advertisement
Reply
 
Thread Tools Display Modes
Old 06-02-2012, 06:28 AM #171
glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,855
15 yr Member
glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,855
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)

advertisement
Old 06-02-2012, 08:24 AM #172
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

Also, be aware there are two very similar sounding
products:

Neuropathy Support Formula
Nerve Support Formula

If it sounds too good to be true...well, that is your answer.

This list of ingredients and their cost if purchased separately
at the end of Neuropathy Support Formula's website is laughable.
It is exaggerated to make their expensive version look good.

That is not to say individually some of the ingredients may work or not for some people here. But it is important to understand your own body, get testing for B12 and Vit D at least (and B1 and B6 also if you want) before buying an expensive product.
We have had people here that tested low in B6 and B1. That is not as common as B12 and Vit D problems, however.
__________________
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 06-02-2012, 09:28 AM #173
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 just went to their website again... The Neuropathy Support formula:

They have changed their ingredients...the labels now read:
R-lipoic stablized instead of ALA.

I had a breakdown on the forums somewhere about their pricing claims...now I can't find it.

Suffice it to say, 5mg methylB12 oral costs around $4.00 a month from Puritan's Pride. (a brand I tested out as effective with blood tests, when it was newly offered.).-- not $13.34 as appears on that site.

Vit D3 5,000 IU daily -- at Puritan's 100 caps at about $4.00 or
4 cents a cap. Depending on their sales at the time you order.

I would say the herbs are useless...ignore those. Tiny amounts and not detailed as to size of each listed either. This is a common trick to look good... many supplements do this to impress potential customers.

Benfotiamine by Doctor's Best (a high quality company) at Amazon is $13.80/120...so at a day (600mg), a month's supply would be $13.80 and not $50 as claimed.

I suspect the R-lipoic was changed on the site, but its dose was not.
300mg a day of that is rather too much IMO. Its price on the list also reflects the old ALA... so I have to wonder if the labeling is correct or if the R form is even in the product. Not a good thing.

I am not going to do any further, because this illustrates enough how the website is deceptive.

So the bottom line is: If you have the money and think or know your PN is vitamin deficiency driven, you can decide whether you want to try it. But don't expect big improvements... as you may see some or none at all. (depending on whether you need this formula). 4 capsules a day puts you at 300mg of r-lipoic acid based on this label, and this may be too much for some people. Diabetics should montior blood glucose. Long term use of high dose lipoic acid may reduce the absorption of Biotin, and over time this may become apparent with side effects. Studies are still ongoing with this interaction.
And take it on an empty stomach for best absorption.

And ask for testing at your doctor's office since you are going there soon.
__________________
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.

Last edited by mrsD; 06-02-2012 at 11:25 AM. Reason: adding lipoic acid comment
mrsD is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Nervous (06-02-2012)
Old 06-02-2012, 10:33 AM #174
Nervous Nervous is offline
Member
 
Join Date: Jul 2010
Posts: 309
10 yr Member
Nervous Nervous is offline
Member
 
Join Date: Jul 2010
Posts: 309
10 yr Member
Default

OT: Before going to my doctor next week, I am putting together a list of things I want him to test for. Can he test for levels of Biotin?
Nervous is offline   Reply With QuoteReply With Quote
Old 06-02-2012, 11:37 AM #175
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

Yes, there is a urine test I believe. But you know, the reports on PubMed that I found for the two patients with loss of taste,
tested NORMAL on biotin and the doctors gave high doses anyway and they improved.

So the actual Biotin understanding remains murky. I don't think it is worth testing for, if the tests don't reflect biological resistance to it.

Here is a nice WebMD explanation, stating testing is not accurate.
http://www.webmd.com/vitamins-supple...entName=BIOTIN

I've been thinking about this quite a bit.... it could be some people here are marginal on biotin activity and that is contributing to their PN symptoms. It appears that biotin is very safe and inexpensive and worth a try. It would have to be high dose, and taken away from any lipoic acid or high dose B-complex because of the B5 content.

I just received my 5mg from my yearly Puritan's purchase. And I just increased to 10mg at night after 5 days of 5mg.
__________________
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:
Nervous (06-02-2012)
Old 06-02-2012, 11:42 AM #176
Nervous Nervous is offline
Member
 
Join Date: Jul 2010
Posts: 309
10 yr Member
Nervous Nervous is offline
Member
 
Join Date: Jul 2010
Posts: 309
10 yr Member
Default

^^I was surprised when you said that R-lipoic might affect Biotin levels. I guess I had a false sense of the "safety" of R-lipoic.

One really has to keep track of the big picture, i addition to looking into individual supplements.

Thanks, mrsD!
Nervous is offline   Reply With QuoteReply With Quote
Old 06-02-2012, 11:49 AM #177
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

There is no real proof yet of this interaction. However, it is suggested by animal studies so far.

None of the lipoic acid sites I visited mention it either. But the biotin sites do occasionally.

That WebMD monograph does not mention the lipoic acid either.
And it does not mention the biotin on its alpha lipoic acid monograph. So it is not easy to find this interaction.
__________________
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:
Nervous (06-02-2012)
Old 06-03-2012, 11:09 AM #178
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 Nervous View Post
^^I was surprised when you said that R-lipoic might affect Biotin levels. I guess I had a false sense of the "safety" of R-lipoic.

One really has to keep track of the big picture, i addition to looking into individual supplements.

Thanks, mrsD!
It is not a false sense of safety exactly.... since lipoic acid doesn't show toxicity itself. What is thought to happen is that the transporter system that moves it around is shared by lipoic acid, and B5, along with the biotin. What it is however, is that
one of the 3 that use that transporter gets blocked and therefore becomes ineffective because it can't do its job.

Normally our bodies make lipoic acid in small amounts all the time. It is when large amounts of any of the 3 or all of them are taken in supplement form, that the transporter system gets overloaded.
And keep in mind it is early days so far with this new discovery. That is why it is difficult to find information on.
__________________
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 06-03-2012, 11:21 AM #179
ginnie ginnie is offline
Elder
 
Join Date: Aug 2010
Location: Anna Maria Island Florida
Posts: 6,278
10 yr Member
ginnie ginnie is offline
Elder
 
Join Date: Aug 2010
Location: Anna Maria Island Florida
Posts: 6,278
10 yr Member
Default Hi MrsD

I hope you don't mind me asking some questions to you. You know alot about supplements, and I know next to nothing. My new pain specialist is also a Board Certified Physiatrist, a good thing from what I am reading. I have been put on a host of suppliments for the first time in my life, as I really don't feel well, and she has postponed any surgery, feeling that I am not strong enough in my immune system. I have 4 auto immune problems. I feel weird on these suppliments, and need to know if this is normal, or perhaps why I feel as I do.
The first thing is I am getting headaches. In my life, I can count on one hand how many I have had. Very few, now they are daily.
My appetite has increased, I do not need this as my activity level has dropped alot, and my weight is going up.
I feel shakey, and somewhat nauseated even if I space these pills out.
I am even more tired than ususal, and sleep is more inturrepted.
I am under alot more stress as I can't afford these suppliments either. In fact medicare/medicaid won't cover any. I am going to have to sell my home to exist. so I am not sure where all the symtoms are coming from. any information you have, I appreciate. headache is upon me now, and this is weird for me.
Every other day B12 shots, 1,000mgs.
Fish oil. 3,000-4,000 daily
CoQ10 100 mg. daily
Tumeric daily
B complex daily
Alpha Lipoic acid 600 mg. 2 x day
thanks for any in put. Stress may be all this is, I don't know. ginnie
ginnie is offline   Reply With QuoteReply With Quote
Old 06-03-2012, 11:39 AM #180
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 really don't know.... every other day for the B12 injections?
For how long... a week, 2 weeks, forever?

Are they cyanocobalamin? Some people can't handle them that often because of the cyanide in them.
Also if you are not converting to methyl active form, the cyano is useless.

Tumeric might cause nausea..if you don't take with enough water.

What dose of B complex is it? Many people find taking after breakfast is the best for this. It can upset the stomach.

The fish oil should be taken with food too.

Some people get heartburn from the old alpha lipoic acid... most of us here use the new R-lipoic stabilized, and that only needs 100mg a day. Much easier on the stomach. The old one is not absorbed well unless taken on an empty stomach.

I think you should discuss this with your doctor. Starting slowly one at a time, instead of all at once might demonstrate which things are bothering you.
__________________
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
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 08:13 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.