I'm sitting here on a rainy, windy, Monday morning, wanting to write something profound about my daughter's illness and recovery. Strangely, I'm a feeling a little unsettled that I have nothing to write. We've been treating chronic lyme, several co-infections, for months now, using herbal tinctures recommended by Stephen Buhner in his Healing Lyme books, and a protocol of nutritional supports. Typically, when I've felt inclined to write, I could come here and let it all pour out, but today the inclinations brought me to a blank page. Nothing bubbling over, no emotions running raw. Still, I am compelled for some reason, so I sit.
Healing is a journey just as illness was but almost ellusive in its conscious experience. I set out many years ago to figure out what was wrong with my daughter. I needed to "fix" my kid. A phrase that doesn't sound right to me now, sitting here in relative calm, knowing my little girl is mostly healthy. "Fix my kid" sounds blunt and detached, but in those dark moments when the world was crashing down around us, screams heard throughout the house and into the street I am sure, those were the words that reverberated up and out from the depths of my soul. In those darkest of hours, screams of spiders that were not there and "bad thoughts" that stormed in to her head as we turned out the light each night. Screams that startled me upright from a sound sleep, bolting to grab her and hold her, desperately trying to bring her a sense of safety and comfort. My baby, shaking with fear, eyes darting around a darkened room, legs flailing away at the invisible assaults she felt just as surely as I felt the weight of her in my arms. In those moments, in those desperate moments a parent screams in to the silence, I NEED TO FIX MY KID.
My silent mind screaming, I had to fix this. It was all I could think. How on earth I cared for the rest of my family in those days I do not know. A distant foggy memory stored at the forefront of my memory, standing ready at the call, for the moments I remember. And I remember. The fog lifts and there it is, in my face, so close I can feel the stone in my heart and the adrenaline in my veins, and the shaking light weight of her in my arms. A memory that is far away until it comes rushing back and takes my breath away. I needed to fix my kid. Why can't anyone help me. Screaming silently in to the blackness of the night and of the illness and of the hell she was in.
I broke that silence with a friend one night. A wonderful light in the world, this friend had helped me get my daughter through one of her worst nights. I didn't write everything about what was happening, but the following messages started at 10:39 and continued through the early morning hours.
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Ba
Omg [FRIEND] I am at my breaking point. Only I don't have the luxury of breaking. Amelia has completely relapsed. I am so mentally and physically exhausted. I just can't believe that it keeps getting worse every day. Praying to a God I don't believe in that this new antibiotic works and we get relief in the next couple of days. Send me strength.
Later
The symptoms are more severe now and so hard. She has been freaking out on and off since 830 bedtime. Ocd about everything related to sleep. I get her calmed down and we lie down. And within 10 mins she's kicking and agitated again. Now upset that stuffed animals aren't placed right. Earlier bc her hair felt itchy on her neck and pillow. Last night up for 2 hours with joint pain.every morning huge meltdowns and even some rages about clothing.
Later
Now she's crying. I can't help her and it's killing me
Later
I just had her come in to my arms and I held her firmly. Talked through a couple things. I think it was a panic attack. When I held her she cried that she didn't know what to wear. Now she's calm and chit chatting. Incessant chatter. Questions and thoughts keep pouring out.
Later
I can't believe she's still awake. Says she's going to open a store for organic food and put up a sign up for people with disorders so they know it's safe to eat.
Later
Now talk of death. Signing off to do that grounding thing.n thank you so much! I feel better able to help her now. Oh and "how did the George Washington die?"
I hardly remember messaging you last night. I was so exhausted and scared. Thank you for being there. She fell asleep in my arms at midnight. Then at 2AM woke me up with kicking and jerking her legs. Very agitated but half asleep. I sat in the recliner with her on my chest like you would an infant and it seemed to calm her.
Later
It could be a progression of the PANS symptoms or it could be a bad reaction to a new antibiotic we added yesterday and a change in supplement dosage. I let her sleep in and drove her to school this morning. She was still a bit manic but functioning pretty well.
Thanks so much for being there. 
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I just kept thinking, I can not let her suffer. It's been too long, too hard, and I've got to fix this before it is too late. I didn't know what "too late" meant but when your child is sick and tortured a parent just feels a sense of urgency. And now, we have healing. But those memories are on guard, ready to pour back in, and sometimes they do. Out of nowhere I realize my adrenaline has spiked, as I pick up on the teeniest tiniest fluke in her behavior. Every little thing could be the start of a big thing. A stuffy nose could send us spiraling. But for now, I have fixed my kid. For now.
Strength. Hope. Love.
