advertisement
Reply
 
Thread Tools Display Modes
Old 06-01-2012, 03:47 PM #1
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

I think it is VERY revealing that people never remain here and become productive members, sharing their experiences etc, and spending time with us, who ask this question.

We are very familiar with "shotgun" combination remedies or various other remedies that target PN that have considerable flaws... EVERYONE is different and a one fix for all just does not exist.

It is best to understand YOUR own PN... before starting any supplement regimen.
__________________
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.
mrsD is offline   Reply With QuoteReply With Quote
Old 06-01-2012, 05:59 PM #2
Dr. Smith's Avatar
Dr. Smith Dr. Smith is offline
Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
 
Join Date: Oct 2010
Location: Lost in Space
Posts: 3,515
10 yr Member
Dr. Smith Dr. Smith is offline
Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
Dr. Smith's Avatar
 
Join Date: Oct 2010
Location: Lost in Space
Posts: 3,515
10 yr Member
Default

Quote:
Originally Posted by mrsD View Post
I think it is VERY revealing that people never remain here and become productive members, sharing their experiences etc, and spending time with us, who ask this question.
Revealing of what, exactly?

Doc
__________________
Dr. Zachary Smith
Oh, the pain... THE PAIN...

Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE.
All opinions expressed are my own. For medical advice/opinion, consult your doctor.
Dr. Smith is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Sallysblooms (06-01-2012)
Old 06-02-2012, 06:28 AM #3
glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
15 yr Member
glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
15 yr Member
Default I suspect--

--that some of the people who ask questions like that are actually stealth marketers. (Don't know if that is exactly what Mrs. D is referring to, but there seems to be a sense of "why aren't you guys talking about this" to a lot of those kinds of posts.)
glenntaj is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dr. Smith (06-02-2012), mrsD (06-02-2012)
Old 06-03-2012, 12:03 PM #4
BobL BobL is offline
New Member
 
Join Date: Jun 2012
Posts: 4
10 yr Member
BobL BobL is offline
New Member
 
Join Date: Jun 2012
Posts: 4
10 yr Member
Default Mrs. D's comments on Neuropathy Support Formula

Thanks Mrs. D, your comments on Neuropathy Support Formula make sense. You asked if I had my B12 tested; I assume it was included in a wide battery of blood tests that my neurologist ran, all with normal results. Also I tried a B vitamin supplement for several months with no help noted. So I don't think Neuropathy Support Formula is for me and it is expensive as you noted.

I was borderline diabetic at the beginning of the year, I've since dieted and am down 40+ lbs. with much better blood sugar numbers. The neurologist thinks my high blood sugar may have contributed to my PN. I am also a regular Scotch drinker. So I will look into Benfotiamine per your suggestion and will discuss with my neurologist at my second visit which is this week.

Thanks, you have a lot of knowledge on the subject!
BobL is offline   Reply With QuoteReply With Quote
Old 06-05-2012, 12:35 AM #5
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

Quote:
Originally Posted by BobL View Post
Thanks Mrs. D, your comments on Neuropathy Support Formula make sense. You asked if I had my B12 tested; I assume it was included in a wide battery of blood tests that my neurologist ran, all with normal results. Also I tried a B vitamin supplement for several months with no help noted. So I don't think Neuropathy Support Formula is for me and it is expensive as you noted.

I was borderline diabetic at the beginning of the year, I've since dieted and am down 40+ lbs. with much better blood sugar numbers. The neurologist thinks my high blood sugar may have contributed to my PN. I am also a regular Scotch drinker. So I will look into Benfotiamine per your suggestion and will discuss with my neurologist at my second visit which is this week.

Thanks, you have a lot of knowledge on the subject!
I would really get your test results to see if you had B12 done.
It is not included in a regular testing panel, and needs to be ordered separately. Then as if that isn't enough, doctors don't always interpret the results correctly. You should be at 400 or above. So you need to press for the numerical results.

Continuing to drink with PN is problematic. I would try to stop.
here is a link to a discussion where alcohol is discussed:

http://neurotalk.psychcentral.com/thread104096.html
I would start at 300mg of Benfotiamine a day. And since you
are skirting that diabetes label, you might improve with 100mg of Lipoic acid Stabilized daily too. (Doctor's Best for both of these, and available on Amazon now.)

There is some evidence that Biotin helps with blood sugar as well. 5mg a day at a different time from the lipoic is inexpensive and worth trying. Puritan's Pride has this at very reasonable prices.
__________________
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.
mrsD is offline   Reply With QuoteReply With Quote
Old 06-05-2012, 12:44 AM #6
Nervous Nervous is offline
Member
 
Join Date: Jul 2010
Posts: 310
10 yr Member
Nervous Nervous is offline
Member
 
Join Date: Jul 2010
Posts: 310
10 yr Member
Default

Question: The label on my Doctor's Best Benfotiamine says to take it with or without food. Which is correct?

Thanks!
Nervous is offline   Reply With QuoteReply With Quote
Old 06-06-2012, 11:51 AM #7
BobL BobL is offline
New Member
 
Join Date: Jun 2012
Posts: 4
10 yr Member
BobL BobL is offline
New Member
 
Join Date: Jun 2012
Posts: 4
10 yr Member
Default MrsD thanks for your suggestions

MrsD,

Thank you for your suggestions. Responding in order:

1. I had my second visit with my neurologist yesterday. He had previously run a very extensive battery of blood tests, and he went over the results in detail. I am normal on everything and there must have been a hundred or so factors tested. B vitamins are fine also. His best guess is that since I had borderline diabetic blood sugar levels six months ago, that is the likely culprit. I have been dieting and exercising since the first of the year and am now down more than 40 lbs. and 60 on the blood sugar count. That plus Neurontin (you folks in this support group tend to call it gabopentin, I believe that's the generic name) seem to be offering me relief. He upped my Neurontin from 3x300 mg/day to 3x600 mg/day. But I am DEFINITELY FEELING RELIEF!

2. I read your link on alcohol and PN and it, like other research I've read, seemed to focus mainly on alcoholics, not just regular social drinkers. It also mentioned the poor diet that may be associated with alcoholism, and the resulting impact on blood chemistry. Since I am getting relief as noted above, my blood work is all spot-on, and I enjoy my couple of shots of alcohol nightly, I don't plan to quit or curtail it at this time.

3. My neurologist was fairly neutral on the subject of Benfotiamine but was not opposed to trying it. It's a lot more affordable that the Neuropathy Support Formula that I initially asked you about, and doesn't have the huckster marketing that the NSF product has. I've ordered two months' worth and was pleased to see that it can be had in bulk for under $100/year. I'll hold off on the lipoic acid and Biotin for now, but might try adding them in later.

I will advise how all of the above works!

BobL
BobL is offline   Reply With QuoteReply With Quote
Old 11-22-2013, 04:22 PM #8
Nana10x Nana10x is offline
New Member
 
Join Date: Nov 2013
Posts: 1
10 yr Member
Nana10x Nana10x is offline
New Member
 
Join Date: Nov 2013
Posts: 1
10 yr Member
Default Need sub for metanx

My husband has PN in his toes and takes the usual 2 capsules of metanx daily. They are so expensive that we are looking for a supplement recommendation if possible. I've read other thresds/post by you and i'm just a little confused. I guess I'd just like to know "which suplements, dosage, frequency and where to purchase the purest, quality contolled supplements" All the discussion of p5p and other products made me wonder which we should get. Thank you for helping poeple with this issue
Nana10x is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
mrsD (11-22-2013)
Old 11-22-2013, 04:35 PM #9
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

I'll give you the names of brands that are GMP and quality:

NOW (makes P5P)
http://www.iherb.com/Now-Foods-P-5-P...1&sr=null&ic=3

Solgar ( Metafolin) online mostly.
Doctor's Best:
http://www.iherb.com/Doctor-s-Best-B...3&sr=null&ic=1
this is a fairly new product and very affordable and quality.

Jarrow: (methylcobalamin).
Puritan's
Doctor's Best

Make sure you take the B12 on an empty stomach so it is absorbed properly.
And you don't need the high dose of methylfolate that is in Metanx. Start at 800mcg.

I am using the Costco generic now for my methylB12. It works out to 6 cents a day.
But I previously used Puritan's 5mg and was tested after 3months with very high levels. So I know that worked and was absorbed.
Methylcobalamin is making its way into stores locally, finally.
The other two less likely locally, and better online.
iherb.com and Amazon both have highly reduced prices.


Quote:
Originally Posted by Nana10x View Post
My husband has PN in his toes and takes the usual 2 capsules of metanx daily. They are so expensive that we are looking for a supplement recommendation if possible. I've read other thresds/post by you and i'm just a little confused. I guess I'd just like to know "which suplements, dosage, frequency and where to purchase the purest, quality contolled supplements" All the discussion of p5p and other products made me wonder which we should get. Thank you for helping poeple with this issue
__________________
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.
mrsD is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Lara (12-28-2022)
Old 01-10-2014, 10:21 AM #10
andybonse andybonse is offline
Junior Member
 
Join Date: Aug 2013
Posts: 22
10 yr Member
andybonse andybonse is offline
Junior Member
 
Join Date: Aug 2013
Posts: 22
10 yr Member
Default

For someone with small fibre neuropathy, caused by inflammation. No Autoimmune disease. Possible Epstein Barr Virus caused the Neuropathy in the past few years.

My condition is Ehlers Danlos Syndrome Hypermobility, it doesn't really effect me bar from the neuropathy, which is not caused directly by the genetic condition, but makes it easier for inflammation and viruses to damage them etc, which is why I believe I can heal.

Would this be helpful for regeneration of nerves.

Paleo Diet - All Organic Fruits, Vegetable and 100% Grass Fed Meats/Eggs.
Vitamin D 1000UI
General Multi Vitamin
Vitamin C 1000mg
Methylcobalamin 1000UG
Fish Oils 1.5-3.0mg EPA/D etc.
Aceyl L-Cartinine
COQ-10 100mg
Alpha Lipoic Acid 250mg
Benfotiamine

Please feel free to add suggestions and advice, I want to give my body the best chance of repairing my nerves, reducing inflammation to prevent further damage.

Last edited by andybonse; 01-10-2014 at 11:42 AM.
andybonse is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Peripheral neuropathy chinderm New Member Introductions 6 03-13-2017 03:55 PM
Peripheral neuropathy jgbtrans New Member Introductions 3 01-04-2011 04:30 PM
peripheral neuropathy mommab New Member Introductions 5 09-05-2010 03:17 PM
peripheral neuropathy madovi02 New Member Introductions 7 12-22-2008 08:51 PM
MG and Peripheral Neuropathy susanjpullen Myasthenia Gravis 2 11-24-2008 04:22 PM


All times are GMT -5. The time now is 06:50 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is 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.