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 analysis gamut and a series of cognitive function tests to assess my hand-eye coordination and memory. There was even one experiment where they hooked electrodes to my scalp, then shocked my toe. The idea was to see how fast the electricity could traverse the length of my body. The better the nerve, the faster the electrons would move, I suppose. I expect that my nerves were not so good- the technician was unable to detect anything at the scalp level.

Despite the faulty nerves, I was in good enough shape to enroll. I had no idea if I had drawn the Ace of Spades and was assigned the active treatment, Lorenzo’s Oil, or if I would spend the next 4 years drinking placebo. Either way, I was ecstatic to be doing something, anything. It was quite great.

I went home and ate as much fat as I could get my hands on, knowing that within a few days, the study would begin, and my diet would need to be turned on its head. My original dose allowed me to consume something like 26 grams of fat per day, besides that from the oil- Not too much, when you realize that a 2-ounce Snickers bar will get you 14 grams[1]! Before long my first shipment of oil arrived. I painstakingly changed my diet, did what I could with the exercise program and started swigging the oil. It was pretty much like motor oil, with a tinge of peppermint. For whatever reason, it was the peppermint that was gnarly. Once at the movies, I caught a sniff of someone’s Starlight Mint, and nearly puked.

By and by, I adapted to my new existence. For all I knew, this could be a lifetime commitment, or so I hoped. It was great, actually. I was finally doing something that I knew could change my life.

After a month or so on the study, I received an urgent call. I was told to immediately quit the oil because I was pretty low on platelets (thrombocytopenic)The . What I did know was that the most common side effect of Lorenzo’s Oil was thrombocytopenia. So, this so-called adverse event was quite a wonderful thing- I was now certain that I had been randomized to the active, Lorenzo’s Oil, treatment group.

I was given a rest for a month, in order to get my platelets back on track, then re-started at a lower dose level. The platelets were happy with that. I was pretty much on cruise control, taking the oil, watching my diet, exercising (though not enough, according to Occupational Therapist Kathy Zackowski) and going to visit Kennedy-Krieger annually to check the progress of things. It was easy, and I was sure that I had turned the corner.

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[1] https://www.nutritionvalue.org/SNICKERS_Bar_91715100_nutritional_value.html