Scary labs one year in!!!

[JeffJA1970]

New to the board here....GREAT resource, wish I had found it earlier!!! 


I'm pretty sure I know how this will be answered, but I guess I just want to hear/see it for myself.  After all, this is ME we're talking about!   

Diagnosed a year ago almost exactly (day before Thanksgiving...yay).  Numbers were pretty bed....CD4 of 46, CD4% of 9%, VL 400K+.  Struggled through a month of waiting for resistance tests, during which time I developed a scary case of hemolytic anemia from Bactrim toxicity.  Finally started Atripla on 12/21.

Since then, things have steadily, if not spectacularly, improved.  My August numbers were CD4 of 284, CD4% of 14%, and VL <48.  I (and my partner, who's negative) were really happy with the results, and were looking forward to celebrating the end of our first full year of living with this by getting some great numbers -- we even hoped for 300/15%.

Sadly, that wasn't meant to be.  Just got my labs back from Monday's bloodwork.  CD4 is 214, CD4% is 12, and VL (thankfully) is still <48.  I cried all the way home.     Not exactly what we were hoping for. 

I see my infectious disease doc on the 17th, and -- since he's not the excitable type, to put it mildly -- I'm pretty sure he's going to tell me not to worry about it, that as long as I'm undetectable, all is well.  CD4 counts are variable, after all.  And I've done enough reading, today and in the past, to know he might well be right about that, and I shouldn't panic (like I have already).

What most concerns me is the drop in my CD4%, which is supposed to be the stable number, the "as long as this doesn't change, all is well" failsafe.  14% to 12% is a pretty big drop, relatively speaking, and I'm just wondering if anyone else here has experienced a 25% drop in CD4 count, with an accompanying drop in CD4%.  I try not to worry, to take one day at a time, and I think that -- between my own laid back personality and the support of my partner --  I've done pretty well.  Now I'm figuring that it's been painless before because I've been making progress.  Now that my progress seems to have stopped, all my fears are flooding back.   

Thnks for reading this, folks....and thanks too, if you decide to offer any input/advice.  This is all still new to us, so the voice(s) of experience would be a real comfort!!!

[Miss Philicia]

The easiest way for me to put this, is that if next time you get tested in three months your lab numbers are 195, 15% and <48 how will you look back at this moment and what will you think of your reaction?  Short story is that you can't say much until you get the next set of labs.  There's no guarantee that patients won't have momentary set backs that, in the long view, are just little aberrations and not indicative of a long term trend.

[surf18]

I know what your going through. I had labs that decreased last month. (I think my thread is below yours)
I freaked. Made them retest me in two months.I was not waiting a month.
My partner who is neg was like I told you not to freak (2 week after test results were better)
I told him that is easier said then done. Sometimes as loving and supportive our people are they don't understand what were going tru mentally.

[Ann]

Hi Jeff, welcome to the forums. I'm glad you found us.

You're right on the money when you predict your doctor will tell you that what is important is that your VL is undetectable. And yes, CD4 counts will fluctuate and so will the percent. The absolute CD4 count can vary as much as 100 in either direction in the course of one single day, so don't sweat it. Percentages, although generally a more stable number, can also fluctuate. Mine have bounced around for years and I'm doing well in general. You'll do well too.

Again, when one is on treatment, the most important thing is that your VL remains undetectable. Don't let yourself stress out over your CD4 numbers. Stress is one of our biggest enemies in terms of overall health, so don't add unnecessary stress to your life. And stressing about the small fluctuations you've experienced is totally unnecessary.

Hang in there. You'll get used to this in time and you'll wonder what you got so excited about. Trust me on that.

Ann

[aztecan]

Hi Jeff,

Like the others said, don't let one set of numbers get you down. I know that is harder to say than to do, because we all tend to fixate on them.

That aside, remember you started at a very low CD4 nadir. I wouldn't be surprised if it took a bit of time to get back up to robust levels.

Some people take years to do what you have accomplished in less than a year, so keep in mind the progress you have already made.

That undetectable viral load is the important thing.

Oh, and welcome aboard. I am glad you found us as well.

Keep your chin up.

HUGS,

Mark

[Assurbanipal]

Hi Jeff

Welcome to the forums.  You've made great progress towards health in the last year! Getting up over 200 is a real milestone in terms of the protection you have against OI's. 

As far as the numbers go, they are just based on a small sample of your blood (good thing that too!) and so they are subject to a lot of random variation and statistical error.  The US treatment guidelines suggest that a change in a single lab report is not significant unless it is more than:

3-fold for viral load (multiply or divide by 3)
30% up or down for CD4 count
plus or minus 3% for CD4 percentage.

You are within those thresholds, so it might well be that the change in your numbers from last time doesn't mean anything and is all just random statistical noise.  (But the change from when you were first diagnosed is clearly significant, dramatic and all in the right direction.)

If you are numerically inclined, I'd suggest you graph your numbers   I find that it can be a lot easier to see what is significant or not by looking at a graph rather than by fixating on the specific numbers -- you can use excel or there is an app on the website -- although for many people that is just too geeky.

But, be of good cheer, things are looking pretty good from a distance.

A

[eric48]

Hi, and welcome to this nice group of people,

Your CD4% is on the recovery but still in the lower range.

The lower the % the higher the uncertainty on CD4 count (because CD4 count is calculated as the total lymphocytes multiplied by the CD4%)
CD4 % is known with an uncertainty that may depend on labs. I suspect mine is +/- 4 % ; Yours might be 2 %;

At you earlier Blood test, your total lymphocyte was measure to 2028 and a quick assay was made to determine the percentage of them that are CD4. If the result was 13,05, the lab test shows 14%
if it had been 12.95, it would have shown 12 %. This is because some labs are using commercial (cheap) machines that read by steps of 2...

This time, your total lymphocyte was measured at 1783 (you can check on you lab sheet, you will find this number, not that I can read it from where I am , though...)

this time instead of reporting 14% it reported 12, it could very well have reported 14, as explained above and your CD4 Count would have come as :

1783 x 12 /100 = 250

so your CD4 count and % are , so to speak,  unchanged...

Good news ? Bad news ?

Actually , most likely good...

Your total lymphocytes have gone down from 2028 to 1783. 'activation' is slowing down.

Most likely because your CD8 count has gone down (get a look at it, most lab sheets have that)

immune- reconstitution is of 2 things:
- 1 increase of CD4 (the guardians) (or mouse, if you prefer)
- 2 decrease of CD8 (the killers) (the cats)

the excess of CD8s (cats) is not needed by your body anymore since the virus is now under control. But cats have a longer life expectancy than mouses

life time of CD8s is a bit longer than that of CD4, so it takes a while for your systems to purge all these bad guys

Once they have been fully purged (and I do not see any reason why not since you are remaining UD), the mouse will start proliferating again

Recovery of CD4 may take longer in some people (some people have more CD8s to purge than others...), but on the long term, a slow recovery does not mean less recovery. Be patient

Cheers!

Eric

[surf18]

So we want less cd8? I never knew what thier deal was.

[eric48]

Upon infection the number of CD4 (mouse and rats) decrease because the number of cats (CD8s) increase

(rats being 'bad' mice - read: infected CD4)

When you start taking the meds, God establishes a new rule : rats may not reproduce themselves

cats find less food, their population diminishes. they still eat some mice from time to time, but still...

After a while rats are almost extinct specie , cat population has significantly decreased and mice (healthy CD4s) take the empty environmental niche: the proliferate again.

So the aim is not to reduce the number of cats ; the aim is to increase the number of mice vs that of rats.
the decreasing number of cats is merely a consequence or sign.

In a healthy individual, there is an average 2 mice for one cat (and no rats) (so more mice than cats)

in an HIVer under potent , successfull meds, there is (almost) no rats, but still a few more cats than mice.

Which is not a return to normal, but still the number of mice has increased to a sustainable level, which is what we want (mice are no more an endangered species)

Metaphorically, of course ;-)  Eric

[JeffJA1970]

I want to thank you all for all the kind words/reassurance.  It's great to hear that my "drop" this time around likely isn't the catastrophe I thought it was at first glance.  I DO reserve the right to be a tiny bit sad/disappointed/frustrated to have broken my "going up" streak -- and right at my one year mark, besides -- but I'm relieved overall to know that I haven't slipped as much as I thought.     Thanks again!!!

Thanks for the in-depth explanation, Eric.  I did check my results, though, and don't see some of the numbers you mentioned.  I do see a "lymphs (absolute)" number, but that's just 1.7 X10E3/UL.  Nothing like the numbers in the thousands.  There's also an entry for "lymphocytes", but that number is 23.6 -- again not in the thousands.  No mention of CD8's, either that I can see...so not sure how many "cats" I've got running around in there.     Should this be something I should be asking?

Again, folks, thanks SO much for all the reassurance, and helping keep our weekend from being ruined.  I definitely plan on keeping in touch!!!

[eric48]

Hi,

I am quite sorry for my pedantic calculations. You will find many comforting friends on this board who will sympathize and cheer you up based on their experience.

I merely wanted to back up the general feeling that you should not worry too much with some more hardcore 'science'

Now, you may not be familiar with it but, 1.7 X10E3/UL means 1.7 times 1000 per microliter. I was therefore right on:

1.7 x 1000 = 1700 !

10E3 means : 1 followed by 3 zeros, hence 1000

I reported my calculation in the classic numeric notation, whereas you lab is using the scientific notation.

The immune recovery involve several processes that do not have the same dynamics (such as life expectancy of mice and cats)

Your initial expections (300 - 15%) where quit reasonable in a linear, progressive perspective. It would be the case if the immune recovery was a simple chemical reaction

Since it is a more complex process, your expectations are simply a bit delayed.

My Lab reports the CD8, they are of some clinical significance only for some situation that are difficult to define.

Yours was just so simple to define: you were in great danger. You way want to ask the lab if they have the CD8 percentage in their files

that number ( 23.6 ) is most likely this: lymphocyte are leukocyte. the lab first determine the total number of leukocytes (white blood cell) and then the asses the percentage of which that are lymphocyte.

23.6 is most likely the percentage of lymphocytes among your leukocytes.

Talking about mice and cats, it may still need some time for the cats (CD8) population to decrease.

Once this is done CD4 (mice) will start proliferating again. Good news ...

On the lowdown , though, your lowest ever number was 22: that is very low.

mice (your little soldiers) come in several subtypes (artillery, cavalry, navy, air force, ....). Some of the sub types may have been destroyed so badly that, eventhough your army will rebuilt itself, it may not recover the
original balance it had... The numbers will be back, may be not the necessary diversity.

Therefore (in my humble opinion), as your immune system recovers with many troops and cavalry, it may still be not strong enough against an attack that would have required air force (now missing or depleted)

This is the reason why your doctor will most likely lesson you on remaining on the watch out and moving towards the healthiest possible lifestyle:

balanced food, regular low intensity exercise, no barebacking, no further bugs (if you see what I mean...)

no smoking. and since you are living in a partnership, these advices will extend to him/her as well...

And you will live long enough to tell your amazing life to your grand children ( LOL )

Take care

Eric