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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

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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!

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Immune System Issues, Slowly Recuperating

Day by Day with a Movement Disorder Posted on January 25, 2018 by DBSeptember 30, 2019  

Immune System Takes a Hit

My immune system has certainly taken a hit in the last six weeks or so. Back around Thanksgiving I came down with a bad sinus infection that turned out to be MRSA. The skull base surgeon put me on a powerful antibiotic. Then, the day before I finished the round of that antibiotic, I was diagnosed by my Primary Doctor with a strep throat. So that meant another round of antibiotics. I always take a probiotic, so at least I didn’t have to deal with a yeast infection!

It’s been a long time since I’ve run a fever, but I sure did with these infections. I didn’t feel like doing much of anything. The bad part about it was that dear hubby was also sick with the crud that’s going around in our town. It’s not the flu, but the coughing fits seem to go on forever and the whole mess lasts for several weeks. So he didn’t feel like taking care of me, and I didn’t feel like taking care of him. The poor cats were lucky to be fed LOL. I stayed out of church for several weeks, and we didn’t even go out to eat, either.

The Worst Is Over

Anyway, we’re both pretty much over our infections, and he’s more or less back to normal. I, on the other hand, have been so weak it’s all I’ve been able to do to walk around to do what just had to be done. I had cut way back on my food intake while I was running such a high fever. Food doesn’t taste that good now, anyway, thanks to my sense of smell being so limited for the last couple of years. But the thought of fixing any food was just too much. So, I lost about 5 pounds.

Now it’s time to work to get my immune system working properly again. I’ve gradually returned to the good nutrition I was used to eating. Our diet is based on whole foods, mostly plants, as The Energy Blueprint* program I’m following recommends. I have increased my protein intake, too. I had stayed away from kefir while I had a fever. Dairy products just didn’t sound like a good idea then. Now I’m back to making kefir for the probiotics and growing broccoli sprouts for the phytonutrients every day.

Not Exercising Yet

Up until the last couple of days, I didn’t dare try anything that resembled exercising. Just absolutely necessary walking and standing in the house was quite enough to exhaust me. But now I’ve started being more active. I haven’t vacuumed the house yet, but I did walk once around the yard yesterday and today. I had gradually worked up to 8 laps around the house (about a quarter mile total) prior to getting sick, so it will be awhile before I get back to that point.

And I haven’t been to the gym at all since before Thanksgiving. Maybe next week I’ll try going long enough to at least use the recumbent bike for maybe 10 minutes and then relax on the water massage machine. I have a free membership to a Silver Sneakers gym, thanks to my health insurance. Getting more exercise will improve my immune system and a great way to increase my mitochondrial health.

DIY Sauna

I had stopped using my DIY infra-red sauna setup, too. I was just too weak to dare use the heat lamps for fear I’d faint. But I have now started gradually using it again. And I’m almost back to my full Energy Blueprint* light routine now. The small bathroom now has my 3 infra-red lamps setup that is meant to help with detoxing and increasing cellular energy. I’ve moved the 10,000 lux full spectrum lamp that helps to set my Circadian Rhythm and prevent Seasonal Affective Disorder in there, too. At my skull base surgeon’s insistence, I’ve also started back smelling the essential oils while I’m using the sauna. He still feels like I can get my smell back if I keep working at it.

AND I’ve recently added dry brushing my skin to my sauna routine as a way to improve my circulation. It’s supposed to help with detoxing under the infra-red lamps, too. All the while I’m doing the rotisserie chicken imitation under the red lights and white light, so I can get all the benefits at the same time.

I also recently purchased a special 850 nm wavelength light panel that The Energy Blueprint* recommended. That wavelength increases the photobiomodulation that is supposed to increase my mitochondrial energy. I’m only standing close to it for about 5 minutes or so each day. I want to increase my exposure very slowly, so I get the benefits without causing any issues for my mitochondria.

All the time I’m in my sauna I’m usually listening to a health related podcast or learning a stress relieving breathing program. I pack a lot into that 30 minutes of me time.

Working at Getting Better

So my immune system was hard hit with one infection after another. But I’m gradually improving and feeling more like putting in the work to improve my mitochondrial function. Now to just get myself back to where I was this Summer!!

Oh NO! Revision

Well, I just got a call back from the skull base surgeon’s office. I had a “routine” visit with him last week, and they took another culture. I STILL have MRSA – so now 3 more weeks of antibiotics. UGH!

Posted in Quality of Life | Tagged energy, immune system, nutrition, recuperation, The Energy Blueprint | Leave a reply

Nutrition Information Sources

Day by Day with a Movement Disorder Posted on December 14, 2017 by DBDecember 18, 2017  

Energy Blueprint

We have been working on improving our diet and supplement choices for some years now. My Type II Diabetes diagnosis started us on the journey to more healthy eating. And hubby has been more interested in making improvements since his triple bypass heart surgery. We’ve been following The Energy Blueprint* protocol for about six months with considerable success. There are many strategies in the program that help to increase mitochondrial function. The program contains tons of good nutrition information. And it does not limit a person to eating one particular dietary lifestyle. So we were able to take what we were already eating and just improve it a bit.

We have lived in the South all our lives, but we certainly don’t eat “Southern”.  We have upped our serving of raw greens and other healthy raw veggies and fermented foods. Today we grated turmeric root into our huge lunch salad, a new experience for us. I had no idea what it was going to taste like and was pleasantly surprised it was not “weird” – maybe like a cross between a radish and a carrot??

Examine.com

Another source I recently found for reliable information about supplements and nutrition is Examine.com*. They do NOT sell any supplements, but they do sell a reasonably priced pdf encyclopedia of Supplements, plus some other materials. You can search the encyclopedia by supplement and by health concern. Each supplement has a graph showing results of medical research using that supplement to treat various health problems. I’m finding it extremely useful. And they keep the encyclopedia updated with results from current medical journal studies. There are also lots of free articles, such as this one on Super Foods, and if you open an account with them you will get informative emails.

We continue to learn ways to improve my health and my hubby’s. We may be in our 70’s, but we want to be as healthy as we possibly can. We’ve seen first hand the devastation of dementia while we were caregivers for our parents, and we want to do everything we can to enjoy a high quality of life as long as we can.

Nutrition Information

I could only wish that we had been this health conscious many years ago. But I thank God that hubby found The Energy Blueprint* program and we took the leap of faith to buy it. It has certainly been money well spent. And I’m glad I found Examine.com*. We continue to use the internet to learn as much as we can. And I plan to continue sharing sources of nutrition information with you. Hopefully something I write encourages you to improve your own lifestyle.

 

Posted in Nutrition | Tagged energy, examine.com, mitochondria, nutrition, Quality of Life, supplements, The Energy Blueprint | Leave a reply

Eating Habits Changed

Day by Day with a Movement Disorder Posted on October 26, 2017 by DBJune 6, 2019 2

I’ve never liked to cook, so over time we’ve changed our eating habits from cooked to raw. We’ve been eating salads for lunch for several years. But thanks to The Energy Blueprint* program, our lunch salad is now gigantic. And we eat largely raw for breakfast and supper as well. We like to eat out several times a week, so that’s the only time we eat a completely cooked meal any more.

We consciously eat fruits and vegetables of different colors every day. That way we get a wide variety of phytonutrients without having to take so many pills. And we intentionally vary the fruits and vegetables we buy each week to add even more variety to our meals.

We do still eat some meat, and we keep hard boiled eggs handy at all times for added protein. Occasionally I’ll fix an omelet with coconut oil and lots of veggies. Hubby still eats bread, but I rarely do. Once in a blue moon I’ll fix organic oatmeal, but I try to avoid gluten grains.

Trying New Foods

I’ve discovered purple potatoes! These little new potato size wonders have purple skin AND purple insides. The color means they are extra rich in anthocyanins, which are very powerful nutrients with many health benefits. Since I’m a Type II diabetic, I boil a pot of them at the beginning of the week and then eat them cold. Sometimes I have them for breakfast and occasionally for supper. I add them to our lunch salad sometimes. Cold potatoes have what is called resistant starch, which does not create an insulin spike the way hot potatoes do. Of course I eat the skin, too.

When I eat the potatoes, I also have fresh fruit, such as raspberries or blueberries, or red grapes. And we’ve discovered a kind of grapes I had never heard of before – Moon Drops! They are long! Sometimes they are almost as long as my little finger! And they are such a dark purple they look almost black.

And I’m eating WAY more blueberries than I ever have before – usually at every meal. Dark blue, purple, and red fruits and vegetables, plus lots of different greens make up a large part of our diet now. We had made salads with spinach for many years, but now our salads also include arugula, butter lettuce, and watercress. We had tried kale in the past and didn’t like it, so that’s not been included.

Eating Fermented Every Meal

I make milk kefir every day now, something I had never tasted before going on the Energy Blueprint program. But one of the suggestions in the Blueprint is to eat fermented foods at each meal. They have way more probiotics in them than any supplement we could be buying. I make a “cereal” with pecan pieces, flaxseed meal, and kefir most mornings. I’ve always liked yogurt and cottage cheese, so it was not surprising that I like kefir. It’s a little like buttermilk, but tastes a little different to me. I bought the starter online, and it only takes a few minutes to make a full glass for each day. I’ve always loved milk, but as I have gotten older, I’ve become lactose intolerant. The kefir grains digest the lactose in the milk as they ferment it, so it’s not been a problem for me to digest it. And it increases my calcium intake – something I need, since I have Osteopenia.

I’m also learning how to make my own sauerkraut. And, again to up the nutrition value, I make it with purple cabbage! I’m still experimenting with how to do this easily, and have had one complete flop that I had to throw away. I don’t like a lot of salt, so it’s a matter of using enough salt in the brine to keep it from spoiling, without getting it so salty I can’t stand it.

Sprouting Seeds

Another new discovery for me is sprouting seeds. Sprouts are a powerhouse of natural energy and nutrition. Hubby bought a big container of alfalfa sprouts from the store to add to our ever growing salads, but it went bad before we could eat it all. After doing some research, I discovered that broccoli sprouts are way higher in nutrition than grown broccoli florets. And I’ve always had digestive troubles with raw broccoli, anyway. But growing my own broccoli sprouts has been easy, and I eat them with every meal now – even breakfast.

Healthy Oils

Since we’re not cooking at home, we’ve had to make an effort to get the good fats in our diet. Improving our fat intake is still a work in progress. I get some fat from my whole milk kefir every day, and a little bit of olive oil from the vinaigrette salad dressing we use. Hubby eats yogurt every day, but he usually eats the low fat kind, so that doesn’t help as much as the higher fat types would. I try to eat an avocado every day, as well. And we eat pecans and walnuts every day. We also take MCT C8 oil several times a day. It is a brain boosting fat made from coconut oil.

Changed Eating Habits = Better Health

All these changes from the typical Southern fried foods diet has not happened overnight. We took the first steps in changing our eating habits when I was diagnosed with Type II Diabetes. We gradually moved away from frying, then stopped cooking everything, and finally stopped buying processed foods almost entirely. The Energy Blueprint program encouraged me to increase my intake of raw fruits and vegetables. And today I can honestly say I am feeling more energetic than I have felt in decades. Diet is not the only thing I’ve changed while following this program, but it’s certainly an important factor in my improved health.

Posted in Nutrition | Tagged energy, fermented foods, nutrition, probiotics, raw foods, sprouting seeds, The Energy Blueprint, whole food plant based diet | 2 Replies

Lifestyle Changes = Feeling Great

Day by Day with a Movement Disorder Posted on October 5, 2017 by DBDecember 2, 2017 8

I’ve made a lot of lifestyle changes over the last few months, and I’m feeling better than I have in years.

Exercising Again

As part of the changes I’ve been making, based on The Energy Blueprint Program*, I’ve gradually increased my activity level over the last few months. I can now walk briskly around the perimeter of our yard four times – maybe 1600 feet. When I started, walking 50 feet wore me out. Hubby and I have used Handicap stickers for years, and we’ve always needed them. With his paralyzed leg, hubby still needs his. Me…. not so much. THAT’s a huge improvement for me.

I’ve also found online a Qigong program that suits me, called the Satori Method Flow Form. The Sensei teaches a Westernized version of the Asian practice. And he’s a good teacher. I used to do Tai Chi regularly. But I quit practicing it as I got weaker, and eventually I forgot how to do the forms. This time, I had a lot of tension from the high powered steroids I was on after surgery. I was considering getting a series of massages as a way to relax and stop the insomnia.  Buying this program seemed to be a better use of the money to me. And I’m glad I did.

I’m still learning how to do this method, but the downloaded lessons are well done and only cover a few moves at a time. Plus there is a practice video for each section. That way I can work on the forms a little at a time and then try to follow as the pieces are put together. The squatting leg movements have done a lot to strengthen my legs, but I still have a long way to go before I can practice for 30 minutes without being worn slap out. But even though I’m tired, and even a little sweaty by the time I stop, I’m very relaxed.

Nutrition Improved

Ari Whitten, the originator of the Energy Blueprint, does not advocate any particular diet style, other than to emphasize a Whole Food Plant Based diet, preferably organic. He leaves the choice to eat meat or not up to the individual, but really does emphasize that any meat needs to be grass fed and hormone free. We haven’t made the change to organic yet. He really emphasizes eating large numbers of raw vegetables and fruits, so we’ve greatly increased the size of our usual lunchtime salad. I’m also eating something fermented at every meal. I’ve even learned how to make kefir and sauerkraut, and I add home grown broccoli sprouts to every meal as well – even breakfast!

Mitochondrial Energy Increased

Energy Blueprint explains many scientifically researched strategies that directly increase the energy level that the mitochondria create in the cells. I’ve consistently been sunbathing since learning that this will increase my energy without having to eat more calories. And I can definitely testify that it is working for me.

Since sunbathing will be out of the question once the cold weather comes to Alabama, I have also made a home-made version of an infra-red sauna in our bathroom. I Googled DIY sauna to come up with something that works for me. I can use this regardless of the weather or season.

Since I have had cold intolerance for many years now – a common symptom of Mitochondrial Disease – the heat feels fantastic. And it’s been so long since I could sweat, I know that’s helping me heal. Hopefully I’m getting rid of some toxins that are released in sweat, but don’t leave the body any other way.

Lifestyle Changes Making a Noticeable Difference

A lot of people at church have been asking me lately how I feel. I think it’s because my tan makes me look healthier, and I’m walking so much better! It’s wonderful to be able to say I’m feeling better than I have in years!

Thanks be to God for his Healing Hand in leading me to the right surgeon to deal with my serious sinus infection and bone overgrowth. And we thank Him for making us aware of the Energy Blueprint Program. Because of that program I’ve made a lot of positive lifestyle changes. I plan to continue gradually making changes the program suggests to improve my mitochondrial function. The reward of feeling so good makes the new lifestyle changes worthwhile, even though it means changing habits of a lifetime!

 

 

Posted in Quality of Life | Tagged energy, exercise, mitochondria, nutrition, qigong, Satori Method Flow Form, The Energy Blueprint, whole food plant based diet | 8 Replies

MITO Messing with Healing Process?

Day by Day with a Movement Disorder Posted on January 11, 2017 by DBJanuary 11, 2017  

I had FESS endoscopic sinus surgery about ten weeks ago. The surgery went well, but the healing process has not gone as well as expected.

MITO Messing with Healing

There’s no way to be sure, but my ENT thinks it might be my MITO messing with the healing process. By now the mucous membranes should be all back to normal, but instead, I still have scabs and crusting that he has to debride (remove the scabs so the raw edge has a chance to heal correctly). I wasn’t expecting any more of that and hadn’t pre-dosed with pain meds for my appointment today. I sure wish I had.

Post Nasal Gunk

I still have thick mucous draining down the back of my throat. That’s keeping my throat irritated, and my voice doesn’t sound right. I can’t taste food as well I did before, either. He thinks that discharge is a result of the lining not healing properly. And of course, when the nose is not working properly, food doesn’t taste the same.

Breathing Easier

I CAN say that I can now breathe better than I have in years – so opening up the sinuses has stopped the clogged sinus issue I’ve dealt with for a long time.

Back on Antibiotics

He has put me back on a stronger antibiotic. I am supposed to add it to the daily nasal wash. With only a few weeks here and there without them, I’ve been on one antibiotic or another for over a year now. I’m taking Theralac probiotics to prevent most of the digestive issues that causes.

I see him again in three weeks. I’ll take my pain meds before hand, that’s for sure! I’ll also spend the next 3 weeks trying really hard to get super nutrition – I’ve strayed a good bit from my normal eating habits, thanks to the holidays. Also, not being able to taste foods very much has triggered me to eat more of some things that I normally wouldn’t, because I can still taste them – like popcorn LOL.

So I’m praying for a good report in three weeks!

Posted in MITO, Surgery | Tagged antibiotics, healing, MITO, nutrition, post nasal drip, surgery | Leave a reply

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

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

Now THAT Was a Doctor Appointment!!

Day by Day with a Movement Disorder Posted on November 3, 2012 by DBMay 8, 2016 4

I can’t praise my newest doctor enough. I had asked my Neurologist several months ago for a referral to a Nutritionist, since none of my doctors seemed willing or able to give direction to my own research on supplements and cofactors. Most Nutritionists offices I’ve found on the internet appear to be glorified weight-loss clinics, but this one is different. I’m sure that’s why I had to wait so long for the appointment.

I finally had the appointment this week, and the dialogue with the doctor lasted TWO HOURS!! It was the most thorough question and answer period with a doctor I have ever had in my life. He asked many questions about lifestyle, medical history of mine and my family, my sleeping habits, spiritual values, as well as the obvious questions about my current eating habits.

He asked lots of questions about how my Mitochondrial Myopathy presents, how it is inherited, and all the issues I’ve had over the years that were misdiagnosed, but were obviously early manifestations of this disease.

He spent time explaining his approach to achieving maximum nutrition. Unlike my desperate visit to the herbalist, there was absolutely nothing mumbo jumbo in his philosophy, but he still obviously embraces much of the holistic approach to medicine.

For the first time since my diagnosis, I have now had a comprehensive blood panel testing for current levels of every imaginable vitamin and mineral, as well as more standard blood panel tests. He’s also re-tested my heavy metal levels, as we live very near an EPA toxic site that is still being monitored. The phlebotomist took 14 tubes of blood!!

I see him again in two weeks, and we’re looking forward to it. I am to keep a food log for the 7 days prior to the appointment.

In the meantime, he wants me to up my protein intake – and he made specific suggestions about what to eat more of, based on foods I had already indicated that I liked and ate. And he wants me to do chair yoga and meditation daily, practices I have previously only dabbled with.

But the most wonderful and hopeful part of this office visit was his request that I provide him with information, so he could do research on his own about Mitochondrial Myopathy!! I do carry with me in my “medical bag” a card from Mito Action that outlines information for clinicians, and of course that has their url on it. He was very pleased to get that as a start, and I’ll be taking a list with us, and lots of printouts, when we see him again.

For the first time in a long time – we feel HOPE!

Posted in MITO, Nutrition | Tagged blood tests, hope, MITO, MitoAction, Mitochondrial Myopathy, nutrition, Nutritionist | 4 Replies

Earning my Medical Degree

Day by Day with a Movement Disorder Posted on August 22, 2012 by DBMay 8, 2016 4

I decided that the only way I was going to be able to get an accurate picture of what nutrients and supplements I was taking was to get out all the bottles and make a spreadsheet of each and every nutrient in them, with the amount of each vitamin, mineral, enzyme, etc., they contained.

That task took me a couple of weeks, because I kept getting confused by all the various ways different bottles displayed their contents. But I finally finished it, and I now know how much each pill costs me a day, how long a bottle lasts, and exactly what the total is for each supplement. I found one, D3, that I felt sure I was getting too much of, so until I can see a Nutritionist, I’ve cut that dose down considerably.

I’ve asked every medical doctor I’ve seen in the last month or so if they could refer me to a Nutritionist, with very little help in that direction. I saw my Neuro last week, and he gave me a recommendation. I have an appointment with that Dr. in November. Until then I’m basing my supplement regimen on my own attempts to do research.

I feel like I’m studying for a medical degree!! And I’ve about decided I know more about Mitochondrial Myopathy than 90% of the doctors I see.

My Neuro has finally decided that it’s time to try to do something about the ongoing pain I have in my neck, down my arm, up into my head, and in the mid back under my shoulder blade. So I had an MRI Monday. The tech really did all she could to make me comfortable, but lying still on my back on a hard surface is just something I can’t do. About half way through, the nerve from my neck going past my elbow and down to my pinky finger was causing such intense pain that I started having Myoclonic jerks – all that did was make her have to repeat one of the series – and make me lie there that much longer!

I haven’t recuperated from the MRI yet. Still feel completely worn out, plus I had another doctor’s appointment yesterday to make me even more tired. I did get some blood work done there that I’m quite anxious to see the results, compared to a year ago when they were so abnormal. I had another appointment scheduled for tomorrow, but I postponed it.

The epidural is scheduled for next week, and I’m trying really hard to remain positive about it. I had epidurals many, many years ago that gave me great relief, and I’m praying for the faith that I will get relief from the ones coming up. It usually takes several to get maximum results. My fear, that I’ve not totally overcome, is that the steroid will send me into a tailspin of weakness. That has happened to me twice in the last 10 years – once when I was on Parkinson’s meds, and last year when I had massive steroids to treat Angioedema (severe swelling of the lips and face from a drug reaction). Both of those times I was barely able to gather the strength to talk, eat, or move around at all for months afterwards. I pray I don’t have that kind of problem this time.

I do intend to continue with the series of posts I started about the various supplements I take, as it helps me to think through what the benefits to me are and understand more fully the mechanism by which they work to improve my energy.

I covet your prayers over the next week, and I pray for the faith to depend on the Great Physician, who DOES understand my disease completely!!!

Posted in Medicines and Supplements, MITO, Tests | Tagged blood tests, epidurals, Faith, God, Great Physician, MITO, Mitochondrial Myopathy, MRI, nutrition, Nutritionist, pain, weakness | 4 Replies

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