Author Topic: moving from just poz to living with (Read 9323 times)

nycpoz · « **on:** July 24, 2009, 08:50:28 pm »

Hello everyone. I guess my denial period is over. I got HIV god knows how, and was on continuous denial phase believing my elisss and wb are lab errors. I got my VL and CD4 count on phone today. VL 26000 and CD4 count about 600. Since, I don't know when I got infected and can't say if this number is good or bad.

If say got infected in May and already VL is 26000 and CD4 is 600 (normal being 1000), does this mean I am not putting up very strong against the virus? Doctor said next test will be in Oct. What if my system crashes by that time? Isn't it a long time to establish trend that if my body is putting up any fight against the evil?

I asked him if I need to take any supplements he said no. He told me to go out today and have few drinks and relax. I have appointment with him next week. Any questions I should ask him in particular (other than my visa status:)........

I cried a lot in my office restroom today, as my bleak hope of lab error was gone. I am going out to meet some friends today. Hope I hold my self up !!!!

Warm regards to all.
H

Miss Philicia · « **Reply #1 on:** July 24, 2009, 10:24:48 pm »

Your lab numbers are fine like your doctor said. Consider yourself fortunate and go have that drink.

AboutToStart · « **Reply #2 on:** July 24, 2009, 10:28:01 pm »

Quote from: nycpoz on July 24, 2009, 08:50:28 pm

Any questions I should ask him in particular (other than my visa status:)........

your visa status is prolly the last thing to discuss with your DOCTOR.. a good immigrations lawyer might be more appropriate..

Miss Philicia · « **Reply #3 on:** July 24, 2009, 10:29:16 pm »

Go to the legal department at GMHC and discuss your status

http://www.gmhc.org/programs/legal.html

nycpoz · « **Reply #4 on:** July 24, 2009, 10:37:46 pm »

Thanks miss philicia. I tried !!! .. went out dinner with friends, and they kept asking why I am not smiling...
and I came back home... if this disease is not so deadly and it doesn't affect your day to day life then why it makes everyone so sad ?
I had a beautiful life, I want it back !! .. I have an invitation to a small party, will try going there for sometime. Sitting at home just makes me cry ..

nycpoz · « **Reply #5 on:** July 24, 2009, 10:38:51 pm »

I was trying to joke there abouttostart... guess wrong place and time... !!

madbrain · « **Reply #6 on:** July 25, 2009, 02:10:07 am »

Quote from: nycpoz on July 24, 2009, 08:50:28 pm

If say got infected in May and already VL is 26000 and CD4 is 600 (normal being 1000), does this mean I am not putting up very strong against the virus?

Actually, normal range for CD4 is 500 to 1600. You are still fine.

Quote

Doctor said next test will be in Oct. What if my system crashes by that time? Isn't it a long time to establish trend that if my body is putting up any fight against the evil?

3 months testing intervals are standard. With your numbers you are not in short-term danger.

skeebo1969 · « **Reply #7 on:** July 25, 2009, 03:16:58 am »

Quote from: nycpoz on July 24, 2009, 10:37:46 pm

Thanks miss philicia. I tried !!! .. went out dinner with friends, and they kept asking why I am not smiling...
and I came back home... if this disease is not so deadly and it doesn't affect your day to day life then why it makes everyone so sad ?
I had a beautiful life, I want it back !! .. I have an invitation to a small party, will try going there for sometime. Sitting at home just makes me cry ..

Dude after my diagnosis I pretty much went through the whole denial thing myself... very similar route to the one you took. I went to my very first doctor visit after my first blood draw just know Dr. Alena-Castro was going to tell me I was negative, didn't quite hear results I wanted and somehow heard that my Cd4's were 900 something only to later find out they was 268.

That having HIV solely on your mind will pass, well in my experience it did. I can remember thinking about HIV all the damn time...waking up, brushing my teeth, and even at the red light.. I would go to bed thinking about it and what really sucked was everyone else was just moving right along and here I was just trying to hang on to my sanity.. Like I said it takes time but you will gradually accept it. Knowledge is key and it helps relieve some of the anxiety you might be going through right now.. with credible information and a good doctor you will find that in time the other stuff that usually worried you will come back and in my opinion that kinda sucks if you think about it. Hmmmmm here we are with a virus that can potentially kill us and we're worried about what we don't have, but hey that's part of thenormalcy of life I guess and I am sure yours will come back to normal.

Just hang in there and welcome to the forums

AboutToStart · « **Reply #8 on:** July 25, 2009, 11:42:04 am »

I totally agree with skeebo1969 and you're definately at the RIGHT place (i.e. this forum). I've been Poz for a couple of years but I never bothered myself with it too much while my numbers were "good" and I could live a "normal" life. Until recently when CD4 started heading down and I decided (together with my Dr's WARM recommendation) to start Meds. I didn't know much about the meds, their side effects (good and bad) and about living in general "in the shadow" of all of this..
I turned to this forum and found great folks with lot's of experience that were willing to share and advise and help. That to me was a HUGE support and inspiration and sure helped me with my first steps in the Meds world..

Now, after completing my 2nd week on Atripla, I can say it ain't too bad at all. 2 advices I can give to you (or any other "beginner" for that matter):
1. Everybody's different!! Listening to other people's experience and input is educating and important but at the end of the day we all react/affected (emotionally and/or physically) different, so remember that and don't think that the worst is gonna happen to you just coz unfortunately it happened to someone else..
2. Take it one day at a time. It's impossible to learn/know everything at once and co-ope with all the aspects of your life in one day. Stressing out is definately not helpful so just try kick back some

Good Luck and Welcome!!

nycpoz · « **Reply #9 on:** July 25, 2009, 12:27:31 pm »

I think I am going through the same phase as you guys went through. It's just coming hard on me as I can not share this with my family, and I live alone. I hope at end of sometime, I will come out strong rather than weak. The worst part is morning when I can't stop thinking about this. I went out last night and felt normal and myself. But next morning it's the same feeling.

Madbrain - You have maintained cd4 levels very well. I saw your another post where you described the list of supplements you take everyday (a long list of pills). How did you come up with that regime? Do they have any side affects etc.? Did you see a nutritionist?

H

Inchlingblue · « **Reply #10 on:** July 25, 2009, 02:44:08 pm »

I found out August 2008 and my numbers were almost identical to yours, can't remember off the top of my head but very very close to what you have as far as CD4s and VL.

I've mentioned in other threads but will briefly re-iterate: I was experiencing a huge amount of anxiety due to the diagnosis and stressed myself out. This negatively impacted my immune system and I had a drop in CD4s after that first reading of about 620. They later stabilized but not to those same levels. I am not at all saying this to alarm you in any way (for the record I am doing great and decided to start meds exactly one week ago even though my numbers were still not bad).

My point is that as hard as it may be, it's for your own good to try to remain as calm as possible because, really, there's every reason to believe you will be fine and stressing out may only do you harm. One of the many things that happens when very stressed is the body releases high levels of cortisol, which is not good. Your numbers are still very decent.

At any rate, you'll want to see what the trend is with your numbers and not go by just one set. You asked about supplements, I'm like Madbrain, I take them. There are some I am continuing on after starting meds but there are some I was taking specifically before starting meds b/c there are theories that they help the immune system, specifically in controlling HIV (NAC and astragalus, these I stopped since starting meds but was taking them regularly after diagnosis).

Multivitamins w/ minerals, probiotics, Omega oils (especially Omega-3), Flax seed oil I take every day and still do (although not at the same time as I take the meds). I also take Calcium/D, selenium, vitamin E, lecithin, alpha lipoic acid, acetyl L-carnitine, B complex, resveratrol, Co Q-10, DMAE, these I take every 2 to 3 days, (again, not at the same time as the HIV meds). If you want to simplify it there are some very good supplements that come in one bottle and specifically target the immune system (I think K-pax is one, I've never used it but heard it's good).

I started on Isentress/Truvada and it's only been a week so I don't know what's going on as far as CD4s and VL but I'm not experiencing any side effects whatsoever so far (knock wood).

positivmat · « **Reply #11 on:** July 25, 2009, 02:56:30 pm »

Hey nycpoz, I have been poz for 6 months. I still think about it all the time, but I don't cry like I used to. That goes away after a while. Its not a bad idea to "use" the experience to your advantage and make yourself more mindful of all that you have in this life. We are lucky now in 2009 to have this when it is primarily a pill that you will have to take. Therapy is good if you need extra help for giving the experience meaning. Your numbers are awesome. You get to choose what you will do. I chose to medicate early with my high v/l and lower cd4. I am happy to do that to attack the virus early as well. Sorry to see you join the forum but I welcome you.
Matt

physicsguy · « **Reply #12 on:** July 25, 2009, 05:00:01 pm »

As others have said, those numbers are perfectly fine. As a pre-emptive attack against freaking out with your next numbers, keep in mind that fluctuations are normal - so don't panic if it drops a little.

madbrain · « **Reply #13 on:** July 25, 2009, 08:03:48 pm »

nycpoz,

Quote from: nycpoz on July 25, 2009, 12:27:31 pm

I think I am going through the same phase as you guys went through. It's just coming hard on me as I can not share this with my family, and I live alone. I hope at end of sometime, I will come out strong rather than weak. The worst part is morning when I can't stop thinking about this. I went out last night and felt normal and myself. But next morning it's the same feeling.

You should see somebody you can confide in - whether, it's a therapist, or a friend - sharing what's on your mind will help. I don't know the specifics about your family but perhaps there is a way you can come out about it too some day without being rejected. My family is very supportive fortunately, though I know not everybody's is.

Quote

Madbrain - You have maintained cd4 levels very well. I saw your another post where you described the list of supplements you take everyday (a long list of pills). How did you come up with that regime? Do they have any side affects etc.? Did you see a nutritionist?

Indeed, I have maintained good CD4 level over the last 3 years, and a low VL. I am not sure how much this good labwork is related to the supplements I take vs my good genes, however. I am currently in one study on HIV controllers, and in the process of enrolling in several others due to my very good viral control. None of the scientists running the studies care much about the supplements that I take - I have communicated the list to them. They only care that I am not on HAART, yet maintain low VL and stable CD4. That says to me that they don't put a lot of weight into the effect of the supplements on HIV. There is still limited research on the supplements and HIV. I can't be sure myself how much effect they have, but I do believe they have some.

I came up with my supplement list based on different things - some of the supplements were recommended by my doc based on conditions I have (eg. vitamin D for deficiency), some recommended for HIV (multi-vitamin), some by my psychiatrist (omega-3), and most of the others I take based on research papers I have read about their effect on HIV, and I take them with my doctor's approval. I did see a nutritionist too, but she has advised me mostly on food diet rather than supplements.

The main side effect of my large supplement regimen is gas so far. I take a gas-x twice a day, together with the supplements, to mitigate it. And I have to take the supplements with food. If I have a large meal, then there is less gas. On days that I eat less, I end up having to take more gas-x. If I ever skip a major meal, I skip the supplements too, otherwise a few hours later I will be sure to throw up. You never want to take a lot of supplement pills at one time on an empty stomach.

Ann · « **Reply #14 on:** July 25, 2009, 08:22:23 pm »

nycpoz,

I've moved your thread into the "I Just Tested Poz" forum because all of the concerns you bring up are those of someone newly diagnosed. These types of concerns are the very reason why we created this forum - and keeping these types of threads in the proper forum makes it easier for newly diagnosed people to find them and learn from them. Please keep these kind of thoughts in this forum. Thank you for your cooperation.

And by the way, welcome to the forums. You're going to be alright, no matter how it may feel right now. We've all been through this rollercoaster of emotions. Hang in there.

Ann

jay195 · « **Reply #15 on:** July 28, 2009, 10:56:34 am »

Hi ! This hiv thing just messes up your life if YOU let it ! You must focus on your life and your job and staying healthy and not dwell on this , at the end of the day worrying isn't going to get you anywhere and is a waste of time and energy. I firmly believe in " what will be will be " and also in mind over matter.There is so much in life to enjoy, don't let this bug get to you.Now there are good doctors and good meds so put your faith in them and please relax in to this and enjoy life.kiss

Victor09 · « **Reply #16 on:** July 28, 2009, 08:03:53 pm »

You case very similar with me. I had a hard time in my life. Let walk together in new life-style

Victor

nycpoz · « **Reply #17 on:** July 28, 2009, 09:16:24 pm »

Thank you guys. Jay, there is no doubt that it messes up your life, and it messes head more than any other part. I try hard everyday to move-on, and have come a long since 17th jul when I got the news. I try to be normal, but when I talk to my parents (who don't know about my medical condition) and when friends ask and talk about dating and relationships, the bad feeling shoots right into the middle of my heart.
I guess things will be fine eventually

.. I have already started dreaming about the expensive cure they will come up in next few years, may be the cost is 100k, and how I would take a bank loan to get rid of it

..

Victor- Yes we need to change the lifestyle, but how? What are significant changes you brought into your life? I am trying to eat healthy - green vegetables, fruits, I am not taking any supplements right now.

Victor09 · « **Reply #18 on:** July 29, 2009, 10:26:35 am »

Victor- Yes we need to change the lifestyle, but how? What are significant changes you brought into your life? I am trying to eat healthy - green vegetables, fruits, I am not taking any supplements right now.
==============================================================

nycpoz - Yeah you start to do a good things. and please take a long sleep too.Why not you try
multivitamin like me?

Victor

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Author Topic: moving from just poz to living with (Read 9323 times)