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Author Topic: Bad Results -- Feeling Very Down - Updated for Jan 29  (Read 7970 times)

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Offline bocker3

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Bad Results -- Feeling Very Down - Updated for Jan 29
« on: January 26, 2007, 11:36:17 pm »
Hi gang,

Just got another bad Viral Load result -- going in the complete opposite direction of undetectable here.  Last time, I jumped from the 100's to 458, this time all the way up to 1600.  I'm so disappointed, upset, a bit scared and utterly frustrated.  My 2 genotype tests indicate that my regimen SHOULD work, I am 100% adherent, I'm doing everything I can to be healthy (alright, I'm still a little overweight, but.....).  I was in tears when I finished talking to my doctor.  As I swallowed my Atripla tonite, I cursed it out and thought why am I bothering (don't worry, I will keep taking it) and will probably do the same in the morning when I take my Reyataz/Norvir. 
Of course, my mind has been swinging back and forth between positive thoughts (lots of options out there, good tcell count, feeling good, etc, etc) and thoughts of despair (I'm taking 3 classes of drugs -- I'm fucked now).  I'm sure it will get better with time -- mentally, I mean.  A friend of mine gave me an Ativan, to help my sleep tonite.  At least I got to see Serena Williams win the Australian Open tonite!!
I'm seeing my doc on Monday -- going to get a Genotype and Phenotype drawn (and get my own Ativan script).  Hopefully he'll help center my thoughts a bit.  I leave for San Diego to visit my daughter and 3 grandkids on the 9th of Feb, then a few days in Hawaii -- so I won't get any results until I return from a much needed vacation.  I guess we'll figure out what to do at that point.
Anyway -- the Ativan and the Sustiva are kicking in, so I'm off to bed.  I'll probably come dump some more in the morning. 
Thanks to all of you for being here.

Hugs (and tears.......)
Mike
« Last Edit: January 29, 2007, 08:01:59 pm by bocker3 »

Offline AlanBama

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Re: Bad Results -- Feeling Very Down
« Reply #1 on: January 26, 2007, 11:41:51 pm »
I'm sorry to hear that Mike.   Sometimes there just doesn't seem to be any rhyme or reason to the way the numbers go.

Enjoy your family time, enjoy the vacation, and let's hope for better results next time.

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 Miss Philicia

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Re: Bad Results -- Feeling Very Down
« Reply #2 on: January 27, 2007, 12:00:40 am »
Well, while your numbers are trending in the wrong direction a VL of 1600 is not dreadful.  I managed to live for years with a stable VL of 30,000 due to no other options with my PI resistance but my doctors accepted it because it didn't fluctuate.  I'm not a doctor but your cd4's are OK and more important to me is that your percentage is trending upward.  If that was going down too I'd worry some more, but it's not.  I wouldn't be surprised if they keep you on this regimen until your VL goes a bit higher, just to exhaust this particular cocktail before moving to the next one.

Did you expect never to have to switch meds?  I'm assuming this is your first regimen.  I've lost of how many times I've switched.  It's not a big deal as long as the numbers are in decent territory and not dropping like a rock, which yours are not.  Relax and sleep well, you have a lot of other options assuming your genotypes come back OK.
"I’ve slept with enough men to know that I’m not gay"

Offline ndrew

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Re: Bad Results -- Feeling Very Down
« Reply #3 on: January 27, 2007, 01:40:32 am »
Hi Mike,

I am sorry.  I dunno anything, but maybe its some stupid lab error?  Wishin' u well.  Keep up the good work, it will pay off.

Drew

Offline yowsaa

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Re: Bad Results -- Feeling Very Down
« Reply #4 on: January 27, 2007, 02:53:10 am »
Hiya Mike,
Is this your first med combo ? If you had Geno & Pheno tests before what were those results ?
Hope Newt and the other med gurus will chime in here.

Try not to get down my friend, we'll do some tinkering and get this straightened out where you'll be saying "surfs up" in no time.

Aloha   ;)

Offline newt

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Re: Bad Results -- Feeling Very Down
« Reply #5 on: January 27, 2007, 03:17:34 am »
I commented before. :D):

What phillly267 said about the CD4% etc.

I am interested to see the geno and pheno results when they're in.  Meanwhile, have a good holiday, Mike.

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

Offline bocker3

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Re: Bad Results -- Feeling Very Down
« Reply #6 on: January 27, 2007, 08:31:01 am »
Good morning,

I slept well and am feeling a bit better - amazing what a tiny little pill can do  ;D

To answer a few of the questions posed:
This is (sort of) my first combo.  Started with Sustiva/Truvada and then added the Reyataz 6 months later.
My initial genotypes (done first before starting any drugs and then repeated just before adding the Reyataz) were exactly the same:
NRTI mutations- 41L, 208Y, 211K, 215S
NNRTI mutations – NONE
PI mutations – 36I, 63P, 93L
So, things looked like adding the Reyataz should work -- with the plan of dropping the Sustiva once I hit undetectable.

A hearty thanks to everyone who has chimed in -- what I love most about this site is that we are all here for each other.  Sometimes gaining perspective is the hard thing at the individual level.  I do, of course, know that my overall lab results are doing very well (cd4 abs and %) and that a VL of 1600 is far lower than many others have -- and quite a bit lower than my initial 98,000+.  If you have followed my past posts, you'll know that these results which are going in the wrong direction, do tend to spin my head for a day or two.  Some may use the term "drama queen", but it's not my favorite  ::) .
So, I just keep taking my meds, and going on with living, while I wait for a genotype repeat and a first phenotype test.  Then we pick the drugs which my virus seems to dislike the most!!  And of course 4 days in San Diego with grandkids jumping all over me, followed by 5 days in Maui, should have cut the stress of waiting.
Oops, my alarm is telling me its time for my Reyataz -- I'm off to eat breakfast.

Thanks again.

Hugs,
Mike

Offline Blixer

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Re: Bad Results -- Feeling Very Down
« Reply #7 on: January 27, 2007, 08:48:19 am »
Mike,
I can understand how you feel. I know I'd be very frustrated, scared.. feeling like you do.  The additional genotype and pheonotype testing should help isolate the issue I would think.  As has been said, your other numbers still look ok.  I'll be sending good thoughts your way!

Hugs
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 Ann

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Re: Bad Results -- Feeling Very Down
« Reply #8 on: January 27, 2007, 08:56:22 am »
Hi Mike,

It may be worth bearing in mind that viral load tests can return what may be termed as "false positive" results. VL tests are sometimes used to try to determine whether a person is actually infected or not, but this is something we don't recommend over in the Am I forum because of the high rate of false positive results.

A false positive result on a VL test typically shows low numbers, just like yours. This is likely the main cause of viral "blips" that people on treatment experience. You may have had the unfortunate experience of having two of these false detectable results in a row.

Considering your genotypes have come back ok and you've been adherent, I would try to get another VL done sooner rather than later and hope it's "third time lucky" for you and your result returns with a big fat undetectable.  

Hang in there and keep us posted.

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 bocker3

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Re: Bad Results -- Feeling Very Down
« Reply #9 on: January 27, 2007, 09:51:03 am »
I appreciate all the support.  Given the fact that I've been taking meds for over a year -- and the "intensified" regimen for over 7 months and have never had an undetectable results -- I find it hard to believe that either "lab error" or "false positive" are possible explanations.  I would love to be wrong and have it be true -- but if it is, I am having a tremendously long period of bad luck  ;D .  Now don't get me wrong, I do truly appreciate all the words of hope and support -- please don't stop!  I guess it becomes a waiting game now -- I'll get the resistance tests drawn on Monday, then we wait.  In the meantime, I'll continue to be thankful that I am living in a time of numerous options.

 :-*  :-*,
Mike 

Offline RAB

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Re: Bad Results -- Feeling Very Down
« Reply #10 on: January 27, 2007, 10:52:13 am »
Hi Mike

I know how frustrating this is for you.  Especially since you've done absolutely everything you can to achieve viral suppression.  I agree with your observation that it's probably not lab error.

The key will be the results of the Pheno/Geno.  The only other thing I can think of is maybe there's an absorption problem.

But as nearly everyone has noted, your immune system is in good shape so there's nothing to panic about.  Enjoy the grandkids and Hawaii.

Wishing you the best.

RAB

Offline Miss Philicia

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Re: Bad Results -- Feeling Very Down
« Reply #11 on: January 27, 2007, 11:15:36 am »
I refuse to feel sorry for anyone going to Maui
"I’ve slept with enough men to know that I’m not gay"

Offline northernguy

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Re: Bad Results -- Feeling Very Down
« Reply #12 on: January 27, 2007, 11:30:34 am »
Sorry to hear about your worry, as more knowledgable minds have chimed in, things may not be as bleak as you think.  If I might also add, you've mentioned some good reasons not to despair: your daughters and grandkids.  (I've resigned myself to not having either).

I've got ativan for flying, its great stuff but be careful, it can be addictive.
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline blondbeauty

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Re: Bad Results -- Feeling Very Down
« Reply #13 on: January 27, 2007, 11:43:45 am »
Everything is very strange...your meds should be working but you are still not undetectable...What is going on? What does the Dr say? What about going to another Dr.?
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 bocker3

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Re: Bad Results -- Feeling Very Down
« Reply #14 on: January 27, 2007, 11:50:32 am »
Hi RAB,
I've also been wondering about an absorption issue -- or an overly efficient liver removing the drugs too quickly.  I've asked about TDM, but my doc seems a little resistant to this -- it seems to be exceedingly rare int he US.  However, if the Geno/Pheno doesn't shed light onto what has gone wrong, I will be insisting on it -- even if I have to pay out of pocket.  I am grateful that my immune system has bounced back so tremendously -- it's one of the reasons I am somewhat calm about all this (you all are another).

Hi Philly,
You don't need to feel sorry for my trip to Maui -- I'm willing to sacrifice and do the hard work of travelling for those that have to remain in the winter cold    ;D .

Hi Northernguy,
I can't wait to see the kids....  my partner and I love spoiling them -- my baby making days were over long ago (you know, because of the whole -- I have a male partner, thing), so it is so great to have them -- even if they are on the other side of the country.  Plus -- it's fun being a 42 year old grandpa (I was 15 when my daughter was born).  Thanks for the Ativan warning -- I've taken it about 25 times in the last 17 months -- I am a recovering alcoholic, so I use these things sparingly, but sometimes it is just what I need.  I always ask for no more than 10-15 pills with no refills.  This will be the third request since I tested positive.

Hi Blondbeauty,
It sure as shit is strange -- Doc is baffled too, but I think we both feel a new geno and especially a first pheno test should help us sort things out.  If things remain "strange" after this -- I will be looking to get a 2nd opinion from a doc up in D.C. or maybe Johns Hopkins, but I think I have one of the best ID docs in Richmond.

Thanks again to everyone -- I think I can actually feel your good wishes!

Mike

Offline poet

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Re: Bad Results -- Feeling Very Down
« Reply #15 on: January 27, 2007, 05:15:28 pm »
Mike, you are much better, as your posts have shown for others, than me on this.  I do see that the viral knockout never occured, at least according to viral load results.  I do know that I have taken Norvir because it interferes with the liver processing drugs along, slowing things down which you alude to as well.  I also understand the frustration: it should work, it does work for others, what is wrong with me?  Let's hope some more post possibilities for you to work with.  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 Sweetness06

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Re: Bad Results -- Feeling Very Down
« Reply #16 on: January 27, 2007, 06:59:23 pm »
Hi;
I just read your post and I am very sorry. I can relate to what you are going through up to one point.
I am HIV positive however, Friday afternoon I was called to a phone conference and was told the awful news.
my CD4 count has dropped drastically and my viral load has jumped up.

my CD4 = 54
my VL = 10,184.00

I am not on meds because, I thought because I felt that I could do fine without them. I made the wrong decision.  I know that now.

Please know that my prayers are with you. I would like to keep in touch with you because maybe I can learn the right way by following your example.

Sweetness06
THE DOCTOR GIVES THE WORD BUT GOD IS IN CONTROL

Offline RAB

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Re: Bad Results -- Feeling Very Down
« Reply #17 on: January 27, 2007, 07:05:10 pm »
Hi Sweetness

Let me welcome you to the forums and say I hope you find the same support, information, and guidance here that I have for nearly 4 years.

One suggestion, you might want to start a new thread of your own so that everyone can have a chance to respond without hi-jacking bocker
's thread.

With the news on your latest counts, I suspect you're going through a lot of stuff right now and knowing the members here as well as I do I can guarantee you that you'll be overwhelmed by the support you receive.

RAB

Offline J.R.E.

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Re: Bad Results -- Feeling Very Down
« Reply #18 on: January 27, 2007, 08:10:11 pm »
Hello Mike,

Wish I could give you some information, we're all in a perpetual learning mode with this virus. Sooo, I am sending good thoughts your way, and will wait to see what results will come up with your  genotype and pheonotype tests.




Hang in there Buddy---------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.

 As of Oct 2nd, 2023, Viral load Undetectable.
CD 4 @676 /  CD4 % @ 18 %
Lymphocytes,absolute-3815 (within range)


72 YEARS YOUNG

Offline Nico

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Re: Bad Results -- Feeling Very Down
« Reply #19 on: January 27, 2007, 08:32:43 pm »
Mike,
Most has been said, but I went through a few trials and drugs over the years,  My VL would be low then high and then low again.  I can understand your frustration.   

I will tell you that Maui was the best rest both my partner and I ever had.  We had our most romantic dinner at Kimo's in Lahinia (sp).  If Elikai is still a server there ask for him.  Cute and so nice.  Make sure and buy a lai for your partner while dining. 

Have a great time with the kids.  My five nephews always make me feel so loved.

Roger
Poz since 1990.

Offline Andy Velez

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Re: Bad Results -- Feeling Very Down
« Reply #20 on: January 28, 2007, 12:36:06 pm »
Hi Sweet,

You need to know that if you need some support in information or just plain ol' talking about your situation that it's fine for you to start your own thread. There's nothing wrong with your comment here, but I just wanted to say that in case you need something specific for yourself since it sounds like for the timebeing you're living with some discouraging stuff.

We're glad to have you here.

Cheers, 
Andy Velez

Offline bocker3

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Re: Bad Results -- Feeling Very Down - Update for Jan 29
« Reply #21 on: January 29, 2007, 08:00:58 pm »
Hi gang,

I thought I'd let you all know where things stand after my doctor visit today.

After a bit of research, some input from you all, and input from Dr. Gallant at Johns Hopkins, I asked my doc to start by repeating my VL with the branched-DNA assay.  According to Dr. G, this assay is much less prone to the "false positives" that improper handling can cause.  He felt, that since I have my blood drawn by my doctor, it is possible that they aren't equipped to handle it perfectly (i.e. spin down, take off the plasma and freeze) in a timely fashion.  Now, I still thing this is a long shot, given that ALL my results would have had to be false positive, but it's worth a shot

If the bDNA assay comes back undetectable (<75), then I'm good.  If it comes back with detectable virus, I will return for the geno/pheno draw.  This should be able to happen before my vacation starts, so I can head off knowing that "things are happening" and enjoy myself.

If the repeat geno/pheno indicates that my regimen should be working, we will go with some Therapeutic Drug Monitoring to see if I'm having absorption issues or issues with my liver clearing things too quickly, etc.  Dr. Gallant was good enough to give me the name of a lab where the Reyataz and Sustiva levels can be tested -- www.specialtylabs.com.

So, I'm feeling a bit better -- and while I would have loved to do everything at once, I think the stepped approach makes sense.  I'm in no immediate danger, given my T-cells.  Of course, the Ativan did help -- as did my continued (insane) workouts with the local SealTeamPT folks (I may get buff yet!!   ::) )

Once more -- thank you all so much for you thoughts and words.  They really are helpful.

I'll keep you all posted.

Hugs,
Mike

Offline gerry

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Re: Bad Results -- Feeling Very Down - Updated for Jan 29
« Reply #22 on: January 30, 2007, 07:49:59 am »
Hi Mike,

Sorry to hear about your continuing problems with the stubborn VL.  I think you should probably just go for the geno/pheno resistance test now rather than waiting for the bDNA test.  It's not looking like a series of false positives (to me) as the VL is beginning to trend upward, which is kind of concerning, particularly since you are on a 3-class combo with some baseline NRTI mutations, and known negative interaction that can potentially cause lowered drug levels of Reyataz by both Sustiva and Viread.  It's good that you are keeping on top of this.  Keep us posted.

Gerry

Offline jack

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Re: Bad Results -- Feeling Very Down - Updated for Jan 29
« Reply #23 on: January 30, 2007, 09:52:14 am »
I have taken just about every drug and combo,including the one you are on now,which didnt get me to undetectable.  For the first time in 18 years I am undetectable using prezista/norvir/truvada, so hang in there.
I still dont know what the big deal is about undetectable. My ts never went down too much,they got close to 200 earlier this year, but have never been sick,except from the drugs.

Offline damilgin

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Re: Bad Results -- Feeling Very Down - Updated for Jan 29
« Reply #24 on: January 30, 2007, 10:32:50 am »
Hi Mike,
I am a little late in the discussion here.  Just wanted to give you some encouragement.  I have been posiitve for going on 24 years, with ups and downs, but have been doing super for the past 10 years.  My CD4 has been around 800, no viral load detectable, but when my partner of 11 years died, with all the stress, CD4 went down to 490 and viral load was detectable for the first time in a long time.  Now that the stress has subsided, things have returned to normal. 
So, do not fret over this.  Enjoy your vacation, have lots of fun and kep a good attitude.  Hopefully, after a great trip, things will begin to rise.
Take care,
David
Kerrville, TX

Offline FiercenBed

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Re: Bad Results -- Feeling Very Down - Updated for Jan 29
« Reply #25 on: January 30, 2007, 11:01:18 am »
dude.....im in the exact same situation! first regime 7 months and still not suppressed. AND THEREZ NO REASON FOR IT. iv had the 2nd genotype and it shows NO resistance. what the fuck is up w/ that? as we all know there supposedly is only 3 reason why treatments fail; resistance, toxicity, adherence. since therz no medical reason for the 1st two; everybody keeps saying....."your not taking your medication". iv become a smart ass about it. no im not....im collecting the kaletra bottles for a matching set of book ends. IV NEVER MISSED A DOSE...u idiots...lol. lets try something new can we please?

apt w/ dr wizard this wednesday. and itz gonna b ugly. my doc is an egotist. he keeps saying im just trying to prove him wrong. well @ the end of the day when u tell me u dont know what the problem is .....yea im trying to prove u wrong. he wants to dump sustiva on top of the whole mess.

well iv got some cards in my pocket. hez gonna call nih <800-441-1222> and ask for some help. hez gonna call the doctors line @ abbott <800-633-9110 option 7> and ask them y there thousand dollar poison isnt working. he refused the first time i asked.

if not im gonna grab my file and catch another train! dont look @ it as bad results.....i look at it as a challenge to find the right answer. im in 'ck' mode.....no not calvin klien.....cure me or kill me.

so from one medical oddity to another keep up the good fight! keep us posted.

Offline newt

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Re: Bad Results -- Feeling Very Down - Updated for Jan 29
« Reply #26 on: January 30, 2007, 11:18:49 am »
There is a 4th reason why treatment fails and that is drug absorption (ie physiological/pharmokinetic/pharmogenomic factors).  This may be especially true for people on 1 x day Kaletra (where the obvios thing is to swicth to 2 x day as first try at improving things)

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

Offline Life

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Re: Bad Results -- Feeling Very Down - Updated for Jan 29
« Reply #27 on: January 30, 2007, 12:08:34 pm »
Mike,  I am saying some prayers for you sweetie..  Know you have alot of people doing that and more!

Love,

Offline bocker3

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Re: Bad Results -- Feeling Very Down - Updated for Jan 29
« Reply #28 on: January 30, 2007, 09:23:45 pm »
Thanks all -- your good wishes mean alot.  I really am doing much better, mentally.  Now, if my boss would just leave me alone until my vacation starts...........  >:(

Seriously -- I'll post an update next week before I leave, because when I'm on vacation, I'm gonna try and stay away from the computer!!

Oh yeah -- Eric -- good to see you back!!  I know you needed that getaway, but I missed you!  Good to see that Will didn't drain you of all energy!!

Hugs,
Mike

Offline FiercenBed

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Re: Bad Results -- Feeling Very Down - Updated for Jan 29
« Reply #29 on: February 03, 2007, 04:49:24 pm »
touche' newt....im an example of lack of absorption. they need to add that to the department of health & human services current 3 reasons of viro failure.

 


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