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Author Topic: I'm SO scared!  (Read 3539 times)

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Offline newbie76

  • Member
  • Posts: 238
I'm SO scared!
« on: April 28, 2007, 05:01:00 AM »
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.
« Last Edit: April 28, 2007, 05:35:27 AM by newbie76 »
25th Apr 07: The worst day of my life
27th Apr 07: cd4 202 14%
30th Apr 07: cd4 126 18% VL 110000
19th May 07: Started Truvada/Sustiva
20th Jun 07: cd4 218 25% VL 435
13th Aug 07: cd4 374 20% VL 64
20th Dec 07: cd4 435 24% VL <50
20th Oct 08: cd4 725 31% VL <50
30th Nov 09: cd4 725 30% VL <50
01st Nov 10: cd4 755 33% VL<50
11th Nov 11: cd4 754 32% VL<50
01st May 12: cd4 864 40% VL<50
01st May 13: cd4 615 VL 609 :-/
14th May 13: VL <50

Offline fuentecamacho

  • member
  • Posts: 1
Re: I'm SO scared!
« Reply #1 on: April 28, 2007, 06:04:06 AM »
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,


Offline Central79

  • Member
  • Posts: 527
Re: I'm SO scared!
« Reply #2 on: April 28, 2007, 06:15:54 AM »
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.
Diagnosed January 2006
26/1/06 - 860 (22%), VL > 500,000
24/4/06 - 820 (24.6%), VL 158,000
13/7/06 - 840 (22%), VL 268,000
1/11/06 - 680 (21%), VL 93,100
29/1/07 - 1,020 (27.5%), VL 46,500
15/5/07 - 1,140 (22.8%), VL not done.
13/10/07 - 759 (23.2%), VL 170,000
6/11/07 - 630 (25%), VL 19,324
14/1/08 - 650 (21%), VL 16,192
15/4/08 - 590 (21%), VL 40, 832

Offline newbie76

  • Member
  • Posts: 238
Re: I'm SO scared!
« Reply #3 on: April 28, 2007, 06:29:19 AM »
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.
25th Apr 07: The worst day of my life
27th Apr 07: cd4 202 14%
30th Apr 07: cd4 126 18% VL 110000
19th May 07: Started Truvada/Sustiva
20th Jun 07: cd4 218 25% VL 435
13th Aug 07: cd4 374 20% VL 64
20th Dec 07: cd4 435 24% VL <50
20th Oct 08: cd4 725 31% VL <50
30th Nov 09: cd4 725 30% VL <50
01st Nov 10: cd4 755 33% VL<50
11th Nov 11: cd4 754 32% VL<50
01st May 12: cd4 864 40% VL<50
01st May 13: cd4 615 VL 609 :-/
14th May 13: VL <50

Offline Central79

  • Member
  • Posts: 527
Re: I'm SO scared!
« Reply #4 on: April 28, 2007, 07:32:22 AM »
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.
Diagnosed January 2006
26/1/06 - 860 (22%), VL > 500,000
24/4/06 - 820 (24.6%), VL 158,000
13/7/06 - 840 (22%), VL 268,000
1/11/06 - 680 (21%), VL 93,100
29/1/07 - 1,020 (27.5%), VL 46,500
15/5/07 - 1,140 (22.8%), VL not done.
13/10/07 - 759 (23.2%), VL 170,000
6/11/07 - 630 (25%), VL 19,324
14/1/08 - 650 (21%), VL 16,192
15/4/08 - 590 (21%), VL 40, 832

Offline milker

  • Member
  • Posts: 4,034
  • Protected phone sex
Re: I'm SO scared!
« Reply #5 on: April 28, 2007, 10:46:33 AM »
Hello newbie, welcome to the forums :)

Now you know the cause of your lethargy, you know where you stand, your CD4s are high enough for you to kick back. You just saved your life by taking the test, now there will be people around you that will make you and your bf get that energy back and look forward to a long life together. You can now take the "whew! the bus didn't hit me!" approach :D

You will have zillions of questions when you get more lab counts and eventually starting medication. Feel free to ask anything, there is no stupid question on here.

Milker (who does ask stupid questions)
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline xyahka

  • Member
  • Posts: 778
  • Dance together!! aha!! aha!! I like it!!
Re: I'm SO scared!
« Reply #6 on: April 28, 2007, 10:56:24 AM »
Hi man (or girl... i don't know), well newbie here too.. hey i know how you feel i was diagnosed 6 weeks ago. About feeling tired it goes away slowly if you watch out your meals and relax, take the time you have free to listen to your body and sleeps if it asks you. Try to eat fruits with C vitamin and also try to take short walks under sun light that helps for both, derpression and feeling weak. Keep up with meds and relax, things are not so bad.

As for myself i still don't know my cd4 (latin america here), but after relaxing i feel myself more calmed and i can go to work and have almost normal working days. At the beginning people also asked what was happening, and even were curious for what meds i was taking, but you don't have to answer their questions, you can tell them you have had some sort of stomach infection or anything. With the time you will recover and you will see none ever notice the difference ... in my work i sometimes find myself a bit sleepy now (i am not in Haart yet), but i joke with my friends about watching movies until late and other things. By the way, chocolate is good to rise your mood if you feel down, perhaps carry a bar with you so when you feel sleepy at work eat some, the fact that you processes something in your mouth takes the sleepy feeling away.

Plus, life will change but not a lot. If you look after yourself and follow meds you will see this is just something else in life but does not affect who you really are and who you want to be. Big hugs from sunny Ecuador
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline newbie76

  • Member
  • Posts: 238
Re: I'm SO scared!
« Reply #7 on: April 28, 2007, 02:36:25 PM »
Thank you once again for all your posts.

In my personal experience I think it works better to "fight" lethargy rather than succomb to it. When I feel fatigued I tried going out for a short walk and I actually woke up.

If I go to bed instead I get even more tired without actually being able to sleep; plus I start thinking of the future and worry so I sort of start going crazy really!

So from now on I think I'll try and be a bit more reactive to this tiredness (easier said than done!).

Monday I'll go back to the clinic: I will get my viral load results (it cannot be another bad news, can it?!?) and will meet my HIV doc for the 1st time. I have also asked for an appointment with a dietician as I am losing weight, although I put this down to the depression more than to HIV.

It's all so strange... About 6 weeks ago I was feeling more or less ok and now all of a sudden I can list at least 10 symptoms that affect me every day. It's really not easy!
« Last Edit: April 28, 2007, 02:39:16 PM by newbie76 »
25th Apr 07: The worst day of my life
27th Apr 07: cd4 202 14%
30th Apr 07: cd4 126 18% VL 110000
19th May 07: Started Truvada/Sustiva
20th Jun 07: cd4 218 25% VL 435
13th Aug 07: cd4 374 20% VL 64
20th Dec 07: cd4 435 24% VL <50
20th Oct 08: cd4 725 31% VL <50
30th Nov 09: cd4 725 30% VL <50
01st Nov 10: cd4 755 33% VL<50
11th Nov 11: cd4 754 32% VL<50
01st May 12: cd4 864 40% VL<50
01st May 13: cd4 615 VL 609 :-/
14th May 13: VL <50

Offline beefbud

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  • Posts: 117
  • just some flesh caught in this big broken machine"
    • cubster dot com
Re: I'm SO scared!
« Reply #8 on: April 28, 2007, 04:52:51 PM »
Chin up, I know its not easy and I am in the same boat with you.
Lethargic all the time, just never up to snuff so to speak.  Not necessarily tired but not energetic.  Its been that way for 2 months for me now but don't let that get YOU down.  I am running through LOTS of blood work at the moment as they are trying to pinpoint what exactly is going on other than the HIV.  They have put off any HIV treatments cuz they want me to be part of a study group which would push back any treatments another month. (my cd4's are 294 so really  not that much higher than where you are)

Once again chin up...someone commented in one of my posts that once they started meds everything started getting better.  The Viral load goes down, the CD4's start going up so it makes sense to me.  Its by no means a great place to be but I sympathize...one way I try to put things into perspective is if I can get out of bed its a good thing, if i can go for a walk its a good thing.  We are just not used to feeling so "icky" but I honestly feel its temporary, we are just needing a bit of outside help to take the control back that we feel we don't have right now...try to smile, try to laugh.
Take care
"first impressions are cheap auditions"

Offline zeb

  • Member
  • Posts: 172
Re: I'm SO scared!
« Reply #9 on: April 28, 2007, 05:33:51 PM »
Newbie,

I know exactly how you feel. sometimes I still feel sad and anxious. But we (so you too) will be fine! My doc says: "Zeb, you're not a washing machine, so no guarantees! But the chance you will get aids (infections etc) is almost zero. You wont die of aids and you will become an old man."

grtz
Zeb

 


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