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Author Topic: My latest labs have me confused  (Read 4300 times)

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Offline ChaplinGuy

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My latest labs have me confused
« on: December 19, 2006, 02:12:10 pm »

Okay, I am starting to get confused given my latest round of lab work. Poz about 8 months, and my labs have looked like this:

June 06 (first set): VL 32,000, CD4 480, % 20
August 06: VL 7,000, CD4 460, % 22
December 06: VL 50,000, CD4 580, % 20

What is happening? Is this odd that they seem to be jumping all over the map on VLs but staying put (if not improving) on CD4 count? I'm trying to wrestle with this, as I'm still in the early stages of diagnosis and feel great.

Comments, guidance and words of wisdom appreciated.

Offline Cliff

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Re: My latest labs have me confused
« Reply #1 on: December 19, 2006, 02:15:22 pm »
I don't know if you were recently infected (as in knowing conclusively that you were negative and then sero-converted) as opposed to simply just found out about an old infection, but if you were recently infected your numbers will tend to jump around a lot.  Actually even those who relatively stable will see some wild swings in the viral load and absolute tcell count.  Your numbers don't seem to be too much out of the ordinary, so I wouldn't stress over it.

Cliff

Offline Cliff

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Re: My latest labs have me confused
« Reply #2 on: December 19, 2006, 02:16:48 pm »
BTW, it can take 6 months to a year for new infections to stabilize.

Offline thunter34

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Re: My latest labs have me confused
« Reply #3 on: December 19, 2006, 02:18:13 pm »
I am assuming from the overall goodness of your numbers that you are not on meds as of yet, right?  At least, I am expecting to hear a 'no'.  If so, the numbers are fine & the fluctuation is no big whoop.
AIDS isn't for sissies.

Offline ChaplinGuy

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Re: My latest labs have me confused
« Reply #4 on: December 19, 2006, 02:22:15 pm »

So should I push back on my doc's recommendation that I temporarily start on meds and just do another round of labs first? If my results are just two weeks old, will it make much difference? I feel like it's way early to be talking meds just a year into this, no?

Offline poet

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Re: My latest labs have me confused
« Reply #5 on: December 19, 2006, 02:24:58 pm »
I would ask the same question as Tim: 'are you on meds yet?'  IF not, then the up and down  is what goes on inside.  Your cd4's respond to infections.  The numbers increase for the fight.  If the cd8's get activated, they can duke it out with the cd4's.  The viral load the second time around could be a fluke in counting or not.  Even if someone is on meds., I caution them to try to look over a long period of time for a pattern rather than fixing on short term intervals, so, for them, a viral load which becomes undetectable (great news) and an overall pattern which can be 'graphed' if you will of cd4's.  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 ChaplinGuy

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Re: My latest labs have me confused
« Reply #6 on: December 19, 2006, 02:27:43 pm »
Sorry all, in my mental haze I'm not being very clear on my backstory. Let me fill in some holes I've left out:

Not on meds. So perhaps I am just settling in?
« Last Edit: December 19, 2006, 02:43:08 pm by ChaplinGuy »

Offline poet

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Re: My latest labs have me confused
« Reply #7 on: December 19, 2006, 02:27:53 pm »
Having posted right as you were doing so, your cd4's for many of us would say, yes, your numbers are high enough that you could wait if you wanted to do so.  Talk to your doctor.  See what he/she thinks.  Go home without making a decision and weigh the pros and cons, including posting here for our feedback.  I believe very strongly that we will know usually when we are 'ready' for meds and until we are 'ready,' it's not time.  You or anyone else don't want to wade in half-way, sort of taking them, sort of forgetting them, etc.  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 Cliff

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Re: My latest labs have me confused
« Reply #8 on: December 19, 2006, 02:30:21 pm »
So should I push back on my doc's recommendation that I temporarily start on meds and just do another round of labs first? If my results are just two weeks old, will it make much difference? I feel like it's way early to be talking meds just a year into this, no?
Your numbers are too high (tcell) for starting meds.  The US guidance says you begin to consider meds when your tcells are in the 200-350 range or your viral load is 100,000.  You don't seem to meet either threshold.  Your doc seems pretty aggressive (not necessarily a bad thing, but he should explain to you why he doesn't follow-up the US CDC HIV treatment guidelines).

Offline MSPspud

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Re: My latest labs have me confused
« Reply #9 on: December 19, 2006, 03:52:28 pm »
Honestly, I thought the threshold was somewhere around 350 CD4 or a viral load of over 50K (not 100K).  I would probably wait for another set of labs before making a final decision since you're bordering on the viral part, but I would also prepare for meds in the meantime by making sure you can adhere and can set aside a time in the spring to adjust (if worse comes to worse).  You're a busy guy and meds are not a terrible thing.  They will provide your body a chance to rest and heal while you continue to burn your candle on both ends. 

Regardless, you still have the luxury to wait a little and see where everything settles.  I don't think your doctor was all that off in mentioning meds, but she should also make it clear that it's still your decision and that there are many differing theories out there on when to start.  If you take your labs in two weeks, you'd be amazed at how the numbers could change.  They differ from hour to hour, day to day, lab to lab - so give it one more try and enjoy your Xmas med free.  I'll see you on Thursday, buddy  :)   

Offline HIVworker

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Re: My latest labs have me confused
« Reply #10 on: December 19, 2006, 04:08:46 pm »
Don't temporarily go on meds. You either go on them or not, I wouldn't take them for a few months and then not take them. If you do that, the viral load will go down and come back and you would be back to square one...and you run the risk of resistance.

Sorry if you didn't plan on that, but I that's what I read into one of your comments.

R
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline Cliff

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Re: My latest labs have me confused
« Reply #11 on: December 19, 2006, 04:10:14 pm »
I forgot to include a link to the guidelines.

http://aidsinfo.nih.gov/ContentFiles/AdultandAdolescentGL.pdf  

The CDC says, see page 8,...

- Treatment should be offerred for anyone with an AIDS defining illness, regardless of tcell counts
- Treatment recommended for people, even with no symptoms, with a tcell count below 200
- Treatment should be offerred (but not required) for people, even with no symptoms, with a tcell count between 201 and 350
- No recommendation on people with tcell counts greater than 250 AND a viral load greater than 100,000....guidelines says most doctors choose to defer treatment
- Treatment should be deferred for those with tcell counts greater than 350 and a viral load less than 100,000 (You seem firmly in this category with tcells in the 400-500 range and a viral load, at its highest, of 50,000)

Your choice though (at least it should be).  The guidelines also discusses the pro and cons of starting treatment early (i.e., reduction in viral load and the benefits that gives your immune system offset by the risk of getting resistance unnecessairly/burning through options too early and dealing with side effects).  That bit starts on page 10.
« Last Edit: December 19, 2006, 04:11:57 pm by Cliff »

Offline Christine

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Re: My latest labs have me confused
« Reply #12 on: December 19, 2006, 04:39:11 pm »
Hi Chaplin,
I agree with what everyone else posted. I know it is hard to not be concerned or anxious when you see your numbers move around, but it really is normal.

If I were in your situation, I would wait for the next set of lab results, then take the guidelines that Cliff sent, and info on first line treatments to the doctor. Go over it all, then decide after that appointment what your next course of action will be. That is just my opinion, not medical advice.

I do think it is important to be mentally prepared to start meds, and important to understand what you will have to do to be compliant in taking them, and be able to deal with any side effects that might occur.
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline Alain

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Re: My latest labs have me confused
« Reply #13 on: December 19, 2006, 04:51:21 pm »
.....on my doc's recommendation that I temporarily start on meds.....

Chaplin,

I do not know much and I AM NOT AN EXPERT... but I would seriously get a second opinion or to put it simply changed doctor.

I just can't believe that a doctor (HIV specialist) would recommend such a thing especially with the issue of resistance, being one of the most important one to date, after compliance and also side effects.

You either start taking meds or you wait for later. Your decision.

Best of luck.

Offline dixieman

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Re: My latest labs have me confused
« Reply #14 on: December 19, 2006, 05:54:16 pm »
First, how do you feel? I waited to start my meds... and when I did I was a guinea pig for research in Bham, AL... pros and cons... if your doing well without meds I would wait but, if your viral load spirals upward... its time... my viral load is non-detectable cd4 count ranges from 1100 to 1250 and I've had this s""t for 15 years... read... plenty of information on the web.. a good source is the body... google under hiv... and if you have doubts about your doctor... fire him and look for another... I've booted many off from my case... best of luck!

Offline texasguy

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Re: My latest labs have me confused
« Reply #15 on: December 19, 2006, 09:41:44 pm »
It's been twelve months for me since seroconversion.  You can see my numbers below.  My doc has a large HIV practice for many years, so lots of experience.  I was concerned with my recent drop in numbers, but he still thinks my numbers still haven't quite settled down to a baseline.  As others have stated, the fluctuations in CD4 can be large, especially with VL in my range of 50,000.  We watch the CD4 percentage, and as you see that is still bounching around for me as well.  I feel quite well, have not even had a cold this year (and I work in a hospital).  And I am most grateful for that.  I have told my doc that I am ready to start meds at any time and be serious about it.  But he says not yet.  Next appointment in February '07.   
8/12/2008    102        402      26.8
                    VL         CD4     CD4%
7/11/2008   Started Atripla and Lisinopril for high blood pressure
6/8     654000(?) 347     20.4
5/08   42100       287      20.5
11/07 52930       438     27.3
5/07   48800       356     22.2
2/07   89000       316     23.2
7/06   51700       459     25.3
2/06   346000     386     20.3
           VL          CD4     CD4%
Poz Antibody Test January 2006
Seroconversion December 2005
Exposure November 2005

Offline Eldon

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Re: My latest labs have me confused
« Reply #16 on: December 19, 2006, 09:49:16 pm »
Hi Chaplinguy...

It is GOOD to hear from you. Cliff is right on point with this situation. Your system is still stabilizing itself. Until it does you will see your number fluctuate up and down. Also, as HIVworker had mentioned, there is no temporary being on meds, either you start them or not. With your numbers as Cliff has mentioned, there is no need for you to start meds. Take care of YOU!


"Don't Give Up, Don't Give In... Cause it is ALL within you to WIN!"

Offline aztecan

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Re: My latest labs have me confused
« Reply #17 on: December 19, 2006, 10:12:20 pm »
So should I push back on my doc's recommendation that I temporarily start on meds and just do another round of labs first? If my results are just two weeks old, will it make much difference? I feel like it's way early to be talking meds just a year into this, no?

I have never heard of anyone "temporarily" starting treatment. I have heard there are some docs who advise on hitting right away after initial conversion, but I am not sure of the protocol for such treatment, etc.

Testing two weeks after the last test probably won't show too much. One thing to remember is you could test twice the same day and get different results.
The thing to keep an eye on is a pattern. I went on meds after my CD4s started dropping consistently, as shown by several sets of labs, and my viral load started shooting upward.

Were it me, I would have a serious heart-to-heart with your doctor and ask him to explain why he wants to start meds, especially on a temporary basis. Your numbers are still OK. You have enough wiggle room to wait for another set of labs if that is what you decide to do.

Here is a link to the lessons section discussing when people should consider meds. It may be helpful and provide you some food for thought.

http://www.aidsmeds.com/lessons/WhenToStart1.htm

I tend to agree with Cliff, et al, regarding the possibility your body is still adjusting to the virus.

Let us know what you decide and what your doc says.

HUGS,

Mark
« Last Edit: December 19, 2006, 10:25:07 pm by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline ChaplinGuy

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Re: My latest labs have me confused
« Reply #18 on: December 20, 2006, 06:55:04 am »

Thanks guys! You all rock. I am going to sleep on this until my next scheduled appointment in February - and just focus on enjoying the holidays and my vacation in the beautiful Oregon wilderness.

Happy Holidays to everyone!

Zach

 


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