Tested positive month ago.

[paintedroom]

Just thought i should say hello.
I`m a 50 year old Irish guy who tested positive about a month ago.I have no idea when i contracted this infernal virus.
What a strange otherworld of feeling this is - other than feeling a general sense of fatigue and in the last 3 weeks periodic low grade fevers,i`m ok but always the shadow now.My biggest concern of course is the numbers.Am i presenting late stage and what does that mean for the immediate future ?
I have my first Hospital appointment next week.Perhaps things will be a little clearer then ?
I have read many of the posts here and feel very fortunate to have such a resource.Very fortunate to be in 2016 i hope.
Thanks to all who contribute here.

[Jim Allen]

Welcome to the forum.

Have you had conformation testing done already?

Anyhow I am sure when you have the appointment things will be more clear, they will ask a ton of redundant questions its routine and of course they will take a history. If they have not taken bloods yet than bloods will be drawn for CD4 count/Viral load and some tests to help determine treatment options, The results will back a week or two later and you will than be able to start treatment.

Take it easy, late stage or not you will be fine.

Jim   

[paintedroom]

Yes i have had confirmation.

Than you for your reply Jim.I understand there is a lot of information out there that is time sensitive.It`s possible to get the impression that if you present late stage(percentages of people my age presenting late stage are about 50%) you might not see the year out.My imagination is susceptible to wild and dark flights in this uncertainty.
Thanks again.

[Jim Allen]

Hi

 

You are over thinking it.  I was diagnosed "late" ... well I started treatment late, long story. I am fine and so will you be. Don't worry about it, just go to your appointment, get the tests done and start treatment.

Jim

[paintedroom]

Will do.

You have calmed the fire in my head.

Much obliged.

[Jim Allen]

No problem.

If you are Dublin based there is a HIV peer support group.
They do cinema, walks, events and monthly drinks/night outs etc. The next monthly drinks is tomorrow night i think, Ill be going. 

On https://www.meetup.com just look up Plus-friends-Dublin

Jim

[Jim Allen]

Found it, here is the link: https://www.meetup.com/Plus-friends-Dublin/

[paintedroom]

yes based in Dublin.

I can see how important the social side of this will be.I will certainly go but think i will wait till i know more about the respective counts.

Very grateful for your help Jim.Hope to introduce myself to you in person in the near future.

[Jim Allen]

 

Cool, no problem and look take it easy and stop stressing about counts.
I mean it, you will be okay.

Jim

[paintedroom]

Just got called with CD4 results.am in work and head fried.

CD4 54
No viral load for 2 weeks.
Have to go in Monday.being put on 4x1 per day including antibiotic.
Couldn't talk to Nurse as was in work.Bit of a basket case.What does this mean ?

[zach]

Just got called with CD4 results.am in work and head fried.

CD4 54
No viral load for 2 weeks.
Have to go in Monday.being put on 4x1 per day including antibiotic.
Couldn't talk to Nurse as was in work.Bit of a basket case.What does this mean ?

Are you ready to hear this at work? Sit down, take a deep breath.

Don't freak out when I say this.

You have AIDS.

Mind fuck isn't it? Keep breathing. Not freaking out are you? I want you to ask yourself a question... how do you feel? How have you felt the last few weeks? I don't mean emotionally and all the stress. I mean are you sick? Are you extremely tired?

You've caught this in time, I promise you that. You can type, you're coherent, those are good signs.

The meds you're going to be put on will do two things. One, the HIV meds will suppress the virus. That will stop viral replication, and over time your CD4 count will increase. Two, the antibiotics are called prophylaxis, they will prevent "opportunistic infections" (google that)

You need to be adherent to taking your meds. That is now the single most important thing in your life for awhile. In time, you'll eliminate the prophylaxis meds, and the HIV meds become just a part of your daily routine. But right now, it's game time.

You are going to be ok, I started lower than you, and sick. Many of here did as well. I won't paint roses for you, it's a fight, and you need to think about it that way for a couple years probably. You and the bug. You have the weapons to beat it down.

Take the day off, go home, chill out for the weekend. Go for a walk. Wrap your head around this.

Blow your mind or are you ok right now?

[paintedroom]

Head deep fried.Other than fatigue I'm ok.Nurse said kidneys,liver etc all good.no hep c ,syphilis etc.maybe single sarcoma upper body.
Understood it was aids defining although nurse said they don't use that phrase anymore.

Now just freaked out I'm going spiral downwards quick.nobody knows..haven't disclosed to family etc.
Apologies for bullets Zach..and thank you.sending from phone.

[Wade]

Echo what Zach has already said.
I want to add many on here were diagnosed on their death beds with lower CD4s
than that , me included.  Your starting treatment on Monday and your not sick so your life will go on as it is now only you will be getting better everyday.

So in a nut shell what does this mean ?
You will be taking meds and will a normal productive life

[zach]

dont apologize anymore ok, just type, we'll work it out

words and phrases come and go, in the absence of an OI they may not be giving you a diagnosis of AIDS... that's cool, really, that's cool

listen, don't worry about maybes, focus on where you're at and what your next step is... there are a lot of maybes, and my experience with this even the worst of has happened to me was never what i thought was coming

you're going to go on meds, the meds work, you're not going to go into a quick downward spiral... that's just not how this works... and we do know that

chill on disclosing, don't rush to that, think about that later ok

[paintedroom]

Can't thank you guys enough.
Have to return work now.
Undoubtedly back later or before Monday

[DANIELtakashi]

My cd4 was at 61 when l fainted not being able to breathe.
Now l am back at my fulltime work.  Take care.

So excited to see the English expression in a nutshell in Wade 's message.
That is what l learned when l was staying in Minnesota many years ago.
Paintedroom, l am not a native speaker of English.

[Jim Allen]

Indeed, I can only echo what the others have posted.
Its a bit of a head wrecker but you will be grand.

Jim   

[paintedroom]

Pretty nutty work day -Howling into the void/gracious and sober deference/i have aids,i have aids,i have aids.

I`m grateful for your patience.I understand of course that those experienced contributors here may find some of this a little irritating having heard it all before many times .. some fugitive questions remain -
when you talk about fight,what do you mean ? Do you mean the mental and psychological stress or more the  biological fight -drugs not working,OI`s,side effects ? I understand the imperatives of communicating the positives but a little vinegar is ok too.

Has anybody else here had very low cd4(mine 54) and still been ostensibly well ? Just hard to reconcile this one.Would love to hear from someone on this.

Finally,when people talk about long term damage to their immune system,what do they mean ?

I`ll stop fussing after this.I know you just have to wait and see.Its just new and some of the comments seem almost blithe in their you will be fine.No rudeness or meanness intended.I`m very grateful for everything here.

[zach]

my cd4 at diagnosis was 8. the fight i mean is the bureaucracy of whatever medical system you live under, the challenge of getting on meds and accessing them on time, the stigma that you will fight both in yourself and in others, the new normal of taking meds every day, getting yourself to the doctor for regular labs, the nerves of waiting for the results, or trying to see too much in the numbers, yes i mean the mental stresses.

the meds work, that is not what i mean. the side effects are usually rare, mild, and temporary, those aren't what i mean either.

long term damage? your nadir is 54, but you have not had any OIs... long term damage may well be unlikely for you. you aren't standing on that bridge now, cross it if you have to.

i fully expect, and i think you can look to the day... that you'll be undetectable within six months, and that your cd4 will rise markedly. within two years you'll be practiced at fighting the bug, it will be a routine.

here is my challenge to you in the short term... don't stress about things that you aren't experiencing. focus on where you are now, and what your next step is. keep it together.

blithe or not... i say this with confidence, you will be fine.

[Ptrk3]

There are many people with low CD4 counts and are "well;" i.e., don't have opportunistic infections.  There are also people who have CD4's in the "normal" range who do have opportunistic infections.  The HIV is a very tricky and individual virus.

This is why, in the United States, aids is defined as having CD4's under 200 and/or an aids-defining opportunistic infection.  An ostensibly "healthy" person with CD4's of 199 and someone with CD4's of 500 with karposi sarcoma both have aids, per the U.S. Center for Disease Control (CDC) definition in the United States.  The definition may be different in Ireland.

Don't get hung up on the word "aids", though, of course, it is a shock.  In the United States, these days, it is used primarily for surveillance purposes, for the CDC to track and allocate financial resources and the like.  In practicality, it's not used much clinically these days (people are simply HIV positive).

In answer to your question, I was diagnosed in hospital with pneumocystis pneumonia (PCP) and CD4's of nine (viral load of 111,000)--so I met the definition of aids both ways--almost three years ago.  However, I didn't feel ill until about a week before I was diagnosed, so I obviously had low CD4's for some time before I was ill and I felt well.  For all I know I could have met the CD4 definition of aids for more than a year (or even years) before I fell ill, and felt absolutely fine.  In terms of CD4's, it's not just the quantity that keeps opportunistic infections away, it's also the quality.

Anyway, I started taking Atripla in hospital, was undetectable in about three weeks and back at work full time in less than a month, when my CD4's were 64.  I have not been ill since.  I remain undetectable and, at last count, my CD4's were 260.

I presume you will be on medication as soon as practicable.  Adhere to your meds, get to undetectable, and your CD4's will rise.

You are fortunate not to have had any illness and once you are on meds, it is unlikely that you will have any because in addition to retroviral-suppression medication, you likely will also be put on prophylactic medications such as Bactrim (to keep PCP away) until your CD4's rise above 200.

Don't worry about what long-term damage to the immune system means.  I'm not sure what it means, other than it may take a while for your CD4's to rise to level above 200 and higher.  Again, it's the quality of the CD4's, not the quantity that matters more.  It may also depend upon how long you have been infected (and you may not be sure of the time of infection). Be concerned now about the things only you can control.

It's normal for you to fret at this stage, of course.  But be confident that by taking your meds you will be fine, so take them and go about living a long and healthy life.

I wish you the very best.

[paintedroom]

What can i say but thank you so much for your reply Ptrk3.

I`m absorbing it all despite the temptations of dread and panic.I don`t want to take up any more time with  the "Aids" short circuit in my noodle.Its time to banish the child and man up to the challenge.

The very best to you and yours.

[Ptrk3]

You're very welcome.  Give yourself some time to grieve (it's natural) and then move on with the rest of your life.

Once you are better, and that will be soon, keep active on these forums and help other "newbies" deal with things.  "Pay it forward," as they say.  In helping others, you will banish the demons in your "noodle."  It works for me and many others on this forum, and it will work for you, when you are ready.

[CaveyUK]

Pretty nutty work day -Howling into the void/gracious and sober deference/i have aids,i have aids,i have aids.

I bet. Shitty place to hear about the CD4 count.

when you talk about fight,what do you mean ? Do you mean the mental and psychological stress or more the  biological fight -drugs not working,OI`s,side effects ? I understand the imperatives of communicating the positives but a little vinegar is ok too.

There may be different takes on this, but here's mine.....

The fight is really purely mental. It's finding a way of wrapping your head around the diagnosis without veering towards despair. It's about strategising for the adjustments you may need to make in your life (although in the big scheme of things, these are small), and working out how to deal with things like disclosure, and who (and more importantly, who not) to disclose to.

Some find that fight harder than others, due to a range of factors. But it's something you will have to deal with in time.

The physical fight? Not so much. You take medication as prescribed. Your body takes care of all the rest. Yes it's good to get, and keep fit, stop smoking and all that stuff. But as far as a fight, given you are NOT suffering from an active debilitating OI, then it really is just a case of taking the tablets, and keeping your adherence up!

The debate about the use of the word 'AIDS' is endless and quite emotive. It crops up on here from time to time. Suffice to say that in the UK (so I suspect Ireland as well), the use of the word has decreased and is now only used if you are under 200 and have an 'AIDS defining condition. Again, we all have our takes on this. Me - I see AIDS as a syndrome - a collection of symptoms rather than a specific illness that occurs in the setting of extreme immune deficiency. Once you are on meds, you don't really need to concern yourself too much with all that as your virus will be suppressed and your immune system will be building up. Like others have said, before you know it you will be back in 'normal' range and fighting fit. Whilst you are still in the 'danger zone', CD4-wise, you will be taking prophylactic drugs to ward off things like PCP (and others - MAC?, I think whilst you are under 100) - all that is good news, by the way...I know it doesn't seem like it at the moment

Has anybody else here had very low cd4(mine 54) and still been ostensibly well ? Just hard to reconcile this one.Would love to hear from someone on this.

Many people start with extremely low CD4s...some in single digits and don't feel in the slightest bit ill. Some with higher counts get very poorly. CD4 is just a blood marker which reflects the strength of your immune system - a low count isn't a condition in itself, but it is a metric by which we know historically that serious AIDS related problems occur.

Even when CD4's increase well into normal range, they are not a factor as to how 'sick' someone gets. You may not be at risk of some of the more extreme nasties you are at risk of now, but you still get sick just like people without HIV do. Once you are in this range, the CD4 count is largely irrelevant....some people with CD4's over 1000 have tons of health issues, others bump around someone in the 200-300 range and never have so much as a cold.

The important thing is you are now diagnosed and can do something about it. With the count you had, you wouldn't have needed much of an illness to deplete that immune system to a point where things become a hell of a lot tougher. Now you know, it's all about checking into club-med(s) and getting on with living your life. Which will be a long one, by the way...

Finally,when people talk about long term damage to their immune system,what do they mean ?

When the body rebuilds the immune system there can sometimes be lasting 'defects' due to the prior destruction which can potentially cause problems later on. This is by no means common, but it's why things like 'nadir CD4' gets mentioned, as does existence of OI's at point of diagnosis - as some of these can really do a number on people which takes a long time to recover from. Your count is really low which is bad BUT you are not laying on your deathbed with multiple OI's which is a really GOOD thing.

The other thing that often gets mentioned is low-level inflammation, which is a problem we all face even when UD on meds with high CD4s. This is largely due to pockets of latent virus (called reservoirs) which continue to replicate slowly even when suppressed in the bloodstream. The reservoirs don't cause an issue in terms of immune system damage, as long as meds are maintained - but there are theories that they continue to trigger a low-level immune reaction (inflammation) which can bring some issues related with ageing - such as heart disease, mental, bone issues etc on, a little earlier than the general population. The good news is that this is where a lot of current research is focused as the same research will feed into possibilities about cures/long-term suppression. And anyway, all these ageing issues are usually pretty treatable when (if) you ever have to deal with them.

(Sidenote : Folk living much longer now with HIV contribute to the above problems too!)

I`ll stop fussing after this.I know you just have to wait and see.Its just new and some of the comments seem almost blithe in their you will be fine.No rudeness or meanness intended.I`m very grateful for everything here.

You really WILL be fine. It seems crazy, I know - after being brought up with the horror of AIDS being so high profile over the decades. But medication has come on so far now - it's tolerable with few (if any) side effects for most, will allow you to live a normal (or near-normal) lifespan and nowadays we also know that when you are undetectable - which will be within months - you can no longer transmit the virus sexually.

I know it all sounds like sugar-coated pacifying for the newly diagnosed, but believe me - the folk here don't mince their words when they need to. So it really is true.

Best of luck, and continue to ask any questions you have

[paintedroom]

Thank you so much for such a comprehensive reply Cavey,it`s an enormous help.
I have read your comment closely but am somewhat brainscrammbled after a long,trying and entirely unreal day.I have to work tomorrow so its off to bed for me now.

I hope YOU are well and cant express my gratitude to you and others here enough.Such rarefied air brings out the finest in people.

Sleep well.

[CaveyUK]

Thank you so much for such a comprehensive reply Cavey,it`s an enormous help.
I have read your comment closely but am somewhat brainscrammbled after a long,trying and entirely unreal day.I have to work tomorrow so its off to bed for me now.

I hope YOU are well and cant express my gratitude to you and others here enough.Such rarefied air brings out the finest in people.

Sleep well.

Yup - It's a ton of stuff to take in, so relax and don't try to take it all in at once.

The good thing is this forum isn't going anywhere, and all the posts and advice (to you and others) will be here when you have a clearer head. As will we all be.

[paintedroom]

My cd4 was at 61 when l fainted not being able to breathe.
Now l am back at my fulltime work.  Take care.

So excited to see the English expression in a nutshell in Wade 's message.
That is what l learned when l was staying in Minnesota many years ago.
Paintedroom, l am not a native speaker of English.

Hi Daniel,
I wonder can i ask you how long it took you to get back to work from your cd4 of 61.What was your actual cd4 when you went back ?

Many thanks, P

[DANIELtakashi]

Hi.
I was in hospital for a month and then my cd4 count rose to 220.
One week after that l went back to work.  Just one month and one week.

You have no symptoms of  any Ols, do you?

[paintedroom]

Hi.
I was in hospital for a month and then my cd4 count rose to 220.
One week after that l went back to work.  Just one month and one week.

You have no symptoms of  any Ols, do you?

No symptoms other than a possible single kaposi sarcoma(upper body).I haven`t seen a Doctor yet and nurse wasn`t sure about that.I see the doctor monday.

I feel you might be younger than me.I`m 51.I imagine that plays a role.Would you mind if i asked you your age ?

[DANIELtakashi]

I am 51 years ago.
I got ill two years ago, at the age of 49.
I am older than you.

[paintedroom]

I am 51 years ago.
I got ill two years ago, at the age of 49.
I am older than you.

Thank you Daniel.

[zach]

Don't put too much stock into your CD4, it's just a number, it does not define you or your illness.

It's just a number that you track on your labs, on a practical level the only thing it's going to tell you is when you can stop taking prophylaxis antibiotics.

It's tempting for newly diagnosed people to wrap everything up in their numbers, but it's not really the reality of what you're going to experience.

I promise you, you're going to amazed how quickly meds will get you back in line. I know it's hard to believe that now, you're going to have to see it happen, until then it's just words I'm typing on a screen.

[DANIELtakashi]

How long do you have to wait to see your doctor ?

[paintedroom]

Needles to say when new to this am needy as hell and want to hug everyone with gratitude.But i will stop for the purposes of continuity.

I will see Doc on monday.They start me on 4x 1 per day including antibiotic until they see what my viral loads are.Then something more custom and the antibiotic.

i go from being a diamond encrusted lizard holding the cracks of the universe together..to affected ambivalence.It`s bloody murder.Distractions,distractions.