“For the moment, at least, I was Samson without his hair.”
Many of us living with HIV and other potentially life-threatening conditions know the anxiety well, the fear and self-limiting manifested in those hours, weeks, and years waiting for the proverbial “other shoe” to drop. We can spend hours telling others the intimate details of our physical ailments, but we can’t share the experience of demoralization--helplessness that descends into hopelessness in the face of an existential threat--that often accompanies a diagnosis. Absent social support, knowledge, and empowerment or with repeated experiences that evoke demoralization, we present symptoms of depression and the potential for self-harm including suicide.
I know that state of deep distress from my adventures in brain surgery, or at least the first fifteen years of them, though I have been fortunate to never be disheartened in my years with HIV. In denial, perhaps, but never demoralized, even as The Shoe came out of nowhere in recent weeks.
**DO NOT TRY THIS AT HOME**
On September 30, 2005 I took my last dose of antiretrovirals after having labs drawn that would show a viral load of 60 following over five years of supervised monotherapies and treatment interruptions. I was finally ready to screen for a clinical study at the National Institutes of Health, and the first step was to be off of meds for 90 days. After completing the placebo arm of a thirty-day, double-blind meds study with a viral load of 75, in April 2006 I was enrolled in the NIH’s long-term non-progressor (or HIV controller) cohort and agreed to remain off of ARVs indefinitely. My appreciation of the seeming randomness of fortunes in living with HIV was magnified greatly.
Over the years, the study docs learned more about how my immune system exerts control over HIV, and my private physicians and I grew more comfortable with letting the CD8+ lymphocytes work their magic. If I was in the throes of or recovering from some other infection, the viral load might creep up around 1000; otherwise, it hovered around 100. We went to just one lab order six months from my NIH visits, and then we relied on the NIH labs alone -- if the big risk was from other critters, we remained vigilant against them.
In July 2014 I returned from Asia and Australia with a yeast infection that had ascended into one kidney: my primary doc ran HIV labs out of concern, and the viral load was 27,000. Eight months later at NIH the virus was undetectable, still without meds.
Near the end of February 2016, just five weeks before my most recent study visit at NIH, I began to experience gastrointestinal distress unlike any I had felt before. I pleaded for an urgent appointment at my primary provider’s office and saw another member of the practice with gut symptoms in addition to severe joint pain throughout my body. My fear of being exposed to a local norovirus outbreak was quickly allayed, and we talked through a restricted diet and over-the-counter products to help quell my angry intestines.
Then, the doctor asked me to submit to routine HIV labs in addition blood chemistry, as well as an analysis of CD4+ lymphocytes for regulatory T-cell or T-regs. In a moment I regretted having taken Immunology I at the NIH graduate school four years ago, as I knew that T-regs provide a feedback function to “turn down” CD4+ recruitment and associated inflammatory processes -- low Tregs mean that inflammation runs amok, and the body can’t control it.
Within 48 hours my gut issues subsided. Two more days later the doctor called. My CD4s were the lowest they had been in 18 years, my Tregs were less than one-fifth the mean of the reference range, and my viral load was 102,000.
We agreed to wait for the NIH labs to be done before taking any action other than my pursuing some mundane traditional-medicine alternatives for alleviating inflammation.
I shared these new numbers with my NIH study doc the next day, and he was very concerned. Several other non-HLA-B27+/B57+ members of his controller cohort had spontaneously lost virologic control in recent years. The year’s study labs and monster syringes of blood for future use might help him and his lab better understand why and how long-term control erodes.
He also encouraged me to do what I needed to do to feel in control of my health, including re-starting ARVs if I wished.
A week later we found that my CD4s were back to my normal; however, the viral load was only (right! …..only!) down to 66,000 -- this wasn’t a level or a rate of decline with which I could feel comfortable.
For the moment, at least, I was Samson without his hair. I could also look forward to competing again in the HIV pharmaceutical oppression Olympics!!! Oh, that’s right… the newly diagnosed start on single-tablet regimens these days.
The next day i spoke with my primary provider, and he had me come in to have blood drawn for HIV genotyping. This wasn’t done before I started ARVs in 1998. Yet, though I had never had a viral rebound while on ARVs, I appreciated the opportunity to confirm that I have wild-type virus free of resistance mutations or virus resistant to all three classes of drugs I had taken as monotherapy.
Last week the results appeared -- free of resistance mutations for all drug classes -- by which time I had selected my drug of choice from the modern cornucopia, Odefsey.
Next week I have another round of labs done before starting meds again, and I won’t have to explain why it’s okay that I’m not on meds….at least for a year or two.