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Ketosis and Charcot Marie Tooth

Ketosis - Avocado

Ketosis is the metabolic state in which the body burns fat as its primary source of fuel. Fat as a fuel is burned more efficiently by the body than carbs. Fat for Fuel by Dr. Josheph Mercola goes into detail about the benefits of fat and how diet can heal the body’s mitochondria. Does this mean ketosis could have a positive impact on Charcot Marie Tooth? This is the question I posed to myself before starting the ketogenic diet six months ago. I quickly learned that a healthy diet and ketosis do indeed have a positive impact on life with CMT. Ketosis targeted several symptoms of CMT.

Fatigue

Fatigue is a notorious symptom of Charcot Marie Tooth. Patients with CMT report being tired most of the time. I was no exception. Before following a ketogenic diet, I felt tired throughout the entire day, everyday. There were no exceptions, and things like caffeine only worked for a small amount of time before I was tired again. This haunting fatigue finally went away when I entered ketosis, and my energy only improved as my body became fat adapted.

The first day I entered ketosis, there was a noticeable difference in my energy. I woke up and didn’t feel groggy like I normally did. I got to work around the house the moment I woke up instead of dragging my feet. It was as if I was suddenly a morning person. It had to be ketosis. I tested my blood ketone level, and sure enough, I was in ketosis. From that day on, my energy improved as my body adjusted to its new energy source: fat.

Pain

Surprisingly, some of my pain was taken care of. I don’t want to get anyone’s hopes up by making them think all of my pain was taken care of with ketosis. I can only assume that some of my pain was caused by inflammation throughout my body, because I noticed a significant amount of overall pain had gone away after a few days of being in ketosis. Carbs are known to cause inflammation in the body.

Muscle Weakness

Muscle weakness is common in patients with Charcot Marie Tooth. This feeling of weakness isn’t just normal muscle weakness. It’s a specific feeling where muscles feel much weaker than they should. One day I could feel strong just like I’m a normal person without CMT, then the next my muscles feel half as strong or even worse. From my experience, being in ketosis has made this feeling of weakness scarce. I’m able to feel consistent strength for longer periods of time. Instead of only being able to do five repetitions on my bad days, I’m able to do a full set of 10 repetitions while I’m in ketosis, regardless of a bad or good day.

Muscle Wasting and Atrophy

Due to not feeling weakness as often and being able to exercise much more, I can only assume that my muscle wasting and atrophy have slowed. I’m not trying to write, nor am I implying that ketosis will stop muscle wasting and atrophy, or that ketosis even has a direct impact. I’m merely saying that because ketosis provides better energy and strength, I’m able to exercise more often and for longer lengths of time. I believe this means I will be building and retaining muscle longer than I would have if I hadn’t stayed in ketosis.

Poor Tolerance to Cold Temperatures

In my experience, my poor tolerance to cold temperatures was due to poor circulation. Due to low energy and inactivity, my body had grown accustomed to moving blood at a slow rate. I had a low resting heart rate, around 50 bpm or lower, and I was almost always cold. Having a resting heart rate of 50 bpm isn’t necessarily bad, but it’s not really a good sign when you aren’t an athlete.

Once I entered ketosis and became much more active in life, my poor tolerance to cold temperatures went away within a few weeks. My resting heart rate is still around the same, but my heart beats with more strength and moves more blood. My extremities no longer turn into ice blocks in the night. Both my hands and feet stay warm throughout the night. I thank ketosis for the energy it delivers in order to achieve good blood circulation.

Summary

As you can see, ketosis can directly and indirectly target symptoms of Charcot Marie Tooth. Fat burns more efficiently than carbohydrates. It’s also readily available throughout the body, so you have a steady energy source throughout the day. This takes care of fatigue. Without fatigue, I’m able to exercise more and be active throughout the entire day. This address muscle weakness, wasting, and atrophy. Stronger muscles and a stronger heart means better circulation throughout the body. This means ketosis indirectly helps keep me warm in cold temperatures.

I’m quite satisfied with my new lifestyle. I don’t see myself switching from the ketogenic diet in the foreseeable future. There are just too many health benefits for someone like me.

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Bulletproof Coffee for Thirty Days and Beyond

GMM Bulletproof Coffee

At first glance, Bulletproof Coffee (BPC) didn’t seem groundbreaking to me. I was skeptical to say the least. Fat and caffeine? Surely it was just a placebo effect. I was already feeling energy gains from ketosis. Could I really boost the benefits of ketosis with a BPC every morning? I did what I always do and started down a long road of research.

History of Caffeine and Fat

Turns out that caffeine mixed with fat is nothing new. Humans in 9th Century Ethiopia would mix coffee beans with animal fat before coffee was even used as a drink. The mixture was given to warriors before battle to boost energy. Tibetan Butter Tea, or Yak Butter Tea, is very similar to Bulletproof Coffee and has been consumed for centuries by Tibetans to increase their energy in the high altitudes. The more I looked into the history, the more it seemed that humans discovered the benefits of caffeine and fat a long time ago. Somehow the Western world had lost or never adopted this tradition.

Standard Bulletproof Coffee Recipe

  • 8 oz Coffee
  • 1 tbsp Grass-Fed Butter
  • 1 tsp – 1 tbsp MCT Oil or Coconut Oil

This is the standard recipe for most Bulletproof Coffee lovers. I personally add protein powder to my BPC.

My Bulletproof Coffee Recipe

When I feel like having a sweet coffee, I use the Isopure Cookies & Cream Protein Powder. It makes the Bulletproof Coffee taste like hot chocolate! I use Bulletproof Brain Octane MCT Oil and Collagen Protein Powder simply because of their proven quality.

First Week

There were a few things I noticed when I drank my first Bulletproof Coffee. I immediately felt energetic, and more so than if I had just drank a cup of regular coffee. The higher boost to energy might have been a placebo effect, but the sating property of the beverage was not. I felt full. Full enough that I didn’t need to eat until hours later when I had a late lunch. All that fat really did work to fill me up. I assume the fat also helped to sustain the energy, because I felt the energy throughout the entire day.

Even with all the benefits, there was a negative that made me question whether I could continue drinking BPC. Drinking a BPC heightened my energy so much that it also heightened my anxiety. I even had a panic attack so strong that I ended up in the hospital. I don’t give up that easily, and I was determined to find the exact reason my anxiety was being triggered by BPC. After doing some research, I discovered MCT Oil was likely the culprit. I detail how I made my discovery in my Anxiety and MCT Oil post. Once I discovered what the issue was, it was fairly easy to tweak my dosage and solve the problem.

Rest of the Month

The following weeks were fine. My anxiety was rarely triggered, and I was able to control the anxiety if it ever was triggered. Over the next few weeks, I grew to love Bulletproof Coffee. The steady energy boost that it provides aids in mental clarity and focus. I have yet to grow any sort of tolerance. Each day that I consume a BPC, I feel the same mental boost.

Conclusion

Even with the panic attacks and heightened anxiety, the benefits of consuming a Bulletproof Coffee held too much weight. The benefits of energy, focus, and mental clarity motivated me to find a way to keep consuming BPC every morning. After my experiments, I’m able to continue with BPC, and I will continue for the foreseeable future.

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Keto and an Average Day with Charcot Marie Tooth

CMT Keto Banner

Even a normal, nonactive day can be exhausting for someone with Charcot Marie Tooth. I remember before my active lifestyle, I felt almost lethargic due to the sluggish feeling that comes along with having this disease. I told myself that this was only because of the disease, and I had no control over how I felt. This wasn’t true, obviously. I could improve my mental health and physical energy, but I had a crutch of a disease to blame it on. After discovering Keto, I have been pleasantly surprised by the results and how it has improved my energy, focus, and overall mood. In this post, I’m going to describe how Keto has improved my life.

Morning

Before Keto, I had a very rough time waking up in the morning. I had to set multiple alarms in hopes of getting up before 11 AM. This grogginess was something I chalked up to CMT like I did most everything else. It was the disease that was causing my fatigue and grogginess. At least, that’s what I figured.

When I started Keto, my mornings took a complete turn-around. The longer I was in ketosis, the metabolic state in which the body burns fat as the primary fuel source, the easier I found it to wake up in the morning. My body started producing energy so efficiently that I had to begin riding my bike every morning to avoid triggering my anxiety with the energy. So now that I’m fully keto-adapted, what do my mornings usually look like?

Morning Routine

I wake up around 5 AM everyday, no matter if I have work, if it’s the weekend, or what day it is. The first thing I do is make a Bulletproof Coffee (BPC) with a serving of protein powder. This kick-starts ketosis for me. BPC gives me so much energy that when I first started doing this, it triggered panic attacks. I had to experiment and eventually found the ingredients that work for me: 7 oz water, 1 shot espresso, 1 tbsp grass-fed butter, 1 tsp MCT Oil. I’m happy to report that there haven’t been any panic attacks since correcting my BPC ingredients.

With all this energy flowing through me, I have to get rid of it somehow. Some people might not like all this energy, but I love it. This energy gives me more than a reason to exercise. It almost forces me to exercise. If I don’t, I feel anxious. Every morning I bike for at least two hours, four hours optimally. Again, this is yet another task that helps kick me into ketosis. The caffeine, healthy fat, and exercise all yell at my body to start burning fat immediately, and it does just that. This sets up my day for success. This gives me stable energy all the way until I go to bed.

Breakfast

I finish up biking around 7 AM – 9 AM. All this exercise and fat burning gets me hungry. I used to try to fast throughout the morning, but I found it too difficult when doing this much cardio. I just had to eat afterward. I’ve had a favorite breakfast for months now, and I’m not sure if I’ll ever get tired of it. I just fry up uncured (nitrate-free) bacon, fry eggs in the bacon grease, and top the eggs with a whole, sliced avocado. This meal has lots of healthy fats, protein, and the avocado is rich in potassium and magnesium, vital nutrients after a workout. In addition to this meal I take supplements as well.

Supplements

There are a lot of opinionated people out there that will tell you that you shouldn’t need nutrients if you’re eating properly. I agree that in a perfect world we would get all of our vital nutrients from the food we consume, but this isn’t a perfect world. Many of my nutrients come from my food, and I almost always hit my nutrient totals with my food alone, but I take supplements just to be absolutely sure that I meet my totals for every nutrient. I have ended up in the hospital many times due to panic attacks brought on from nutrient imbalances, and I intend not to do that anymore. These are the supplements I take every morning with a reason why:

  • Vitamin D
    • CMT patients tend to be vitamin D deficient, and I’m a nerd. Bad combination.
  • Vitamin B12
    • CMT patients tend to be vitamin B12 deficient, and taking B12 helps with my hand tremors.
  • Fish Oil
    • It’s nearly impossible to get the daily amount of Omega-3 fats unless you’re eating a lot of fish everyday.
  • Magnesium
    • I’ve found it to be the most difficult electrolyte to get my total for the day.

Day

Keto-Improved Responsibilities

By the time my morning is squared away, it is usually 10 AM or so. Don’t worry. I scheduled meetings during my bike ride, so don’t assume I wasn’t working! This is about the time my dog is bothering me to go outside. If my body is willing, I will take him for a two mile walk around the neighborhood to give him his exercise, as well as to give myself a little more. This is a good time to think and quiet my thoughts in preparation for all the typing I will soon be doing. I take him for at least two walks throughout the day, three if he is a lucky dog.

The middle of the day is sneaking up on me when I’m done with Gideon, my dog. It’s usually around 11 AM that I start my serious work. This is when I’m in hyper-focus mode due to ketosis, and I use that focus to build my business, write articles, write conference sessions, code, and anything else I’ve decided to be responsible for. I thought the heightened mental state of ketosis was just some mumbo-jumbo until I started taking advantage of it. No, I didn’t grow a third eye or become one with the universe, but it definitely improved my mental capabilities.

Lunch

I usually have a late lunch. It’s around 2 PM before I start craving more food. I try to keep it light, only around 200 to 300 calories. My reason for this is that I think it forces my body to keep burning body fat instead of relying solely on the food I’ll be giving it. I keep it simple, too. I don’t have time for a complicated recipe in the middle of the day. This means it is either leftovers, more eggs and bacon, or 3-4 oz of lean meat with two cups of vegetables. Who said Keto had to be complicated?

Weight Lifting

I will do weight training depending on the day and before or after lunch depending on how I feel. I try to do weight training at least five days a week, resting on days that I fast and don’t consume any calories. For weights, I use dumbbells and kettlebells to do a full body workout over a one hour period. This post isn’t necessarily about how I train, so I’ll go into further detail in another post.

Dinner

Dinner for me is basically whatever I had for lunch, but a little larger. I use this time to meal prep for the next few days or to empty the fridge of leftovers. I’ll pan sear a few meats, roast some vegetables, enough for a few days, and save the leftovers for the next few lunches and dinners. Sometimes I’ll make something like chili, a roast, a soup, or some other more complex recipe. Again, Keto doesn’t have to be complicated.

Evening

On a normal American diet, I would be dragging my feet and feeling exhausted come evening. Even as soon as 4 PM, I would be ready to lie down when I was stuffing myself full of carbohydrates and relying on them for energy. Now with the Keto diet, I feel fine in the evening. I can continue work, do a little more exercise, take my dog for a walk, all sorts of things that I couldn’t do before. It’s like I have another day within my day now! I feel like what I imagine normal, healthy people feel like, and it’s mostly because of my new diet and exercise routine.

Sleep

After all this talk about energy, one might feel afraid that it would be difficult to go to sleep. It isn’t! I haven’t slept this well in a long time. Instead of needing naps throughout the day, I get good quality sleep every night. Without fail, I start to get tired around 9 PM and feel the need to wind down. I do just that. I usually meditate or read for the last hour that I’m awake. This helps enforce the feeling that it’s time to wind down. By the time 10 PM rolls around, I’m ready to sleep without issue.

There you have it. A peaceful conclusion to a day filled with energy, focus, productivity, and positive mental health. I used to think I would never feel this good, and now I’ve found out that it’s as easy as a healthy diet and daily exercise routine. Even with Charcot Marie Tooth, a person can lead a relatively healthy and normal lifestyle.

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Anxiety and MCT Oil

Oil

Anxiety & Panic Attacks

I’ve been dealing with anxiety most of my life. I thought I had had panic attacks before, but I learned my lesson when I really had one in July of 2017. I’ll never forget that day and the terror I felt. Ever since then, the frequency has increased. Each doctor wants to blame something different. It’s the keto diet, it’s all the exercise, it’s this and that. But the first panic attack I had was before all of these triggers, so I wasn’t about to stop the things that improved my life so much just because I was starting to have panic attacks monthly. However, have to admit that something was causing my panic attacks to be more frequent. I was starting to have them weekly!

I removed things from my diet, I changed up how I exercised, and I recorded the data. It appeared that my panic attacks seemed to happen in the morning times and correlated heavily with my energy levels. Turned out that a Bulletproof Coffee triggered me the most. My assumption was that it was the caffeine and fats sending me into heightened ketosis, and this was triggering my panic attacks. I didn’t research any further and stopped drinking Bulletproof Coffee altogether. The panic attacks ceased, but my energy took quite a hit. I had grown accustomed and longed for the day-long energy boost that only a Bulletproof Coffee can deliver. There had to be more to it than simply the fats and caffeine. Coffee had never triggered panic attacks before, even when I drank copious amounts. So maybe it wasn’t quite the energy either. What exactly was it?

The Cause

I started digging again, and I suddenly had the thought to Google “mct oil panic attack”, just to see if there was some sort of correlation. This led me to articles like this onethis post, and other resources that alluded to heightened anxiety with MCT oil. This led me to do even more research. I had known that coconut oil was metabolized much faster than other fats, but I didn’t realize that it had this much potential to trigger anxiety.

When I consume MCT Oil, I get almost an instant rush and feel as if my heart is racing. This begins a downward spiral until I am sent over the edge and a panic attack happens. I discovered this through extensive testing by changing my MCT Oil dosage and continuing my Bulletproof Coffee every morning. I can now consume MCT Oil in the right dosages without having much of an issue, and now that I understand the problem, my anxiety isn’t as intense.

Hopefully this helps anyone else that might have the same reactions to MCT Oil! Don’t give up!

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Introduction

Hey

Life with Charcot Marie Tooth

I was born with Charcot Marie Tooth. There is no cure or treatment for CMT. You just “deal” with CMT. The symptoms and side effects of CMT are something I’ve known my entire life, and I don’t know any other way of living. When someone shows pity toward me, I remind them of this as a way to deflect and not have to discuss any issues that come with this disease. However, this disease definitely sucks, and it’s time to talk about it more. The more I researched my disease, the more confusing it got. There are so many different types of the disease and people are affected in so many different ways.

Since starting a new diet and exercise routine in an attempt to improve my quality of life, I’ve decided to open up about my life with CMT. I’ve found this diet has helped me tremendously, and I think others might be able to benefit. It’s important to note that I’m not a doctor, and I’ve had next to zero training when it comes to nutrition, exercise, or the treatment of CMT. However, I do regularly visit my team of doctors that have aided in reshaping my life to improve and in some cases get rid of symptoms I have always attributed to my disease. So what exactly are these symptoms and issues? What is my unique experience with CMT?

  • Extreme fatigue
  • Brain fog
  • Muscle weakness/atrophy
  • Muscle spasms
  • Muscle cramps
  • Nerve pain
  • Numbness
  • Scoliosis
  • Arthritis
  • Bone deformation due to unbalanced muscles
  • Surgeries

When I finally listed all my symptoms and issues down, I noticed that almost all of them seemed relatively addressable. I had always used these symptoms as an excuse to not exercise or eat well. I was too tired to exercise, and obviously sugary foods would help (in the extreme short term) with my energy levels. At least, that’s how I had thought for a majority of my life. After staring my symptoms in the face, though, it seemed obvious what I should do. I needed to eat better to improve my mood and energy, and I needed to exercise in order to improve my strength and delay my muscle atrophy. That’s exactly what I started doing, and it’s the best decision I’ve made in my life.

Rebuilding a Life

I started changing up everything in February, 2018. I have always embraced change well, and this was no different. The amount of change I had to do was more than I had intended, but I took it in stride. If I ever felt like wavering off course, I just reminded myself that I was previously headed down a road that would have most likely cut my lifespan in half, and now I had a chance to really change things. In order to improve my health to a level that was optimal, I had to change up most of my life. That’s how unhealthy I was living. I had to change my diet, exercise every single day, and change my entire routine to fit around this new way of life if I wanted to see the dramatic changes I wanted.

I hadn’t really ever thought about how my diet could have such a huge impact on my life, so I started with what made the most sense to me at the time: increase activity and improve my health. I had been told by most doctors that it is nearly impossible for someone with CMT to build muscle. Most online communities will reinforce this idea, so I had used this as a reason to just not exercise. What’s the point if I can’t build muscle? After 27 years of thinking this way, I finally said screw it. I’ll throw all caution to the wind and start exercising with no excuses. I began doing cardio for half an hour and weight training for another half an hour at least 5 days a week. To my surprise, I began to quickly build muscle and my energy greatly improved. I was still pretty tired, but I could definitely feel my energy and strength increasing the more I exercised. After a couple of months, I was hooked, and I exercise nearly every single day now. The only days that I rest are the days that I fast. I wasn’t losing much weight, though, and even though my strength was improving, my self image was not. I still felt unhealthy. I needed something else to improve my life. I needed to lose weight and to feel better. I happened upon a documentary on Netflix that changed how I thought about food and how much it impacts my health.

The Magic Pill is a documentary on Netflix that randomly appeared in my suggestions one day. I glanced over it many times for quite awhile. I assumed it was about some dumb fad, and so I ignored it for the most part. I finally gave it a shot after running out of things to watch. It turned out that the documentary was about ketogenic diets. Turns out the documentary wasn’t selling anything but a way of eating. You don’t have to pay any particular company a dime to follow a ketogenic diet. It’s a lifestyle and not just a diet to lose weight. I learned that it wasn’t just a fad, but a way of eating that we should naturally be following. I decided to give it a shot, and it tremendously improved my life.

The ketogenic diet is simpler than some will have you think. You simply remove all refined and simple carbohydrates, eliminate unhealthy fats, increase healthy fats, and increase the quality of your foods. That last part is something some ketogenic dieters ignore. The quality of food is important in this diet. Ketogenic is pretty much that simple: eat healthy protein and fats, and get any carbohydrates from whole vegetables and fiber. This can be as simple as a pan seared meat with roasted vegetables, a shrimp salad, or eggs, bacon, and avocados. I had no qualms changing over to this diet, and the benefits were almost immediate. Within a week I felt my hunger almost disappear. I never craved foods, I just felt the need to take in nutrients, and that I did. I took in the best nutrients I could find. I felt my energy shoot through the roof. Others might not feel this big of an increase, but as someone that felt nearly lethargic, the increase was quite noticeable. I had to start going for a bike ride every morning when I woke up because I had so much energy that I felt panicky. My muscle spasms, cramps, and weakness started to go away within weeks. The better I ate, the better I felt. What a surprise!

So how did I manage to make all these huge changes? What did I do to get all this done? Well, surprisingly, it really wasn’t that complicated. The diet is very normal. I just had to cut out carbohydrates. I could still eat bacon, steak, roast, all sorts of delicious food. I just kept cooking like I always had, but it was organic meat and vegetables instead of bread, fruit, and processed foods. Easy enough! The toughest part was the exercise, especially at first while I wasn’t on the ketogenic diet. Working up the energy to exercise while living with CMT is difficult. It’s hard for me to describe the muscle fatigue that comes with CMT. While lifting weights, it’s as if you’re moving through quicksand, and sometimes your muscles just shut off intermittently as the nerves stop firing. It’s annoying and an odd feeling while working out. I’ll go into how the diet has helped improve these symptoms in another post in the future, but I don’t feel like this as much while working out anymore, and I believe it’s thanks to the ketogenic diet.

Reason for CMT Keto

The main reason I have started this blog is to help spread awareness of CMT. It is one of the most common muscular dystrophies, yet it’s barely understood or researched compared to most others. I also want to inspire others to try and improve their life with CMT. It doesn’t have to suck that much. In my case, I am able to build muscle. I am able to feel normal and not tired all the time. I am able to exercise regularly. I am able to take control of my life with CMT and improve it with Keto and exercise. I think others can too!