Hi:

I notice a number of posters are taking COQ10. Why? Was it perscribed? For what condition? Has it been effective? If so, how do you rank it's effectiveness? Do you notice or have you any information on quality and/or effectiveness relative to manufacturer? Any published studies on COQ10 and PD? Does your PD doctor know that you are taking it? Does he/she approve?

Thanks

Lloyd

hi lloyd--i have sent a private message to you. madelyn

Hi Lloyd, I have been taking Q10 for about 18 months now. My neurologist recommended 1600mg when I first began seeing her then. I only took 400mg daily until she told me again this Jan to take the max for PD. I now take 800mg. I buy it from Purtitain's Pride, it's expensive. When I last saw her this Jan, she did not think I have progressed. I guess I'm still early onset so I don't know why I'm holding my own, it could be because of the Sinemet and Mirapex which I don't take a lot of. I'm mostly symptom free. I was also taking tumeric when I saw her and she said to stop taking it, "it's toxic", don't know where she got that from. So I stopped the tumeric to keep her happy. I also take magnesium.
Does Q10 "work" for PD as has been claimed in the only two small studies that I've come across? I have no idea. As you may know, I also have been taking low dose naltrexone, 4.5mg LDN, for about 33 months which has been claimed to be neuroprotective for many brain disorders like MS, PD Alzheimers and has been shown to be neuroprotective in rodents at the NIH. My neuro told me not to take it when I first saw her, she knew nothing about it. I have not told her I continue to take it. LDN would fall into the same opioid receptor antagonist catagory as dextromethorphan which some people here take.
It's hard to determine or understand what to expect with my PD, are these extra supplements, Q10 or LDN, keeping me from progressing? Is it the Sinemet which has remained at the same dosage now for about two years and am I in the honeymoon? I don't know. It's hard to believe that I'm one of the very few PD's on LDN (I'm betting on LDN over Q10) who has been able to stop progression. I don't think enough time has passed to claim anything except I'm holding my own.
Ashley

LD-DM guy. Ashleyk put me onto the idea of morphinan drugs for arresting neurodegeneration when I read on the old Braintalk 1 forum about her apparent success with LDN and PD. After I read about Dr. J. S. Hong's work with these drugs in suppressing mouse brain inflammation by LPS at very low concentrations, and that DM was as effective as naltrexone, I simply went to the store and bought some DM cough preparation over the counter and began taking 5 mg every night before going to bed.

I began taking CoQ10 about a year earlier. This was in response to the preliminary clinical study by Shults in 2001. I am now taking 900 mg of Maker's Mark CoQ10 from Sam's Club each day, in additon to 450 mg generic controlled release carbidopa/levodopa and 100 mg generic amantadine prescribed by my neurologist.

I have progressed very little, if any, since beginning this regimen, have fully informed my neurologist of my DM and CoQ10 use, and he is delighted with my current status. So am I!

Robert

One reason I have held back on CoQ10 was expense. Plus I felt that the other things I was taking were likely having similar effects.

But it is expensive. I came across a form that purports to be much more absorbable and should be more cost effective-
http://www.jarrow.com/product.php?prodid=438

I don't have any research on it and don't necessarily recommend the product, but the company (Jarrow) has one of the best reputations in the business. One of the few I trust first before I verify. Still owned by the old man who started it and who has a reputation for protecting the quality of his products by forcing any supplier who cuts corners into bankruptcy. Pretty effective quality control

One thing I noticed in the product description is that, at least in this form, CoQ10 seems to be fat soluble. If so it would seem to be important to take it with a lipid, perhaps a shot of fish oil or EFAs. Otherwise a lot of money will be flushed away, so to speak.

NOW foods now sells a pure powder. "Now Foods uses pharmaceutical-grade, naturally-fermented (trans-isomeric) Coenzyme Q-10, manufactured exclusively in Japan."

28 grams costs only $40 at Iherb.com

That lasts 23 days, at 1200 mg per day. Not bad.

http://www.iherb.com/store/ProductDe...&pid=NOW-03158

Taking any neuroprotective is a tricky thing.Nobody knows what their rate of progession is.So how can we tell if our rate has been slowed.The solution to the problem would be a larfge phase111 trial.Why the government tells us they are interested in developing a neuroprotective and has not started a trial is beyond my imagination.

when husband was diagnosed in aug '04, we were told there was a phase 3 trial starting "any moment" utilizing mega doses of coq10--i think there are current ongoing trials using mega doses of CoQ10 for ALS, huntington's and alzheimer's, with doses up to 3000 mgm/day, though for those specific diseases, may be only phase 2 trials. Dr. clifford shults, the primary researcher for the small clinical trial using coq10 in PD reported in archives of neurology in 2002, died last yr. and had been ill for a while. i have no idea if that impacted the initiation of phase 3 trials for PD ...there have been reported problems with availability of coq10. for a very long time, there were 4 or 5 Japanese companies who manufactured coq10 and held the patents for the manufacturing processes (interestingly, one of the processes utilized tobacco leaves in the fermentation of their product). I am unsure if the status on manufacturing of coq10 has changed. In 1990, Merck patented 2 formulations of their statins (anti cholesterol drugs) with coq10 to address the depletion of coq10 from statin use, though the company has never exercised the patent. One explanation was there was not enough coq10 available for the millions of doses of statins that were being prescribed. I have read the company maintained the reason for the patent was to prempt any other company should it look like a good idea in the future to produce a statin with coq10. though the stated reason for the patent was to correct the depletion of coq10 caused by blocking the mevalonate pathway by statins. do not understand what they are waiting for--(sorry if i seem to continue to focus on statins --it is the area i research...)

In addition to coq10, my husband takes R+alpha lipoic acid. It reportedly "recycles coq10" reducing it from its oxidized form so that coq10 does not become a "pro-oxidant" instead of an anti-oxidant. this may be over kill , though if interested access the following:

http://lpi.oregonstate.edu/infocenter/othernuts/la/

AshleyK,
Your lady neurologist does not know much about curcumin when she advises you it is toxic.
The conclusion in
http://www.liebertonline.com/doi/abs...ournalCode=acm

is "Conclusions: Curcumin has been demonstrated to be safe in six human trials and has demonstrated anti-inflammatory activity. It may exert its anti-inflammatory activity by inhibition of a number of different molecules that play a role in inflammation."

Also, does she not realise it is present in the Indian diet in copious quantities. Does she also advise you never to eat curries!!!
I wonder how much more of her expensive advice is also wrong?
Ron