Lorenzo's Oil

[monkeybus]

Hello folks.

Does anyone here actually take Lorenzo's Oil?

My neurologist (who only prescribes an extremely limited set of drugs) says the Very Long Chain Fatty Acids are just a marker of the disease and lowering them makes no difference at all.

I've found a source for it, but does anybody here actually take it.

Do we have any kind of consensus here?

[COwithAMN Administrator AMN EASIER Volunteer]

Your neurologist is correct, so far as my own understanding of the disease goes.

There used to be a view that it was the build up of VLCFAs that was causing AMN. Now there is more of a consensus that the VLCFA level is indeed a marker.

Taking Lorenzo's Oil will reduce VLCFAs as measured in a normal blood test. The trouble is, that this does not halt the progress of the disease; the science is pretty sure about this as It was one of the findings from a multi-year analysis of AMN men taking Lorenzo's Oil. As well, you have to do more than just take the oil; you have to commit to cooking with glycerol trioleate (one of the ingredients of L. Oil) and going on a very low fat diet. This is a very hard regimen to follow.

The final problem with taking Lorenzo's Oil is to do with the blood-brain barrier. This is the body's natural protective mechnism that makes sure that unwanted chemicals that might be in the blood don't enter the central nervous system, I.e. the brain and spinal column and nervous system. So, although a normal blood test will say that VLCFAs have gone down, this does not enter the blood in the CNS.

So, the bottom line is that Lorenzo's Oil does not work for adults with AMN. It seems to have some benefit if given to pre-symptomatic boys, but even then, only in a small percentage of cases e.g. perhaps around 20%.

My own experience bears all this out. When I was diagnosed in the late '80s I went on Lorenzo's Oil for about 5 years. I cooked with glycerol trioleate and my wife joined me on the diet, bless her. We lost some spare flab! But eventually my consultant suggested that I should stop because it would not help. And, as he said, quality of life is also important.

I know of one or two long-term AMN-ers who have stuck with Lorenzo's Oil, but this has made no difference to them over the years. They have declined more or less at the same pace as the rest of us.

With best wishes

Chris

[monkeybus in reply to COwithAMN]

Thanks a lot, Chris.

That's that, then.

I'll stick with plan A of industrial strength doses of 4-AP and Modafinil.

[lightnin77 in reply to COwithAMN]

Here in the states they did a research trial with women with AMN . I was in that study and even though double blinded it ended up I was on Lorenzo's Oil. The only effect it had on me was that it lowered most of my other levels. My red cells, white cells ,Iron and numerous other levels dropped. To say the least they took me off the oil. I too was on the diet and cooking correctly. The study was eventually closed due to the same problems for the other participants in various extremes. Now my cousin is on Lorenzo's oil and he has adult onset. He is doing really well and the progression has slowed.

[COwithAMN Administrator AMN EASIER Volunteer in reply to lightnin77]

Thanks lightnin77 for pointing out the side effects on Lorenzo's Oil. I had forgotten all about them.

For new AMN-ers reading this, these effects are non- trivial. The main effect is that the blood's ability to clot is reduced and this can potentially be dangerous. Any slight bleed internally or externally will not heal quite so easily, so doctors will be concerned about this.

Another good reason to avoid Lorenzo's Oil.

Cheers

Chris

[florida59]

Hi I spent two and half years on a trial using Lor. oil. I didn't find it any good

[vgrimaldi]

I was on Lorenzo's Oil from 1987 until 1991. I go worse when I used the oil and I found no benefits. Just eat healthy.