How Mitochondrial Disease affects my body

My Mitochondrial Disease has been a slowly developing condition over the last twelve years. It started with general fatigue, then affected my autonomic nervous system and then progressed on to my muscles and other organs. It seems as I adjust to a set of symptoms, something else becomes affected. There is never a dull moment in trying to figure out how to live with Mitochondrial Disease.

One of the most affected areas of my body is my pancreas. Less than 10% of my pancreas functions, and I often have pancreatitis attacks. I have had a couple surgeries on my pancreas, which has helped lessen the pain and severity of flare-ups. In general, whenever I eat, I develop bad pain in my left shoulder and gut. It sometimes feels as though someone slammed me hard into a wall and kicked me in the gut. I also have significant cramping in my pancreas. My gut becomes very bloated, and I feel like I have swallowed a balloon. Most of the time, the symptoms pass in a few hours. Sometimes, I start to develop excruciating pain, fever, vomiting and diarrhea. These more severe attacks last between one and seven days. During this time, I can only drink small amounts of water or I re-start the flare-up all over again. I have greatly modified my diet because my pancreas produces very little insulin and digestive enzymes. I eat mostly vegetables, eggs and a little bit of fruit. Once every two weeks, I eat some chicken. Although it is a challenge, I am very thankful I can still eat and am able to eat enough to maintain an acceptable weight.

Other health challenges include:
GI Tract: Gastritis, gastroparesis, chronic intestinal pseudo-obstruction, Inflammatory Bowel Disease, Celiac Disease, superior mesenteric artery syndrome, bowel obstructions

Liver: Fatty liver, high liver enzymes, high bilirubin levels (jaundice)

Brain: Encephalopathy, strokes, stroke-like episodes, seizures, migraines, dizziness, Central Diabetes Insipidus, memory loss

Nervous System: Tingling in my hands and feet, difficulty swallowing episodes, Dysautonomia=lack of function in my sympathetic nervous system which leads to the following: hyperadrenergic  postural orthostatic tachycardia syndrome (rapid heart rate in an upright position with a massive increase in the fight or flight hormones epinephrine and norepinephrine), low body temperatures, inability to tolerate hot or cold temperatures, Raynaud's disorder (hands and feet becoming very cold and turning purple), wild swings in my blood pressure from very high (hypertension) to very low (hypotension)

Muscles: weakness, pain, paralysis episodes, dystonia episodes (very painful muscle cramping/spasming), unable to coordinate movement, temporal mandibular joint (TMJ) disorder

Immune System: Pancytopenia, Mast Cell Disease, eosinophilic esophagitis/gastroenteritis/colitis, severe allergies to many things, hives, eczema

Endocrine System: Diabetes Mellitus, low renin levels, low aldosterone levels

Cardio: Inappropriate sinus tachycardia, cardiomyopathy

Eyes: Double vision, ptosis, macular degeneration, Chronic Progressive External Opthalmoplegia (CPEO)

Ears: Sensorineural hearing loss, ringing in the ears, Meniere's Disease

Respiratory System: Shortness of breath, chronic coughing

General: FATIGUE!!! Back pain, neck pain, chest pain, joint pain (osteoarthritis)

Don't kill it! That's an answer to my prayer!!!

Two weeks ago, I was yearning to go outside. I had been too sick to get out of bed for a couple days. But, as the sun was slowly descending toward the horizon, I was determined to get outside and breathe some fresh air. Unfortunately, I was in the midst of reading the Bible when I became determined to go outside. I kept thinking, oh, one more verse of Scripture and then I will get out of bed. I must have said this too many times because by the time I got outside, the sun had set and it was growing dark. I was outside only a few minutes when the following happened:

La, la, what a beautiful evening. I meandered to a tree and thought that looks like a snake (insert photo of a snake 2 feet from me). I wonder if it is alive. It looks dead the way it is lying across the decorative rocks around the tree. Oh, my! The markings and coloring on the snake look like a rattlesnake. I wonder if it has a rattle for a tail. (I cautiously look at the tail.) It is hard to tell the way the snake is positioned. I should look at the head. Yep, it definitely has a rattlesnake head. Yikes!!! A rattlesnake!!! (I quickly move away from the snake and start praising the Lord. I was so close to the snake!) I cautiously go back to the tree to see if the snake is alive. Yep, it is alive and is now all coiled up with its head poised ready to strike. Wow, and it blends right in the the rocks too! Praise be to God I saw the snake when I did! Snakes come out in the evening. I have seen some on the roadways always after the sun sets. I now know not to go out into the yard after the sun sets. There are definitely snakes around!

A few days ago, I was thinking about how I dislike rattlesnakes. Then, a thought popped in my head. Without rattlesnakes, there would be lots of mice around, and mice are a HUGE headache! They get between the walls, into the attic, into any nook and cranny. Ah, yes, Lord keep the rattlesnakes around to eat up the mice. Then I remembered there are black snakes which eat rattlesnakes. I sent up a quick prayer, "Oh Lord. Since we need the rattlesnakes to eat the mice, could you send a black snake to the area to eat the rattlesnakes?"

This morning, my dad saw a black snake slither from the driveway into the edge of the yard. As soon as I heard this, I exclaimed, "Don't kill it! That's an answer to my prayer!" I then explained black snakes eat the rattlesnakes and rattlesnakes eat mice. So, don't kill anything. God is taking care of it all!

I Thirst...

With diabetes insipidus, my body does not produce enough anti-diuretic hormone (ADH). Low levels of ADH means my body does not concentrate fluids. Whatever I drink is almost instantly filtered out by my kidneys and dumped into my bladder. Even if I am dehydrated, my body continues to rid my body of fluids. With this said, I am constantly thirsty and have to be diligent about not going too long without fluids, or I become dehydrated. I always feel thirsty and thinking about water is not far from my mind. If I hear water dripping from a faucet or a toilet flush, I think, "Oh, how thirsty I am! I need to drink some water."

When going to church, my body is very thirsty from a night of dehydration. I yearn to drink a liter or two of water, but with all my willpower, I resist. If I start drinking fluids, it is very hard to stop. Also, once I start drinking fluids, I have to constantly go visit the restroom. So, I try to only sip water here and there and try very hard not to think about water.

This all goes very well until the sermon is on a very common theme in the Bible, thirsting for God's water. I try very hard to sit still and not lick my chapped, dehydrated lips. I try hard not to tear off the cap of my water bottle and guzzle down its contents. Oh, but I am so thirsty!!! As I am thinking these thoughts, I realize the point of Jesus' words, "Whosoever drinks of this water shall thirst again: But whosoever drinks of the water that I shall give him shall never thirst; but the water that I shall give him shall be in him a well of water springing up into everlasting life" (John 4:13-14). Oh yes! How true those words are! No matter how much water I drink, I am thirsty a few minutes later. But the joy and comfort I have with having a relationship with Jesus carries me through each week, each day each hour.

I usually read or study the Bible 1-2 hours per day. I find Scripture provides so much wisdom and insight into my life. When I do not read the Bible, I often feel off-balanced. I am more apt to get angry or be inconsiderate and forget that I too am a habitual sinner. This spring, I had a very chaotic life. When I had time to read the Bible, my eyes were heavy with sleep. Often only a verse or two would fill my head before sleep took hold. I found myself clinging, grasping for any Scripture I could remember. If I had a moment to read one verse of Scripture, I would repeat it over and over again in my head. I crave God's Word. One verse never seemed to be enough. I wanted to tear open the Bible and read, but that option was not available to me. During this time, I understood what it was to be thirsty for God's Word. I understood what a luxury it is to have my own Bible and to be able to read it at my leisure. Due to persecution, so many Christians around the globe must hid their Bibles and read secretly. Others simply do not have access to their own Bibles. 

Since this time, I try to treasure every moment I am able to read or hear God's Word. Although I might always be physically thirsty, with Jesus I have the precious gift of everlasting water. So my friend, if you do not know Jesus, I ask that you take His invitation, "Let anyone who is thirsty come, and let the one who wishes take the free gift of the water of life" (Revelation 22:17).

A Tribute to David

In the midst of celebrating Mitochondrial Awarenees Week, I am deeply saddened to learn a very, very dear Mito Warrior passed away this morning. Oh how my eyes weep and my heart breaks as I cope with the news.

I was just thinking about my friend David last week. Ah, yes, I really need to write him an email and check in to see how he is doing. It has been far too long since we last chatted. These thoughts floated through my mind, but like so many good intentions, the thoughts never materialized into actions. So, in addition to losing a friend, I also must face the negligence of my own actions. He will never know how much I deeply loved and cherished his friendship.

David was one of the first people I met after becoming severely debilitated with Mitochondrial Disease. He was a ray of sunshine in a world of very little knowledge about Mitochondrial Disease. We frequently wrote emails. He had suffered with Mito for a long time and had so much knowledge about what helped and how to adapt one's life to Mitochodndrial Disease. He was a brilliant scientist and found an amazing link between taking low doses of Benadryl and symptom improvement in Mitochondrial Disease and associated conditions such as MS, Parkinson's and Alzheimer's. Unfortunately, the scientific world did not care to learn of his incredible findings. His research did not reveal a new drug, only taking low doses of a cheap over-the-counter medicine.

By God's incredible grace, this vital piece of information lead me on my own journey. I took David's findings and started investigating why Benadryl was making a difference in people's symptoms. I soon stumbled upon mast cells and their role in so many illnesses. I soon learned about histamine and its ability to create havoc in one's body. I started learning about ways to control mast cells and control histamine in my body. This tremendously changed my life. I started taking mast cell stabilizers and using Benadryl in crisis situations. My Mitochondrial symptoms were stabilized and became much easier to predict and cope with.

Perhaps it is very selfish to think how my life might have been if I had never known David. But, he has been such a blessing in my life. He always took time to answer questions and to share all his own experiences. I pray the family is able to find comfort in this time of sorrow. Their beloved David was such a treasure and invaluable resource to so many people. Although the words from the email I wanted to write David will never reach David, perhaps I can still be of use and provide comforting words to David's family and friends.

"Fulfill my joy, that you be like-minded, having the same love, being of one accord, of one mind. Let nothing be done through quarreling or pride; but in lowliness of mind let each esteem others better than themselves. Look not every man on his own things, but every man also on the things of others. Let this mind be in you, which was also in Christ Jesus" (Philippians 2:2-5).

Waiting...that's what we do!

Hello. I apologize for the lack of blog entries lately. I am trying to keep publishing posts, but my health is challenging me. I have been having significant chest pain and shortness of breath since February. I do not enjoy going to the doctor, but my symptoms were burdensome. I attempted to get an appointment with a doctor. I found out one of my "old" doctors was again practicing medicine, but she had changed medical facilities. I thought, how wonderful! I can call and get an appointment to see her. Whoa! Not so easy. I was informed, in order to see my old doctor, I had to schedule an appointment with Doctor D. If Doctor D thought my case was appropriate, she would refer me on to my old doctor. Ok, let's go see Dr. D! Not so fast! Dr. D requires the patient to be referred by a primary care physician. Upon reviewing the medical chart and referral, Dr. D will decide if she will see you as a patient. Well, I guess if that is what I have to do, let's do it! When can I get an appointment to see Dr. D? After being referred and the doctor decides to accept you as a patient, it takes 9-10 months to get an appointment. Ok, stop the program. This is nonsense!!! I do not want to wait a year to see a doctor who "might" refer me on to my old doctor. Why is it so hard to see my doctor!?

My experiences with doctors has been comical. Every time I get a doctor able to treat me, he/she leaves the medical facility. A couple doctors did everything he/she could and then referred me on to other specialists. Two doctors moved across the country to practice at another major medical facility. One doctor quit seeing patients to teach medicine at a medical school. Another stopped seeing patients to pursue research endeavors. Many times, I am often told to go back to my primary care physician. She often laughs because my primary care physician feels very under-qualified to treat me. She has often quipped, "The whole reason I referred you to this specialist is for the fact that I have no idea how to provide medical treatment to you. How am I more equipped now to treat you than I was before referring you?"

Now, my symptoms have come to a tipping point. Fatigue, chest pain and shortness of breath are consuming my life. If it difficult to lie flat because I feel like I constantly have to cough. If I am not lying flat, if I do too much movement, I start gasping for breath. This often leads to coughing fits. Now, I have again sought to find a medical doctor. I found a specialist who recently moved to my area in March. He is accepting new patients. I recently changed health insurance companies. Once my insurance gets all settled, I will be on my way to hopefully getting a referral to see this new doctor. Until then, I keep on waiting...it's what the chronically ill do!

What is Mitochondrial Disease?

This week is Mitochondrial Awareness Week! In celebration, here is a short summary of what Mitochondrial Disease is.

Every cell in your body needs energy to function. Every cell (except red blood cells) in your body has little power factories called mitochondria which manufacture energy. Mitochondrial Disease is a condition which affects the tiny power houses inside your cells. When your mitochondria become damaged, your ability to produce energy is affected.

Since all cells in your body need energy, Mitochondrial Disease can affect every part of the body. Some folks have the disease affect their muscles (called Mitochondrial Myopathy). Some folks have their brains affected (called Mitochondrial Encephalopathy). Many people have multiple body systems affected. Some people have every organ in their body affected. The disease varies greatly depending on the number of organ systems involved and the severity of the mitochondrial impairment.

Mitochondrial Disease can manifest at any age. In general, the younger a person develops symptoms of the disease, the shorter one's lifespan. For example, a one year old who shows signs of Mitochondrial Disease often does not live beyond age four. A person who develops the disease in their 40's may live a full life and die from other causes.

There is no cure for Mitochondrial Disease. There are vitamins, minerals and other supplements which can be taken to help alleviate deficiencies caused by the disease. For more information, please visit www.umdf.org

Supplements: Allergies and Mast Cell Stabilizers

Quercetin: Quercetin is a natural anti-histamine and an anti-inflammatory, making it effective for lowering the effects of seasonal and food allergies plus asthma and skin reactions. Histamines are chemicals that are released when the immune system detects an allergy or sensitivity, and they are what account for uncomfortable symptoms we face whenever the body has an allergic reaction.
Quercetin can help stabilize the release of histamines from immune cells, which results in decreased symptoms like coughs, watery eyes, runny noses, hives, swollen lips and indigestion.
Bromelain: Bromelain helps modulate the entire immune system. It can prevent allergies by addressing the root cause –-a hyperactive, over-sensitive immune system. Additionally, because bromelain is an enzyme that specifically digests proteins, it has been found to help your body digest food and absorb nutrients more efficiently, as well as being extremely effective at healing issues in the gastrointestinal tract.

Stinging Nettle: Stinging nettle’s anti-inflammatory qualities affect a number of key receptors and enzymes in allergic reactions, preventing hay fever symptoms. I take stinging nettle daily to help modulate my over-active immune system and have had great success with a large reduction in hay fever symptoms.

Sodium Cromolyn (Nasal Spray): Cromolyn is a mast cell stabalizer, meaning it prevents mast cells from releasing histamine. With mast cell disease, mast cells inappropriately dump their contents (histamine) into the body. By stabilizing the mast cells, the mast cells are unable to release histamine and thus prevent the formation of histamine-related symptoms. The nasal spray works within 5 minutes. It is the best medicine I have found to help with mast cell issues and to get rid of a chronic stuffy/runny nose and upper respiratory phlegm.

Ketotiferin Fumarate (Eye Drops): Ketotiferin is another mast cell stabilizer. Works in the same fashion as Cromolyn. It is very effective at getting rid of itchy eyes and also helps clear up nasal symptoms as well.

Supplements: Eye Health

Zinc: High levels of zinc are found in the macula, part of the retina. Zinc enables Vitamin A to create a pigment called melanin, which protects the eye. Some studies show that getting enough zinc can help you see better at night. Zinc along with other supplements listed on this page help lower the risk of macular degeneration by up to 25%. Zinc has many benefits. For example, if you have a cold, take zinc to aid your body's immune system in fighting off the illness.

Zeaxanthin: The retina contains two carotenoids, lutein and zeaxanthin, with the greatest concentration at the center called the macula. Within the macula, zeaxanthin is the dominant component, up to 75% of the total, whereas in the peripheral retina, lutein predominates, usually being 67% or greater. Studies show that Zeaxanthin increases low macular pigment levels, which is a leading risk factor for macular degeneration. Zeaxanthin protects eyes from harmful blue light found in sunlight and many electronic screens.

Lutein: Called the eye vitamin, lutein is one of two major carotenoids found as a color pigment in the human eye (macula and retina). It is thought to function as a light filter, protecting the eye tissues from sunlight damage. Many eye disease such as cataracts, retinitis pigmentosa and macular degeneration may be decreased in individuals taking a daily lutein supplement.

Bilberry: A relative of the blueberry, bilberry has seen used for hundreds of years especially in Europe. During World War 2, British pilots noted that eating bilberry jam before flying dramatically improved their night vision. Bilberry is a powerful antioxidant which does many amazing things including increasing retinal pigments to allow the eye to tolerate light. There has been extensive studies which show bilberry improves night vision, slows down macular degeneration, and prevents cataracts and diabetic retinopathy.

Short-cut Cooking

With having a chronic medical condition, I am always trying to conserve energy. One area in which a lot of energy can be expended is cooking. Over the years, I have found ways to eat delicious food without spending much time or energy in the kitchen. Here are some ways I prepare food.

Buy a whole chicken and roast it in the oven. Put some frozen veggies in the bottom of a roasting pan, add the chicken and place the pan in the oven. Roast for about an hour at 350 degrees F (during which time, I often take a nap). I often try to fill my oven up. So, I add wrap a potato in aluminum foil along with a maybe a sweet potato, beet and/or kohlrabi. When everything is done, enjoy a feast. I try to make more food than I plan to eat. I put the leftovers in the fridge. I either eat the leftovers cold or pop them back in the oven for about 20-25 minutes to warm them back up.

The chicken can be made into multiple meals. After eating the hot roasted chicken, you can take the chicken and make a sandwich with it--maybe adding some mayo, lettuce, cheese, etc. to it. You can also put some pasta into boiling water and make a fast alfredo. While the pasta is cooking, break up the chicken meat and place it into a pan on the stove with alfredo sauce from a jar. When the pasta is cooked, drain the pasta and put the chicken alfredo sauce on top of the pasta. Another option is breaking up the chicken and placing it on a bed of salad greens. Add in some baby carrots, cherry tomatoes, sliced mushrooms, shredded cheese and salad dressing for a delicious meal. Another favorite is breaking up the chicken and mixing it with mayo. Then place the chicken mixture on crackers. To mix up the flavor of the chicken, you can add BBQ sauce, honey mustard, herbs, seasonings or Italian dressing to create all new flavors.

Another great cooking method is using a slow cooker. Place meat (chicken, beef, pork, lamb) into the bottom of the cooker. Add vegetables such as baby carrots, peas, small potatoes and a sliced up onion. Cook on medium for about 6-8 hours. When the meat is tender, enjoy a delicious meal. Leftovers can be enjoyed by themselves or by making rice or pasta and placing the meat and vegetables over them and using the drippings in the bottom of the slow cooker for a sauce.

Other fast foods are buying frozen vegetables or small vegetables such as baby carrots and small (new or red) potatoes. Place the veggies in a pan of water on the stove. In about 15-20 minutes they will be cooked. Drain the water and enjoy. I also buy as many things as possible which do not require preparation--sliced mushrooms, apples, pears, berries, salad greens, yogurt, cottage cheese. These foods are ready to eat and do not require any energy to prepare.

Hard boiled eggs are also another easy food. Place a pan of water on the stove. When the water boils, add eggs to the water. Cook for about 10 minutes. Immediately drain and rinse with cold water. I either eat the eggs by themselves or add them to a salad. I often under cook the eggs, so that the egg yolks are soft. When the eggs are soft, you can smash the eggs on bread or toast and create a delicious sandwich. Put the egg on an English muffin and add ham and jam...it tastes like an egg McMuffin!

One of my favorite foods is plain yogurt. I buy fresh or frozen fruit (blueberries, cherries, strawberries, etc.) and create delicious breakfast or dessert treats. You can add in other toppings such as caramel sauce, chocolate sauce or granola to make an extra special treat.

There are many other ways to make good food without exerting a lot of energy. Try new flavors, new foods and do not be afraid to experiment. Happy eating!

Supplements: Anti-oxidants

With chronic illness, the body has many free radicals which build up in the body and damages cells. Anti-oxidants scavenges up the radicals and helps the body eliminate them.

N-Acetyl-Cysteie (NAC): One of the most powerful and beneficial anti-oxidants around! NAC is used by the body to regenerate glutathione (a very powerful anti-oxidant). NAC regulates genes which link oxidation stress to inflammation. NAC helps reduces mucus in the lungs, especially helpful for those with cystic fibrosis and chronic pulmonary disease. NAC improves insulin sensitivity, fights H. pylori (stomach ulcers), blocks many of the steps needed for a cell to turn into cancer and can prevent the development of many common illnesses such as colds and flus.

Selenium: works well with Vitamin E. Selenium is needed for thyroid function. The immune system also needs selenium. Many people with asthma have lower selenium levels; selenium supplementation may help reduce asthma symptoms.

Vitamin E: It is necessary for skeletal, cardiac and smooth muscle. It helps with Vitamin A,Vitamin K, iron and selenium storage. It has a positive effect on the immune system. It helps prevent cell damage by scavenging up free radicals. If you take vitamin E, please take it with fat as it needs fat to be absorbed by the body.

Supplements: B Vitamins

In general, taking a B-complex vitamin is best. However, there may be conditions in which taking a single B vitamin might aid in a particular case.

B1 (Thiamine): Needed for carbohydrate metabolism. Thiamine is needed in the body to produce ATP (energy). Thiamine is often low in folks suffering from digestive disorders such as Crohn's Disease.

B2 (Riboflavin): Excellent for decreasing headaches. Since B vitamins are water soluble, B2 needs to be taken multiple times a day to help with chronic headaches. Caution, excessive B2 intake causes one's urine to turn a bright yellow color. Do not worry. It is just the riboflavin passing through the urine.

B3 (Niacin): Niacin helps improve circulation and suppress inflammation. Folks with high cholesterol and/or high blood pressure might seek out taking niacin. Niacin causes vasodilation (enlarging of the blood vessels). Larger blood vessels will lead to lower blood pressure. Also, larger blood vessels will allow blood to flow more freely in arteries narrowed by cholesterol build-up. (If you want to decrease cholesterol build-up, please decrease your sugar consumption. Sugar is a crystal structure. When too much sugar is consumed, it hangs out in the blood vessels. The sharp sugar crystal edges tear the blood vessel lining. The body repairs the damaged blood vessels by producing cholesterol. Over time, more and more cholesterol is deposited in an effort to repair the blood vessel. Unfortunately, this large build up of cholesterol often leads to blocked blood vessels which lead to heart attacks and strokes.)

B5 (Pantothenic Acid): B5 is essential in producing red blood cells as well as hormones made in the adrenal glands. B5 also helps the body use other B vitamins.

B6 (Pyridoxine): B6 is involved in the process of making serotonin and norepinephrine, which are chemicals that transmit signals in the brain. Vitamin B6 is also involved in the formation of myelin, a protein layer that forms around nerve cells.

B7 (Biotin): It is also called Vitamin H. Your body needs biotin to metabolize carbohydrates, fats and amino acids, the building blocks of protein. Biotin is often recommended for strengthening hair and nails, and it's found in many cosmetic products for hair and skin.


B9 (Folic Acid):  Folic acid is crucial for proper brain function and plays an important role in mental and emotional health. It aids in the production of DNA and RNA, the body's genetic material, and is especially important when cells and tissues are growing rapidly, such as in infancy, adolescence, and pregnancy. Folic acid also works closely with vitamin B12 to help make red blood cells and helps iron work properly in the body. Vitamin B9 works with vitamins B6 and B12 and other nutrients to control blood levels of the amino acid homocysteine. High levels of homocysteine are associated with heart disease. However, researchers are not sure whether homocysteine is a cause of heart disease or just a marker that indicates someone may have heart disease. It is fairly common to have low levels of folic acid. Alcoholism, inflammatory bowel disease (IBD), and celiac disease can cause folic acid deficiency. Also, certain medications may lower levels of folic acid in the body.

B12 (Cobalamin): B12  has a key role in the normal functioning of the brain, nervous system and the formation of red blood cells. It is one of eight B vitamins. It is involved in the metabolism of every cell of the human body, especially affecting DNA synthesis, fatty acid and amino acid metabolism.

Supplements: Energy Increasers

As a follow-up to my supplement overview post, here is a list of a few supplements which help increase the body's ability to produce energy.

Co Q10: This supplement is so crucial for anyone with energy deficiencies. This supplement helps give your body the needed building block to produce energy. The organs most benefitted by Co Q 10 are those with the highest energy needs--heart, liver, brain, etc. The supplement is available in liquid and pill form. The liquid form is absorbed quickly and is handy to take when in the midst of an energy crisis. Also, if you are taking a statin drug, please consider taking CO Q10. Statins starve the body of CO Q10 and can cause metabolic diseases such as mitochondrial disease.

Acetyl-L-Carnitine: This is my wonder drug! Acetyl-L-Carnitine (ALCAR) is used in the mitcohondria to shuttle fatty acids into the mitochondria for energy use. Many folks with mitochondrial disease  have an inability to shuttle glucose into the mitochondria to make ATP (energy). The use of fatty acids is an essential way for cells to make energy and avoids the defective glucose energy process. For me, ALCAR affects my heart the most. ALCAR greatly lessens the debilitating chest pain and lessens the severity of my postural orthostatic tachycardia (elevated heart rate when not lying down).

Vitamin B-Complex: The B vitamins are essential in energy production. All B vitmanins convert food (carbohydrates) into fuel (glucose). Although you can take the B vitamins separately, it is best to take a B-complex since all the B vitamins are used in energy production. There are various B-complex strengths. In general, B-100 has a good dose of all the B vitamins.

Against Thee, Thee only have I sinned

Today, I feel so blessed to have been able to go to church. Yesterday I was not feeling well, and this morning felt like a Herculean effort to get out of bed...but I did! Pastor this morning preached on one of my favorite psalms, Psalm 51. This psalm is the confession of King David about his sin (having an adulteress affair with Bathsheba and then having Bathsheba's husband killed when Bathsheba becomes pregnant). I love how the psalm is so honest. I cannot imagine writing a confession to my biggest sin and then having that confession passed around from generation to generation and from century to century...but that is exactly what Psalm 51 is.

My favorite line in the psalm is found in verse 4, "Against Thee, Thee only have I sinned." (Thee in this verse of Scripture is referring to God.) I have thought about this verse probably more than any other. When we sin, our sin affects our lives and others, but ultimately, the only person we sin against is God. Lie, steal, cheat, spread rumors--sure they all affect other people, but God is the one who we really sin against. He made the universe and all the rules. When we break His rules, it is as if we spit in His face. When we sin, we say with our actions, "I am not going to follow your rules! Who do You think You are!?" Unfortunately, when we become disobedient, He cannot reward us.

I am reminded of buying a gift for a child. I was so excited to give it to the little boy. Oh, what joy and happiness this was going to bring for this cute little lad. I looked forward for many days to see the smiles, laughter and gleeful reaction of the little boy upon receiving the gift.When the day came to give the toy to the child, he was throwing a tantrum--slapping, hitting and kicking people and screaming. My heart broke. I could not give the child the toy in the midst of his unruly behavior. I had to turn away my joy and blessing from this boy and let him continue on his path of self destruction.

I can only imagine that this same situation happens to God. He has some wonderful gift He wants to give us, but He cannot because we are misbehaving. We think no one will know our sin, and no one will be hurt if we sin. Oh, how wrong we are! God knows when we sin, and when we sin, we take away our own blessings. If only we would stop and consider that when we sin, it is against God we are sinning. How different our behavior might be! And how many wonderful blessings might God be able to bestow upon us if we sinned less?

Supplements: An Overview

There has been a lot of interest in the supplements I take for my various conditions. I have decided to write several posts on the different supplements. I will try to divide the supplements into several categories to help give order to them.

In general, always consult your medical team before taking anything. Most medical professionals know very little about most supplements. I have had some support and some resistance in taking the various supplements. If a doctor is familiar with Mitochondrial Disease, I have had more support and sometimes even suggestions on which supplements to take. Always ask for advice. If you have support, take it. If you encounter no support or resistance, do your own research and seek out others familiar with supplements.

Some general guidelines:
Not all people respond the same to all supplements. Some people have great success with Co Q-10, while others may see no difference in taking the supplement. If something does not work, move on to something else.

Be patient. Some supplements may take a month (or more) to see the benefits. In general, supplements will not give instantaneously relief. They often take time to work. 


DO NOT TRY MULTIPLE SUPPLEMENTS AT ONE TIME! This is a big mistake people make. They get excited about supplements and decide to try three different supplements at one time. Do not do this! Try one supplement for about 3-4 weeks, making notes if any symptoms are better/worse. After this time, you can choose to continue/discontinue with the supplement and/or start taking a new supplement. If you try more than one supplement at a time, it is difficult to know if the improvements in your symptoms are from supplement A or B. It can save a lot of time and money if you start by taking one supplement at a time.

Not all supplements are create equally. Supplements purchased at the grocery store, in general, use inferior ingredients and often are coupled with many binders and fillers. Seek supplements from reputable companies. A very good company is GNC. In general, the GNC brand supplements use good quality ingredients. Sign up for their email promotions and receive emails on their sales. Most of their supplements can be purchased for 50% or less of the regular listed price if you shop their sales.

There are many other supplement companies. I have had good and bad experiences. Some companies have endless different combinations of their products. If more than one supplement is effective, using the combination supplement can help reduce the number of pills to swallow. In general, I tend to stay away from most combination supplements. The combinations in the supplements are often not in the ratio I need. Also, buying the supplements individually allows me to increase/decrease dosing for each supplement if my symptoms change.

Some companies have the same product with various quantities of pills in the bottle. Occasionally, if you switch the quantity in the bottle, the supplement may be different. Sometimes, companies use several manufacturers to produce their products. Supplement A with 30 pills in the bottle might be produced by one manufacturer and Supplement A with 100 pills might be produced by another manufacturer. Different manufacturers may use different ingredients and often use different quality of ingredients. This can lead to different efficacies of the same supplement sold by the same company. Always check the product label ingredient list for every supplement.

Most importantly, read product reviews before purchasing anything. Reviews can be very helpful in deciding what to purchase. Read the good and bad reviews and use them as a guide in helping you purchase the best supplement for your health requirements.

The building of a new house

I gaze out my window across the open space to a new home which is being constructed. I watch with amazement as a piece of grassy field is turned into someone's lovely home. First the land was cleared. Next the foundation was poured. Quickly the house was framed, and the roof was being constructed. I love to watch the workers. They work so quickly and rely on each other as part of a team.

I must confess, I stopped watching the men work as they constructed the roof. With no safety equipment, the men on the ground would throw sheets of plywood to a guy on the roof. The guy on the slanted roof would run to catch the wood. My heart nearly stopped a few times as the man caught the wood, wobbled backwards as the weight of the wood pulled him toward the ground, before the man recovered his balance. I pray often for these men. And when I see the guys do really unwise things, I pray even harder.

"Oh, Lord, why are we so dumb? Why do we act without thinking? Why do we think we are invincible? Thank You for giving us balance to keep us from falling. Thank You for giving us muscles to give us strength. Thank You for Your Son, Jesus, who gives us hope in a very chaotic world. 'In Him we have redemption through His blood, the forgiveness of sins, according to the riches of His grace' (Ephesians 1:7). Praise be to You! Amen."