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aussieM

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Reply with quote  #31 
This link isn't working for me

Quote:
Originally Posted by ginny
Click on the link below.  This brings you to the archived Code "V" newsletters on the CVSA web page.  Be sure to talk to the doctor first. 
 
 
http://www.cvsaonline.org/CVSACodeVReprintCoQ10andL-Carnitine.htm
[B][/B]
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ginny

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Reply with quote  #32 

I just looked up the article on the CVSA web site and there is a link to Code V archives but there is a message apologizing for the archives not working.  Ruth at the CVSA office should have a copy of the issue of Code V, looks like it was back in 2005.

 

I hope that helps but there is also more recent information.  If you go to the CVSA web site there is information on mitochondrial disorders, supplements, surveys and some study results.

 

You can also try searching the message board for information that might be more up to date than the 2005 Code V.


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ginny CVSA Moderator
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northcoast_wilson

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Reply with quote  #33 

I'm a 47 year old male .  my history of cvs is long, with years between episodes at times. now days its once a month or so.  my GP finally "let me in" on my condition, after two decades of throwing omeprazol at me.  Am very interested in this COQ10, ill try it for a few months and get back with ya

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northcoast_wilson

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Reply with quote  #34 

 do i need both CoQ10 , and L-carnitine

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esoteric

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Reply with quote  #35 
Bump
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Kim

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the journey is the reward
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cvsdys

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Reply with quote  #36 
"bump"
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cvsdys

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Reply with quote  #37 
"bump"
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wilderness18

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Reply with quote  #38 
I am new to this site.

I am 69 years old and developed CVS with all the exact symptoms three years ago.  My doctor diagnosed it after I consulted her, after about six months of it.

A typical episode would include about five segments of violent convulsive vomiting, spaced about twenty minutes apart.  The last segment would consist of a clear, non-acidic fluid which my doctor said was from the duodenum.  Every episode followed unusual stress, good or bad, or eating an especially large meal.

One year ago I started medicating according to Dr. Boles' regimen:  CoQ10 and L-carnitine, multiplying the dosage for children according to my greater body weight.  This greatly reduced the symptoms, but not entirely, so at that point my doctor prescribed Elavil, according to Dr. Boles' regimen.  Since then, taking both the enzymes and Elavil daily, I have been episode-free for one year.  At the onset of unusual stress, good or bad stress, or warning symptoms, I take additionally a prescribed Xanax. 

Although my symptoms are/were exact for CVS, because of the rarity of late-adult onset, both my doctor and I believe that the condition very likely is due to a side effect of one or more of my prescription medications for hypertension, although it is not listed as a side effect for any of them.  I do know that some other medications can have a side effect that mimics CVS.

I wonder if this might be worth a separate topic on the message board.
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ginny

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Reply with quote  #39 

We do think that adult onset CVS symptoms might be a different condition that pedi onset CVS.  Sometimes when adults are able to obtain an earlier pedi history they will find a history that is indicative of possible CVS as a child and sometimes not.  You respond well to the typical treatment for CVS which is less typical for adults with CVS and this makes me wonder if you would not do well with the supplements in addition to your typical medical regime?


The adults often seem to have a major factor with delayed gastric emptying and this is often compounded by the medications further interfering with gastric motility.  I think the CVS Medical Advisors would find your case to be very typical of pedi onset even though you are very a very atypical age.

Can you recall a past history that might indicate anything from childhood?  history of migraines?  


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ginny CVSA Moderator
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kidsmom

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Reply with quote  #40 
I was looking at teh epic 4 health website. Can someone tell me which one they buy? Is this good?

Carni Q-Gel (L-Carnitine and Q-Gel 60 Softgels)

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ginny

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Reply with quote  #41 

The dosage is often adjusted and body weight, stress levels, weather and other factors can be a reason for an adjustment.

The suggested dosages are in the study on the CVSA Web Page under the research tab.  You can also search the supplements in the search box.

We cannot post dosages on the message board.  

One thing to consider is after the CoQ10 is established, it seems that adding in Vitamin B or at least riboflavin, can help quite a bit but not until CoQ10 has been used for a while.

You can get a prescription for LCarnitine (Carnivore).  This can help with expenses if your insurance has a medication plan.

If you get in touch with Epic4Health or Healthy Origins you can arrange for a CVS discount.  This helps with the costs and also you will know that your supplements are pharmaceutical grade.  Dr Boles feels the Trader Joes brand is okay.

There is a lot of information on the web pages of both companies.  If you suspect a soy problem, common with CVS, be sure to order a soy free supplement.  Added Vitamins will not allow you to adjust the dosage due to worries overload of vitamins.  Added Vitamin E will often indicate some soy as American E tends to be soy derived.


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ginny CVSA Moderator
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HeCallsMeBama

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Reply with quote  #42 
1. Of these two brands (Epic4Health and Healthy Origins), does anyone know which is the smaller pill? I want to order it for my daughters and they can each swallow a normal sized capsule, but I don't know that they could anything huge.

2. Also, I've given them the ubiquinol form in the past. Do we know Dr. Boles' thoughts on CoQ10 versus the Ubiquinol form? What do folks on here generally use? Thanks!
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