“So, there you have it, drink Lorenzo’s Oil and grow myelin!”

Although the study was halted, I still needed to come in for my final study appointment. Compared to my previous visits, my mood was not great. Still, I tried to be optimistic. I arrived armed with questions: “why was the study stopped early”, and with a bit of desperation, “were they able to salvage any useful data?” I met with Dr. Gerald Raymond. First, he confessed that at the onset of the study he was less optimistic than Dr. Moser. I found that to be a strange introduction, it got my attention.

Then, he warned me that there was no way that he could tell me that Lorenzo’s Oil is an effective treatment. Even more weirdness, why would he give that sort of qualifying statement?

Dr Raymond carefully stated that “an initial look at the imaging data looked promising.” By now, I was super intrigued. He sketched out a figure illustrating how they hypothesized that the MRI data might look. His picture showed the depletion of AMN myelin over time. A second line depicted how myelin could go for Lorenzo’s Oil treated patients- less over time, but not so much as in the untreated patients. So far, it made good sense, but nothing that I did not already know.

What came next was a bit flabbergasting. The curve for Oil treated patients sloped upwards! This was quite fabulous: Lorenzo’s Oil-treated patients actually had increased levels of myelin. Of course, these data were very raw, and there was no way of knowing if the new stuff was active, but the way I saw it, more myelin (active or not), was good. My mind, optimistic, as always, leaped ahead: “So, there you have it, drink Lorenzo’s Oil and grow myelin!”

Dr. Moser had achieved his dream, validating his suspicions, Dr. Koehler’s work and Lorenzo’s unlikely story. I have no recollection of the rest of my trip, I had moved on to the next phase. It was clear that I was going to be on the Oil for as long as it took to get my legs working properly. I had not yet started considering the task of getting the Oil. That could wait. I needed to bask in the sunshine of these new findings.

When I awoke, the day after my wonderful discovery, I thought for a bit. About how little I knew. While in the study, it was easy, the pharmacy kept track of when I needed oil, they shipped it, and it arrived on my doorstep. No problem. I would learn that there were a few obstacles to me replicating their well-established supply chain.

Heck, I did not even know who made the stuff.

Things had changed, technology-wise since I began researching AMN. It took only a few minutes to learn that it was made by SHS Nutrition in the Netherlands and distributed worldwide by Nutricia.

Well. That was the easy part. It took only a bit longer to realize that because Lorenzo’s Oil is not approved in the US, it was not going to be as simple as mailing in a prescription to Caremark and waiting for its arrival.

No, it would not be much like that at all.

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?

2 thoughts on ““So, there you have it, drink Lorenzo’s Oil and grow myelin!”

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: