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11-13-2010, 07:44 PM | #1 | ||
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Hello, my father (78) was receiving Chemotherapy injections for the treatment of his prostate cancer. Over the last 2.5 months he motor skills have plummeted. The neurologist believes it is CIPN. It is so scary, he has gone from fully functioning to completely unable to walk in such a short time. I am desperate right now because he is suddenly unable to live on his own. I have found a B-1, B-12 & Alpha-lipoic Acid supplement named "Neuropathy Support Formula" with references to dramatic improvements in the PN. Has anyone had any successes with this or tried this with no improvement? Any insight would be greatly appreciated!
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11-14-2010, 06:56 AM | #2 | |||
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Wisest Elder Ever
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I am having a problem accessing the ingredients' details on the web.
Can you put the amounts listed on your bottle up here, including the type of B12 (is it methyl version?). The studies on chemo induced neuropathy, used acetyl carnitine to help prevent the damage during the chemo and after: This thread on PN explains the supplements, their dosages and when to take them, including the carnitine. He should get testing for B12 and Vit D (often very low in seniors) as well. http://neurotalk.psychcentral.com/thread121683.html
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | ginnie (04-12-2012) |
11-14-2010, 05:17 PM | #3 | ||
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Hi Mrs. D -
The nutritional info is for 2 capsules: Vitamin B1 (Benfotiamine) 300mg Vitamin B2 (Riboflavin) 4mg Vitamin B6 (Pyridoxine HCl) 4mg Vitamin B12 (Methylcobatamin) 2000mcg Alpha Lipoic Acid 300mg Vitamin D (Cholecalciferol) 500IU Directions state to take 2 capsules twice daily. My Dad did have his B12 tested but the doctor said it was well within normal range...not certain what it was though. I ordered the vitamins last night and will start him on them as soon as i receive - the way i see it, it can't get much worse. I may also try giving him the Acetyl L Carnitine supplement as well. |
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11-14-2010, 05:52 PM | #4 | |||
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Wisest Elder Ever
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Quote:
I would expect this to be very expensive. Was it? If not, then I would wonder if it contains what it says it does! You can send me a PM and tell me if you don't want to post here. I am guessing about $60/month? It also should be taken on an empty stomach, because of the B12 content. Do the directions say that? If not, that omission is important. So follow the empty stomach recommendation I give for best absorption of the B12. The D is low, but in a mixture, I wouldn't expect it to be higher. He may need much more than these provide. But you will have to have testing to show that.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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11-14-2010, 08:58 PM | #5 | ||
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Quote:
And yes, it does say that it should be taken on an empty stomach once in the am and once in the pm. You stated that you don't think the "ratio" supplements are useful - it that because they don't contain enough of a certain vitamin? Also, do you think it would be helpful to supplement with the Acetyl L Carnitine? Like I said, I am totally new to all of this and it is absolutely killing me to see my Dad in this condition. I suppose we are lucky that he does not have any pain like many of the posters on this board - his is purely extreme numbness and no balance which has left him pretty much immobile. Thank you so much for all of your feedback, it is very much appreciated! |
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11-14-2010, 09:17 PM | #6 | |||
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Wisest Elder Ever
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This is the first mixed product with doses that appear useful.
Usually the mixed things are high in one thing and low in others, or vice versa. Yes, most definitely do the acetyl carnitine. Start at 250mg a day for week, if that goes well, with no side effects, increase by 250mg daily for a week until at least 1000mg a day in divided doses. Carnitine improves mitochondrial functions which can be damaged by chemo. The elderly should be taking B12 daily anyway... not just for PN. Some people complain of stomach upset from alpha lipoic acid. This may become a problem, because taking with food helps. And with that B12 in there, you can't take with food. This is the downside to mixed products. If you take them separately you would pay a similar price but could taylor some dosing if needed. But not everyone has stomach upset with the alpha lipoic. You'll just have to wait and see. Don't tell him, or the placebo thing will kick in and he may over respond, etc. If you have to take with food, you might have to buy extra methyl B12 and take separately.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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11-14-2010, 10:08 PM | #7 | ||
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mrs D - thank you SO MUCH for your input and recommendations. I will definately take your advice and keep you posted on progress!!
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04-09-2012, 08:27 AM | #8 | ||
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Quote:
I have just joined as a member of NeuroTalk. I have CIPN since 2 years ago after my chemo treatment. I am not taking any medication or supplements at the moment although my oncologist prescribed Lyrica for me. I did some research and understand that there are side effects as with any medication. I am looking for supplements to help relieve my PN. Before I stumbled upon this support group, I ordered Vitamin B-6 (Pyridoxine)100 mg and Acetyl L-Carnitine & Alpha Lipoic Acid 650 mg from Swanson Vitamins. I have also come across PN supplements from WSN and Neuropathy Support Formula both of which contain various supplements in a single capsule. I am unsure whether I should order these supplements from them as I am not sure of their effectiveness. I have dealt with Swansons before and find them reputable. Are there other supplements that I should take other than those I had ordered? I aplogise if I am covering old ground. Please excuse me as I am a newbie. Many thanks. |
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04-09-2012, 09:37 AM | #9 | |||
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Wisest Elder Ever
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The primary supplement in the literature for chemo damage is
acetyl carnitine. Here is a recent post similar: http://neurotalk.psychcentral.com/post867845-3.html Alpha lipoic acid is the OLD version with necessity for taking very high doses to get results. Only 1/2 the old type which is a mixture of left and right handed molecules is active in the body. There is a new one with improved solubility as well. So the ultimate answer is R-lipoic stabilized. Doctor's Best is the one I use and many others here as well. I don't like Swanson's at this point. I was using Doctor's Best Theanine this summer, and ran out and tried Swanson's, for a month. It really didn't do the same job the Doctor's Best does for me. So while Swanson's has some interesting things in their catalog, the SunTheanine they package was not as effective as Doctor's Best. You can buy brand names out of their catalog for most other things you know. But I find Amazon just as affordable with free shipping over $25 now. My comments earlier in the post are what I think about Neuropathy Support Formula. If you want to take that mixture and have the extra money for it... just take it on an empty stomach. It has the old alpha lipoic in it too. Keep that in mind.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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04-09-2012, 09:03 PM | #10 | ||
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Is this Neuropathy Support Formula something that would help for shingles-related neuropathy?
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