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I'm SO scared!

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newbie76:
I started developing a sun allergy about 18 months ago. I never had any skin problem, but at first I didn't pay too much attention to this symptom. Later on I had an eye infection and more recently a gingivitis and recurring tongue ulcers.
In the last 2 weeks I felt as tired as I never felt before: I couldn't stand up, at work it was a nightmare and as soon as I got home I was crashing in bed but unable to sleep.
On the 25th of April I finally convinced myself that I had to take the test. I went with my boyfriend of 4 years and we both tested positive. He doesn't have any symptoms though.
My world just collapsed even though I already knew that there were strong signs that I could be positive. We walked back home and both cried and cried. I couldn't sleep all night.
Yesterday the second bad news: my cd4 count is 202. They gave me Septrin (Bactrim?) to prevent pneumonia and I need to go back in 2 days to start treatment.
With this antibiotic, does it mean that I am not allowed to drink alcohol anymore? I never drunk much but sometimes a glass of wine helps me to relax...
I guess I'm "lucky" that I live in London and I am going to one of the best clinics in Europe: I have great faith in the Doctors there, but I am very very scared.
Can someone tell me how bad a cd4 count of 202 really is? Please take it easy with me though as I am really frightened.
Thank you.

fuentecamacho:
Hi there,

First of all, I really feel for you right now. Nobody deserves to receive the bad news that you have recenlty received. In answer to your question, a cd4 count of 202 is nothing to panic about. I have friends who have had counts in the single figures FOR YEARS and they are ok. Some people have got down as low as zero cd4s, so please get this in perspective, 202 is on the lowish side, but will soon climb when your doctor puts you on HAART. Nowadays meds are far less toxic than those of old and are highly effective. In fact, people diagnosed now can pretty much expect to live a normal life span. So chin up and God bless,

Central79:
Hey Newbie

I'm really sorry that you've tested positive, but glad you've made your way here. It's a place where you can ask any question, and get a lot of support.

I'm in London too, I was diagnosed in January of last year. The first year of things is very tough - both emotionally, and in terms of needing to learn the things that you need to know in order to take care of yourself. But it will get easier, gradually. I hope that you and your bf can lean on each other and support each other through this - it's very important.

Your CD4 isn't great, but it isn't bad either. I'm not sure how much has been explained to you, but the CD4 cells are part of your immune system, and are the main target of HIV. Measuring the CD4 count gives doctors an idea of how much your immune system has been damaged by the virus. At the moment, the guidelines for the treatment of HIV say that drugs should start somewhere above 200 - the fact that you went and got tested before dropping below 200 is great, and means that you have a better chance of responding quickly to the medication that suppresses HIV - your CD4 will rise and your body will be able to fight infection.

The Bactrim is to stop you from catching a type of pneumonia called PCP (aka PJP) that affects HIV positive people with a CD4 less than 200. Once your CD4 is above 200 for a few months, and continues to climb, then you will be able to stop. It does interact with alcohol, so I would suggest drinking tentatively for the time being. A glass of wine is fine. The only antibiotic you should definitely not drink with is metronidazole.

It's natural to be scared and it will go on for a while. I've been diagnosed for 16 months now, and I still get the occasional flash of fear. Take time to experience all of these emotions and let it out - talk to your bf, your mates and if you need extra help then see what you can access through your clinic, GP or charities like the Terence Higgins Trust. Post on here and there are a lot of knowledgeable people that will give you support - there are quite a few of us here in London.

The prognosis for an HIV+ person is pretty good these days. It's no walk in the park - but you are not going to die anytime soon. The most encouraging Danish study I've read on the subject says that HIV, with the current medication, cuts about 11 years off your life - a 25-year-old diagnosed today can expect to live another 40 years, compared to 51 years for an HIV negative 25-year-old. Ten years ago the outlook for HIV+ people was transformed with HAART, which has gotten a lot better over time. There are massive amounts of research going on into HIV, and even studies aimed at trying to move towards eradicating it from the body. Take care of yourself, and I am confident that you'll be around for the cure.

All the best,

Matt.

newbie76:
Thank you for these answers. It really reassures me reading your posts and thinking that -perhaps- I am a bit overreacting.
The thing that bothers me the most right now is this lethargy. The doc explained that it's because my immune system is working at half of its capabilities and the fatigue will gradually go once the meds start working but it could take up to 2 months!

I cannot possibly take 2 months of this. People at work are starting to ask questions on why I look so weak. They all have an advice for me: "go to do more blood tests", "eat this and that", "probably it's just a virus" (!!!), ...

Going to work every day is becoming a challenge, and I only work part time! Is there anything that can be done for the fatigue until the meds will kick in? I am already taking supplements (vitamins, iron, folic acid, zinc, ...) but they don't seem to make much difference. I have always eaten a very healthy diet although lately -I have to admit- I have skipped many meals as I have been so anxyous and depressed.

Your advice is very much appreciated.

Central79:
Well - I think you pinpointed your own problem. You need to stop skipping meals.

Anxiety and depression by themselves will cause tiredness. Add into the equation that maybe you're not sleeping as well and you've got quite a nasty cocktail.

My CD4 count is fine, and I'm not on meds yet - but when I was diagnosed I just could not stay awake. I slept like anything. And it was great - it gave me a lot more emotional and physical resilance when I was getting over a nasty seroconversion. My advice to you would be the same - sleep as much as you need. If that means 12 hours a night, so what? It'll only be for a few months.

Basically, just husband your strength and look after yourself. If that isn't enough, and you're still waiting for the meds to work, then maybe you need to take some time off.

M.

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