Mitochondrial Myopathy Remedies

To:Steve G. (Shanghai, China) on 02/04/2016

Hi Steve, can you update us on the B3 vitamin if you ever took it for mito myopathy?

we have a family member who is 35yrs old and his health is deteriorating fast, he just started on the BASIS Metabolic Repaiir & Obtimization pill (not sure if you aware of this pill) (https://www.elysiumhealth.com/basis). this is from a research center in Switzerland but the vit sold from USA

Thank you

Thank you for the quick responses regarding my son's Mitochondrial Myopathy.

To: EC yes the supplements he is currently on DO HELP! The co-enzyme Q10 helps his energy levels.The vitamin C and multi vitamin helpful in general boosting of his immune system and the Melatonin does help with his periodic insomnia. I am continually looking for other possible therapies that may help with his symptoms.

to: the_phoenix The Mag oil is a new one to me, we will definately give it a try it certainly can't hurt. As for his diet and excersize. We do avoid as much processed foods as possible, lucky for us he loves fruit and veggies. We also avoid anything with dyes, MSG and Artificial Sweeteners. Excersize is difficult for him but he does participate in physical activities.He is gradually learning how far he can push without exhausting himself to the point of going into what we refer to as a Down Time. A down time consists of breathing issues inability to get up from laying or sitting position, inability to walk properly (looks like a drunken sailor) extreme fatigue and very irritable. A Down Time can be caused by him over doing excersize, any kind of illness (cold or flu) and sometimes just out of the blue with no known trigger.

If anyone has any other suggestions I would love to hear them.

To: Phoenix

Thank you for your further thoughts, I appreciate it alot.

As for my sons diagnosis, his diagnosis is Myopathy ( probably Mitochondrial) We are still waiting on results from his Muscle Biopsy. Unfortunately diagnosing a case like my sons (because he is considered mild in symptoms) is extremely difficult. When someone is mild in symptoms it doesn't always show up on the testing available and the doctor bases the diagnosis on clinical evidence. Which is the position were in right now. Unless the biopsy shows something definitive. We have been waiting for results for 4 years now!!! The biopsy was sent to one lab in Vancouver for testing hoping it would show something during the basic testing they can do. The only thing it showed was a higher predominance of one muscle fiber type over the other.Then the biopsy was sent to Toronto where they can run more highly specialized testing. Unfortunately there is only one person who is qualified to run this kind of testing. She has been on maternity leave twice in this time and needless to say the backlog of work for her to do is huge. So we continue to wait. So based on Blood and Urine tests, MRI on lower spine and Brain, Heart testing, Lung testing, Nerve condution,EMG and his clinical representation we have Probable Mitochondrial Myopathy.
There is no history of this type of disorder in our family it is considered a spontaneous mutation.

As for the other things suggested

He does get massage therapy along with his chiropractic.

Excersize - he does have certain things he enjoys and he does last longer in doing them than ones he doesn't. So I agree where there's a will there's a way.

Salt water - when he is sore and in pain I give him baths in really warm water with Dead Sea Salts added it makes a huge difference for him.

ACV - With everything I have now read on here about ACV I am going to be adding that to everyone in my households regime. It has so many excellent reviews for so many issues I think everyone could benefit from it's use.

Again Thank You for all of Your suggestions

Lizz

To: The_Phoenix

I have done alot of research into my son's condition and the possibilities of what could cause it. As for his symptoms matching MM, for starters there are many types of Mitochondrial disorders and the symptoms are quite varied and yet overlapping. Even two people in the same family with the same form of MM may have completely different symptoms. Sleep issues though are quite common in children with MM.
I have had my son in to see many doctors. He has been to a pediatrician, neurologoist, physiatrist(specializes in movement disorders) pulmonologist, cardiologist, internest, psychologist, psychaitrist, chiropractor, massage therapist, occupational therapist, physical therapist, accupuncturist and iridologist. And with each of these Doctors I do the research into how it may help in diagnosis and treatment for my son.

The answer keeps coming back as Myopathy (Probably Mitochondrial).

His vitamin, mineral and hormonal levels are tested on a regular basis and show at normal levels.

As for diseases of the nerve synapses, cholestoral and dopamine etc. All of these things have been tested for and ruled out,

I Really appreciate all the thoughts on possibilities unfortunately after 6 years of testing there really isn't much that has been missed, His primary Doctors (pediatrician who specializes in children with hard to diagnose disorders and neurologist who specializes in muscle disorders) are very thorough.

If I tried to list everything that has been ruled out it would take a very long time!

Again I really appreciate Your Time and Effort in your responses. And look forward to any other thoughts on possible treatments.

Thank You
Lizz

Hi Lizz...The first thing which might be useful is for you to get a simple hair mineral analysis done on your son's hair. This will reveal any deficient or dangerous chemicals and minerals in you son's body and won't cost much.

Second, since your son's condition is a mitochondrial condition -- his energy, moods and sleep must be greatly affected. One supplement which would certainly help is Methylene Blue. Ted uses this chemical as an anti-fungal and ant-cancer remedy. He also describes the effects of Methylene Blue as "a super-antioxidant for the mitochondria" and wonderful for energising your body as well as for removing fungus etc. from the body. You can read about it here:

https://www.earthclinic.com/remedies/methylene-blue.html

MB has been used for some time as a cure for Malaria, and was used for this purpose by the US during the Vietnam War(in much larger amounts than advised here). Only trouble is that it turned the whites of your eyes blue and turned urine green !! But if you take vitamin c with MB, then this does not occur and there are no other side effects.

I've been using methylene blue for some time now. I crush and dissolve 2 grms of ascorbic acid, add it to a glass of water, add 1/4 teaspoon of Baking Soda(Arm and Hammer brand) in order to create sodium ascorbate -- the friendlier alkaline form of Vitamin C. Then I just add one drop od 0.1% Methylene Blue to the mixture and drink it. There are no side-effects if you use methylene blue with Vit c.

But be warned -- never take this mixture in the evening -- otherwise you will have too much energy and won't be able to sleep !!

Hi again Lizz...I also agree with everything that's been said about Magnesium. Though my preference is to absorb the magnesium from either soaks or spraying.

Here is something I wrote elsewhere on Earth Clinic:

"By far the best way to take and absorb Magnesium into your body is either by soaking yourself in the bath for at least 20 mins (adding 3 cups of Epsom salts to the bath water) or to use a little warm water (enough just to submerge the soles of your feet and toes in a small bow), add and dissolve 3 tblsps of Epsom Salts, and soak your feet for half an hour (less wasteful than a bath, but just as good). The reason that this is the best way to absorb magnesium is that its absorbtion does not require the digestive system, so there is no chance of problems like diarrhea. Also, by soaking, the body will only absorb the amount of magnesium that it needs, so this method works well with your body's magnesium regulation.

The first time that I did this foot soak with Epsom Salts was at 9:00 pm at night. By 10 pm, I was so relaxed and tired that I just went to bed (I usually never go to bed before 12 at night) and I woke up the next morning wide awake and fresh for the day. No brain fog or grogginess.

I'm 60 y o and I do this Epsom Salt foot soak once a week now, or whenever I have aches and pains(which rarely happens now).

I also use an 8 oz garden spray -- which contains water 3 teaspoons Epsom Salts 1 teaspoon of Borax(20 Mule Team brand) as antifungal to spray onto the outside of my body after showering and drying. I rub it in and leave this to dry naturally on my body.

These soaking and spraying methods are far more efficient and safe than supplementing with magnesium pills. They also safely deliver far larger amounts of magnesium into the body than oral supplements, and it is completely safe with no side-effects.

To: Bill from San Fernando

Thank you so much for the information on Methylene blue! I read the info on the link you provided and can't wait to try it on my son. I would love to see him having more energy.

As for the information on magnesium I have tried soaking my son in epsom salts baths and I have now tried the suggested Mag Oil in a spray bottle.

But I find the most helpful one for my son so far is soaking in baths with Dead Sea Salts. I do not know what the concentration of magnesium is or what else it has that the others don't all I know is it helps more. I originally decided to try them because when I went to Israel it was pointed out when we went to the dead sea that many people (especially the ederly) come there to ease aches and pains.

Again Thank You
Lizz

Hi Lizz...Just had another thought which might help.

Your son's condition might have arisen because of all the chemical pollution in the food and water supply, by way of halides like chlorine, bromine, flourine and heavy metals like mercury and lead.

Ted is fairly convinced that many ailments are caused and aggravated by the pollution of our water and food supplies. This may well be the case since your doctors are having such a difficult time pinpointing your sons exact condition.

Ted has talked about Sodium Thiosulphate being used here to leech out and rid the body of these dangerous pollutants safely. Here is the link to Sodium Thiosulphate usage:

https://www.earthclinic.com/remedies/sodium_thiosulfate.html

Sodium thiosulphate is fairly safe for the body -- it is even widely used as an antedote for cyanide and arsenic poisoning by the medical profession and has been used as a blood buffer or flush(together with Sodium Bicarbonate) against the affects of cancer chemo for years.

The usual dose of Sodium Thiosulphate for an adult is just one or two drops in a glass of water. And usually, the first time it is taken, this causes diarrhea but not with subsequent doses.

You can buy Sodium Thiosulfate from pet and aquatic stores. Used to remove chlorine, bromine etc from fish tanks.

Another beneficial side-effect from taking sodium thiosulfate is that it makes you sleep like a baby, which might also benefit your son.

To: Bill

Thanks for your further thoughts on my son's condition and supplements that may help him. I am going to start the methylene blue soon and will wait to see what that does before starting anything else. But will definately keep this in mind for the next new thing to try.

Thanks Yet Again

Lizz

To: Phoenix

I know the complexity of the case is daunting, My son's neurologist refer to him as her little puzzle. And as you said there are so many details that are tucked away here and most people posting on here are very far away from us. As to the point where he hits his teens I have actually been looking forward to and at the same time dreading that time. Alot of kids with myopathies do get better as they head into thier teens and alot get much worse. So as this time quikly aproaches I sit and watch hoping and praying for improvement and preparing for the possibility of worse. My only consolation being that if it is worse at least it may give us the answer as to what is actually wrong. But I continue to look at all things posted and reread all the posts to date for further info that may help. I Thank You again for all your thoughts and help.

Lizz

LIZZ.... Not sure if you have consulted a metobolic clinic or specialist in your area.... But, muscle myopathies seem to react well with these supplements.... Levo-Carnitine(here in BC you need a dr's rx for it) , B1 and B2(50mg of each a day), COQ10 (300mg or more daily) I have read journals where people take 1200 mg with no side affects and have major differences in energy), Lipoic Acid (50mg/day), creatine (any health store or body building store will have it in powder form)... These are the cocktails we give here for people with mito-myopathies. Your child is still young, and I don't know if his condition is extremely or gently progressive....... But those supplements above should help.... The levo-carnatine will basically help the food he eats to metabolize into the fuel cells more effectively.. In laymans terms. Don't want to get too technical on you... And yes, I am a real doctor. (Pediatrician)

Take care.. If you need any more help just post again. Your post caught my eye and thought I would try to help.

I have endured the effects of mitochondrial myopathy for the last 10 years and as I hit my 40's, the effects have intensified. I'm fortunate to have an incredible research doctor at the University of Michigan and to have undergone every test possible concluding with a muscle biopsy. In brief, working from memory from my conversation with my doctor, they have found seven different things that can go wrong with the mitochondria. Of these seven, only 2 or 3 respond to vitamin therapy. I've been fortunate, very high doses of CoQ10, B1, B2, and Folic Acid were prescribed and have made a significant difference for me. I've been very scientific and have tried other supplements listed by others in this blog and I have not benefited. What I have found is that I need particularly high doses of these 4 vitamins if I am sick or if I have a digestive issue inhibiting uptake. I've also found that the vitamins benefit me most if I make sure to take a dose prior to sleeping (so they are not expelled through urination for several hours) and after I do any sort of workout (even walking 2 miles will result in cramping for me).

Bottom line... There are different versions of issues with mitochondrial myopathies. I can thank Lipitor which triggers mitochondrial myopathies in a small percent of the population. What works in one version, may have a minimal or no effect in another version. U-M is working on these myopathies and there are regular conferences held... Lets cross our fingers that they find a cure. I'm confident... My doctor is exceptional and specializes in these myopathies and I have all the confidence in the world he's going to make a difference. Best wishes for your son!

To Dr. House Thank You for your thoughts on my Son's condition. I am already aware of the supplements you have suggested and my son has been on all of them in combination and some individually. The only thing we have found to be helpful is the Co-Enzyme Q10 taking 600mg per day he also takes a multi vitamin a brewers/ Kiefir yest breakfast drink with Juice fruit and yogurt and vitamin C. He also takes 9 mg of melatonin to help with sleep issues.

Yes a Sleep Study has been done. The only thing noted was elevated leg movements. His Doctors refer to him as being non progressive and mild. While this is good it tends to make diagnosis more difficult. At his last appt. with his doctors they actually said his actual muscle strength is improving so that is also a Big Plus. His doctors have been discussing the possibility of sending him to a team of doctors that specialize in these types of disorders in either Calgary or Toronto but have held off as he has been showing improvement.

So I just keep an open mind and keep trying things. We keep what works and so far all of those have been things suggested by his doctors and by my Grandmother who has extensive knowledge about natural remedies. Also you can get as technical as you want, when my son gets any results from testing his doctors hand them to me so I can read them knowing I will understand them. Due to the extensive amount of research I do I have learned a whole lot. Lizz

To Richard Thank You for your note I appreciate you sharing your success with certain supplements. As you will see stated above my son too has found some success with Co-Enzyme Q10 and the others I listed. So far this combination works best for him. For my son when exercising it isn't so much cramping as it is total exhaustion, and he would be incapable of walking 2 miles. So we do short walks with our dogs and he plays with friends. Some days he uses a walker some he doesn't. We just take it day by day and hope for the researchers to come up with something new. Again thank you for your thoughtful Note Lizz

Lizz, Your posts read like our current life's story. Our 2yr old is currently in the process confirming Mito Myopathy. Mildly expressed symptoms as you mentioned have been both a blessing and a curse for us. So many different doctors and therapists. We just started CO Q10, B Vit and Carnitine a couple of months of ago and with marked improvement.

I was just wondering if you had any additional reccomendations. Food intolerance/GI issues and sleep are big issues for my daughter right now. Thanks!

Try a liposomal Glutathione - master antioxidant, PQQ, coQ10 to rebuild and protect the mitochondria, and shilajit to enhance the performance of the coQ10. I have recently had Chinese Dr tell me he suspects I have a drug induced mitochondrial disease.

My daughter was also diagnosed with this and she was prescribed hydroxizine to help her maintain her sleep, and it definitely helps! L Carnitine is also a good energy booster.

here is a list of supplements recommended by a doctor for improving mitochondrial health:

• acetyl-l-carnitine 800mg twice daily
• n-acetyl cysteine 600mg twice daily
• alpha lipoic acid 200mg twice daily
• coq10 100mg twice daily

I would also add MCT oil to see if it helps.