Hello, I was wondering if you are following some kind of special diet that helps to alleviate the symptoms or that can help in general to patients with AMN. And if so, what kind of improvements have you experienced with that special diet?
With regard to day-to-day habits and routines, I was wondering the same thing, if there is anything you do that helps you. Thank you.
There is a diet you can find online called the Mitochondrial diet which was developed by an MS patient who went from being in a wheelchair to riding bikes. It is very similar to the diet recommended by ALD nutritionist Hong Brereton at Johns Hopkins Hospital.
Many thanks for your feedback. Do you know the website address of the miithocondrial diet?
I have found the Wahl’s Protocol helpful. It’s similar to Paleo. In general the more vegetables I eat, water I drink, fruits and less red meat, sugar and breads ( in that order) the better I feel. Each morning I take 600mg of alpha-lipoic acid which also helps.
It’s tough though because it’s no miracle, but much better than if I don’t do these things.
I have been on a modified paleo diet for over two years. An increase in vegetables, the darker the color the better, meat (red and white), fish. Removing gluten, unrefined sugar, soy and dairy make a very big difference, as well as removing processed foods - almost everything that is sold in packages. Drinking more water. I prepare more of my own meals using paleo-compliant pantry items.
The differences for me following this diet are: improved digestion (gluten is the main culprit for me), keeping weight down (along with exercise), more energy because there are fewer toxins to keep me down. After a time, you can slowly add back certain foods to see what affect they have on you. Then, you will know which foods to stay away from.
I agree with Sdlizlem - I will lose out if I don't pay attention to what I eat.
Hi,
The problem we have is that very long chain fatty acids (VLCFAs) are essential in the human body and therefore our bodies manufacture them even if we don't eat them! The idea behind Lorenzo's oil was that it fooled the body into thinking it had sufficient VLCFA and would therefore stop making them. However, for reasons that we don't understand, that doesn't work.
There are studies of VLCFA abundance in foods and they tend to be most common in vegetable fats and oils rather than meat and dairy. This means things like chocolate have significant VLCFA but also wheat/grain products like breads and breakfast cereals. To try avoiding making my life too complex, I cook with butter and definitely not some of the higher VLCFA vegetable oils like peanut oil. I have an old paper which had VLCFA abundance in foods but no idea how to attach it here.
Otherwise I just try to keep active. The VLCFA are slowly destroying my nerves but so long as I use the muscles and nerves my body has an incentive to at least try to repair them. We are encouraged to be sedentary, and this is probably the worst thing we can do to ourselves as both our nerves and muscles waste away.
Good luck!
More controversial medication. I still don;t care if you are anti.
Increased production of urine from Addison's?
4-ap- anyone tried it?
Has anyone here tried acupuncture or a ketogenic diet to help with their symptoms? 
