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Author Topic: Diagnosed in 2011 - what should I expect?  (Read 3369 times)

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Offline LM

  • Member
  • Posts: 409
Diagnosed in 2011 - what should I expect?
« on: April 27, 2011, 11:23:22 PM »
Well, hello to all.

I've had two risky encounters in the last months, and unfortunately I was unlucky enough to test positive last week. It's been tough, but reading much of the info here has been helpful to overcome the shock and the feeling that my future was lost. I'm thankful for finding a place with people in a similar condition and with so much to teach.

What I would like to know is everyone's impression of the epidemic today. What should someone infected today expect from the future? Better yet, the golden question: when, if at all, do you think a cure will be available? 5, 10, 20 years? Never? I've read interviews with scientists about it, but I'm more interested in what you guys think, from the most optimistic to the most pessimistic, just to check people's perspectives of the situation today and in the foreseeable future. I guess just getting the overall feeling of the community would help to put things in perspective. Anyway, thanks to all of you.

Offline mikeyb39

  • Member
  • Posts: 921
Re: Diagnosed in 2011 - what should I expect?
« Reply #1 on: April 28, 2011, 12:20:18 AM »
welcome to the forum LM,

I'm recently diagnosed myself back in November of last year.  The forums are very helpful and so is the site itself.  most everyone on here are pretty cool for the most part.  So have you had a chance to do any blood work , find a HIV specialist etc?

As far as the cure is concern, I believe a 'cure' will be a little ways off, but my doctor believes a 'functional cure' will more than likely come first before a complete cure comes around.  Functional meaning possibly not having to take medications on a daily basis instead sometime in the near future might only have to come in once every two or three months for a shot or at least have medications that do not come with some of the risk factors as some do today as far as liver, kidney issues down the road.

well if you have any questions please feel free to ask away, you will get plenty of answers I'm sure.

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

Offline geobee

  • Member
  • Posts: 267
Re: Diagnosed in 2011 - what should I expect?
« Reply #2 on: April 28, 2011, 01:18:26 AM »
Hey LM -- sorry to hear about the dx.  I probably google "HIV cure" every day.  Having said that, I try not to think about it much.  It's taken me a while to adjust to the "new normal", but I have gotten used to it (2 years now).  As far as a cure goes, I really think the Sangamo/USC/City of Hope folks are onto something with the modified T-Cells and stem-cells (both presented at CROI).  I don't see it as a cure as much as I see it as an alternative treatment.  Instead of taking drugs we might get topped off with our own modified HIV-resistant T-Cells or stem-cells every 6 months or so.  I listened to Sangamo's investor call on Tuesday and they said they'll be presenting results of the T-Cell therapy on treatment-naive and treatment-failure populations in the 2nd half of 2011.   If that news is good, I think it'll be in the clinic in about 3-4 years. In the meantime, I take my meds, make my peace with "big pharma" and say a little prayer for all the folks that came before me.  Hope this helps.

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Diagnosed in 2011 - what should I expect?
« Reply #3 on: April 28, 2011, 02:06:09 PM »
A big adjustment you face is the need to focus on your health.  Unless you have had some other chronic condition, the blood tests, doctor visits, need to take drugs etc.  will be a big change for you.  And you need to face these changes: unmanaged HIV is still a killer.

So that is the pessimistic side.

But if you are willing to pay attention to your health and have access to medical care I'd be pretty optimistic, particularly since you found out you were infected pretty quickly and it hasn't festered a while.  People newly infected who know it and have good medical care can have great health with the medicines available today -- and the next decade will see the increasing benefits of genetic knowledge combined with cheap information technology to come up with new and better treatments for a variety of conditions -- read the cancer news -- its happening there already.  Whether there is a "cure" or just a lot more ease of treatment, things are likely to get a lot better over the next decade -- if you are willing to and have the access to manage the disease now.


Be well

(and welcome to the forums)
Assurbanipal

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 buginme2

  • Member
  • Posts: 2,834
Re: Diagnosed in 2011 - what should I expect?
« Reply #4 on: April 28, 2011, 09:39:43 PM »
Welcome!! I think it is normal being newly diagnosed and focusing on when a cure will happen.  It will happen when it happens.  One thing to consider, is when the HIV virus was first discovered in the early 1980's our government (the U.S. government) announced there would be a vaccine for HIV within 2 years.  Its now 2011. 

You will hear a lot about new research and new hope.  While its all encouraging my point is don't bet the bank on it.  Research takes time.  A long time.  A cure may happen tomorrow, maybe not, I don't know.  I agree with Assurbanipal, focus on your health and obtain good medical care and stay with it.  Current treatment helps a lot with HIV. 

Offline LM

  • Member
  • Posts: 409
Re: Diagnosed in 2011 - what should I expect?
« Reply #5 on: April 29, 2011, 02:28:24 PM »
Thanks for your comments. I still have to re-do my tests and only then I'll probably check VL, CD4, etc. Where I live, they only prescribe the meds when your CD4 is under 350, and then you get them for free, although not Atripla, for example. So I'm worried about that.

And I don't know, like geobee said, I keep on the lookout for research news everyday. But I know my situation is much better than it was for people diagnosed 20 years, let alone 30, so I'm trying to be more optimistic.

Besides, I feel that the meds today can't be much improved, except for what you guys said, taking a shot every 3 or 6 months. That would be a blow to the profit of the pharma companies, also considering that the patents for the current meds will eventually end. So I think a cure is becoming the only way out for the future. Maybe I'm totally wrong, but I truly hope something will come up this decade.

Offline lost_boy

  • Member
  • Posts: 105
Re: Diagnosed in 2011 - what should I expect?
« Reply #6 on: May 05, 2011, 12:49:13 PM »
Hey LM,

Just to say, I know exactly how you feel, and it is a completely normal reaction. I was diagnosed back in late 2009, and it really knocked me for six. Went through a complete bereavement, kind of for myself and the ambitions I had... but with time, I realised it wasn't the end of the world, your life does go on, and you can still do 99% of all the things you hoped to achieve. It's an adjustment, but then life does through some hard knocks at you sometime! You'll get through it, just remember to take all the time you need to get your head round the news and be forgiving to yourself.

Yep, this all sounds very self-helpy (which isn't my scene at all) but don't worry! These forums are a great help and source of information, and a good way to unburden yourself and talk. Be sure to make use of them :)

Offline mbpoz6

  • Member
  • Posts: 82
Re: Diagnosed in 2011 - what should I expect?
« Reply #7 on: May 05, 2011, 08:21:12 PM »
Hi LM. I'm newly diagnosed this past January... Took it really hard, but I've been doing much better since. Still able to do everything I did before I was poz (except unprotected sex of course lol)

I believe a "functional cure" (virus kept in check, stays undetectable less than 50 copies, without the use of meds) will be available soon. When exactly? I don't know but soon I think. Maybe 5 yrs? 10 I hope?.  But as for now, current meds do the trick and you will be just fine. Expect to live a long life.  :)

Welcome to the forums.

Offline LM

  • Member
  • Posts: 409
Re: Diagnosed in 2011 - what should I expect?
« Reply #8 on: May 10, 2011, 11:38:49 PM »
Thanks lost_boy and mbpoz6. I think we all need some self-help kind of talk at this time. But I'm more optimistic now about things. Well, at least most of the time. Things will get better, for all of us.

 


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