Tcells, contingencies and the Chinese

[Razorbill]

Hey guys,
  I thought I'd share my numbers situation and a response I got from The Body's Dr. Eric Daar.  I've posted before about having an undetectable viral load and a steady 22% ratio since 2005.  And yet since that time, each time I have been tested my tcells have slipped 20-40 give or take.  From 433 to 300.  My own doctor says he expects me to remain healthy - sometimes he's so laid back I could fall asleep.  The online doctor however pretty much shares that view.  So I guess that leaves me hangin'.  I'll copy the on line exchange into a separate post.
  Contingencies: well all times lines flow together into a tangle.  I've just had blood drawn, am going to doctor again the 25th, and taking a 12 day meds break on the 30th.  I also just shelled the 120 bucks to renew my meds 'cause the cupboard was bare.  If my tcells dip again, not only will I be mentally stressed, but I'll demand a change no matter what relaxed attitude the doctors have.
  Oh yea the Chinese.  My trip to China begins 6/30.  I have to pass through a quarantine officer and lie about my status on a form - so no drugs are going with me through the border.  For 12 days I'm not infected.  Of course depending on the tests, the timing of this may be suboptimal.  Contingencies.

[Razorbill]

Here's the letter:

What's going on w/Tcells?
Apr 9, 2007
Dear Doctor, I am currently taking Truvada/Norvir/Reyataz. I am tolerating these meds well. As of 2/2007, my VL is undetectable and my % is currently at 21 with tcells at 300. Seems good, no? Problem is my tcell numbers have been creeping downward for over a year. Since 10/2005 my % has remained constant at 21 and my viral load undetectable, yet my tcells have dropped from 433 to 300, in increments of 20 to 50 each time tested. What gives? Where does it stop? Are my doctor and I missing something? I have had no OI's or serious health issues in the interim. I do not smoke or do drugs. I adhere to my meds. Can I expect a surprise increase for my birthday in May?    My doc says stay the course because of the VL and the %. Yet I am feeling something is slipping. Any thoughts? Thank you so much. Ernie
 
Response from Dr. Daar

Hi Ernie, Thank you for your posting.
Based upon what you have written I tend to agree with your provider that you should stay the course. In general, most people who maintain undetectable levels of virus will remain well regardless of their CD4 cells. In your case your CD4 cell numbers remain good and interestingly associated with stable CD4%. What this usually means is that your total white blood count and/or lymphocyte count is decreasing, as opposed to selective loss of CD4 cells that occurs with HIV disease progression.
You should sit down with your provider and review your clinical situation and medications to make sure there are no explanations for a decline in total white blood cells or lymphocytes. Other than this, I would continue to watch and consistently take your medications. I would not be surprised if you do start to see an increase in the future. Regardless, you should do fine.
Best, Eric    
 

[Miss Philicia]

The key is your question "Where does it stop?"

They don't answer this... so if the number was 200 instead of 300 then would they advocate a change?  150?  50? 5? Odd that they won't say.  Basically you're asking for a metric and they won't give you one.

ps: welcome back!

[Razorbill]

Thanks for the welcome back!  My question exactly Philly.  If i have one tcell and 2 t8 cells then my ratio is 50% - somehow that doesn't reassure me.

[aztecan]

Hey Ernie,

Glad to see you again. I think I would be somewhat upset about this as well. Its one thing if you had 1,000 t cells and lost 50 or 100. But to continually drop is worrisome.

The doc from The Body made an interesting point. Why would your overall lymphocyte or total white blood cell count be dropping, as indicated by the drop in T-cells but not the percentage?

I would have a heart-to-heart with my doc were I you.

Keep us posted on how this works out. Oh, and enjoy China. Will we get to see a few photos?

HUGS,

Mark

[Razorbill]

Hey Aztecan,
   The doc and I will have some direction after our next meeting.  And yes I'll definitely post a pic or two from China.  I may even post a hello from China.  xoxo
Ernie

[Razorbill]

Help!  I need ideas.  Well, I called the doc's office & my tcells dropped 100 in a little over 3 months to 200.  Still no viral load.  I'm exasperated.  What a bum deal - I was hoping to hold the line for China.  I was hoping not to have this continue to hang over my head.  Guess that's what I get - nada.  Anyway, the story about doing fine even with 200 as long as I have no viral load isn't making me happy.  I'll see my doc on Monday.  Either I need new HIV treatment (But no VL?), or I have some other condition destroying my immune system - all of it not just T4s.  If one of the smart guys could give me a few avenues of thought, I'd be most grateful.

[Razorbill]

bump

I really could use others experiences or ideas.  Or put it in perspective for me so I know it's not significant.  That would help too.