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05-16-2007, 12:18 AM | #11 | |||
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...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 |
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05-16-2007, 12:51 AM | #12 | ||
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Great post Steff, as entertaining as ever.
Brightened up my morning. Chris |
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05-16-2007, 12:42 PM | #13 | ||
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Junior Member
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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.
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05-16-2007, 02:46 PM | #14 | ||
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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 |
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05-16-2007, 03:53 PM | #15 | |||
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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 £70.00 a month.I will try to find out which brand it was for you if it helps.
Steff |
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05-16-2007, 05:51 PM | #16 | ||
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Junior Member
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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. |
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05-16-2007, 06:24 PM | #17 | ||
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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 |
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05-16-2007, 08:25 PM | #18 | |||
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Magnate
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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. |
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05-16-2007, 09:11 PM | #19 | |||
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In Remembrance
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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.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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05-16-2007, 11:24 PM | #20 | |||
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Member
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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 |
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