↓
 
Some posts contain affiliate links, marked with an asterisk *
Daily Journal with Mitochondrial Myopathy

Day by Day with a Movement Disorder

My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

  • About Me – My MITO Story
  • Privacy Policy
  • Contact Us
Home→Tags LCHF

Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

Tag Archives: LCHF

Still on LCHF Lifestyle – Still Dealing with MITO

Day by Day with a Movement Disorder Posted on February 23, 2014 by DBMay 8, 2016 2

I’m continuing on with the Low Carb High Fat lifestyle and finding it very easy now to comply with the no grain, no below ground vegetables, and no legumes or beans other than green beans.

I’m using an easy to make dessert that satisfies my chocolate craving and a no wheat egg bread recipe that cooks in the microwave oven in less than 2 minutes. Those two recipes alone are probably responsible for keeping me on this diet.

My eyes are better, but still not back to normal. My eye doctor really doesn’t think the change in diet is at fault, as tears are made of lipids (fats), and I’m certainly getting plenty of good Medium Chain Triglycerides in the Coconut Oil I consume daily.

He would normally prescribe steroid drops at this point, or Restasis. But we’re both reluctant to do that, because of my Mitochondrial Myopathy. So he’s recommended hot compresses twice a day and massaging the lids with a water and baby shampoo solution. The hope is that my tear glands will start producing more tears due to the stimulation.

I am losing weight for sure, and I’ve only felt hunger a few times since I started this diet in earnest in mid January. The first couple of weeks in January were spent gradually changing over and using up the food that was already in the house.

The digestion issues resolved themselves, as I had hoped they would. I do take MiraLax every morning, but I’ve been doing that for many years. My digestive system muscles are weaker than normal, thanks to the MITO, so dealing with constipation is par for the course.

I did have an upsetting situation develop in church today. We’re having some kind of short in our sound system that has caused me to go into Myoclonic jerks the last few weeks. But it seemed like today there were more sudden high squeaks from the organ and more crackling sounds out of nowhere that just set me off. By the time the service was ending I was in full Myoclonus and crying. Everyone nearby came to find out if I was OK, but all I could tell them was that I was OK, but the genetic disorder I have makes me have a hyper startle reflex.

I really appreciate their concern, but it embarrasses me when I go into one of these “fits”. The more I try to stop the jerking, the worse they get. I just have to find a way to relax and wait them out. It’s been some time since I had this much trouble with the jerking, but the constant pain I’ve been in for months now probably contributes to my tolerance level for unexpected noise being way down low.

So I continue to have muscle issues and other odd problems caused or exacerbated by MITO, but I’m also working hard to find the right combination of diet and activity to maximize my quality of life. I have been reading every book on nutrition I can get my hands on for several years now and continue to do so. And I’m currently going to physical therapy twice a week, hoping to strengthen the muscles in my neck, back, and shoulders and alleviate my pain.

Posted in MITO, Nutrition | Tagged coconut oil, constipation, high fat, LCHF, low carbohydrates, MCT, medium chain triglycerides, Miralax, MITO, Mitochondrial Myopathy, myoclonus, nutrition, pain, Physical Therapy, startle reflex | 2 Replies

Irritated Eyes and Digestive System – UGH

Day by Day with a Movement Disorder Posted on February 6, 2014 by DBMay 8, 2016  

I’ve been dealing with eye issues for the last few weeks. I figured it was just allergies, as I’ve had a runny nose, too, but I obviously didn’t have a cold. Lots of itchiness and feeling like I had an eyelash in my eye, and it was progressively getting worse. I reached a point where being in sunlight or in bright lights was very painful.

So off to the eye doctor I went, reluctantly, but I really didn’t have a choice. Turns out it was a bacterial infection, and he put me on antibiotic and steroid eye drops.

I was still very uncomfortable, even after I finished the bottle, so we went back to the doctor. I have a history of dry eye syndrome, so this time he plugged the lower tear duct holes with lachrymal implants. The purpose of these is to keep the tears from evaporating off the eyeball so quickly.

Thanks to my Mitochondrial Myopathy, we both agreed that the implants were a better choice than Restasis, the usual drug prescribed for this issue. The fewer toxins I put in my body the better. He had tried the implants some years ago, but they came out. At least they got me through the allergy season that had me irritated at that time. I’m hoping for the same good outcome this time.

I’ve also had constipation problems ever since we were stuck in a hotel for two days after a harrowing two plus hour drive to get out of the unexpectedly heavy snow storm that hit the South last week. I shouldn’t be surprised, considering both of our stress levels had to have gone through the roof while we crept along that three miles to the hotel.

We weren’t able to eat what we normally would either, which I’m sure just added to the problem. But the reason I bother to mention this is the new LCHF diet I’m on makes me wonder if the constipation was more due to stress or to the drastic change in what I eat, particularly the huge increase in my fat intake. Time will tell whether it’s diet related, or just a blip caused by such an unusual week.

I know how to deal with the constipation, as that has been a recurring problem for many years. One of the ways my Mitochondrial Myopathy presents itself is a slow digestive process, called gastroparesis. But not being able to read for any length of time or work on the computer is bothering me greatly.

I pray that the implants stay in long enough to improve the quality of my tear production and heal my irritated eyeballs. And I hope the constipation problem was temporary and not caused by the LCHF lifestyle I’m trying very hard to live.

Posted in MITO | Tagged allergies, constipation, gastroparesis, high fat, lachrymal implants, LCHF, low carbohydrates, Mitochondrial Myopathy, Restasis | Leave a reply

Continuing with the LCHF Lifestyle

Day by Day with a Movement Disorder Posted on February 2, 2014 by DBMay 8, 2016 7

I’ve spent the last month gradually changing over to eating on the Low Carb High Fat (LCHF) lifestyle. I say lifestyle, not only because it’s such a drastic change from what we’ve all been told was best for us, but because it’s not really a weight loss diet. And that’s what everyone thinks if you say you’re on a diet.

Anyway, I was well on my way to eating this way already, since I’m diabetic. So it’s probably not been as hard for me as it would most people. But it’s still been quite an adjustment to stop eating ALL grains, beans, and below ground vegetables.

I have enjoyed eating all the eggs! And they have naturally the right percentage of fat, carb, and protein. Other diets, such as Atkins, replace the carbs with more protein. But this diet replaces all the carbs with fat calories. And I can state categorically – I’m not hungry!!

There are lots of possibilities as far as what I could be eating, but here’s a general idea of what a day is like for me now. Breakfast is 1/4 cup of nut pieces, a tablespoon of flax meal, and a cup of almond or coconut milk. I eat it as if it were cereal, and that keeps me going just fine until lunch.

Lunch at home is what it’s always been (since I was diagnosed with Type II Diabetes). Hubby cooks a stir fry of vegetables in olive oil, often with ham. He still eats whole grain bread with it, but I don’t.

Afternoon snack is usually half of an avocado or something called a chocolate Fat Bomb. It’s a homemade chocolate candy that is basically unsweetened cocoa, butter, and coconut oil.

I’m keeping track of my food intake on http://www.myfitnesspal.com, so I can tell how many calories I have left for the day. I do hope to lose some belly fat on this diet, so I’ve set a calorie limit for myself. And I need to learn how to keep the protein and carb intake low and the fat count high, so tracking my nutrition is helpful. Once I see where I stand nutrition wise, I decide how many eggs I can have for supper and whether I can add cheese, spinach, and/or mushrooms.

It’s really weird. I’ve not craved any sweets I was used to eating, like ice cream on Sundays. I do miss the great sandwiches chock full of veggies that hubby used to fix me for dinner, but I can still have them as a salad.

I found an easy to fix coconut flour and egg bread substitute that cooks in the microwave. I make that when I’m craving bread.

Eating out has been the hardest to adjust to, and we eat out several times a week on average. But again, I was already used to finding suitable foods in restaurants, because of the diabetic restrictions, and that helped. So far I’ve been able to stick to the ketogenic diet pretty well.

And the Ketostix test strips I use show that I am in Ketosis. That’s the secret to this lifestyle. The goal is to change the cells over to using ketones for energy, instead of carbs. Mitochondria use ketones more efficiently than they do glucose, which is supposed to increase my energy level. It has definitely done that. There’s no difference in pain level yet, and as long as I stay on the pain meds I may not see an improvement in the brain fog, but I’m still optimistic about that improving in the future.

As I see my energy level increase it gives me reason to continue with this lifestyle, with the hope that the brain fog will lift, and the improved mitochondrial activity will lessen my muscle pain. Only time and patience will tell.

Posted in Nutrition, Type II Diabetes | Tagged diabetes, fat bomb, high fat, intake diary, Ketogenic, ketones, ketosis, LCHF, low carbohydrates, mitochondria, nutrition | 7 Replies

Trying the Low Carb High Fat Lifestyle

Day by Day with a Movement Disorder Posted on January 19, 2014 by DBMay 8, 2016 2

I’ve been studying anything and everything I could get my hands on about mitochondria and cellular energy production ever since I received the diagnosis of Mitochondrial Myopathy. Since the doctors can’t offer much in the way of treatment, other than suggestions of taking CoEnzymeQ10 and B vitamins, it seemed that if I were to improve – it was going to be by improving my diet.

So over the last year I’ve studied several books and searched all over the internet for information about Paleo, Biblical diets like the Maker’s Diet, and most recently Low Carb High Fat (LCHF), or Ketogenic diets. These are not “diets” in the usual sense of the word, but lifestyle changes. I found quite a few points of common ground in all three of these approaches.

All three emphasize eating the way God meant for our bodies to be fueled, long before the food industry convinced us that stuff in pretty cardboard boxes was better for us than real food. And all of them would be appropriate for my Type II Diabetes.

After seeing Dr. Perlmutter on the Dr. Oz show some time ago, I bought his latest book, “Grain Brain”, and found his approach to make sense for me.

So I’ve been grain free and also greatly increased my fat intake for about the last two weeks and can definitely tell the difference in my energy level. And I don’t just mean I feel peppier – I’ve actually not been as cold as I normally would have been. It may just be a placebo effect, but I’ll take it, either way!

I’m hoping I will see some of the brain fog lift as well, as I reduce the inflammation in my gut that gluten has probably been causing. In all the years of digestion issues I’ve had – I have never been tested for gluten sensitivity, even though I have been diagnosed with IBS and GERD, as well as experienced several ulcers over the years. Since I have so many symptoms of gluten sensitivity, it seemed worthwhile to experiment with the Grain Free approach for at least a couple of months.

I don’t think the dietary adjustments required in a LCHF or Ketogenic diet are something that everyone would want to adhere to, but the continued pain, lack of energy, and brain fog I’ve been experiencing now for several years has made me desperate enough to try just about anything that looks safe.

Posted in Nutrition | Tagged diet, digestion, energy, gluten, Ketogenic, LCHF, Maker's Diet, MITO, Mitochondrial Myopathy, nutrition, Paleo | 2 Replies

Recent Posts

  • Mitochondrial Disease Treatment in Phase 3 Trial October 21, 2019
  • God’s Healing Sunlight March 31, 2018
  • Immune System Issues, Slowly Recuperating January 25, 2018
  • Flu Shot? Yes or No? December 20, 2017
  • Nutrition Information Sources December 14, 2017

Archives

Tags

balance blood glucose brain fog care giving depression diabetes diagnosis diet difficulty walking elimination difficulties Essential Myoclonus exercise exhaustion Friday Date Day gait gas Gastroenterologist GERD God insomnia MITO Mitochondrial Myopathy Movement Disorder muscle spasms nausea Neurologist nutrition pain Parkinson's peripheral neuropathy Physical Therapy prayer prescriptions Primidone PWP Quality of Life Requip Sinemet Sleep Apnea stomach stress symptoms tremors weakness Zelepar

Our Websites

  • Dirty Butter – Cherished Memories Dirty Butter – Cherished Memories
  • Dirty Butter Plush Animal Shoppe Dirty Butter Plush Animal Shoppe
  • Plush Memories Lost Toy Search Service Plush Memories Lost Toy Search Service
  • Yesterday's Memories Yesterday's Memories

Blog Friends

  • A Catholic Life – A Family Dealing with MITO
  • Anuket's Crusade
  • Baby Food Steps
  • Gilbert Guide Blog
  • Gimp Parade
  • GodsPlans
  • Leafing
  • Life According to Liz
  • Life with Shaky
  • Living in the Slow Lane
  • Mito Families!
  • Mozart Movement
  • My Father's Hand
  • My Life as a Mighty Mito Mama
  • My Own Arcadia – Spanish Language Blog with Parkinson's Information
  • Parkinson's Straight from the Horse's Mouth
  • Parkinsonism – Road to Diagnosis
  • Patients Like Me (All Kinds of Diseases)
  • PD Plus Me
  • Princess Leah Diaries
  • Shake, Rattle, and Roll
  • Taking Baby(food) Steps
  • Today with Pokie Too and PD
  • Wheelie Catholic
  • YOPD

Mitochondrial Myopathy Resources

  • Correcting Human Mitochondrial Mutations
  • mitoACTION
  • Mitochondria Research Society
  • Mitochondrial Bottleneck Cracked
  • Mitochondrial Cytopathy in Adults
  • Mitochondrial Myopathy Disease Foundation
  • Mitochondrial Vitamin Cocktail – A Guide for Patients
  • Muscular Dystrophy Association
  • NIH – Monkey DNA Swap May Block Mitochondrial Disease
  • Overview of MELAS
  • Research Match
  • Scientific American Article about Using Glutathione as a Marker
  • UAB Researchers Explore the Mystery of Mitochondria
  • When Cells Face an Energy Crisis

Nutrition Resources

  • Keto Calculator
  • Ketogenic Diet Resources
  • Maria Mind Body Health
  • Treating Constipation without Destroying Your Gut

Products I Use

  • RubyLux NIR-A Infrared Bulb
  • Satori Qigong Flow Form
  • The Energy Blueprint

Parkinson's Disease Resources

  • Parkinson's and Movement Disorders Center
  • The Brain from Top to Bottom

Peripheral Neuropathy Resources

  • About.com Guide to Peripheral Neuropathy
  • An Algorithm for the Evaluation of Peripheral Neuropathy
  • Brain Tumor Dictionary
  • Charcot-Marie-Tooth Association CMTA
  • How to Choose and Use a Walker
  • Jack Miller Center for Peripheral Neuropathy
  • Peripheral Neuropathy Fact Sheet

Radial Neuropathy Resources

  • The Wrist Drop of Saturday Night

Subcribe to Our Feed

©2022 - Day by Day with a Movement Disorder - Weaver Xtreme Theme Privacy Policy
↑
Translate »