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Old 04-01-2012, 04:24 PM #161
Idiopathic PN Idiopathic PN is offline
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Quote:
Originally Posted by Nervous View Post
^^mrsD is better than a doctor. Who ever gets a straight answer from a doctor?
YES, I agree 120% to both your statements!!!

She is straightforward, objective, knowledgeable, informative, updated and compassionate.

I am very grateful to this community, to all the people who posts their experiences and share their specialties, to Glenntaj and most especially to Mrs. D who has always been there for everyone who needs her opinion

Thank you so much.
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Old 04-05-2012, 04:47 PM #162
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Thanks MrsD, I will try the epsom salts recommendation. Appreciate your help so much.
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Old 04-30-2012, 12:01 PM #163
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Lightbulb

Here is a PDF from Thorne supplements on PN.

http://www.altmedrev.com/publications/11/4/294.pdf

You'll see just about everything we discuss here listed on it.

Thorne products are detailed mostly to physicians for resale to
patients.
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Old 05-19-2012, 04:15 PM #164
Idiopathic PN Idiopathic PN is offline
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Default Doctor's Best Benfotiamine

I went to Amazon today to re-order the Benfotiamine, Acetyl L-Carnitine and R-Lipoic.

I noticed that there were 3 kinds of Doctor's Benfotiamine 150mg/120Vcaps.

1) Dr's Benfotiamine Benfo Pure from Japanese Benfotiamine
2. Dr's Benfotiamine Benfo Pure (without the words "from Japanese Benfotiamine")
3. Dr's Benfotiamine (Multi-Pack)

What I am currently taking is the Benfotiamine with the words "from Japanese Benfotiamine". I did not notice the different types of Benfotiamine the first time I looked up for this supplement. Which is the best version of Benfotiamine?

The brand I am currently taking for Acetyl L Carnitine is Source Naturals at 250mg. Should I just continue this?

I assume that Doctor's Best R-Lipoic Stabilized (featuring Bio-Enhanced Na-RALA) is still the best?

Thank you
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Old 05-19-2012, 04:38 PM #165
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Lightbulb

Sometimes Amazon has multiple listings. Usually one is the dominant one, and has all the reviews.

Some of the listings are not "Amazon" but outside vendors who charge more + shipping. Some listings are OLD. I am having problems seeing what you are seeing.
But I suspect all Doctor's Best is of Japanese origin.
Many other supplements come from Japan too... where most of the research and manufacturing occurs.

This is the one I bought recently: Couple of months ago
http://www.amazon.com/gp/product/B00...ls_o03_s00_i04

Click on this link and use this one. It is available for free shipping on orders $25 and over.
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Old 05-28-2012, 01:53 PM #166
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Lightbulb Biotin and Lipoic acid:

I've been researching Biotin lately, (for myself for some skin/nails improvement).

And I ran across this interaction with Lipoic acid. The following links explain it and it is complex, but worth looking into for the people here with PN and also taking lipoic acid:

http://www.geronova.com/content/lipoic-acid-biotin
Quote:
If supplemental biotin is desired by lipoic acid users it is likely better to consume biotin at least three hours after lipoic acid to insure both nutrients are maximally absorbed...Due to PK differences between p.o. lipoic acid and p.o. biotin, staggering the times of consumption should insure there is always sufficient biotin available to the apocarboxylases without competition or displacement by lipoic acid.
This article is from 2009, and things have changed in the lipoic acid world. R-lipoic is no longer expensive, or hard to find. And the comments at the end of the discussion are opinion only.--In fact now this company offers Stabilized R-lipoic NaRALA! I think the high dose Alpha racemic type now costs far more than the R-lipoic we use.
The article is written by a supplement manufacturer and reflects that
opinion of his own products. This is why I put up the other links here for biotin.


I take the lipoic in the morning and the biotin at bedtime.

Low levels of biotin can occur on their own, and are thought to be caused by a defect in enzymes transporting it.

http://en.wikipedia.org/wiki/Biotin

One of the symptoms of low biotin is PN type symptoms!
This I never knew, mainly because biotin is not thought to be commonly deficient.

http://lpi.oregonstate.edu/infocenter/vitamins/biotin/

So looking further I found this PubMed abstract, with 2 patients,
with loss of taste. One using Juvenon, the supplement for anti-aging with lipoic acid in it:

Quote:
J Am Coll Nutr. 2011 Jun;30(3):178-81.
Loss of taste responds to high-dose biotin treatment.
Greenway FL, Ingram DK, Ravussin E, Hausmann M, Smith SR, Cox L, Tomayko K, Treadwell BV.
Source

Pennington Biomedical Research Center, Louisiana State University System, 6400 Perkins Road, Baton Rouge, LA 70808, USA. frank.greenway@pbrc.edu
Abstract
BACKGROUND AND OBJECTIVE:

We saw 2 patients who lost their sense of taste, which was restored by pharmacologic doses of biotin. The key objective is to describe the 2 case reports and suggest a potential treatment for unexplained loss of taste.
METHODS AND DESIGN:

The first patient was a 67-year-old woman who lost her sense of taste taking Juvenon, a dietary herbal supplement containing acyl-L-carnitine, lipoic acid, calcium, phosphorus, and biotin 300 μg per day. The second patient was a 60-year-old man who lost his sense of taste after a sleeve gastrectomy for obesity.
RESULTS:

The first patient did not respond to 5 mg per day of biotin, but taste was restored with 10 mg of biotin per day. Biotin was prescribed based on information that lipoic acid bound to the biotin transporter. Baseline urine gave no evidence of a pre-existing biotin deficiency. The second patient did not have restoration of taste after taking biotin 5 mg per day for 7 weeks but did have taste restoration on biotin 20 mg per day. Neither subject had an abnormal biotinidase level.
CONCLUSIONS:

Further research into the relationship of biotin to taste is clearly indicated. Loss of taste was very distressing and significantly altered the quality of life for both patients. Since biotin up to 40 mg per day has been shown to be safe, a therapeutic trial of pharmacologic doses of biotin should be considered as a potentially curative treatment in patients who present with a loss of taste that has no obvious cause.

PMID:
21896875
[PubMed - indexed for MEDLINE]
from http://www.ncbi.nlm.nih.gov/pubmed/21896875

Biotin has no upper limit for toxicity (like B12) and therefore is easy to take. I am using 5000mcg biotin from Puritan's. It is fairly inexpensive too. They offer several types and doses. I take it at bedtime..no side effects no worries about food intake etc. Already it seems to be helping my skin on my arms which had a vague redness and occurred years ago from a reaction to the lake water + sunlight on a vacation. It also seems to be helping me sleep, which I didn't expect.

But I've been thinking that it might help with the body burning type of pain, or facial pain that some posters here report.
The connection to lipoic acid intake is mentioned on various papers, but a definitive connection hasn't been made yet.
But since many here are now using lipoic acid daily for long periods, it might be helpful to consider adding the biotin to it as well.

Also another benefit listed in the links above is a reduction in fasting
blood sugars. For those here with insulin resistance or prediabetes, this might be a helpful result. The doses need to be high, 5000, 10,000mcg a day.

Biotin is depleted by long term or repeated use of antibiotics.
Also the older anticonvulsants like phenobarbital, are listed as depleters. It is not known if gabapentin is in that group as yet.
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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; 05-28-2012 at 05:02 PM.
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Old 06-01-2012, 03:02 PM #167
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Default Neuropathy Support Formula

Hi all, new member, my neurologist diagnosed me recently with idiopathic PN and has me on Neurontin for the past few weeks, which seems to help a bit. I have a second visit in a few days and expect he may increase the dosage, I'm not having any problems with being groggy.

I have spent a bit of time searching this forum and see very little on the subject of an over-the-counter supplement called Neuropathy Support Formula. They are advertising VERY heavily and I see them as ads all over the Internet. The ingredients are a blend of a number of the B vitamins and other supplements discussed in this forum.

Has the group addressed this product, and if so, can someone please point me to the right thread? I have printed a copy of their ad and plan to take it to my neurologist at the upcoming appointment and get his opinion.
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Old 06-01-2012, 03:35 PM #168
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Quote:
Originally Posted by BobL View Post
Hi all, new member, my neurologist diagnosed me recently with idiopathic PN and has me on Neurontin for the past few weeks, which seems to help a bit. I have a second visit in a few days and expect he may increase the dosage, I'm not having any problems with being groggy.

I have spent a bit of time searching this forum and see very little on the subject of an over-the-counter supplement called Neuropathy Support Formula. They are advertising VERY heavily and I see them as ads all over the Internet. The ingredients are a blend of a number of the B vitamins and other supplements discussed in this forum.

Has the group addressed this product, and if so, can someone please point me to the right thread? I have printed a copy of their ad and plan to take it to my neurologist at the upcoming appointment and get his opinion.
Welcome to NeuroTalk:

We have several posts on this subject.
This product will only help those who need these nutrients.
The advertising implies EVERYONE needs them, and that is just not true.

Have you had B12 testing? Do you know the numerical result?
If you use the search function here, you'll find several threads.

This product will not be harmful in the long run, except to your wallet. So if you want to try, go right ahead. But I think it is best to know where you are, and if you have deficiencies that this will address.

The Benfotiamine may work if you have diabetes, drink alot or have a B1 problem. The ALA in it is the old version that is not well absorbed-- it needs empty stomach use. The methylB12 in it, requires you take it on an empty stomach. That is about it. The rest of it just duplicates
a multivitamin.
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Old 06-01-2012, 03:47 PM #169
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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.
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Old 06-01-2012, 05:59 PM #170
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Quote:
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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
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All opinions expressed are my own. For medical advice/opinion, consult your doctor.
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