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Author Topic: 3 years and it still works  (Read 7088 times)

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Offline RAB

  • Member
  • Posts: 1,895
  • Joined March 2003
3 years and it still works
« on: December 23, 2006, 07:05:05 pm »
December 22, 2003

When I first came to these forums in March of 2003 I was in a very difficult position.

In 2001 I had to stop a regimen which included full strength Norvir due to metabolic toxicity.  I went on a treatment break for 2 years (something that I wish I hadn't been forced to do--but even with that. . . . .).

My labs were declining and my doctor at that time was unable to suggest a regimen which would be effective.  I am one of the "long termers" who had burned through most of the drugs on mono-therapy before we knew better.  I am resistant to all the nukes and non-nukes.  The only class of drugs that I still had available were the PIs.

Through these forums and the suggestions of Gerry and Tim on December 22, 2003 I started a new regimen which included the following:

Fuzeon
Kaletra
Invirase
Viread
Epivir

My counts, if my notes are correct, at that time were:

CD4--291
CD4%--8%
VL--360

While my VL was obviously really low, the cd4 absolute and cd4 % were the lowest values I had ever had since I started keeping track in 1988 (yes that's 1988--god I am so anal retentive!)  But my strategy from the very beginning was to be aggressive.  Obviously that didn't always work in my favor (see note about using drugs on mono-therapy) but yet despite everything here I am--still.

So yesterday maked my 3 year anniversary on the regimen I mentioned.

My last labs:

CD4--879
VL--<50 (maximum viral suppression)

I've been around the block with this virus a time or two.  I remember those days, days which most of you will thankfully never ever have to experience.  But yesterday I marked yet another miletone.  Someone who theoretically had "no treatment options", has not only found one, but has continued to win the war.

I am optimistic.
I am grateful for the suggestions I was given here.

MOST IMPORTANTLY

I'm happy.

RAB

Offline newt

  • Member
  • Posts: 3,900
  • the one and original newt
Re: 3 years and it still works
« Reply #1 on: December 23, 2006, 07:14:42 pm »
You missed out "hot"  :D

Seriously, brilliant mr

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

Offline Nadine

  • Member
  • Posts: 1,253
  • Member since: August 2005
Re: 3 years and it still works
« Reply #2 on: December 23, 2006, 07:33:22 pm »
Rocky,

Your post puts a big smile on my face.

I am so happy you have found something that is working great for you!

(((BIG HUGS)))

Offline AlanBama

  • Member
  • Posts: 3,670
  • Alabama: the 'other' 3rd World Country!
Re: 3 years and it still works
« Reply #3 on: December 23, 2006, 07:35:11 pm »
Great news, honey.   I am so glad it's still working for you.   I need you around for a lot longer, so it better keep on working... ;)

I'm grateful for your meds, that keep you well.   We've been to the 'dark side' haven't we?  and it isn't a bit cute.

We all complain and gripe at times about having to take meds....but as you and I have discussed many times, it SO beats the alternative.

Love & Christmas hugs,

Alan  :-*
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Robert

  • Member
  • Posts: 2,658
Re: 3 years and it still works
« Reply #4 on: December 23, 2006, 08:04:46 pm »
Bravo~~~.

What a great dose of Christmas cheer.

rocky...I'm so glad we've met.

robert
..........

Offline David_CA

  • Member
  • Posts: 3,246
  • Joined: March 2006
Re: 3 years and it still works
« Reply #5 on: December 23, 2006, 08:07:22 pm »
Good for you, Rocky!  It's nice to hear something 'positive' dealing with being positive.   ;)
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline Life

  • Member
  • Posts: 2,389
  • Member 2005
Re: 3 years and it still works
« Reply #6 on: December 23, 2006, 08:14:02 pm »
What blows me away Rocky is you get all of these things in motion for youself and you have time to give so much back here....  That is humbling for all of us to see and feel from you..

Happy Christmas,

Offline Blixer

  • Member
  • Posts: 712
Re: 3 years and it still works
« Reply #7 on: December 23, 2006, 08:25:03 pm »
Thanks for sharing that!  It's great news and a big comfort to someone like me.  I'm into this HIV thing less than a year and so far so good, but there is always that worry in the back of your mind.  It is great to hear that you found support and advice that has you back with a great CD4 count and a supressed virus.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline Longislander

  • Member
  • Posts: 2,489
Re: 3 years and it still works
« Reply #8 on: December 23, 2006, 08:48:34 pm »
Thanks for sharing the hope RAB. Definitely something to be happy about!
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline marco23

  • Member
  • Posts: 392
Re: 3 years and it still works
« Reply #9 on: December 24, 2006, 02:01:03 am »
Hey, it's always great to take advise from the forums.....everyone here has always been helpful to me...now, my advise to you is....
 "NO WIRE HANGERS, EVER!"
Don't hide your hurt, pain and feelings inside..for they will harden your heart.

Offline Eldon

  • Member
  • Posts: 2,664
Re: 3 years and it still works
« Reply #10 on: December 24, 2006, 02:44:31 am »
Yes, I AM Supporting You!


Hey RAB...

It is GOOD to hear from you! Also, happy anniversary as well and congratulations on your numbers. Keep up the fight, we are in it to win it.

I am also Happy to hear that you are also Happy! Happy+Happy=Happy!




Don't You Dare Give Up, Don't You Dare Give In...Because It Is ALL Within YOU to WIN!!!

Offline heartforyou

  • Member
  • Posts: 1,132
  • I must be a survivor in many ways...
Re: 3 years and it still works
« Reply #11 on: December 24, 2006, 04:13:39 am »
Rocky baby,

I am so glad to hear you are hanging on.

It shows your attitide and the will of a tiger to go an and beat these bastards...

Happy holidays

hermie :-*
Infected 1983. Diagnosed in 1987 and still kicking
Dovato once daily. Hydrea

Happiness is the freedom of breathing fresh air every day.

Offline poet

  • Member
  • Posts: 934
  • Poet living and working in Central Maine
Re: 3 years and it still works
« Reply #12 on: December 24, 2006, 05:41:08 am »
Rocky it appears that, as the song goes, there ain't no mountain high enough.  Keep climbing for and with us.  Best, Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline blondbeauty

  • Member
  • Posts: 1,787
Re: 3 years and it still works
« Reply #13 on: December 24, 2006, 06:32:40 am »
Merry Christmas Rab!
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline skeebo1969

  • Member
  • Posts: 5,931
Re: 3 years and it still works
« Reply #14 on: December 24, 2006, 07:22:34 am »


    That is really awesome news Rab thanks for sharing it with us.   Along with your positive attitude and great information from Gerry and Newt your immune system really seems to be kicking the virus in the ass.   I hope you have a Happy Holdiday.

   Thomas
I despise the song Love is in the Air, you should too.

Offline sweetasmeli

  • Member
  • Posts: 1,052
  • Love what you are...
Re: 3 years and it still works
« Reply #15 on: December 24, 2006, 07:47:09 am »
YAY for Rocky!

I keep meaning to tell you - but keep forgetting - when I was in Oz I tried a delightful chocolate treat called Rocky Road. It made me think of you! I happily came home with the recipe. When I (eventually) get round to making it, I will dedicate every yummy mouthful to you and your continuing nice numbers and good health!

YAY again for Rocky!

Melia :)
/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 34,126
Re: 3 years and it still works
« Reply #16 on: December 24, 2006, 09:01:21 am »
Big cheers for you, Rocky!

Stallone should hang it up and instead make a movie about a REAL Rocky!

Happy Holiday, bud.
Andy Velez

Offline newt

  • Member
  • Posts: 3,900
  • the one and original newt
Re: 3 years and it still works
« Reply #17 on: December 24, 2006, 09:03:48 am »
Er, wrong film andy  :D - matt
"The object is to be a well patient, not a good patient"

Offline J.R.E.

  • Member
  • Posts: 8,207
  • Positive since 1985, joined forums 12/03
Re: 3 years and it still works
« Reply #18 on: December 24, 2006, 09:39:16 am »

Great numbers Rocky, congratulations  Keep it going



Ray
Current Meds ; Viramune / Epzicom Eliquis, Diltiazem. Pravastatin 80mg, Ezetimibe. UPDATED 2/18/24
 Tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 UPDATED: As of April, 2nd 2024,Viral load Undetectable.
CD 4 @593 /  CD4 % @ 18 %

Lymphocytes,total-3305 (within range)

cd4/cd8 ratio -0.31

cd8 %-57

72 YEARS YOUNG

Offline bear60

  • Member
  • Posts: 4,105
Re: 3 years and it still works
« Reply #19 on: December 24, 2006, 10:36:38 am »
Have a Beary Christmas!!
Poz Bear Type in Philadelphia

Offline JohnOso

  • Member
  • Posts: 817
Re: 3 years and it still works
« Reply #20 on: December 24, 2006, 11:20:29 am »
Rock,

Way to hang tough, man.  Woof!

--John

Offline thunter34

  • Member
  • Posts: 7,374
  • His name is Carl.
Re: 3 years and it still works
« Reply #21 on: December 24, 2006, 01:26:33 pm »
Ya know what?  Reading that officially ranks as one of the top joys I found in this Christmas.  No joke.

Conrgatulations!



tim
AIDS isn't for sissies.

Offline Jody

  • Member
  • Posts: 1,961
Re: 3 years and it still works
« Reply #22 on: December 24, 2006, 08:40:15 pm »
Dearest Rocky...Our Rock of Gibralter, our Dome of the Rock, our Rock of Ages, our Third Rock from the Sun....It's so good that your regimen is working well for you as there was so much you were no longer able to take because of the years of monotherapy...Keep up the good work and Keep on Rollin' dear Rocky !!!

Jody  ;D
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline Lou-ah-vull

  • Member
  • Posts: 1,029
Re: 3 years and it still works
« Reply #23 on: December 25, 2006, 12:45:49 am »
Rocky,

I want to join the chorus to wish you well.  You and the other "long timers (e.g. Alan Bama) are real inspirations to me.  Your journey has made our journey much better and much safer. 

Best wishes for a healthy and happy New Year!

Gary
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD
01/15: 1366 (45.2%), UD
07/15: 1134 (50.7%), UD
02/16: 1043 (55.1%), UD
08/16:  746  (55.4%), UD
08/16:  Switch from Atripla to Genvoya

Offline PositivelyYours

  • Member
  • Posts: 133
Re: 3 years and it still works
« Reply #24 on: December 25, 2006, 03:07:34 pm »

POSITIVELY EXCEPTIONAL!!


December 22, 2003

When I first came to these forums in March of 2003 I was in a very difficult position.

In 2001 I had to stop a regimen which included full strength Norvir due to metabolic toxicity.  I went on a treatment break for 2 years (something that I wish I hadn't been forced to do--but even with that. . . . .).

My labs were declining and my doctor at that time was unable to suggest a regimen which would be effective.  I am one of the "long termers" who had burned through most of the drugs on mono-therapy before we knew better.  I am resistant to all the nukes and non-nukes.  The only class of drugs that I still had available were the PIs.

Through these forums and the suggestions of Gerry and Tim on December 22, 2003 I started a new regimen which included the following:

Fuzeon
Kaletra
Invirase
Viread
Epivir

My counts, if my notes are correct, at that time were:

CD4--291
CD4%--8%
VL--360

While my VL was obviously really low, the cd4 absolute and cd4 % were the lowest values I had ever had since I started keeping track in 1988 (yes that's 1988--god I am so anal retentive!)  But my strategy from the very beginning was to be aggressive.  Obviously that didn't always work in my favor (see note about using drugs on mono-therapy) but yet despite everything here I am--still.

So yesterday maked my 3 year anniversary on the regimen I mentioned.

My last labs:

CD4--879
VL--<50 (maximum viral suppression)

I've been around the block with this virus a time or two.  I remember those days, days which most of you will thankfully never ever have to experience.  But yesterday I marked yet another miletone.  Someone who theoretically had "no treatment options", has not only found one, but has continued to win the war.

I am optimistic.
I am grateful for the suggestions I was given here.

MOST IMPORTANTLY

I'm happy.

RAB

PositivelyYours

Diagnosed: 08/10/2006
08/31/06 CD4:240/VL:39,000
09/12/06 CD4:359/VL:50,000
11/16/06 CD4:509/VL:76,000 (Flu Shot)
02/13/07 CD4:270/VL:69,000
02/17/07 Developed the Shingles
02/20/07 CD4:326/VL (Not Tested)
03/20/07 CD4:484/VL:54,000
06/19/07 CD4:488/VL:51,000
09/18/07 CD4:372/VL:27,000
10/09/07 Took Flu Shot
12/18/07 CD4:408/VL:85,000
03/18/08 CD4:394/VL:116,000 (Still No Meds)
05/22/08 CD4:412/VL:63,000
08/13/08 CD4:362/VL:67,000
09/23/08 Took Flu Shot
10/15/08 CD4:340/VL:54,000
11/14/08 Started Atripla @ 9:45 p.m.
1/30/09 CD4:641/VL:<48 Copies
5/07/09 CD4:667/VL: Undetectable
12/02/09 CD4:759/VL: Undetectable
03/05/10 CD4:537/VL: Undetectable
03/16/10 Rec'd TB Skin Test, Pneumonia & Hep B Vac
04/15/10 Hep B & Tetanus Vac
6/10 CD4: 748 VL: Undet.

Offline aztecan

  • Member
  • Posts: 5,530
  • 36 years positive, 64 years a pain in the butt
Re: 3 years and it still works
« Reply #25 on: December 25, 2006, 08:43:38 pm »
Rocky,
When I saw the title of this thread, I envisioned something else!  ::)

You're success is fantastic. Keep it up kiddo!

BIG HUGS,

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

Offline Cliff

  • Member
  • Posts: 2,645
Re: 3 years and it still works
« Reply #26 on: December 26, 2006, 10:14:36 am »
Congrats on 3 years Rocky!!!!  Well put post and very inspirational.  You are one of my personal heroes.

Offline gerry

  • Member
  • Posts: 522
  • Joined AM Feb 2003
Re: 3 years and it still works
« Reply #27 on: December 26, 2006, 01:48:21 pm »
Hi Rocky:

It's been three years, hasn't it?  Time flies really fast!  I remember that was the year we got introduced through the former version of this website.  I vividly remember the anguish you had at that time when Fuzeon and PIs were about your only options left.  Although we really never spoke about it, I can sense it was heavily weighing on your mind (because if it didn't work, there was nothing left to try).  All you wanted was to know what was the best option with what's available.  It was really good that you had gotten reassurance from Dr. Gallant (bless his heart) from Hopkins through his website regarding the new direction that you were about to embark on.  Fast-forward 3 years later to the present time, and you are looking at potentially more options when the newer drugs arrive, perhaps as early as next year or so.

The one thing that I always knew would work in your favor was, as much as this virus had wanted to take away, you had continually fought back to not give an inch to it.  It's been a tough couple of decades and you have all sorts of battle scars along the way, but in spite of these, you're here and you're happy and that's what matters most.

Here's to you looking forward to the new year and many more years to come after that.

Gerry

 


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