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MomofCV

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Reply with quote  #1 
My sons genetic testing was normal and showed no mitochondrial dysfunction. Therefore, the doctors stopped all the supplements a few years ago. He was only on the supplements CoQ10 and L-carnitine for a little over a month. Has anyone had negative genetic testing, but found the supplements to be helpful?
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Krystal Hough
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ginny

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Reply with quote  #2 

My understanding is the not all mito conditions are diagnosable.  We are in the early years of mito disease acknowledgement and the thought is the CVS is or might be a mito disorder, not a disease.

It seems consistent that CVS is thought to be a Functional condition-- there are real symptoms but nothing is "really"wrong (much like IBS).

Dr. Boles has stated that if the child has three or more health problems then that child is probably a mito child.  I think this could be symptoms of CVS, autism, asthma.  Or any kind of mix.

My best recollection is that there is rarely a deficientcy when testing for CoQ10 or Carnitine or B levels.  It is thought that Magnesium can be helpful for migraine headache patients but I dont think these patients are tested for or suspected to be deficient in magnesium.


You do want the doctor to know when you are adding in supplements or even vitamins. Most doctors will say something like 'it is not likely to help but probably not going to hurt".

If you think your son did better on the supplements, maybe ask his doctor if it ok to try again.


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MomofCV

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Reply with quote  #3 
Thanks for the info, Ginny!

He is most definitely a migraine headache patient. I believe the migraine headaches are what trigger the CVS. I think we'll try to add the magnesium back into his daily routine (with neuro ok, of course). 



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Krystal Hough
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wynnak

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Reply with quote  #4 
Unless Dr. Boles was the one reviewing his results, I wouldn't rule anything out. If you live in certain states, you can have him review your results via telemedicine. I would look at that. The DNA sequencing is massive.. and dr boles looks at a very small section. Were you seeing a mitochondrial specialist? Or a regular geneticist? It also matters what type of sequencing he had done. 

CoQ10 levels can be checked via a blood test. So you may still have that done. My son brushes the line of Normal.. so he takes a vitamin that includes CoQ10, or Dr. Boles Spectrum needs for what my son calls his "booster". He feels better taking it. So he will take it on days he feels he needs the "booster".



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