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 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[1]. 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. Since he had a drug that might work, and patients, some who would die, had no other options, a placebo-controlled trial was not ethical.

Dr. Wolfgang Koehler, gave men with AMN the oil and found a significant decrease in disease progression relative to historic controls. Perhaps the most important experiment, was conducted on the Oil’s namesake, Lorenzo Odone. While every patient is different, Lorenzo surely lived longer on the Oil than he was supposed to. He was diagnosed with ALD at age 6 in 1984, experienced typical disease progression, then began treatment with the Oil. He continued to receive it until his death on May 30, 2008, at the age of 30. As the story goes, he was the oldest known survivor of child-onset ALD.

So, while there was no solid proof that the Oil was going to be helpful for anyone, there were indications, maybe better than anecdotal, that it could be beneficial.

Dr. Moser shared many stories over the years with me. I never visited Johns Hopkins without looking him up. If he was around, he always made time for me. I grew to cherish these meetings. It moved me to think that anyone was so dedicated to solving the mystery behind my disease. To hear him speak with such enthusiasm temporarily filled me with hope. Most of the rest of the time, so far as my disease, there was a significant feeling of emptiness.

In any case, no matter what we discussed, Dr. Moser always spoke with great hope about the holy grail: the once and for all study that would tell the story of the Oil: did it work?

Progress was slow, but moving ahead. The MRI and motion analysis tests were in place. Eventually, a plan was hatched: they would enroll 200 people; 100 women and 100 men, put them on a low-fat diet, make them exercise every day and take a daily dose of either Lorenzo’s Oil or placebo[2].

[1] Moser HW, Raymond RV, Lu SE, et al. Follow-up of 89 asymptomatic patients with adrenoleukodystrophy treated with lorenzo’s oil. Arch Neurol. 2005;62:1073-80

[2] https://clinicaltrials.gov/ct2/show/NCT00545597?term=lorenzo%27s+oil

Published by bradleygillespie

I am just a guy with a disease called adrenomyeloneuropathy. I want other guys with the disease to see the good parts of disability. Not the gloom. Not the doom. Make sense?

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