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.

Thanks MrsD, I will try the epsom salts recommendation. Appreciate your help so much.

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.

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:hug:

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.

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
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:

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.

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.

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.

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.

Revealing of what, exactly? :Hum:

Doc

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.)

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.

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.

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?

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.

^^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!

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.

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.

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

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.

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!

Hi Mrs. D
 

What is the name of the one that has cynaide in it? Alpha Lipoic Acid? I simply will not take it with poisen as I have already been poisened with DDT. I am sure of this. I will copy your posts and give it to my doctor on tuesday.
I also have very very bad Gerds, Barretts esphagus is being watched carefully for cancer. which one causes nausea?
I have enough B12 shots for three months. don't know beyond that time frame. the CoQ 10 is 100 mgs. B complex is timed released put out by Finest Natural. Tumeric is 500 mg. Again, any and all informations i greatly appreciated. will copy your post now. ginnie
When given these things, no dangers were presented, possible side effects, or exactly what each one did. I only know I feel real weird, tired, more depressed nauseated, headache. thanks ginnie

Hi Mrs. D
 

looking at bottle of injectable B12. Is this cyanide? Called cyanocobalamin? 1000 mcg/ml
10 mil bottles.why the heck would a poisen be admisistered to a person already poisened with multipal auto immune problems? I don't understand. I had a direct response to DDT poisen from the blueberries in michigan during the 50's. I ate right off the plants proved to be sprayed. Also had epson barr at 9 years old. all kinds of stuff when I was little. She is a board Certified physiatrist. doesn't that mean she knows how the body works with absorption of these vitamins and supplements? very confused ginnie

Cyanocobalamin is in the B12 shot.

Are you sure about that every other day for 3 months?

That is extreme. Usually they are given often say, once a day for 7 days or every other day for 2 weeks, then once a week, or twice a month. Best to have blood work done in between shots to see if they are working. So the frequency is only in the beginning, and does not continue over time.

Cyanocobalamin is B12+cyanide ...it is a tiny amount but given so often, it might be hard on some people. Then there are those who cannot activate this synthetic form, and so it doesn't work right.

Methylcobalamin oral is much better IMO. OTC 5mg a day on an empty stomach, and no cyanide.

I'd clarify why the B12 so often by injection. There is another form for injection called hydroxocobalamin that does not have the cyanide portion. Methyl B12 is available in shots, but typically is made by compounding pharmacies and doesn't come in a multi use vial for self administration.

how often Mrs. D
 

I was given three vials, each vial lasts two weeks, so a month and a half ever other day. I go back on tuesday just after two weeks. I will report all, and I am sure glad I asked you. I have not felt right since starting any of it. I wondered if it was all in my head due to stress etc? I also Have SEVERE GERDS and do not want ANYTHING to increase my nausea, and heart burn. I am at risk right now to cancer. I take a double proton pump inhibibtor as it is. Stomach does not feel good, and I don't know if it is hunger sometimes or nausea. heart burn has increased this past two weeks also. I so much want to find a doctor to trust, and that isn't going to give me stuff that makes me worse. Two refills were given to me regarding the B12 injectable, so I do think she meant this as a longer therapy. My nails are peeling off the top, does this have something to do with why she wanted me on this? In general I feel lousy. I will bring all up to her, no question about it. I appreciate you MrsD. I am glad we have NT, to go to, to help us sort through things. thanks again ginnie:hug:

Good luck at the doctor. Hope you start feeling better! Yes, the Cyano B12 is really not needed. Doctors really should know this, but some do not.

I take Methyl. B12. I used to get shots because my level was SO low, then it was fine so I take it sublingually. Works great!

I have to be very careful with B6. Too little is bad but too much is bad for the nerves also. I always get tingling that lets me know. It is added to a couple of supplements but I never take it alone.

Hi Sally
 

Thank you. I will tell doctor all. what bothers me is that she is a Physiatrist, should she know about cyanide? Can't figure out why she would have an immune compromised patient taking it to begin with. I will get answers. thank you for helping me. I am glad I have this place to come to, and get my worries adressed. ginnie

You mean a Pyschiatrist? Can you see a regualar MD? An MD that knows about suppements? Integrative MD's are good.

No Sally
 

She is a board certified Physiatrist, not a mental doctor, all though I could use that too!. this kind of doctor works on a cellular level to try and restore health, and she is suppose to know about all kinds of nutrition and suppliments. That is why i questioned her, and this treatment, she should know about this. Someone who has a compromised immune system I just don't think should be taking cyanide in any form. She knows this. I have only seen her once, and we don't know each other well yet. I will see her every two weeks for awhile, and give her a chance. Look up this Physiatrist, she also is a pain specialist, that was my origional reason for finding a new doctor. Thanks sally, ginnie

I have a doctor's appointment this week and I suppose that, in order to get good readings on my tests, I should stop my supplements. The problem is that I do not look forward to days of foot and leg cramping.

Advice?

I don't believe that carnitine, or lipoic acid will show up on testing.
(unless carnitine levels are ordered, which they are not typically).

B12 will show false elevations, so stopping that for 3 or more days is advised. You should have some stored by now, and not suffer this hiatus.

Magnesium levels have a large middle area of "normal", but I would still take that to see if you are edging into "high" with your supplements. That would be useful to know. So if you want that result, keep taking what you are taking for magnesium.

B-complex will read on blood testing. So stopping that would be a good idea for several days. B6 is stored for several days and not all excreted quickly. The benfotiamine is also stored, but it might be in tissues and not the blood.

What tests are you planning on having? Iodine of course could affect the thyroid panel in some way.
Typically high vit C should be avoided, as it can affect some blood work results. I'd stop that for at least 3 days.

You will want a renal panel, to check your kidneys. That is important.

Oh, I hope this post came earlier before my annual physical exam. I should have stopped the Vit C. I am taking Vit C at 500mg a day.

However, since yesterday, I am taking 1000mg a day because I developed.
cancker sores

Thank you Mrs.D. Everyday, there is always something new that I learn from this forum.:hug:

Here is a link with all the potential problems...of high dose Vit C and tests/drugs.

http://www.mountainmistbotanicals.co...terference.htm

500mg might not be high enough... I don't know where the cut off is for it. The glucose testing is the most sensitive I believe.

This link clarifies Vit C and B12 interaction as not accurate with follow up testing:
from http://lpi.oregonstate.edu/infocente...ns/vitaminB12/

This is a new doctor, but their usual tests include a kidney panel, potassium, magnesium, calcium, etc. And a urine test.

The additional tests I will request are for Vitamins B1, B6, B12, D. Also test for uric acid (because of the d-ribose I'm taking).

What else do you recommend?

Sounds like a good beginning. I would assume they do liver panel too?

Some potassium may test high if the sample lyses (bursts) the red cells. This happened to me last time, because they used a butterfly thin needle to get my small vein. Doctors know about this though. It is very common to have factitious highs in potassium. Just warning you on that one.

Yes, I think they do liver as well. It's an annual physical kind of thing.

I'm glad I can keep taking the magnesium, although it hasn't been working all that well lately on the foot cramps. I guess I'll stop the multi-vitamin, too.

Thanks, mrsD!

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.

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

Thanks!

It is well absorbed either way.

Mrs. D....
I have been taking Doctors Best Benfotiamine 150mg's dailly (3 a day)

Also, been taking Source Naturals Methylcobalamin Vit B-12 1mg (2 a day

as well as Doctor's Best Stabilized R-Lipoic Acid (1 a day) (like you, more than 1 makes me a bit too anxious).

I take 3,000 IU's Vit. D3 daily (per doctor)

I felt my PN; especially the burning feet and ankles was a little less and had more energy than previously. (I have been on all the above for at least 5 months.)

The past few weeks have noticed my legs and groin have developed, at times, an ache, which is hard to describe. I think it might be muscle pain, not sure. This is making my walking more difficult. This is not every day; but a few times a week. There are times it improves during the day. This pain is something new and different, but is quite painful and am starting to worry my ability to walk is being compromised. I do use a cane for balance when going out. In the house, do not use the can as much because of short distances.

I do take meds daily for Edema of feet and legs; which seem to keep the swelling pretty much under control. Nothing has changed in this area so I do not think this has anything to do with the aching legs and groin.

Really would appreciate your thoughts on this?
Thanks,
Gerry