At the 2008 KDA conference, Dr. K. Fischbeck mentioned that Coenzyme Q10 (known as CoQ10 for short) was one of the substances that could be investigated as a treatment for KD.

Anyone interested in background information on CoQ10 could read the Wikipedia page at
Wikipedia page on CoQ10.

CoQ10 is believed to strengthen cells in patients with certain kinds of heart disease. The (totally unproven) notion was that it might do the same for nerve cells in KD patients.

I'd like to know if anyone has any newer or additional information on any such investigation of CoQ10, or if anyone has tried taking it as a dietary supplement. Thanks.

Dan, I take it every day and have for several years. I cannot say whether it helps or not, but it certainly hasn't hurt. My doctor recommended it even though my blood pressure and other vascular functions are normal.

Bruce,

What amount should be taken 200mg, 400mg, etc. I started taking it awhile back because I heard that when taking statins, it gets depleted. I have recently stopped taking pravastatin. I believe it was causing more than the norm muscle weakness. Anyone experience that with the statins? Been off 7 wks. now and have noticed strength coming back.

I would discuss this with your GP. I currently take 200 mg.

Discussing dosage with your doctor is an excellent idea. Most of the studies looking at CoQ10 for congestive heart failure use 50 to 60 mg per day.

I take 50 mg per day. Keep in mind that CoQ10 is pretty expensive, so obviously you don't want to take more than necessary.

Bruce, Have you notice a difference on how Charlie Horse affects you. I know that not having enough potassium affects our muscles. I was just diagnosed with KD 2 years ago. The 1st (mis-)diagnosis was ALS. I guess i was one of them that feel thru the cracks of the norm of diagnosing our disease. A mimicker. I've had painful episodes of muscle pains. I'm taking muscle relaxer and added extra dosage of Potassium. I was just only taking a daily combination of not even 1000mg. Way under what required for a "normal" person. Have you have the same problem? Thank you.

Fortunately, I have not had cramps in several years. Perhaps I don't have enough muscle left to cramp. :-)