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Ddirose

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Reply with quote  #1 
Hi there,
Just received my daughters tests back for her mitochondria as well as other labs. Due to her mitochondria numbers, the doctor wanted her on COQ10 and B vitamins, but he did NOT want her on the carnatine. He said her carnatine numbers were high to begin with before she even started on the supplements. It makes me a little nervous because of L-Carnatine being in the daily treatment protocol. She’s been feeling really well since she has been on all three of them. I guess I am just nervous and am asking if you have heard of anyone who just took the COQ10 and B vitamins and not the carnatine? I’m worried if I keep on it, it will keep her other numbers out of balance with her mitochondria. Right now her body is at 202% for mitochondria, it is trying to overcompensate for not working well. Any suggestions?
Thank you so much.
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ginny

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Reply with quote  #2 

I am thrilled your daughter is doing well!  Unless there is a reason to remove the LCarnitine maybe the doctor will allow you to continue. Your doctor might try a telephone consult with Dr. Richard Boles, his information is on the CVSA web page.

Not everyone takes all the supplements.  Dr. Boles had suggested CoQ10 be established before the B vitamins but this is due to some getting a stomach upset from "B".  Not everyone will get an upset stomach.  Some do add in Magnesium, either chelated for better absorption or other forms, depending on doctor preference and suggestion.

Let us know how you do and what the doctor says.

Again, very happy news that things are going well.


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Ddirose

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Reply with quote  #3 
It’s amazing Ginny, she’s like a different kid since she started the supplements!!! Her energy level is 100 percent different. She is a calendar kid, so we are just tooling along and seeing where this new found difference in her takes us. The doctor she is seeing is a MD and a Homeopathic doctor. We are fortunate to live in an area with an open minded doctor. I see in her numbers why he is saying no L-carnitine, it just makes me nervous since it a recommended supplement.

I really appreciate you Ginny and Blynda!

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wynnak

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Reply with quote  #4 
It can be helpful. But if it affects other functions then or he”levels” are fine.. then maybe have her tested in episode to she if that changes. My son’s CoQ10 levels are fine Until he’s episodic. We keep him on a lower dose just to help him level. Which seems fine and what probably helped him meet the level in the first place.
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ginny

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Reply with quote  #5 
Another thought is if the extra Carnitine is flushed out of the body if it is not needed?  If so, then it might not cause your daughter any harm to stay on the Carnitine.  If you do stop,as Blynda suggests then maybe her levels will be off?  I know you would not want to slide backward and chance Carinitine not having a good effect upon a restart.

Calendar kids can be really tough to help so I think it is really spectacular that your daughter is responding to the supplements.

I know of others who were doing well and stopped medication then when the cycles started up again the meds were no longer helpful.  This is not the supplements so I don't know about stopping one supplement and trying to get back to a level where the child is now doing well.

When we first started to look at the supplements, Dr. Boles had another CVSA member and me run an anecdotal study.  Every person in the study (a small sampling, maybe 75 people) had a positive response to the supplements.  No one had a negative response.  Not every person was cycle free but they did appreciate the improvements.  I think this study is mentioned in the official CVSA study on the Supplements and Amitriptyline that is posted under the Research Tab on the CVSA web page.

No one was tested for their levels before or after we ran the anecdotal study.  We knew nothing about CVS and mito issues back then.

You might locate additional information on http://www.MitoAction.org   There are lots of doctor interviews, studies, suggestions and more.

In recent years there has been almost no communication on the MB about the supplements.  I hope your posting encourages others to try them.



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ginny CVSA Moderator
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Ddirose

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Reply with quote  #6 
Well, after much reading and going over her labs, and honestly, trusting my mothers gut - I have kept her on the L-carnitine. Why I very much believe in her doctor, he is also not a specialist in CVS. This is the first time ever in our CVS journey that she has felt this good, and we have had this kind of hope. I am not willing to rock that boat. When I get time I am going to post another thread with suppliments as the topic, in hopes it can get some more attention on the boards and maybe help someone else. I feel it is so important to post the positive here as well as the bad, it’s the only thing to keep us all going.
Thank you ladies!!!
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abigaillinda

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Reply with quote  #7 
Dr. Boles's protocol looks at the free L-Carnitine number which he recommends be greater than 40.  That's what my daughter uses to decide how much (or little) L-Carnitine supplement to tweak.  

So thankful to hear that your daughter is doing well.  
Linda
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