I am about one year in to having PSP. I tried Co-enzyme 10 and it seems to help my speech and I think a little clearer too.
There is a derivative called Ubiquinol which supposedly is one step along the metabolic pathway from Co-enzyme 10 and reportedly it is more efficiently used by the body.
Has anyone had experience of this please?
Also thanks to everyone for all of the very helpful posts.
My husband takes Life Extension Super Ubiquinol CoQ10 (100mg) which includes Shilajit fulvic acid twice a day. (breakfast and dinner). According to LEF, they claim up to 8 times more effective than regular CoQ10, He also takes 300mg CoQ10 from Kirkland (Costco). I am trying to get closer to the 1200mg used in the clinical trials. Shilajit's "main medical application now appears to come from its actions in benefit of cognition and potentially as a dietary supplement to prevent Alzheimer's disease."
Hey Liz, I started my guy on 600mg of CoQ10 when we thought he might be having a reaction to lipitor 3 years ago, then upped the dose after his PSP diagnosis, based on the German trial that indicated there was at least a short-term benefit. On advice of his neurologist, he is began taking 1800 mgs a day something like 18 months ago. Two years after diagnosis, the progress of the disease is obvious, but it is not as rapid as it sometimes is - we don't know whether the CoQ10 is working or whether we are fortunate. The trial at the Lahey Clinic in Massachusetts is due to end in December. I don't know when the results will be published, but we're very interested.
I don't know anything about the other forms - we just buy the brand on sale. It's generally pretty expensive here. No Costco!
Hi
Thanks for the helpful replies.
I am seeing my new Neurologist, for the first time, next week and I will discuss it with him too and then will post his comments here.
Thanks jillannf6. My partner tells me that my deterioration has plateaued this last two months since starting CQ10. HE says that my speech is clearer and that I think clearer since starting it. Before that my condition was nose diving very fast.
I cannot say that the CQ10 is the cause for this. I might just be in stable spell.
It would be good to hear more peoples experiences.
My neurologist, who is a specialist in PSP at the The National Hospital for Neurology and Neurosurgery said that the one test which shows benefit from taking Co-enzyme 10 was a study of only 20 people and that there was no evidence that it helped.
I understand that there is a larger study in the states which is due to publish its results in the next month or two. Let's see.
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A final note, for now, on CQ10 and Ubiquinol.
My latest reading has left me with these thoughts:
CQ10 is a lipid (fat) soluble enzyme. So it does not pass through the stomach wall easily and eating it with some fatty food helps.
Ubiquinol is an expensive derivative. Essentially the body converts CQ10 into Ubiquinol which is the substance it uses. Ubiquinol passes into the bloodstream far more easily. However it is prone to oxidation and so the capsules have to be airtight. This makes them expensive.
A study in Japan, on rats, measuring the CQ10 levels in the bloodstream found that Soya Bean oil triples the absorption of CQ10. They found an almost 300% increase in CQ10 absorption.
I can't find the original Japanese study comparing CQ10 with and without Soya oil showing the 300% increase against no soya oil and that the reason is that one part of the oil molecule is hydrophylic meaning that the CQ10 can dissolve in it and become emulsified aiding absorption.
Mt solution is to drink home made soya milk with each dose in the hope of tripling the absorption or put another way only needing 1/3 if the dose of this expensive supplement.
I do hope this helps.
It is my best stab as a non scientist!
Best wishes
Liz
• in reply to
Me and my partner have been talking and we thought I should say that he puts the words together and types them for me... but these posts are my thoughts - it is just too slow sometimes.
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