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~~SUPPLEMENTS~~~ for Peripheral Neuropathy:

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Old 05-08-2010, 05:29 AM   #1
mrsD
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Arrow ~~SUPPLEMENTS~~~ for Peripheral Neuropathy:

Supplements for peripheral neuropathy may be helpful for some people. Nerve tissue is like other tissues of the body, and requires various nutrients to support it and repair it.

There are nutrients that may be lacking in your diet. They may be depleted by another disease state (diabetes depletes magnesium), or they may be depleted by other drugs you may be taking. Many common drugs affect nutrient status of many things. I consult a reference for questions in this area, and urge people to seriously consider the drugs they are using, like blood pressure, antiseizure drugs, acid lowering drugs for GERD, some antibiotics, etc. The text I use is called the Drug Induced Nutrient Depletion Handbook 2nd ed. and is currently out of print.
There is a website with an abbreviated version of some of this data here:
http://www.chiro.org/nutrition/ABSTR...orticosteroids
Readers here can always PM me for privacy and details.

People may develop a need for supplements because of poor diet, depletion by illness or drug therapies, and genetic reasons which affect metabolism and various enzyme systems.

This thread is going to discuss the various supplements that have evidence published, that show how they can help.
Please stay on topic with this thread, and be patient too, since it is going to become a LONG read.

I am going to start with Vitamin B12, and Vitamin D. These two have had the most written about them, and are the most common supplements to consider for PN.

Vitamin B12: I have a long thread here:

http://neurotalk.psychcentral.com/thread85103.html

This thread is long and contains information about B12, how to choose it, what dose to take, links to medical data, and some discussion. B12 is depleted by some drugs, metformin for diabetics, and the drugs that control acid in the stomach result in the impairment of B12 absorption from food. There are now recommendations from NIH and professional nutrition groups that persons over 50 in US should take a B12 supplement, since aging can contribute to a deficiency of this vital nutrient.

B12 does not have an upper limit of toxicity and is very easily tolerated, and not expensive. So these 3 factors make it very easy to try. Also doctors tend to ignore it, and even when they test for it, may rely on antiquated lab ranges, and tell patients they are "normal" when they are NOT. There are medical websites to explain this, but I guess doctors don't keep up.
This is one:
http://www.aafp.org/afp/2003/0301/p979.html
If your doctor is one of "those needing education" you could print out this article from AAFP and give it to him/her. This article also explains how ORAL B12 can work as well or better than injectable. Suffice it to say, if you test below 400, you definitely need intervention. If you are at 400 or very close, that is borderline and with PN symptoms you could most likely profit by taking B12 as well to raise your level up. I'd suggest to be at least at 1000 for PN patients. Some people choose to go higher yet. Please consult my thread link to read how to choose a supplement for yourself.

Vitamin D: Vitamin D is not really a vitamin, it is being found. We typically get our Vitamin D from the sun, but with all the warnings out there about skin cancer, people are not getting the sun exposure they need for good health.

I have a thread on this too:
http://neurotalk.psychcentral.com/sh...hlight=vitamin

Within the last 5 yrs the research on this subject has exploded and now we have the medical community aware of how deficient Americans are with Vit D. Estimates are 50-70% have below normal serum levels, and some people with other illnesses are extremely low. My link has links to videos and other information about Vit D. And there are several threads about this at our Vitamin Forum with discussions.

We do not get much Vit D if at all from food. Some foods are fortified in US, but with amounts that are very small. So sun exposure is the main way we can get Vit D. It does not work thru glass windows either, because the glass filters out the UV.

Pediatricians are now giving D3 to children for example.
Low D impacts pain. There are studies now showing chronic pain patients need less medication when D3 levels are optimized. The direct link to PN is beginning, and I have one study on that thread to illustrate that. As time passes, we will see much more on this subject.

So because of this new data, I do recommend patients get tested to see where they are. The doctor's recommendations are still fairly antiquated and tend to favor D2 in high amounts once a week or once a month.(doctors also are not treating patients in the 30ng range--calling that "normal"...target range is now accepted at 50-60ng/ml) All of the experts do not recommend D2 (the Rx one) and suggest you use D3. Many of the posts over at our Vitamin forum here discuss this. The links I have in my D thread also discuss this. D3 is OTC (over the counter) and D2 is the RX one 50,000 IU and is RX because historically that is the only D we had for about 40 yrs! And that form appears in doctors' reference books so they prescribe it. In fact the use of D3 is more effective and preferred now.

edit 2-23-16-- links concerning vitamin D's role in preserving the GI mucosa:
http://neurotalk.psychcentral.com/thread232869.html
and
http://neurotalk.psychcentral.com/thread232831.html

Testing: This brings me to the subject of testing. It is rather dumbfounding that doctors may test you and then apply the wrong treatment. But one has to watch out for this problem.
With B12, using cyanocobalamin is now considered old information and better results can be had with the activated B12 form called methylcobalamin. Many doctors have no clue that this exists...and is very inexpensive. The same goes for treatment for D deficiency. All D3s are OTC including one 50,000 IU one.

There are blood tests for other vitamins, and interpretation of them is also spotty. Tests for B6, magnesium, thiamine etc really are only medically useful for very very low or very high levels. Using magnesium as an example--very low leads to cardiac arrest and muscle problems, and very high can be poisonous. But people may show "normal" ranges and have various medical problems that respond to some supplementation. Much work was done with magnesium and migraine a few years ago, with patients showing normal serum levels, yet responding favorably to extra magnesium given orally with supplements.

People who really understand testing, often use labs that do "intracellular" levels, and this is thought to be more accurate. Spectracell is one lab mentioned using this technology.
http://www.spectracell.com/

The same is true for B6. The reference ranges for that may be elevated if you are taking vitamins, but those elevations do not necessarily correspond to "toxicity" in any way. Autistic patients may show elevated B6 readings with NO supplementation! And people with a condition called pyroluria, may show very low levels in testing. B6 is a complex vitamin in that very low levels cause PN, and very high toxic levels also cause PN. So interpretation of serum tests may be problematic.
I have threads on our Vitamin forum specializing in magnesium and B6:

http://neurotalk.psychcentral.com/thread1138.html

http://neurotalk.psychcentral.com/thread30724.html

The following posts on this thread will include:
magnesium
zinc
acetyl carnitine
CoQ-10
Fish oil
B6
alpha lipoic acid
thiamine/benfotiamine
and others.
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Old 05-09-2010, 06:38 AM   #2
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Default Vitamin D

This site has some good information on Vitamin D for both patients and doctors.

Pain Treatment Topics

The Patient Brochure and Practitioner Briefing at first appear to be written for musculoskeletal pain, but both also report an improvement in neuropathic pain. The Practitioner Briefing mentions this study:

Quote:
...a recently reported trial of 2000 IU/day in patients with neuropathic pain produced a 67% increase in 25(OH)D levels and a 50% improvement in pain scores during 3 months of treatment.
The Full Report states the the pain levels (from trial) improved from 'distressing' to 'mild'.

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Old 05-09-2010, 07:10 AM   #3
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Lightbulb a good link:

This is a good link to an alternative data base used by some Universities.

http://www.umm.edu/altmed/

This is its index with categories of information:
Quote:

Condition

Depletion

Herb

Supplement

Treatment

Condition Symptom Links

Herb Side Effect Links

Herb Use Links

Herb Warning Links

Supplement Depletion Links

Supplement Side Effect Links

Supplement Use Links

Supplement Warning Links

Herb Interaction

Supplement Interaction
They do not list all supplements, but I consult this resource often because they are very complete on drug interactions with supplements and also depletion of nutrients by drugs.

They have a address that does not change, when you are in each special category, so linking there to specific screens is not possible.
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Old 05-10-2010, 08:41 AM   #4
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Post Benfotiamine and Thiamine:

Benfotiamine is a lipid soluble form of water soluble common Thiamine (B1).

Historically B1 was the only treatment for neuropathy for many years. The typical dose is 100-300mg daily in divided doses.
Then the SSRI antidepressants emerged and also Neurontin (followed by Lyrica) and the treatment for PNs changed and doctors dropped the thiamine. This I believe is a mistake.

Thiamine is easily found in most grocery stores and pharmacies. It remains inexpensive as well. Starting just over a decade ago, this new form called Benfotiamine started appearing in studies.
For quite a while it was not available in US and then when it did start becoming so, it was ferociously expensive. That has now changed.

Here is an informative website on it:
http://www.benfotiamine.org/FAQ.htm

I find it affordable at iherb.com and I use the Doctor's Best brand. The website above endorses much higher doses, than I use and typically recommend. I think for many people 300mg a day is adequate. But we have had some posters here who used 900mg-1200mg daily. At that level, cost will become an issue for many.

I recommend benfotiamine for neuropathies that are not responding to B12 and/or Vit D. Also some people have metabolic problems with the genes that metabolize alcohol. These patients also can benefit from benfotiamine.

I'll also add that beriberi (thiamine deficiency) does occur in some patients and go unrecognized by doctors. This is due to taking some medications that deplete thiamine, like the strong loop diuretics. But it can be due to low dietary intake, high alcohol consumption, or a genetic flaw that then requires higher daily intake. Malabsorption from gluten intolerance/Celiac or inflammatory changes in the GI tract like Crohn's may also cause beriberi. The genetic issue is called vitamin "dependency" and occurs with other vitamins ---B6 for example. People with a vitamin dependency require higher amounts of the vitamin compared to the majority of others.
Here is a link to a medical site on beriberi:
http://emedicine.medscape.com/article/116930-overview

Since the link I gave at the beginning of this post, is very complete, there is not much more for me to say at this point, other than benfotiamine remains a good option to add to any supplement list you may be considering.

edit to add some more links from PubMed on this subject:

http://www.ncbi.nlm.nih.gov/pubmed/20188835

This study does give doses:
http://www.ncbi.nlm.nih.gov/pubmed/18473286
And does reiterate what I post that it takes TIME to show benefits. People often push the dose UP to get faster response IMO.

This is a chemical explanation:
http://www.ncbi.nlm.nih.gov/pubmed/18384109

http://www.ncbi.nlm.nih.gov/pubmed/18220605
Before gabapentin and SSRIs drugs, thiamine was the main treatment for PN. I believe it should remain high in the list for
any PNer and befotiamine is superior IMO. However, benfotiamine at one time was super expensive and few could afford it. That has changed in the last 3 yrs or so.
Thiamine remains inexpensive, but it makes some people have a body odor that limits its use.

This PDF gives some good data:
http://www.altmedrev.com/publications/11/3/238.pdf

This is an older paper:
http://www.ncbi.nlm.nih.gov/pubmed/16359659

This is from 1999:
http://www.ncbi.nlm.nih.gov/pubmed/10219465

I used to use thiamine in bursts. A month or two at a time, in the past. When Benfotiamine became affordable, I changed to it.
I only use 150mg a day now, but I started at 300mg in the beginning. I don't feel it is a cure...but it sure does prevent progression, and take care of alot of the discomfort for me.
I do think some people have a higher genetic requirement for it.

This one from 1996: Germany where the beginning studies originate.
http://www.ncbi.nlm.nih.gov/pubmed/8886748

Edit:
Here is a new link... discussing the better absorption and bioavailability of Benfotiamine vs thiamine:

Quote:
Int J Clin Pharmacol Ther. 1996 Feb;34(2):47-50.
Pharmacokinetics of thiamine derivatives especially of benfotiamine.
Loew D.
Source

Wuppertal, Germany.
Abstract

Pharmacokinetic data of orally administered lipid-soluble thiamine analogues like benfotiamine are reviewed and assessed. It is quite clear that benfotiamine is absorbed much more better than water-soluble thiamine salts: maximum plasma levels of thiamine are about 5 times higher after benfotiamine, the bioavailability is at maximum about 3.6 times as high as that of thiamine hydrochloride and better than other lipophilic thiamine derivates. The physiological activity (alphaETK) increased only after benfotiamine was given. Due to its excellent pharmacokinetic profile benfotiamine should be preferred in treatment of relevant indications.

PMID:
8929745
[PubMed - indexed for MEDLINE]

Publication Types, MeSH Terms, Substances
http://www.ncbi.nlm.nih.gov/pubmed/8929745
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Old 05-11-2010, 10:58 AM   #5
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Lightbulb Acetyl l-carnitine:

This supplement has been used for over a decade, for neuropathy that occurs in HIV patients taking anti-retrovirus drugs.

So that has spurred research in general. Here is a link with several papers about it:

http://www.integratedhealth.com/infoabstract/alcab.html

Also there are papers showing usefulness of ALCAR for patients undergoing chemotherapy treatments. For Chemo patients it is best to start the ALCAR before the treatments start.
edit to add 8-15: I am adding this information after seeing some critics of ALCAR not working for chemo neuropathy.
This new article from 2014 for example:
http://www.ascopost.com/issues/may-1...t-cancers.aspx

But then this 2014 article shows improvements in some chemo patients using carnitine:
http://www.sciencedirect.com/science...13231714000214
This link also has many interesting graphics to help explain the complex topic.

So each patient will have to do some research on whether carnitine is for worth trying for themselves.

end of edit.


This link to our PN board has a paper from 2007 on the usefulness of carnitine during chemo:

http://neurotalk.psychcentral.com/post507671-2.html

Our bodies make carnitine from the essential amino acid l-lysine.
But this conversion may fail or be affected by certain other drugs you may be taking. Most of the drugs for HIV affect carnitine levels. Also the anti-seizure drug, Depakote depletes this. There have actually been deaths from low carnitine levels induced by Depakote.

Most advice involves acetyl-l-carnitine, because the acetyl group may be used by the brain to make acetylcholine, a valuable neurotransmitter. Also Acetyl carnitine is slightly better absorbed than regular l-carnitine.

Carnitine supplements are not inexpensive. So if you suspect your PN is induced by drug toxicity, which may be affecting the mitochondria of the nerve cells (which make energy), then you can try it. There are limits to carnitine absorption in the intestines, so if you decide to use high doses (over 500mg/day) it is best to break them up and take them at different times.
Recently we have had some posters visit here saying their neuro has suggested this supplement. So information is finally getting to them.

Articles like this one 2010:
http://www.ncbi.nlm.nih.gov/pubmed/20302919

and
http://www.ncbi.nlm.nih.gov/pubmed/19768376

This study shows decreased pain in diabetic patients and even some regeneration of nerves in one study:
http://www.ncbi.nlm.nih.gov/pubmed/18940920

There are very few side effects reported with this supplement. In really high doses of 10 grams or more a day some GI upset may occur, since not all is absorbed and remains there. With the doses used for neuropathy, they are not this high, and the 3rd link above used 3 grams a day.

Acetyl carnitine is now being included in supplement mixtures targeting Anti-aging effects and improvement in Alzheimer's. Included in these mixtures are CoQ-10 and biotin, and sometimes alpha lipoic acid. I would use the carnitine separately to start, because high doses may be needed, and combo products do not allow for that --and become very expensive.

Regular l-carnitine is also on RX. If you can convince a doctor to give it to you this way, it may be covered on your insurance. (it is not acetyl form).
This RX form is also available OTC from the same manufacturer, from this source:
http://www.epic4health.com/lcar60cap.html
Some people feel more comfortable with this type, so I include the link to it.

Any questions are welcome here. You can also search the main forum below using the keyword "carnitine" and find many discussions.
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Old 05-25-2010, 02:11 PM   #6
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Default Things I found that helped my peripheral neuropathy

Hi, I am new to this forum. I was diagnosed with peripheral neuropathy following an EMG the end of March 2010. All my blood work was normal except for a B12 of 190. (I had to insist that my neurologist even run a B12 test on me--he said he didn't think I could have a low B12 since I maintain a good diet.) My neurologist told me that 190 was not low, and I would not benefit from treatment with B12 injections. My husband and I insisted that a value of 190 was low and the neurologist begrudingly gave us a prescription for B12 injections. My husband fortunately was able to give me the injections at home. I started B12 injections as well as oral supplements on April 7. I also started acupuncture the same week. The burning in my legs was horrific. I screamed all night and cried all day. I had pain in my thighs as well. I could not sleep and was prescribed Ambien. I was able to sleep with the Ambien but also got very depressed while on the Ambien and quit eating, thus losing over 10 lbs in short order. I was then prescribed Paxil. I was spiraling down very fast and not wanting to live if I had to have this pain all my life and take all kinds of drugs to control the pain. However, by week five on the injections, supplements, and acupuncture my body finally began to rally. The burning and pain in my legs stopped and now the numbness in my feet and hands is almost completely gone. I was fortunate to have a wonderful support group of family and friends who prayed for me daily and I know that God has answered all our prayers.

I tell everyone I meet now to have their B12 checked. I am 58 years old and in good health. I have been treated for hypothyroidism for over 30 years and I now know there is a link between thyroid disease and malabsorption of B12. I also used Pepcid fairly regularly and had a high intake of caffeine every day, all of which prevent the absorption of B12. I have taken alcohol, sugar, and caffeine out of my diet.

Please do not let your doctor tell you that B12 is not a factor. Have your B12checked. I had to plead with my neurologist to even check mine and then plead with him to treat me with B12 injections. If you are below 500 demand to be treated. Now two months after being diagnosed with peripheral neuropathy I feel that I am about 90% recovered. Don't let them tell you your PN is idiopathic. Keep reading and doing research, be a strong advocate for your own health. If I had not done all this detective work myself regarding B12 I would be bed bound by now, on Lyrica, Paxil, and Ambien every day because my doctor said I was pretty much doomed and encouraged me to take all these medications.

The supplement I have been using is Nerve Support Formula which I purchased on Amazon because shipping is free. This treats neuropathy, no matter what is causing it. You have to take it consistently at fairly high doses for at least two months to get benefit. Their consultants are available all day to talk to you and help you individually. I think the combination of B12 oral supplements, injections, and acupuncture has pretty much healed me and I want to share my story with everyone. I am happy to communicate with anyone on this topic. There is help out there.
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Old 05-25-2010, 02:57 PM   #7
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Thumbs up

I am so glad you are getting better. Stories like yours continue to amaze me that doctors can be so ignorant of this simple yet vital nutrient!

That supplement you are using should be taken on an empty stomach, if you are not already doing so. The micrograms of B12 can be lost in food/fiber so empty stomach allows for the best absorption. You could also just use methylcobalamin orally and save quite a bit of $$, but that is your choice. I don't agree that your supplement would treat all forms of neuropathy however. That sounds like a sales pitch to me.
B12 and benfotiamine work for those low in those nutrients. Some neuropathies are autoimmune and have other factors that cause them besides low B12.
Some PNs are from direct toxic effects of drugs or poisons and may occur in people with normal B12 levels.

But in any event it is working for YOU...so keep up the good work, and I wish you the best and continued improvements.
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Old 05-28-2010, 10:37 AM   #8
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My husband fortunately was able to give me the injections at home. I started B12 injections as well as oral supplements on April 7. I also started acupuncture the same week. The burning in my legs was horrific. I screamed all night and cried all day. I had pain in my thighs as well. I could not sleep and was prescribed Ambien. I was able to sleep with the Ambien but also got very depressed while on the Ambien and quit eating, thus losing over 10 lbs in short order. I was then prescribed Paxil. I was spiraling down very fast and not wanting to live if I had to have this pain all my life and take all kinds of drugs to control the pain. However, by week five on the injections, supplements, and acupuncture my body finally began to rally. The burning and pain in my legs stopped and now the numbness in my feet and hands is almost completely gone. I was fortunate to have a wonderful support group of family and friends who prayed for me daily and I know that God has answered all our prayers.

[/QUOTE]

I have chemo induced PN and take 5K mcg of B12 daily. I had started out having B12 injections on a weeky basis but switched to the oral form. I would like to know how often you do the injections and what the dosage is as I considering resuming injections.

I would also like to know which supplements you use besides B12. TIA
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Old 06-28-2010, 10:53 AM   #9
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Mrs. D

What form of curcumin do you recommend. I recall on another post you saying there was a certain form you would recommend, but don't recall you posting the details. Thanks in advance
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Old 06-28-2010, 11:38 AM   #10
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Lightbulb

There are several enhanced forms of curcumin out there now.

Curcugel is affordable and I have used it.
There are also forms with Bioperine added, but if you take RX drugs I'd prefer you avoid Bioperine products until more research clears it as safe. Bioperine enhances absorption of many things, and drugs were not developed in dosing relating to it.

This is a long thread, but it has alot of information on it that is useful to help you select a product you can afford, and that will work:

http://neurotalk.psychcentral.com/sh...light=curcumin

The Parkinson's forum also has many curcumin threads, as they use it too. Some of theirs is more research oriented, but if you search there you will find plenty to read also.

Regular curcumin that is not enhanced, will remain in the GI tract and act as an antioxidant there. Good for Crohn's, and other inflammatory problems localized to the GI tract.
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