Today marks exactly one week from my third appointment with my new infectious disease doctor. The numbers that show up on the result of my next blood test will force me to make a decision about treatment; a decision a small part of me was hoping I would never have to make.
When my very first blood test came back, my viral load was so low it was undetectable. Although my doctor was realistic with me about what that could mean, I heard him say two words that filled my heart with hope: “elite controller.” I learned from my doctor that of all the millions of people in the world infected with HIV, there is a very small group of lucky, rare people who contract HIV, but whose bodies naturally fight off the virus. Elite controllers never take medication, they maintain undetectable viral loads, they have near-perfect immune systems, and they never develop AIDS.
Never have I wanted to be part of a group more than I yearned to be part of the Elite Controllers. To be “elite” would mean no meds, no sickness, no fear, no real physical change in my life.
Although I recognized that the odds were against me, I did some research and found one article that gave me hope. I read about a study which found that a great percentage of elite controllers have autoimmune diseases, or family members with autoimmune diseases/syndromes. Apparently, elite controllers have “adaptable” T-cells that make them more likely to develop autoimmune diseases, but may also be the reason they can naturally fight off HIV. (I will not pretend to understand the science behind it, but to read more about, click here.)
Oddly enough, my grandfather had psoriasis, an autoimmune disease that appears on the skin, and my younger sister has Raynaud’s syndrome, another autoimmune “phenomena.” Could it be? Could my family’s “bad” genetics that makes me prone to autoimmune disorders actually be protecting me from HIV?
My doctor told me that we couldn’t make a real inference from just one blood test. He told me that chances are, I was not an elite controller, but regardless, the undetectable number on my blood work was great news. He told me to keep living my life with only minor changes (healthier eating and daily multivitamins, for example). He sent me out the door and told me that he’d see me in three months for my next blood test.
In three months I went back for blood test #2. With my wanna-be-elite confidence, I was more excited than afraid of what the numbers would say. When these numbers came back, however, they didn’t look so “elite.” My viral load had risen to just over 2,000. Although the doctor explained that this was still a relatively good result, my hopes of being elite were quickly squashed. Numbers don’t lie. And these numbers told me that the virus was starting to replicate in my blood, despite my family’s commonality with other “elites.”
My doctor assured me that these numbers were still a good sign. These new numbers reflected a fairly healthy immune system. My doctor also explained that blood work can fluctuate significantly from day to day, so we needed to see more results before talking about medication. He told me that a pattern or set of numbers over time will tell us what these individual numbers actually mean. He sent me out the door and told me he’d see me again in another three months.
So here I am, three months later, waiting for my next set of numbers. The rational adult in me knows that my viral load has probably elevated since my last blood test, and I will soon have to begin treatment to preserve my immune system. For some reason, however, there is still some part of me that hopes and believes that this third blood test will come back with another undetectable viral load. I guess there is still a little girl inside of me that believes in miracles.
If I don’t have to take medication, I will be free to continue pushing off the reality of my diagnosis. A reality that will inevitably wash over me when I swallow my first antiretroviral. A reality I will probably have to face in mere weeks. Only time (and numbers) will tell...