Diet

[bluejadedwho]

If it is has now been established that limiting dietary intake of VLCFAs’ is not an effective way to aid in preventing disease progression, as they are still made within the body, why then did Lorenzo Oil help for some in ALD?

[Equinney]

Thank you for sharing. And it is possible there are some gene variants that it could benefit I guess. We have so many differences in ours.

[AussieBob]

It didn’t help as it doesn’t cross the blood brain barrier. It just marches on. No doubt there could be some benefit to other organs within the body but it does not have any affect on the brain

[monkeybus]

From the website, Science Based Medicine

sciencebasedmedicine.org/lo...

If Lorenzo’s oil is given to asymptomatic boys with the X-ALD gene then their chance of going on to become symptomatic is significantly reduced, by about half.

Lorenzo’s oil is therefore currently recommended for preventive therapy in asymptomatic boys with X-ALD.

The movie makes LO look like a panacea. I wish it was that simple.

If I'd have known I had AMN, before my symptoms kicked in, I'd have tried LO on for size.

I'll add, as well. Despite starring Susan Sarandon, Nick Nolte and Peter Usinov, it's not even a decent film.

[COwithAMN Administrator AMN EASIER Volunteer]

Good explanations here - thanks.

This web site is also good, and seems to be the repository for all the >800 current mutations of AMN: adrenoleukodystrophy.info/

There is still so much that is not understood about how our nervous systems work, and why some people escape some symptoms while others do. I'm a case in point - no apparent adrenal deficiency despite having most of the eventual symptoms of AMN.

On L.Oil, when I was diagnosed in the late '80s, the medical orthodoxy was that eliminating all fats from the diet was part of the approach. So, as well as going on L.Oil, I was given advice from a dietician. As well as reducing normal fat intake, I was also advised to peel all fruit. This was reasonable for apples, but not so easy for strawberries. Apparently the skin of fruit contains higher levels of fat molecule.

As well as taking L.Oil as a medicine, the treatment also required the sole use of glycerol trioleate (GTO) oil for cooking. Out went olive oil, butter and sunflower oil. Despite this, my wife and I devised a way of cooking that we maintained for the 5 years or so that I was on the regimen. It came to an end when my consultant told me that there was no evidence that the treatment would slow the progress, and that quality of life was probably more important.

Ah well.

Speaking of how little we understand the nervous system, I came across this crowdfunding appeal today from a young woman for a wheelchair. She has a neurological disease I had never heard of - dysautonomia. It sounds bad.

gofundme.com/f/Help-Laura-G...

Be well, all.

Chris

[bluejadedwho]

So really, just eat as healthy as you can, and not obsess over limiting fat; well bad fat yes, but good fats are necessary as myelin is fat.