"I am always doing what I cannot do yet, in order to learn how to do it." (Vincent Van Gogh)
The DOCTOR YOURSELF NEWSLETTER (Vol. 4, No. 13, June 5, 2004) "Free of charge, free of advertising, and free of the A.M.A."
Written and copyright 2004 by Andrew Saul, PhD, of http://www.doctoryourself.com , which welcomes a million visitors annually. Commercial use of the website or the contents of this Newsletter is strictly prohibited.
MUSCULAR DYSTROPHY Some Nutritional Aspects
Everybody knows what muscles are, and when they don't work, the weakness, frailty and incapacity of a little child with muscular dystrophy makes for many a poignant poster and tearful telethon. "There is no treatment... there is no specific therapy," says the Merck Manual. The National Institutes of Heath says the same thing: "There is no specific treatment for any of the forms of MD." http://www.ninds.nih.gov/health_and_medical/disorders/md.htm , accessed April 2004)
Such despairing, autocratic but research-friendly pronouncements must not be seen as the last word until we adequately weigh in maternal and fetal malnutrition as a fundamental cause of muscular dystrophy. The good news (to be considered further below) is that if nutrient deficiency can cause an illness, nutrient therapy may ameliorate, or even cure, that illness.
Malnutrition causes muscular dystrophy? The short answer is, Yes. "Dystrophy: 1. Defective nutrition. 2. Any disorder caused by defective nutrition." (American Heritage Dictionary of the English Language, p. 407.) When we consider all this means, we are poised to head down a steep slope. Nothing gets you into the emotional soup faster than being perceived as blaming a baby's birth defect on the mother's diet. Truly, it is very difficult to know for sure if a birth defect is the result of genetics or environmental factors. The mother represents half of a developing baby's heredity, but almost all of the developing baby's environment. Every single cell in a baby is the product of inherited DNA instruction. But every single cell in a baby is also the product of the mother's diet.
"Dinner Table Heredity" Ova (human eggs) are formed during the fetal stage of a female's life. In other words, all of a woman's own eggs are actually formed while she was developing inside her mother, before she herself was born. Wow. This means that what your grandmother ate significantly contributed to your anatomy. Think that one over: What looks to be purely a genetic problem may in fact be a largely a nutritional one. I call this "Dinner Table Heredity." Just because a problem comes out of the womb does not mean that that problem is genetic and only genetic. Science has known for decades that many a specific birth defect is a direct result of a specific vitamin deficiency.
Hillemann HH. (1956) "Maternal Malnutrition and Fetal Prenatal Development Malformation" (Address at Oregon State College, November 9)
Hillemann HH. (1958) "Maternal Malnutrition and Congenital Deformity" (Grants Pass Oregon Address, March 17)
Hillemann HH. (1961) "The Spectrum of Congenital Defect, Experimental and Clinical" Journal of Applied Nutrition 14:1,2.)
Spina bifida, now well-known to be caused by a lack of folic acid (folate), is an example. I personally was born with a slight degree of spina bifida. I do not blame my mother; I might blame those who wrongly advised her about her pregnancy diet. I most certainly blame the food processing industry for systematically milling away the B-complex vitamins from her daily bread, and I blame the government for letting them get away with it.
Unlike spina bifida, muscular dystrophy may be reversible. However, MD is probably not a matter of simple malnutrition, for it often does not respond to low-dose nutrient therapy. But it may respond to high-dose nutrient therapy, and may therefore be what orthomolecular physicians call a "genetotrophic" disease.
GENETOTROPHICS The important interrelationship between food and the genes was first called the "genetotrophic concept" by Roger J. Williams, PhD. Dr. Williams, the discoverer of the B-vitamin pantothenic acid, has explained in his books and scientific papers how existing biochemical birth defects may be effectively overcome with optimum nutrition. ( http://www.doctoryourself.com/biblio_williams.html ). See especially (and note the date):
Williams RJ. Muscular dystrophy and individual metabolic patterns: The possibilities of a nutritional therapeutic approach. Proc. of the First and Second Medical Conferences [1951-1952] of the Muscular Dystrophy Assoc. of America, 118-22 (1953).
Williams RJ. Beerstecher, E., Jr. and Berry, L. J., "The Concept of Genetotrophic Disease," Lancet, February 18, 1950, 287-90.
Williams RJ. "Concept of Genetotrophic Disease," Nutr. Rev., 8, 257-60 (1950).
Williams RJ. "The Unexplored Field of Genetotrophic Disease," MD, 6, 123-4, 136 (1951).
Williams RJ. and Rogers, L. L., "The Formulation of a Genetotrophic Supplement for the Experimental Treatment of Diseases of Obscure Etiology," Texas Reports Biol. Med., 11, 573-81 (1953).
In genetotrophic diseases, genetic abnormality leads to nutritional disability. To compensate, the body requires the availability of larger than normal quantities of one or more nutrients for the affected gene to successfully express itself. For that particular person, normal dietary vitamin intakes are quite inadequate for normal function. It is a bit like trying to take a hot bath with the drain open: it can be done, but you are going to need a lot more hot water.
I think muscular dystrophy may constitute a good example of a genetotrophic disease. This also goes a long way to answering the perennial parents' question as to how one child can be healthy while the sibling is afflicted with MD. . . when Mom ate pretty much the same diet during both pregnancies. There may be both a genetic component and a nutritional component. Rather than a nutrient deficiency, MD may more exactly be considered to be a genetically-influenced nutrient dependency.
IS THERE A WAY OUT?
To a family with a child with muscular dystrophy, it must seem like the worst form of Monday Morning Quarterbacking to say what might have caused the disease their child already has. Coulda, shoulda, woulda is poor compensation for the parents of a disabled child, and to discuss it is to invite after-the-fact feelings of guilt and helplessness. So the real question is, To what extent might individual nutrients enable the sufferer to overcome the existing condition? There is considerable good news, and all of it is nutritional.
By now, CoQ10 (umbiquinone) should probably be accepted as a vitamin. Many other vitamins are coenzymes. CoQ10 is found in very tiny quantities in foods. Most young people make CoQ10 in their bodies, but a youngster with muscular dystrophy may either make too little or have a bigger requirement because of the illness.
It has been established that heart muscle greatly benefits from CoQ10 supplementation, resulting in improvement in cases of congestive heart failure and even cardiomyopathy. Striated cardiac muscle and striated voluntary (skeletal) muscle are not that dissimilar. Furthermore, Folkers et all write that:
"Cardiac disease is commonly associated with virtually every form of muscular dystrophy and myopathy. . . The rationale of this trial was based on known mitochondrial myopathies, which involve respiratory enzymes, the known presence of CoQ10 in respiration, and prior clinical data on CoQ10 and dystrophy. These results indicate that the impaired myocardial function of such patients with muscular disease may have some association with impaired function of skeletal muscle, both of which may be improved by CoQ10 therapy. . . CoQ10 is the only known substance that offers a safe and improved quality of life for such patients having muscle disease." (Folkers K, Wolaniuk J, Simonsen R, Morishita M, Vadhanavikit S. Biochemical rationale and the cardiac response of patients with muscle disease to therapy with coenzyme Q10. Proc Natl Acad Sci U S A. 1985 Jul;82(13):4513-6.)
Because CoQ10 is so absolutely vital to muscle cells, involved with growth control, cellular energy production, and other essential life functions, it warrants special consideration for persons with muscular dystrophy.
In two placebo-controlled, double-blind trials, 100 mg CoQ10 daily resulted in "definitely improved physical performance" in patients with muscular dystrophies and atrophies. "In retrospect," the authors wrote, "a dosage of 100 mg was too low although effective and safe." But even at this low dose, their conclusion was emphatic: "Patients suffering from these muscle dystrophies and the like should be treated with vitamin Q10 indefinitely."
(Folkers K ; Simonsen R (1995) Two successful double-blind trials with coenzyme Q10 (vitamin Q10) on muscular dystrophies and neurogenic atrophies. Biochim Biophys Acta 1271(1):281-6. May 24)
I submit that 300-600 mg/day would be a more effective dose, especially for an older MD child. For most families, the limiting factors will be cost or medical disapproval. Even pricey supplements are cheaper than most drugs. And as there are no harmful side effects with CoQ10, it is inexcusable to NOT give it a serious therapeutic trial.
Let's be fair: If CoQ10 is important to rabbits, might it also be important to children? (Boler JB, Farley TM, Scholler J, Folkers K. Deficiency of coenzyme Q10 in the rabbit. Int Z Vitaminforsch. 1969;39(3):281-8.)
Like CoQ10, vitamin E is an antioxidant. There is a long history of scientific suspicion, to this day largely untested, that antioxidants are of unusual benefit to individuals with muscular dystrophy. Linus Pauling wrote about muscular dystrophy, both experimental and hereditary, in How to Live Longer and Feel Better. Dr. Pauling's comments are here reprinted with permission of the Linus Pauling Institute, Oregon State University:
"It was recognized more than fifty years ago that a low intake of E leads to muscular dystrophy, a disorder of the skeletal muscles characterized by weakness similar to that caused by a deficiency of vitamin C (the studies of vitamin E and muscular dystrophy have been discussed by Pappenheimer; 1948). . . Several kinds of hereditary muscular dystrophies are known. For the most part their nature is not thoroughly understood, and there is no specific therapy recommended for them. Myasthenia gravis is treated by inhibitors of cholinesterase, corticosteroids, and surgical removal of the thymus gland. The medical authorities do not mention the possible value of vitamins in controlling muscular dystrophies. The evidence about the involvement of vitamin E and vitamin C as well as B6 and other vitamins in the functioning of muscles suggests that the optimum intakes of these nutrients should be of value to the patients. So far as I know, no careful study of an increased vitamin intake for patients with hereditary muscular dystrophy has been reported." (p 160)
With the exception of the CoQ10 studies referenced above, Dr. Pauling's statement of 20 years ago, unfortunately, still pretty much stands. I found a couple of studies, one with 15 patients using vitamin E and selenium reporting "minimal" benefits (Backman E, Henriksson KG. Effect of sodium selenite and vitamin E treatment in myotonic dystrophy. J Intern Med. 1990 Dec;228(6):577-81.) and another with 16 patients, showing "slight" benefit. (J Child Neurol. 1986 Jul;1(3):211-4. A trial of selenium and vitamin E in boys with muscular dystrophy. Gamstorp I, Gustavson KH, Hellstrom O, Nordgren B.)
I think they would have obtained far better results if they had used larger doses of selenium, much larger doses of vitamin E, and only the natural form of vitamin E.
One study, using 600 mg of vitamin E and a relatively high amount of selenium (4,000 mcg Na2SeO3), got very good results in all five patients studied. "All improved their grip strength. . ., two normalized their gait, another two can now sit down on their heels and stand up, one patient can now walk on his toes, one can now get up from lying on the floor without using a chair and two patients have improved their physical capacity. . . No side-effects were observed." (Orndahl G, Sellden U, Hallin S, Wetterqvist H, Rindby A, Selin E. Myotonic dystrophy treated with selenium and vitamin E. Acta Med Scand. 1986;219(4):407-14.)
This is, at the very least, genuinely encouraging.
Why no new, large-scale studies of high dose selenium-vitamin E therapy? Because drugless therapy is ignored by drug companies, and consequently remains unpromoted and unknown to physicians. There is no money in products that cannot be patented. Children learn at an early age that mud pies don't sell. No investment is made, no research is done where there is no money is to be recovered. Drug companies do not expect to find, nor do they want to find, a cure that does not involve a drug. A tragic example is modern medicine's approach to muscular dystrophy.
No doubt Jerry Lewis is a great guy and his heart is in the right place. But he may have unwittingly set the cause of health science back a generation. Telethons to raise cash for drug research for muscular dystrophy are expensive anachronisms. They are just re-inventing the wheel, and they're building it wrong to boot. Remember: "Dystrophy" means "malnutrition." There is no drug that corrects malnutrition, and never will be.
Agricultural scientists know this. You will have little trouble finding research studies on the role of selenium or vitamin E in preventing muscular dystrophies in chickens, cattle or calves, sheep or lambs. Yet in spite of the long and expensive history of research on muscular dystrophy, only a very small portion has involved vitamins, and it was quite some time ago. In The Vitamins in Medicine, third edition, Bicknell and Prescott provide a thorough review of the literature on pages 612- 619 and 635-641. There is considerable evidence that the disease is an inability of muscle tissue to efficiently utilize vitamin E. I give you the following quote from this medical textbook:
"The peculiar muscular degeneration of muscular dystrophy may be produced in animals is caused and is only caused by lack of vitamin E. Human muscular dystrophy shows identically the same peculiar degeneration. The key to the cure of muscular dystrophy is vitamin E." (See: Rabinovitch R et al (1951) Neuromuscular disorders amenable to wheat germ oil therapy. J. Neurol. Neurosurg. Psychiat. 14:95-100.)
Synthetic vitamin E will not work. On pages 643-644 of The Vitamins in Medicine, DL alpha tocopherol (synthetic "vitamin E") is described as "valueless." It has to be the natural "D-alpha" form, preferably from or with wheat germ, wheat germ oil, and fresh stone ground whole wheat bread (p 645). The vitamin-E-friendly mineral selenium, ideally, is found in these foods (see below).
The most remarkable revelation of all is that muscular dystrophy is described as easier to cure in children, and easier still with added B vitamins and vitamin C (p 644).
SELENIUM The essential trace mineral selenium works closely with vitamin E and helps the body to get more out of less of the vitamin. This important biochemical partnership, or synergy, only works if both nutrients are present. It takes very little selenium, probably about 100 to 300 micrograms (mcg) a day to protect your cells and membranes from harmful oxidation via the protective selenium-containing enzyme, glutathione peroxidase, found in all body cells. By the way, selenium is also found in the protein matrix of the teeth.
Blood levels of selenium are reduced in muscular dystrophy. "Myotonic dystrophy and all its major symptoms (including muscle dystrophy) can be cured or prevented in animals by selenium supplementation." (Werbach M. (1988) Nutritional Influences on Illness, New Canaan, CT: Keats, p 310-311.) An even more recent version is reviewed at http://www.doctoryourself.com/werbach.html .)
Orndahl G et al. (1983) Selenium therapy of myotonic dystrophy. Acta. Med. Scand. 213:237.
Hidiroglou M, Jenkins K, Carson RB, Brossard GA. Selenium and coenzyme Q10 levels in the tissues of dystrophic and healthy calves. Can J Physiol Pharmacol. 1967 May;45(3):568-9.
What works with calves should, in my opinion, be reasonably applied to people.
Foods containing selenium include nutritional (or brewer's) yeast, seafood, legumes, whole grains, animal products and vegetables. However, food is an unreliable source of selenium, as selenium content of soils varies around the nation.
For normally healthy individuals, overdose of selenium is possible with chronic excessive dietary intake. But we need to bear in mind that in the Orndahl study cited above, muscular dystrophy patients showed improvement with a dose of up to 1,400 mcg elemental selenium over period of nearly two years. Toxicity is clearly not a major issue.
Lecithin has been shown to improve therapeutic response when included along with vitamin E supplementation. This is probably due to the fact that lecithin contains a great deal of both inositol and phosphatidvl choline, which appear to reduce creatinuria in those with muscular dystrophy. Daily dosage used is about 20 g, which is about three tablespoons a day.
Jackson MJ, Jones DA, Edwards RH. Vitamin E and muscle diseases. J Inherit Metab Dis. 1985;8 Suppl 1:84-7. (This review explains how vitamin E, and the phospholipids in lecithin, benefit the muscles.)
Milhorat AT and Bartels WE. (1945) The defect in utilization of tocopherol in progressive muscular dystrophy. Science 101:93-4.
Milhorat AT et al. (1945). Effect of wheat germ on creatinuria in dermatomyositis and progressive muscular dystrophy. Proc. Soc. Exp. Biol. Med. 58:40-1.
A Medline search at the National Library of Medicine in Washington, D.C., will yield over 18,300 studies that in some way relate to muscular dystrophy. Yet I have seen no evidence whatsoever that current muscular dystrophy research includes megavitamin and mineral therapy. Every time I see "Jerry's kids" on a poster or on TV, it gets me right here. And every time I'm solicited for a donation to a medical charity, I tell the canvasser that I'll gladly contribute the moment their organization begins to sponsor clinical trials with lecithin, selenium, and vitamin E. It has already been shown that selenium, vitamin E and CoQ10 levels are decreased in people with muscular dystrophy. (Ihara Y, Mori A, Hayabara T, Namba R, Nobukuni K, Sato K, Miyata S, Edamatsu R, Liu J, Kawai M. Free radicals, lipid peroxides and antioxidants in blood of patients with myotonic dystrophy. J Neurol. 1995 Feb;242(3):119-22.) The Vitamins in Medicine was published in 1953. So was Dr. Williams' paper on treating MD with nutrition. What is taking so long to apply that knowledge to those suffering today?
MUSCULAR DYSTROPHY IN A THREE-YEAR-OLD
A Featured Letter from a NEWSLETTER Reader: "In November, 2003, my 3 year old grandson was diagnosed with Muscular Dystrophy. The next day I visited the local health food store with only my 30 year old copy of "Let's get Well" by Adelle Davis (NY: Signet, 1972.) It was there, on pages 235 and 243-245, that I found evidence that vitamins helped. Then, I drove 100 miles to my daughter and her husband's house to deliver a basket filled with bottles of vitamins and other food supplements. My daughter mixes these things together twice a day and, though not quite four years old, the boy takes them with no problem. I recently spoke to my daughter to verify the dosages, which we decided on after consulting the book "Healthy Healing" (11th ed.) by Linda G. Rector-Page (Healthy Healing Publications, 2000. ISBN: 188433489X) and then adjusted for my grandson's size. (His weight is about 38 pounds.)
"He takes: a liquid B-complex supplement, 1/2 tsp 2X (two times) a day Flax Oil, 1/2 tsp 2X a day CoQ10 (30 mg), 1/2 capsule 2X a day Wheat Germ Oil, 1/2 tsp 1X a day Vitamin A (10,000 IU), 1 capsule 1X a day Vitamin E (200 IU), 1 capsule 2X a day 60 mg. selenium, 1X a day. Vitamin C (500 mg), 1/2 tablet crushed 2 X day magnesium maleate, (625 mg.) 1/4 tsp. 1 X day lecithin (600 mg), 1/2 capsule 2 X day evening primrose oil: a few drops a day
"His mother also mixes yeast flakes, lecithin granules, and wheat germ together and tries to add as much as she can to his diet - in cereal, on toast with honey, etc. - and often makes banana muffins with wheat germ.
"Within the first week of supplementation there were dramatic changes. He had been constipated and his stools were black and tar like. That situation soon became normal and now he is completely potty trained. For the first time in his little life, he left his mother's side to run around and play with other children at a school function. Soon afterwards, he began climbing steps without her help and up the ladder to his brother's bunk bed. He runs now and has learned how to jump. On my weekly visits I have witnessed all these changes in his health, strength and personality. On Easter he road his two wheel bicycle with training wheels all the way down the street and last week was beginning to learn how to maneuver his sister's scooter. He is a happier child now and has confidence in himself.
"My daughter received no nutritional guidelines nor any help from her pediatrician, and after waiting two months for an appointment at a university hospital, enduring all their tests, also left there with nothing. When she asked both physicians about nutrition and dietary supplements they told her, 'There are no studies that indicate that diet and nutrition make a difference.'
"What we have right now is a visible increase in the child's energy and strength, which has been noticed by all who know him. We don't know for certain if we are giving him enough of this vitamin or maybe too much of another, but do see constant improvement and are doing the best that we can with what information we've been able to find thus far. I believe there are great opportunities here.
"In the past 6 months there has been a nagging void in my mind: What happened with that promising research information? Isn't there anyone who followed up, who pursued this? I am afraid to imagine numbers of parents who are going through what my daughter did with the doctors last year, only to return home with nothing but the prospect of watching their child deteriorate further. I hope this story may help some of them."
Kathleen M. Hanson firstname.lastname@example.org
Thank you, Kathleen, for sharing your most promising experiences with all of us.
DOCTOR YOURSELF Book and Website News For information about my in-your-face megahealth book, "DOCTOR YOURSELF: Natural Healing that Works" please take a look at http://www.doctoryourself.com/saulbooks.html . When purchased directly from me, I am of course happy to autograph your book for you.
A Doctor Yourself READER REVIEW: "I purchased your book "Doctor Yourself" from Amazon.com and have read it all the way through, twice. It's fun reading, and even the parts that don't apply to me have very useful information."
Thank you. You know, when my book was first published, it was all the way down the sales list at Amazon at about 2,000,000th out of all their products. Really. Now, it is number 89,306. That means, I guess, that I now outsell 1,900,000 other items at Amazon. At this rate, Harry Potter may have some new competition. Additionally, DOCTORYOURSELF.COM has now gone through the 25,000 hits-per- day mark. My heartfelt thank you's to all my readers for your success in making me so popular.
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And here: http://www.doctoryourself.com/cheapheal.html
Here, too: http://www.doctoryourself.com/recipes.html
And, especially, do look at this next one to follow. Here is the chapter that did NOT make it into my Doctor Yourself book. Now you can read it anyway, savor the good judgement of my editor, and appreciate why it was cut: http://www.doctoryourself.com/aphids.html
And speaking of cutting:
LA CORONER'S GIFT SHOP
Yes, it is right "upstairs from the Los Angeles County morgue, and such close proximity to several hundred bodies, even unseen, can be creepy." You used to be able to buy their official red toe tags for $5 each, imprinted with your name, but they may be currently unavailable, or simply "buried" in backorders. Yes, you can get coroner mugs, key rings, bumper stickers, T-shirts, hats, beach towels, boxer shorts, and plastic skulls. Can't get a cheap flight to LA? They are dying for your business, of course, and therefore have an upscale, if tasteless, website at http://www.lacoroner.com
I especially like the "Stay Cool" refrigerator magnet ($2).
(Roderick K. Little shop around the coroner. Smithsonian magazine, December, 2003, p 30-32.)
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