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Author Topic: Support Needed: REALLY Bad Lab Results  (Read 9889 times)

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Offline odyssey

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  • Posts: 784
  • Mutiny of the neurons!
Support Needed: REALLY Bad Lab Results
« on: October 21, 2011, 10:18:52 pm »
Okay folks, I'm needing some emotional support and camaraderie from my poz.com buddies. I had my labs drawn Tuesday and I called to find out my results today in advance of my Tuesday appointment with my ID doc. My counts in July were CD4 of 568 and 30% with VL of around 180,000 and then 94,000 two weeks later. My counts this week were CD4 of 324 and 20% and VL of around 84,000.

Yep, that's right folks.... my CD4 absolute count dropped by 244 and my CD4 % dropped by 10 percentage points. I wasn't sick at the time of my labs, nor was I sick recently or since. I think the whole "log" change is used for VL, but I have a feeling that my drop is pretty severe.

I'm pretty anxious and upset. I don't know whether my doc will want to start meds right away or wait for one more round of results to see if these levels persist. Its just scary having levels this low.

I'd appreciate support, advice, anything my buds can provide. This is just a hard time and I have to go through the whole weekend, Monday, and half a day Tuesday before I talk to the doc. I kind of wish I hadn't called to find out my results, lol.

odyssey
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline PozJeepGuy

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Re: Support Needed: REALLY Bad Lab Results
« Reply #1 on: October 21, 2011, 11:23:18 pm »
Are you currently off meds?
Jake

Offline odyssey

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  • Mutiny of the neurons!
Re: Support Needed: REALLY Bad Lab Results
« Reply #2 on: October 21, 2011, 11:25:25 pm »
Yeah, not on meds here.
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline PozJeepGuy

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Re: Support Needed: REALLY Bad Lab Results
« Reply #3 on: October 22, 2011, 01:10:18 am »
The reason I asked is I too stopped. My cd4 did the same same thing dropped about 300 and then leveled out. From what I have been told this is normal
Jake

Offline spacebarsux

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Re: Support Needed: REALLY Bad Lab Results
« Reply #4 on: October 22, 2011, 02:39:39 am »
Yo Odyssey. Here's a big hug!

I totally understand your anxiety resulting from the drop in your numbers.

Looks like it's time to start meds.  

Good luck buddy.

PS- And your Lab results are not "REALLy bad"
« Last Edit: October 22, 2011, 02:51:14 am by spacebarsux »
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 mecch

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  • red pill? or blue pill?
Re: Support Needed: REALLY Bad Lab Results
« Reply #5 on: October 22, 2011, 05:47:58 am »
I'm pretty anxious and upset. I don't know whether my doc will want to start meds right away or wait for one more round of results to see if these levels persist. Its just scary having levels this low.

Where are you in the process of accepting that eventually you will go on HAART?  Is HAART affordable? 
If you have come to accept that HAART is the key, when its time, to a healthy life, and HAART is affordable, than what exactly is scarey about this situation?  You recently had numbers where you didn't need them. Now you have numbers where you might need HAART.  I guess you can monitor closely to see the trend, and not take HAART yet.  Or start the HAART now.

Please explain the anxiety and fear.  Seems normal, just wondering exactly what is causing each. Then maybe people can respond. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Theyer

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  • Current ambition. Walk the Dog .
Re: Support Needed: REALLY Bad Lab Results
« Reply #6 on: October 22, 2011, 07:44:04 am »
Well Off course your currently distressed and upset.The lab results are our marker,they assume a sort off scientific crystal ball, if they drop danger if they go up Joy and congratulations from all.
But we all so know it is not as clear cut as that, and you know that too dear Odyssey. Before you got your numbers how where you feeling ? that to me is the most accurate marker here.

Before we had drugs, one off my Docs would say the same thing before he gave out the results.
It does not  matter what these numbers are ,the important point is how are you feeling now..Other experiences include------
After the clinic  changed testing labs and for some reason everyone had lower results  another instance ,This has happened twice , all off us tested on a certain day where called back because the lab did not trust there results.

Then there was the dawning within myself that I had been feeling ill and had great results and i had been feeling great and had lost half off my t-cells.  (this was before V/L )

So it was the trend that became important.I knew this intellectually but I still had to learn it through experience. Now all i really want to know is my V/L and is anything else starred-----UKlab readings have a star if result outside whats considered average----

I hope these personal reflections help, cyber hug to you and I ask again how where you feeling fore you got the results?

love
mhtv
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline emeraldize

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Re: Support Needed: REALLY Bad Lab Results
« Reply #7 on: October 22, 2011, 08:38:29 am »
Hi Odyssey,

I hope you can feel as if questions indicate support -- I see you were on meds and stopped. May I ask why you stopped meds, and, was your doc on board with that?

Em

Offline skeebo1969

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  • Posts: 5,931
Re: Support Needed: REALLY Bad Lab Results
« Reply #8 on: October 22, 2011, 09:28:12 am »


  Ody,

      The % drop is a bit concerning.

      I was one of those who put off going on meds because of anxiety/fears about what the meds would do to me.  When my numbers were about what yours are now my then ID doc advised me it was time.  I balked and she conceded.  When my % dropped in the 15% range is when things happened rather quickly for me, the drop I mean.   My numbers dropped from the 600 range to 103 within 5 months.

      Now, of course, those are just numbers and everyone is different. 

      The biggest indicator for me though was how I felt at the time.   I had absolutely no energy and was constantly sick.  It did not take much convincing from my doctor when my labs came back with Cd4's of 103 and a % at 9.  I went on them immediately.  I really had no choice because the possibility was very near that I would face something life threatening if I did not.

      I guess what I'm getting at is I should have prepared myself better initially.  My biggest complaint at the time was the bactrim and not the HIV meds.  And the only reason I had to take bactrim was because my Cd4's were below 200.  I still don't know how people manage that stuff for years.

       So, back to you, what have you been up to?  Have you in any way tried to prepare yourself for the day you might need to start? 
I despise the song Love is in the Air, you should too.

Offline denb45

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  • "1987 Classic Old School POZ+"
Re: Support Needed: REALLY Bad Lab Results
« Reply #9 on: October 22, 2011, 10:40:22 am »
Here a Big Fat Naked HUG for ya  :-* maybe it's time to start Meds, your VL will never go down without the Meds, but, that is just my opinion nothing more, ask your Doctor , and here's another HUG for ya are Hugs GREAT, hang-in-there ok  :-*
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline WillyWump

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  • Posts: 7,367
  • EPIC FIERCENESS!
Re: Support Needed: REALLY Bad Lab Results
« Reply #10 on: October 22, 2011, 10:52:28 am »
Hey little buddy,

You need to start thinking about going back on meds, this drug holiday you're on will not last forever.

-Will
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Theyer

  • Member
  • Posts: 2,701
  • Current ambition. Walk the Dog .
Re: Support Needed: REALLY Bad Lab Results
« Reply #11 on: October 22, 2011, 01:32:22 pm »
Hello again Odyssey,

I wrote my reply to you unaware that you are on a drug holiday, I am sorry that the out come you had wished for has not been met by your results. You presumably have been here before when you decided to start meds.

For my generation starting drugs did not represent anything but hope that had been denied to us till that time but more tragically our dead loved ones who missed out on combos.

As Meech asked, I will need to read more about why you do not want to take meds before I can make any other comments than I am sorry that your drug holiday needs to be reevaluated. I will keep an eye on your thread,hope you are reading this in a better state off mind than when you started it.
mhtv
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Lou-ah-vull

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  • Posts: 1,029
Re: Support Needed: REALLY Bad Lab Results
« Reply #12 on: October 22, 2011, 02:28:25 pm »
Ody,

While no expert, I am guessing they will want to do another retest of labs in a while (month? three months?) to see if this is an anomaly from going off meds or not.  As others have said, one of the key immediate indicators is "how you feel" right now.  It is good sign that you are not feeling symptoms other than your concern about these numbers.

I remember the debate you were having about going off the meds and you had given things some very serious consideration (meaning you did not do this on a whim or lightly.)  Let us know that your doctor thinks...hoping that things will level off and you can decide on your own, when and how long your meds holiday will last.

We'll watch your back!

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 wolfter

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  • Posts: 5,470
Re: Support Needed: REALLY Bad Lab Results
« Reply #13 on: October 22, 2011, 02:56:46 pm »
Sending positive energy your way.  It's been well documented here how I feel about drug holidays so I won't address that since you researched and did your due diligence before deciding.  Best of lucky buddy!

Wolfie
Being honest is not wronging others, continuing the dishonesty is.

Offline anniebc

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  • AM member since 2003
Re: Support Needed: REALLY Bad Lab Results
« Reply #14 on: October 22, 2011, 05:27:42 pm »
Big hugs oddy, things will work out in the end, whatever decision is made it will be the right one, try not to stress too much.

Aroha
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline odyssey

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  • Mutiny of the neurons!
Re: Support Needed: REALLY Bad Lab Results
« Reply #15 on: October 22, 2011, 06:56:49 pm »
Wow! Thanks for all the responses. So many questions to answer.

I stopped taking meds with my doctor's consent and support because they were making me horribly ill and he had only put me on them in the first place because I was fatigued. My numbers hadn't really indicated the need. The meds actually made the fatigue worse, in addition to numerous other side effects, so we pulled the plug on that little experiment.

I'm not exactly on a med holiday. See above.

I'm working with my therapist on dealing with being HIV positive and all that comes with it. I've realized that even though I've known about my status for almost 3 years, I'm still struggling to come to terms with it.

I pretty much don't have to worry about affording HAART. I am on Medicaid, and my income qualifies me for ADAP as well. Last time I checked, my state doesn't have a waiting list. Of course, the ADAP is more of a backup, as the Medicaid ends up being the primary payer. Anyway, as long as I'm on disability, I'm set for meds.

I'm just scared because frankly I'm afraid of dying. I'm also afraid of having a really bad reaction to the meds like I did last time. I'm afraid the meds won't work and I'll die. Ugh  :(

Hopefully that covers everything everyone asked. If anyone else wants to offer any more naked hugs... I'm game!  ::)

odyssey
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline mecch

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  • red pill? or blue pill?
Re: Support Needed: REALLY Bad Lab Results
« Reply #16 on: October 22, 2011, 07:04:55 pm »

I'm just scared because frankly I'm afraid of dying. I'm also afraid of having a really bad reaction to the meds like I did last time. I'm afraid the meds won't work and I'll die. Ugh  :(

Hopefully that covers everything everyone asked. If anyone else wants to offer any more naked hugs... I'm game!  ::)

odyssey

Why would you die of HIV these days?  HAART works.  OK so if that is taken care of, then the fear is the bad experience you had last time with HAART.  Have the doctors given you any reassurance or plans to make this next try a better experience?  Its kind of rare as far as I have heard so far for HAART to produce fatigue, so early in a treatment.  There must be a work around, between HIV specialist and shrink.  It took me awhile to find a combo with no effects, and some extra "juice" via the shrink to keep a healthy mojo.  Exercise? Anti-depressants? Hormones? Speedier drugs?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline denb45

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  • "1987 Classic Old School POZ+"
Re: Support Needed: REALLY Bad Lab Results
« Reply #17 on: October 22, 2011, 07:16:41 pm »


odyssey  :-* don't be afraid of dying, my mother always told me " what doesn't kill you will only make you healthier and stronger" and as for dying as a LTS, I've died many times over, just ask some of all the other
LTS  :D  were all what's called the living DEAD  ;D   
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Basquo

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Re: Support Needed: REALLY Bad Lab Results
« Reply #18 on: October 22, 2011, 11:49:56 pm »
HUGS to you!!

It's only natural to be scared of death, especially in the first few years of diagnosis when you're still trying to digest everything.

Offline newt

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Re: Support Needed: REALLY Bad Lab Results
« Reply #19 on: October 23, 2011, 03:05:46 pm »
These are not bad results

For one, your viral load hasn't really changed (going from say 80,000 to  800,000 is a real change).

For two, even if you do need to do treatment now you have plenty of time to decide. A CD4 count around 350 is perfectly adequate. There's not a rush. You're not gonna die on the bus tomorrow.

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

Offline emeraldize

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Re: Support Needed: REALLY Bad Lab Results
« Reply #20 on: October 23, 2011, 05:59:27 pm »
Thanks so much for the explanation. I see your thread clearly now. I wish you the best moving forward and am glad you've got a doc and a therapist. And, you've got a cheering section, too.

Offline spacebarsux

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Re: Support Needed: REALLY Bad Lab Results
« Reply #21 on: October 24, 2011, 01:58:15 am »
Hey Ody, You're not going to die or anything of the sort.

I think you should punch the hell outta that little HIV stuffed toy you have. It'll definitely lessen your anxiety. Guaranteed.  ;)

Hugs.
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 aztecan

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  • 36 years positive, 64 years a pain in the butt
Re: Support Needed: REALLY Bad Lab Results
« Reply #22 on: October 24, 2011, 03:47:39 pm »
Hey Youngun,

As our Newt said, try not to get too upset. The first fiew years are an emotional rollercoaster.

Were I you, I would have a frrank talk with my doc, see what he/she thinks then think about how that would fit into your life.

Meds are a comittment, and regardless of how effortless they may or may not be to take, you have to remember and want to take them.

So, take a few deep breaths and remember you have us here to support you whatever you decide.

HUGS,

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

Offline Joe K

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  • 31 Years Poz
Re: Support Needed: REALLY Bad Lab Results
« Reply #23 on: October 24, 2011, 06:21:21 pm »
Odyssey,

It's alright to be afraid as long as your fear does not consume you.  I'm going to suggest that you not play the "What If?" game about your future, because as Newt said, you are not going to die anytime soon.  Let yourself feel what you feel and try to remember that just because you feel something does not make it real.  You know that stress is not good for you, so take some time and do something that you truly love.  Be good to yourself and you know that we are always here if you need us.

Joe

Offline Jody

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Re: Support Needed: REALLY Bad Lab Results
« Reply #24 on: October 24, 2011, 08:20:09 pm »
Good luck with your doctor's appointment Tuesday Ody and keep us posted.  Be well friend.

Jody
"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 odyssey

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  • Mutiny of the neurons!
Re: Support Needed: REALLY Bad Lab Results
« Reply #25 on: October 25, 2011, 08:26:55 pm »
My doctors appointment went well. We are repeating my CD4 which I should know the results of by Thursday. If my second result is still low, I'll be starting meds (Truvada/Reyetaz/Norvir). If the test shows it was a fluke we might consider meds anyway or will probably continue to monitor things.

I'm honestly kind of hoping the count is low again so I can start meds. The dread and waiting for meds is stressing me out. It would be nice to see my numbers improving instead of fearing the eventuality of them going down.

Thoughts anyone?
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline buginme2

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Re: Support Needed: REALLY Bad Lab Results
« Reply #26 on: October 25, 2011, 08:31:40 pm »
I do not wish your numbers will be low however, if you do start meds I agree that the stress you are feeling about the anticipation of being on meds will end.  The vast majority of times its smooth sailing, and will most likely be for you too.

Plus it is nice to get to see your cd4 counts going up instead of down.
Don't be fancy, just get dancey

Offline odyssey

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Re: Support Needed: REALLY Bad Lab Results
« Reply #27 on: October 31, 2011, 01:13:21 pm »
Well folks, my doctor called me Thursday evening and my second set of results came back and the news wasn't in my favor. My CD4 absolute count was around 382 and the percentage was 22%. Craptastic!

So, Friday morning I picked up my meds at the pharmacy. That's another $2300 I can't leave to my family when I die.

I'm back on the Truvada, Reyetaz, and Norvir that I was on a few years ago. The first few days have been okay, although I'm sort of dizzy and I think my skin might be a tad yellow (although I'm not sure). I'm trying not to think about having to take these godawful pills for the rest of my life because when I do it just brings me down emotionally. Ugh!

That's the update folks! I will be getting more bloodwork in a couple weeks I think to see how the drugs are working.

Has anyone else turned yellow on these meds?

odyssey
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline Grasshopper

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Re: Support Needed: REALLY Bad Lab Results
« Reply #28 on: October 31, 2011, 03:27:38 pm »


Has anyone else turned yellow on these meds?

odyssey

Yes I have, but only for a very very short time.

The brightside of taking HAART again is, that you don't have to worry anymore about declining CD4 count or high viral loads.

How does the saying go again ?   3 pills (HIV meds) a day keeps the virus at bay ?

Offline mecch

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  • Posts: 13,455
  • red pill? or blue pill?
Re: Support Needed: REALLY Bad Lab Results
« Reply #29 on: October 31, 2011, 05:10:28 pm »
I'm trying not to think about having to take these godawful pills for the rest of my life because when I do it just brings me down emotionally. Ugh!

Well glad to hear you followed the doctors orders.

Is there any hope that you might change this attitude someday, somehow?  The pills are lifesavers but your attitude toward them is emotionally destructive to yourself!  Think about it.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline WillyWump

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  • Posts: 7,367
  • EPIC FIERCENESS!
Re: Support Needed: REALLY Bad Lab Results
« Reply #30 on: October 31, 2011, 07:03:29 pm »
So glad you are back in track Ody.

I doubt any of us particularly 'like' to take the pills, but they are keeping us alive...  :-*

-Will
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline odyssey

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  • Posts: 784
  • Mutiny of the neurons!
Re: Support Needed: REALLY Bad Lab Results
« Reply #31 on: October 31, 2011, 09:38:28 pm »
mecch-

I'm just in the beginning stages of dealing with being on meds. When I was on them before I was so unable to cope with the emotional consequences that I became psychotic. I don't think its fair to expect me to go from thinking I would have another 12 months at least to get ready for the day I would need to start meds, as my doctor told both myself and my therapist that I would have prior to these most recent labs, and suddenly having my immune system collapse to the point of needing drugs the next week.

Forgive me if I'm not jumping for joy. I'm still coming to terms with both my diagnosis, my status, and now, having to take these meds if I want to live.

odyssey
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline 7359915653

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  • Posts: 17
  • Imagine
Re: Support Needed: REALLY Bad Lab Results
« Reply #32 on: October 31, 2011, 10:50:49 pm »
I'm saying this only out of caring for those of us who are HIV positive.  The virus, although it may be low without HAART leaves traces of itself (sort of waste product) which causes issues for tissue at the cellular level.  This in turn goes two ways, persistent inflammatory issues especially in the gut which in turn is transferred into the circulatory system, thus an immediate build-up of plaque in your arteries around your heart (thus the reason we succumb to heart attack at a higher prevalence rate than those who are without HIV).  This weakens a man. 

Another reason is that the virus although it is somewhat controlled by your body is high in number through out your body and does enter the central nervous system.  This in my experience particularly when you have excited the central nervous system through use of an amphetamine.  Although I had very low VL numbers I began to feel tingling in my hands and feet consistently until I took the Epzicom and Selzentry.  It went away.  So for those of you who think waiting is a prudent thing to do, consider that the virus is tearing your insides up (inflammation).  A guy I met began to have heart issues he said "my chest started hurting" as he pointed to the center of his chest.  He was tested at 100K+ VL when he decided to actually get tested after losing a lot of weight. 

Bottom line, its better in the long run to begin right off especially if you have low VL numbers otherwise that virus' mitochondrial engines will begin to use up your resources (fat, muscle, food, etc...called wasting), thus you will feel tired and weak because like a leach its eating your energy up because you have to many in your body.  Remember 100K actually translates into 10 billion in your body - thats ten billion little energy suckers leaving their tailpipe emissions (inflammation) through out your body, converting cells from healthy normal cells to precancerous or cancerous cells. 

Start HAART ASAP.

I was under the impression that once you start Truvada, Reyetaz, Norvir that if you stop the virus mutates and thus these medications no longer are effective against the virus? 
05/17/2011 - Dx
VL 2422 copies/ML; 1100 CD4/ waiting on appointment with HIV specialist.
08/31/2011 - <60 copies/ML; 750 CD4/46.4% CD4..
03/29/2012 - <20 copies/ML not detectable; 904 CD4/47.6%

Offline 7359915653

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  • Posts: 17
  • Imagine
Re: Support Needed: REALLY Bad Lab Results
« Reply #33 on: October 31, 2011, 11:01:37 pm »
Oh also, this is my experience and probably lightly researched but it seems with the Epzicom and Selzentry there has been a metaphoric highlighter placed upon my psychological experiences.  If I'm stressed it becomes 3X greater than normal.  So, I've learned you MUST be very careful of your mental health because if you have an underlying mental health issue such as a low grade depression, this medication will bump it up a bit for some reason---just my theory. 

A person on HAART must address their anxieties, emotions and fears otherwise a metaphoric highlighter will be placed upon them I believe by your HAART.  Could depend on the meds? 

Thank gawd I've fallen in love and have a very supportive man in my life because had I known about the mental health problems coming around the corner due to work stress and the magnification HAART seems to place upon my psyche, I would have gotten in therapy right off back in May when I was identified. 

Think positive and hang on for dear life my friend. 
05/17/2011 - Dx
VL 2422 copies/ML; 1100 CD4/ waiting on appointment with HIV specialist.
08/31/2011 - <60 copies/ML; 750 CD4/46.4% CD4..
03/29/2012 - <20 copies/ML not detectable; 904 CD4/47.6%

Offline odyssey

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  • Posts: 784
  • Mutiny of the neurons!
Re: Support Needed: REALLY Bad Lab Results
« Reply #34 on: October 31, 2011, 11:07:40 pm »
You claim to know everything about how the virus works but you don't know the basics of how resistance does and does not develop? PLEASE, leave giving medical advice to the doctors, mine included, and never again accuse me of using amphetamines!

odyssey
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline mikejh

  • Member
  • Posts: 42
Re: Support Needed: REALLY Bad Lab Results
« Reply #35 on: November 17, 2011, 11:08:49 pm »
Hi Odyssey,
You will be fine this time, work with your therapist and things will work out.
I was in the same situation scared like he'll and when I thought I had accepted my status I got cancer and other
complications  but had an excellent therapist and I feel great now I take atripla for my HIV and 13 other Meds a total
Of 23 pills a day.
Mike :-*
CD4   %
22 Sep 06   37     5  Started Atripla
5   Oct 06   82     9
1   Dec 06  258   13
25 Jan  07  263   14
1   May 07  403   18
6   Aug 07  438   22
7   Nov 07  417   19
30 jan   08  310   19
7   May  08  285   20
6   Aug  08  472   27
12  Nov 08  444   26
11  Feb  09 335    19
10  May  09  460  25
Jan 10 575 u/d
Feb 11 590 u/d
June 12 625 u/d
2013 646  u/d
2014 580 u/d
2015 590 u/d
2016 635 u/d
2017 620 u/d change to Genuvia
Jan 2018 580 u/d changed Triumeq
Feb 2019 620 u/d
March 2019 change

 


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