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I am feeling rattled and tearful this evening.

I have finally reached a tipping point. After 18 years, the doctors at my hospital finally BELIEVE me.

They accused me of malingering when I had influenza in 2003, dropped ten pounds, and was tachycardic for two months. I wasn't malingering.

The ER treated badly and with scorn in 2012, 2014 and 2021. When I had pneumonia each time and high antibodies. They focused on the neuropsych symptoms while I was focused on "Help me, I am trying not to die, I can't breathe."

I ran a 104 degree fever with the influenza, but no fever and no elevated white blood cell count with the next three pneumonias in 2012, 2014 and 2021. That would be normal if I was over 80, or at least not uncommon. But it is not normal in your 40s and 50s.

The diverticulitis is the tipping point. The CT scan is clear that it is diverticulitis. Again, no elevated white blood cell count. No fever. And I have two bug bites that have been refusing to heal. I am not scratching them. They just aren't getting better.

My question for my doctor was, "Why doesn't my immune system work? And also, I am not comfortable doing the two tests planned this month in a hospital while I have a non-functioning immune system." One would involve bubbles injected into arteries to see if I have a hole in my heart. Seems to me that healing after an arterial puncture would be a good idea.

The reply was, "Let me sent a message to our hematologist oncologist and ask if you should see her or see immunology."

I stopped and picked salmonberries on the way home. Feeling odd and rattled.

I got home and ate and then thought, I don't have to deal with it all alone any more. I am actually believed. After 18 years.

So I think the tears are a reaction, to having to deal with it alone all this time. They still don't believe that it's PANS. Too late this go round to do a Cunningham Panel and I'd rather not have another episode ever.

Meanwhile my doctor is calling it "Lizard Syndrome", naming it after me.

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