While many of you (well, maybe some of the older folks) have heard about Lorenzo’s Oil, in this post, I describe the beginnings of the large placebo-controlled Lorenzo’s Oil study that I participated in at the Kennedy-Krieger Institute. Please, have a look!
Lorenzo’s Oil, a 4:1 mix of oleic erucic acid is extracted from rapeseed and olive oil. This stuff normalized the accumulation of VLCFA in the brain. It seemed like a straight forward enough solution; it should counter the disease and slow its progression.
The Oil had been studied for decades. In the beginning, they gave it to everyone, kids and adults, alike. Dr. Moser published data suggesting that if you gave it to boys before they became symptomatic, they had a better chance of remaining symptom free. This, paper drew howls of criticism: he gave it to most anyone and there was no placebo-control. The analysis was based on a comparison to historic controls.
He had a problem. While some kids would grow up like me, relatively unscathed, others would take Zach’s path and not do so well. There was no way to know. This was the issue…
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