I know we've discussed diet before on this forum, but I wanted to bring it up again. Is anyone on here eating a particular way? Anyone trying the Wahls Protocol diet?
I'm just curious as to how people with AMN are treating themselves. Obviously, we cannot alter the performance of our legs through diet but I did want to know how your feeling overall. I did a strict paleo type diet(which was pretty much the Wahls diet) for 3 months last year and I felt incredible, I had an extra pep in my step. This was also without adding exercise to my routine so I can't imagine how well I would've felt. Since then, I've gone back to drinking sodas and slacked off of eating clean foods and vegetables and the result of that has been expected... I'm tired, less motivated to do physical activities, a lot less agile and strong.
Your responses are greatly appreciated.
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StevenMincey
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My fiance is in the middle of reading Dr terry wahls book about the paleo diet. In the meantime, he eats pretty much the right stuff he should be eating like fish, vegetables and fruit and he drinks water a lot of the time instead of drinking tea. I really would like him to try the paleo diet, just to see if it makes a difference in himself. He also eats walnuts and almonds throughout the day. Also, we read somewhere that seaweed was supposed to be beneficial, I think you can purchase it at Holland and Barrett. We're going to look into it.
Yes, specifically the iodine that's in seaweed, which I believe helps the health of the myelin sheath. I really want to start a forum for men and women with AMN to gauge the effectiveness of certain foods to see if it has an impact on their overall well being.
I think that eating a healthy diet is very important, and I try to avoid all processed foods/products. However, I am skeptical of Dr. Wahl's claims that a Paleo diet cured her of MS, if that is indeed what she claims. Unfortunately, I do not think that there is a magic bullet for AMN, but I would love it if I were proven wrong. I think that the best that we can do is to stay strong in order to up our odds of surviving. A good diet and exercise is a big part of that.
Thank you for posting the question! I started following a modified paleo diet at the end of May. My digestive health has certainly improved. I am not missing the gluten and refined sugar though I do have natural sugars in my diet . It's October now and while I do feel better, I cannot say that I feel all the benefits I ought to feel. I do not have pep in my step, for example, especially without exercise. In fact, I still have stiffness, spasticity, spasms.
Having said that, I feel great when my muscles are warm from exercise. This lasts until I cool down (not long). I wonder if my brain function would be more muddled or if I would be depressed if I were not on this diet. I will not stop the diet to find out!
I'm going to pick up a copy of the Wahl's Protocol soon. Maybe I need to be on a stricter diet.
Ok so it seems I'm the only one here on the Wahls diet. I have been doing it for 5 months. Doing paleo, eating more veg etc is great but you need to follow the protocol to the letter. I've been on it for 4 months and it works!
"Obviously, we cannot alter the performance of our legs through diet" That's where you are wrong my friend!! My legs no longer shake at night. I can walk down stairs without holding on to the ramp and I haven't tried it seriously but I feel I can run again.
For me one major test is going to be next week when I get my MRI scan and whether the lesions are more or less apparent than at the last one.
In the meantime, I encourage everyone to go on the Wahls Diet but you need to buy the book and follow the protocol exactly.
I did buy the book, after reading one of your first posts, but haven't gotten into it yet (husband had back surgery). I actually think that I can blame my hesitance on him - he's not wanting to change any part of the way we eat.
So much for that, being in a wheelchair is not helping my situation, and I'm starting to gain weight. This would be for ME and I have to get that.
I’m a bit late to this forum but I’ve only just discovered the Terry Wahles Protocol. How are you now, 4 years on, are you still following the Wahles Protocol?
I agree...the Wahls diet is less of a diet and more of a prescription on how to use food as medicine to heal and nurture your body at the cellular level. I tried to incorporate some of the changes but with 2 young kids to cook for and a busy family schedule I fell back into crappy convenience foods. I will say that when I was eating more whole foods and juicing, I felt significantly better in every way. I am trying to get juicing and cutting out more of the processed foods for all of us and certainly plan to go all in on the Wahls Protocol when my kids are older and self sufficient. It certainly makes sense that we have to give our bodies the right fuel and tools to heal inflammation and damaged cell parts, and cut out harmful chemicals that make it worse. Just because the FDA says something is "safe" doesn't mean it is good, and may be quite damaging for folks with cellular damage.
The field of epigenetics is intriguing and it has been shown that, although we cannot change the genes we have, we have the ability to shift and alter which genes are dominant or latent through our lifestyle.
I would love to be a part of a group that continues updates on different lifestyle changes and diets to see what makes a difference. I am a medical professional by trade but I am learning more as a "patient" than I ever did in school...and I wish we had learned something, anything, about this! Thank you!
Primarily, i try to reduce my intake of VLCFAs. I know the body produces them when my intake is low, but there is no sense in adding to that. So that means avoiding peanut products, which is highest at 208 mg per 100 grams of food. Other oils that are high in VLCFA content are not common (Primrose oil - 76 mg, Wheat germ oil - 45, and Linseed oil - 31.4). Walnut oil was part of my diet years ago in the Kennedy Kreiger study, so i continue to use that (11mg), and coconunt oil is supposed to be a healthy option (5.9mg).
In addition, i eat lots of raw vegetables, whole grains, fruits, and avoid high-fat content meats and egg yolks. But that is part of a personal diet that goes along with an active lifestyle and has nothing to do with AMN.
I was diagnosed with AMN a few months ago but have had symptoms for well over a decade. After being told, my first question to the specialist was whether I could be doing anything different. The answer was no. As a result I haven't changed my diet, which was already reasonably balanced. I feel that my energy levels go up and down over time without any impact from diet, but it is possible that I am missing something.
As for the paleo diet, I am intrigued as to why a diet which cuts out refined carbohydrates would have an impact on AMN symptoms given that it is fat which is the problem? Plenty of people feel better on the paleo diet so I'd imagine there are non-AMN-related benefits.
There are not many good resources about foods low in VLCFAs. There was a study done in 1984, which lists some of them: ajcn.nutrition.org/content/...
It would be nice if we had more updated and complete information.
Very useful, thanks. Unfortunately, it looks like the key paragraph is:
"In contrast to phytanic acid dietary restriction in Refsum’s disease, restriction of VLCFA intake in ALD patients failed to alter plasma VLCFA levels. We believe that the explanation for the failure of dietary restriction to lower VLCFA levels in ALD, is that, unlike phytanic acid, the origin of VLCFA is both endogenous and exogenous."
Which means we might as well eat what we like, within reason, I guess.
I've been on a modified paleo diet and there are many foods on the list in the study that would not be compliant. The type of foods are not restricted, processed or not for example, only the amount. This study should be taken further to see if there is a direct impact from a cleaner, healthier diet such as the paleo diet, on AMN patients.
I am also confused as to the fat content, albeit healthy fat, in the paleo diet for AMN patients who have VLCFA. Could it be that the paleo diet is not meant for AMN patients, even though some of us do benefit from it?
In any case, I've received my copy of Wahl's Protocol and will be reading it this weekend!
Hello, I was wondering if any of you has carried on with the various diets and noticed any change. As there's so little about AMN/ALD and diet I, like many others, have made the Wahls/MS connection too. Because myelin is myelin and yet in one case it's disappearing due to a fault in the immune system (MS) , in the other - allegedly - goes because of the VLCFA nasty intervention... One of those long shots not worthy of me giving up my cakes?
I continue on a paleo-type diet. I prefer to cook my own meals (meat, vegetables, salad) but I will venture out with friends. I stay away from processed foods, which is the real killer. There are just too many chemicals in such foods which affects me negatively. Processed foods also means anything made to be low fat. I don't prescribe to avoiding fats, especially because I am more aware of what I eat and how to prepare my meals. I exercise (training in a boxing gym) but this together with the diet does not mean I don't have symptoms. However, overall, if I were not eating cleaner and healthier and exercising, then yes I would have more problems getting through my regular work day.
I'm also interested in hearing from others about their progress.
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