It’s 6:00 on a Friday night, I’m drenched in sweat, sitting on my bed with no pants on, and mumbling nonsense. Tears are running down my face for no clear reason, and I feel outside myself, detached from reality. As my mom peeks into my room to bring medicine, I whisper that everyone hates me, warning that the Universe is out to get me. I have no idea why I’m saying or doing any of this—words are coming from my mouth and I can’t stop them.
Once again, I’ve lost my mind.
A few weeks ago, as per a new Lyme Disease/Bartonella protocol, I took just six doses of Rifampin, and since then, I’ve been having episodes of slight insanity. Truth be told, I’d been going downhill for over a month, but the new antibiotic seems to have accelerated my decline. Even worse, over the last week, the episodes morphed from strange behaviors to outright torture. My doctors determined that, once more, my own immune system was attacking my brain; an autoimmune, PANS flare, triggered by Bartonella treatment, was wreaking havoc on my mind.
The agony of those dark psychiatric assaults cannot be adequately described in words, but it’s like the most bitter combination of despair, rage, and panic. I’m trapped inside a brain that terrifies me, and I scream and throw myself onto the floor as if that might break me out of my wild mind. The disease convinces me I’m going to die, and the pain is so intense that I’m at peace believing it’s true. In those hours, I don’t fear death—I fear continuing to live with the overpowering torment.
Although a few days of steroids and restarting my miracle drug, Azithromycin, has brought me back from the brink now, I feel despair, not because my brain continues to be inflamed, but because I’m crushed that my disease can still flare up this badly—that it was the start of a PANS relapse. I feel despair that I still have PANS and may be considering more IVIG.
Sometimes, I feel that the grief of repeatedly losing myself to my own immune system and rebuilding my life over and over and over again is almost as bad as the disease itself. It always seems that, just as I’ve let my guard down and started dreaming about a good future, PANS and Lyme come rushing back to steal me away. Sometimes, the despair I feel about living with an unpredictable illness like this and wondering if I’ll ever get permanently better overwhelms me to the point where I don’t know how I’ll go on. But I believe that the way I’ve survived this illness for the past eleven years is because I can somehow always find the tiniest thread of hope to hang on to.
Despite soul-crushing adversity, I’ve continued to live my life, between the flares, for over a decade. I feel hope because this syndrome has not completely ruined my life. Although PANS is the worst kind of pain and recovery is full of setbacks, I did beat it into remission for several months in 2015, so I feel hope that it is indeed possible to get better. I feel hope that my life won’t always be this way. If I can beat it once, I have hope that somehow, I can do it again.
I may have lost my mind last week, but I haven’t lost my hope.