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Author Topic: Recently tested posizive, and at a total lost for words  (Read 10605 times)

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Offline mbpoz6

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  • Posts: 82
Recently tested posizive, and at a total lost for words
« on: February 19, 2011, 07:13:31 PM »
Hi guys,

I just found this website randomly while Googling. I was recently tested positive at the end of January 2011. I feel very depressed lately and it's hard to focus at times. 

I'm STILL in the state of shock but at the same time trying to accept that fact that it's something I cannot change, or turn back the hands of time of. I have yet to receive my blood results, but once I have them I will post them for feedback/advice next steps. Though my body feels normal I haven't gotten sick (don't look sick either), I just don't know if the blood results may say otherwise (I should get my results next week or two weeks) since HIV is a very unpredictable infection.

I'm a 23 yr old single male and I feel like my world has ended already. My life is basically: I work full time, normal 9-5 office work, work out 3 times a week, generally eat well/healthy, non -smoker, occasional light drinker. With this recent diagnosis, I believe everything will slowly go downhill until there is nothing left of me and that really scares me. :(

I do have a lot of questions but not sure if I can ask them right away and I'm sure you guys are tired of people coming in here and asking the same questions on and on about life expectancy, the ability to have kids naturally, lipoatrophy, meds etc.   

Another thing I also beleive I have HPV. I have a bit of genital warts in my anal area. What Im scared most about that is anal cancer. I don't know how rare it is or which types of HPV strains cause it, if I can prevent the cancer from happening, if its treatable. etc...  Too many questions, but I don't even know where to start.


But I did skim this site a bit after finding it, and see that there are a lot of helpful, friendly, knowledgeable individuals on here so I'd think this would be a good place to start this "new life" as a HIV poz person. Please help.

Thanks,


Offline newt

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Re: Recently tested posizive, and at a total lost for words
« Reply #1 on: February 19, 2011, 07:38:24 PM »
Hello

Sorry to find you here

Ask away

- matt
"The object is to be a well patient, not a good patient"

Offline Rev. Moon

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Re: Recently tested posizive, and at a total lost for words
« Reply #2 on: February 19, 2011, 07:42:38 PM »
Hi MB,

Sorry about the diagnosis, but welcome aboard.

While it is understandable that you feel saddened by this diagnosis you don't need to panic or feel hopeless about your health and life.  For now you should not worry about things such a lipo or life expectancy.  Yes, HIV is quite  a serious matter, but it is not likely at all that you're going to die from it anytime soon.  The key thing is to get those numbers, address your present situation with a reliable HIV doctor, and take it from there.  For all we know meds may not be immediately necessary in your case, and when the moment comes you will have this place to ask whatever questions you have.  Focus on you and take it all one step at a time.  

As far as the anal warts are concerned, again, you don't need to panic.  This is something that can be handled.  No need to be thinking about the big "C" now, cause that is for sure not what is happening at this very moment.  Warts have happened to more people than you probably imagine, including some members of the forum.

Take it easy for now.  And feel free to ask, whatever the doubt or question may be; you will find lots of great people here with experience and knowledge.  You are going to be Ok.  

Best,

The Rev.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline mikeyb39

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Re: Recently tested posizive, and at a total lost for words
« Reply #3 on: February 19, 2011, 07:46:48 PM »
hi mppoz6,
welcome to the site, sorry about your recent diagnosis. but you will be fine. I just tested positive about 3 or 4 months ago.  I dont have a whole lot of advise to give since i'm dealing with the new diagnosis myself.  The one thing i can say is to try not to delve into things so quickly, take it slow and let your doctor guide you on what you need to do.  

As far as meds go, take a deep breath and wait on your blood work to come back and see how your numbers are as far as CD4 and Viral load, then you and your doctor can make a decision on when you want or need to start meds.  I decided to go ahead and start meds since my numbers were kinda low, I was kinda terrified, but honestly i havent had any major side effects myself. So don't be afraid to start meds if you need.  If you take care of yourself and take your meds properly then their is no reason you can't live a normal life expectancy.

mike
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline anniebc

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Re: Recently tested posizive, and at a total lost for words
« Reply #4 on: February 19, 2011, 07:57:07 PM »
Hi Mikey

This is my standard reply to those who have just found out their diagnosis...hope it helps a little.


Reaction to the results is difffernt for everyone, but over time you will find a way of coping with the virus that suits you and it might be quite differnt from how others deal with it.

No one here will ever tell you it's easy, it's ok to get angry or scared but don't let it take over your life, stress is natura,l it can actually help some of us get through certain situations, but excessive stress can cause you physical symptoms and can damage your immune system further, just find ways to manage any stress you may be feeling, learn to relax and listen to your body.
Along with HIV comes anxiety and one way of tackling this is through information, gaining confidence in yourself and making informed decisions about your future.

Support is very important and you can get this from a qualified ID doctor, family and friend that you trust and there are many support organizations out there...just make sure whoever you discuss this with is sympathetic, supportive and non judgmental about your HIV status.

Most important of all you have to remember that being HIV+ does not stop you from being the person you were before your dianosis.

Aroha
Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline mbpoz6

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Re: Recently tested posizive, and at a total lost for words
« Reply #5 on: February 19, 2011, 09:51:00 PM »
Thanks for the support guys, I really appreciate. My main concern is being able to maintain and stay as normal as possible though being positive. By "being normal", I mean in terms of continuing to go to work Monday-Friday as the years go on, not getting sick more often (I rarely get sick anyways but don't know if that may change now because of my diagnosis), no physical changes in my appearance, due to my infection or any medications which i may go on in the future, and probably my biggest goal, having kids (hopefully at least one kid by age 30) and just try to live as I was when I wasn't poz.

As far as the "kids" go, I know and read of the sperm washing but I can already tell that method is costly. I'm more-so interested in natural conception one day, and yes I have read the Swiss statement/similar statements and studies. I'm not too familiar with what the rates for infection are but would like some help with that as well.  I'm only 23 and I might be thinking way to ahead of myself right now and asking too many question, but I just want to know/plan for my future now and hope for the best so that I can achieve my goals. I'm done school, have a job, and the third piece of the puzzle for me is to at least start to raise a family within the next 6-7 years or so.

A few questions I do have though overall from my recent poz diagnosis though are:

LTNP? How rare are they? I don't know if I could possible be one yet but hos is one defined a LTNP?

What should I start OR stop doing based on my current lifestyle?

"Moon" said I should not be worrying about developing anal cancer... why should not be worried? Is it because of my age? Or recent diagnosis? Or something else?

What is the most pills one could take a day if currently on meds?


... I have a few more questions but kinda distracted right now and can't think of the rest of them lol.

Offline Rev. Moon

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Re: Recently tested posizive, and at a total lost for words
« Reply #6 on: February 19, 2011, 10:10:41 PM »

A few questions I do have though overall from my recent poz diagnosis though are:

LTNP? How rare are they? I don't know if I could possible be one yet but hos is one defined a LTNP?

What should I start OR stop doing based on my current lifestyle?

"Moon" said I should not be worrying about developing anal cancer... why should not be worried? Is it because of my age? Or recent diagnosis? Or something else?

What is the most pills one could take a day if currently on meds?


... I have a few more questions but kinda distracted right now and can't think of the rest of them lol.

1. About 1 in 100 HIV+ people may be a LNTP.  They are defined as people who are able to maintain low viral loads and higher CD4 cell counts without taking ARVs.  It is only natural for you as a newly diagnosed person to hope that you fall in this category (or in that of an "elite controller").  At this point only time and consistent blood-work tests of your viral load and CD4 will tell; don't dwell much on that notion.  As I stated, one step at a time.

2. Based on what you said you may not need to change much; continue working, exercise regularly, eat well, try to avoid excessive drinking or drugs, limit or avoid unnecessary stress, etc.  You need to treat your body right, regardless of your HIV status.  Life goes on.

3. I said "at this point."  People living with HIV do have to be concerned about HPV and other viruses, as we are more easily affected by them, especially if not on meds.  Definitely try to discuss them warts with a doc so that they get removed; from what I have heard/read they are not very comfortable and can become a major nuisance.

4. Some people take just one pill (consisting of three meds, one time a day), others take several pills depending on various issues (tolerance to certain meds and side effects, a strain of HIV that is resistant to a particular form of treatment, or simple personal choice).  Nowadays you have more (and better) options to fight this virus.  Your doctor will probably schedule you for some additional tests (genotype, phenotype) and based on them you will be able to discuss options.

As far as having kids, wait till the right moment.  You are young.  As I said before, focus on you for now.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline drewm

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Re: Recently tested posizive, and at a total lost for words
« Reply #7 on: February 19, 2011, 10:40:22 PM »
Sorry about your diagnoses. Try to take a deep breath and relax your mind a bit. I know thats easier said than done. Once you have your blood test results, you and your doctor can chart a course of action to tackle this bug. She is one mean bitch BUT she can be managed!

I was diagnosed last spring, in May, with a CD-4 (T) cell count of 8 and my viral load was a half million. I was one sick puppy. That diagnoses is AIDS, not HIV. Here I am eight months later, taking my meds with a CD-4 count of 323 and my viral load is down to 30. I am sharing this with you because I was scared shitless too. A lot of what I "thought" I knew about this disease has changed over the years. The treatment is much better, the side effects of the meds are comparatively not so bad and life does go on...it really does.

Keep an eye on yourself but try not to stress. That's honestly the last thing you need right now. Be ready to ask your doc all the questions on your mind. It's a good idea to start writing them down. Some of the folks here have been around a lot longer and can probably answer more specific questions you have.

All the best...
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX -  FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline mbpoz6

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  • Posts: 82
Re: Recently tested posizive, and at a total lost for words
« Reply #8 on: February 19, 2011, 11:34:54 PM »
Thanks for the quick and helpful responses guys... I will try to calm down and relax a bit but its hard because I'm still pretty new to this whole thing.... I guess as time goes on, I will accept it more and try my best to tone down the stress levels and depression.


Quick question though... In "drewm's" case, he had an AIDS diagnosis, due to his cd4 count being below 200, but now that its back up again (good to hear that drew), does he technically still have AIDS? Or is it reversed back to HIV? That's a bit confusing to me.

And how likely is it for someone to do everything right (eat well, adhere to their meds/vitamins if prescribed, exercise regularly, no smoking/drugs, and just live life etc), and never progress to AIDS?

Offline drewm

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Re: Recently tested posizive, and at a total lost for words
« Reply #9 on: February 20, 2011, 12:06:09 AM »
Quick question though... In "drewm's" case, he had an AIDS diagnosis, due to his cd4 count being below 200, but now that its back up again (good to hear that drew), does he technically still have AIDS? Or is it reversed back to HIV? That's a bit confusing to me.

The diagnoses of AIDS was because of the counts. Once you have the diagnoses of AIDS, technically, there is no turning back, however, with my present counts, CD-4 323 and VL at 30, my doc said we would not be starting meds yet if this were my initial set of numbers. Does that make sense? (This would be a diagnoses of HIV not AIDS.)



And how likely is it for someone to do everything right (eat well, adhere to their meds/vitamins if prescribed, exercise regularly, no smoking/drugs, and just live life etc), and never progress to AIDS?

I cannot answer this, hopefully someone will come along who can. Adherence to meds is very important and I take vitamins to help out my immune system. You are going to live life just fine. I know that seems crazy right now but it's just true, you'll do just fine. The current treatment for HIV can keep your numbers in check for quite some time and in my case, actually reverse them from AIDS to HIV levels.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX -  FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline klassykitty

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Re: Recently tested posizive, and at a total lost for words
« Reply #10 on: February 20, 2011, 12:29:00 AM »
This is for mbpoz6.  I am new at this computer stuff so please bear with me.  I was diagnosed exactly one month ago.  My CD4 is 38, and my viral load is 125,500.  The vampires at my doctors took more blood last week, so hopefully those numbers change.  While i am newly diagnosed, I have a friend that has had HIV for 20 years.  I agree with drewm, taking your medicine is important.  I started taking vitamins for the first time in my life.  The one thing one of the nurses told me is that it is a manageable disease.  I also found that getting depressed about it doesn't do any good.  If you find yourself getting depressed about it stop and smell the roses as the saying goes.  I take truvada and isentress, they make a little tired and my stomach a little upset, but not to bad.  Finding a support group is helpful, there are no support groups where I live.  I am lucky in the fact I have good support from my family, and the few friends that know about it.
How to handle stress like a dog:
If you can't eat it or play with it.....
then pee on it and walk away

Diagnosed 01-20-2011
01-23  CD4 32    VL 125,400
02-18        76     VL 189
03-14  no cd4 test done   VL-52
04-14   69  VL-UNDECTABLE  YEA!!
05-26   50  whoopsy  
06-27   71        %-7
08-15   64 WTF %-9 
10-16  80         %7  
2012  CD4  %Thing   VL-UD
01-18  87    7
04-18  93    8  
07-16  151  8         
10-18  83    9    VL-70
2013   CD4   %thing       VL-UD
01-28  121     9
04-24  148    11   
07-25  157    11   
10-22  185    13
2014   CD-4  %thing   VL-UD
02-07 201 YEA!!!!!!  12
06-03  205      12

Offline mbpoz6

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Re: Recently tested posizive, and at a total lost for words
« Reply #11 on: February 20, 2011, 02:29:31 AM »
Sorry to hear that Klassykitty.  It seems your doing better than me though. I sure your blood work results will look better when you see them next. It seems like your adhering to your meds well.

I haven't gotten my blood results yet, but I'm hoping for the good of course. If I do need to take meds, I have no problem with that and have no problem adhering to them daily at the same time (I'm not gonna like it, but it's not hard for me to take meds). It would be like brushing my teeth or showering. Something that I will daily do. Even with that said I will still keep and extra dose or two with me in pocket or bag if I go out something. The most I'd probably miss in a year is maybe one dose, and I even find that hard to believe.

Also, I already checked my insurance plan through work just in case, so paying for them is not a problem either at the moment, thank god. Adhering is not a problem at all. I just don't want to have bad results or develop AIDS, anal cancer, etc. or anything worse than the HIV that I already have.  That's enough on my back to carry, and don't want to carry anything else. And then of course having kids and being able to live a long, healthy normal life ahead of me is also a huge concern. All I want is the best possible living situation for myself for now and the future, now that I'm positive.... but HIV is very unpredictable so it's hard.

Offline Hellraiser

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Re: Recently tested posizive, and at a total lost for words
« Reply #12 on: February 20, 2011, 03:15:38 AM »
To answer one of your questions that was not answered earlier, an AIDS diagnosis once means you will always have an AIDS diagnosis, however this is most likely a relic of the time when there was no treatment.  So in essence once you had AIDS there was no climb back up only a slow downward spiral.

A lot of what I'm reading in your responses seems to be angst about the future.  This is quite normal amongst people who have just been diagnosed because it's this whole new world of fear that any moment something could go terribly wrong.  The best thing you can do right now is try to stop focusing on the HIV so much and get back to thinking about the other things that were important to you pre-diagnosis.  It is a natural anxiety that overcomes everyone as they realize they now have some new burden to carry for the rest of their life, but eventually a time will come when your world will begin to return to normal.  Each day you wake up and go to work and survive will be more reinforcement to the fact that very little will have changed.  As for potential future complications by all means you should be checked for them, but trying to anticipate them or worry about what might happen will you drive you absolutely insane.  Here's to hoping you can learn to relax again sooner rather than later.

Offline mbpoz6

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Re: Recently tested posizive, and at a total lost for words
« Reply #13 on: February 20, 2011, 09:44:26 AM »
To answer one of your questions that was not answered earlier, an AIDS diagnosis once means you will always have an AIDS diagnosis, however this is most likely a relic of the time when there was no treatment.  So in essence once you had AIDS there was no climb back up only a slow downward spiral.

A lot of what I'm reading in your responses seems to be angst about the future.  This is quite normal amongst people who have just been diagnosed because it's this whole new world of fear that any moment something could go terribly wrong.  The best thing you can do right now is try to stop focusing on the HIV so much and get back to thinking about the other things that were important to you pre-diagnosis.  It is a natural anxiety that overcomes everyone as they realize they now have some new burden to carry for the rest of their life, but eventually a time will come when your world will begin to return to normal.  Each day you wake up and go to work and survive will be more reinforcement to the fact that very little will have changed.  As for potential future complications by all means you should be checked for them, but trying to anticipate them or worry about what might happen will you drive you absolutely insane.  Here's to hoping you can learn to relax again sooner rather than later.

Thanks for the response Hellraiser. Now when you said: "So in essence once you had AIDS there was no climb back up only a slow downward spiral"... I suppose you are speaking in the past and how it "used to be" when there was no treatment, or is it still the case today that once your diagnosed with AIDS, but go on to be better as time goes on with results, you sill "have AIDS"?  I'm confused lol.

And I do know I am thinking ahead too much, but that's how I always think for some reason. Don't know why but I'm always thinking what's the "worst that can happen". 

Offline Miss Philicia

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Re: Recently tested posizive, and at a total lost for words
« Reply #14 on: February 20, 2011, 10:23:00 AM »
Actually an AIDS diagnosis is, mostly, used for statistical purposes with CDC tracking and it also figures into Ryan White funding (I think) the thinking being that such patients are, at least initially, more expensive to treat.  So on that count it's not really relevant to the individual patient once their numbers improve, other than the patient allowing it to fester psychologically which isn't useful.

On the other hand there are ample studies showing that the lower one's nadir (meaning your lowest cd4 reading ever on file) does reflect long term outcomes statistically in terms of health (OIs, that sort of thing) and I think also the ability to get your cd4s up higher.  So, for example, there's a difference in having a nadir of 175 and having one of 4, in terms of where you may find yourself five years down the road.  I emphasize "may" as obviously it's not a given for each patient, just a greater likelihood.

I had an AIDS diagnosis 18 years ago with a nadir of something like 160, and my cd4 count is currently ~1300.  However, I have friends diagnosed a similar time who had nadirs of, say, 4 who have never been able to get higher than 400. 
"I’ve slept with enough men to know that I’m not gay"

Offline mbpoz6

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Re: Recently tested posizive, and at a total lost for words
« Reply #15 on: February 20, 2011, 10:54:28 AM »
Actually an AIDS diagnosis is, mostly, used for statistical purposes with CDC tracking and it also figures into Ryan White funding (I think) the thinking being that such patients are, at least initially, more expensive to treat.  So on that count it's not really relevant to the individual patient once their numbers improve, other than the patient allowing it to fester psychologically which isn't useful.

On the other hand there are ample studies showing that the lower one's nadir (meaning your lowest cd4 reading ever on file) does reflect long term outcomes statistically in terms of health (OIs, that sort of thing) and I think also the ability to get your cd4s up higher.  So, for example, there's a difference in having a nadir of 175 and having one of 4, in terms of where you may find yourself five years down the road.  I emphasize "may" as obviously it's not a given for each patient, just a greater likelihood.

I had an AIDS diagnosis 18 years ago with a nadir of something like 160, and my cd4 count is currently ~1300.  However, I have friends diagnosed a similar time who had nadirs of, say, 4 who have never been able to get higher than 400. 

Ohhhhh, now I understand it a little better.

And I guess it all depends your immune system/lifestyle as well which may effect your future number? That clears it up a bit for me. Depending on the person, I guess it's possible to never develop AIDS if your CD4 count never drops below 200 for example? I'm learning so much in so little time....


Offline Miss Philicia

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Re: Recently tested posizive, and at a total lost for words
« Reply #16 on: February 20, 2011, 11:10:04 AM »

And I guess it all depends your immune system/lifestyle as well which may effect your future number? That clears it up a bit for me. Depending on the person, I guess it's possible to never develop AIDS if your CD4 count never drops below 200 for example? I'm learning so much in so little time....


Oh, this "lifestyle" bullshit is a bit overplayed.  Obviously if you become a meth addict it makes it harder to pop pills on a regular basis, but at the same time getting plastered on mezcal once a month isn't going to kill you.  Looking at my own situation and how high my cd4s are, while I do not do a lot of any drug or alcohol currently (mostly because I'm 46 now) I certainly did my share of partying up until I was around 35.

Is it better to workout five times a week and put in place dietary changes?  Of course, but that goes for the general population.  It won't guarantee a greater increase in cd4s necessarily, but it will be good for decreasing other health issues (blood pressure as you age, etc.)  Does smoking increase or decrease your cd4 counts?  I smoke, so I'd say no.  But I should quit because it's not healthy in terms of other issues (in my defense I'm down to only 1/2 pack).  I remember once in the 90's snorting coke until 5 am and then going and having lab work done the next day and my numbers didn't shift... I was just curious about what it would do :)  But this wasn't something I did on a daily or even weekly basis.  My larger point is that you can do "things" in moderation -- you're not made of fragile china, though I'd add that as long as you're under 200 cd4s it's prudent to not mess around with things until you get your numbers up a bit.
"I’ve slept with enough men to know that I’m not gay"

Offline Ann

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Re: Recently tested posizive, and at a total lost for words
« Reply #17 on: February 20, 2011, 11:24:48 AM »

My larger point is that you can do "things" in moderation


All things in moderation, including moderation.
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Matt39

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  • Posts: 179
Re: Recently tested posizive, and at a total lost for words
« Reply #18 on: February 20, 2011, 11:38:06 AM »
Ohhhhh, now I understand it a little better.

And I guess it all depends your immune system/lifestyle as well which may effect your future number? That clears it up a bit for me. Depending on the person, I guess it's possible to never develop AIDS if your CD4 count never drops below 200 for example? I'm learning so much in so little time....



Hi mbpoz6

Sorry to hear about your diagnosis.

First thing - still not had your first blood test results back yet? If not it sounds like you are being made to wait inordinately long.

Let's clarify one thing - the two standard surrogate markers of CD4 number/percentage, and Viral Load are not, on their own the whole story - especially not for someone who is completely healthy in every other respect, unless of course they really are abysmally low for CD4/Percentage.

Your other blood tests are just as important - Liver, Kidney, Cholesterol, Blood Sugar and a few others.

The other thing to remember is that no two people have the same experience - as much as on the surface it may seem so.

There are *plenty* of people who have ongoing ill-health on CD4s of 500+/25%+, and those who have little or no ill-health on CD4s down in the 200s and lower even and percentage down at 8-12.

Forget any 'aids diagnosis' on CD4 numbers alone - its a pile of horse manure.

The most important thing for you is to know, or learn to be in close touch with, your actual health. How you really feel physiologically, how well you sleep, how enthusiastic you really are about the things, and people, in your life that make you happy and content. Stay close to them, or learn how to keep close to those things - they will help you manage stress, which is absolutely critical.

Reflect on your diet and exercise and, whatever anyone tells you, your *lifestyle* is as important, if not more, than before.

When/if you have your numbers, including all those other tests, and any incidences of *any* past illnesses you can remember, why not pop back and let us know?

Good luck and best wishes

Offline mbpoz6

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Re: Recently tested posizive, and at a total lost for words
« Reply #19 on: February 20, 2011, 01:18:33 PM »
Hi mbpoz6

Sorry to hear about your diagnosis.

First thing - still not had your first blood test results back yet? If not it sounds like you are being made to wait inordinately long.

Let's clarify one thing - the two standard surrogate markers of CD4 number/percentage, and Viral Load are not, on their own the whole story - especially not for someone who is completely healthy in every other respect, unless of course they really are abysmally low for CD4/Percentage.

Your other blood tests are just as important - Liver, Kidney, Cholesterol, Blood Sugar and a few others.

The other thing to remember is that no two people have the same experience - as much as on the surface it may seem so.

There are *plenty* of people who have ongoing ill-health on CD4s of 500+/25%+, and those who have little or no ill-health on CD4s down in the 200s and lower even and percentage down at 8-12.

Forget any 'aids diagnosis' on CD4 numbers alone - its a pile of horse manure.

The most important thing for you is to know, or learn to be in close touch with, your actual health. How you really feel physiologically, how well you sleep, how enthusiastic you really are about the things, and people, in your life that make you happy and content. Stay close to them, or learn how to keep close to those things - they will help you manage stress, which is absolutely critical.

Reflect on your diet and exercise and, whatever anyone tells you, your *lifestyle* is as important, if not more, than before.

When/if you have your numbers, including all those other tests, and any incidences of *any* past illnesses you can remember, why not pop back and let us know?

Good luck and best wishes


Hi Matt39. Thanks for the reply.

Well one dumb thing that happened was I went to get my results done on Feb 1 2011 (a few days after my diagnosis) at a clinic that my family doc/walk in clinic recommended, and when the results came in they forwarded to my HIV specialist that I recently was assigned to on the 11th or so. My HIV specialist called me and said "they did the wrong one". She said they did a  "hemoglobin" test. I'm not sure how they messed up when everything was clearly written on the requisition form (or maybe my family doc messed it up), so she did some good stuff for me and pulled some strings and got me in touch with another place where most of HER patients do their blood work close to her office and I got to do it on Feb 17 2011. I also did some other blood tests at the same time (blood sugar, testing for other diseases/infections etc) so a total of 9 blood tubes were taken from my left arm that day as "a new beginning" with my HIV specialist/doctor. So I hope to get all of the results within two weeks time. Hoping for the best, but you never know.

I'm trying to be more in touch and pay more attention to my lifestyle/eating habits. My lifestyle was never really "crazy" or "out of the ordinary" to begin with. It was fairly average and still it, but I'm trying to turn it up a notch a bit. I eat a bit junk food almost every day for lunch but I'm cutting that back.



Oh and thanks for the info Miss Philicia.

Offline drewm

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Re: Recently tested posizive, and at a total lost for words
« Reply #20 on: February 20, 2011, 02:48:15 PM »
All things in moderation, including moderation.

That's an oxymoron if I ever heard one but a very valid point. Thanks, Ann.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX -  FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline mbpoz6

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Re: Recently tested positive, and at a total lost for words
« Reply #21 on: February 24, 2011, 08:23:23 PM »
So I finally got my results (finally!!!), and my CD4 count was 280, and my VL was 45,000.  ???

I am sooooo scared right now, but my HIV specialist says I don't have to worry too much and the results are "not that bad" and could be better, but could have of been worse.  But the way I feel inside my mind is that I'm "close to dying" which I hope is not the case...

Now we are starting to discuss treatment, but she is waiting on a resistant test to get back and what we are focusing on is hopefully starting on Atripla within the coming weeks after a resistance test.  But what I'm contemplating is that she said there is a study that's going on right now around North America that "compares Atripla with a new HIV integrase inhibitor called GSK1349572". It's phase 3 of the study and it has just started wand will last 96 weeks.  I can decide if I want to be apart of it and the trial would cover my medication costs.

So there's a lot to think about right now and and in the coming weeks for me, so I'm really lost right now. Can you guys help guide in what I should be doing or what would be the better option for one that was recently diagnosed? I'm so lost and scared and just hope I can continue to live a normal healthy life. :)

I forgot to ask but I don't know how much my cd4 count results will drop, and VL will increase in the coming weeks while not on treatment and await for the resistant test.

Please help me out guys. Thanks!

Offline drewm

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Re: Recently tested posizive, and at a total lost for words
« Reply #22 on: February 24, 2011, 08:41:25 PM »
First set of numbers are not all that terrible, they could be worse. I know that's not much consolation and you are scared shit-less but don't be. Take a deep breath  :)

Atripla kicks ass. I went from a VL of 500,000 to 30 in 9 months. My CD-4 went from 8 to 323. Your CD4 count can vary for a lot of reasons, not just HIV. Your doc will likely focus on getting your VL down to an undetectable level. All of this takes time.

My suggestion is that in addition to your physical health, get some counseling. It helps to discuss all of this with someone face to face who can lend an ear.

When I was dxd I thought I was dying to. It was a scary time but I had a half dozen docs all telling me the same thing, "we can manage this...we can reverse these numbers." Although I felt like shit (in hospital with pneumonia) I never doubted them and they were right! Hang in there!
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX -  FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline geobee

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Re: Recently tested posizive, and at a total lost for words
« Reply #23 on: February 24, 2011, 08:59:57 PM »
Hi mbpoz6,

First, sorry about your diagnosis.  It's a hard piece of news to get.

My advice to you is to be kind and gentle to yourself.  Spend time (if possible) doing things you like to do, hanging with friends you like, eating the foods you like, etc.  There's a lot that your brain has to process right now -- take it easy and punt on the big life decisions for now if you can.

It'll get better.  Hang in there.  Fortunately, you've found a supportive forum here on AIDSMeds.

PS:  I started on Reyataz / Truvada / Norvir.  It has worked great for me.

Offline mbpoz6

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Re: Recently tested posizive, and at a total lost for words
« Reply #24 on: February 24, 2011, 09:34:21 PM »
Thanks for the responses drewm and geobee. I am taking it easy, and not stressing too much. Just hoping for the best..... My doc also said that Atripla "kicks ass", as well drewm and that it generally works for almost everyone and achieves good results. If I have to take it once a day,I dont mind that and dont have a problem adhering to it. I just hope that it works for me and there are little to no side effects if any. I can live with that until something better comes up in the future.

Do you guys know anything about current studies going on such as I one mentioned. I'm really hesitant to joining it and thinking about just trying out a Atripla description instead right now that my doc may prescribe.


Offline mikeyb39

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Re: Recently tested posizive, and at a total lost for words
« Reply #25 on: February 25, 2011, 01:18:44 AM »
I have to say Atripla has been good for me so far.  My VL ,when my first set of blood tests came back, was 591.000 and two months later went down to 800 and CD4 went up quite a bit.  I havent had any side effects so far really for the most part.  I take it before bed and wake up the next day not knowing i took anything.  i do tend to dream more and honestly it makes me hornier than i used to be for some reason.  I know that sounds odd, but someone else on here said the same thing.  Oh and dont take it right after you eat a heavy fat meal, you will pay for it trust me.  empty stomach is the way to go, so do you're eating at least two hours before bed.

I would do a clinical trial if any other proven medications weren't working, but as for me i prefer to wait till they are approved.  Buit i give kudos to those that do them.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline mbpoz6

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Re: Recently tested posizive, and at a total lost for words
« Reply #26 on: February 25, 2011, 12:09:46 PM »
Hi Mikey.  See, with what you are going through in terms being able to handle the Atripla with little to no side effects is what I'm hoping for. If I'm prescrbied it, I plan on taking it at night so I can sleep it off (planning 12-12:30am, and eating no later than 10pm), and wake up in a better mood/mindstate.

I was actually just thinking the same thing about the clinical trial. I don't wanna go on it and have soemthing go wrong since its not fully "approved" and still in the study stage. So I am kinda leaning towards starting Astripla instead.

p.s. = it says you started atripla in the year 2020 in your signature. lol.

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Recently tested posizive, and at a total lost for words
« Reply #27 on: February 25, 2011, 02:24:47 PM »
There was a write up when this clinical trial began a couple of weeks ago here:

http://www.aidsmeds.com/articles/ViiV_integrase_572_Trii_1667_19850.shtml

Quote
Clinical Trial of Triple-Drug Combination Pill 572-Trii Begins

ViiV Healthcare and Shionogi & Co. announced Thursday, February 3, that the first patient has been enrolled into a study exploring the safety and efficacy of 572-Trii, the companies’ fixed-dose combination pill containing the experimental integrase inhibitor S/GSK1349572 (S/GSK-572) and Epzicom (lamivudine plus abacavir).

“We are seeking to create an integrase-based, once-daily fixed-dose combination that helps meet patient needs,” says Dominique Limet, ViiV Healthcare’s chief executive officer. “We know that even with the successes of current therapies, patients still need additional treatment options, and we will continue to evaluate existing and pipeline compounds for new combination therapies.”

The international clinical trial, dubbed SINGLE, is a randomized and blinded two-arm study comparing once-daily 572-Trii with once-daily Atripla (efavirenz plus tenofovir and emtricitabine). The study will include about 800 people living with HIV who are starting antiretroviral therapy for the first time.

The primary objective for the SINGLE study will be to demonstrate the antiviral activity of 572-Trii, compared with Atripla, over 48 weeks. Secondary objectives include the assessment of the tolerability, long-term safety and antiviral and immunologic activity of 572-Trii once-daily, compared with Atripla, over 96 weeks. Investigators will also evaluate viral resistance in patients experiencing virologic failure.

To learn more about the study and enrollment sites, including one in Wilton Manors, Florida, click here.

You can read more about the integrase component (the actual new med now shortened in name to GSK-572) here:

http://www.aidsmeds.com/archive/GSK-572_2422.shtml
"I’ve slept with enough men to know that I’m not gay"

Offline mbpoz6

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Re: Recently tested posizive, and at a total lost for words
« Reply #28 on: February 26, 2011, 01:02:19 PM »
There was a write up when this clinical trial began a couple of weeks ago here:

http://www.aidsmeds.com/articles/ViiV_integrase_572_Trii_1667_19850.shtml

You can read more about the integrase component (the actual new med now shortened in name to GSK-572) here:

http://www.aidsmeds.com/archive/GSK-572_2422.shtml
Thanks Miss Philicia, I will have a look at those links.   :)

Offline creighton0123

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  • Posts: 3
Re: Recently tested posizive, and at a total lost for words
« Reply #29 on: March 07, 2011, 12:33:10 AM »
Although you should talk to your doctor about the visible warts, the general medical consensus is that strains of HPV that cause warts are not the same strains that cause an increased chance of anal, penile, or vaginal cancers.  Talk to your doctor about examining the lesions and confirming whether they're warts or hemorrhoidal tissue and put that issue to rest.  Doing that will most likely help you feel a little better about your health while you continue to adjust.

Offline Andy Velez

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  • Member
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Re: Recently tested posizive, and at a total lost for words
« Reply #30 on: March 07, 2011, 07:47:56 AM »
Creighton, you have not tested HIV positive. This Forum is only for those who are HIV postive.

Hopefully you will test negative. Although I am sure your intention is the best, the only forum in which you can post according to the rules of the site is AM I INFECTED.

Thanks for your cooperation and good luck with your test.
Andy Velez

Offline brenner

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  • Posts: 91
Re: Recently tested posizive, and at a total lost for words
« Reply #31 on: March 08, 2011, 09:07:44 AM »
hi there, i just found out myself last week.  i am scared too, but at the same time, i just have to keep on going.  i am probably going to start meds as of this week.  just trying now to educate myself, and deal with the situation.  its just that i have been diagnosed with kaposi sarcoma on my thigh...so we have to treat that as well...but lets face it...could be worse.  good luck, my dear.
Feb 23. 2011  poz diagnosed
Feb 28.  cd4 257, vl 262400, %21
Mar 14.  start Atripla
May 18.  cd4 639, vl 690, %33
Aug 19.  cd4 583, vl 60, %38
Nov 18.  cd4 450, vl UD, %38
2012
Feb.19   cd4 649, vl UD, %35
Jun 08.  cd4 524, vl UD, %34
Sep 16.  cd4 567, vl UD, %35
Dec 02.  cd4 592, vl UD, %35
2013
Mar 10.  cd4 688, vl UD, %35

Offline mbpoz6

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  • Posts: 82
Re: Recently tested posizive, and at a total lost for words
« Reply #32 on: March 11, 2011, 07:35:41 PM »
Thanks for the replies guys..... I really appreciate it.

Hi creighton0123. I did go for treatment for the anal warts recently and will go for follow ups in the coming weeks. The doc went in with a microscope or something, and said there is nothing serious "inside" at all and its just a few on the outside that he applied some podophyllin to. I am going to follow up again next week to see whats up. I think once they go away (If they do, and I hope they do) that I will follow ups annually just to make sure that everything is okay. He says its possible to early detect precancerous cells if they develop and treat them as long as I keep up to date and regularly follow up. But he says I shouldn't worry too much since anal cancer doesn't develop that fast. I'm only 23 and had the warts since Dec 2010 or so, so I should mainly focus on dealing with the warts for now and not anal cancer, since its rare and unlikely and the average age of developing a.c is 60 years old.


Hey there brenner. I just started treatment. Sorry to hear about your diagnosis. Hang in there and know that me as well as others on this site are here to support you. I educate myself everyday since I have been diagnosed. I should tone down the readings and stuff of HIV,  cause I don't want to overload my brain and worry about every little thing, but its hard since its still very new to me.  I'm just trying to take it each day at a time now.

I decided to go with Atripla and not go with that study for various reasons. I just took my very first Atripla last night. A bit of dizziness in the middle of the night when I got up to pee, and somewhat vivid dreams, but that's about it so far. I hope things get better and I adjust quickly. I also picked up some vitamin D and multi-vitamins today as well that I will start taking.

Do you know what treatment you will be starting brenner?

Offline brenner

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  • Posts: 91
Re: Recently tested posizive, and at a total lost for words
« Reply #33 on: March 13, 2011, 03:42:07 PM »
hi there...start atripla tomorrow...scared as hell about the dreams and hallucinations...but a small price to pay for health.  glad to hear that you are doing well...wanna pm me?  i am online.
Feb 23. 2011  poz diagnosed
Feb 28.  cd4 257, vl 262400, %21
Mar 14.  start Atripla
May 18.  cd4 639, vl 690, %33
Aug 19.  cd4 583, vl 60, %38
Nov 18.  cd4 450, vl UD, %38
2012
Feb.19   cd4 649, vl UD, %35
Jun 08.  cd4 524, vl UD, %34
Sep 16.  cd4 567, vl UD, %35
Dec 02.  cd4 592, vl UD, %35
2013
Mar 10.  cd4 688, vl UD, %35

Offline Buffalosad

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  • Posts: 11
Re: Recently tested posizive, and at a total lost for words
« Reply #34 on: March 22, 2011, 08:30:48 PM »
Hi there, I was kind of recently diagnosed -...well seems like yesterday in some way, but yet so far away at the same point. I was diagnosed in August, got my inital count in November. It was the longest time, and took longer for the "official positive reading".  My counts cd4  492, vl 27335.  I understand that these numbers look good, and I was only surprised by the vl. I was hoping for it to be lower, but at that time, we did nothing cuz the numbers were still good. 
We waited a short time and took more blood, its sort of being attacked by a vampire with all the tubes of blood they take.  Waited for results, which at the time seemed like an eternity. Due to weather issues my apt was cancelled the beginning of Feb, due to big storm heading.  My numbers than cd4: 439 and vl 80,891.  The big increase in vl hit me like a brick. I was devasted and felt beaten.
Talked about treatment and the different kinds of meds and the side effects. After discussing the options with my doc, whom by the way I am very comfortable and really love to pieces, decided to take blood and get the results in a week and she will call me with the results and if the vl was above 75,000. Meds will be started.  I have mixed emotions about this.  I have went to several support groups and had a hope that it would be years b4 meds would come into the picture. But than again...starting the meds was also me doing something about it and my way to fight back, cuz obviously my body was not helping me any on this point.
I got my results back and it jump up to 121,000 so meds have been started. I am still very sad and feel how did this happen to me,? I am talking to a counselor and it just takes time to feel good about yourself again, so that is what she says. I hope this happens soon.

Offline Buffalosad

  • Member
  • Posts: 11
Re: Recently tested posizive, and at a total lost for words
« Reply #35 on: March 22, 2011, 08:40:36 PM »
Sorry I just didnt say, I am on the Reyataz, Norvir, Truvada  treatment and its getting easier. I take it in the morning and have more episodes of nausea, but that is my only side effect.  Its been now 2 weeks and I go to the doctor tomorrow for them to take blood.   
Wish I would of known about this site earlier...seems like it really helps to talk about it to strangers and not those close to you.

Offline mbpoz6

  • Member
  • Posts: 82
Re: Recently tested posizive, and at a total lost for words
« Reply #36 on: March 26, 2011, 08:23:46 PM »
Hi there, I was kind of recently diagnosed -...well seems like yesterday in some way, but yet so far away at the same point. I was diagnosed in August, got my inital count in November. It was the longest time, and took longer for the "official positive reading".  My counts cd4  492, vl 27335.  I understand that these numbers look good, and I was only surprised by the vl. I was hoping for it to be lower, but at that time, we did nothing cuz the numbers were still good. 
We waited a short time and took more blood, its sort of being attacked by a vampire with all the tubes of blood they take.  Waited for results, which at the time seemed like an eternity. Due to weather issues my apt was cancelled the beginning of Feb, due to big storm heading.  My numbers than cd4: 439 and vl 80,891.  The big increase in vl hit me like a brick. I was devasted and felt beaten.
Talked about treatment and the different kinds of meds and the side effects. After discussing the options with my doc, whom by the way I am very comfortable and really love to pieces, decided to take blood and get the results in a week and she will call me with the results and if the vl was above 75,000. Meds will be started.  I have mixed emotions about this.  I have went to several support groups and had a hope that it would be years b4 meds would come into the picture. But than again...starting the meds was also me doing something about it and my way to fight back, cuz obviously my body was not helping me any on this point.
I got my results back and it jump up to 121,000 so meds have been started. I am still very sad and feel how did this happen to me,? I am talking to a counselor and it just takes time to feel good about yourself again, so that is what she says. I hope this happens soon.

Wow sorry to hear that man...didnt know the VL was jumping up so fast.... I got on VL test which was at 45k, and I decided to start meds right away. My doc said I dont have to, but it would be a good idea to start.

Me thinking the longer I just sit there and dont start meds, the numbers will get worse and worse, I decided to start atripla... Ive been on it for about 2  weeks so far and will go for my blood test in two weeks to see if atripla is working its magic.   I also decided to start because I knew that if I dont and my VL goes higher, it will take a longer time to bring it down once I start meds, so I decided to start it asap.....The earlier the better I guess?

Did your doc recommend atripla or did you chose which meds you wanted to take?

Offline TakingAChance

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  • Posts: 42
Re: Recently tested posizive, and at a total lost for words
« Reply #37 on: March 27, 2011, 06:35:53 AM »
Hi MbPoz6.
 Sorry you have to be hear, but you'll be glad you found this Forum. I'm newly poz as well. Tested in Jan, conclusive in Feb. My first blood test took a little long too. My numbers are 529CD4 and 5000 vl. My pheno test came back last Friday which was bad. The strain I have is resistant to many of the medications. But there are medications I will be able to take and will get the same results of lowering the viral load. Which is what I understand is the real priority. Tcells seem to have all different ranges. You sound like a well educated guy. I understand it's better to get om meds and knock it out from replicating then to wait for it to get further and further along in side you body. Hang in here and ask any questions you need to. This place has been a huge help to me. Don't let this HIVdiagnosis define Who you are and Want to be. You own it. It doesn't own you. You will find a lot of tools here to help you live out a long life. The Rest is up to you. Justin
Fasten Your Seat Belts...It's going to be a Bumpy Ride!

Offline mbpoz6

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  • Posts: 82
Re: Recently tested posizive, and at a total lost for words
« Reply #38 on: April 02, 2011, 07:22:22 PM »
Hi MbPoz6.
 Sorry you have to be hear, but you'll be glad you found this Forum. I'm newly poz as well. Tested in Jan, conclusive in Feb. My first blood test took a little long too. My numbers are 529CD4 and 5000 vl. My pheno test came back last Friday which was bad. The strain I have is resistant to many of the medications. But there are medications I will be able to take and will get the same results of lowering the viral load. Which is what I understand is the real priority. Tcells seem to have all different ranges. You sound like a well educated guy. I understand it's better to get om meds and knock it out from replicating then to wait for it to get further and further along in side you body. Hang in here and ask any questions you need to. This place has been a huge help to me. Don't let this HIV diagnosis define Who you are and Want to be. You own it. It doesn't own you. You will find a lot of tools here to help you live out a long life. The Rest is up to you. Justin

Hi Justin, sorry to hear about the resistance issues. Fortunately newer meds and better treatment options are coming soon. I just hope they come faster 'cause we aint getting any younger. lol

I have educated myself a lot lately.... I'm still in the state of shock though. One thing that I cant stop doing is thinking about it 24/7 and reading about hiv, research, studies, vaccines, new meds  etc. everyday.

I have started meds about 3 weeks ago (Atripla). The side effects seem to have worn off, though they were very minimal to being with. Just some light dizziness/hang over feel and that was pretty much it.

This forum seems very helpful though. I'm very happy to have found it. I still haven't told any family or friends and don't plan on doing so for various reasons, so in the meantime I can kinda get support from here when I'm not able to get the immediate support from fam/friends. So far I have actually handled this a bit better than I expected. Sometimes I'm in a good mood, and sometimes when I'm alone and think too much I get a bit depressed. I'm optimistic things will get better soon.
 
I hope my next tests show that my numbers are better.

Offline Buffalosad

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  • Posts: 11
Re: Recently tested posizive, and at a total lost for words
« Reply #39 on: June 11, 2011, 09:14:37 AM »
Sorry it has taken me so long to get back to you, I was hit with many emotions and just tried to not thank about it. The Doc decided on this set of meds based on my other complicated and depressing life, you might say. I am currently having no side effects and I can actually see life going on.  Stay strong and hope you are well.

 


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