Cyclic Vomiting Syndrome Message Board
Register Calendar Latest Topics
 
 
 


Reply
  Author   Comment  
gcwhit

Registered:
Posts: 14
Reply with quote  #1 

My daughter's CVS doctor has prescribed CoQ10 supplements and recommended Q-Gel Brand from a company called Epic. However, I found these supplements contain very high amounts of Vitamin E, which concerns me since she would be taking several of these every day. Can anyone recommend another high quality CoQ10 supplement? I would also love to know what products Dr. Boles recommends since he has done quite a bit a research on the use of CoQ10. Thank you.

0
ginny

Moderator
Registered:
Posts: 4,378
Reply with quote  #2 

I am not sure what brand if any Dr. Boles suggests.  Healthy Origins had or hopefully has Coq10 without Vitamin E.  I thought that Epic4health also carried a product without vitamin E.  Both companies will have a knowledgeable person talk to you if you call the 800 number. 

Both companies were also reducing the costs for those taking the supplement for CVS.

 

Good luck, I would love to hear what brand you decide upon.


__________________
ginny CVSA Moderator
0
smileyface

Registered:
Posts: 161
Reply with quote  #3 
The coq10 qgels by Tischon (and sold on epic4health) do have vitamin E in them; however, depending on the amount taken, this may or may not exceed acceptable levels.  Usually, if you get the pills with the largest amount per pill then you can minimize the amount of vitamin E as much as possible, which is important since vitamin E is a fat soluble vitamin that you can overdose on.  The Qgels are a form that have been studied in the clinical trials for mitochondrial disease. 

There is also a form of coq10 that is active and water soluble called ubiquinol.  Some of the mito doctors are now recommending this. I'm not sure what Dr Boles is recommending at this time. It allows for higher dosages to be taken since it does not include vitamin E. Kaneka brand on epic4health is the one most often studied in current clinical trials.  Ubiquinol is supposed to be easier to absorb. 

I would talk to her doctor again and clarify which may be the best option for her.  As a side note, Tischon and Kaneka brand coq10 are not sold exclusively through epic4health, and can be found cheaper elsewhere.  However, most doctors will suggest epic4health since initially they were the only company that carried these products. (Tischon and Kaneka are manufacturers, not suppliers, so they sell to other companies who then package the product and stick their own label on it).
0
gcwhit

Registered:
Posts: 14
Reply with quote  #4 

Thank you for the responses. What a great resource this message board is! I've looked into all of the suggestions posted here and decided to go with the Quinogel (ubiquinol) product by Tischon. It is water-soluble, so no Vitamin E. And still promoted as being highly absorbable, like the Q-Gel products.  I price-checked the product at a few different places online, and EPIC4Health was actually very competitive. I think I will still go with them, since they seem to have excellent customer service. To me, that is worth paying a little more!

 

Thanks again for the help on this issue!

0
fionasmom

Registered:
Posts: 17
Reply with quote  #5 
I know that this is a very old post, but I thought that it might be helpful to somebody who is new to the forums.  At the CVSA conference last weekend Dr. Boles told us that the Trader Joes brand CoQ10 was very effective.  He does blood tests to determine the level in the body and has found great results with the Trader Joes brand.  He also said that the ubiquinone works well and you do not have to buy the more expensive ubiquinol.
0
gcwhit

Registered:
Posts: 14
Reply with quote  #6 
Thank you. I will buy the Trader Joe's brand after we exhaust our current supply, which is very expensive. Dr. Li checks blood levels as well, so I will request another blood test after the switch to make sure her levels are staying in the target range. Thanks again the post!
0
carriekiss

Registered:
Posts: 21
Reply with quote  #7 
Andrew Lessman has the purest form of Co-Q10. All of his suppliments are natural and do not have all the fillers in them! The cheapest time to get them is when he is on HSN!!
__________________
Carrie Kissinger
0
esoteric

Registered:
Posts: 299
Reply with quote  #8 
bump, more info bath boy!
__________________
Kim

CVSA Volunteer

the journey is the reward
0
ginny

Moderator
Registered:
Posts: 4,378
Reply with quote  #9 

To get back to this and if I remember correctly, Kaneka is the natural and "pure" form of CoQ10, from Japan.  It is used in the product packaged by Tischon which is the product most often used in clinical trials.  Tischon is a pharmaceutical grade CoQ10   Healthy Origins also sells Kaneka based CoQ10 but their product is suspended in Olive Oll and not Vitamin E.

There is CoQ10 on the shelves at stores at various pricing.  Some of it is synthetic and derived from tobacco--more of this information is on the CVSA web page and also on the Message Board.  There is also natural CoQ10 sold at different prices but unless you are buying pharmaceutical grade, I don't think there are the same controls over the CoQ10 so you are not going to have as much awareness of the dosing.

Maybe Dr. Boles has knowledge of Trader Joes production of CoQ10.  And if pricing is a concern, some is better than none.  Some people can tell by how they feel if the dosing is right but as smiley face pointed out, if there is vitamin E, if you feel that your CoQ10 dose is low and you have reached your maximum Vitamin E dose, you cannot pop another CoQ10.

If you are sensitive to Soy, much of the E in the US is said to be derived from soy.  Be cautious, call the 800 on the label.  Also, calling the 800 number should give you information on if your CoQ10 is Kaneka based CoQ10 or not.


__________________
ginny CVSA Moderator
0
Lioralourie

Registered:
Posts: 11
Reply with quote  #10 
You have to be a little bit careful, there are "Kaneka Q-10" and similar Kaneka words on products that are NOT ubiquinol but ubiquinone.  

From what I understand UbiquinOL (not ubiquinone) is what you want.  the -OL is the more biologically available version.  The amounts used in studies and on my DS forum lists generally recommend are around *mg/kg dosage, though I just found this study that  no observed adverse effect level (NOAEL) , at least for dogs used in this study, was deemed greater than *** mg/kg body weight dosage.  http://www.ncbi.nlm.nih.gov/pubmed/18404543

__________________
Adult Onset, new diagnosis.  Mom of 3:  kid #1, age 10, formerly with PDD-NOS on the autism spectrum (RECOVERED 5 years ago), a Neurotypical boy age 8 and a lovely 5yo girl with Down syndrome (who we are treating with vitamins and supplements). 
0
ginny

Moderator
Registered:
Posts: 4,378
Reply with quote  #11 
Epic4health sells the form of CoQ10 used in studies.  They and Healthy Origins are our best suggestions for your Pharmaceutical quality CoQ10 quality product, controlled amounts in each dosage.  CVS patients and Mito as well as other conditions receive a discount making the products more affordable.  Epic also has LCarnitine. 

Good luck, read up on the supplements on the Web Page and also on the message board.  Another member and I ran a study around 12 years ago and almost everyone responded well to the supplements.  Some on just supplements and some on both medication and supplements.  A few people were found to have other medical conditions so continued testing is very important.


__________________
ginny CVSA Moderator
0
Mmwinget

Registered:
Posts: 28
Reply with quote  #12 
Hi all! All of this supplement info is a bit overwhelming to me. My daughter is 5. We take co enzyme Q10 & Lcarnetine daily. She has to have a liquid version. I want the best, most natural product. (No fillers etc) if possible. Any suggestions? Thanks a bunch
0
ginny

Moderator
Registered:
Posts: 4,378
Reply with quote  #13 
Probably the most reliable Carnitine is the prescription Carnitore. The best source of information and pure product is pharmaceutical grade Co10 which Epic4Health and Healthy Origins carry.  Please review the information available, and you can link into studies on CoQ10 on the Epic4Healths web site.  Dr. Boles suggests Trader Joes bran of CoQ10 but I don't know anything more than that.  Both Epic and HO should offer discounts if you call and let them know your child has CVS.  There is additional information on the supplements on the CVSA web pages, on Dr. Boles web site, on MitoAction.org
There is natural and synthetic CoQ10.  If you need to buy the product locally and not order, you can call the 1-800 number on the bottle and speak to the company on their product.



__________________
ginny CVSA Moderator
0
wynnak

Avatar / Picture

Registered:
Posts: 549
Reply with quote  #14 
We also take a multi vitamin gummy with increased CoQ10.
__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.