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Author Topic: Just tested postive and this forum has helped tremendously  (Read 13154 times)

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Offline Coolio_7

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  • Posts: 66
I just tested positive mid last month. Actually yesterday made a month.
When I got the news I was in shock and felt my life was over! Everything I had worked so hard for n my life was going to be take away. I didn't even know how to tell my partner. But I had to...and two days later he tested positive as well. I felt like I ruined not only my life but someone else's. He is accepted the news quite the opposite of what I expected. We are both tying to deal with this the best way we can.

But I finally registered after browsing the site and forums for the last month and the topics and the advice that I've seen especially on these forums have kept me going. I now realize that it's not a death sentence and scientists are now closer to a cure be it therapeutic or functional than they have ever been. I also have a lot to learn and I look forward to reading the wealth of information here on this site and forum.

I'm still waiting on the results of my phenotype blood test. I have another 2 weeks before I see my specialist and I am ready to start treatment. My t cell count was 333 and VL results hadn't gotten back to the doctor yet. So I'll know those numbers when I go back in 2 weeks. However, my t cell count is slightly below 350my doc said I came to him just in time. I don't even want to think about if I had waited a year longer what could have happened. But I'm just ready to start treatment now if I can so all these aches and pains can go away...(swollen lymph nodes with burning in the neck and chin area leading to constant ear aches for like almost a month...scary stuff seeing as though I hardly ever get sick).

But anyways let me stop rambling. I have so much going on in my mind since I've been diagnosed. I'm just glad I found this forum.

Offline emeraldize

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Re: Just tested postive and this forum has helped tremendously
« Reply #1 on: July 15, 2011, 04:40:49 PM »
Welcome Coolio!

Em

Offline Coolio_7

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Re: Just tested postive and this forum has helped tremendously
« Reply #2 on: July 15, 2011, 04:42:53 PM »
^^thank you.

Offline wolfter

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Re: Just tested postive and this forum has helped tremendously
« Reply #3 on: July 15, 2011, 05:15:59 PM »
Welcome to the forums.  This place is a great resource tool for all aspects of this disease.  Keep us posted and don't hesitate to ask questions or post concerns.

Greg
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Coolio_7

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Re: Just tested postive and this forum has helped tremendously
« Reply #4 on: July 15, 2011, 05:26:52 PM »
Thanks Greg. I'll definitely take advantage of all the resources here and keep you all posted as go the outcome of my next doctors visit. I hope my t cells count doesn't dip below 300 by then since a month would have passed. I want those numbers to get above 500 and stay that way.

Online Jeff G

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Re: Just tested postive and this forum has helped tremendously
« Reply #5 on: July 15, 2011, 05:42:30 PM »
Welcome to the forums . Jeff .

Offline spacebarsux

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Re: Just tested postive and this forum has helped tremendously
« Reply #6 on: July 17, 2011, 02:52:09 AM »
Sorry to hear about your (and your partner's) diagnosis.

I am sure things will start looking up for you very soon.

Welcome to the forums :).
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline Coolio_7

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Re: Just tested postive and this forum has helped tremendously
« Reply #7 on: July 25, 2011, 01:31:48 PM »
Ok so I see my ID doctor this week. And possibly will start treatment this weekend. Took a week off from work incase I have to deal with any wide effects.

But I just had a question...last month when I saw my doc he mentioned that based on my bloodwork my liver was normal but my kidney enzymes etc were slightly above normal. I asked him at that time what were the implications of that...and he said not to worry. Is this going to possibly affect what treatment my doc decides to put me on? Will he possibly not prescribe atripla?

Thanks again for all the advice and making me feel welcomen to these forums.

Ric

Offline emeraldize

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Re: Just tested postive and this forum has helped tremendously
« Reply #8 on: July 25, 2011, 05:43:12 PM »
Hi Ric,

Just curious--have you discussed the med regimens for which you're eligible with your doctor?

You seem to be focused on, or have decided upon, ATRIPLA, but I wondered if you have had time to review it with him and looked at all the pros/cons as each med has its personality, so to speak, and how your choice will fit with your lifestyle, expectations, etc.

Em

Offline Coolio_7

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Re: Just tested postive and this forum has helped tremendously
« Reply #9 on: July 25, 2011, 07:26:05 PM »
Em I haven't discussed anything with my doctor thus far. He was waiting on my phenotypic results for resistance Which take a month. Today actually makes a month since I sent n the blood work for that test.

So if there is no resistance issues I'm inclined to think that is what he may prescribe. I would also prefer one pill per day than multiple pills. I know the Endurant and truvada pill may be available next month. However depending on my viral load if it's high that may not be an option as there is more of a risk of Endurant not working with high viral loads and then developing resistance to truvada.

I guess atripla seems to be very popular and if there is no resistance issues it seemed that may be the one doctors may go with. I won't know anything about side effects until I try the meds first. I'm not wanting to take PI because of the risk of fat redistribution etc. If I have to go with a PI based regime I will. But my preference would be the prefered treatment option as it just one pill per day.

You mentioned a regime that suits my lifestyle. What do you mean exactly?  Thanks for your responses.


Offline leatherman

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Re: Just tested postive and this forum has helped tremendously
« Reply #10 on: July 25, 2011, 07:50:38 PM »
Welcome Cool  ;D

I want those numbers to get above 500 and stay that way.
don't be upset if you don't get those kind of results though. Since, like most people, you probably never had your tcells count done pre-HIV you don't actually know what your baseline count was. The "normal" of 500-1500 is just a general range and there is no way to measure or to know what is "optimal" and/or normal for each individual.

The tcell count number is a highly fluctuating number, It can change by over 100pts in just one day. The highest counts come in around 8pm (when labs and doctor offices are usually closed), while the lowest counts are around 10a (when more tests are actually done LOL). Stress can or cannot affect the counts; while exercise reduces the count for approx 30 mins before delivering a bump up. Oddly enough, cigarette smoking produces a temporary but very minor increase in cd4s.

The deal to remember is to keep the HIV viral load at UD so that your immune system can work properly at whatever it's normal level is. It's never about the quantity of tcells that you have (though the trend across 3 or more tests can give a general sense) but it's the quality of the tcells that you do have.

mikie
who usually averages 245 cd4s (which has kept him out of the hospital for 15 yrs), and just hit a 20-yr high of 338 cd4s.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Coolio_7

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Re: Just tested postive and this forum has helped tremendously
« Reply #11 on: July 25, 2011, 08:21:59 PM »
^^^Thanks Mikie for the positive feedback. I have never had a tcell count done while i was HIV negative so I dont know what my normal was. But all I can do is hope whatever regime I'm put on it gets me to undetectable levels and thus control of my HIV.

Offline buginme2

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Re: Just tested postive and this forum has helped tremendously
« Reply #12 on: July 25, 2011, 08:50:47 PM »
If your kidney test was only slightly elevated that most likely won prevent you from taking Atripla.  The Truvada (a part of Atripla) can cause Kidney problems so they may or may not want you taking truvada, I guess it just depends on your doctors decision if your kidney test warrants not being on it.  It may be ok, you just may need close monitori g.

If you cant take Truvada, that will take away Atripla as an option but you could replace the truvada with epzicom and pair it with Sustiva (the other part of Atripla).  You would then take 2 pills once a day.   There are plenty of optiOns available if you want to avoid PI's at this moment.  I wouldnt worry too much.
Don't be fancy, just get dancey

Offline Coolio_7

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  • Posts: 66
Re: Just tested postive and this forum has helped tremendously
« Reply #13 on: July 28, 2011, 01:55:59 PM »
Well I see my ID doctor in 2.5 hours and I'm getting nervous. I have so many questions to ask that I'm writing these down. My doc did tell me my cd4 count last visit but didn't tell me my %. I guess this will be one of the questions I ask him.

Today he will discuss with me my treatment options based on the results of my phenotype test which should be ready by now. And he will tell me my viral load which wasn't ready a month ago when I saw him.

Any advice guys on what questions etc I should ask my doc?

Thanks a million!

Ric

Offline phildinftlaudy

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Re: Just tested postive and this forum has helped tremendously
« Reply #14 on: July 28, 2011, 02:04:47 PM »
Sounds like you have the right questions lined up:

1) Based on VL and CD4 as well as phenotype/resistance tests - what are treatment options, if needed at this time
2) Get your CD4 % as this is a more stable (and IMHO reliable) indicator
3) Basically just further develop your relationship with your doctor.

Best to you - and let us know how it goes.

-Phil
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Coolio_7

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Re: Just tested postive and this forum has helped tremendously
« Reply #15 on: July 29, 2011, 12:08:29 PM »
Well I saw my doc yesterday. My resistance test results were good. My virus is sensitive to all medications. So I'm not limited in terms of treatment options.

So CD4 count: 333 (21%)
Viral load: 59,000 ( I was expecting this to be sky high! Doc says out of 100 patients only 20% will have less than 100k and even less % lower than 30k without meds. So he says the viral load in my case is not sky high)

He was a bit hesitant to give me the CD4 percentage as he stated it really doesn't matter. He went on to explain what it meant if it was high and if it was low and with meds if it's low it'll go back up with time.
But I told him I wanted it anyways, and he gave it to me.

We went over side effects of atripla as this is what he wants to start me on. I kind of anticipated this would have been the case since 70% of folks here in the US on treatment are taking either atripla or truvada (with at least one other class of drugs).

So I'm ready to pop this first pill tonight and I'm looking forward to getting back to my old self again. I'm tired of all these aches a pains that I never used to have before. I've been dealing with swollen lymph nodes in my neck now for the past 2 months. First 2 weeks when this started it prompted me to go get tested. Nodes were burning and swollen. Now they have gone down but I still get occasional ear and neck pain. 2 weeks ago the area behind my calves got extremely sensitive to touch and I had this burning/ tingling sensation nonstop for 2 days. The sensation moved to the front of my knee on the right leg. This lasted for 2 days. Told my doc about it and he said it could be nerves and HIV. So before anything else happens I'm ready to start this regime and get this virus under control.

I'll post tomorrow on how I feel once I would have slept through this my first night. Hehehe I'll watch porn just before bed so if I do have a technovibrant psychedelic dreams they will be x-rated! Lol

Thanks for all the advice folks. Appreciate it a lot.

Ric

Offline Assurbanipal

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Re: Just tested postive and this forum has helped tremendously
« Reply #16 on: July 29, 2011, 12:12:19 PM »
Sweet dreams! 

I hope you will have an otherwise uneventful start on taking back your health.

A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline leatherman

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Re: Just tested postive and this forum has helped tremendously
« Reply #17 on: July 29, 2011, 05:34:12 PM »
good to hear that your numbers weren't too terrible and good luck starting the meds. ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Coolio_7

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Re: Just tested postive and this forum has helped tremendously
« Reply #18 on: July 30, 2011, 01:16:49 AM »
Took my first pill (viraday- generic atripla...i think poster "Nate" take this as well) about an hour and 15 minutes ago and I don't feel anything. I'm in bed and about ready to go to sleep. I seem sleepy so hopefully I don't have problems falling asleep.

Lol I didn't watch porn but decided to watch a Mariah Carey concert ( daydream tour at Madison Square Gardens from 1995). So hopefully if I have a techno-color dream I'll be in the front row of one of her concerts! No nightmares! Lord...lol.

Anyways I'm off to bed.

Thanks for all the support!

Offline Coolio_7

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Re: Just tested postive and this forum has helped tremendously
« Reply #19 on: July 30, 2011, 01:24:44 PM »
OK so seems all went well with my first pill last night except I had a weird moment at about 4am. I couldn't even tell if I was awake or asleep. But I'm thinking I was asleep. But it was a brief dream it seemed that seems so realistic! Someone or something was running me into the ground. The legs of the person were going super incredibly fast that it was like a blur! Then I woke up terrified! Needless to say I couldn't sleep for 2 hours after that but I popped 2 sleep aids and was off to sleep for 6 more hours without a single dream or whatever that was I had.

I hope tonight I don't have that again. Lol. But otherwise I feel great! No dizziness etc when I woke up.

Offline Coolio_7

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Re: Just tested postive and this forum has helped tremendously
« Reply #20 on: August 04, 2011, 01:25:47 AM »
Took my 6th pill tonight and no major side effects. I've only experienced the slight dizziness if I wake up through the night to take a piss. And of course the random nightmare/ vivid dream the first night. I haven't had anymore of those type of dreams.

Seems like everything is going well thus far :)

Offline Coolio_7

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Re: Just tested postive and this forum has helped tremendously
« Reply #21 on: September 06, 2011, 04:28:58 PM »
Ok so here is an update. I just got my labs done last week after 4 weeks of being on treatment. Here are the results.

Viral load dropped from 59,400 to 787!
CD4 count went up from 333 to 461!

Also liver and kidney enzymes are all ok. I was worried that my kidney creatinine may have been a problem since it was slightly higher than normal. But I was told it's ok.

I forgot to ask about the CD4 %. I'm going to call back today and ask about that value as it's a very important indicator of my CD4 level.

I will continue to keep you all updated.

Offline Assurbanipal

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Re: Just tested postive and this forum has helped tremendously
« Reply #22 on: September 06, 2011, 04:33:09 PM »
Congratulations!
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Theyer

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Re: Just tested postive and this forum has helped tremendously
« Reply #23 on: September 09, 2011, 05:13:58 AM »
A belated welcome
theyer
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Themepark

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Re: Just tested postive and this forum has helped tremendously
« Reply #24 on: September 10, 2011, 08:47:52 PM »
Coolio

Your story is really inspiring. I tested poz last month with the very similar stat to your case. I quickly consulted my doc. and it has been already over a month now with Truvada and 10 days with Kaletra (switched from Stocrin in the 10th day  due to the rash). So far I have not much of the side effect of the latest combo. except occasional weakness and sometimes vision problem, which I am not sure any more whether they are caused by HIV or my on going psychosomatic disorder. On a good part my weight loss has rather stable now.

Any way, now I am looking forward for my next lab results. My doc. suggested to have it done in December, such an exciting moment to wait. Hopefully it will be progressive like yours.......

A.
05/08/11 Tested poz at the age of 32
06/08/11 CD4@365 27% VL=20,806
11/08/11 Truvada + Stocrin
22/08/11 Truvada (Stop Stocrin)
31/08/11 Truvada + Kaletra
15/09/11 Truvada + Aluvia
01/10/11 CD4@581 27% VL=234
25/02/12 CD4@661 30% VL<40
13/03/12 Truvada + Viramune
08/08/12 CD4@590 37% VL<40
17/11/12 CD4@650 33% VL<40
01/05/13 CD4@634 35% VL<40
06/09/13 CD4@763 36% VL<40

Offline Coolio_7

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Re: Just tested postive and this forum has helped tremendously
« Reply #25 on: September 12, 2011, 11:31:41 PM »
^^Here is to hoping your lab results come back with great results!

Thanks to all for the support, welcomes and encouragement. By the way, my CD4 % went up from 21% to 25%. Here's to hoping that it will be above 30% when I have my next labs beginning of November (was told normal CD4 % is 30-60%).

Offline wolfter

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Re: Just tested postive and this forum has helped tremendously
« Reply #26 on: September 12, 2011, 11:44:30 PM »
Those are all great results.   :D  You're getting the medical aspects under control, how are you dealing with the mental aspects?  IMO, that's the toughest part.  Again, great results.

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Themepark

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Re: Just tested postive and this forum has helped tremendously
« Reply #27 on: September 13, 2011, 07:24:04 AM »
Perhaps we must look at life this way; it is not proper to cure the eyes without the head nor the head without the body, is neither to cure the body without the soul - Socrates.

Let's keep it progressively Guys ^^
05/08/11 Tested poz at the age of 32
06/08/11 CD4@365 27% VL=20,806
11/08/11 Truvada + Stocrin
22/08/11 Truvada (Stop Stocrin)
31/08/11 Truvada + Kaletra
15/09/11 Truvada + Aluvia
01/10/11 CD4@581 27% VL=234
25/02/12 CD4@661 30% VL<40
13/03/12 Truvada + Viramune
08/08/12 CD4@590 37% VL<40
17/11/12 CD4@650 33% VL<40
01/05/13 CD4@634 35% VL<40
06/09/13 CD4@763 36% VL<40

Offline Coolio_7

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Re: Just tested postive and this forum has helped tremendously
« Reply #28 on: September 13, 2011, 10:44:56 PM »
^^wolfie. I have come to grips with my diagnosis. There is nothing I can do other than move forward and get this disease under control and try to live a healthy life. Im just grateful for the meds we have today and the prospect that I can accomplish the things I want to in this life.

First couple of weeks were pure anguish beating myself up about how this could have happened to me etc. But I'm generally a happy optimistic person. And that mentality will only help to keep me healthy...less stress!!

Offline Coolio_7

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Re: Just tested postive and this forum has helped tremendously
« Reply #29 on: November 03, 2011, 10:15:45 PM »
Ok so I just came back from seeing my ID specialist today for blood work after being on generic Atripla for 3.25 months now. My doc said he expects that I should be undetectable since last time I saw him two months ago my VL had dropped from 59k to 700 in only a month.

However, when I fist tested positive in June and had bloodwork done my doc was slightly worried about my creatinine levels as he stated it was slightly above normal. Based on what I was reading I was nervous that he would not have put me on Atripla. But he did anyways and the meds are doing what they are supposed to do. But after the first month my creatinine levels were still slightly above normal but had actually dropped from the first test before I even started Atripla.

So today he wants me to see a nephrologist. Now this has me worried. I have no other issues and side effects and I'm actually feeling much better then 4 months ago when I was first diagnosed. I don't have hep B or C. But should I be worried about this slightly higher than normal creatinine levels?

Offline Coolio_7

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Re: Just tested postive and this forum has helped tremendously
« Reply #30 on: November 14, 2011, 11:09:19 PM »
Just got back from my ID doc last weekend and I'm making steady and good progress. I'm very excited and hope that this combination I'm on will continue to work for years to come.

After 3 months on treatment viral load has decreased from 59k to undetectable!
CD4 went from 333 to 506 and cd4% from 21% to 28%
CD8 count 854 @ 47% (high side)
CD4/CD8 ratio 0.59 (still on the low side)
Creatinine went from 1.37 (slightly above normal- max 1.33) to 1.20

But I've been wanting to get to a cd4 count over 500 and I've reached that milestone! Next step is to get my cd4/cd8 ratio back into the normal range along with my cd8 percent below 42%.

Thanks to everyone for the advice and support over the last few months. I hope that I will continue to get better.

Offline Themepark

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Re: Just tested postive and this forum has helped tremendously
« Reply #31 on: November 15, 2011, 06:02:57 PM »
Great result dude.........bravo  ;D
05/08/11 Tested poz at the age of 32
06/08/11 CD4@365 27% VL=20,806
11/08/11 Truvada + Stocrin
22/08/11 Truvada (Stop Stocrin)
31/08/11 Truvada + Kaletra
15/09/11 Truvada + Aluvia
01/10/11 CD4@581 27% VL=234
25/02/12 CD4@661 30% VL<40
13/03/12 Truvada + Viramune
08/08/12 CD4@590 37% VL<40
17/11/12 CD4@650 33% VL<40
01/05/13 CD4@634 35% VL<40
06/09/13 CD4@763 36% VL<40

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: Just tested postive and this forum has helped tremendously
« Reply #32 on: November 15, 2011, 06:13:24 PM »
awesome news!  ;D

I'm trying not to be jealous of all those numbers that are nearly double what I've got after 18+ yrs.  :P  :D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

 


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