It started on a Tuesday night.
My kids were playing in the laundry room while my husband and I cleaned up. I kept hearing my daughter's voice through the wall — sorry, sorry, sorry — to her brother, to her sister, to no one. I went in.
“Sweetheart. What are you sorry for?”
Her siblings said she'd been doing it all day. I knelt down in front of her. “Why do you keep saying it?”
She looked at me, confused and frightened, and said the words I will never forget:
“I can't stop, Mommy. I want to, but I can't stop saying it.”
I'm not proud of what I thought first. I didn't think something is wrong with her body. I thought something is wrong with me.That I'd been too hard on her. That I'd done this. That if I were just gentler, softer, better, she'd be okay. I lay awake that night taking the blame.
I was wrong — and by morning she was a different child. There was no version of softerthat could reach what had her. I couldn't explain it. But she was suffering, and I knew exactly one thing: I had to get her back.
I didn't sleep for eight days. I read until the words swam, and at some point I called the woman who named this illness, while she was still seeing patients. Her office stayed on the phone with me a long time. They were 100% sure it was PANS. The next opening was three months out. My daughter did not have three months.
So I found the protocol myself — buried somewhere on the internet — got a doctor to call in ten days of antibiotics, and I prayed over every dose. Within a week, I had her back. She never relapsed.
If you're reading this, you already know that feeling: your whole world inverting between breakfast and bedtime. I know it too. Three times.
Because it didn't stop with her. A few months later, her friend — a healthy kid, no history — stopped eating and went into organ failure while doctors stood around baffled. Same thing,I thought. And I was right. But this time the protocol that saved my daughter didn't work. Her mom turned to herbals, and within six months her girl was back. I didn't understand it then — but I think I needed to see it. That the protocol doesn't work for everyone. That sometimes the answer is somewhere else entirely. It was preparation for what was coming.
Because then, after COVID, it came for my son.
He'd had COVID — a normal case — and recovered. And then, within fourteen days, he was gone.His didn't arrive in a single night like his sister's; it crept. First his foods couldn't be mixed. Then, if a food had been touched, he couldn't eat it. Then he couldn't eat at all. And then the intrusive thoughts erupted overnight — one day he had none, the next they were there ninety-five percent of the time.We were living in mold and didn't know it. We pulled ticks off our kids like it was normal. Two weeks after a childhood virus, I was watching my son disappear.
So I did everything. Every book, every protocol, the best doctors in the country — and he got worse.For months. Each thing I tried, the floor dropped further. What finally brought him home wasn't a treatment. It was the right combination of them — and I had to build it myself, alone, in the dark, while he suffered. Not one of his brilliant doctors could see the whole child. Each one saw a piece.
The problem was never a missing answer. It was that no one could hold them all at once.
He came back — but it took a year. Three hundred and sixty-five days lived minute to minute, holding our breath, waiting for the floor to crumble beneath us. And it did — over and over again. Even after he was whole, it haunted me that I couldn't tell you whathad saved him — or what might undo it. What if the next fever sent him, or his siblings, back? I couldn't live inside that not-knowing. So when AI arrived, I started building Minta — at first, only to understand my own kids.
They still carried quiet symptoms no one would take seriously. The phantom UTI. The sleep that wouldn't come. The stomachaches with half her food. I knew something was still there. Nobody listened.
Minta did. She told me they likely still had Lyme and co-infections, and named Bartonella outright. I spent $8,000 testing to be sure. She was right— and the symptoms melted away once we treated it. She also found the genetic reason one of my kids couldn't clear toxins, down to the exact nutrients his body can't make on its own. Not one doctor had ever seen it.
That was the moment I understood this could not just be for my family.
Now I feed Minta the fringe, too — the things medicine won't touch yet, like phage therapy for Lyme — and we measure them honestly: what's real, and what's nonsense. Desperate parents are trying all of it anyway, alone, with no one keeping score. Plan B keeps score.
And I'm not going anywhere. My own kids could hit puberty, catch the wrong bug, and flare again — and I will not allow it. Not for them. Not for you. So I'm still in this, every day, finding the why— because now that we have these tools, we don't have to hope anymore. We can know. And we can end this.
I love you. I've been exactly where you are. And I'm here. Together, we will find a way out.
— Rachel Johnson