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Author Topic: Good HIV numbers, but getting sicker:  (Read 3462 times)

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Offline jm1953

  • Member
  • Posts: 262
Good HIV numbers, but getting sicker:
« on: August 22, 2010, 10:56:20 PM »
After 23 year being positive, diagnosed positive in 1987, AIDS diagnosis in 1996, I've been lucky to keep up with the new medicines as they come out, unlike my best friends who died in the 1980's early 90's.  I have so much survivor's guilt about this basically because I miss them so much.  I always carry them in my heart.  I'll never forget them.

But now I feel kind of like the forgotten survivor.  Yea my HIV numbers are stable, and no viral load, but during the past three years I have never been sicker.  Chronic kidney disease, a blood disease, major foot and leg atrophy, major skin issues, the list goes on.  More and more specialists, procedures, medications, looking at least two surgeries.  Support is practically non existent from family and friends either, I guess because they figure if you've lived this long you'll live forever so not to worry.  It appears since I  have decent CD 4 counts many can't understand why I'm sick all the time.  I know I've read others kind of having the same problems with really high CD4 counts.

Doctor's theories, having HIV for so long, the meds taking their toll, my age 57, chronic depression.  My point is even though it is great to maintain good HIV numbers and less than 50 viral load, I feel like crap most of the time now.  Life revolves around going to the doctors, procedure upon procedure, more medications, hard to keep up with daily chores.  No energy.

Not whining, even though it sounds that way I guess, but as a long termer, at least in my case, people stating your numbers look good, but I'm having all these physical and emotional problems doesn't cut the mustard any more.  Feel I'm paying my dues as a long termer. 

I'm seeing a therapist, and a psychiatrist, but feeling like it's rather hopeless.  I'm hoping a possible move to California with a friend and hopefully living on the ocean will help me snap out of this or have a more positive attitude.  But I don't think I can survive another three years if something doesn't change.  It's kind of like where did the quality of life go.

Bottom line, just tired of your CD 4 and viral load taking precedence over how you really feel overall.  I'm glad I made it this far, but feel rather invisible, like a forgotten survivor.

Anyone else feel like this, or is it just me?

Best,

JM
Positive 25 years. 7/21/2012 Current CD 4: 780 Viral load: less than 50. 38 to 40%
Current drug regimen, Isentress, , Emtriva, Sustiva Wellbutrin, Klonipin, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline Billy B

  • Member
  • Posts: 374
Re: Good HIV numbers, but getting sicker:
« Reply #1 on: August 23, 2010, 11:11:52 AM »
JM- As a older long termer I have lost most of my friends. Not everyone passed from AIDS they just got old. My circle is getting smaller every year but I am thankful that I have been allowed to remain.
I see that your numbers are indeed good, but have you or your ID thought about switching out your Sustiva for something else like Isentress? Sustiva has a history of causing depression and brain fog. More and more of my + friends are changing from Sustiva (or Atripla) because of the CNS effects. I only used Atripla for about two weeks and it put me in a very dark place.
Peace,
Billy
VL 4420 CD4 340 CD4% 24   3/15/10 Started I&T
VL  UD   CD4 340 CD4% 26.5 05/13/10
VL  UD   CD4 360 CD4% 27.1 08/3/10
VL  UD   CD4 310 CD4% 28.4 11/22/10
VL  UD   CD4 420 CD4% 27.9 02/11/11
VL  UD   CD4 370 CD4% 26.4 06/08/11
VL  UD   CD4 360 CD4% 27.7 09/23/11
VL  UD   CD4 370 CD4% 28.3 01/20/12
VL  UD   CD4 430 CD4% 28.8 05/11/12
VL  UD   CD4 370 CD4% 28.1 09/07/12
VL  UD   CD4 390 CD4% 32.3 03/14/13

Offline jm1953

  • Member
  • Posts: 262
Re: Good HIV numbers, but getting sicker:
« Reply #2 on: August 23, 2010, 09:45:52 PM »
BillyB:

I think you might have hit the nail on the head.  I've been on Sustiva for a long time.  Time for a change.  I'll talk with my HIV doc next time about Isentress. 

Never would have thought of this!

Thanks so much,

Best,

JM
Positive 25 years. 7/21/2012 Current CD 4: 780 Viral load: less than 50. 38 to 40%
Current drug regimen, Isentress, , Emtriva, Sustiva Wellbutrin, Klonipin, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline jm1953

  • Member
  • Posts: 262
Re: Good HIV numbers, but getting sicker:
« Reply #3 on: August 23, 2010, 09:55:44 PM »
Just saw on the thread treatment and side effects a topic about members with amazingly high CD 4 and no viral loads, some having events of pneumonia and such.  Others doing great.  Most being diagnosed in the past few years instead of more than 20 like a lot of us.  Some interesting information there though.   Worth a read.

JM
Positive 25 years. 7/21/2012 Current CD 4: 780 Viral load: less than 50. 38 to 40%
Current drug regimen, Isentress, , Emtriva, Sustiva Wellbutrin, Klonipin, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline aztecan

  • Member
  • Posts: 5,394
  • 29 years positive, 57 years a pain in the butt
Re: Good HIV numbers, but getting sicker:
« Reply #4 on: August 31, 2010, 10:34:43 PM »
Hey JM,

Sustiva was awful for me. I lasted two months and then had to switch.

I think a switch may  be a good thing for you as well.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: Good HIV numbers, but getting sicker:
« Reply #5 on: September 10, 2010, 07:14:58 AM »
As I read your post, I thought damn, this sounds like me! I can definitely relate to your feelings. I'm in a similar boat. I feel like I'm drifting out to sea, and no one would notice or care. A hopeless feeling, indeed.
The only think keeping me from losing my mind has been my writting. I am writting a memoir so that others who are going through the same thing, can maybe learn a thing or two, thus making their lives a little bit better. I have also done some speaking. This has really helped me feel better about myself. Just a few thoughts for you to ponder.

I think your idea about moving is a great one. It seems like you have nothing to lose, so why not GO FOR IT! Sometimes a change is a great thing.

I hope you can dig yourself out of this. I think your story is more common that most realize. And you are brave to have the balls to discuss this in public.
All the best,
Jeff
Positive since 1985

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,908
Re: Good HIV numbers, but getting sicker:
« Reply #6 on: September 10, 2010, 09:28:53 PM »
JM, I didn't last on Sustiva either.  I believe I took it for one month, then switched.  I hope things clear a bit for you!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline miked

  • Member
  • Posts: 12
Re: Good HIV numbers, but getting sicker:
« Reply #7 on: September 13, 2010, 08:09:34 PM »
I've been positive since 86 and on meds since 87.  I have always had low t cells (usually in the low 200's) and my viral load would usually switch between just detectable to undectable.  Was diagnosed with KS in october 2007. SwitchED to prezista, isentress, norvir and truvada and did a 90 days of fuzeon.  Finally got my VIRAL load undetctable. Started doxil for treatment of KS and have had problems with it consistently coming back,  T cells dropped to 150 while on chemo.  Have had problems with extrememe fatigue for years, but the switch to current antivirals had originally improved it immenously but after 3 years of chemo, the fatigue is back.  With the fatigue, I just can't get motivated to do much of anything.  Started welbutrin about 3 weeks ago and not seeing any improvment.  Have sort of resigned myself to have consistent problems that are just very annoying but not debillitating.

 


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