Derailed

The plan was a 4-year study, but 3.5 years in, I got a letter ordering me to stop taking the oil immediately, no explanation. I later learned that the IRB shut it down because enrolment was slow, inadequate patient retention and a safety issue. Turns out the safety thing was in a placebo patient, butContinue reading “Derailed”

The Trial Begins!

In April, 2005, I was the fourth to be selected for the Lorenzo’s Oil AMN study at the Kennedy-Krieger Institute. I eagerly traveled to Baltimore and underwent all of the pre-study poking and prodding. My blood was drawn, I got an MRI to assess the extent of demyelination in my neck, the whole motion analysisContinue reading “The Trial Begins!”

Lorenzo’s Oil

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 gaveContinue reading “Lorenzo’s Oil”