Purple Canaries

Joyce Gould with Jill Gould

DAY 6 – 2021 NATIONAL PORPHYRIA AWARENESS WEEK: An AIP PATIENT ODYSSEY

Please note the author/patient posted his odyssey on a FB forum a couple of years ago. He agreed to participate in this Purple Canary NPAW compendium in hopes that the information and his experience might help other patients in managing their AIP.

My first AIP attack occurred in late summer 1956 at age nine. To clear up a bout of tonsillitis before my tonsillectomy I was given a sulfa drug. Almost immediately it hit like a hammer blow to the back of my head. My central nervous system lit up like an incandescent lightbulb just before it burns out. Then everything went dark. I collapsed.

I was likely given more porphryinogenic drugs in the hospital. The next several months my body ached all over. My visual world was back and white with shades of grey, my inner space dark and painful. I was withdrawn, depressed, miserable. The attack gradually dissipated.

Over the next sixteen years, I had numerous much less dramatic attacks. Hunger pangs would turn my belly on fire. Breathing malathion overspray triggered intense headaches. I would frequently feel disconnected from the world around me, just barely able to maintain a grasp on reality. I “whited out” once. I collapsed and briefly lost all muscular control. My inner and outer visual field become one uniform white light, eyes open or closed. I recovered quickly.

Then the big one hit. My descent into AIP-induced dementia began at age 26 with two rounds of tetracycline in early autumn 1973. My first system was an awareness of the floor of my being was about to collapse and I was powerless to stop it. Soon I lay paralyzed on my bed. My mind was clear but I could not form a thought, let alone act on it. My mental faculties were as paralyzed as my body. The need to eat or go to the bathroom would temporarily end the paralysis. I would get up, walk to the diner a half mile away eat, then walk back to the house only to collapse again.

After several days the periods of paralysis were replaced by exhaustion, fogged mind, visual disturbances and excruciating headaches. In a moment of clarity I realized how deteriorated my condition had become and decided I’d best fly home to my father in Atlanta. I sought refuge. A fellow graduate student saw me onto the plane.

Once home, my dementia deepened. I was a zombie for four or five months. My body ached like a really bad case of the flu. Thinking and normal activities were impossible. I spent most of the day staring blankly out the living room window. Dad cooked for me. I ate, bathed, slept and stared out the window. I wasn’t capable of anything else.

At the time, my father was a research biochemist. He worked at a highly respected university medical lab where he learned that a colleague was studying the use of zinc sulfate to treat symptoms like mine. Dad brought some home and I ingested just a tiny amount. It instantly relieved my symptoms. The visual disturbances and body aches stopped. My mind cleared for the first time in months. I became functional again. During the next few months I had numerous small to moderate outbreaks of symptoms but promptly taking a small amount of zinc sulfate (10-15 mg) ended them quickly, in a few minutes at most. My AIP remained undiagnosed for two more years, but I began to lead a more normal life.

In May 1976 I returned home late one night and found medical texts and journals piled atop one another on the breakfast bar, each open to an article on AIP. A note from Dad said, “Son, we have this!” I made coffee and read for hours.

The next day Dad explained he’d made his discovery by accident. The hospital had asked him to help diagnose a family apparently suffering from a hereditary disorder. Dad tested the father for AIP, using his own urine as a control. He added a few drops of 10% Ehrlich reagent to each test tube. The wrong one turned red. Dad was AIP positive! Since I had exhibited extreme symptoms of AIP he concluded I was too. He brought home a rack of test tubes and an eye dropper bottle of Ehrlich reagent. I tested positive. I used the test tubes and Ehrlich reagent to test my urine frequently, during and after attacks. Dad identified the delta aminolevulinic acid (d-ALA) and porphobilinogen (PBG) in his urine by electrophoresis and showed me the results. Two of the articles Dad brought home reported using zinc sulfate to treat AIP, confirming my experience.

I have used zinc sulfate for the last 46 years to control my AIP symptoms, both the physical and the neuropsychiatric. I carry zinc sulfate with me at all times and have it within easy reach at my desk. I take it the moment I sense an attack coming on or when I find myself spiraling downward either emotionally or with physical symptoms of weakness or pain.

The articles my Dad brought home informed me of the importance of avoiding triggers. That has become my primary goal. I use zinc sulfate only when that strategy fails, for instance when I allow myself to become hungry or react to some food contaminated with pesticides or breathe an airborne chemical that triggers and attack.

I hope what I have written here will be of assistance to others.

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