Two years off meds

[redhotmuslbear]

This coming Saturday makes 104 weeks and Monday is the full two-year mark, but I had my hivvies check done on the 13th as part of medical clearance for carpal tunnel release surgery.  The CD4 and CD8 results were available when I reported for the procedure on the 18th, but thanks to Labcorp not faxing the viral load results that run a few days behind I waited until the doctor's office mailed me a copy, and it arrived today.

Dammit, I wish I wasn't raised to be an over-achiever.

The CD4s were unchanged from June:  766 (from 768) and 41% (from 39%)

The CD8s at near 900 should have told me that they were being kept busy.

The viral load went up from a freaky 101 to a still remarkable, though not fabulous, 360.

....geez, I sound a relative newcomer, getting rattled by the variation in numbers and missing the big picture that my immune system is holding its own, just as it did for fifteen-plus years before I leaped at meds when finally diagnosed.  Maybe it's the last of the IV anesthesia getting out of my system (such an awesome excuse this week!).  Maybe it's spending the last two weeks writing about being in an abusive relationship during college.  Maybe it's spending the weekend on the couch, thinking of my first consensual sexual relationship with another boy that lasted from 8 to 14 and recalling how hard his death from AIDS hit me in the 90s.

Here's to a few more.

[dufusmaximus]

I'm glad you are checking your #'s and all.  Can I ask why you went off meds? Was there a really bad side effect? Were they not working for you?  Just curious.

Also read your c.t. surgery went well - congrats!  Pain is no fun.

I should also be suffering c.t., but I have, um, very strong forearms from, um, typing - yeah, that's it, typing!  hahahah

[PASSIONATEromantic]

CONGRATULATIONS on your 2-YEAR ANNIVERSARY...
how did you make the decision to "go off" your meds...
how often do you "check" your counts...
I have often wondered when I would have an "off the meds" conversation with my doctors and I think
you have just INSPIRED me....THANKS!
and GOoDluck for continued GOoDhealth...
michael

[redhotmuslbear]

I'm glad you are checking your #'s and all.  Can I ask why you went off meds? Was there a really bad side effect? Were they not working for you?  Just curious.

This is fun tale of denial and chance.

I went off meds 10/1/05 in order to qualify for a investigational study of an off-label use of an existing rhematoid arthritis drug to modulate CD4 proliferation.  My primary doc had encouraged me since my "diagnosis" in 1998 to get involved as a research volunteer, and over seven years we had done some adventurous things with meds on our own -- Ziagen monotherapy for two years, then rapidly rotating monotherapies of Viread and Viramune for my last two years on meds, and even an eight-month drug holiday in between.  We ended the odd drug regimens when my viral load finally became detectable in the low 50s to 100 each time, my being kinda chicken-sh^t, and the drug holiday wasn't so great because I was a hyper-sexual barebacking top who got 3 STIs during that time.  Still, we also knew that in May 1998, when the doc insisted on doing antibody test when I came down with hep A, my viral load was 680K, but four weeks after tapering onto HIV meds (3TC, then AZT, then Crixivan) it was almost below 400, the limit of detection at the time.  "David, that's just not normal!" he declared.

So, fast-forward to October 2005..... by that time we had also learned that around Christmas 1994 I was tested for HIV and found posiitive after a neurosurgeon cut himself while doing the last of my 24 brain surgeries.  The surgeon made certain that he got prophylaxis meds, but he told me the news while I was still pretty out of it and made no attempt to have my primary or anyone else follow up with me.  We also found that there were samples of my spinal fluid from 1983 in storage in Houston--they were later tested and found to have HIV.  My doc considered me a long-term non-progressor, and NIH made the confirmation in April 2006 after I had been through their meds study and found to be on placebo--my CD4s had remained in the 700-800 range (35-42%) while my viral load had risen to 4000 then dropped to 75.  NIH found one genetic trait that favored survival via aggressive CD8 response to HIV, and they asked me to consider staying off meds indefinitely as part of their LTNP protocol--I jumped at the opportunity.

Honestly, being labelled an LTNP and staying off meds has been a bigger psychological jolt than my diagnosis in 1998.  I had suspected for 15 years that the man from whom I contracted syphilis in 1982 (yes, at 17 years old) also gave me HIV, but it could have been any of a few hundred men in that timeframe.  I had the seroconversion syndrome for several weeks like I had seen adult friends have and then develop one OI or another, so I put my head down and tried to forget and live as "clean" as possible.  When the doctor broke the news in 1998--he was crying on the phone--it was a relief to have the fear released and to be able to deal with my adversary openly and constructively.  The news certainly helped me push forward professionally.  Now, accepting my lot as an LTNP lately had made me hyper-conscious of mortality somehow and more mindful of how random and inter-related the events and conditions in our live really are.

Namaste,
David