HIV Is So Confusing

[tednlou2]

I got my latest numbers today.  After reading about others starting meds, I had resolved to discuss starting meds if my vl was above 30,000 or the % had dropped.  As you can see below, last time my CD4 was 811 at 21% with a vl of 27,700--the highest its been.  Since those last numbers, I had that extreme fatigue in January after a trip.  I really felt my numbers were going to be bad.

Latest Numbers:  

CD4:  703 at 23% with vl 12,600

So I lost over 100 CD4s.  I'm not freaking out.  CD4's bounce around.  My % went up just slightly, but the viral load really went down.  It seems when my body gets my viral load down, my CD4 also goes down--not counting the first lab after being in the hosp.  I always thought CD4 should go up with a lower viral load.  However, I was just talking about how I read our bodies get really overworked trying to maintain a low to mod low vl.  So, maybe getting the vl down used up some CD4s??  I know I can't look at a few labs and determine my CD4 drops every time my body lowers vl.  It could be a coincidence.  

Anyway, I just thought I'd share this for whatever it is worth.  I'm not complaining--believe me.  Even with the CD4 drop, I'm still happy the % didn't drop more and the vl went down.  

One last thing--- My AST had been elevated the last couple labs.  It was 75 one time and 69 another--think those were the numbers.  It had been normal on all other labs and this only seemed to happen after starting the beta-blocker, Atenolol.  I didn't take Atenolol in the 24 hrs prior to doing the bloodwork this time.  My AST was the best its been.  So, I'll have to see if it goes back up next time.  That med has helped control bp and anxiety/panic attacks.  Maybe the elevated AST and Atenolol was just a coincidence, too.  

  

[skeebo1969]

Anyway, I just thought I'd share this for whatever it is worth.  I'm not complaining--believe me.  Even with the CD4 drop, I'm still happy the % didn't drop more and the vl went down.  

  Ted,

    You're numbers are as important to you as everyone else's is to them and since you are not on meds it is very important you keep track of everything much like you're doing, so there is no need to validate your concerns because we do not think you are complaining at all.

   I think your numbers look good.  I can remember before I started meds having rough days at work.  I use to always think that next blood draw was going to be frighteningly low and would be surprised when the results would be satisfactory.

    

[Etay1207]

I had the same thing happen to me. My VL dropped in half from last summer til now. My tcells also dropped. Explain it? I can't. My VL is still high, but dropping from 667,000 to 322,000 is a big difference. 

[Assurbanipal]

I had the same thing happen to me. My VL dropped in half from last summer til now. My tcells also dropped. Explain it? I can't. My VL is still high, but dropping from 667,000 to 322,000 is a big difference. 

Actually dropping from 667K to 322K is NOT a significant difference.  It could just be measurement error.  To be a significant difference you need a 3 fold change in viral load.

Same applies for you Ted -- could just be random variation. 

[tednlou2]

Thanks for the info so far.  I posted not to just have something to post about, but to maybe get info.  And, to say how I was gearing up to talk about starting meds and then the labs left me wondering again.  It was interesting to hear the viral load drop could just be a measurement error.  So the 12,000 number may not be a true number?  It very well could still be in the 20k's? 

If this is true, how do we know a 20k number isn't actually higher?  If it stays in that area over time, we know it isn't higher than what the lab is saying?  What about CD4s?  Do we know whether a certain number is a real snap-shot of what is was when blood was given?  Could it actually be higher or lower than the lab result is indicating? 

I'm still learning how these tests are done and I'm pretty ignorant still.  I was reading something about how either the CD4 or vl is often calculated by using a couple lab values and not actually counted like one would think.  Does anyone have more info on this?

[Etay1207]

Assurbanipal, what do you mean by 3 fold? Would my VL have to drop to the 200k range for it to be significant? I don't completly understand what a log drop is.

Tednlou, none of your blood counts are actual numbers. They are just a snapshot of THAT particular moment. It's like taking a picture as opposed to a video. Tcells counts and VL counts are constantly changing. Thats why doctors look for trends.

[Miss Philicia]

tednlouwithnumbers: did you ever once ponder that, oh perhaps that 171 cd4 count in the hospital was a total fluke?  A fuck up of huge proportions and a lab error, and you've been giving yourself anxiety attacks ever since then for absolutely no reason at all (well, except you've had anxiety issues predating your HIV diagnosis, but they're definitely overboard now).

You're a bundle of nerves with this "should I or shouldn't I?" go on meds, even with excellent numbers.  Seriously, if it would calm you down then GO ON MEDS.  But at any rate as explained with your viral load/log change you're really at the same place you were last time you had labs done -- your basically stable even if to the uninitiated it doesn't look that way.

If it was me I'd spend a year seeing how my numbers went, and how stable they were.  I'm not big on this OMG GO ON MEDS ASAP treatment direction, though I'm definitely not one that would wait either if they were in the 400-500 range.  I just don't see the reason to push your body on to meds, some of which things may be discovered later that we don't know about at the moment.  People always seem to forget that angle.  Guess I'm a bit conservative in that respect after 17 years, but you do what ever will keep your mental state calm... it needs it.

Frankly I don't think it will calm you down that much, but alas that's another thread.

[edfu]

What about CD4s?  Do we know whether a certain number is a real snap-shot of what is was when blood was given?  Could it actually be higher or lower than the lab result is indicating? 

I'm still learning how these tests are done and I'm pretty ignorant still.  I was reading something about how either the CD4 or vl is often calculated by using a couple lab values and not actually counted like one would think.  Does anyone have more info on this?

CD4 absolute count is determined via this formula:

WBC (white blood-cell count) X lymphocyte % X CD4% = absolute CD4 count

[tednlou2]

tednlouwithnumbers: did you ever once ponder that, oh perhaps that 171 cd4 count in the hospital was a total fluke?  A fuck up of huge proportions and a lab error, and you've been giving yourself anxiety attacks ever since then for absolutely no reason at all (well, except you've had anxiety issues predating your HIV diagnosis, but they're definitely overboard now).

You're a bundle of nerves with this "should I or shouldn't I?" go on meds, even with excellent numbers.  Seriously, if it would calm you down then GO ON MEDS.  But at any rate as explained with your viral load/log change you're really at the same place you were last time you had labs done -- your basically stable even if to the uninitiated it doesn't look that way.

If it was me I'd spend a year seeing how my numbers went, and how stable they were.  I'm not big on this OMG GO ON MEDS ASAP treatment direction, though I'm definitely not one that would wait either if they were in the 400-500 range.  I just don't see the reason to push your body on to meds, some of which things may be discovered later that we don't know about at the moment.  People always seem to forget that angle.  Guess I'm a bit conservative in that respect after 17 years, but you do what ever will keep your mental state calm... it needs it.

Frankly I don't think it will calm you down that much, but alas that's another thread.

Thanks for your take/advice on this.  It is true I've had a lot of anxiety since diagnosis.  I think this definitely comes from being sick when diagnosed and thinking how it could happen again.  I think if I hadn't gotten sick, I would deal with the diagnosis better.  My anxiety does predate all this.  This is something I'm talking with my counselor about now.  I grew up with my fight or flight response always turned way up with an alcoholic father and violence, being in a restaurant at age 6 when a man came in and killed his wife and killed himself, and other things.  We all have things to get through.

Having said that, I believe I've come a long way on this.  I really didn't mean for the tone of my thread to sound panicked.  I was very happy about these numbers.  Anyway, I do appreciate your input.  I did learn something--my numbers are basically the same.  My doc was acting like that drop in vl was a big deal.  From what you guys are saying, it really isn't a change at all.  That is info I can use.  That is more of what I was looking for--info like this.

CD4 absolute count is determined via this formula:

WBC (white blood-cell count) X lymphocyte % X CD4% = absolute CD4 count

Thanks for this info.  I guess this is what I was talking about but couldn't remember if it was how CD4 or vl was counted.

[edfu]

Viral load is a direct lab measurement and is not computed via a formula with other lab measurements.

[Okealyshire]

I grew up with my fight or flight response always turned way up with an alcoholic father and violence, being in a restaurant at age 6 when a man came in and killed his wife and killed himself, and other things.  We all have things to get through.

Holy shit... I've had a few close friends with alcoholic fathers (why is it mostly fathers?) and I remember how messed up my friends were at times. I can't imagine witnessing what you saw at the restaurant at the tender age of six. How did you cope?

[tednlou2]

Holy shit... I've had a few close friends with alcoholic fathers (why is it mostly fathers?) and I remember how messed up my friends were at times. I can't imagine witnessing what you saw at the restaurant at the tender age of six. How did you cope?

After my brother and I moved out at 18 when we could, my father finally got sober.  I have a decent relationship with him, but I still have issues over what he did.  I'm glad he is sober now--just wish he would have done it sooner.

About the restaurant:  This happened around 1983.  I guess back then therapy wasn't something parents thought a child may need after that.  It was a very scary event.  We saw the man come in and shoot his wife who worked there.  Instead of trying to get out of the restaurant, everyone just went under the tables.  I remember my brother, cousins, and I under the table scared to death.  I never really thought I was traumatized by this.  I think I had a couple bad nightmares, but it didn't seem to affect me that bad-- at least I didn't think.  I thought about it from time to time.  It is obviously something very ingrained in my mind, because I can still remember everything--how the restaurant looked, the sound of the gun, people screaming, etc.  Still, I never really thought it was something that was troubling me.

While talking to the therapist, he asked about any childhood traumas.  He already knew about the trauma of getting really sick and told I was poz.  I told him about my father, the fights he had with my mother, and how my brother and I were removed from the home and were in a children's home.  We were only there a few days until my aunt came to get us.  It was still very traumatic.  I've actually tried to find out the name of the police officer who took us to the children's home.  I've been wanting to thank him.  He was so nice and took us to get ice-cream before dropping us off.  I will never forget that.  I know many cops can be real asses, but he wasn't.  This was also in the early 80's. 

God, this is getting depressing.  I realize there are many others who've been through worse.  Anyway, the therapist believes I have a degree of PTSD.  He said many just think that happens to soldiers, but it can happen to anyone.  He said some can get it from just being teased in school.  I don't want people to think I'm a depressed mess and crazy..lol.  I live a normal life, but I'm more prone to anxiety I guess.  I know HIV causes depression/anxiety on its own.  I do believe a person's fight or flight response can be so revved up from different things in their lives and this causes anxiety.  Others have it even with a great childhood.

I suppose this is why some are able to deal with life's obstacles and others don't, or not as well.  Again, I don't want to give the impression I'm shut up in my home and nuts.  I just have some mild depression and some anxiety with panic attacks--which have actually gotten better.  I was just saying on here to someone how those panic attacks started about 2 years before diagnosis.  So, I do think the virus itself has an effect.

Sorry for the long response.   

[Okealyshire]

Sorry for the long response.   

No need to apologize. I appreciate you taking the time to answer. I believe most people are decent and kind and loving and just looking for someone to listen to their stories. I like to listen.

I remember my brother, cousins, and I under the table scared to death.  I never really thought I was traumatized by this.  I think I had a couple bad nightmares, but it didn't seem to affect me that bad-- at least I didn't think.  I thought about it from time to time.  It is obviously something very ingrained in my mind, because I can still remember everything--how the restaurant looked, the sound of the gun, people screaming, etc.  Still, I never really thought it was something that was troubling me.

Sounds like you have a stronger constitution than I. Scenes involving guns on TV or in movies nauseate me...witnessing the real thing is beyond my imagination.

God, this is getting depressing. . . . I don't want people to think I'm a depressed mess and crazy . . . I don't want to give the impression I'm shut up in my home and nuts.

We don't think this about you. Don't worry. Thanks for sharing your story.

[edfu]

Anyway, the therapist believes I have a degree of PTSD.  He said many just think that happens to soldiers, but it can happen to anyone.   

He's quite correct, I believe.  I've been diagnosed with PTSD (post-traumatic stress-disorder) as well, and mine is from my experiences in the early 1980s, when 90% of my friends and social network in NYC became ill and died.  Some I even diagnosed myself--like my best friend at the time, whose doctor told him his pneumonia was "just" pneumonia and the purple lesions were from his "diet," and another good friend, who lived in the neighborhood and insisted on coming over at 1 A.M. to show me his leg lesions and to ask what I thought.   

Do not be ashamed, and pay no heed to some here who would denigrate you.  They might call you a "verklempt homosexual," as I have been called here, but their experiences are simply not the same, or they are not as susceptible to the same traumas as you have experienced.

[Assurbanipal]

Assurbanipal, what do you mean by 3 fold? Would my VL have to drop to the 200k range for it to be significant? I don't completly understand what a log drop is.

Tednlou, none of your blood counts are actual numbers. They are just a snapshot of THAT particular moment. It's like taking a picture as opposed to a video. Tcells counts and VL counts are constantly changing. Thats why doctors look for trends.

Etay

3 fold either direction.  So a 3 fold up or 3 fold down change.

But I also wanted to suggest a different way of looking at something you said to Ted.  The way to think about this is not as a SNAPSHOT of the total picture at that moment.  Instead you need to think of it as a SAMPLE of the total.  It's a quantum world.

All any one sample tells you is that you have a 95% chance that your "true" total viral load is between one third and 3 times the number that was derived from the sample.

Ted

They are just taking a small sample of your blood (thank goodness, eh?)  And from that sample they make an accurate measure -- the problem is trying to extrapolate from that sample to your whole body.

A single sample has a very wide confidence interval.  If you take multiple samples the confidence interval narrows.  That's why looking at trends is so useful, you are automatically looking at multiple samples.  You can't call two measurements a trend, but it looks like your viral load is in the low 10 thousands. 

Your first measurement said you were probably carrying n the range of 9K to 83K.  The second measurement gives a range of 4K to 38K.  When you think about each measurement as a range it can give you some added perspective about how little difference there was in the viral load measurements you saw. 

[Tim Horn]

Assurbanipal, what do you mean by 3 fold? Would my VL have to drop to the 200k range for it to be significant? I don't completly understand what a log drop is.

Etay:

A log drop (or log increase) is basically a factor of ten. For simplicity's sake, let's say someone has a "baseline" viral load of 500,000 copies/mL. A 1-log drop would be a reduction to 50,000 copies. A 2-log drop would be a reduction to 5,000 copies. A 3-log drop would be a reduction to 500 copies... and so on.

Actually dropping from 667K to 322K is NOT a significant difference.  It could just be measurement error.  To be a significant difference you need a 3 fold change in viral load.  

Technically speaking, anything short of a 0.5 log change can be chalked up as a measurement error or as an "statistically insignificant" fluctuation; a 3-log reduction is what researchers hope to see in combination therapy clinical trials; but to satisfy the FDA, a greater than 0.5 log reduction in viral load, at least when evaluating an experimental drug, is what's considered statistically significant. But to Assurbanipal's point, Etay, a viral load drop from 667K to 322K isn't really significant. You may be seeing a reduction by half, but it's barely a 0.5 log reduction. And he's also right in that you need to take a look at the big picture... your viral load trend over time.

Tim  

[tednlou2]

This is what I meant when I said I didn't just post a topic to just have something to post.  These posts often lead to gaining so much information and learning about this virus.  Thank you guys for all the helpful info.  Everyone who posted something has either taught me something or made me think. 

Cue NBC shooting star with "The More You Know"...lol.

So, I need to learn more about the Log10 number I keep seeing on my labs??  My doc never mentions it and I really never understood it.  I know it probably isn't something to focus on that heavily, but would be good to know what it means.

[Tim Horn]

Log calculations are easy -- with the help of a scientific calculator, of course.

If your lab report shows a viral load of 4.2 log¹⁰ copies/mL, for example, simply enter "10" into the calculator, then press the x^y key, and then enter 4.2. Upon pressing the equal sign, the absolute number is calculated: 15,849.

If your lab report shows an absolute viral load of 15,849, simply enter this number into a scientific calculator and press log: 4.2

[Miss Philicia]

They might call you a "verklempt homosexual," as I have been called here, but their experiences are simply not the same, or they are not as susceptible to the same traumas as you have experienced.

Was that me who called you that or someone else -- you know I adore you so, so if it was me it was a term of endearment.

Now, as for anxiety disorders and on topic with tednlouwithnumber, I've had such a diagnosis now for a decade.  I also took benzos up the wazoo for eons and that helped, but I don't really need them any longer.  In my opinion anxiety issues are very hard to lick, but it can be done -- you just have to have a good therapist and you have to keep up with it doing cognitive behavioral sessions.  You've got to go at a steady rate too... none of this off/on stuff over the years, canceling appointments and what not.

I still have anxiety issues, but they're quite controlled now.  More of a low-grade feeling, and it's so diminished now it doesn't even happen every day.  I think I've always had it a bit, but when I was younger it actually helped me perform well -- I always excelled at those state competitions for music and foreign language stuff, etc.  It didn't become a problem until I got lipo and then things went downhill very quickly.  My first 8-9 years of being poz it was not an issue, at least not out of the ordinary.

But frankly tendnlou, I've said if you think starting medications will lessen your anxiety issues then it's a consideration, but the more I've thought about it I kind of doubt in your case it will do much because, as you've stated repeatedly, the condition pre-dates your diagnosis.  I don't k now what else to say but stick with the therapy sessions and make sure your therapist is a good one.

[Nestor]

Tednlou,


I'm happy to hear that your latest numbers are good--as you say, to go from 800 to 700 t-cells is not bad at all, and a lower VL is always nice.  Yesterday my doctor said that I had "a very good immune system".  That was the first time she had ever made such a comment.  If that is true of me, then you, with better t-cells than mine, several years more into HIV than me, have a very good immune system indeed. 

But I understand the way these every-three-month appointments at the clinic can bring out anxiety or depression.

I've gone through similar experiences with my three-monthly labs as well.  Yesterday I went to the doctor to find out my latest numbers.  For several days before my mind had kept wandering back to the numbers and wondering what they'd be; one moment I'd be filled with hope and the next fear, and then I'd realise that I wasn't listening to the person I was talking with because I was obsessed with the numbers.  Of course when I went in I had pencil and paper ready in trembling hands.  My doctor, who is wonderful, as always started by asking me how I'd been lately--were my sinuses ok?  Had I finally had that wisdom tooth pulled out? etc.--and then started telling me I didn't have syphillis and my cholesterol was fine, all the while anxiety was building to a peak.  Finally out came the numbers.  CD4 almost exactly the same as last time, same exact percentage, but lower VL. 

Then begins the tea-leaf reading.  What can this mean?  And, what does that mean?  All it means is the same thing your numbers mean: basically stable numbers.  I thought it was bizarre that for the last four labs in a row, my t-cells were almost exactly the same, whereas, in the three years before that, they had fluctuated wildly between 500 and 800.  But to my doctor, that didn't look much like wild fluctuation at all; as others have explained in this very thread, differences that look great to us are not very significant at all.  I think, after a while, yearly averages should become more interesting, and more important, than individual numbers. 

On the way to the doctor's office I had taken a very long walk on one of the first of our truly beautful days, and felt optimistic and cheerful.  About two hours after leaving the doctor's office, however, I suddenly found myself becoming extremely depressed, and that surprised me.  I don't need to analyse all the reasons for that transient sadness here, but one thing I decided was that I was spending too much time brooding over the fact of having HIV, and endlessly poring over and analysing the numbers wasn't helping.  I'm not saying that I'll forget about it, not have labs done, and go on a spree--of course not--but I was somehow, unconsciously, approaching the revelation of each new set of labs as if they were going to reveal something momentous and then, when nothing of the sort (of course) happened, feeling depressed about it.  That's what I'm going to try to do less of from now on.  Of course, easier said than done!

As for starting meds, I think in this situation there's an element of "waiting for the other shoe to drop" which I suppose is a little bit anxiety-forming.  I'm always imagining that I'm going to crash down to 10 t-cells exactly a week after my labs and then spend three months not knowing about it, and reading in another thread about a forum member to whom that very thing happened did not exactly give me peace of mind on the topic.  But my doctor said such things are extremely rare.  In the meantime I'm just grateful for the reprieve.   

[newt]

Log calculations are easy -- with the help of a scientific calculator, of course.

A conversion table:

http://i-base.info/ttfa/learning-resources/log-value-to-number-conversion-table

You can do the conversion on Google by putting eg log 999 into the search box << erm, change the 999...

- matt

[Assurbanipal]

Said another way, the log(base 10) numbers you get are not new information.  They are just the same viral load numbers you already have expressed n a  different fashion.

You can express any number as 10 raised to a power.   10 is 10 raised to the first power, 100 is 10 raised to the second power, 10,000 is 10 raised to the 4th power.

So a viral load of 10,000 is the same as a log10 viral load of 4.


So since they are the same number but just expressed differently, why use the log values? That's because they allow you to express a multiplier effect as an additive one.  And it is often easier to think and to analyze data expressed in additve terms.

So, for instance, you can either say that a viral load change is significant if it changes up or down by a factor of 3 times (threefold) or you can say it is significant if the log value changes up or down by more than plus or minus .5.   That's because 10 raised to the .5 power is very close to 3. 

So the answer might be, focus on the viral load or on the log10 viral load, but don't assume you will get more info if you focus on both.