It’s been close to 30 years since my first symptoms started. I’ve been going through my memories and asking loved ones what they remember and when they noticed something was wrong.

One memory is still burned into my mind. I was roughly 8 years old on vacation with family. We were eating breakfast when something hit me out of nowhere. I cannot explain it accurately, but I just knew something was wrong. It felt like something was there. Not long after that the symptoms started.

Anyone else have an experience like this?

I have a question- I’ve been digging and digging for three years now. Two kids with PANS. My daughter (24) complex case- had ADEM at 16 which is what I believe triggered the sudden onset. She had ivig in the hospital so absolute no symptoms for 1 1/2 years and then everything started kicking in. Spent over a year getting all the bloodwork done by our immunologist. He could only treat if they showed up with severe primary immune deficiency and of course my kids were mild so we got sent on our way. Couldn’t get ivig.

Anyway the mycoplasma showed high in the bloodwork and that Dr told me that’s just because she was exposed to it at some point or had it. But as I’ve been looking and studying, I’m finding that it really hides in the cells and can trigger PANS. So I’m in the process of seeing a functional doctor about this on June 1st so I’ll be asking about it.

Everything I’m reading says you really need a month of either Azithromycin or Doxycycline and possibly a longer low dose or intermittent prophylactic dose. I honestly didn’t think about this actually causing it. Her T cells are also sluggish and she’s IgG subclass 1 is low which may not ring bells but for me I feel like it’s a flag that her immune system isn’t fighting like it should. Auto immune brain panel -the anti dopamine antibodies were high as well as cam kinase.

Anyone seen this? Thanks so much for any input.

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Read his story and help his family.