds strange because it should be at many k's or even millions, as I learned in this months of surfing and studying and as doctors said as well. They said that I must have an "Immune system with huge nuts" (their words...) or a weak virus that my I.S. is already controlling. Anyway they already put me on meds Truvada/Tivicay. Now a week, no side effects apart from two funny lucid dreams...more related to what I ate that night like a pig I think...
 
I reckon they want to weaken it at the point I can stop meds and still control it (as I was apparently already doing): the famous functional cure, and structured interruption...I think these names come from US research…do they have the same name there in US? They said that I will be in a group of people accessing new cures (like the monthly injections) and vaccinations as soon as they pop up worldwide.

Anyway…now a couple of questions for the veterans here:

1.   I haven’t find a single word about a defective or weak hiv virus…is that possible?
2.   How is it possible that as a recently infected I am under 1000 VL?

For the rest I am a huge, beefy healthy guy (that’s way the nick), vegetarian, I exercise 3 4 times or more per week, no smoker (or very few occasionally with friends I must say, but I’m going to stop even this), I sleep well. In Italy we have an extremely high life expectancy with hiv for those who are in cure of course thanks to free access to tailored therapies for everybody, and I suppose also thanks to our famous Mediterranean diet, rich in antioxidants, vitamins and well balanced nutrients (which brings life expectancy here anyway very high, 3rd in the world).

I feel good, but even if I may have painted myself as a Superman, I do have fears and thoughtful anxious days, thinking about the future, even if I know I am in the best position I could dream of, apart from being infected. Every single little body issue or little pain I figure myself dealing with strange infections and problems, but then I try to reassure myself it’s just some hypochondria showing up….by the way…I am studying as a neuropsychologist….yes I’m back at university while working (two jobs) and I didn’t stop a single day….even the day I was diagnosed….but considering how I overthink I guess it’s not bad…

I also have a tinnitus, it has been there coming and going for 15 years already, but now I am afraid is for the virus or meds...but here as well I’m sure it’s 90% just stress.

Sorry for this long post, I hope my English is not a total disaster by the way. I just want to thank again all of you for making me feel reassured on many issues and less alone and hopeful.

Now, after one month and few days, I'm starting waking up less anxious and I start giving for granted that I'm going to be fine during the day after all...
So for those who are facing this....time do heals....just be patient and confident...even those angels diagnosed with AIDS at first are here telling us it's gonna be ok...

A last maybe strange question: did anybody ever think about a video chatroom to spend some time together here and there, or do you know any around?

Hug all of you

Gladiator

[Gladiator]

I am not used to forums, so everything that you may find offensive, it wasn't my intention and please tell me. :-)

[mecch]

benvenuto

[leatherman]

welcome to the forums. Sorry you had to find us; but glad you did.

That’s why I must say that I would stop talking about long term survivors in the present days ‘cause it seems to me that now this is the normality. Am I wrong? I don't want to offend anybody, of course.

actually Long Term Survivors is the term given to people who were diagnosed before 1995 and the advent of  triple-drug regimens. LTSes survived the deaths of many friends and family during the height of the AIDS crisis. Many of us took the earliest meds and often are still dealing with the side effects of those meds. This group of PLWH (people living with HIV) had, and will always have, a vastly different experience from those diagnosed after 1995 and that's why we have a special forum here for them and why June 5th was HIV/AIDS Long Term Survivor Awareness Day.

While you are entirely right that there is a new normality now (where PLWH will live out normal lifespans with few side effects), the same is NOT true for LTSes and that's why we acknowledge those long term survivors and the struggles they have gone through and the issues they will continue to deal with. This term (Long term survivors) will not be going away anytime soon, because those people (like me who has been HIV+ for over 31 yrs) are still living (thanks to the newer meds) and unfortunately will still be having issues as we continue to age because of the years we spent without meds or with less-effective meds.

I reckon they want to weaken it at the point I can stop meds and still control it (as I was apparently already doing): the famous functional cure, and structured interruption...I think these names come from US research…do they have the same name there in US?

a few corrections to some very bad assumptions:

1) there is no functional cure of any type, nor will there be one for many years (if ever )

2) Very few people naturally "control" HIV. (as your cd4 count is already low, you have a viral load, and you have started meds, you should not consider yourself a "long term non-progressor" or "elite controller")

3) Structured interruption has been shown to NOT work and is a terrible idea. Without meds, HIV destroys the immune system which leads to aids and death. Now that you have started meds, you will not want to stop meds, which would allow HIV to flourish again - damaging your health and leading to sickness. You will need to remain as close to 100% adherent from now on to ensure that HIV does as little damage as possible.

4) Meds do NOT weaken HIV. Meds only interrupt the HIV life cycle. Once you start meds, you will be taking them the rest of your life - or until better meds or a cure is developed. If your doctors suggested that you could stop meds at some point, they either misspoke or you misunderstood.

[Gladiator]

Thank you so much leatherman, really.

For the point 1 I was wrong, I meant functional therapy.

For the point 2 they said that the CD are low cause is a primary infection, and that the % is what is more reliable, anyway I didn't mean I am an elite controller, they just told me it's rare to have a low VL without meds (when I was first diagnosed).
For the rest I am still learning, and I will definitively do what my doctors will think is the best for me ever.

Thanks again for all the explanations.

I'm accepting that taking a pill or two or even three is not the end of the world, it takes a second to be swallowed after all.

The doctors are very confident by the way that in a couple of years mxm the injunctions will be around.

I got a wild type by the way :-)
Hugs

Glad.

[Tonny2]

          ojo        Hello Gladiator...welcome...do not feel bad, we are here to learn, you can always make some notes and talk to your doctor about what you read here...as a LTS, I agree with leatherman, we, old timers, are dealing with issues that you, newly diagnosed people, may have never go through in your lifes, thankfully, we had not other choice, either taking those early drugs or die, even if I would have known, then, that those meds were toxic, I would have still taken them...you just had information from a person who has a lot of wisdom about hiv/aids...again, welcome, keep us posted, best of luck...ah!, I know a guy who is in your same situation, low VL, although, he is not a V.I.P. member of this club, he is taking older medications than yours, but he is doing great, UD and cd3 800, cd4%40...hugs                           ojo

[Gladiator]

Thank you so much guys, really, you are great and supportive guys.
At the moment I am dealing with some anxiety issues I think, that I try to stick to the side effects, but the first ten days I didn't had any....so I think that my symptoms are more related to anxiety for the dx.
I wake up thinking about this with a stone in my stomach and then here and there some strange sensations in my head, accelerated heartbeat, sweats, sensation of fainting down, but I had something really similar in the past, before hiv...I spoke to my dr. and she said she also think it's probably just anxiety (they are in fact the physiological symptoms of anxiety...)
Sometimes it seems I'll never be used to this. As a psychologist I know I'll be fine with time, but everything to me seems catastrophic now...and anxiety is very tricky and gives you the symptoms you fear most...and the I fear about failures in therapy, long term side effects etc. etc.....rationally I know that we are very controlled and followed by great people....that things have improved so much now, that our life expectancy is practically normal...but feelings take much more time....

[Tonny2]

Thank you so much guys, really, you are great and supportive guys.
At the moment I am dealing with some anxiety issues I think, that I try to stick to the side effects, but the first ten days I didn't had any....so I think that my symptoms are more related to anxiety for the dx.
I wake up thinking about this with a stone in my stomach and then here and there some strange sensations in my head, accelerated heartbeat, sweats, sensation of fainting down, but I had something really similar in the past, before hiv...I spoke to my dr. and she said she also think it's probably just anxiety (they are in fact the physiological symptoms of anxiety...)
Sometimes it seems I'll never be used to this. As a psychologist I know I'll be fine with time, but everything to me seems catastrophic now...and anxiety is very tricky and gives you the symptoms you fear most...and the I fear about failures in therapy, long term side effects etc. etc.....rationally I know that we are very controlled and followed by great people....that things have improved so much now, that our life expectancy is practically normal...but feelings take much more time....

             ojo        Hello...why don't you try some breathing exercises to ease your anxiety (pranayam), it helps with my anxiety...wishing you the best of luck, keep us posted...abracci                                  ojo

[Gladiator]

Tks I will straight away  I am in the waiting room for the second week test. see u soon 

[Tonny2]

          ojo        Hola....good luck, sending you good vibes, keep us posted...abracci       
                                                                                                                  ojo

[Gladiator]

Well Guys good news from here.

I just found out today (I went to the hospital for the blood test at one month) that after only 2 weeks on Truvada/Tivicay my VL is already undetectable!!! In fact I was only 978 even if I was recently infected (and for this the doctor told me that I was doing great even without meds) but this is very reassuring!!!
Also my CD4 went from 398 to 525 (but even here the doctor told me that it was normal having 398 with a primary infection, for the virus itself and for the stress of the diagnosis). Anyway this is great!!!!! And for this I strongly recommend anyone to go for and stay always on meds...they work very well!!

A big hug for everyone, most of all the fantastic supportive veterans here :-)

[Gladiator]

If anyone will read this......after only one month of therapy.....my doc was astonished....undetectable after two weeks and almost 600 CD4 after one month (from 395). Blood text perfect, no intolerance and no side effects. She wants to see me in two months now and after even less...

If someone is stuck in doubt about meds and reading this....guys and ladies.....go forward with it....soon weekly or monthly or even bimonthly injections (or maybe still less frequent) and immune system boosters will come out also, she told me for sure....in about a couple of years more or less, and I am in an hospital part of a global research group worldwide scientifically absolutely reliable (USA-EUROPE-SOUTHAFRICA etc.).....but they work properly only if you are already controlled with pills before.

Stay on meds....always.

The science is doing great and this can only go better and better.

At the beginning I was terrified, now I barely remind myself of it here and there....life goes on and I feel good as when I was Neg. Apart from the psychology of it and that half second of pill swallowing nothings has changed at all.

It is true that I discovered it very soon and with no damage on my immune system, that't the reason for testing, don't be afraid.

I hope this little drop in the ocean will give someone the courage to do what it is necessary in his/her specific condition.

Let's give positive thoughts to all of us and to science to go forward and beat this little monster down.

Hugs from Italy

Glad.

[Gladiator]

The veterans here and the people sharing from all over the world has been vey supportive and touching, thank you so much...