I don't have PANDAS because in the United States we barely believe in it in children and we don't at all in adults.
I don't have PANDAS because even though one psychiatrist said I did, but he retired, and the next one says I didn't. Then third one said nothing, the present one says no, but has not read the guidelines. She does read the guidelines, finally.
I don't have PANDAS because my primary care doctor won't read the guidelines even after I have been her patient for seven years.
I don't have PANDAS because my pulmonologist has never heard of it.
I don't have PANDAS because it would be a lot easier to put me on a mood stabilizer to shut me up than listen to me.
I don't have PANDAS because I am labelled difficult because I am afraid to take a mood stabilizer because I do not get a fever or a white count so my main symptom of infection is that other doctors think that I am manic though I am hypoxic and short of breath. They want to fix my mood while I want to not die of pneumonia, so our goals are at odds. It is harder to dismiss me as "just manic again" since I now need oxygen. Mania doesn't cause that.
I don't have PANDAS because I am a doctor and if I had PANDAS my fellow local doctors would feel guilty that they have told each other that I am bipolar and manic for the last 18 years and have shunned me at the county medical meetings and won't even send me the invitations, except for one who forwards them. He says he's given them my email more than once and he can't understand why they don't include me.
I don't have PANDAS because Seattle Children's doesn't allow the Cunningham Panel to be drawn and they say there is not enough evidence yet.
I don't have PANDAS because I can't afford to pay $925 on my own for the Cunningham Panel and anyhow my antibody level is back to whatever is my new baseline, higher than before no doubt.
I don't have PANDAS because the other doctors are frightened: if I have PANDAS then who else does and if I have chronic fatigue caused by hypoxia and fibromyalgia and it's related to PANDAS then who else would they have to test and neuropsychiatric is a whole different thing from psychiatric and we swear that we don't know what causes chronic fatigue and fibromyalgia.
I don't have PANDAS because I am an adult who lives in the US though if I was in Canada or Europe I could in fact have PANDAS.
I don't have PANDAS because in the United States we barely believe in it in children and we don't at all in adults.
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Written for WHAT'S YOUR WHY? Why is PANS/PANDAS awareness important to you? and the Pandas physicians' network, accepted for publication 10/1/21.