Good Luck, Steve
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
Advice Needed
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Currently he takes co enzyme Q10, Multi Vitamin, Vitamin C and Melatonin. He is 11 years old and has had this condition since birth. As he gets older more symptoms appear and symptom severity has been increasing.
Any thoughts would be Greatly Appreciated
EC: Dear Lizz,
Are the supplements helping at all? We've added a NAY rating because it sounds like they are not from your post.
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
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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
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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.
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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
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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.
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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
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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
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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!
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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
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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!
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