17 year old with duchennes muscular dystrophy

Posted By Hannalee (Central Ca, Usa) on 01/10/2011

My friend's 17 year old son has this condition. I was wondering if anyone has any recommendations for strengthening his muscles. He has been ill lately and has been left rather weak. He is having trouble eating without choking and is losing weight. I gave her some kombucha, mineral-rich bone broth and fresh eggs. Any other ideas?
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Replied by Mmsg (Somewhere, Europe) on 01/11/2011

Hannalee, spirulina is supposedly given for malnutrition woes.
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Replied by Tom (Regina, Sk) on 01/14/2011

Hannalee:

I note you mention both a him and a her in your post?

Your mineral-rich bone broth is on the right track, but the only minerals you will get out of that will be the ones in there to begin with, which means if it was a bone from the typical feedlot finished animal, and/or fed industrial feed when raised, then you won't know if you're getting anywhere near the 70 or 90 essential minerals and complexes documented as necessary to be present for good health.

So, you can either go the organic meat/bone route for soup stock to try this suggestion, whether that be beef or chicken or whatever, or possibly try a very high quality mineral supplement. That unfortunately does not mean those one a day multimineral pills that cost about a dime each and are worth about that.

Here is just one link of many about the discoveries of 50 to 100 years ago that the diet of meat animals, if deficient in many trace minerals, leads to serious diseases and even death.

therx4health.com/exercise_without_supplementation_is_suicide.htm

Thirty-seven years ago, in 1957, it was proven in animal studies that the trace mineral selenium was essential to life and that a deficiency of selenium produces a variety of diseases ranging from cardiomyopathy (known in animals as "Mulberry heart disease" or white muscle disease) to muscular dystrophy. Additional research proved with 100 percent certainty that cardiomyopathy was preventable and, in the early stages of diagnoses, curable with supplementation of selenium.

It's doubtful that just one any or specific mineral can reverse anything serious without all the other supporting cast, but If looking for just selenium to try for now, you want something bioavailable, not just inorganic metal, so selenomethionine is widely available for this supplementation:

www.bing.com/images/search?q=selenomethionine &go=&form=QBLH&scope=images&filt=all

Just do a Google or Scroogle Search for any string like "muscular dystrophy selenium deficiency".

You'll be amazed what shows up in the results!

A very well known expert to research is Dr. Joel Wallach, DVM ND who is in his 70's now and has been researching all this since the 1960's!

If going to a true multimineral supplement, one with as close to the 70-90 minerals present and bioavailable as exists, then find some good brand of plant-derived humic/fulvic mineral complex. That is key!

What is a "humic fulvic acid? Here's a very short snip:

Humic fulvic acid is the smallest, most complex, most highly-refined, naturally-occurring, water-soluble substance on earth. It is an all natural substance that has been extracted from ancient deposits of organic matter. It can be refined for human use as a dietary supplement.

Humic fulvic acid is created by microbial activity at the roots of plants. Its function is to dissolve and convert the metallic and clay-based mineral molecules that are in soils into a form that is usable by plants, animals and people. Once the minerals are dissolved plants uptake, through their root system, the powerful humic fulvic substance that is loaded with dissolved minerals and trace elements. Supplements high in humic fulvic acid come from ancient deposits of lush plant matter that were buried millions of years ago before chemicals, pesticides, and other harmful substances ever existed. The H.F.A. Strength of today's plant-derived mineral products depends on the fulvic humic concentration of its source.

BTW, a not well known search feature of any search engine is that if one enters as a search query into the box any exact phrase, sentence, paragraph, etc. but enclose it all inside DOUBLE quotation marks, then the exact URL webpage will be retrieved where that phrase is present!

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Replied by Art (Tustin, California Usa) on 08/13/2011

Many studies have indicated that MDX's have excess inflammation and oxidation as major components that appear before the actual damage is done to the tissues. There are some people who feel that if you can control or signifciantly reduce these two mechanisms, you can halt or slow the disease progression. Surprisingly, there are not many studies that have explored this area of research though.

The following study from Spain took this theory a step further by giving a small group of Duchenne muscular dystrophy patients a pharmacological dose of melatonin on a daily basis for months to see what effect it would have on them.

Melatonin is a proven and potent antioxidant that is capable of doing what many other antioxidants can not. It is also a proven inhibitor of inflammation. http://www.molmed.org/pdfstore/043_50.Korkmaz.00117.PDF

Melatonin is a naturally occuring substance in the human body whose production decreases as we age.

Melatonin is generally regarded as safe (Gras) and even very high doses have been well tolerated. Melatonin is mainly thought of as a sleep aid at doses around 3 mg per day at or just before bedtime, however multiple studies are showing many potential benefits at pharmacological dose levels. The following study on DMD patients is one such study. http://www.ncbi.nlm.nih.gov/pubmed/20210854

Here is a followup on that initial 2010 study: http://www.ncbi.nlm.nih.gov/pubmed/21515247

The improvement numbers recorded in this study are very impressive and tend to add confirmation to the idea that controlling excess inflammation and oxidation may be a viable treatment option in MDX. Given the mortality sequence of DMD patients this study suggests that melatonin may be a worthwhile consideration.

If you continue along the line of thinking that supplements that are relatively safe, while being able to fight excess oxidation and inflammation, may be helpful for MDX patients, then it would make sense to look at other supplements with these qualities. A few that come to mind are curcumin at lower and medium dosing , vitamin d at higher dosing and alpha lipoic acid at medium dosing. The combination of these four supplements may go a long way toward reducing excess inflammation and oxidation which suggests the potential to slow muscle degeneration significantly. There are quite a few other natural substances that have potential to reduce inflammation and oxidation but the above have quite a few studies behind them to confirm their potential. The combination of vitamin c, vitamin e and omega 3 fish oil is also a proven and potent anti-inflammatory and antioxidant trio in the human body. http://www.ncbi.nlm.nih.gov/pubmed/21138533

From a different approach, creatine has shown that it has the ability to increase lean muscle mass and strength, even in MDX patients: http://www.ncbi.nlm.nih.gov/pubmed/21399918

http://www.ncbi.nlm.nih.gov/pubmed/21328269

http://www.ncbi.nlm.nih.gov/pubmed/20395096

http://www.ncbi.nlm.nih.gov/pubmed/19751179

A two pronged approach of attempting to slow muscle damage while also attempting to add lean muscle mass back seems like a possibility given the lack of other viable treatments that are currently available for MDX patients.

Art

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Replied by Lawdawg (Kyle, Texas) on 04/22/2012

I have FSH Muscular Dystrophy. You have to try ionic trace minerals. There are four MAIN elements the body needs to keep itself regulated and they are: Calcium-1, 200mg a day, MAGNESIUM (magnesium chloride-ask your pharmacist)-200mg a day, ZINC-15mg a day, and IRON-100mg a day. Use the trace minerals because the human body needs about 50 to 70 minerals and elements to work correctly. We are getting screwed over by the food we eat. It is extremely inadequate as far as nutrition for our body to maintain itself, grow, and even repair itself. Good luck guys!!!
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