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Author Topic: Im terrified... NEED HELP.  (Read 25628 times)

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Offline leatherman

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  • Google and HIV meds are Your Friends
Re: Im terrified... NEED HELP.
« Reply #100 on: October 17, 2011, 09:48:58 PM »
I'm still struggling with my diagnosis, if I told you otherwise I would be lying. I dont think I will ever be OK with it but I'm learning to adjust myself and deal with it.
though it may sound kinda trite, it's still very true:
It gets better.  ;) (it just takes time)
leatherman (aka mIkIE)


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

Offline scared2b

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Re: Im terrified... NEED HELP.
« Reply #101 on: October 20, 2011, 02:19:00 AM »
its hard to believe its only been 3 months since my diagnosis. life's crazy eh!

Offline scared2b

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  • Posts: 79
Re: Im terrified... NEED HELP.
« Reply #102 on: October 30, 2011, 03:20:15 AM »
Hey friends,

I just wanted to update you all. My VL went down from 100K to 55K and as I mentioned my CD4 is now 500. So I've decided to start meds before this virus gets a chance to fuck with my cells and lymph nodes, here is a small summary of what we talked about new emerging research results.


We talked about drugs and the documented benefits of starting as early as possible on the immune system. This is what I believed myself too from reading the literature but working in the States at an HIV clinic it was all about insurance recommendations and etc and nothing about the new research and etc. so He showed me all the research he has done with the World's most famous HIV researchers and I was quite astonished to see the benefits of starting early which confirmed my earlier conclusion from my own reading of the literature.

First of all what we see as VL and CD4 count is obviously what we get from our blood which contains only 2% of our cells and is a very indirect mechanism of estimating the numbers in your lymph nodes which is where the real battle is taking place. The true numbers are  X 10,000 and even that is an estimate. Therefore as we are counting these numbers in our blood, the lymph nodes and their encompassing immune cells are being attached by the virus that is replicating 10 Billion copies per day and therefore in the long run leaving the nodes scared, ineffective and create fibrosis which is obviously irreversible damage. He actually showed me the picture of it that was published by him. Remember even with medication use, there are still some residual amount of virus being replicated and so we need healthy cells to fight them off. So basically as some ignore their HIV status or when they are simply waiting for a certain number to hit before they start medication the virus is not waiting, they are attacking the lymph nodes and the immune cells every single day and are eventually causing irreversible damage. So that when the patient does start meds and get their numbers back up, and again those are the numbers in the blood stream, meaning that they came from those damaged lymph nodes that have been attacked while the patient was waiting for a certain number to hit. Therefore these new cells that are coming from these lymph nodes are not going to be as effective in quality and in the long run will fall back down sooner than if the meds were started early on, keeping the nodes healthier and therefore producing a better quality cells which can withstand the virus longer and won't fall back down as fast at all.

I saw a graph that showed that if you start meds while in early seroconversion your lymph nodes recover beautifully and quite fast. if you start meds in late seroconversion or shortly after your lymph nodes will recover beautifully again and fast but not as fast as early seroconversion yet still fast enough and more importantly the recovery was at the same level of the former. If you let the process go chronic and wait a long time before starting meds then your nodes will only be able to recover up to a certain level because remember the damage is irreversible to the nodes when it is chronically being attacked by the virus. I wish I could draw the graph but I will try to find the literature for you guys.

Another reason why most people wait is that they don't want to start committing to a pill for the rest of their lives and want to delay initiation as much as possible. He gave me a really good analogy. He said its like delaying your honeymoon for a week, a month or even a year longer but if you're going to be in a marriage that is 50-60 years long then those few weeks, months or even a year that you spent in honeymoon seems very small and pointless while you could have been benefiting from starting early!!! Makes so much sense to me.

Anyways therefore the sooner you start the better off you are and he is right. there is no other medical condition that we know of where we have a medication and a management for but for no reason at all we decide to wait and withhold treatment until the patient gets sick or their numbers fall bellow a certain made up number.

The important thing he noted was that when (not if) in the future there is a cure for HIV, then you can bet that only those can be truly cured that started meds early on and were able to restore their lymph nodes back to the healthy level and not have let the process go chronic because even with a cure for HIV you must remember that even if you cure someone of their HIV the virus, you cannot reverse the process of fibrosis in their lymph nodes and so it is imperative that you keep your organs and your nodes healthy by starting meds early.

With Love,
   :-)
« Last Edit: October 30, 2011, 03:49:48 AM by scared2b »

Offline Themepark

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Re: Im terrified... NEED HELP.
« Reply #103 on: October 31, 2011, 03:54:01 AM »
Dear Scared

I must confess that I have followed your post since day one and it has been really inspiring what you have posted so far. I was tested poz about 3 months back. And I already had the same thought as you do thatothers is no point of waiting to start meds. so I did started it in less than a week after the news. I have no sorrow for decision I made thought it has not been such a smooth road to go through. And since I am in the bloody, also floody at the moment, developing part of the world, options for treatment are still limited here. At least what we have seems to work for me as my cd4 increased and vl dropped drastically within the first month.

It is also admirable how you turned your attitude towards the future. It have come to the fact that mind take control over the body in this kind of battle. Getting the right weapon will make it easier to understand the stage of life I guess. So I guess your medical background will hopfully help not just you but also all of us here to fight with the unfortunate life we share here. Keep posting, we need to be inspired by people like you!

Many thanks
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 scared2b

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Re: Im terrified... NEED HELP.
« Reply #104 on: October 31, 2011, 09:08:28 PM »
Thank you so much for being so sweet and your kind words.

xoxo

Offline wjaxon

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Re: Im terrified... NEED HELP.
« Reply #105 on: November 09, 2011, 06:47:54 PM »
You seem to have taken the bull by its horns man. Bravo.  Hope all is well and that you continue to flourish!
Infected Aug 2011; Dx Sept 2011; Started meds Sept 2011 VL >10 million  CD4 258.  10/2011 VL 2890 33.6% CD4 706.  11/2011  VL 1300  CD4 778

Offline csguy1

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Re: Im terrified... NEED HELP.
« Reply #106 on: November 22, 2011, 08:12:36 AM »
Hey Oz and guys. Sorry to hear about the confirmation. I too just found out I tested positive for HIV yesterday. I went for my normal std and HIV check up and come to find out  that it came back poz. I immediately had to leave work and just breath. I didn't cry, even though I wanted to, so I tried and called to make an appointment w/ an HIV specialist who is an in network provider on the health insurance. I tried to clear my mind to the best I could, told myself that I am going to fight this, do the best that I can do, and live a long healthy life. I returned back to work 45 mins later and tried to focus on what I do best, project manage and analyze software dev. Issues for the financial firm I work for.
I managed to get through the rest of the day by trying to keep busy, and reading articles getting informed about it and reading a few forums as well. Your forum along with other inspires me and gives me
Confirmation that we and anyone can fight this battle as long as you continue to remain positive, reach out for support, and do your due dilegence in fighting this virus.

I'm 26, work out 5-6 days a week, had been healthy my whole life and hope to continue being as healthy for the rest of my life. I am now HIV positive, this is my first post in a forum, and hope to hear from you guys soon.

-Hanging in there and trying to remain optimistic-

Offline spacebarsux

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  • Survival of the Fittest
Re: Im terrified... NEED HELP.
« Reply #107 on: November 23, 2011, 06:17:22 AM »
Hey Csguy,

Sorry to hear about your diagnosis but welcome to the forums.

You might want to open your own thread; you'll get more personal responses there.  :)

I can understand how your thoughts would be caught in a whirlwind at this time, however you will see the angst dissipate in the coming months - and will eventually realise that you're the same person and with the same life except that you now have this infection to manage.

It seems you have a good handle on things so far, which is already a great sign.   :)

Best

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 Ann

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    • Num is sum qui mentiar tibi?
Re: Im terrified... NEED HELP.
« Reply #108 on: November 23, 2011, 10:00:12 AM »
Hi CSguy, welcome to the forums.

Space is right - you may want to start your own thread.

Have you had your positive result confirmed with a Western Blot test, or did you only get a positive result on an antibody test? Sometimes a positive result on an antibody test is a false positive. That's why you need to confirm with further testing. You cannot really consider yourself to be hiv positive until you've had the confirmation, so if you haven't already, please do this.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...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 csguy1

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  • Posts: 35
Re: Im terrified... NEED HELP.
« Reply #109 on: November 24, 2011, 02:24:34 PM »
Thanks Spacebar and Ann..

I didn't know how these forums worked, I guess I could start another one sorry for hijacking Oz's.

I had a blood test as I always get will be going to the HIV specialist tomorrow afternoon and go from there.

Happy Thanksgiving!

Offline scared2b

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  • Posts: 79
Re: Im terrified... NEED HELP.
« Reply #110 on: January 17, 2012, 05:05:06 PM »
Hey guys,

just wanted to update you quickly. I started taking Atripla+Isentress less than two months ago and today I received my results and my CD4% increased from 24 to 31% and my VL is now undetectable!!!  I was taking two pills so that my VL can come down fast and now I'm going on Atripla alone.

I want to thank you all for being there with me when I was down... This journey started in late July when I got my + news. It will still be a long journey but I am hopeful...

Offline spacebarsux

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  • Survival of the Fittest
Re: Im terrified... NEED HELP.
« Reply #111 on: January 19, 2012, 04:24:54 AM »
Well done Scared2b! Congrats on reaching undetectable!!

btw, why were you put on Atripla + Isentress? Isn't Atripla sufficient?
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%

 


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