Dr. Moser had published an article[1] that suggested that if pre-symptomatic boys received Lorenzo’s Oil, they had a reduced chance of developing the bad stuff associated with adrenoleukodystrophy. Problem: this stuff was hard to come by, in the U.S., anyway. I wondered, could this deficiency actually be a novel angle? Expectant and new parents, withContinue reading “Working that Oil”
Tag Archives: Lorenzo's Oil
Getting to Know Mr. Augusto
I guess I never knew quite what it cost. There were a few extras: wire fees, shipping charges, U.S. import duties and the like. Besides, I bought the stuff in Euros, and I always get confused by exchange rates. It seems that in December, 2009, it came to around $175 a bottle, which was enoughContinue reading “Getting to Know Mr. Augusto”
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”
Walking the Rails 