What could be going on?

[dearestgrandson]

A woman at an HIV support group I go to just called me frantically worried about her daughter who is HIV+.  Her daughter is 19 years old and became HIV after being raped a few years ago. Since finding out she was HIV+ she has been on the same regimen and has had an undetectable viral load ever since she started medications. Her lowest CD4 cell count was 650 or there abouts. The mother said though that since July of 2008 her daughters CD4 cell counts have been dropping even though she has an undetectable viral load. She said that they are now at 444 as of last week. She is frantic that her daughters health is declining and that she will die. She asked me to console her, but I told her I couldn't because I didn't know what was going on. She said the doctor told her and her daughter that it is nothing to worry about. But she is flipping out, which is understandable.

According to the mother, her daughter does not have Hepatitis B, C, Syphillis, herpes, gohnnorhoea, or HPV which I believe can all affect HIV disease progression to some degree or another. She also does not use drugs or drink alcohol.

Why could her CD4 cells be falling? Is it really nothing to worry about? Should she find another doctor? She has an HMO, not a PPO, and is restricted in who she can go see because her primary care physician has to refer her to someone else.

[Assurbanipal]

Because we are focused on our immune system we want to believe that the measurements we get are 100% accurate.  But unfortunately there is a lot of pure random noise.  You could take two blood draws minutes apart and get different results.  The US treatment guidelines say a change in CD4 count is only significant if it is more than 30%. 

So you might think of it as that her count of 650 was more like a range of somewhere between 455 and 845.  And that count of 444 might represent a range of 310 to 578.  There's a lot of room for overlap there.

Because the absolute count varies so much, some folks tend to look more at the CD4 percentage.  Is it declining as well? If its pretty close (within 3%) to where it was before, this might well just be random measurement differences.

Can't tell from your email whether the daughter is seeing a ID doctor or just a general practitioner.  If the downward trend continues or is significant, or if she is not seeing an ID doc, she may want to encourage her daughter to get a referral to an ID doc for a second opinion.

[dearestgrandson]

She is seeing an Infectious Disease specialist, but her primary care physician will apparently not give her a referral to another doctor. And seeing as they have an HMO and not a PPO, they can not see whomever they want, whenever they want.

According to the mother, who I just asked. Her CD4 percentage a few months ago was 35% and it is now down to 28%.

I don't want to freak her out, because I think she is the kind of person to make everyone else sick with worry and having had an HIV+ family member I know that unneccesary worry is very harmful to a person's health.

BTW- I have never read in any of my research that CD4 cells fluctuate 30%. I have read that they can fluctuate +(-) 50 cells, but this is over 200 cells.

[Assurbanipal]

BTW- I have never read in any of my research that CD4 cells fluctuate 30%. I have read that they can fluctuate +(-) 50 cells, but this is over 200 cells.

"A significant change (2 standard deviations) between two tests is approximately a 30% change in the absolute count or an increase or decrease in CD4 percentage by 3 percentage points."

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

The source is the US treatment guidelines p.7


Does look like a significant trend, although those are still pretty good levels.  Freaking out is certainly not a good thing but why not ask for more explanation or a second opinion?   One should be able to do so without freaking out.  One might also point out that there's plenty of time to investigate -- even if the trend line continues her daughter would be a long way from AIDS levels (200 / 14%) and have time to find out what is wrong.


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edited to add -- if you look at people's sig lines where they post results you will see a number of zigs and zags in counts -- mine below shows a jump from the 408 to 729 and then back to 468.  And it's nothing particularly unusual.  The percent is somewhat more stable

[dearestgrandson]

They may have to pay out of pocket, because the HMO will not cover services without a valid referral.

That says it is a "significant change", not a normal fluctuation.

[Assurbanipal]

Well, knowledge is power -- it may be helpful in approaching the doctor to be able to refer to the US treatment guidelines as a way of getting a better explanation or asking for a second opinion as to why a significant downward trend is not worth investigating.

Sometimes one needs to stand up for what one needs -- in a pleasant, professional but firm manner.  It may take more than one session -- but there is time.