That is a good idea.

Keep the B12 and Vit D (were you tested? so you know how much to take?) If you don't want the D3 supplement, get some sun each day.

Keep the Lysine (to see if you have viral problems). And the acetyl carnitine (mito damage).
These major ones hit the big areas that are most commonly damaged or having problems.

We also have to understand "high".... the essential fat in flax oil, has to be consumed in some quantity daily. We cannot live without it. So what is "high" exactly in the studies? 5 grams? 10 grams? One capsule of the oil is typically 1 gram with about 40% ALA (alpha linolenic acid) in it. I don't think that is "high" for anyone who has to be eating it and is not typically. So understanding doses is also important.

My Vitamin D was 48 or 43. I didn't get my B12 tested.

Funny you should mention the Lysine. As soon as I stopped all my supplements (except my multiple vitamin), I woke up with an entirely new foot pain, so I have been adding back 500 mg per day of Lysine. My burning sensation continues to spread, with or without supplements. I don't yet have the kind of pain that some of our members have, but I fear where this is headed.

So the Vit D you'd need is only about 1000-2000IU daily of D3.

I don't know what to say about the burning. For me it seems linked to what I eat. Some spicy things do it to me. Peppers, potatoes, and some tomato products (but not all). And it took me a long time to find this connection too.! I found a salsa with mangos/peaches without Jalopenas in it and I am fine. If I buy another brand...I can get burning.

I don't have alot of pain either, but I do have some arthritis in my left ankle. I use Salonpas patches on it some days and my strong magnets on it too, because it is very targeted and not general all over discomfort. Weather too really bothers me...long LOW pressures and I can suffer until the Highs come. Like today, I am feeling pretty good, but all last week was a downer.

I'm pretty baffled by my symptoms. I don't have a good sense of what's going on. Stress is certainly bad for me. And the pain in the bottom of my left foot seems to be always there, to one degree or another. The burning has spread, over the past 10 months, to my lower thighs and arms. I have arthritis in my knees (a longstanding condition, pre-dates my SFN diagnosis). And, of course, I struggle with fatigue. Don't know if the fatigue is brought on by having to cope with the pain symptoms, or if the fatigue is a "stand alone" symptom of the SFN.

Recently, I have increased frequency of urination. That was probably the biggest motivator for tapering off the supplements.

Well, you would need more urination for clearing the supplements. The B's and C often cause increased urine output and that is normal.

Increased urination, also comes from glucose problems. Diabetes... and fatigue is a huge early symptom too.

What is very alarming is when urination gets LESS... this is reflective of worsening kidney functions.

So it might be a good idea to get a free glucometer and test yourself during the day and night. You might find your answers there. Keep a log to show fasting morning, 1.5 hr after breakfast (keep track of carbs), before and after lunch, after dinner, before bedtime. One Touch is the one I use because the strips are not affected by others sugars you consume or dextrins which are commonly in foods today. The other Glucometers use a different chemical system which may give false highs. One Touch may read high after high Vit C consumption, high aspirin, or gout, but it only measures glucose.

I will look into that.

However, I am slender and probably below average weight for my height, and have never been told I was anywhere near in danger of diabetes. I don't indulge in a lot of sweets and I am a complex carbohydrates kind of person.

Alot of thin people are diabetics. Look at Mary Tyler Moore for example...thin all her life!

Not every heavy person gets diabetes either. There are many heavy people who don't have it.

Diabetes is mostly a genetic thing, with autoimmune triggers, and some lifestyle contributions. Very complex...no one rule for everyone.

So, where do I get a "free glucometer"? The drug store? Or have I misunderstood something here?

One Touch has a free offer. You do have to have an RX to claim the coupon, which they email you.

FreeStyle will send you the free machine without RX, with 10 free strips to get started...but it is the other chemical type, and measures other sugars present besides glucose. You then need an RX to get strips cheaper etc, but you can buy them both, machine and strips without RXs cash in US.

The One Touch ultra mini I have varies in price from 15-19.99 depending on where you go. WalMart and Target tend to be lower.

https://www.onetouchdiabetes.com/offers
This offer took 3 weeks to come for me...which I found was a long wait (right after Xmas).

FreeStyle from Abbott:
http://www.myfreestyle.com/index.html

The deals from Abbott are better...but remember they are competing against One Touch which has some advantages over them.

Both of these mini-meters are inexpensive now. Mine is very easy to use. I got an Rx from my doctor, who is watching me closely and wanted a daily log...which I found very revealing personally! My highest sugars are in the morning fasting...called the "dawn phenomenon".

Neuropathy Support Foumula
 

Hello,

My husband was diagnosed with Parkinson's Disease in January 2011. He initially started taking azilect, but quit taking the drug due to the long-term side effects. He is now doing a number of things to address the disease, e.g. vegan diet, chi kung, alexander technique, running, etc. A friend has recommended the Neuropathy Support Formula that has been discussed previously on this blog. What do you think?

It cannot hurt. But realize that unless you get testing, you won't know if B12 is an issue for you.

The Benfotiamine in it is also useful, but no in every patient with PN.

This supplement tends to cost more than buying the ingredients separately.

R-lipoic acid (stabilized)
 

More discussion on R-lipoic acid:

http://neurotalk.psychcentral.com/thread159210.html

We all can always learn something new...and this thread illustrates THAT!;)

Another thread with discussion of R-lipoic acid stabilized:
http://neurotalk.psychcentral.com/thread130991.html

Coenzyme Q10 (CoQ10)
 

Coenzyme Q10 (CoQ10) is present primarily in the mitochondria.

In a thread on this site, it has been suggested that "damaged mitochondria are at the heart of many forms of [Peripheral Neuropathy]."

CoQ10 generates energy in the form of ATP. "Muscle and nerve cells are big users of ATP."

Statins are known to cause peripheral neuropathy and they are also believed to lower CoQ10.

CoQ10 functions in every cell of the body to synthesize energy, and supplementation can help heart, brain, gums, etc.

It is fat-soluble and best taken with meals containing fat. Some have advised to take it with the fattiest meal of the day for maximum absorption.

"Synthesizing CoQ10 is a complex, 17-step process that requires multiple vitamins and enzymes," according to Ross Pelton.

Recommended dosages range from 30 mg to 300 mg or higher.

"CoQ10 has an excellent safety record."

Related Article: Bioavailability of CoQ10 by Dimitri Papadimitriou, Ph.D.

Vitamin C for Peripheral Neuropathy Overlooked?
 

I just finished skimming this thread for mention of Vit-C. I didn't see much, and those who said they take it, don't take much, e.g., one person said they only take 500 mg.

The reason I ask is because I just got bloodwork done on Thursday, and the company which does it has a flyer listing all the Nutrients, along with how common the deficiency is, plus "What It Does."

Vitamin C:

Is that a typo?

What are therapeutic doses of Vitamin C?

I usually take 1,000mg to 1,500mg/day. One time I took about 7,500mg.

Most of the talk about Vit-C I've seen is about its immune system help and antioxidant value, not its mitochondrial support or nerve system support value.

I take 500mg a day Ester C.

Vitamin C is showing promise in RSD... as an antioxidant, to prevent spread and help control it. Some studies done on surgical patients in UK showed it prevented RSD in fact in about 1/3 or so.

Yes, C and E are both good. Getting all kinds of supplements and healthful foods and low sugar are good.

http://www.lef.org/protocols/neurolo...ropathy_01.htm

How did you decide 500 mg?

I tend to run acidic... and acidic conditions tend to make pain worse. My response to AlkaSeltzer, makes me want to be less aggressive with Vit C. I don't take the Vit C every day... mostly around 3 to 4 times a week.

Also really high Vit C is not recommended for diabetics or prediabetics as it has shown potential increasing cardiovascular risks.

http://www.diabetesincontrol.com/art...tes-news/2255-

In winter I eat oranges, and do not drink orange or other juices.
In summer is when I typically have more Ester C since oranges are out of season. I can basically tell when my gums act up that I need more C that week.

Vitamin C for Peripheral Neuropathy
 

http://www.sciencedaily.com/releases...0715135353.htm

This has implications for peripheral neuropathy if I am not mistaken.

Given the low cost and apparent low risk of Vit-C, it seems worth some more investigation and research.

Incidentally, I noticed there are evidently many people searching online for info about Vitamin C and nerves (see Google suggestions), but there isn't much in the results - yet.

P.S. I read that GABA supplements don't pass the blood-brain barrier, so maybe Vit-C, the indirect route, is viable.

I have a question. I have done a lot of reading regarding using supplements to help with PN. I know that certain vitamins/Minerals inhibit/aid in the absorption of others, so my question is how do you know what you can take together and what should be taken separately? Is there a better time of day and to take on empty/full stomach? I get so confused so I was wondering if there was a website or if someone could explain it to me? TIA :)

Welcome to NeuroTalk.

For some things there are no rules, for others, there are some, but they are few.

List what you take and I will try and help you figure it out.

help
 

I have a similar question I have NP and I began taking the methyl b12 1000 but just order the 5000 , I'm also taking benfotaimine 600gm a day and today I began taking complex b with folic acid and vitamin c(all in one by natures best) I was taking centrum womens but stopped. I have read most comments but im still unsure if I should take and how much I should take of zinc , biotin, coq10 , rlipoic , magnesium , fish oil, acetyl l carnitine and vitamin d I also read that acetyl l should be taken with ALA but I read rlipoic is better than Ala .I would really like some help since the numbness and tingling returned to my foot after a year and now I began feeling needles in my hands :(!! Thanks in advance :)

Thank you so much for your help! Currently I am taking Lovazza and Niaspan for something else along with a 325mg aspirin.

I also take Metanx which is a B complex (i think) I was going for B12 injections but the new doctor (mine retired) is an *** and won't give them to me. Even though I told him I was told by a specialist that once deficient always deficient.

Is this a good one or should I switch to over the counter? I know that you are all not doctors and therefore can not prescribe but the pain is overwhelming and I have been this way for almost 15 yrs. I have been to specialist and none have figured out the cause or done anything but push the pills,which I might add only made me very sick.

Sorry for the rant... anyway I have been doing a lot of reading about supplements that will help. I will be trying RLA and Serrapeptase and D, are there any others that might be helpful? Thanks

Most vitamins can be taken with food.

Exceptions.

1) Separate B12 oral should be on an empty stomach.

2) Lipoic acid is absorbed better on an empty stomach.

3) acetyl carnitine is best broken up into several doses and not taken all at once in one large dose.

4) Products in oils, are best taken with food.

5) calcium supplements are best taken in divided doses too.

I think you should get tested for Vit D and B12 to see where you are presently. This would then point to how much you need if you really need them. Zinc can be tested for too.
Zinc is unlikely to be low unless you take ACE inhibitors for blood pressure, or daily acid blocking drugs. Prednisone and birth control pills may lower zinc levels too. People eating meat, and seafood, do not get low in zinc as a rule.

Choice of which supplements to start on and concentrate on depend on your medical history. What is causing your PN?
Trauma/injury? at a young age? Type I diabetes? Hereditary? Supplements may not work on hereditary patients. Heavy use of therapeutic agents that damage nerves...chemo and other drugs? Lupus?

If you have a basic nutrient deficient PN from low B12, the other supplements are less important, than fixing the B12 first.
If you add too many together in the beginning you cannot see which of them are working and which are not.
Since magnesium is needed and commonly low, taking a good
product (not OXIDE type), at 1/2 the RDA is helpful. Many people in US are low in magnesium...not just diabetics and PNers.

The B-complex, C, and magnesium are useful for many people other than PNers. It all depends on what your diet is like, and your medical history, and drugs being taken, OTC and RX.

Thank you so much for your help! Currently I am taking Lovazza and Niaspan for something else along with a 325mg aspirin.

I also take Metanx which is a B complex (i think) I was going for B12 injections but the new doctor (mine retired) is an *** and won't give them to me. Even though I told him I was told by a specialist that once deficient always deficient.

Is this a good one or should I switch to over the counter? I know that you are all not doctors and therefore can not prescribe but the pain is overwhelming and I have been this way for almost 15 yrs. I have been to specialist and none have figured out the cause or done anything but push the pills,which I might add only made me very sick.

Sorry for the rant... anyway I have been doing a lot of reading about supplements that will help. I will be trying R Lipoic and Serrapeptase, are there any others that might be helpful? Thanks

The Metanx is good, but it needs to be taken on an empty stomach so the methylB12 in it can be absorbed properly.
No food for one hour.

The Lovaza is fish oil...take with food.

The R-lipoic acid (stabilized) is very water soluble, but still should be taken on an empty stomach for best results. This newest version is an improvement over others from the past.

I will have to warn you that 15yrs of vitamin deficiency may not be helped much. There may be damage that is not correctable.
If you are lucky and start to improve, it will be a long haul.

Do you know your A1C numbers, the long term diabetic predicting values? Do you know what started you problems?
An injury, illness, treatment of some kind, some vaccine reaction, etc? This information is helpful to help decide which supplements to concentrate on.

I am not Diabetic and the so called doctors are not interested in finding out the cause so it has been hit and miss for me. What I am looking for is releif from the agonizing pain :( There has been no injury to account for this or so I am told....

I have been told that my body is very inflamed and I have had a LEAP done and am apparently sensitive to many foods.

So the Lovaza should help. And the aspirin.

Get the tests if possible. If you cannot get the Vit D done, keep at 2000IU of D3 daily only.

If you suspect leaky gut, food etc intolerances, I'd try Kefir too.

This is 12 probiotics , and gluten free. I hope you can tolerate dairy? It is wonderful for reducing problems from the GI tract and inflammation there.

http://www.lifeway.net/

I have found this very helpful for myself!

So the Lovaza should help. And the aspirin.

I have been tested for D and it s an 18 the dr was giving me a supp then told me he would not longer.... I am working on the leaky gut via an alkalizing diet as I and addicted to sugar...What is Kefir? I started juicing for nutrients but with my hands it is hard

I can tolerate dairy but it seems to make the pain worse and I have read it is bad for you...

Kefir is fermented milk. It is thinner than yogurt and better. It is very healing with many probiotic organisms in it which settle the GI tract and allow for healing.

Check out the link. We get ours from Kroger's.

The OTC D3 works far better than the RX D2...so you don't need the
doctor's RX at all...it doesn't really work.

The general rule is 1000IU D3 daily for every 10 pts need to raise.

So you could take 3,000 to 4,000IU daily, to get in a more normal range.

Thank you! What about the B's how much of those? and when should I take the D?

There is B6 in the Metanx. So you really don't need high dose
B complex. A good multivit...or "stresstab" type should do.

This is one moderate doses B-complex.
http://www.jarrow.com/product.php?prodid=57
If you choose the B-Right... take your aspirin 1 hr before this combo,
since it has a small amount of niacin 25mg in it. This is a very small amount compared to the Niaspan... so it won't matter much.

Or you could just do Centrum. I don't think you need higher because of the Metanx.

You can take the D anytime. If oil type caps, with food is okay.

Thanks!!!
 

I was confused wether this answer was for me? If so I will try to get tested I began my neuropathy years ago but the tingling just started I don't take any meds either... How much lipoic acid and acetyl carnite should I takedaily?

This answer is generic...for everyone.

If you choose the R-lipoic stabilized, 100mg a day to start is
a good dose. You can raise it later if you tolerate it. Some of us
find it too stimulating in higher doses. This new form is so much more absorbed than the older forms, 100mg is a good dose for most people.

The acetyl carnitine would be 500mg a day to start, and work up to 2 grams a day divided doses, if necessary.

These are for mostly mitochondrial damage. If your PN is not of this type, they may not work. The lipoic acid will also improve glucose utilization, and provide some antioxidant effects. It is more globally acting than the carnitine. The acetyl carnitine has been used for chemo drug damage and HIV drug damage.
Both cause toxic neuropathies.

I believe that it was in this thread that someone said they were taking 600 mg of benfotiamine. I'd be grateful for guidance and opinions regarding dose size for benfotiamine. I'm taking 300 mg now.

I take 250mg of the Mega Benfotiamine by Life Extension. It was added to my ALA and other supplements a couple of months ago. The rate of nerve healing went way up. My feet are almost healed now.

My Autonomic neuropathy was only noticed in my feet as far as what I could feel but with my POTS, it is all over of course. My OI (POTS) is so much better now also. It is very exciting. I am thankful for supplements that heal.:)

I just added this study to my Benfotiamine link:

This fat soluble form of Thiamine is far better absorbed than regular Thiamine. The old dose of thiamine for PN was 300mg a day or less. This is before gabapentin hit the shelves!

Because it is so much more absorbed, and because it stays around LONGER...not excreted so quickly... I have qualms about such high doses. I searched PubMed recently and there are no papers to speak of for this nutrient on dosing. I found ONE paper for cardiac damage indicating 400mg a day in a small subset of patients. I found only 2 pgs on PubMed, and those were mostly in animals, and from other countries.

So I will remind people here, that the high 600mg or more dose a day... comes from sites that sell this. For that reason, I personally cannot endorse it at those levels or beyond.

But since this is OTC...you can do what you choose, based on what you learn about it. If you decide to do this very high dose, just be very vigilant. It may be that only weeks are needed for this way. There is no evidence that really LONG term use, is safe yet, or that effective for most people.

I, myself, take 150mg a day. This keeps me from severe burning.
I also drink moderately 2 or 3 times a week, depending.

That's remarkable. I am so happy for you that you got such a good result! :)

And thanks for sharing this info! :) :)

Thank you. When I said all over, the Autonomic Neuropathy affects the blood vessels (OI) heart etc, but the place I can feel it is my feet. I responded great to all of my supplements, but the ALA and especially the have been healing for me. :)

Is there a VIt D overdose? I am supposed to take a 1200mg of calcium a day. But since I am taking gabapentin 3x a day, I could not follow now the 3x a day dosage of calcium ( (less window of squeezing in between gabapentin without compromising absorption) . Instead I only take calcium 1x a day. To help in the absorption of the calcium I take vitd3
2000IU.

Thank you for time.