POZ Community Forums

Main Forums => I Just Tested Poz => Topic started by: everythingandnothing on April 14, 2014, 07:40:50 pm

Title: Recently diagnosed... anxiety
Post by: everythingandnothing on April 14, 2014, 07:40:50 pm
Dear all,

First of all, glad to have found this forum, with such a scary disease it seems difficult to get clear honest information sometimes which can only encourage anxiety and the feeling that this is something you're handling alone.

I'm 24, diagnosed around a month ago in the UK. When I was diagnosed, it was because I went to the clinic with what I thought were mouth ulcers, and I neverless got scared thinking it was acute HIV. Well I suppose I should be glad I went.

I have had two blood tests, each with CD4 counts of around 220. The second one just 2 weeks after, the CD4 had declined by 1 or 2, and my viral load slightly increased as well. It was such a shock and shame to get the second result, as in my head I was convinced my mouth ulcer symptoms were acute HIV and so I was expecting the second result to show a vast improvement as my condition stabalized. I now realise that slightly over a year ago I had what I thought was a terrible throat infection whilst living in another country and that in fact this was probably the acute infection, as I felt many other common symptoms, incredible malaise, myalgia, vomiting and generally feeling awful.

I am an educated gay guy which has allowed me to cope quite well with the diagnosis, I know that for most people, HIV gives a near normal life expectancy. Since diagnosis, I've only cried two or three times, and one was for thanks to science after reading a HIV patient's reflection that had he been diagnosed a couple of decades ago he might be planning his own funeral, but thanks to ART he was now able to live a normal life.

I have already started ART therapy, and since starting treatment I've began to feel more anxious. I don't understand some things. Is there a chance I won't respond to treatment at all? I read everywhere that starting treatment below 350 is a bad thing... but I don't understand why? Is my life expectancy lower, or will it mean my immune system never repairs, or that the drugs won't work? Though I tell myself I'm likely to be fine, for the first time I am beginning to feel overwhelmed by thoughts about the illness during the day.

I've been taking my drugs now for 3 days and apart from a very mild tingling or stomach churn, I don't feel any side effects. Is this normal?

Finally, I'm really worried because I've received oral sex in recent months. I didn't even finish, it was just some mild foreplay, but the person involved is so close to me and lives with hepatitis B, I'm not sure how I could live with myself if he got infected as a result of me. I suppose I want reassurance that it really would be a very low risk, but my viral load at the time would have been high....

My only wish is to outlive my parents, I can't stand the thought of them knowing that I have this infection, and knowing how it would destroy them. I have chosen not to tell anyone about diagnosis yet, and am looking for support here. I feel so lucky to be born at a time when treatment exists, so stupid knowing this diagnosis was totally avoidable. I feel impressed my own strength, knowing something like this would have destroyed me in earlier years when I was such a weaker person psychologically, but I do feel really alone. I have so many things I still want to do, and it feels like just as my future was opening out in front of me suddenly the floor's fell out beneath me.

Sorry for the long, silly post. Expressing myself this way makes me feel better, but answers to my questions would be really appreciated. Thankyou
Title: Re: Recently diagnosed... anxiety
Post by: zach on April 14, 2014, 10:54:59 pm
hey man, welcome here, sorry about your dx, you're gonna be ok. the only doors closing are the ones you slam. your numbers aren't fantastic, but there are a really decent starting point, and thats the way to look at all this you're about to go through. as the start, its not the end man, its a long run still. one lab here or there is like a snap shot, looking at the trends of those numbers over the course of a year, or more, is what really tells the story

personally, i support you not disclosing... 100%, some will disagree, that is a deeply personal choice. and use this board for as much support as we can offer. but try to reach out in some way for the human touch in all this. the first hug from another pozzie is powerful healing. you are not alone.

and you didn't infect your buddy through any type of oral sex. giving or taking, swallowed or not, regardless of his hep status. that is absolutely not a risk. just appreciate the blow job you got, put that out of your mind, and face your next step.

far as the length of your post, man ramble all you need. sometimes i drunk post pages and pages of stuff i don't even really want folk to read, i just need it out of my head. if i'm on narcotic type meds, i usually put a disclaimer at the start. or just move my hands to the right a couple places and type away, thats always fun to go back to in the light of the morning.

and one thing, and this is just me talking, but i think it should be beaten into all newly diagnosed. don't try to become an overnight internet expert. it will drive you insane. theres too much, and too much is out of date, or just plain bull out there. just learn to cope for awhile. you are managed now. everything is going to be ok. nothing about your condition is going to change on dime, tomorrow. you have time.

there are quite a few brits on this board, and you actually speak english, i don't know what sort of gibberish they spout sometimes but i just don't understand it

as we say here in the south... lean back. just take it slow and easy.
Title: Re: Recently diagnosed... anxiety
Post by: pittman on April 14, 2014, 11:33:28 pm
Welcome to the forums. I've found them helpful for the outreach and  information. I  hope you do as well.

Your cd4 count is about what mine was when I was diagnosed. While sooner treatment is generally better, your numbers are not worth worrying about now. You are still above the range where opportunitic infections are prevalent, and you will probably find that your immune system build back up in the next year or so.

The lower your numbers, the longer it can take to build back up. Side effects can be more pronounced. There are several on here who started treatment on the verge of death with almost no functioning immune system.  Years later, they are still with us.

You really are still lucky to be that much ahead that you have less of a hill to climb to rebuild your immune system.

As far as lifespan, you have every rational reason to expect to be around for a normal amount of time.

Title: Re: Recently diagnosed... anxiety
Post by: everythingandnothing on April 15, 2014, 04:56:42 am
Thankyou for your kind replies, they are encouraging. I'm currently right in the middle of a masters and I have so much work to do over the next few weeks, so I figure its important to get a grip quick. It would be a shame if I let this diagnosis impact so much.

Title: Re: Recently diagnosed... anxiety
Post by: Ann on April 15, 2014, 05:44:33 am
Hi Every, welcome to the forums.


I've been taking my drugs now for 3 days and apart from a very mild tingling or stomach churn, I don't feel any side effects. Is this normal?


What meds are you on?

Any meds can temporarily cause stomach upset in the first week or so, and this generally subsides with time. Don't let not feeling any other side effects make you think they're not working - just be happy they're not impacting negatively on your life.


I have already started ART therapy, and since starting treatment I've began to feel more anxious. I don't understand some things. Is there a chance I won't respond to treatment at all? I read everywhere that starting treatment below 350 is a bad thing... but I don't understand why? Is my life expectancy lower, or will it mean my immune system never repairs, or that the drugs won't work? Though I tell myself I'm likely to be fine, for the first time I am beginning to feel overwhelmed by thoughts about the illness during the day.


Again, what meds are you on? If you are on Atripla, you need to be aware that the Sustiva component of that combo can cause CNS side effects and some of those effects can be psychological. You said you've only been on it three days, but many people have ultra-vivid dreams right from the beginning, so I don't see why a person couldn't start having compulsive thought patterns from the beginning either. If you are not on Atripla, ignore this bit. ;)

I'm also in the UK - kinda sorta. I live on the IoM (aka The Rock) but I travel to Liverpool for my hiv health care. Hiv care in the UK is pretty darn good, so please try to not worry too much. You're very likely in good hands.

I know you were advised above to not become an "internet expert" and he's right; googling hiv can lead you to some very outdated and sometimes just plain (and unnecessarily) scary places. So I'm going to give you two links to UK based websites where you can trust the information, and trust it to be up-to-date.

http://www.aidsmap.com/

http://i-base.info/

i-Base is particularly good for a newly diagnosed person. It's easy to read and the information is therefore easier to digest, and that's a plus at a time when your head may be all over the place.

This site also has some very good Lessons (http://www.aidsmeds.com/articles/Introduction_4702.shtml) and Drug Information (http://www.aidsmeds.com/list.shtml). 

Please don't think you have to learn everything all at once. You have the rest of your (long) life to learn the finer points. You'd be wise to mainly come to grips emotionally first.

Ann
Title: Re: Recently diagnosed... anxiety
Post by: mecch on April 15, 2014, 10:08:39 am
This is related to your worries about your oral sex partner.
First of all you mentioned your viral load might have been high. So don't you know your viral load from the tests after your diagnosis? What was it?

Secondly, doesn't sound like it was a risk for him.

Third, you do care for him, and you are worried about this little tension between you. You say you don't want to tell anyone, but what about telling him, as a starter?  Might take one thing off your mind.

Title: Re: Recently diagnosed... anxiety
Post by: Bizkits on April 15, 2014, 11:23:01 am
I feel akward saying "welcome", as I am fairly new here myself. I was as well diagnosed a little over a month ago and have had some time to let it sink in. Like you, though (I'm a tad bit older) I'm an educated gay guy that works in healthcare (RN). I have some great support at home and also feel so fortunate to have found this site; These people have a lot of good information and support here.

I have told a couple of my closest friends now, only my partner and best friend in the beginning. It really felt good to vent and be hugged and just let that big sigh of stress and tension out. But, for everyone, I'm sure it's different--it is hugely personal, as Zach said. It's your choice of course who to tell and not tell. I've been cautioned, though, once you speak, you can't take it back...so I'd say choose wisely and only when you're ready.

Best of luck to you in your masters, keep us posted!
Title: Re: Recently diagnosed... anxiety
Post by: zach on April 15, 2014, 12:57:26 pm
my thoughts on disclosure. you can't unring the bell. every person you tell, will tell two people, and so on, and exponentially in no time flat, everyone in a small town at least will know all your business. it may well be that most do it from a place of love and good intentions. but, it will grow, and get into places you may well not want it to be.
Title: Re: Recently diagnosed... anxiety
Post by: everythingandnothing on April 15, 2014, 05:01:40 pm
I suppose its a momentary panic that comes over me sometimes, the worst was a few days ago, just this belief that wow maybe I won't get better at all, the drugs won't work, and I'll die so early.

I feel that this fear is mostly irrational now, from what I understand it is very unlikely my drugs won't restore me to a point of good health for many many years.

For now at least, it is comfort enough for me to know there is someone that I could tell, should I feel the need to, a close friend. But I think as I've read somewhere else, I will feel stronger for knowing more about my health and mental wellbeing before sharing this with another person who will no doubt suddenly offload their own anxiety and fears for me. I won't tell that person who's close to me yet either, even though he's already got a chronic Hep-B infection.

I have found out my viral load, I know its high, but I don't remember the number exactly. That's just my personality, but I will be keeping an eye on my progress.

I'm on a three pill regime of Trivuda, darunavir and ritonavir.. I was put on these because I have had depression before so despite feeling well before treatment they were wary of atripla's psychiatric effects. It was dismissed quite quickly, I hope I have not signed myself up to three pills with extra liver problems as a result for no good reason.