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Author Topic: Upset over latest labs  (Read 1664 times)

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Offline DanMo

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  • Finally undetectable! ;D
Upset over latest labs
« on: November 28, 2011, 10:50:24 AM »
So this morning I go in to my doctor's appointment to receive the results from my last labs on 3 Nov 2011. I notice right away that something is not to the doctor's liking because he's flipping through the pages and he's reviewing what my last viral loads were... So, he tells me that my latest viral load is at 645. I was expecting to be undetectable. My doctor was expecting me to be undetectable as well. He said that it was unusual for me not to be undetectable given my history (after just 30 days on Atripla, my VL went down from 78+K to 1,938).

He started asking me about how many times would I say that I've missed a dose, I told him never! And that's the truth! He asked several different ways trying to get me to say that I've missed doses, but It's true, I haven't missed any doses at all! I can honestly, truthfully say that I've been 100% adherent to my regimen. I did tell him that I don't take it at exactly the same time every night. I take it right before going to bed, which is often at different times.

He told me not to worry, that I probably just have a tough virus, but just the fact that he was surprised that I wasn't undetectable by now made me worried! (Especially since I've heard from so many people that I should be undetectable by now, and that I know other guys that started at the same time as me are undetectable as well). I'm such a mess right now! I would really like some insight from you guys here on the forum. What do you guys think? How unusual is this? Is it unusual?

He ordered another set of labs in 4 weeks. I asked him what the course of action would be if those came back as me being undetectable as well, and he said he'd prescribe another med for me to take with Atripla.

Another thing that ticked me off was that he didn't order for the CD4 to be counted! He said it was an "extra" expense that isn't really that necessary. But that he would order a full CD4/VL for the next labs. The reason I'm ticked off is that I don't even know if the virus is regaining control or if my CD4 is still well over 500.

I have such a tight knot in my stomach right now. I really wasn't expecting this. How concerned should I be if at all?

Thanks in advance for taking the time to read this post! I appreciate your input!

- Dan
“I tried to drown my sorrows, but the bastards learned how to swim, and now I am overwhelmed by this decent and good feeling.” —Frida Kahlo

11 Feb 2011 - Preliminary positive
07 Mar 11 - Inconclusive WB
14 Mar 11 - Diagnosed positive
05 Apr 11 - 355 (21%) / VL: 186,054
27 Apr 11 - 390 (20%) / VL: 285,095
06 Jun 11 - 298 (19%) / VL:  78,380
01 Aug 11 - > STARTED ATRIPLA <
30 Aug 11 - 699 (31%) / VL: 1,938
03 Nov 11 -                / VL: 645
27 Dec 11 - 559 (35%) / VL: 1,189
11 Jan 12 -                 / VL: <20
09 Apr 12 - 686 (40%) / VL: UD
11 Jul 12 - 793 (37%) / VL: 25

Offline wolfter

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Re: Upset over latest labs
« Reply #1 on: November 28, 2011, 11:06:58 AM »
Concerned that your vl is down to 645 after 3 months on meds?  That's something to celebrate, not stress over.  As long as you have a continued downward trend, I'd stay the course.  You can't base your individual results on other peoples' results. 

Waiting 20 years to achieve undectable; now that's stressful.

Best wishes.

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Online Jeff G

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Re: Upset over latest labs
« Reply #2 on: November 28, 2011, 11:22:25 AM »
I can understand your anxiety over this but I would try not to stress too much over it . I have been on and off Atripla since it was available and have had my viral load go up and down over the years .

Initially I achieved undetectable very quickly but have seen it go up and down over the years . It took me 10 years to see a CD4 count of 500 , so all in all you are doing well I would say .   

Offline John2038

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Re: Upset over latest labs
« Reply #3 on: November 28, 2011, 11:45:06 AM »
Surprising story and reactions.  ???
Wait n see. It's too eraly to conclude now.

Online Jeff G

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Re: Upset over latest labs
« Reply #4 on: November 28, 2011, 11:47:49 AM »
Surprising story and reactions.  ???
Wait n see. It's too eraly to conclude now.

LOL ... surprising reaction to reactions I would say .

Offline wolfter

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Re: Upset over latest labs
« Reply #5 on: November 28, 2011, 11:50:49 AM »
Was there an incorrect comment or reaction? 
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline John2038

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Re: Upset over latest labs
« Reply #6 on: November 28, 2011, 12:00:35 PM »
sorry, i expressed myself in a way that can be definitely misunderstood.
I meant strange story and reactions of DanMo and his doc.
Apologizes to those who replied. I wasnt meaning these reactions.

Offline buginme2

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Re: Upset over latest labs
« Reply #7 on: November 28, 2011, 12:03:57 PM »
Hey Dan I understand your stress about it.  Try not to freak out right now.  Your virus is not " regaining control."
It could just be that it takes a couple extra months to get undetectable.   I think its reasonable for your doc not to do a cd4 count right now.  I doubt it is being affected.  It was over 600 last time. You are well over 500.  

Bottom line.  Your doing fine!

Offline newt

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Re: Upset over latest labs
« Reply #8 on: November 28, 2011, 02:05:16 PM »
1. It is very unlikely that your CD4 has dived since your last test, and it is an expensive test. Although I can see it's a comfort to know at the beginning of treatment, if you get the result you want. << if...

2. Your decline in viral load is pretty much close to textbook so far. Can take some people more than 6 months to get a test result below 50. As long as the trend is down, all is good. However, if the next test result shows your viral load is hovering around the 500s, then considering a different combo may be a good pre-emptive strike << key word here is considering

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

Offline MiniPozToyota

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Re: Upset over latest labs
« Reply #9 on: November 28, 2011, 04:07:14 PM »
It will get there man, just keep taking your meds at or around the same time everyday and you should be good, some people take 1 month others take a couple, but from the looks of it, it has went down so give it time. I was at 41,000 range VL and I think it took me 2 months for UD, but you should be good with next set of labs being only 3 digits now.
April 2010- tested neg.
April 1 2011 -  CD4 346 VL 46856 22%
July 27 2011- Started Atripla
(Meds are good) needed more space to update been UD now for three years. Current down below
Jun 5 2014 - CD4 704 VL UD % 44.0

Offline DanMo

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Re: Upset over latest labs
« Reply #10 on: November 28, 2011, 04:12:29 PM »
Hey you guys, thanks for your insight into this issue. (I can't compete with 20+ years, now can I?)

I think warning bells started to ring in my head because my doctor made such a big fuss about it. He kept going on about the importance of adhering to the regime, even though I assured him that I hadn't missed a single dose and that I followed his instructions by taking it right before going to sleep. (I guess making a habit of missing doses is more common than I thought?)

If you guys haven't noticed by now: I'm a big ol' worry-wart! Coming here and expressing myself really does help calm me down because it gives me the perspective from people who are more experienced. Also, I like having a contingency plan in place, knowing as much as I can about something because to me, being ignorant is very scary. In my case, ignorance is not bliss, and I don't like crossing bridges when I get to them, rather I like knowing all I can before the path I embark on just to feel safe  ;)

I'm sure apart from worrying, I was just super disappointed since I was sure my VL would be below 20 - 50 copies. Even my doctor seemed disappointed!  ::)

Matt: You make an interesting comment, about considering starting a new combo if things don't go smoothly in my next results. What my doctor mentioned was adding another drug to the mix, is that what you mean?

- Dan
“I tried to drown my sorrows, but the bastards learned how to swim, and now I am overwhelmed by this decent and good feeling.” —Frida Kahlo

11 Feb 2011 - Preliminary positive
07 Mar 11 - Inconclusive WB
14 Mar 11 - Diagnosed positive
05 Apr 11 - 355 (21%) / VL: 186,054
27 Apr 11 - 390 (20%) / VL: 285,095
06 Jun 11 - 298 (19%) / VL:  78,380
01 Aug 11 - > STARTED ATRIPLA <
30 Aug 11 - 699 (31%) / VL: 1,938
03 Nov 11 -                / VL: 645
27 Dec 11 - 559 (35%) / VL: 1,189
11 Jan 12 -                 / VL: <20
09 Apr 12 - 686 (40%) / VL: UD
11 Jul 12 - 793 (37%) / VL: 25

Offline newt

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Re: Upset over latest labs
« Reply #11 on: November 28, 2011, 06:00:02 PM »
Quote
What my doctor mentioned was adding another drug to the mix, is that what you mean?

Simpler to try sommat (all or prob part) different.

Provided you have no pre-treatment resistance (your doc tested for this right?) a standard 1st line combo -- even if not Atripla -- will be sufficient. I would resist a 4th drug except in special (specific and proven resistance) cases .

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

Offline mikeyb39

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  • Posts: 922
Re: Upset over latest labs
« Reply #12 on: November 28, 2011, 11:43:28 PM »
I've been taking Atripla for 10 months and still havent made it to UD, actually mine went up 10 on last labs, doc didn't seem too worried about said we would look at it again in a few months possibly a lab issue or small blip, if not UD then would consider adding another drug or switching.  Least my CD4'S are going up i guess.
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 leatherman

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Re: Upset over latest labs
« Reply #13 on: November 29, 2011, 12:51:39 AM »
I was just super disappointed since I was sure my VL would be below 20 - 50 copies. Even my doctor seemed disappointed!
I agree with John. ;) I don't understand the reaction of your doctor at all.
(Or really why you should be concerned, when you should be really happy with your results  ;) )

Your counts have been improving dramatically in a short amount of time. in three months you've gone from >78 ("greater than" because that was a result from early june. who knows what your VL was 2 months later at the end of July?!?) to <2k, with a cd4 percentage change from 19% to 31% ,and a cd4 increase of 400! And that was just after a month of Atripla! Then in the following 2 months, your VL dropped again by more than two-thirds (1900 to 645).

For a doctor to be causing you to worry about it like this with numbers like that, much less to even be considering a med change/addition at this point, is simply unfounded and unwarranted. Nothing about your case is out of the ordinary; instead it seems like a pretty damned good response to 3 months of HAART. ;) I don't know what miracle your doctor was expecting; but it seems like you've already got that miracle. ;D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline DanMo

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  • Posts: 235
  • Finally undetectable! ;D
Re: Upset over latest labs
« Reply #14 on: November 29, 2011, 06:58:23 PM »
Matt: Yes, I did get tested for resistance and there wasn't any resistance.

leatherman and mikeyb39: I think the very reason I had such a dramatic reduction in VL was the reason my doctor was expecting an undetectable load. But, I do agree that I've made very good progress and hope that my next labs keeps showing a downward trend.

Thanks you guys! You're awesome!  ;D

- Dan
“I tried to drown my sorrows, but the bastards learned how to swim, and now I am overwhelmed by this decent and good feeling.” —Frida Kahlo

11 Feb 2011 - Preliminary positive
07 Mar 11 - Inconclusive WB
14 Mar 11 - Diagnosed positive
05 Apr 11 - 355 (21%) / VL: 186,054
27 Apr 11 - 390 (20%) / VL: 285,095
06 Jun 11 - 298 (19%) / VL:  78,380
01 Aug 11 - > STARTED ATRIPLA <
30 Aug 11 - 699 (31%) / VL: 1,938
03 Nov 11 -                / VL: 645
27 Dec 11 - 559 (35%) / VL: 1,189
11 Jan 12 -                 / VL: <20
09 Apr 12 - 686 (40%) / VL: UD
11 Jul 12 - 793 (37%) / VL: 25

Online Jeff G

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Re: Upset over latest labs
« Reply #15 on: November 29, 2011, 07:16:34 PM »
Matt: Yes, I did get tested for resistance and there wasn't any resistance.

leatherman and mikeyb39: I think the very reason I had such a dramatic reduction in VL was the reason my doctor was expecting an undetectable load. But, I do agree that I've made very good progress and hope that my next labs keeps showing a downward trend.

Thanks you guys! You're awesome!  ;D

- Dan

Hi DanMo . It took me years to be able to see my treatment for HIV as a long term goal to be healthy and even longer not to feel like I'm doomed from a single bad lab report , I think you will be able to do this one day also . A single bad or off lab report rarely means things are starting to fall apart for you when you are dealing with CD4 counts and viral loads . Its a good idea for you to reduce your stress level by not being surprised by blips or an off lab report by expecting them to pop up from time to time . 

Its great to have this forum so we don't have to internalize this stuff and be left alone thinking or freaking out about the ins and outs of living poz .   

Offline Since2005

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Re: Upset over latest labs
« Reply #16 on: December 01, 2011, 12:55:15 AM »
I am seeing this as you are heading to the right direction... May be not where you/your doc want it to be but good progress indeed to my eyes.. but I am not a doc ..so what do I know...but reading others comments, I bet you are feeling better already.. at least I hope you are by now :)
« Last Edit: December 01, 2011, 02:26:18 AM by Since2005 »

Offline ejwilliamson90

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Re: Upset over latest labs
« Reply #17 on: December 01, 2011, 08:36:36 PM »
Congratulations on yet another dramatic drop in viral load, Hey as long as its dropping (significantly, I might add) your virus is being slowed down and you're just a few tests away from UD. I was frustrated with my CD4 going from 89 to 125 to 183 then back down to 172, even as my viral load dropped on the last two tests from 90 to 72. You should be celebrating!!!! I know its still stressful because the world undetectable gives us such relief. Just try looking long term... I had a hard time doing that too good luck :)
04/14/11  HIV- + Diagnosis
05/15/11 Initial CD4/VL reading: 89/ 550,000
05/15/11 - Genotype Test revealed no mutations
06/01/11 -Started Atripla
07/01/11- CD4/VL 125/900
09/26/11- CD4/VL 183/90
10/20/11- CD4/VL  172/72
11/15/11- CD4/VL 185/82
12/20/11- CD4/VL 186/<20!!!!!!!!!!!!!! FINALLY UD!
02/10/12 -CD4/VL 175/70
02/14/12- New Regimen: Norvir, Prezista, Isentress, Truvada
03/05/12 - CD4/VL 203/30 :
04/06/2012: cd4 228 vl <20
05/26/2012 cd4/vl 253/80
07/25/2012 cd4/vl 249/<20
09/10/2012 cd4/ vl 294/<20
Medications:
Prevacid 30, Ativan 2mg 4x/day,Testim 50mg daily, Certavite Multivitamin with Antioxidants, Quinapril 40mg, Fish Oil 3/day, 1000mg Garlic, 2-4 G Carafate, Paxil 20mg, Dapsone 100mg, Norvir, Prezista, Truvada, Isentress.
PRN: Marinol, Baclofen, Ultrum, Patanase, Lidoderm

 


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