Learning the Numbers

[Corey Bryant]

I was diagnosed on 11 Sep 2006.  So far - things have been good.  I cannot tell you when I was infected, etc.  I had not been to a doctor in about ten years before that.  That's probably another thread - I'll look for an introduction one in a bit but I have questions now.

The first time - my CD4 was 754 and my viral load was 55,000.  Then in late December my CD4 was 750 and in January and my viral load was 150,000 (they messed up the blood work). 

I just got my results yesterday and my CD was 634 and the viral load was 10,661.

My doctor does it backwards, I go in - tell him how I am feeling and then he gives me the lab results.  I have to pressure the office for a few days to get my results or ask my primary to walk across the hall to his office to get the results.  I feel he should give me the labs and then I fo in to see him - but another thread (sorry - I digress - a lot of things to talk about, you know). 

So any idea with my current numbers - what does the viral load mean, with it being that load?  I sort of know what it means, but it's a good thing, right?

No I am on no HIV medications at this time. 

[DanielMark]

Hi Corey,

And welcome.

Others will probably give you more specific feedback and opinions about your numbers but the fact that you are not on meds yet will be a big factor in your lab results. I would suggest you discuss things thoroughly with your doctor, or find one who will if this one won’t.

Daniel

[aztecan]

Hey Corey,

Welcome to our eclectic family here.  Glad you found us.

To answer your question, your numbers look good. The viral load is relatively low and your CD4s are well within the "safe zone." In fact, your CD4s are normal, even for someone who is negative.

You said they messed up the bloodwork on the second set of labs. I presume that is why the viral load is so much different.

If they don't handle the blood sample properly, the numbers can be really skewed. Trust me, I've been there and it irks me when it happens.

I am looking forward to hearing more about you.

Edited to add: Your doctor should have explained this to you. One of the most important things people with HIV need is a good relationship with a good doctor.

I get the impression you may not have that at the moment. It might be something you may wish to think about over the long term.

HUGS,

Mark

[Corey Bryant]

Actually, the second time they drew the bloodwork, they forgot to draw the tube for the viral load, so I had to go back. 

The numbers did look a bit off to me, 50,000 one time, then 150,000 the next, and not about 10,000.  Quite a bit difference but it is difficult to get an answer.  I usually take my partner because my memory is sporadic but I don't remember him ever telling me about these numbers.

And searching online does not yield that great of a result either.  One page I found said that the viral load should be taken two weeks after the first - and mine was taken about 4 months.

I have an appointment with my primary on the 11th.  I have told him that the care is not what one would expect - but that office is more like a corporation.  People coming and leaving.  And seems like no one knows what is happening

[Blixer]

Corey,

Did the doctor give you the CD4 percentage?  The assay variability within the Viral Load test is fairly wide.  The 150,000 does seem high with the rest of your numbers and the labs do screw things up sometimes.  But based on your numbers and on what I've read, you are in a good position to just monitor for a while.  Like others have said, your CD4 is in the normal range.  Your last VL measurement would be considered in the low range.  So sit back and get another test or two under your belt and then look at the trend.  From the numbers you presented there isn't anything to worry about at this point.  Although I would agree with others that there are some things your doctor should be explaining to you.  Is your doctor the only one around or do you have other options.  I am of the belief that selecting the very best HIV doctor is probably the most important decision you will make through this whole process.  And don't be afraid to change doctors.  I changed after my very first visit because I was wasn't comfortable with the way the office I originally selected was handling things.

[Miss Philicia]

Lab screw ups and the doctor having to be pressured for your lab results leaves me somewhat uncomfortable.  How large is is patient roster of HIV patients?  From what I can tell you live quite close to Denver so I'd think you'd have many resources for HIV specialists if you are not comfortable with your present one.

I wholeheartedly agree with the statements above that this is of primary importance, if not THE most important.

[Corey Bryant]

CD4 percentage?  No, I don't remember that as well.  My PCP is just right across the hall so that sort of makes it a little convenient.  But from what I have seen so far of the HIV specialist - I have not been too happy with.  A lot of things, I just sort of let slip - this is probably one of them.  He is the expert in this field, but what I have been reading so far about this, I feel something is not right

I have asked CAP (Colorado AIDS Project) to let me know of another doctor - waiting on them. 

MY PCP has been telling me I should really consider a treatment plan - he is a really great doctor, I think.  I told him I would ask the specialist, now waiting on that. 

It does seem like I might consider another physician, but I am also a bit fearful of changing because I don't want to upset anyone.  (I used to manage a medical answering service.)  After all, they might be professional but if they take it personally, it could affect the way they decide on the best treatment plan. 

The numbers though - the VL number especially - just really seemed a bit off.  Plus on the lab sheet it said anything:

Changes of five-fold or more in viral-load are significant with regard to predicting disease progression and monitoring efficiency of antivral therapy.

I know I should speak to the doctor, and I did call him on Friday.  Actually what had happened, I called one office about 9:30, spoke with a receptionist.  I asked her if my labs were back.  She then transferred me to a nurse who I had to explain the situation again to.  The nurse said she would have someone call me back. 

About 2:30p, I called and spoke with the receptionist.  She said that the nurse I spoke with faxed the results over to another nurse in another office and I needed to call that office.  I called that office, and spoke with the nurse.  She asked if she could fax the results and i told her yes.

After the results came in, I called her back to ask her what the numbers might be.  And at first (since the viral load number was 10,661), I did not think that was my number.  She put me on hold while she went to ask a doctor.  After about a minute, she came back and told me that was my viral load.  I asked her what that meant, and she said she did not know.  She said my doctor was at the hospital doing rounds.

I asked if he was going to check in so maybe he could go over the results.  She said she could page him and he would check in them.  I told her yes.  But he has yet to return my call.

All in all, I think it is a bit off.  It's my third visit to him.  Common sense (to me) would be to have the labs drawn before I see him.  That way, he has the results and we could discuss that. 

I just did not know how all of this worked.  My PCP, he faxes orders to the lab - I go to the lab, get the blood drawn and then go into the office.  It seems like an orderly procedure. 

Sorry about the long post, but I was hoping to give y'all a scenario

[Matty the Damned]

Hey Corey,

Welcome to the Forums.

Matty the Damned agrees with the others when they tell you that the CD4 % is a key indicator of immune function. Given that understanding one's labs is all about watching trends over time, the CD4 % is important because it doesn't fluctuate wildly as the absolute CD4 result is prone to do.

Also, don't be too concerned about upsetting people by changing doctors. Health professionals are just that professionals and you have a right to seek the best standard of care that is available to you. I would be most surprised if a doctor would compromise your treatment plan because he or she felt slighted by your decision to seek care elsewhere.

Fondly,

MtD

[Miss Philicia]

I don't do this dual PCP/HIV specialist stuff.  My PCP has always been an actual HIV specialist for 15 years.  Seems so cumbersome that other way... is this some odd insurance requirement?  Do a lot of other people have this situation?

[Nico]

Corey,
I agree with Philly.  Having two docs make no sense.  My PCP is my ID doc.  I think personally that you may want to consider meds as an option.  Just my opinion since I got "PCP" with over 300 T's and a VL of less than 50K. 

That being said, I am only speaking about my situation and yours can and will be probably different from mine.  Listen to all on here.  There is a lot of great advice.  I am only sharing my story.

Thanks for your story and welcome.
Rog

[Iggy]

Corey,

Similar to what already is stated - curious if you can find one doc that has a better grasp on the whole then the two you are seeing now?

I find it really weird that your one doc never discussed percentages.

[Corey Bryant]

I'll wait to see what my PCP says about it on the 11th.  He was the one that referred me to the specialist since that doctor was a specialist in HIV and kept up-to-date on the happenings in that world.  He moved out here about the same time we did and actually lives in the same HOA. His practice is not that big so he has the ability to take time with his patients.  Most (like the specialist) see you for maybe 5 minutes, and then have a nurse or someone else do everything.  I get that feeling from this office. 

I don't think I am saying I want to be treated special, but from what I have been reading so far - there is still a lot that he has not told me. 

I had done a little research on Dr Lawrence Scariano and I found that article, which seemed like he was a caring doctor.  And he is.  I'll admit, it did freak me out a bit when he had a picture of himself shaking hands with Bush - I almost walked out.  But he is not conservative, that's for sure.

[Miss Philicia]

Corey, you should (IMO) find out from whatever insurance you have if you have the ability to select an Infectious Disease doctor as your PCP.  That's usually how it is done if you want to cut out a non-HIV doctor as your PCP.  In my past experience when you do it that way the specialist spends more than five minutes with you, though I'd say the average time face-to-face is generally around 15-20 minutes depending on how routine the visit is.  This is, of course, exclusive of things they may have other staff do such as drawing blood and maybe routine things like recording your weight.

Then again, both my HIV specialists in Manhattan actually drew my blood themselves... how nice is that.  Plus we'd chat endlessly about the latest hot restaurants and home life, etc. (the two I had were both gay... one wore Tweety bird socks all the time!).  Not sure how integrating you are in gay culture, but I find it helpful to get personal references from others in my area for doctors -- cuts to the chase if you want a gay-friendly or even actually gay doctor.

[aztecan]

Hey Corey,

I did the two-doc thing for about five years. I didn't have any choice. The nearest HIV doc was 200 miles away.

It works fine as long as the two docs communicate once in a while. They would update each other on things that had happened, usually not much because I was disgustingly healthy.

Now, I have one doc who does it all and he is local. That is really nice, especially when things happen and you need to talk to him.

Now, in a dream world, he would draw my labs too. But, the lab at the hospital does it here. Guess you can't have it all.

HUGS,

Mark

[Corey Bryant]

Thanks for all the suggestions. 

We are not really integrated into the gay community at all - I used to serve on the Board on one way back when.  But not any longer