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Stitcher
05-14-2007, 09:22 PM
Coenzyme Q10 Does Not Improve Parkinson's Disease Symptoms

Source: JAMA and Archives Journals
Date: May 14, 2007
http://www.sciencedaily.com/releases/2007/05/070514174229.htm

Science Daily — Small doses of the antioxidant coenzyme Q10 appear to increase blood levels of this naturally occurring compound in patients with Parkinson's disease, but does not improve Parkinson's disease symptoms, according to an article that will appear in the July 2007 print issue of Archives of Neurology, one of the JAMA/Archives journals.

Parkinson's disease is a neurodegenerative disorder characterized by tremors and difficulty with walking or other movements. The biological mechanisms underlying the condition are not fully understood, but researchers suspect a malfunction of the mitochondria, parts of the cells that help convert food to energy, according to background information in the article.

Coenzyme (CoQ10), an antioxidant sold as a dietary supplement, is also involved in mitochondrial processes. "Because of these functions, CoQ10 has attracted attention concerning neuroprotective actions in neurodegenerative disorders linked to mitochondrial defects or oxidative [oxygen-related] stress, such as Huntington's disease and Parkinson's disease," the authors write. Previous studies indicate that high doses of CoQ10 (1,200 milligrams) may slow the deterioration associated with Parkinson's disease.

Alexander Storch, M.D., of the Technical University of Dresden, Germany, and colleagues conducted a randomized clinical trial of a 300-milligram dose of CoQ10 in 131 patients with Parkinson's disease who did not have changes in motor functions and were on stable treatment for their condition. Those assigned to the treatment group took 100 milligrams of CoQ10 three times daily for three months, followed by a two-month "washout" period. The researchers assessed Parkinson's disease symptoms before treatment began, each month during treatment and again after the washout period. Blood tests were performed at the beginning of the study, after three months of treatment and after the washout period.

A total of 106 patients completed the full three months of the study--55 in the CoQ10 group and 51 in the placebo group. The compound was well tolerated overall, and the percentage of patients who experienced adverse effects--including viral infection, diarrhea and hearing loss--did not differ between the two groups. Blood levels of CoQ10 increased in the treatment group from an average of 0.99 milligrams per liter to an average of 4.46 milligrams per liter after three months.

"Although we demonstrated a significant increase in plasma levels of CoQ10 toward levels observed with high doses of standard CoQ10 formulations in Parkinson's disease and other disorders, our study failed to show improvement of Parkinson's disease symptoms and did not meet its primary or secondary end points," which were changes on scales that measured Parkinson's disease symptoms and their effects on physical and mental functioning, the authors write. "Our study further demonstrated that 300 milligrams per day of nanoparticular CoQ10 is safe and well tolerated in patients with Parkinson's disease already taking various antiparkinsonian medications."

"Since we did not find symptomatic effects of CoQ10 in Parkinson's disease, our study does not support the hypothesis that restoring the impaired energy metabolism of the diseased dopaminergic neurons leads to symptomatic benefits in Parkinson's disease," the authors conclude. "Future studies will need to explore the protective effects of CoQ10 at the highest effective dose (equivalent to about 2,400 milligrams per day of a standard formulation) over a long treatment period and in a large cohort of patients both sufficient to clearly define the protective potential of this compound in Parkinson's disease."

Arch Neurol. 2007;64:(doi:10.1001/archneur.64.7.nct60005).

This study was supported by a grant from the Deutsche Parkinson-Vereinigung eV (German Parkinson Association), Neuss, Germany, and MSE Pharmazeutika GmbH, Bad Homburg, Germany. The co-enzyme Q10 and matching placebo were formulated and packaged without charge by MSE Pharmazeutika.

Note: This story has been adapted from a news release issued by JAMA and Archives Journals.




reverett123
05-14-2007, 11:26 PM
First of all, I do not advocate CoQ10 because it is so expensive and I feel there are cheaper routes.

But this "study" has to be one of the greatest wastes of scarce funding I have seen yet. Consider:

1) CoQ10 is, to my understanding, touted as a neuroprotective NOT as a symptomatic reliever.
2) It is supposedly a high-dose and longterm benefit. So why did this group decide to do a tiny dose and 90 days study?
3) And they chose test subjects who were stable and had no motor problems and did not alter their medication? What did they look for, sudden leaping of tall buildings?

Of course there is a need for further study. "Throw money!"

JAMA published this drivel? The editor must be self medicating again.

Suffolkchris
05-15-2007, 02:07 AM
Didn't the previous two studies conclude that the optimum dosage per day for PWP was 1200 milligrams?

Also isn't one of the main claims for CoQ10 that it can boost energy levels, help ease the terrible fatigue that some of us suffer with PD. Yet amazingly no measure of this very important aspect appears to have been made.

My wife is a school teacher (runs a specialist unit for dyslexic children) she works long hours and very hard and despite being healthy gets very, very tired. She only takes 60mg of CoQ10 per day but is convinced that it makes a significant contribution to her energy levels and that it makes her feel less mentally tired. She keeps trying to get me to try it but I have had so many problems with horrible drug side effects that I need to build up my courage first (god that sounds pathetic). Have even imported shedfulls of the stuff from the US.

An interesting (very short, lol) paste from PD Pipeline web site:

The missing ingredient in the development of new therapies is the voice of the patient."
Quote by: Perry Cohen,
Project Director

Isn't this the point you keep making 123?


Strikes me therefore that it may have been more relevant to have measured energy level changes at the lower dose, but to look for functional improvements based on past info was ludicrous at the dosage level they used.

Chris

ol'cs
05-15-2007, 04:33 AM
I have NEVER heard a PWP say that they noticed a HUGE difference in symptom reduction with CoQ. I tried 600mg for about three months with Zippo, nada effects. This alone is one tiny opinion so it's meaning is moot, but give a PWP 30mg of Ritalin, or 600mg of l-Dopa and an immediate symptom reduction is seen; it's just not sustainable at "wash out", nor does repeated dosing seem to halt or reverse your "scores", we always see progression and maybe even quicker progression caused by toxicity from constant receptor "tweaking".
We don't know if we are any "better" than we would have been over time by attempting to quantify the effects of anti-PD drugs. To me , the only way of doing this is by taking daily PET F-dopa scans of at least 200 "dosees" against 200 "controls" and trying to find that many PWP who are able to participate in such testing would eat up billions of bucks that we don't have. An expensive, probably unworkable paradigm for what, the results of the study of ONE compound. I can't even imagine it.
What we need are fast, inexpensive, non-invasive, new paradigms for compound testing. Tests that show undoubted ability to give high sustainable activity in symptom reduction. Repairing the dopamine transporter is probably NOT going to be found in small molecule therapy, but instead in the realm of invasive surgical intervention.

reverett123
05-15-2007, 07:24 AM
The only thing I have found thus far that produces symptomatic relief for me (and the reason that the expensive CoQ10 hasn't enticed me) is the combination of acetyl-l-carnitine and alpha-lipoic-acid. Forty-eight hours and I see the difference in either starting or stopping it. Most reassuring for me is that it is repeatable. Now, I know, I know. I am intentionally omitting ldopa etc. :)

The purported effects of the combo are via action on mitochondrial function as are those of CoQ10.

With the possible exception of the fatty acids (fish oil etc), everything else seems to be a longer term leap of faith.

Has anyone else found any alternative supplements that provide undeniable symptomatic improvement in, say, a week or less?

paula_w
05-15-2007, 10:11 AM
I have never purchased COQ10 after 18 years with PD. That should explain my feelings on the subject.

paula

jeanb
05-15-2007, 12:02 PM
I do take coq10 and hope it's neuroprotective. It was never going to provide symptomatic relief.



Has anyone else found any alternative supplements that provide undeniable symptomatic improvement in, say, a week or less?

I don't think it happened in a week or less, but since I've begun eating dark berries (blueberries & blackberries) AND taking berry extract supplements, my neuropathic pain has virtually disappeared. I'd suffered from this pain for 4 years, and for me it's nothing short of miraculous to be virtually pain free these days (ok I still get a twinge on the odd occasion, but that's all :p )

oyster
05-15-2007, 06:34 PM
produced a noticable effect for me within a week. it improved my short term memory and mental energy. i aloso get a good effect from a raft of anti-oxidants, c, e, bioflavinoids, coq10, berry extract, etc. it is expensive however i think nutrition is vital. ive only been dx last october and am trying everything in the hopes of delaying the use of pharmacueticals and their attendant side effects.
in the past couple weeks two people have asked me about me being stiff and slow:( i told them i had parkinsons, ojne knew what it was the other didnt.

reverett123
05-15-2007, 07:47 PM
beware of pill fatigue. define a core group that you can stand to take for a very long time and be ready to toss the rest on the days when you just can't stand to look at another pill. been there.

olsen
05-15-2007, 10:40 PM
in aug 04 when husband first diagnosed, neurologist,MDS he consulted recommended coq10@1200 mgm/day. there was noticeable difference within one week of taking coq1`0 at this dose--less stooped posture, less "frozen" facial expression, recovery of his sense of humor. husband also reported "feeling better" and less fatigue. It may be comparing apples to oranges since we feel my husband's PD is related to his having taken a lipophilic statin, lipitor. statins deplete the body of endogenous coq10, so in his case, supplementing with it was an attempt to replenish the body's stores of coq10.
on the other hand, there are many studies showing lowered coq10 levels in platelets and serum in all patients with PD--these results and the theory that PD was the result of mitochondrial dysfunction were what prompted Drs. Beal and shults to undertake the coq10 study reported in 2002.

steffi 001
05-16-2007, 01:18 AM
...on the subject of Q10. I do not personally leap on the bandwagon of the latest drug hype [ie...do not consider myself gullible enough to believe every new claim that is presented concerning new drug theories]. However,I have tried Q10....
YES ...you need a high dose
YES...it is expensive as it should be purchased in it`s purest form.
AND YES ....it gave me increased energy,fatigue being one of the MAJOR downsides of PD as someone so very aptly stated in an earlier reply.
Sadly I couldn`t afford to keep buying it or I would have continued.I have replaced it with a cheaper,but equally effective energy boosting tonic.

OK...Q10 is no wonder drug...but then again I don`t believe I ever read anywhere that "wonder drug " was it`s claim. But anything that makes even the smallest difference to your daily coping with pd has got to deserve a place in the PD SUPPLEMENT HALL OF FAME hasn`t it?
What suits one does not necessarily suit another,heck we are all taking different pd drugs for heavens sake,because of our individual make up.

The dextromethorphan which was mentioned in another tread has made a remarkable difference to the severe dystonia I was suffering.Unfortunately I have to keep buying disgusting tasting cough medicine in order to continue my dosage as dextromethorphan isn`t on the UK drug list,therefore cannot be prescribed in tablet form.

These two recommendations suited me.They might equally be capable of turning someone else into a "teenage mutant turtle."

Articles presenting both sides of the coin are necessary in order to keep a balance on things.We can then come to our own conclusions.
After all...I daresay a couple of pints of Guiness and the company of someone who makes me laugh and stimulates my mind has pretty much the same powerful effect as Q10 but somehow I don`t think that the sight of an innebriated 40 something year old mother of two,weaving around the house in a happy, but drunken stupor would go down very well with the social services.

And as a parting shot....A kinesiologist once advised me to take fish oil capsules...stating that I would feel the benefit.Well I`m afraid the thought of downing 8 giant sized, pea greencoloured, foul smelling, iccky tasting bullets every morning ,turned me into a gibbering wreck.

Steff
x

Suffolkchris
05-16-2007, 01:51 AM
Great post Steff, as entertaining as ever.

Brightened up my morning.

Chris

Kathie
05-16-2007, 01:42 PM
Jean B-- You mention your neuropathic pain virtually disappearig with dark berry supplementation. I am curious if your pain is like the pain my husband, diagnosed with PD for 3+ years experiences. It's in his right arm only, and is not there when the arm is in use, but only when the arm is at rest. He describes it as a pins and needles / burning sensation. It is worse / most noticeable at night when he's laying in bed trying to get to sleep and it mostly disappears by the early morning hours, but reappears once he is up for a bit. His neurologist initially thought it was not PD related but after having been through lots of nerve and muscle testing, physical therapy, chiropractic care, etc., nothing has helped it. It began it's first minor appearance shortly after being diagnosed with PD and has become a greater pain over time. It is in the arm that is most affected by the PD.

therese
05-16-2007, 03:46 PM
I have never been under the impression that CO-Q10 claimed to improve PD symptoms, but that possibly it is neuroprotective and might provide more energy for a pwp which I definitely feel it does. I just want to pose a question as to how one knows what brand(s) are more effective. My pwp is currently taking the Vitamin Shoppe brand (store located nearby)...but, I have, at times, noticed various other brands mentioned, e.g.,
Vitaline, iherb, and Puritan's Pride (which seemed to be rated highly by some). I am curious as to whether it was rated highly based on its being less expensive...being more effective...or both. I sent for a Puritan's Pride catalogue which I just received today and most definitely, it is a lot less expensive than what we're now paying for the Vitamin Shoppe CO-Q10...and, in fact, they are now "running" a 70% off sale which makes their prices all the more appealing. My inclination is to order from them, but before doing this, I wanted to pose the question, here, as to the quality. I guess I'm one of those people who feel that, for the most part, you "get what you pay for" so that I am a bit leery. I would appreciate any information that anyone chooses to give me pertaining to the different qualities of CO-Q10 and, in particular, any information related specifically to Puritan's Pride.

Thank you so much...
Therese

steffi 001
05-16-2007, 04:53 PM
It is a while ago since I took my Q10 so I cannot remember the providers name.However..the pharmacist who recommended it said he would only provide me with the purest form available and in the uk that was costing me in excess of Ł70.00 a month.I will try to find out which brand it was for you if it helps.
Steff

TheatreChick93
05-16-2007, 06:51 PM
Just my 2 cents.

I started on the 1200mg from Vitaline when I was first dx in Nov 2004. took it for about a year b4 I could not afford it any longer.

After a month of being off of it I noticed a huge decline in my energy level. So, I started buying the BJ's brand...I take 1200 mg a day. My energy level sky rocketed! I ran out one time for a week and again my energy level dipped. So, at least for me, it helps with my fatigue....which I consider a symptom of my PD.

I am a huge advocate for "whatever works!" Everyone is different.

Anyway, that's my opinion.

therese
05-16-2007, 07:24 PM
Thank you so much for your responses, Steffi and Janice...very helpful...and Steffi...I WOULD appreciate knowing the provider's name that your pharmacist recommended to you. That's what I'm looking for....the purest form...thanks so much, both of you.

Therese

cyclelops
05-16-2007, 09:25 PM
I have peripheral neuropathy, autonomic (pretty bad) and sensory and a movement disorder....everything is still 'idiopathic'. I have to wait until they figure out what this is. I am on an antiparkinsonian drug, but do not carry a parkinsonian diagnosis.

On Co-Q10. One of my kids is a professional athlete and they test her for Co-Q10. It is banned as performance enhancing. That may not be a bad thing if you're sick. It must do something.

I guess one just has to do homework on it and make a personal choice.

On the fish oil and flax seed, I can't swallow the pills without them getting caught so I drain them into food and eat it.

Only problem is, I am not consistent with stuff, only getting things down several times per week.

reverett123
05-16-2007, 10:11 PM
This is an area virtually unregulated so you have to go on reputation. My own choices include NOW and, particularly, Jarrow. The latter has a new formulation that sounds like it might be worth investigating. From the label:

"Q-absorb is a completely natural proliposome lipid soluble delivery system clinically shown in humans to increase Co-Q10 levels up to 400 % (3.2x) over baseline and is 3-4 times better absorbed than chewable Co-Q10 tablets. Co-Q10 supports heart function as a component of the electron transport system, and as an antioxidant protects mitochondrial membranes and cholesterol from oxidation.*

Jarrow Formulas Q-absorb restores Co-Q10 levels reduced or depleted by use of statins.*

Jarrow Formulas Co-Q10 is derived from fermentation and consists only of the natural trans configuration, the same as is synthesized by humans. Jarrow Formulas supports clinical research on Coenzyme Q10. "

That absorption rate would represent a big step forward.

Also, keep in mind that other things boost mitochondrial function. Though still not cheap, Alpha Lipoic Acid and Acetyl-L-Carntine do so and offer additional help with oxidation and blood sugar etc. I am sure that there are others.

steffi 001
05-17-2007, 12:24 AM
Just as an afterthought...if it is energy boosting supplements that you are after,an alternative to Q10 would be an excellent tonic.I have posted a few weeks ago,about my results with a tonic called Metatone.It is a fraction of the cost of Q10, easier to swallow being in liquid form,and gives me heaps of energy.However,I am aware that it is not available in the States but there must be an equivalent.Reverett will know.Meanwhile...will still find out about the Q10 brand.
x

ps...ahem...I must confess Therese,that I don`t use a spoon...if I did there would be more liquid on the floor and none on the spoon by the time it reached my mouth...so..er...I just unscrew the cap and hazhard a guess at how much to swallow..which perhaps is NOT the best idea.
Still..I am here..bouncy like Tigger despite PD ,still smiling...still hopeful...still dusting myself down after difficulties...so I must be doing something right.

x

reverett123
05-17-2007, 06:37 AM
I had been meaning to follow up with you on the Metatone. I did look it up and it is mainly a strong mix of electrolytes. Like a strong "sports" drink. That is interesting because I haven't run across anyone doing serious experimentation with that.

I do recall, however, Ron Hutton posting about a Parkie who had taken an antibiotic that had knocked out his PD symptoms for the duration of treatment. It was simply penicillin BUT they had added potassium to it. Potassium, of course, is one of the primary electrolytes. You may have stumbled (PD joke!) onto something.

In addition to giving you such energy, how does it seem to affect your other symptoms?

ashleyk
05-17-2007, 08:51 AM
I have been taking Q10 for about 18 months at the urging of my neurologist. She said to take the max of 1200 mg but I only took 400 mg up until this Jan. when she again told me to take 1200 mg. So now I take 800 mg. It's a big expense at these amounts. I've been buying my Q10 and a few other supplements from Puritain's Pride which, I believe, have good prices. I can't say Q10 does anything for me. Since starting Sinemet about 30 months ago which "fixed" my tremor, I manage very well except for poor sleep. I have also been taking low dose naltrexone (4.5 mg) for about 34 months. I don't seem to have progressed much or at all but it's hard to tell as time goes by. Do either of these two drugs (Q1 or LDN) work? Maybe, they are both out of pocket expenses but worth it for now. At least with LDN and now dextromethorphan, there have been lab studies at the NIH led by Dr. Hong (see PubMeb) that show that PD can be simulated in rodents to show dopamine cell loss. They believe dopamine cell loss is caused by activated microglial neuroinflamation. They also show that low levels of naloxone (ldn) and DM can protect dopamine cells and significantly slow progression.
From what I've read about Q10, we all seem to have decreased amounts as we age. So I guess it helps to take it but at what amount? In the German study, it seems they didn't go far enough and also include a group that would take 1200 mg alongside the 300 mg and control group. At what amount is it pointless and maybe harmful to take too much Q10? If the blood levels showed a leveling of Q10 at a certain dose, does it make sense to take extreme amounts above that?
Ashley

therese
05-17-2007, 11:45 AM
Thanks to Cyclelops and Reverett for your input re: CO-Q-10...and Steffi...not only for your input about COQ-10 and Metatone, but also for a good laugh when you described "how" you take the Metatone...SWIG, SWIG, huh?? Now we can call you "STEFF THE SWIGGER...OR, PERHAPS EVEN STEFF THE SWINGER!!!! From what I've read of your "posts", "swinger" seems apropos!!! Thanks, again.

Therese

olsen
05-17-2007, 04:37 PM
remember reading that coq10 must be taken with a fat for absorbability--the reason the original study reported by Drs. Shults and Beal utilized a compound of coq10 with vitamin E (manufactured by vitaline formulary). Tishcon is reputed to be another manufacturer of coq10 that is readily absorbable. friend who is a pharmacist told us that Sam's coq10 is "pretty absorbable".
Problem with too much coq10--with excess, theoretically it may become a pro-oxidant (though have been told by a neurologist that excess coq10 just becomes a sugar in the body). Alpha lipoic acid re-cycles coq10 in experimental conditions--it is not clear whether this happens in physiological conditions--husband does take alpha lipoic acid

steffi 001
05-17-2007, 05:30 PM
Thanks for your reply...and I am glad to have raised a smile.I am writing this reply with a chuckle as I have never been called a Swinger before...and I am not certain where you are from [which country] but here in the UK a Swinger is a term given to folk who purposefully swap partners at parties and well....disappear for extra marital "fun." :eek: :eek: :eek:

This is sooooooooooooo funny.
Therese...I do believe I could "swing" from a chandelier after my dose of metatone but believe me...That is the ONLY swinging I`ll be doing.LOLOL
I think if any guy saw me at a party waving my car keys [cos I do believe that is how some of these parties operate...you all throw your keys in a tub and then dip in..and whoevers keys you draw..well..there you go]if a guy saw me wobbling his way he would run a bloody mile!
Lurch from the Munsters has nothing on me when I`m off my meds.

Oh Therese..thank you so much for the return giggle.
Bless you
xxx

Reverett...I have today,bought a buster size bottle of Metatone.And yes...still downing it in my own style.I feel fabulous on it. I daresay that these days,my fatigue comes more from emotional strain rather than physical.I am active for most of the day and I ,MEAN PHYSICALLY ACTIVE...cutting hedges in dykes...walking the dogs,mowing an acre of lawn...digging....very little holds me back at the minute...so although I still have on/off periods..the "on"times are REAL QUALITY. I am as bright as a button.


x

reverett123
05-17-2007, 07:20 PM
"if a guy saw me wobbling his way he would run a bloody mile! " Especially if you had that Metatone gleam in your eye! :D :D :D That would make a great commercial, wouldn't it??

But back to our topic I suppose.

I know you freely make use of the Metatone, but think a minute. How much is in a bottle and how many days does a bottle last for you?

This really is interesting in that the electrolytes are central to cell function.

therese
05-17-2007, 07:23 PM
Steff...so glad to have given you a giggle/chuckle just as you gave me. Now, as for "swinger"....hmmmm...I just may have "put my foot in it" with that term. I think your definition of that term takes it just a "step further" than what I intended when I used it...you know...just someone who really enjoys a good time and enjoys providing a good time for others. I think I'm getting in "deeper" with my explanation...so...just take it that I mean you're a "good time"...good fun person. How's that for an attempt to "get out of hot water!!! ...and all this evolving from your explanation to me that you SWIG Metatone!!!!! LOL Thanks for the laughs, Steff...the "best medicine".

steffi 001
05-18-2007, 08:36 AM
Therese...first of all...BIG HUG and I agree..Laughter is the best medicine so assuming that I`ve given you a good dose of laughter..and you`ve given me one...maybe we should bottle and market ourselves !!!!
However...in my case I would need a warning in huge great letters;
IT IS DANGEROUS TO EXCEED THE STATED DOSAGE.
Reverett.The bottle I have just bought is 500ml.
The CORRECT dosage is one to two 5ml spoonfuls two or three times a day.

So I figure on MY dosages..the bottle will last me about a day and a half :o
"No? "
Ok/...I`ll try to be sensible.I am intrigued too about these electro thingies.Can you put it into language that someone like me can understand ....really simple so I can get the hang of what these electro thingies do.
I promise to take the correct dose from NOW so that I can give useful feedback to you if that`s what is needed.
Thanks for your interest.

From
THE SWINGER :D :D :D

therese
05-18-2007, 10:12 AM
Oh, ha ha, Steff..."maybe we should bottle and market ourselves...and your "caution"...IT IS DANGEROUS TO EXCEED THE STATED DOSAGE!" Maybe we could market our product under the name "SWIGS FOR SWINGERS"...Of course, I'm not too sure whether or not I should be included in that title since our definitions of "swinger" seems a tad different! Oh, nevermind...I'll "allow" myself to be included. Please believe me...I'm not always this silly...just when someone else is and I seem to "catch" it!LOL Actually, I am usually quite serious...too serious most of the time. I think that's the reason, though, that I'm enjoying our "exchanges".
On the more serious side, now...was it not you who told me that you would pursue the name of the provider of the CoQ-10 that your pharmacist recommended? If it was NOT you, then please find out anyway!!! LOL

Take care, Steff
Therese

JACKMANA
05-18-2007, 11:01 AM
Can this be the same tonic I used to be given as a child (1950s)? :p A vile tasting red liquid which used to stain the cup in which it was given. :( I was told it was full of iron as I was pasty-faced & thought to be anaemic. Has some company just bought the name & changed the composition? Or is this the same Metatone? :confused:
I'm still here & apart from PD reasonably OK physically - so maybe it did some good. The taste & smell are with me still: bad luck those who have to take it!! I just hope it works for you.:Heart:

Suffolkchris
05-18-2007, 11:50 AM
Steff...so glad to have given you a giggle/chuckle just as you gave me. Now, as for "swinger"....hmmmm...I just may have "put my foot in it" with that term. I think your definition of that term takes it just a "step further" than what I intended when I used it...you know...just someone who really enjoys a good time and enjoys providing a good time for others. I think I'm getting in "deeper" with my explanation...so...just take it that I mean you're a "good time"...good fun person. How's that for an attempt to "get out of hot water!!! ...and all this evolving from your explanation to me that you SWIG Metatone!!!!! LOL Thanks for the laughs, Steff...the "best medicine".

Therese

Steff is not exaggerating. Whilst her explanation of "swingers" is very entertaining it is also exactly how the word is now used in the UK.
Sad misuse of a lovely word but also sadly true.

So the "Metatone Swiggers" is probably better than the "Metatone Swingers".

However Steff is yours a large bunch of keys?? lol

Chris
(UK)

reverett123
05-18-2007, 02:13 PM
From http://emc.medicines.org.uk/emc/assets/c/html/DisplayDoc.asp?DocumentID=16047

METATONE contains Vitamin B1 (Thiamine hydrochloride Ph Eur) 500 micrograms, Calcium glycerophosphate Ph Eur 45.6 mg, Potassium glycerophosphate 45.6 mg, Sodium glycerophosphate 22.8 mg and Manganese glycerophosphate NFX 697 micrograms in each 5 ml.

Vitamin B1 is self-explantory. The other four are minerals called electrolytes. They are vital to life. Let levels get too low and you die. Poor diet, heavy sweating, dysentery, etc are all ways you can lose them. Athletes are vulnerable which is why "sports drinks" are popular. As for PD, there are tons of references to them as gatekeepers that let things in and out of the cell wall. Ion channels.

From the same source:

Vitamin B1

Vitamin B1 is essential for proper carbohydrate metabolism and plays an essential role in the decarboxylation of alpha keto acids. Vitamin B1 deficiency may lead to the clinical condition known as Beri-Beri.

Glycerophosphates

Glycerophosphates were introduced on the grounds that lecithin contains phosphorus in the form of the glycerophosphate radical and that glycerophosphates would therefore be a source of phosphorus that would be more easily assimilated by the tissues, particularly by the brain. Phosphorus is essential for most metabolic processes. As calcium phosphate, phosphorus is a major constituent of bones and teeth. In addition phosphates are a major constituent of all oils and as adenosine phosphates, play an essential role in energy liberation and utilisation.

Calcium

Calcium is a major component of bones and teeth and is necessary for the clotting of blood, the integrity of many cells, especially those of the neuromuscular system and for cardiac function. The consequence of decreased calcium levels in its extreme includes convulsions, tetany, behavour and personality disorders, mental growth retardation and bone deformities, the most common being rickets in children and osteomalacia in adults.

Manganese

Manganese is required for the synthesis of the mucopolysaccharides of cartilage, glucose utilisation, steroid biosynthesis and for the activity of pyruvate carboxylase.

Sodium and Potassium

Sodium is present as the sodium ion in all body fluids and in particular in extracellular fluids, whilst potassium as the potassium ion is largely present intracellulary. Together, sodium and potassium control many cellular events, with a critical role in maintaining fluid balance and in muscle and nerve activity

So were you serious about how a bottle would last under your present methods?

BTW, in general this seems to be fairly safe stuff.

Maureen
05-18-2007, 04:18 PM
I meant to ask this question yesterday, but time got away from me. Have any of you seen Andrew Lessman on HSN? He sells his own line of supplements and he has a few that look interesting. One is called Urgent Energy and sells for $10.90 for 30. It contains royal jelly , green tea, Guarana extract, ashwagandha (an herb commonly used in Ayurveda, holistic health system of India) as well as high levels of B-complex vitamins. It also provides standardized extracts of several herbs traditionally used throughout the world to help maintain energy, combat fatigue and provide a balanced sense of well-being. (I am quoting that part).
He has another supplement called CoEnzymeQ-10 Plus - 90 Mg. which sells for $249.90 for 360ct. This formula is supposed to include 400 mg. Vitamin C and high levels of B-Complex vitamins.
One more is called Andrew's Five Favorites $24.90 for 30 capsules. This one contains Coenzyme Q-10, alpha lipoic acid and N-Acetyl Cysteine. Also included are molecules from green tea and red wine: EGCG from green tea and resveratrol from red wine. They have customer reviews and the reviews were all very good from the people who tried the supplements and said they definitely had more energy. I have seen some of you mention the alpha lipoic acid as being beneficial to you. My husband had been to a doctor in NYC who practiced both Ayurvedic and Western medicine. She gave Rich the Ashwagandha to start out with for his Parkinson's. However, there have been so many mental issues with him that we ended up needing a psychiatrist so we did not have much time to give ashwaganda the chance it may deserve. Sorry for the long post, when you get a chance, maybe check out the HSN website or Andrew Lessman's website. Probably there are products equally if not better that may be less expensive. Just wondering what you guys think.
Maureen

steffi 001
05-18-2007, 06:05 PM
Therese..yes it was little ol` me who said I would try to find out the make.It will have to be next week now as the pharmacist is not available til Monday but will attempt to remember.Glad you are enjoying this chat!!! It pays to let your hair down and go "off the rails " from time to time.Well that`s my excuse...lol
If you really want a laugh at my expense read my thread on the Hopi Ear Candles. Now that was some evening.

Jackmana...apparently this tonic has been around for some time,yes...so it could be the same one but the taste isn`t so bad .
You might also have taken Minadex in the past.
My sister and I used to have to line up for Minadex...Haliborange...Halibut oil capsules and Syrup of figs every morning before school.
And my mum always cooked fish on a Friday and delighted in telling me that it was BRAIN FOOD.
Well er mum....I have something to tell you.
It didn`t do MY brain a fat lot of good. lolol
xxx

therese
05-18-2007, 10:07 PM
Steff...I remember, well, reading your post about Hopi Ear Candles. I was new to the forum at the time, but I was immediately "cued into" you as a person who has the unique distinction and ability to inject humor into a very serious area we all know as Parkinson's Disease. You may or may not remember that I am NOT the one with pwp but rather, I am the carepartner of a one...and I just find that being here with those who are pwp's has given me what I had hoped it would...a better insight and understanding of the disease and of those who suffer with it, and I'm so grateful to have found this place.

...oh, and Steff...I think your brain is "fattingly" good!!!

Therese

Sasha
05-18-2007, 10:47 PM
Well, what do you expect? Makes sense....As a Vitaline customer (when I can afford it - a rather irregular occurance), I received this in my email today:

Closer Look at a New Study on CoQ10 for Parkinson’s Disease Reveals Faults with Study Design

GREEN BAY, WI, May 21, 2007—A new study reported in the Archives of Neurology published online (May, 14, 2007) suggests that CoQ10 may not provide benefits to individuals with Parkinson’s disease. These findings contradict results from earlier studies involving a high purity CoQ10 supplement, Vitaline® CoQ10.1,2 Richard M. Delany, M.D., FACC, and founder of Personalized Preventive Medicine, finds that a closer review of this latest study design reveals several important weaknesses, including the use of a short study duration (3 months) and a low daily dosage (300 mg).

One earlier 16-month multi-center, randomized, parallel-group, placebo-controlled, double-blind study, published in the Archives of Neurology, found CoQ10 supplementation reduced the progression of Parkinson’s Disease as measured by the Unified Parkinson’s Disease Rating Scale (UPDRS) – a scale that evaluates severity of the disease. The most dramatic results were seen in the group taking 1200 mg/day (the highest dosage), who experienced a 44% less functional decline compared to individuals receiving placebo.1 Another study, published in 2004, examined the safety and tolerability of escalating dosages of Vitaline CoQ10 (up to 3,000 mg daily). This study discovered that blood levels of CoQ10 reached their peak at 2,400 mg dosage, thereby suggesting increased potential clinical benefit at this higher dose.2

“Although this new study utilized a nanoparticular CoQ10, there has been no correlation between a nanoparticular dose and a traditional CoQ10 dose. The 300 mg dose utilized in this study might be ineffective simply because it is a very low regimen for PD.”, states Dr. Delany.

The second point to consider is the study duration of only 3 months. According to Dr. Delany, “Neurodegenerative disease studies typically span between 6 months to several years. Six months may allow researchers to establish a trend or to evaluate the safety of a product, but three months will not be sufficient to establish benefit.”

Although the clinical findings were not positive, the results may be attributed to poor study design. Further analysis using a more effective dosage level and duration may confirm efficacy.

1. Shults CW, Oakes D, Kieburtz K, et al. Effects of Coenzyme Q10 in Early Parkinson Disease. Arch Neurol. 2002:59:1541-1550.
2. Shults CW, Flint Beal M, Song D, Fontaine D. Pilot trial of high dosages of coenzyme Q10 in patients with Parkinson's disease. Exp Neurol. 2004 Aug;188(2):491-4.

Dean Draznin Communications, Inc.
Dean Draznin
641-472-2257
dean@drazninpr.com

JACKMANA
05-19-2007, 06:37 AM
Steffi,
Thanks for that. It was definitely Metatone. Was Virol part of your regime? It was a malty syrup & by far the best health supplement of the time. Fish on Fridays, roast on Sundays, left-overs Mondays (bubble & squeak, shepherds/cottage pie, rissoles). Happy, healthy days!!!!!!

steffi 001
05-19-2007, 11:55 AM
...and so lively too.I have to reply to so many people so I pray I don`t miss anyone out.
Therese...Yes I do remember you and I am so very glad you are finding some support here.You must be a wonderful carer to invest all this time into finding out how you can best help your PWP.I am afraid I am rather a butterfly brain....so I find that what I lack in intellect,I can hopefully compensate for by my quirky "take" on life.I don`t get down too often and I have to say this disease has taught me a whole heap of things on how to tackle the not so good times....and humour wins hands down.
I am tempted to recount my escapade with an industrial floor polisher..even more bizarre than the ear candles...but may just give you a laugh.So keep a lookout.:)

Reverett...thanks for the information. I will spend some time absorbing what you have written but for now...no...I wasn`t serious about how long a bottle would last me but still don`t use a spoon.:eek: I will tell you when I have finished my present supply and maybe you can get a better picture.I have to say though..it is really making a difference.

Jackmana. VIROL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!
OMG!!! I remember that stuff but wouldn`t take it.Mums used to dip dummies into it didn`t they but I never had a dummy [soother/pacifier for you American folk]
but my mum put it on a spoon.YUKKY STUFF.
As for the meals...oh how true your list is.My mum could make a chicken last a lifetime!!! And she made Oxtail soup too...I believe you can`t buy oxtail now.And braising steak cooked in a pressure cooker with homegrown carrots and onions.She was so clever at making cheap cuts of meat taste divine. Oh you have sent me down memory lane. Lovely.

Chris????????????? Steff the Swigger is a great alternative to Steff the Swinger.And do I have a large bunch of keys?
Someone as witty and sharp as yourself...well....
You can have my keys anyday.
:eek: :eek: :eek: lolol

ps What would you like to unlock ;)

Whoops..I`m just in a mischievious mood.

:grouphug:

therese
05-19-2007, 12:57 PM
Steffi...Here's what I think about whose who possess the "art of humor", e.g., "butterfly brains" as you described yourself. I firmly believe that humorous people have to possess a very keen intellect and that humor is not so much a compensation for what one lacks in intellect but rather another aspect of intelligence. Therefore, do no underestimate your own intellect, Steffi. Of course, who am I, you might ask, that what I say holds any credence??? Suffice it to say that I have been on this planet long enough to have been able to determine what I've said, here, to be a reality. I am a former teacher who has known some very humorous students whose intellect was superior...and I always felt that it was as a "result of their superior intellect that they were so witty...very quick-witted that just came spontaneously. My pwp is one who tends to do as you do, Steff...puts herself down as to her intellect (which, I might add, is quite good) and feels that she has to overcome her lack of intelligence with her wonderful sense of humor. I have tried to convince her that her very quick-witted sense of humor is only made possible by her very high-level intellect...and so it is that I'm attempting to do the same for you. I know...who asked me to go on this "tirade"...but, I have noticed that you tend to downplay your intelligence and I just wanted to "put you straight" on this!!! LOL

I am eagerly awaiting the "tale" of your experience with the industrial floor polisher, "butterfly brain"!
I just realize how strange it is that I keep writing things not really related to the topic of CoQ-10 as was my original intent. I should apologize to all of you for having gotten so sidetracked...but, I have an idea that you would agree with me about Steffi so that you may not mind that I have written to and about her as I have. While I have the opportunity, I want to thank all of you for helping me to fulfill my original goal for being here at this place, i.e., to gain more knowledge and insight into PD so that I will be a better carepartner to my pwp...thank you.

Therese

Stitcher
05-21-2007, 03:36 PM
Closer Look at a New Study on CoQ10 for Parkinson's Disease Reveals Faults with Study Design, According to VitalineFormulas.com

Monday May 21, 8:15 am ET
http://biz.yahoo.com/prnews/070521/aqm058.html?.v=10

GREEN BAY, Wis., May 21 /PRNewswire/ -- A new study reported in the Archives of Neurology published online (May, 14, 2007) suggests that CoQ10 may not provide benefits to individuals with Parkinson's disease. These findings contradict results from earlier studies involving a high purity CoQ10 supplement, Vitaline® CoQ10.(1)(2) Richard M. Delany, M.D., FACC, and founder of Personalized Preventive Medicine, finds that a closer review of this latest study design reveals important weaknesses, including the use of a short study duration (3 months) and a low daily dosage (300 mg), and failure to use the clinically proven CoQ10 product, Vitaline CoQ10.

One earlier 16-month multi-center, randomized, parallel-group, placebo- controlled, double-blind study, published in the Archives of Neurology, found CoQ10 supplementation reduced the progression of Parkinson's Disease as measured by the Unified Parkinson's Disease Rating Scale (UPDRS) -- which evaluates severity of PD. The most dramatic results were seen in the 1200 mg/day group (the highest dosage), who experienced a 44% less functional decline compared to individuals receiving placebo.(1) Another study, published in 2004, examined the safety and tolerability of escalating dosages of Vitaline CoQ10 (up to 3,000 mg daily). This study discovered that blood levels of CoQ10 reached their peak at 2,400 mg dosage, thereby suggesting increased benefit at this higher dose.(2)

"Although this new study utilized nanoparticular CoQ10, there has been no correlation between nanoparticular dose and a traditional CoQ10 dose. The 300 mg dose utilized in this study might be ineffective simply because it is a very low regimen for Parkinson's Disease," states Dr. Delany.

The second point to consider is the study duration of only 3 months. According to Dr. Delany, "Neurodegenerative disease studies typically span between 6 months to several years. Six months may allow researchers to establish a trend or to evaluate the safety of a product, but three months will not be sufficient to establish benefit."

Although the clinical findings were not positive, the results may be attributed to poor study design. Further analysis using a more effective dosage level and duration may confirm efficacy.

(1) Shults CW, Oakes D, Kieburtz K, et al. Effects of Coenzyme Q10 in
Early Parkinson Disease. Arch Neurol. 2002:59:1541-1550.
(2) Shults CW, Flint Beal M, Song D, Fontaine D. Pilot trial of high
dosages of coenzyme Q10 in patients with Parkinson's disease. Exp
Neurol. 2004 Aug;188(2):491-4.



Vol. 59 No. 10, October 2002
Effects of Coenzyme Q10 in Early Parkinson Disease
Full- (http://archneur.ama-assn.org/cgi/content/abstract/59/10/1541)

Evidence of Slowing of the Functional Decline

Clifford W. Shults, MD; David Oakes, PhD; Karl Kieburtz, MD; M. Flint Beal, MD; Richard Haas, MB Chir; Sandy Plumb, BS; Jorge L. Juncos, MD; John Nutt, MD; Ira Shoulson, MD; Julie Carter, RN, MS, ANP; Katie Kompoliti, MD; Joel S Perlmutter, MD; Stephen Reich, MD; Matthew Stern, MD; Ray L. Watts, MD; Roger Kurlan, MD; Eric Molho, MD; Madaline Harrison, MD; Mark Lew, MD; and the Parkinson Study Group

Arch Neurol. 2002;59:1541-1550.

Background Parkinson disease (PD) is a degenerative neurological disorder for which no treatment has been shown to slow the progression.

Objective To determine whether a range of dosages of coenzyme Q10 is safe and well tolerated and could slow the functional decline in PD.

Design Multicenter, randomized, parallel-group, placebo-controlled, double-blind, dosage-ranging trial.

Setting Academic movement disorders clinics.

Patients Eighty subjects with early PD who did not require treatment for their disability.

Interventions Random assignment to placebo or coenzyme Q10 at dosages of 300, 600, or 1200 mg/d.

Main Outcome Measure The subjects underwent evaluation with the Unified Parkinson Disease Rating Scale (UPDRS) at the screening, baseline, and 1-, 4-, 8-, 12-, and 16-month visits. They were followed up for 16 months or until disability requiring treatment with levodopa had developed. The primary response variable was the change in the total score on the UPDRS from baseline to the last visit.

Results The adjusted mean total UPDRS changes were +11.99 for the placebo group, +8.81 for the 300-mg/d group, +10.82 for the 600-mg/d group, and +6.69 for the 1200-mg/d group. The P value for the primary analysis, a test for a linear trend between the dosage and the mean change in the total UPDRS score, was .09, which met our prespecified criteria for a positive trend for the trial. A prespecified, secondary analysis was the comparison of each treatment group with the placebo group, and the difference between the 1200-mg/d and placebo groups was significant (P = .04).

Conclusions Coenzyme Q10 was safe and well tolerated at dosages of up to 1200 mg/d. Less disability developed in subjects assigned to coenzyme Q10 than in those assigned to placebo, and the benefit was greatest in subjects receiving the highest dosage. Coenzyme Q10 appears to slow the progressive deterioration of function in PD, but these results need to be confirmed in a larger study.

From the Department of Neurosciences, University of California–San Diego, La Jolla (Drs Shults and Haas); Veterans Affairs San Diego Healthcare System, San Diego (Dr Shults); Departments of Biostatistics (Dr Oakes) and Neurology (Drs Kieburtz, Shoulson, and Kurlan and Ms Plumb), University of Rochester School of Medicine and Dentistry, Rochester, NY; Department of Neurology and Neuroscience, Weill Medical College of Cornell University, New York, NY (Dr Beal); Department of Neurology and Wesley Woods Center, Emory University, Atlanta, Ga (Drs Juncos and Watts); Parkinson's Disease Research, Education and Clinical Center–Veterans Affairs Medical Center (Dr Nutt) and Oregon Health and Science University (Dr Nutt and Ms Carter), Portland; and the Departments of Neurology, Rush Presbyterian/St. Luke's Medical Center, Chicago, Ill (Dr Kompoliti), Washington University, St. Louis, Mo (Dr Perlmutter), The Johns Hopkins University, Baltimore, Md (Dr Reich), University of Pennsylvania and Parkinson's Disease Research, Education and Clinical Center–Veterans Affairs Medical Center, Philadelphia (Dr Stern), Albany Medical College, Albany, NY (Dr Molho), University of Virginia, Charlottesville (Dr Harrison), and University of Southern California, Los Angeles (Dr Lew). Dr Shults and Mr Meese are coinventors in a pending patent application. The application is jointly owned by Enzymatic Therapy, Inc, Green Bay, Wis (owner of Vitaline Corp, Ashland, Ore), and The Regents of the University of California.

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