AMN and diet

[StevenMincey]

Has anyone ever heard of the Dr. Terry Wahls? She claims to have reversed her MS symptoms with a slightly altered Paleo diet and physical therapy. I'm halfway through her book and it's very interesting(especially since medical science has no real treatment of AMN). My wife and I are trying to slowly alter our diets to eventually achieve the nutrition plan criteria of this diet. I just wanted to share this information with people also diagnosed with ALD/AMN. My name is Steven. I'm 28 years old and I was diagnosed with ALD when I was 7. I have noticed a decline in the past 2 years in my walking capabilities since I stopped lifting weights and exercising.

[Nicolas]

That's really good! I think that Dr Wahls is onto something. I don't follow her exact diet but I eat mostly Paleo anyway and to be honest I have almost no symptoms anymore at the moment, but I also think it's because I follow a strict weight lifting and stretching regimen.

Please keep us updated regularly if you can, I'd really like to know how you get on with it and I'm pretty sure you will see improvements.

Also any reason why you don't lift anymore?

[StevenMincey in reply to Nicolas]

A series of positive life changes including marriage and we had a child. I still do push ups and squats at my house from time to time but nothing compared to my previous regiment.

[tieaknot]

I read her most recent book and am intrigued. (I am a female carrier and I also have a rare autoimmune disease and a more common one too in addition to AMN). I am trying to modify my diet but it is tough when I have a family of carb-addicts to cook for too! Very interesting stuff though!

[StevenMincey in reply to tieaknot]

I agree, maintaining a diet(specifically an expensive one) is probably the most difficult thing in a world surrounded by convenient and cheap foods. My wife prepares all of our meals and it is daunting not only on our budget but our very little free time. However, I don't need to focus on how difficult this is because I spent about a month or two last year doing this and I felt fantastic during that time. I had sustained energy throughout the day and a little extra "spring in my step".

[Catherine62]

Hi Steven,

I'm in Charlotte, NC. I have been on the wahls-inspired diet for about eight months now. No gluten, dairy, sugar (where I know it is), or soy, with a high intake of greens, vegetables, and fruit, fish/salmon, chicken, and some beef. I still eat rice, quinoa, and potatoes. I also eat more fats (in the form of avocados, olive oil, nuts, etc.) than I have in years.

This has ben very beneficial for me. I am pretty symptomatic for a female. Since changing my diet I have significantly less stiffness, discomfort, and swelling and greatly improved energy with less fatigue. I was able to go off of all medications, like baclofen. I still have my walking issues but I definitely get around better and was able to reintroduce weight lifting and cardio.

I have been on this diet under the guidance of my physiatrist and the nutritionist she works with. They are both unsure about the true wahls level one diet. That level seeks to keep the body in a Ketogenic state , where the brain then burns fat exclusively for energy. Their hesitancy with this is two fold: first, I've lost over 15 pounds on this diet, and I didn't have any to lose. I'm 5'5 and about 105 pounds. There is certainly more weight loss associated with ketosis. Second, it's also at this level where the differences between MS and AMN/ALD must be considered. There just isn't any research and even anecdotal evidence about the impact of exclusively burning fat as energy with a condition where long chain fatty acids are not broken down. In short, my doctors thought I was getting a good benefit with what I was doing, and the risks were too high.

That said, I am still incredibly intrigued by this concept and wonder what benefits might await. If you decide to pursue level one, please, please document your experiences and keep us all updated.

I wish you the best, Catherine

[StevenMincey in reply to Catherine62]

That is so wonderful to hear, Catherine. Testimonies like this are so great for people stricken with disease. I fully believe that preventative measures such as diet and exercise will result in positive results, in one form or another, for people like us. My brother was diagnosed with AMN in his early twenties and had to use the assistance of a cane by 22. He previously had no health issues. I was born with non stop health issues due to ALD and my doctor was very surprised that I didn't die from going so long untreated... until I was diagnosed at age 7. From my teenage years well in to my 20's I've been pretty healthy and I have to believe it was due to my hobby of lifting weights. I intend on progressing in my nutrition intake and making an effort at getting back in to the gym. I believe this is the key to my longevity.

[Nicolas in reply to StevenMincey]

I agree, I think you need to get back to lifting weights as soon as you can. It's done wonders for me, one-hour workout, one day on, and one day off, and 10 minutes of stretching after each workout. Bit painful at times but totally worth it.

[bluejadedwho]

I just started reading the wahls protocol. I'm doing the paleo plus! Day 2.

I have had AMN for 10 years.

I'm very confident that this will work. I adopted a vegan diet years ago, thinking this made sense what with the original low-fat diet recommendation. I progressively got much worse.

As a holistic nutritionist myself, it makes a lot of sense

As mentioned previously, I also have the concern about the high fat in a condition that cannot break down VLCFA. Perhaps this is OK as primarily the types of fats in this diet are medium chain.

I will contact Dr. Wahls for some guidance and report. Be well everyone.

[StevenMincey in reply to bluejadedwho]

That's fantastic to hear! I thought this diet would translate well to people with AMN . I have yet to start it 100%, so I'm afraid my results would be skewed. I will, however, start a journal once I'm able to follow it precisely.

[bluejadedwho]

Unfortunately, one cannot contact her for advice.

BUT! The following information I found from a response to a website about the Wahl's protocol. It is exactly what I've been searching for, for sometime now!:

It’s not just the mitochondria, the brain as a structure is 60 to 70% fat, the reversal comes from correcting the body’s fatty acid metabolism by elimination from the diet ALL adulterated artificial, polyunsaturated & trans fats as found in liquid vegetable oils, margarines, dressings & virtually ALL processed “foods” and supplying the body with physiologically correct whole natural saturated fats as basic, raw building material for proper axon, neuron & meyelin & cell & cellular membrane structure.

Adrenoleukodystrophy as known from the Lorenzo’s Oil story & movie is a disregulation of the body & brain’s fat metabolism which causes long & very long chain fatty acids to accumulate in the brain in a manner similar to beta amyloid plaque deposition in the brain which causes Alzheimer’s, both of which can be reversed by intake of short & medium chain fatty acids in coconut oil which emulsifies, removes & replaces the long chain fats from the brain’s neuron structures.

The time interval required for restoration & normalization of the body’s fat metabolism depends on the body’s cellular replacement schedule which varies between the body’s organs & structures, and also the dietary intake level of the building materials the body needs for cellular replacement, the less good saturated fats, fat soluable vitamins & minerals eaten the longer the process will take.

In my opinion the major primary cause of MS, fibromyalgia, chronic fatigue & most auto immune syndromes is low intake & avoidance of the good, whole, fresh & natural saturated fats & cholesterols the body requires for basic body & organ structure and metabolic processes. Proof of that is found in the fact that many if not most of these conditions can be reversed & resolved by physiologically correct cellular nutrition including, most importantly, intake of the critically essential fatty acids most people shun.

Women, vegans, vegetarians & most FDA & USDA brainwashed people with those conditions are commonly known to avoid most or all use of the natural fats, & many of the people that do include a bit of dietary fats favor artificial & excessive intake levels of the adulterated omega-6 liquid grocery store vegetable oils & margarine that completely block, shut down and totally derange the body’s fat, hormone & enzyme production & metabolism and do not support biological life & processes.

[StevenMincey in reply to bluejadedwho]

That's very interesting, do you know who made that statement?

[bluejadedwho in reply to StevenMincey]

Unfortunately, no. However, I have followed them on Twitter and hope to connect.

It makes a lot of sense though doesn't it? It still scares me a bit, as this is the exact opposite of what the "experts" advised in the past.

[StevenMincey]

I think that our self-experimentation will be pretty ground breaking if it shows results(and from these responses it sounds like it has), but we need multiple people with AMN doing it to compare apples to apples.

[Loribeth82]

I can't tell you how excited I am to find this conversation!! Exactly the dialogue I've been looking for.

Bluejadedwho, if you do find who made that statement you cited above, I'd love to know, who! Because that is exactly where my head is at with all of this, too...

I was just diagnosed with AMN a month ago. I am a 32-year-old female, and my symptoms of ataxia, neuropathy and leg weakness have progressed over the past decade. With no clear diagnosis, I've experimented extensively with my diet to look for solutions for my symptoms. For the past 18 months I have been on a paleo diet, and have tried the paleo autoimmune protocol and GAPS. I've had some encouraging results - so when I got the AMN diagnosis, it was really discouraging to read over and over that the medical community's consensus seems to be that diet doesn't matter! I strongly believe it does.

My motivation has multiplied now, as we have learned that our 2-year-old son has ALD, too, through a blood test. So we're trying to learn as much as we can, as fast as we can, to put together a diet plan for him that we're comfortable with, and trying to figure out whether we want to pursue Lorenzo's oil as part of his care plan. Would love to hear your thoughts!

[bluejadedwho]

Thanks for your reply! This is so great that you are following this diet! I have never felt better!

I don't have much faith anymore in Lorenzo's Oil. Also, I wouldn't be able to get it anyway as the medical community will not release it unless one is part of their studies. Another way for them to profit on us!

It is interesting though that this diet is the exact opposite of what the "experts" recommended. (Low fat)

[StevenMincey]

I agree, please keep up with the diet! Along with you guys, I believe nutrition is going to be a key element in our salvation. I was on a low fat diet and received Lorenzo's Oil when I was a child but the results showed little to no improvement based on what my doctor told me. And to your point, bluejadedwho, a lot of the experts do not recommend it. I think this is because of the lack of evidence and scientific studies. Sure, any doctor will tell you that you should eat "healthy", but I'm not sure if they truly realize the potential of focusing on specific nutrients and avoiding others.

A quick update, I started going back to the gym today and intend on starting a routine. Also, I'm hoping that my new neurologist is enthusiastic about my diet choices.

[ndjsx]

I'm so glad i came across this post. I showed my partner who has amn and he immediately purchased it and is in the middle of reading it. I didn't realise it was such a thick book but more information the better I say. Glad we can all help each other with knowledge and support.

Take care all.

Nicole

[julie_]

Thank you, Steven, for posting this and everyone who has responded. I have never been on a diet before but the paleo one does seem to make sense. I am not strictly on this plan, but I am now much more aware of what I've been eating and it boggles the mind! I thought I was healthy with salads, etc but I was also having my fair share of processed foods!

It has only been a week for me, but I feel positive with the direction I'm taking!

[tieaknot]

Hi! Just wondering if anyone has any updates as to how they are doing and feeling while following the Wahls protocol or other diet? I have been feeling terrible and not taking care of myself nutritionally or physically lately and came back to this thread for some motivation to again make some positive changes and thought I would ask how everyone is feeling. Medications have only made me feel worse so I am desperate for some pain relief, energy, and mental and physical improvements...but it is so hard to get motivated to make such big changes when you feel crummy 😕. Thanks!

[julie_ in reply to tieaknot]

Now it is a bit more than a month being "paleo minded." I can tell you my digestive system is behaving so well! After I eat, there is no bloat or discomfort. I have toned more (more definition in my abs, no my abs are not flat!) and my appearance is better. I was looking tired before.

I am not following any strict plan, but I do cook my own meals more and use oils recommended in my cookbook. I really like cooking with coconut and avocado oils. I have eliminated a lot of refined sugar products and when I do try to have a little, I get a powerful sugar rush and it has an immediate bad reaction in my stomach. I only eat a little rice and noodles rarely, which does create bloat that I don't care for. I will also have the occasional croissant!

I'd also love to hear from others to see if there are any tips they'd like to share about the paleo diet!

[monmon]

Hello! I know this is an old post but I was wondering if any of you has updates on your diet experiments? I’ve never considered a diet/protocol before, but as my symptoms are gaining speed... Thank you and I hope you’re doing well.

[aaa291]

Hi Everyone,

Just came across this post and wondering if anyone can share his experience with this diet,

I am 48 years old male with AMN

Thanks

[aaa291]

Hi Steven,Hope you are doing well these days,

It’s been 6 years since you posted about the Paleo Diet, I was wandering if it helped you or you noticed any improvement in your health, I was actually been recommended by a chiropractor/neurologist to do this diet. Can you share some experience with us (6 years after) please?

Thanks in advance