Not so newly diagnosed.

[Music In Me and Hiv...]

After reading this site for 3 months, its time to say hello, and thank you to you all.

I was diagnosed on March 1st 2016.

This is my story.

I was out one day looking for a second hand furniture shop, got lost, ended up pulling up in  car park trying ask for directions. The carpark belong to a sexual health clinic. I had never had been checked for an STi's or had a general mens health check. So i thought "Im here, why not?"

Went in filled out the form.

Answered all the obvious question.

Gender : Male
Age: 41

Sexual Orientation: Hetrosexual

Do you consider yourself at risk of HIV infection? NO

And a load of other random questions.......

Anyway I went in had my blood taken, had a doctor feel my balls and have a look around. He found what he called a small unusual patch of skin. He said it should be biopsied. He made me an appointment for the biopsy 10 days later. Also told me that my test results would be die back within 5 days.

Anyway, I went home slightly worried about this piece of skin. 10 days past and went for the biopsy. When he met with me he told me we wouldn't be doing the biopsy. Then proceeded to tell me that I had tested positive.

To be honest I wasn't shocked. I had no reason to suspect I would be positive whatsoever. I haven't taken any chances in the last 10 years apart from with one long term partner. I just thought there might be something wrong as no results had been sent to me after 5 days.

I took the news with a bit of a sigh. But it wasn't like the world had just fallen in for me.

I had been on this site a few years before just reading about HIV in general as I lost a friend to AIDS in the mid 90's so the subject had always been close to my heart.

I then had the massive amount of blood sucked out of me for the CBC. He explained what would happen next etc.

I drove home, instantly told my mum, chatted for a while, explained what it actually meant and how it would be dealt with, and she was as fine as can be expected.

10 days later my results came back. Cd4 164 viral load 95,000.

I didn't understand what the numbers meant so like you do I googled it, and saw the AIDS definition.

I probably would have completely freaked out if it weren't for reading this site again for 10 days from the night I was diagnosed.

And that is why I want to thank all you anonymous people for the wealth of information, encouragement and support you provide.

I thought of my friend...... there was no comparison. Im in a country that provides all this care for free. He didn't. And a lot has changed in the 20 years since he was diagnosed.

I started ART on March 28th. I put it off for 10 days as I didn't want to have side effects over a holiday weekend as I run my own business.

May 11th, had my second bloods done to see how the meds were working.
Got my results back May 23rd. CD4 265 Viral load Undetectable!

That was the first time I broke down since this whole thing started. I was so shocked that i had gone undetectable in just 6 weeks.

I have had ever test under the sun since, everything has come back as no damage. I'm not even anaemic.I never felt ill, no signs really, although in hindsight i did have shingles the year before. Nothing has changed for me as far as my life has been concerned.

I have just gone through 2 weeks of hell with immune recovery and my lymphs feeling like they were going to explode! That has all past for now... so happy days!

Once again thank you for being there for me.

[hiv_rizzy]

So amazing to read your story. I'm sorry that you have gotten infected with this cunning little virus. I think it's awesome though that you got tested that day!! You would been living thinking all is fine until the point where all hell breaks lose. Give thanks for that. What is so motivating is seeing where you have said you have been recovering and that's encouraging for many of us recently diagnosed. Congrats on your UD status 
I'm patiently waiting for my lab tests to start meds to feel totally healthy again. My sinus drain problems and constant night sweats along with some weakness just make me feel held down! Continue to keep us informed. We are family in all of this

[Music In Me and Hiv...]

HI rizzy

I am extremely thankful I found out. Im not religious but something intervened that day!

I am familiar with you and your story.... been lurking around like some HIV voyeur since March 1st! So I don't feel like a complete stranger.

Like I said i didn't feel unwell at all and that is the scary part of all this for me "what if i hadn't have gone in for that test that day".

The only time I felt unwell was after 8 weeks on meds, that was the immune system kicking in again apparently. My groin was felt like someone had punched me in every inch of it! No pain no gain as they say.

I'm not under an illusions that its going to all plain sailing but the feeling you get when you see good results for yourself is amazing! The science is unbelievable.

[hiv_rizzy]

HI rizzy

I am extremely thankful I found out. Im not religious but something intervened that day!

I am familiar with you and your story.... been lurking around like some HIV voyeur since March 1st! So I don't feel like a complete stranger.

Like I said i didn't feel unwell at all and that is the scary part of all this for me "what if i hadn't have gone in for that test that day".

The only time I felt unwell was after 8 weeks on meds, that was the immune system kicking in again apparently. My groin was felt like someone had punched me in every inch of it! No pain no gain as they say.

I'm not under an illusions that its going to all plain sailing but the feeling you get when you see good results for yourself is amazing! The science is unbelievable.

I'm probably the most excited newly DX person here who is totally anxious in getting meds. That seem to maybe have given me some bad luck  I certainly thought I would have started already. By the way what hiv drug are you taking?? It's like one of your best friend right now

[Music In Me and Hiv...]

The wait for the results is awful. And mine came back far worse than I could have possibly imagined. I went from HIV to Aids in one swoop. The I paused for a moment, remembered all the things I had read on this forum, realised I my life hadn't changed at all and just wanted to get started on the meds. I did delay starting them until after a holiday weekend just purely because I Didn't want to risk the side effects making me unable to work. I did begin taking Co-trimoxazole immediately though.

Taking the first dose was difficult, just the waiting to see how i as going to feel on them. Nothing happened! I have had no side effects at all...... yet

[Music In Me and Hiv...]

Sorry I forgot to answer your question about what meds I'm on!
Truvada an ratelgravir or however you spell them!

[hiv_rizzy]

Sorry I forgot to answer your question about what meds I'm on!
Truvada an ratelgravir or however you spell them!

Well they are working quite fine at the moment! Yayy to checking your status that day!! Trust me it could been much much worse. This brings to the highlight that everyone on the earth needs to get tested!!! Once you know your status actions can be taken! It's not like a death sentence like 30 years ago.

[Music In Me and Hiv...]

It must be really frustrating for you not having your results back yet. Dont get me started on "testing for everyone". The worst part of this for me is thinking about all my friends.

I am torn about disclosing as I run a food and drink business! I'm worried about how such a revelation would impact business. Yet the business I am in is full of promiscuity, young adults going out after work, getting drunk , sleeping with random people. All probably not even thinking it could happen to them.

[Jim Allen]

Hi

Not much to add but I did want to want to welcome you to forum.
Glad to here that you are doing okay and started treatment.

Looking forward to hearing more from you on the forum going forward.

Take it easy

Jim

[CaveyUK]

Hey. Sorry about your diagnosis.

Where are you based?

I started out with very similar numbers to you. Am also on co-trimoxazole and started meds two weeks later.

[Music In Me and Hiv...]

Im based in the UK, the same as You caveyUK ?

Its funny you should mention those numbers....... I saw the similarity to you when I was first diagnosed. I used you as I guide/marker to aim for!

Also thought you would be a good comparison as I assumed you were in the UK so the standard of care would have been consistent.

How you feeling about all this personally now?

[CaveyUK]

Im based in the UK, the same as You caveyUK ?

Its funny you should mention those numbers....... I saw the similarity to you when I was first diagnosed. I used you as I guide/marker to aim for!

Also thought you would be a good comparison as I assumed you were in the UK so the standard of care would have been consistent.

How you feeling about all this personally now?

HIV-wise I feel pretty much fine. I take my meds (tivicay/truvada), feel ok with minimal side effects (a bit of dry skin, a bit erm, 'windy' - nothing earth shattering). Numbers are going in the right direction. Have a supportive GF (thankfully!).

My issues have mainly been around the other thing I was diagnosed with which was a complete surprise (Syphilis)....I had the main treatment for it and it's now negative in my blood so the penicillin worked, but due to a minor comment from an optician during an impromptu eye test (rather like your STI test, just thought 'I'm at a loose end and haven't had my eyes tested'), my doc has put me on massive doses of Doxycycline in case of neurosyphilis and I have to go for another eye scan in 6 months - if there's a prodblem it will mean a 2 week hospital stay and lumbar punctures which I'm not crazy about. Of course, I may not have it at all...

Ironic that my main health issues are not directly to do with HIV...

Anyhoo - life goes on. I've not disclosed to anyone other than the clinic, GF and best mate. Have a couple of big holidays booked for the coming months. Work as stressy as ever!

One minor consolation - due to the way it's classified in the UK, it's only officially AIDS if your <200 count came with an AIDS defining illness. It's only terminology but I felt a great deal more optimistic when the doctor told me that...

Standard of care seems great on the whole. I go to a fairly small clinic, and the doc hands me all the drugs in a big paper bag so no need for scripts or pharamacists. They also furnish me with other stuff I may need - medicated shampoo, moisturisers etc. Reading about some other clinics in the UK, this isn't necessarily common!

As you are UK based, it may be worth you checking out the THT site also. Figure you will already know this

[Music In Me and Hiv...]

My doctor never used the term Aids either, he said that is very rarely used nowadays without the infections too. Although of psychologically I feel better coming back way over 200! I was extremely happy with my results after 6 weeks. Gives me complete faith and confidence in the medical care we receive in the UK. We are very fortunate.

I haven't had any moisturises amor free shampoo! I haven't need any of that so if that happens we'll see if its offered. I was offered free condoms ironically, thought it was a bit late for that.........

Im not familiar with THT.

I have disclosed only to 2 people other than medical staff. My mum and 1 sister. Cant tell my other sister as she doesn't take bad news well at all and my brother is an arse so he would be a complete prat about it.

[CaveyUK]

THT = Terrence Higgins Trust. There is an online community there which isn't very busy (compared to here) but good for UK-specific info and has lots of peer support including nightly chat-room sessions.

Ah yes, I forgot about the free condoms

Glad you are doing well anyway. It sounds as though you are taking the best mental approach to the diagnosis which is good to see.

I do plan on telling my parents at some point, but not until I'm well back in normal range and made a few lifestyle changes, so the message will be a positive one rather than something they will freak out about.

I'm beaten up on here regularly for not disclosing to other health professionals (such as dentist), and they again will be told in due course but I have to be ready...

[Music In Me and Hiv...]

I am thankful to have found out when i did, purely by chance. So there is no time for me to have negative thoughts. If i hadn't have been diagnosed I would be in a lot worse situation  before we knew something was wrong than I am now.

I told my mum about as long as it took to drive to her house from the clinic! Ive always told her everything good and bad. Initially she was shocked, but soon read all the information and educated herself. It is great to have that person to talk to it about. I see you have your GF for that. I am in the unfortunate position of having no significant other. I think more about that than I do the HIV. Im 41, no wife. GF or kids and I had just started a new business, everything is going great, but I was ready to settle down. Now that just seems a lot less likely!

[CaveyUK]

I am thankful to have found out when i did, purely by chance. So there is no time for me to have negative thoughts. If i hadn't have been diagnosed I would be in a lot worse situation  before we knew something was wrong than I am now.

I told my mum about as long as it took to drive to her house from the clinic! Ive always told her everything good and bad. Initially she was shocked, but soon read all the information and educated herself. It is great to have that person to talk to it about. I see you have your GF for that. I am in the unfortunate position of having no significant other. I think more about that than I do the HIV. Im 41, no wife. GF or kids and I had just started a new business, everything is going great, but I was ready to settle down. Now that just seems a lot less likely!

You will settle down, meet someone and have kids (if thats what you want) eventually. You probably just need to take it from the forefront of your mind at the moment and let it happen rather than stress about it.

For what it's worth - I'm 44 and have no kids. My gf does however.

Continue to channel your energies into your business - that will help keeping HIV as a background thing rather than something that defines every second of your day.

Everything is still 'going great', you just have a chronic health issue to deal with alongside it all now - just like millions of people have.