Purple Canaries

Joyce Gould with Jill Gould

The eye sees only what the mind can comprehend. – Henri Bergston

I know I’m not alone in thinking it highly inappropriate that the apf coalesced around an AIP index case who did not produce holy grail darkened urine “naturally” and then joined forces with a group to set the bar for diagnosing ALL acute porphyrias based on excretion levels of of U-PBG (which, as it turns out, is a “moving bar” because the level to secure AIP diagnosis has increased during the organization’s 35+ year history–as many can attest). A look at the numbers I reported on last week indicates that the majority of acute porph cases produced heightened U-PBG “naturally” during attack; only a handful made it into the “club” based on the administration of unsafe meds that prompted the appearance of the precious purplish urine. Refer to my FFFF paper posted on www.purplecanaries.com blog for more of this “nonsense.”

1 comment

  1. Barbara Bradbury

    Urine can turn dark without the unsafe drugs, but as no regular testing to speak of, is done in Australia and is largely unknown in rural areas, it would be a good idea if this old fashioned method was still in vogue. Unfortunately “evidence based medicine/science has become the fashion and all is in the hands of the “experts”, who are requred to test over and over again, that is at each episode, for treatment to be instigated, even for patients with diagnoses already. I keep seeing papers, where the family history is considered equally important as the the urine testing. And even that is insufficient for diagnosis of other acute porphyrias.

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