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Old 02-21-2013, 01:24 AM #1
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Default CoQ10 & small nerve neuropathy

Today I finally met a Doctor who was compassionate and caring! Update on me .. 2 years ago I was diagnoised with "Idiopathic" small fiber neuropathy by punch biopsy.My new Neurologist spent more then over an hour with me and was refreshingly honest. Because I am otherwise very healthy ,He will not accept my neuropathy as Idiopathic at this time. He wants to do more tests and said he will consult with a Neuromuscular Doctor at this Medical Ctr and will do some research this weekend. (wow) Ok Fast forward.. He recommends I take CoQ10 said to make sure I get the Ubiquinone form for Mitochondrial trtment. I have searched the internet and found this form CoQ10 very expensive. My question is does any one take CoQ10 for small nerve neuropathy, and what is the difference between Ubiquinone and Ubiquinol? The Doctor said to take 1000 mgs twice a day with a tsp of Olive Oil. I do not know anything about Coq10, but I read many PNers on here take it. This dosage seems like alot. Does anyone take Coq10 and how much do you take and does it help? I will wait for a response before I order it..Thank you in advance!
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Old 02-21-2013, 01:42 AM #2
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Lightbulb

That dose does sound very high.

Ubiquinone is the basic form. Ubiquinol is supposed to be the
activated form. Ubinquinol is still rather controversial and some
think it does not work well.

This link sells both, and has information you can read.

The new water soluble type, like Q-gel at this link enables lower dosing.
http://www.epic4health.com/whatiscoq10.html

Another brand out now that is more soluble is Qunol:
Walmart and Costco have this as well as Amazon.
4 months supply at 100mg a day is around $30.00
http://www.qunol.com/

Those really high doses of older CoQ-10 that does not have
the water solubilizing quality were used in treating some PD patients and some ataxia patients. That form needing olive oil, or some fat to go along with it, is not as current as the newer
solubilized types.

I think it is odd, that your doctor recommended such a high dose. I wonder if he knows about the newer forms?
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Old 02-21-2013, 11:40 AM #3
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Originally Posted by mrsD View Post
That dose does sound very high.

Ubiquinone is the basic form. Ubiquinol is supposed to be the
activated form. Ubinquinol is still rather controversial and some
think it does not work well.

This link sells both, and has information you can read.

The new water soluble type, like Q-gel at this link enables lower dosing.
http://www.epic4health.com/whatiscoq10.html

Another brand out now that is more soluble is Qunol:
Walmart and Costco have this as well as Amazon.
4 months supply at 100mg a day is around $30.00
http://www.qunol.com/

Those really high doses of older CoQ-10 that does not have
the water solubilizing quality were used in treating some PD patients and some ataxia patients. That form needing olive oil, or some fat to go along with it, is not as current as the newer
solubilized types.

I think it is odd, that your doctor recommended such a high dose. I wonder if he knows about the newer forms?
MrsD
Thank you for your response. Its sounds like my Neuro was right in recommending I get the Ubiquinone form. Not so sure now about the dosage tho. Maybe you are right about him possibily not knowing about the newer forms. This is the first Doc Ive seen in 2 yrs that actually talked to me about supplementation! I will call him to let him know about my concerns. Do you think I should get the ubiquinone form or is the Coq10 others use just as effective? I hope to get some relief soon.
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Old 02-21-2013, 08:16 AM #4
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Default Hi Marie

Hi, and I am sorry you have PN. I too have it and was the last person to believe these suppliments could help. I have taken coq10 for over a year now and there is marked improvement.
However your dose does seem high that the doctor recommended. I would call and ask if he said that, or meant 100mg.s 2 x day. When I did the research on this, that was a good dose. I would question taking that much. Mrs.D is very knowledgeable about these suppliments, and I would directly ask her as well.
The right combination of suppliments can work. A year ago, I was not walking very well. Now it is much better. Take care, and do the research as much as you can. ginnie
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Old 02-21-2013, 11:59 AM #5
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Hi, and I am sorry you have PN. I too have it and was the last person to believe these suppliments could help. I have taken coq10 for over a year now and there is marked improvement.
However your dose does seem high that the doctor recommended. I would call and ask if he said that, or meant 100mg.s 2 x day. When I did the research on this, that was a good dose. I would question taking that much. Mrs.D is very knowledgeable about these suppliments, and I would directly ask her as well.
The right combination of suppliments can work. A year ago, I was not walking very well. Now it is much better. Take care, and do the research as much as you can. ginnie
Hi Ginnie,
Thank you for responding, Im sorry you have PN too. .. glad to hear you are responding well to suppliments. Do you take the ubiquinone form, or reg
CoQ10? How much do you take a day? Im trying to find the "right combination" but it gets all so confusing and overwhelming. Dont want to take anything that is going to cause more problems (side effects).For now Im taking all the B's..B12 Methyl, Benfoti B1, B6 , ran out of Folate, mag, fish oil, R-Lipoic Acid , ALCarnitine but not everyday RLA & ALC make me jittery. wish I could take them more often, I beleive they are the supplements that may help the most. Is Coq10 a stimulant? Im wondern how I will make this work..Thanks again.
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Old 02-22-2013, 05:44 PM #6
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Default Hi Marie

I take the regular kind of Co Q 10, 100mg, twice a day. I never got any side effects from it at all. PN in general is definately better a year later. I was close to not walking at all. Now I am walking...something is working and I believe it is this suppliment and so does my doctor. I use the "finest" brand from Walgreens. Yes expensive, but worth it. I sure hope this works for you too. I had about given up, and was looking at a wheelchair. I take several other suppliments as well. Let me know how you do and what kind your doctor finally settled on. It is worth a try! ginnie
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Old 07-11-2013, 10:44 AM #7
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I take the regular kind of Co Q 10, 100mg, twice a day. I never got any side effects from it at all. PN in general is definately better a year later. I was close to not walking at all. Now I am walking...something is working and I believe it is this suppliment and so does my doctor. I use the "finest" brand from Walgreens. Yes expensive, but worth it. I sure hope this works for you too. I had about given up, and was looking at a wheelchair. I take several other suppliments as well. Let me know how you do and what kind your doctor finally settled on. It is worth a try! ginnie
Hi Ginnie
Im just seeing your response today. Glad to hear you are doing better! What else have you been taking besides the coq10? I am still strugglin with idopathic sfn. For me, neuropathy is mostly painfull sensations, there are days where I feel like giving up too. Im taking 300 mgs lyrica , cant go any higher because of side effects. It maybe helping a little but I still need more pain relief. How did your pn get better? Are you taking any medications for your pn? I was taking 100mgs of Jarrows unbqulinone (sp) Coq10 for a few weeks, but then I stopped because i didnt see any improvement and plus it made me jittery..I am taking other vits I got from MrsD incldg 2000mcgs of Methlycomb-B12 per day. I read you are taking 300mg of coq10 a day. Does it make you jittery? Maybe i will start taking it again but I hope 100mgs is enough to make an improvement. It sounds like your doing better, I hope you continue to do well!! Thanks for your response. Marie
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Old 07-11-2013, 04:43 PM #8
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Default Hi Marie

Yes I am better. There was a combination of things I have done, The vitamines were on top first. Then I use a compounded cream, Lidocane patches, and when it does get bad, I have a narcotics I can and do take. However I try very very hard not to take anything for pain. Tramadol is on hand too, but I don't think that works very well for PN. I don't have this condition as bad as alot of folks here. Only in my left foot, ankle and calf. I really had trouble walking last year, as I have degenerative joint disease in that same foot, with ganglion cysts, that have roots deep inside the ankle. Had two removed, and thats what started the PN. I now have two more, and they can't remove them for fear of making this PN worse. (or RSD)
I can't take lyrica, or Gaba. both tend to make me extremely depressed. I tried both of those several times and just couldn't do it.
I still limit the amount of walking I do, or I do get into some trouble with pain.
All in all much better than last year. Not sure what helped me the most. Sometimes I think taking less in the way of pain killers, lets your own body try to help. Wish I could put a finger on what worked best for me. I sure do wish you all the best, and that you get some relief. ginnie
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Old 02-21-2013, 09:38 AM #9
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Hi Marie.

Im not a exppert at all in supplements like Mrs D. I will tell you I found more than 300mg a day and I usually have to take it after eating a bigger meal like dinner.I started higher dose like your DR and it tore up my stoamch now 300 mg with meal I have no problems.
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Old 02-21-2013, 12:05 PM #10
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Hi Marie.

Im not a exppert at all in supplements like Mrs D. I will tell you I found more than 300mg a day and I usually have to take it after eating a bigger meal like dinner.I started higher dose like your DR and it tore up my stoamch now 300 mg with meal I have no problems.
Hi Mgneck
Glad you are having no problems with the ubiquinone! As MrsD stated, My Neuro is prbly not familiar with the newer forms. Im wondern if I could use the reg Coq10 and get the same results. If you dont mind me asking where you found 300mgs of the Ubiquinone and how much did it cost? Thank you so much..Marie
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