~~SUPPLEMENTS~~~ for Peripheral Neuropathy: [Archive]

mrsD

05-08-2010, 05:29 AM

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/ABSTRACTS/Nutrient_Depletion.shtml#Corticosteroids
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/showthread.php?t=115722&highlight=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.

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.

plgerrard

05-09-2010, 06:38 AM

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

Pain Treatment Topics (http://pain-topics.org/clinical_concepts/vitamind.php)

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:

...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'.

.

mrsD

05-09-2010, 07:10 AM

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:

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.

mrsD

05-10-2010, 08:41 AM

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:

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

mrsD

05-11-2010, 10:58 AM

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.

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.

txgal51

05-25-2010, 02:11 PM

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.

mrsD

05-25-2010, 02:57 PM

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.

antonina

05-28-2010, 10:37 AM

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

fabdou

06-28-2010, 10:53 AM

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

mrsD

06-28-2010, 11:38 AM

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/showthread.php?t=107045&highlight=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.

sojourner777

07-05-2010, 01:34 PM

Mrs D,
Do you know anything about the potential effects of resveratrol on PN?

mrsD

07-05-2010, 02:31 PM

I can only assume it would be helpful. That is if you get good quality resveratrol.

I think antioxidants are useful for PN...they quench free radicals etc. I take 300mg grapeseed extract daily, and krill oil has one in it too...to make it the red color.

And there are the studies showing simple Vit C in high amounts of 500 to 1000mg can prevent onset of RSD from surgery on the foot or hand. That is something to think about. RSD being a neuropathy of the sympathetic nerves. Why is not understood, but inflammation must be at the heart of that action.

So if you can afford resveratrol, I say give it a try.

sojourner777

07-05-2010, 09:38 PM

Thank you MrsD.
I notice you have recommended Puritan's Pride as a source of supplements in many of your responses - does it have better prices than other providers?

mrsD

07-06-2010, 06:01 AM

Puritan's has better prices on some things, but not others.

For example with the sale going on now, for d-ribose (which is expensive), buy one get 2 free... I saved about $30. (over iherb)

They do raise their prices for "sales", but even then they can be a "deal". I used to get my grapeseed extract from them, but then Costco started carrying a nice softgel type, so I bought that last time.

After you buy from them once, if you give your email, they will send occasional emails, for free shipping + perhaps a $$ discount coupon. The buy one get 2 free is the major sale I use.
I don't think the savings on their other sales is as great. They only do this one once a year in summer typically. (If you save your catalogs from them, you will see they alter prices according to sales-- this bothers me somewhat, but I think you still save alot in the end.)

In the past Puritan's did not have the "newest" supplements, but I see that is changing. They now have methylcobalamin and the d-ribose which I had purchased at iherb previously.

I think their quality is fine. I've used them for years. But just not for everything.

sojourner777

07-06-2010, 08:24 AM

Thank you Mrs. D
I have been taking Shaklee vitalizer complex but I'm putting together a list of individual supplements to take after reading this site. I have a few questions about either dosage and/or provider on a few of them. would you mind giving your input?
supplement

sojourner777

07-06-2010, 09:08 AM

Sorry - I hit the wrong key

Supplement dosage provider

benfotiamine 300 mg/day - 2 doses iherb - Doctor's Best
methylcobalamin 5 mg/day iherb - Jarrows methyl B12 5000
P5P 50 mg/day iherb - Now Foods Coenzyme B6
folate 1600 mcg/day - 2 doses iherb - MetaFolin by Solgar
magnesium 1/2 of RDA WalMart - SlowMag 2/day
iherb - Ionic Fizz mag Plus
acetyl-L-carnitine 500 mg;/day - 2 doses iherb
grapeseed extract 300 mg/day costco
r-lipoic acid 600 mg iherb

These have questions
D3 5000 IU/day ?
curcumin ? epic5health - Curcugel 500
CoQ10 ? ?
zinc ? ?
calcium ? ?
glucosamine ? ?
omega-3 fish oil 1200 mg - 2 doses ?
d-ribose ? Puritan's Pride

I have not had any labs done on these levels - I am scheduled to meet Friday with the nurse practitioner of one of the two local neurologists who I have been told works with Neuropathy - can't get an appt with the dr until Oct.
I am in Mississippi. Do you have knowledge of doctos/centers in the Southeast - someone to recommend? I have read of Dr. Norman Latov in NY on this website. I want to take the best steps I can in dealing with this - these neuropathic symptoms of burning and pins and needles started within the last two months and it has taken a toll on my life. I am so grateful for this website - you have all given me hope and inspiration - thank you.

mrsD

07-06-2010, 09:44 AM

I am going to put my comments in red within your quote:
If I don't comment, that means okay.

Sorry - I hit the wrong key

Supplement dosage provider

benfotiamine 300 mg/day - 2 doses iherb - Doctor's Best
methylcobalamin 5 mg/day iherb - Jarrows methyl B12 5000
P5P 50 mg/day iherb - Now Foods Coenzyme B6
folate 1600 mcg/day - 2 doses iherb - MetaFolin by Solgar
magnesium 1/2 of RDA WalMart - SlowMag 2/day
iherb - Ionic Fizz mag Plus
you don't need ionic fizz if you use the SlowMag and vice versa
acetyl-L-carnitine 500 mg;/day - 2 doses iherb
grapeseed extract 300 mg/day costco
r-lipoic acid 600 mg iherb
r-lipoic is very strong, I'd start at 50mg a day and if you feel okay with that --it can be stimulating-- then increase to 100mg a day. r-lipoic is more potent than alpha type, which the 600mg would be more appropriate. I wouldn't go over 100mg a day of r-lipoic at this time.
These have questions
D3 5000 IU/day ?
If you get no sun at all in Mississippi, then 5000 IU is probably okay, but if you do get sun, I'd get tested to see exactly what dose you need. Most of the new recommendations on Vit D3 are you can start at 2000 IU safely without testing.
curcumin ? epic5health - Curcugel 500
one or two a day. You can start at one, to save some $$
CoQ10 ? ?
This can be expensive, so start at 100mg a day of enhance absorbing type..called Q-sorb at Puritan's

zinc ? ?
if you don't eat meat or seafood, then yes. But you won't need this if you are eating well and are not a vegetarian. OptiZinc is the best at one a day if you decide to use it
calcium ? ?
I just saw a new recommendation by a cardiologist who says taking high doses of calcium is not necessary and may not be safe when using high dose D3. So if you eat dairy and veggies, you may not need any calcium extra...if you take some don't go over 600mg at this time.
glucosamine ? ?
I don't see much benefit with this, save your $$ at this time. Studies do not show much value today.
omega-3 fish oil 1200 mg - 2 doses ?
d-ribose ? Puritan's PrideI'd save this for later...I am still trialing it for various effects. So far I find it helping with stamina and sleeping. But since it is expensive, save it for later, as you may not need it.

I have not had any labs done on these levels - I am scheduled to meet Friday with the nurse practitioner of one of the two local neurologists who I have been told works with Neuropathy - can't get an appt with the dr until Oct.
I am in Mississippi. Do you have knowledge of doctos/centers in the Southeast - someone to recommend? I have read of Dr. Norman Latov in NY on this website. I want to take the best steps I can in dealing with this - these neuropathic symptoms of burning and pins and needles started within the last two months and it has taken a toll on my life. I am so grateful for this website - you have all given me hope and inspiration - thank you.

I don't know of any doctors to consult ..others here may have ideas about that.

If you are postmenopausal, I'd use a vitamin product without iron. I don't know what is in your product, but there are many "senior" type products now, with minerals without iron. If you take a multi-- you probably won't need extra zinc.

sojourner777

07-06-2010, 10:20 AM

Thank you! I just watched the vit D video you mentioned in another thread - it was very informative.
Thank you again!

caldeb1

07-12-2010, 03:47 AM

I am a new user with perpherial neuropathy but I cannot figure out how to post a question to the site.
Debbie

Koala77

07-12-2010, 04:19 AM

You're doing just fine caldeb1, but you're in the 'tips' section at the moment!

Under here I've provided a link. If you click that link it'll take you to the main PN forum, and you can either reply to a thread already commenced, or start one of your own.

http://neurotalk.psychcentral.com/forum20.html

Towards the top, on the left you'll see new thread or post reply, depending on what page you brought up.
Click on that one and you're away!

Good luck, and let us know if you need any more assistance.

Nervous

07-15-2010, 12:11 PM

Granted, I skimmed through this thread rather quickly, but I didn't see anything regarding dosages for magnesium.

mrsD, can you provide a dosage range for magnesium? I've been taking as low as 600 mg and as high as 2200 mg per day, and I am still trying to find in the lowest dosage that will help with foot cramps.

Also, with spinach and broccoli as major components of my diet, I have limited myself to the 600 mg of calcium in my multiple vitamin. I don't eat dairy of any kind. Think I'm okay with 600 mg calcium?

Lastly, I'm unsure of the proper dosage for potassium. My multi vitamin has 99 mg. That seemed low, so yesterday I added in 300 mg on top of that. Almost immediately after taking the extra 300 mg. of potassium, I began to feel increased tingling in both big toes. Hmm.

Thanks.

mrsD

07-15-2010, 12:24 PM

Getting any benefit from potassium OTC supplements is like spitting in the ocean. We are supposed to get 4.5 grams a day from our food intake. Some foods are higher than others.
Cantaloupe has 1400mg or so in 1/2 melon.
A V8 has about 600mg.

An RX potassium supplement varies from 600mg to 800mg.
So 99mg tablet is nothing OTC. FDA limits higher numbers for OTC tablets. You'd have to take 6-8 tablets OTC to equal one V8 ( the low sodium one has more potassium than the regular).

www.nutritiondata.com gives mineral values for just about every food there is. When consulting this source watch the serving size...since some are unrealistic or misleading. Check what you typically eat and see how much of magnesium and potassium you typically consume.

But for magnesium 3 oz of unsalted almonds can give 270mg.

I don't think really high magnesium is needed. We are designed to eat a certain amount daily, and flooding your body with this is not natural. High magnesium intakes in people with impaired renal functions can lead to a build up in the body.

I have seen profound changes in people just taking 2 SlowMags a day! The RDA is about 400mg for an adult, elemental daily.

You can soak in magnesium...by making baths of epsom salts.
This lets some magnesium into the body where circulation may be impaired and so if mag has trouble getting to the toes and fingers.
Use lukewarm water, and about 4-6oz in a bathtub. When tiny blood vessels get clamped down, what you consume orally may not reach feet and hands. Once those vessels open up, nutrients can flow much better. (and toxins can be removed more efficiently). Magnesium baths are very relaxing to the muscles and can reduce pain too.

Remember when reading labels of magnesium products...some do not list contents in ELEMENTAL values. Some do. So a high dose of magnesium malate 1000mg, is really 150mg of magnesium elemental!

So if your cramping is confined to the feet do some soaks with epsom salts to get you relaxed and the blood flowing properly, then the oral can work better.

Granted, I skimmed through this thread rather quickly, but I didn't see anything regarding dosages for magnesium.

mrsD, can you provide a dosage range for magnesium? I've been taking as low as 600 mg and as high as 2200 mg per day, and I am still trying to find in the lowest dosage that will help with foot cramps.

Also, with spinach and broccoli as major components of my diet, I have limited myself to the 600 mg of calcium in my multiple vitamin. I don't eat dairy of any kind. Think I'm okay with 600 mg calcium?

Lastly, I'm unsure of the proper dosage for potassium. My multi vitamin has 99 mg. That seemed low, so yesterday I added in 300 mg on top of that. Almost immediately after taking the extra 300 mg. of potassium, I began to feel increased tingling in both big toes. Hmm.

Thanks.

Nervous

08-07-2010, 10:42 AM

I've been on the below regimen of supplements for about a month and I am starting to notice some problems with constipation and/or slow moving bowels.

What might be the cause? Am I over-doing a particular substance?

Thanks.

Vitamin A 5000 IU
Vitamin B1 (Thiamine) 171 mg
Vitamin B1 (Benfotiamine) 150 mg
Vitamin B2 (Riboflavin) 60 mg
Vitamin B3 (Niacin) 100 mg
Vitamin B3 (Niacinamide) 60 mg
Vitamin B6 (Pyridoxine) 66 mg
Vitamin B7 (Biotin) 2598 mcg
Folate 1000 mcg
Vitamin B12 (Cyanocobalamin) 200 mcg
Vitamin B12 (Methylcobalamin) 3 mg
Vitamin C 1550 mg
Vitamin D3 4200 IU
Vitamin E 400 mg
Vitamin K 80 mcg
Magnesium 600 mg
Zinc 40 mg
Selenium 250 mcg
Maganese 13 mg
Sodium 130 mg
CoQ10 300mg
Copper 2 mg
Alpha Lipoic Acid 6000 mg
Chromium 250 mcg
Molybdenum 150 mcg
Calcium 748 mg
Potassium 100-400 mg
Glucosamine Condroitin 6 g.
L-Lysine 1000 mg
Acetyl L-Carnitine 1000 mg

mrsD

08-07-2010, 10:50 AM

I don't see anything on that list that is problematic for constipation. The magnesium and Vit C should be possibly loosening in fact.

But everyone is different. May be a drug you are taking?
Or some food? I notice that cottage cheese slows me down for some reason...but other dairy does not. I think that is weird but I have no explanation for it for myself.

Are you drinking enough water during the day? All those supplements do need good kidney functions, and low water intake would be stressful, and it can cause slowing of bowel transit.

I happen to be at the laundromat here on the free wifi...so you just caught me online! Still on vacation.;)

Nervous

08-07-2010, 07:08 PM

SandynRandy

08-08-2010, 12:05 PM

Thanks, mrsD! Hope you're having a nice vacation!

I eat mostly meat and vegetables. Currently, I'm adding some summer fruits, like berries. Also, I average approx. 2 bananas per day. I drink a lot of water, as well. I do not take any medication.

The only monkey wrench in the diet works maybe be the protein powder that I take approx. 4 days per week. Hmm.

At the risk of sounding a bit crass, what seems to be helping my husband most these days is eating two ears of corn a night! Since his PN has made it impossible to go, or know when he's going, we've had to balance a regime of suppositories, enemas, colase, senna, ducolax, miralax and even Lactulose. I also give him acidophilius when he's on antibiotics, all under MD Supervision and with damaged kidneys. He gets 1000 mcg of B-12 (cyan. type) per day too,

SandynRandy

08-08-2010, 12:11 PM

Nervous

08-09-2010, 09:55 PM

At the risk of sounding a bit crass, what seems to be helping my husband most these days is eating two ears of corn a night! Since his PN has made it impossible to go, or know when he's going, we've had to balance a regime of suppositories, enemas, colase, senna, ducolax, miralax and even Lactulose. I also give him acidophilius when he's on antibiotics, all under MD Supervision and with damaged kidneys. He gets 1000 mcg of B-12 (cyan. type) per day too,

It's not crass and thank you for responding. I hope your husband is doing better!

I gather you are going for the corn because it's in season right now. Perhaps introducing a new grain into the diet is helping to get things moving in the digestive tract. The body responds well to variation, rather than the same thing over and over again.

Good luck and thanks again!

SandynRandy

08-29-2010, 04:29 PM

It's not crass and thank you for responding. I hope your husband is doing better!

I gather you are going for the corn because it's in season right now. Perhaps introducing a new grain into the diet is helping to get things moving in the digestive tract. The body responds well to variation, rather than the same thing over and over again.

Good luck and thanks again!

I am starting to wonder what to feed Randy when corn is out of season! It's already not having the same effect it was earlier!

mrsD

08-30-2010, 05:49 PM

One quick remedy for constipation is virgin olive oil.

1 or 2 tablespoonfuls will often work for many people.

Trishgels

10-17-2010, 08:45 AM

I've recently been diagnosed with sensory motor peripheral neuropathy and took B12 shots every day for 2 wks, then was told to have them once a month. My level to begin with was around 180. What should my level be now? I feel confident that my doctor instructed me appropriately, as he is actually the doctor who first wrote a paper and 'discovered' the link between B12 deficiency and PN, but I'm now wanting to question what my level is now, and what your "number" is for what may be optimal, considering your success with the treatment. I have been in a wheelchair now for 9 mos., am on Lyrica, Neurontin, Valprioc Acid, Pristiq, and Vicodin - all of which provide some relief, but only if I keep my feet propped up most of the time and rest with my hands elevated (my pain is in my feet and hands with all the classic symptoms). I've had 2 NCSs and 2 EMGs, all of which showed damage. I'm 39, non-diabetic, have had a normal MRI and lumbar puncture, tried a gluten-free diet, aspirin therapy, and next week I have an Evoke Potential test, and a nerve stimulator has been suggested, along with a neuromuscular specialist. Only thing not addressed so far, which I have repeatedly complained of, is an 'aching' of the bones in hands and feet - literally feels like they are broken at times, particularly if I'm late on taking my meds. Could B12 be more of a solution than what has been tried thus far? Also, do you have any suggestions regarding any other supplements?

Any help would be greatly appreciated - from you and anyone else!

Thanks,
Trish

mrsD

10-17-2010, 09:11 AM

With a very low level of B12 for a long time period... it may take a while to recover. If there has been permanent damage to the spinal cord from the low levels, there may not be 100% resolution.

This post link has a copy of the paper by Dr. Snow, which is from 1999. His take which I bolded there is that patients with neurological problems may have to be kept at higher than typical range for treatment, than most others:

http://neurotalk.psychcentral.com/post698522-70.html

The cut off in US now appears to be 400. But following Dr. Snow's advice, would mean you should strive for higher. I'd say at least 1000. You can reach that goal by taking oral properly.
5mg of methylcobalamin (which is the active form) daily on an empty stomach has worked for many on this forum.

Many doctors don't know about active form, being available and so hence they still use the synthetic which some people cannot activate in the body. That link above I gave, is from the B12 thread, which has medical links and explanations about the various treatments and reasons for them.

So please read it carefully, the whole thread, and perhaps then your path may be clearer.

Kitt

10-17-2010, 11:44 AM

JoanB

10-18-2010, 09:25 AM

I have tried to keep up with taking all of the supplements mentioned here for about six months without seeing any improvement in my PN symptoms. I keep wondering if there are key parts I'm missing. I've seen people list the supplements they are personally taking to have someone else review them, but not a definitive checklist to follow.

Does there exist somewhere here a comprehensive list of all the supplements recommended for PN with daily doses and preferred manufacturers? Liza Jane has a blank one for you to document what you've been taking, but not one for what you should take.

Thanks!

mrsD

10-18-2010, 10:04 AM

It is hard to say what everyone should take... everyone is different.

If your PN is resistant to improvement with supplements, I'd suspect a compression problem in the spine, or a hereditary PN.

The basic ones are B12 and Vit D. Once you get normal serum test results using these and still have PN...

Then
acetyl carnitine (starting at one gram a day in divided doses)
alpha lipoic acid 600mg a day or r-lipoic 100mg a day
benfotiamine 300mg a day

The first 2 target mitochondrial damage and the benfotiamine targets aldehyde metabolism (vit B1).

These are the back bone of the supplements.
A B-50mg a day, magnesium, zinc, are also important.
As as Fish oil (anti-inflammatory).

If you see relief using NSAIDs... then I'd go with anti-inflammatory things like the Fish oil, 3 a day, and grapeseed extract and or other antioxidants.

It might be worth going gluten free for several months, as this helps many also. Diet can be a big factor in PNs that don't resolve.

JoanB

10-18-2010, 11:44 AM

Thank you for your thoughts, mrsD

Let's just look at one of them for now--spine--I finally got my latest neuro to order an MRI:

Sagittal and axial views of the lumbar spine were obtained. Multilevel lumbar degenerative changes are seen in particular at L4-5 and L5-S1. There are small fissures seen at both locations. No bone destruction or vertebral collapse is seen. No subluxation is noted. No canal mass is seen.

The axial images demonstrate some diffuse disc bulging at L5-S1 with slight facet degenerative changes. At L4-5 there is diffuse disc bulge with a small slight central protrusion associated with a small high intensity zone. At L3-4 the disc appears normal. L2-3 demonstrates a small disc protrusion on the right. L1-2 demonstrates mild diffuse disc bulge.

Impression:

Some degenerative disc changes are seen in particular L4-5 and L5-S1 with a small high intesity zone is at L4-5 and a small high intensity zone seen at L5-S1.

My neuro has not commented on this, so I figured that the above just means that I'm 54 with high milage and what else can you expect? I thought that if it were something serious, he would have contacted me. Do you or anyone else who is reading this know how to interpret this?

p.s. this MRI was with no contrast because the tech who did it couldn't hit my vein--they didn't tell me there was going to be an injection so I didn't drink much liquid that day, thinking it would be better to not have to urinate while in the MRI machine.

mrsD

10-18-2010, 01:58 PM

I think you'd need an orthopedic or back doctor to interpret that test.

There is a Dr. Sarno, in NY who feels that some people channel anger/stress into their backs. He has a program to fix this without surgery. He has written several books, including Mind- Body Connection. I've seen the TV programs he was on!
http://en.wikipedia.org/wiki/John_E._Sarno

I have his book, and in it is an evaluation of testing accuracy. He says some people with horrible back Xrays/MRIs have no symptoms or few symptoms, and some people with more or less small changes can have large problems.

I tend to agree that most people can show spinal problems as they age.

I think another medical evaluation of your test may help.

(if you don't have PN anywhere except your feet, that MAY mean your back is the culprit. Most metabolic PNs are all over, hands etc. That is not to say it couldn't be metabolic and only in your feet, like maybe it has not progressed yet, but it is sort of a hint.)

JoanB

10-19-2010, 08:52 AM

Thanks mrsD. I just thought that maybe you or someone else here had experience with MRI reports and might spot something in this one that could cause PN. I do have neuropathic pain in both feet and also legs, depending on good vs bad day.

Rick Stull

10-19-2010, 02:43 PM

Hi Trish, I can feel your pain as I almost have the same thing going on in my body. I only take Lyrica and Tramadol right now. If I learn anything I will be glad to share. I am curious if I need to beef up the B12 and do the shots verses just a vitiman suppl. We can only hope that something will work. You hang in there and I do the same.

Rick

mrsD

10-26-2010, 09:58 AM

I am going to put information here on d-ribose.

I've been using this since I made the thread here:

http://neurotalk.psychcentral.com/showthread.php?t=123731&highlight=ribose

I am not really sure what if anything it does for PN yet, but it does seem to lower pain levels for me, give more stamina and
clears my mind of the occasional brain fog I tend to get, and also
really helps me with improving sleep.

I use it at night.

It does run about $30.00 for a 45 days supply if you stay under 10 grams a day. At 10 grams a day one 8 oz tub lasts about 24 days. I found it at Puritan's for a good savings, when they have their sales.

I'd suggest starting slowly, at 2.5 grams (1/2 scoop) daily until you see how you react to it. At that dose I was taking NAPS for about a week or so. Then that effect becomes less, and you sort of normalize your metabolism of it and more must get sucked up into the cells for energy production. When adenosine is outside the cells, it is the signaling molecule for initiating sleep.

The powder is very moisture loving...and will attract any moisture in your house. So I keep my open tub tightly closed and in a Ziploc freezer baggie in between doses. I kept it sealed at our summer place which is always 80+% humidity at the lakeshore.

All in all if you have severe fatigue, have a possible fibro diagnosis or muscle weakness...this supplement is worth a try.
It is very slow in onset so you really have to give it a month or two at least. It is the slowest supplement I have tried in fact.

kwinkler

01-08-2011, 06:47 PM

I have experienced symptoms of peripheral neuropathy for the past two and a half years. A biopsy recently showed that it is a non-length dependent peripheral neuropathy. I have not had any other positive tests, except a mildly high B6 level (low to mid 40s), which was well after a year of symptoms and probably related to a B-complex vitamin I was taking back then. It was slowly coming down on the last set of blood work. I am currently taking:

B12 (methylcobalamine): 5000 mcg
folate (methylfolate): 1000 mcg
D3: 2000 IU
CoQ10: 100 mg
curcumin: 500 mg
biotin: 1 mg
acetyl-l-carnitine: 750 mg
Mg (chelate): 66% RDA
B1 (benfotiamine): 300 mg
vit C (Ester C): 500 mg
r-lipoic acid: 100 mg
omega 3: EPA 650 mg and DHA 500 mg

astaxanthin: 4 mg
vit E: 400 IU
B2 (riboflavin): ?
B3 (niacin): ?

I have dosing questions on the last 4. I am not currently taking the B2 and B3, but am curious. The first group I gathered dosing information from here. Thanks. My main question is a dosing schedule. Other than B12 on an empty stomach and to stay NPO for about an hour after, I have been unable to find any additional information. Are some better to take in the AM or PM? Are there ones that I should take together? Are there ones that I need to separate? Is there anything I am not taking that you would recommend?

Sorry about the long post and I look forward to any input.

Thanks

Nervous

01-08-2011, 07:14 PM

What is "NPO"?

kwinkler

01-08-2011, 08:45 PM

latin (nil per os): nothing by mouth

It's a commonly used medical abbreviation.

mrsD

01-09-2011, 04:31 AM

B2 is riboflavin and essential to converting B6 to its active form called pyridoxal, in the body.

You could just take a multivit with B's in it, and that may be enough.

Centrum senior or a generic of it is good, because it has trace minerals and NO iron. There will be B3 in it. (Niacin is also made in the body from tryptophan).

You will want to take nicotinamine (most common form in vitamin mixtures), because niacin itself causes flushing and similar burning the resembles some PN symptoms.

Your list is very complete, and you should see improvements within 3 months or sooner.

If you do not...consider dietary changes to find any triggers there for your symptoms. Gluten, nightshade veggies, dairy, corn, etc. Gluten is the most common one.

kwinkler

01-09-2011, 05:33 AM

Thanks. I'm try to avoid a B complex, due to the slightly high B6 levels. Is the RDA for B2 and B3 enough? Are there any others that I should take on an empty stomach? Are there certain ones to avoid taking together?

Thanks again.

mrsD

01-09-2011, 07:19 AM

The basic truth about "high" B6 is that--

the levels that appear on lab reports were not originally done on people taking supplements. Lab ranges are only a statistical sample of what to expect. They are not cast in stone, and do not reflect many things. For example, there are lab studies showing Autistic patients with higher than ave B6 readings when NO vitamins are taken. (however maybe fortified foods contributed, but no one knows).

So modest elevations in serum B6 do not reflect much unless really really high or very very low... Like magnesium and other nutrients serum labs can be misinterpreted or given weight when they shouldn't.

It takes really high B6 to cause any neurological symptoms.

And yes, a multivit may be enough for you and most people.

kate525

01-19-2011, 01:42 PM

Hello- I am new to the group and have been trying desperately to find the thread in the stickies that lists the supplement/vitamin protocol that's recommended by many(as I've gathered from reading posts). I have found a tremendous amount on B12- which was stickie #2, but I cant seem to find the list. I'm sorry to seem so lost but..I am!!

I was diagnosed with lyme disease back in 1999 but think I've probably had it for a lot longer. In what I thought was the beginning, I would get terrible burning skin, mainly in my arms and legs. That fell away but I then had tingly hands and feet off and on for a year or so. Then all of my neuropathy type symptoms seemed to be gone(still had a TON of other things wrong). Then several years ago, I started having terrible achey/throbbing feet that brought me to tears. I was also getting some tingling in my legs and feet. I went and saw a top NYC neuro who did a biopsy and diagnosed me with small fiber neuropathy. I was on IVIG for 3 mos-which was hell- and though my symptoms didnt really improve much-my repeat biopsy showed major improvement(still don't get that one)!

Fast forward 4 years and in the spring of 2009 I woke up with such terrible burning feet. I still have this incredible pain 22 months later and it's been traveling up my legs,spine, random hot spots, etc. I have always had burning in my thighs and stomach at night but was always told it was a lyme symptom NOT neuropathy so I never thought it was the same-and honestly-am still not sure? Anyway, my feet have been burning ever since and I'm terrified at what seems to be a progression up my legs. I am on 3600 mg's of neurontin as of 12 days ago but have been on increasing neurontin for almost 2 years. The med will last about 60-90 days and then I have to increase again. This time around, it doesnt seem to be kicking in and giving me complete relief like it has in the past.

Because of this horrific symptom, I went on the attack against the lyme again. I have been aggressively treating it for almost two years and feel like things with the SFN are only getting worse as I mentioned.

I've been sick with lyme since I was 26 years old. Now, 12 years into the lyme, I have this second disease which is coming across as if it's even more harmful then the lyme(which has stolen a LOT of years from me). I'm in a state of panic and paralysis. The questions that race through my mind are terrifying...AND no DR will give me the answers!!!

I am on a lot of supplements and would be incredibly grateful if someone could point me to the list on this site for comparison...I thank you SO much for any time you could spare!!

Sincerely,
Katie

mrsD

01-19-2011, 02:29 PM

Supplements for each person vary depending on what their problems are.

I suspect your Lyme treatments depleted certain nutrients and this may have led to your current problems.

Some antibiotics also CAUSE neuropathies...the fluoroquinolone family.

So if you post more details of what drugs you took or are still taking, I can look them up for you.
Most drug damage involves DNA and mitochondrial functions.

Nervous

01-20-2011, 11:35 PM

Is anyone using velvet antler?

I am considering using it for improved strength, muscle recovery, energy (hopefully), and well-being.

mrsD

01-21-2011, 09:15 AM

oh....

I researched this a while back. Those elk herds since then have been ravaged by the "wasting disease"...that deer are getting.

Because it is so similar to Mad Cow....I'd be worried about it.

http://www.liebertonline.com/doi/abs/10.1089/107628002320351316?journalCode=act

kate525

01-21-2011, 08:57 PM

Thank you for your reply, Mrs.D!

Oddly enough, at the time this burning started 2 years ago, I hadn't been on any antibiotics in over 3 years. Prior to that I had been on IV Rocephin, not of the fluro. family. I have only been on the cephlasporins, penicillans and cyclenes. I also take antimalarials. As i mentioned in my intial post, I had been experiencing some VERY intermittent tingling over the years but never, ever pain, until I that dreadful day in April 2009. My infectious disease doc argues that PN is quickly becoming one of the biggest symptoms in lyme disease, therefore, I have been treating very aggressively again but w/out any improvement of the PN in two years. Every time I break through the neurontin the pain is so out of this world, I can't believe it's still there and as bad(and as advanced). What now?!

Katie

mrsD

01-22-2011, 07:36 AM

Okay, I will list the nutrients that some of your antibiotics may have disrupted.

Amoxicillin --- depletes

The B complex... B1, B2, B3, B6, B12

inositol
biotin
Vit K
Potassium

And kills the beneficial organisms in the bowel,
Bifido bacteria, and Lactobacillus

Doxycycline

Depletes the same as above,
and also:
Iron
Magnesium

Cephalosporins:

Same as Amoxicillin

It takes time for this all to happen, so you would not see effects at first, but eventually depending on your dietary habits, some things may become too low.

You need to get blood work for both B12 and Vit D3. These can be low ANYWAY in people with PN symptoms. Get your numbers and don't accept "normal", from your doctor, since interpretation is very poor with both of them. Our lab ranges in US do not flag really low levels, but call them normal.

I am unsure that the organism causing Lyme would be affected by any supplements you could take. We would have to know how it targets the nerves exactly.
Nerve damage comes from damage to the insulation around the axons, and also from damage to the cell body, nucleus and mitochondria.
Myelin damage may be helped with B12 (methylcobalamin is best) B6, and folate. There is an RX vitamin called Metanx that is made to target this problem. There are questions that the generic is identical in composition to the brand name, so brand is best. You can buy these ingredients separately OTC.
B6 is called P5P (NOW company makes a good one) and the folate is called methylfolate-- and made by Solgar (Metafolin).

Add to those some Omega-3 fatty acids like Fish oil, at least 3 a day, and you may encourage remyelination.
Magnesium is low in many people (who do not have PN) so taking a good magnesium supplement is advised too.

This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

Vitamin D:
http://neurotalk.psychcentral.com/thread92116.html

Vitamin B12:
http://neurotalk.psychcentral.com/thread85103.html

Supplements for cell body damage, mito damage include:

Alpha lipoic acid ( r-lipoic is newer and I suggest it instead)

Acetyl Carnitine ( helps with chemo damage and AIDs drugs damage, so I suggest it for other drug damage too)

Biotin (works with the carnitine)
CoQ-10 (works with the carnitine + lipoic)

Benfotiamine (this is a fat soluble B1-- that is useful for people with errors in metabolism involving aldehyde and alcohols and which may be genetic too) This is also being used in diabetic
neuropathies now too. If you took metronidazole antibiotic, Benfotiamine would be a choice for you.

Low Vit D is causing many problems for chronic pain and immune issues. So fixing it and getting it up helps many people in many ways.

kate525

01-25-2011, 01:00 PM

Hi Mrs. D...

Thank you for the lengthy reply and your time! I wrote a very detailed resonse several days ago but it's not here? Not sure what I did wrong so I will try to retype as best I can...

I am currently on:

b12 methyl. inj sub Q 1x a week
r lipoic
b1
b6
ala
coq10
fish oil
lcarnatine
probiotics
vd3 50,000 a week
glutathione
folate

I started this complete protocol a little over 2 weeks ago. i'm not certain your recommendation for the amount of B12 injections? How many do you suggest weekly?

I have met with 2 top nuero's in NYC and both stated the lyme disease is rapidly becoming more recognized as a reason for SFN. I can't remember exactly how the nerves are affected but I know the disease attacks every system in the body..cells, nerves, tissues, organs, etc. Naturally the question in the back of my mind is, if there is an underlying disease, will supplements help? My infectious disease doc feels the only way to get at the SFN is to aggressively treat the lyme but I'm not so certain. I've had lyme for at LEAST 12 years that Ive known of and in hindsight probably should have been more consistent in treatment(been on and off IV drugs 5 different times but not consistently- who knew!?). I have been extremely aggressive the past 2 years- since this pain in my feet started-and Ive seen ZERO improvement. In fact, it's begun to advance up my calves a bit. I just increased Neurontin to 3900 mgs and it's not cutting it.

This has been quite the battle and I'm truly not sure if I'm targeting the RIGHT thing here...

Any suggestion/advice would be greatly appreciated!! I thank you so much in advance for the time it may take to reply..

BTW, is it appropriate for me to reply here or should I PM you??

Kate

mrsD

01-26-2011, 05:43 AM

I think, Kate, that you would get better and faster improvement with oral B12.... 5mg orally each morning on an empty stomach (no food for 1 hr).

There are recent studies showing oral works, as long as it is used correctly. It works for me! Others here have posted success too.

Injections only stay in the serum for 72 hrs. Oral provides B12 daily and is similar to eating it in food. Our bodies are tuned to that oral route. You will want to get methylcobalamin form, for best results. This is not expensive, and you can find it at iherb.com or Puritan's Pride. (I tested out the Puritan's form recently and my blood work showed it worked wonderfully).

I would add magnesium to your list. Either SlowMag or a good chelate (like glycinate). Magnesium is critical for getting fats metabolized properly, including your fish oil.

kate525

01-26-2011, 08:38 AM

Thank you! I have Methyl B12 1000 (Jarrow) that I take once a day. In order to reach the amount suggested here, do you agree taking 5 of these is sufficient or should I look for something different? Are you on pain meds as well?

Katie

kate525

01-26-2011, 09:08 AM

Ok, did the conversion..guess I'd need a whole lot if I did it this way :p!

So, Im searching for a 5 mg version...do you have a suggestion for purchase and do you recommend capsule or lozenge?

Thanks!

mrsD

01-26-2011, 09:34 AM

The only pain meds I use are :
Tylenol
Aleve... I rotate these to reduce side effects...
And
tramadol for very bad nights.

I do use topical things, like Biofreeze more often. Salonpas patches, and sometimes Lidoderms.

If you are very low in B12... 5mg daily would be best for about 3 months, then have another test taken, and if you are high like I am you can reduce. If you are not really low in B12 but just want more, the 1mg should be enough. Be sure to take on an empty stomach, as food messes up the absorption orally.

In people with no intrinsic factor, the oral which is about 500 times stronger than food, will be passively absorbed in 1-10% amounts. The RDA for B12 is 2-4 micrograms, when intrinsic factor is working properly.

Puritan's just offered methyl B12, so I bought some and took for 3 months before my last test. I typically hover around 800 normally. With 5mg daily I tested out at 1999 (which I believe is the max the test can do).

kate525

01-26-2011, 06:52 PM

Hi Mrs D.,

I just went through my records and found that my B12 is 550(prior to taking any B vitamins), and B1 plasma is 15. With levels like this, is it likely Vitamin B is not the culprit here? And if B is not the culprit, can it still help in healing?

Katie

mrsD

01-27-2011, 08:31 AM

On my B12 thread, I have a copy and link to Dr. Snow's article.

This research article has changed the way doctors should view B12 issues in people.

http://neurotalk.psychcentral.com/post698522-70.html

He states in that article that some few people will test out at 400 or close to and still have neuro issues. He recommends taking the B12 anyway for those patients.

You know there is a transporter to the CNS that moves B12 from the serum to the brain and spinal cord. That could not be working properly. Also people tend to store B12 in the liver, so if that is overactive it would pull B12 out of the serum making it unavailable to other sites. So there may be factors what exist in some people that just require higher levels.

Dr. Snow states that B12 is so inexpensive and benign it is not sensible to withhold it when neurological symptoms are present.

I really don't think the sublingual is very efficient. You end up swallowing the dissolved B12 in your saliva. The B12 molecule is huge and not easily passed thru membranes.

So most are sublingual...I just chew them and swallow them.

But one to avoid is "extended release".

There is a new one coming which I expect to be more expensive.
If you find this please let us know about it:
http://findarticles.com/p/articles/mi_m0887/is_10_27/ai_n30959773/

I expected it here by now...

kate525

01-27-2011, 09:40 AM

When my B12 was tested it was about 4 months after the neuropathy had started to turn to pain. In order to stop the neuropathy, i went on ridiculous amounts of antibiotics and remian on them today(oral VS IV now however). They may have prevented the neuropathy from healing if they soaked up the B12 I had. I am going to request another look and will stay on them as Dr. Snow mentions. I have other neuro problems as well so at this point, why not?!

I recently had heavy metals testing done(not sure how reliable the testing is) and I came back high for mercury, lead and gadolidium. The integrative doc I see naturally feels I should chelate (orally not with IV) and of course get all my mercury fillings out :eek:!! I have read that mercury can cause neuropathy so of course it peaks my interest but I was wondering if you've got an opinion on metals and/or if you have any valid articles to point my to?

Lastly, I'm preplexed over the neurontin. I understand I should never stop with out counsel from my doc but i doubt he would ever advise it since it's all he's got to offer(plus IVIG). I have such pain in my feet w/out it, I don't know how I could survive. When it's doing it's job, I feel nothing! Bear in mind I am still fighting a ton of other issues from the lyme so the relief is MORE then welcome. However- I HATE HATE HATE being on pain meds like this and know that my body prob can't tolerate going up much higher then I already am-3600. How do people like yourself survive the pain? Or, has your pain loevel decreased to where it's "tolerable?" I know you listed your meds but none of them are real big guns, w/ the exception of the ocassional Tramadol. In additon to the Neurontin Im on 150 of Trileptal and .05 of Ativan for sleep at night. If I were to come off and truly gage the pain(as of right now when I break thru the meds the pain is round the clock with no trigger-it just "is") are these meds the type one could get back on with the same efficacy?

Sorry for the long reply!

Kate

mrsD

01-27-2011, 10:22 AM

My most severe pain was when I was hypothyroid.

I just have that "endurance" personality!

I only used pain opiates one day after my 15in long C-section, too. Opiates make me very depressed and sick feeling.

I also use high gauss magnets at times. But not every day.
http://neurotalk.psychcentral.com/showthread.php?t=118248&highlight=magnets
Magnets work best when placed over the offending nerve before it gets the the spine. I use the graphics mentioned on that thread to help with placement. Same idea as with Lidoderms.

I've been using d-ribose, to increase mitochondrial functions and it also helps me sleep better. This then translates to less pain.

But remember I have been on many supplements for a decade.
This helps too.

I believe the Vit D3 has been especially useful.

My PN is of the burning type, when active. I control it now by avoiding nightshade veggies and MSG which really trigger it.
Biofreeze really helps with burning.

Some people have food intolerances which make for more issues. So you may have to do an elimination diet to see if you are triggered by gluten, nightshade, citrus, or dairy.

kate525

01-27-2011, 10:36 AM

Interesting! My docs "thought" I had Hoshimoto's because one test showed the antibodies but several done thereafter have been either borderline or w/in range so there's been no treatment. Thyroid issues can cause neuropathy?! I'm learning new things every day on here.

WOW, you are tough!! I have such a high pain tolerence for surgeries(2 csections as well w/ no follow up meds other then motrin), headaches, body aches, etc. but THIS is unlike anything i have experienced. Sometimes I contemplate getting off the meds to see if I could adjust- and then my husband says- WHY would you do that when you can get a couple more months pain free?! And of course, that makes sense too :) I am raising little girls ages 6 & 2with no fmaily around ..and well..they're girls, need I say more!:rolleyes: I need all the help I can get! :) Every time I break thru the neurontin, I go as long a sI can before increasing. This last time I made it 3 weeks but finally couldnt take it anymore and gave in. Since im unwilling to go higher, I will be learning to "adjust" in 2 months w/out choice anyway as I'll break through again.

Did you have any thoughts on the metals?

mrsD

01-27-2011, 11:10 AM

If you tested high on the metals, I'd do the chelation.

It will remove beneficial things too...like copper and zinc, but most doctors will tell you to take supplements after.

Some things naturally chelate:
selenium is supposed to help remove mercury
(don't go over 200mcg/day for any length of time--- but if you are not getting selenium in you food, 100mcg a day may help)

And Alpha lipoic acid too.
This is an article about r-lipoic
http://www.advance-health.com/rlipoicacid.html

Nervous

03-17-2011, 12:53 PM

The supplements aren't working for me this month. :confused: I am having my worst ever symptoms of pain and burning.

I took 2 mg of melatonin to help me sleep last night. Could that be making things worse?

mrsD

03-17-2011, 05:46 PM

No I don't think melatonin can hurt.

But the shifting weather can! I've been sneezing up a storm today, and very tired... the wet leaves and mold are bothering me and the sudden barometric pressure shifts are disturbing.

I am going to have to restart my grapeseed extract now! ;)

We've had some friends around here complaining too. So whatever makes nonPN people miserable can make us miserable too on top of everything else! Just my opinion.

Nervous

03-20-2011, 06:50 PM

For several months, I have been taking 1 gram per day of d-ribose in the hope of improving my energy level and resolving some of my fatigue. Disappointingly, I had mild to no result at 1 gram per day.

Recently, mrsD posted a link to a fibromyalgia site that recommended 15 g per day of d-ribose ( http://www.fibroandfatigue.com/the-amazing-d-ribose.html ). I was prepared to take 15g, but I found noticeable improvement, for the moment, with 10 g. This is a small miracle for me, since fatigue has prevented me from doing much of anything at all. The effect of the larger dose was immediate and I now have the energy to get through the day, go to work and exercise. Let's hope things continue along this line.

N.B. I found a note on webmd.com that recommended d-ribose doses as high as 60 g per day.

mrsD

03-21-2011, 07:58 AM

I posted here that I started at 2.5grams a day and worked up to 10, which I didn't like, and then dropped down to 7.5grams which is where I stayed.

I don't feel comfortable in those high ranges--- the people who use it that way, commonly, are body builders who are putting on alot of muscle weight would would mean more muscle metabolism stress.

The link in my ribose thread contains a study, about whether ribose can cause elevated blood sugars. Since many here are possibly insulin resistant at least or prediabetic or impaired glucose tolerance and maybe some diabetic I don't feel comfortable giving advice in really high ranges without the research behind it to explain effects on blood glucose.

One gram a day, is not very much for this supplement. But over time it might still lead to some small improvements. Ribose is not common in our food chain.

When one purchases the d-ribose powder, (not capsules), it typically comes with a scoop. 10 grams/ teaspoonful. This supplement is meant to be taken by the gram.

Nervous

03-21-2011, 10:47 AM

I see that I must make a correction to my post above.

I had been taking 5 grams per day with little or no result. Then, I upped the dose to 50 grams per day with very good result.

mrsD, I'll have to track down your d-ribose thread and review it again, and do more research on side effects of d-ribose. I don't have diabetes or blood sugar issues (yet), and I would hate to have to give up this supplement and lose its effects, as it has made all the difference for me.

Thanks, as usual, for your great information and circumspect advice!

mrsD

03-21-2011, 11:18 AM

Well if 50 grams works for you, then maybe you really need it that high.

I don't feel comfortable with that high dose, because of that link, and also because high use of ribose may increase uric acid in the blood, and cause gout. This was mentioned in that link too, and also in this one:

http://chronicallyme.wordpress.com/2009/04/03/can-d-ribose-make-you-sick/

Gout is very sneaky. In fact I think my ankle which has been bothering me alot for months may be gout, because of the reduced blood flow I have in it from the previous surgery.
My doctor agrees, and I have a slip for blood work, which I will take in next week to the hospital for testing.
You can have high levels of uric acid and no gout attacks, for a long time and boom... then you get one. So increasing uric acid in people with this tendency (some drugs like diuretics cause it too) is really not safe here either.

At the doses I used, I found a steady slow improvement with time. Perhaps taking more will give faster results, but once you are up there where you want to be, I'd consider slowing down on the ribose some, to a steady state lower maintenance amount. There are no studies on chronic use...but I suspect the systems get saturated over time, and the high amount may no longer be necessary. (unless you are building new muscle at a fast rate).

Keep in mind I don't have blood work on people here in front of me like a doctor would, to guide advice. I give conservative advice, and let the readers decide for themselves. That means it becomes YOUR responsibility to choose whether to take something and how much. Many people tolerate high doses of things that others can't. It is really impossible on the net to predict who is who.

I do think you understand that.

Nervous

03-21-2011, 11:56 AM

I hesitate to say this, because it sounds a little hysterical, but d-ribose at 50 g has been a little miracle for me. I feel like, in a fews days' time, I have gone from 1% energy level to 80% energy level. Nonetheless, I'll have to study the subject more.

It sounds as though you are saying that there is, or might be, a difference between an initial, effective treatment dose (say, 50g) and a lower, maintenance dose (say, 7-10 g). Yes?

mrsD

03-21-2011, 01:14 PM

Yes, that is how biological systems work. They are what is called in chemistry "rate limited", meaning that fixed ratios of things work, based on the chemical reactions ongoing. Enzymes are needed in biological systems to hook things up...and they are often in limited amounts. Once filled, no more can be put thru until those enzymes are empty again.

Once the system is going well, the ratios may fill up and then some ribose may be hanging around extra. You can just tinker down, a bit and see if you hold your benefits. You can always go back up if need be. Ribose is also expensive, so if you maintain at say 1/2 your dose or less you will save some money too.
Just go down slowly.

Your reaction is a good sign... and I'd take it that you have some mitochondrial stress and this is working for you to improve ATP production.

Nervous

03-21-2011, 07:15 PM

Your reaction is a good sign... and I'd take it that you have some mitochondrial stress and this is working for you to improve ATP production.

I am taking it the same way. For fifteen years, I've been complaining to doctors about fatigue and lack of energy. My complaints didn't interest them.

Nervous

03-21-2011, 07:34 PM

Here's a summary of what I have understood so far.

-- D-Ribose is widely believed to be safe.

-- There is some evidence that d-ribose may elevate blood sugar levels (hyperglycemia). However, there seems to be about the same amount of concern that it may lower blood sugar levels (hypoglycemia).

-- There is some concern that d-Ribose may elevate blood levels of uric acid, which may lead to gout or kidney stones. However, regardless of whether d-Ribose elevates uric acid levels, there is less than universal acceptance of the idea that high blood levels of uric acid causes gout or kidney stones.

-- A hedge against high uric acid levels may be strawberries.

-- A hedge against kidney stones may be drinking adequate water each day. (A doctor recently told me that he has had five kidney stones, and it is his understanding that a predisposition to kidney stones may be congenital. Other than that, he didn't have too much faith in the "drink plenty of water" idea.)

-- While I haven't spent a lot of time on this, I still have not found anyone on the net or anyone among my healthcare providers (e.g. just saw my chiropractor today) who knows of anyone who has experienced gout or kidney stones as a result of taking d-Ribose.

That's it so far. I hope that, if she is so inclined, mrsD will correct anything that I have gotten wrong here.

mrsD

03-22-2011, 12:51 AM

That seems to be a good synopsis in general.

Gout or elevated uric acid levels is a genetic defect as far as I know. Primary uric acid level increases are due to a defect in metabolizing purines.

Secondary uric acid elevations can come from sudden purine flooding the system, which can occur during chemotherapy for leukemias. The elevated white blood cells die at a rapid rate and flood the enzymes so they cannot remove the uric acid produced quickly enough, so gout may occur in a person who does not have the genetic defect. Usually treatment which is temporary, helps this, and is discontinued when the chemo is over.

Some people who are borderline with uric acid problems can have gout attacks when getting over infections. During infections, white cells increase, and then are metabolized away after. This can initiate a gout attack in some people.

I don't think changing food intake has been found to be helpful for gout patients. In the old days, avoidance of rich foods and alcohol were advised. Even Legumes were to be avoided. But now it is pretty well accepted that gout is an internal disease and not that responsive to diet.

Gouty arthritis may also be called pseudogout...and involves calcium rather than uric acid. It presents as "gout" but it is not really because there is not the corresponding elevation of uric acid.

I really don't think the fruit thing is effective enough for genetic uric acid elevations. But it might help with pseudogout.

Typical treatments may include potassium citrate to change pH of the urine, or sodium bicarbonate. These may be more effective than fruit intake.

What bothers me is that ribose is not plentiful in foods. If our bodies were primed (evolved genetically) to need this sugar in large amounts, we'd see it in more food sources. It is present in riboflavin, Vit B2.
But even then intake of this vitamin is quite low.

When we take substances in mega amounts, we have to be very careful.
This concern has also been watched for B12 ...but research has been done on that, showing no toxicity in large doses. I don't think we have the same level of studies on ribose. So some caution should be followed.

Many bodybuilding sites, recommend huge amounts of supplements and high doses of some. Creatine is one. That one also remains controversial. Building muscle rapidly is different from maintaining a body type.

So please be vigilant if you have any side effects down the road with the ribose in high doses. Maintain good hydration also.

Next time you visit the doctor, you can request a uric acid level blood test. That should show if you have a potential for gout.

mrsD

03-26-2011, 02:11 AM

I found this article today while searching Taurine for my kitten.

http://www.ncbi.nlm.nih.gov/pubmed/21437784

Amino Acids. 2011 Mar 25. [Epub ahead of print]
The potential usefulness of taurine on diabetes mellitus and its complications.

Ito T, Schaffer SW, Azuma J.

Department of Pharmacy, School of Pharmacy, Hyogo University of Health Sciences, 1-3-6 Minatojima, Chuo-ku, Kobe, Hyogo, 650-8530, Japan.
Abstract

Taurine (2-aminoethanesulfonic acid) is a free amino acid found ubiquitously in millimolar concentrations in all mammalian tissues. Taurine exerts a variety of biological actions, including antioxidation, modulation of ion movement, osmoregulation, modulation of neurotransmitters, and conjugation of bile acids, which may maintain physiological homeostasis. Recently, data is accumulating that show the effectiveness of taurine against diabetes mellitus, insulin resistance and its complications, including retinopathy, nephropathy, neuropathy, atherosclerosis and cardiomyopathy, independent of hypoglycemic effect in several animal models. The useful effects appear due to the multiple actions of taurine on cellular functions. This review summarizes the beneficial effects of taurine supplementation on diabetes mellitus and the molecular mechanisms underlying its effectiveness.

PMID: 21437784 [PubMed - as supplied by publisher]

It is rather a new paper. I have used taurine for sluggish gall bladder issues in the past. And I have seen it listed as a supplement for people with insulin resistance.

I think one would need at least 1000mg a day. Perhaps 2000.

axseptants

04-11-2011, 09:49 PM

Mrs. D - Thank you for sending me the link to all the posts about supplements for PN and the links to articles about PN (causes, diagnosis, and treatments). All very helpful!!!

I know all supplements/treatments won't work for all types of PN. What do you know about PN caused by autoimmune disorder, like Sjogren's Syndrome, or caused by autonomic nervous system dysfunction. If PN has one of those causes, will supplementation still be effective? Or is PN that is caused by autoimmune or autonomic problems less responsive to supplementation therapy? I can't remember where I got this sense, but I remember seeing this somewhere. Hopefully I am wrong.

Thank you.

mrsD

04-12-2011, 05:56 AM

There is a connection to immune dysfunctions and low Vit D.

So getting that tested is important.

Also autoimmune issues have inflammation present, so using things that dampen inflammation would be helpful.
Fish oil 3 a day (or Krill oil, 2 or 3 a day)
antioxidants, like grapeseed extract, enhanced absorption curcumin, and/or astaxanthin may help. I use 200mg of grapeseed extract for my arthritis and seasonal allergies.

Sometimes there are more than one thing going on. People can have multiple problems. ;)

If you are having fatigue, then supplements that improve energy in the mitochondria may help. R-lipoic acid, acetyl carnitine, and/or the ribose may help that.

Inflammation can be fueled by diet and food choices. So eating an anti-inflammatory diet may help.
You can look up inflammatory indexes on this site of your food:
http://nutritiondata.self.com/

Getting rid of sugars in all forms is a good first step. Increasing insulin in the body increases inflammatory actions. So eating a low carb, high protein, moderate good fats, diet is helpful.

Nervous

05-04-2011, 09:53 AM

A study reported in yesterday's New York Times stated that high levels of CoQ10 correlated with higher incidents of certain very aggressive forms of prostate cancer. There was also something about high levels of omega-3.

Anyone else see this in the Times?

mrsD

05-04-2011, 10:17 AM

This is the article I believe:
http://www.nytimes.com/2011/05/03/health/research/03patterns.html?partner=rss&emc=rss

No where does it state what high levels were.

How much fish oil had to consumed to give those "high" levels.

With nutrient research there is typically a back and forth of positive and negative outcomes. Some depend on who does the research and how the study participants were chosen.

I'll see later if I can find the study on PubMed... can't do it right this minute...but later I will try.

Quickly I found this that quotes a Harvard study showing the reverse:
http://www.huffingtonpost.com/craig-cooper/fish-oil-benefits-_b_832661.html

Nervous

05-04-2011, 11:19 AM

Quickly I found this that quotes a ... study showing the reverse.

It seems like we often find ourselves in this position. It's hard to make good decisions when the arguments can go either way.

Personally, I am backing off of my supplements routine this week. The reason is that I tend to go overboard and pile everything on. I think that can be hard on my body. So, I'm adding things back a little at a time. I don't know if I will "feel" when I have reached the correct dose of something like Vitamin D, but I will see how things go.

mrsD

05-04-2011, 11:27 AM

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.

Nervous

05-04-2011, 11:35 AM

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.

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.

mrsD

05-04-2011, 11:46 AM

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.

Nervous

05-04-2011, 11:53 AM

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.

mrsD

05-04-2011, 11:59 AM

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.

Nervous

05-04-2011, 12:11 PM

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.

mrsD

05-04-2011, 12:14 PM

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.

Nervous

05-04-2011, 12:16 PM

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.

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

mrsD

05-04-2011, 12:24 PM

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".

Kipra

09-05-2011, 03:03 PM

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?

mrsD

09-05-2011, 03:40 PM

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.

mrsD

10-17-2011, 07:04 AM

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

NeuroLogic

01-05-2012, 08:03 AM

Coenzyme Q10 (http://en.wikipedia.org/wiki/Coenzyme_Q10) (CoQ10) is present primarily in the mitochondria.

In a thread on this site, (http://neurotalk.psychcentral.com/thread80999.html) 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 (http://www.uwyo.edu/bio1000skh/lecture17.htm)."

Statins (http://www.spacedoc.com/neuropathy_statins.htm) 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 (http://health.msn.com/health-topics/articlepage.aspx?cp-documentid=100220332&page=2).

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

"CoQ10 has an excellent safety record. (http://www.ncbi.nlm.nih.gov/pubmed/16551570)"

Related Article: Bioavailability of CoQ10 by Dimitri Papadimitriou, Ph.D. (http://www.naturalproductsinsider.com/articles/2005/04/bioavailability-of-coq10.aspx)

NeuroLogic

01-28-2012, 04:43 PM

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:

Enzyme activation... nerve impulse transmission...

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.

mrsD

01-28-2012, 05:32 PM

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.

Sallysblooms

01-28-2012, 08:43 PM

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/neurological/neuropathy_01.htm

NeuroLogic

01-29-2012, 07:04 AM

I take 500mg a day Ester C.

How did you decide 500 mg?

mrsD

01-29-2012, 07:19 AM

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/articles/53-diabetes-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.

NeuroLogic

01-30-2012, 03:51 PM

Researchers discovered that vitamin C is a key nutrient needed to keep retinal cells functioning properly, and they speculate these benefits extend throughout the nervous system. Specifically, special receptors (called GABA-type receptors) in the eye and brain stop working properly when vitamin C is not present. These receptors facilitate communication between brain cells by keeping neurons in the brain from getting overly excited, which may explain the depressive symptoms seen in people with gross vitamin C deficiency known as scurvy. (Journal of Neuroscience, June 2011)

"We found that cells in the retina need to be 'bathed' in relatively high doses of vitamin C, inside and out, to function properly," said Henrique von Gersdorff, Ph.D., a senior scientist at OHSU's Vollum Institute and a co-author of the study. "Because the retina is part of the central nervous system, this suggests there's likely an important role for vitamin C throughout our brains, to a degree we had not realized before."

The brain has special receptors, called GABA-type receptors, that help modulate the rapid communication between cells in the brain. GABA receptors in the brain act as an inhibitory "brake" on excitatory neurons in the brain.

http://www.sciencedaily.com/releases/2011/07/110715135353.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.

MzBeanz

01-31-2012, 05:07 PM

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 :)

mrsD

01-31-2012, 05:49 PM

Nabilejlm

02-03-2012, 11:45 AM

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.

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 :)

MzBeanz

02-03-2012, 11:57 AM

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

mrsD

02-03-2012, 12:00 PM

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.

MzBeanz

02-03-2012, 12:04 PM

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

mrsD

02-03-2012, 12:18 PM

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.

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

MzBeanz

02-03-2012, 12:34 PM

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.

mrsD

02-03-2012, 12:47 PM

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!

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.

MzBeanz

02-03-2012, 12:54 PM

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...

mrsD

02-03-2012, 12:59 PM

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.

MzBeanz

02-03-2012, 01:54 PM

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

mrsD

02-03-2012, 02:18 PM

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.

Nabilejlm

02-03-2012, 04:10 PM

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 goof.

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.
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?

mrsD

02-03-2012, 04:21 PM

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.

Nervous

02-04-2012, 11:15 AM

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.

Sallysblooms

02-12-2012, 03:53 PM

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.:)

mrsD

02-12-2012, 04:33 PM

I just added this study to my Benfotiamine link:

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

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.

Nervous

02-12-2012, 07:08 PM

Sallysblooms

02-12-2012, 11:36 PM

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. :)

Idiopathic PN

03-11-2012, 08:34 PM

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

Pain Treatment Topics (http://pain-topics.org/clinical_concepts/vitamind.php)

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:

The Full Report states the the pain levels (from trial) improved from 'distressing' to 'mild'.

.

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.

Sallysblooms

03-11-2012, 09:10 PM

Whoops, I left out Benfotiamine in my post.

mrsD

03-12-2012, 05:50 AM

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.

Some doctors are suggesting to cut back on calcium supplements to 600mg a day tops, when taking high dose Vit D.

http://www.trackyourplaque.com/blog/2010/06/increased-blood-calcium-and-vitamin-d.html

Idiopathic PN

03-18-2012, 10:24 AM

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:

http://www.ncbi.nlm.nih.gov/pubmed/8929745

Dear Mrs.D,
I would like to try Benfotiamine, when I went to search Benfotiamine, I think I saw Benfotiamine with Carnisine and Benfotiamine with Thiamin (or even Benfotiamine with V - whatever that was). Which one are you recommending?

For a start, I'd like to take the 150mg. If I am right, you started from 300mg then reduced it to 150mg. I am sensitive to most medicines/supplements so I will try first the 150mg. Do think that is enough?

Thank you.

mrsD

03-18-2012, 10:48 AM

Idiopathic PN

03-18-2012, 12:07 PM

I'd get the Doctor's Best Benfotiamine 150mg.

If you are worried about high doses, just do 150mg a day.

If you get no negative reactions, you can increase to 300 for a couple of months and see if that helps.

I'd stay away from mixtures of things. You cannot control mixtures or see what is really doing what.

I say this about "reactions". I had great hopes for NAG-- n-acetyl glucosamine, but it seems to inflame my nerves worse.
I never expected that, since I have used glucosamine in the past (with not much results). I've tried 3 times, and got inflamed nerves all 3 times!

Mrs. D,

Please tell me if my supplements now are fine. Please take note that my prescribed medications are Synthroid, Gabapentin and 3 eye solutions for my dry eyes (i have no Sjogren's Syndrome) ---

1. Methyl B12 - empty stomach
2. Multivitamin
3. Vit C - 500mg 2x a day
4. Vit E - 400mg 1x a day
5. Selenium - 200 mg 1x a day
6. Omega 3,6,9 - 800mg 2x a day
7. Glucosamine (stopped starting today)
8. Calcium with VitD - 600mg and 400mg, respectively 1x a day
9. Vit D3 - 2000mg 1x a day (taken together w/ Calcium - taken 5hours after Synthroid)
9. CoQ10 100mg - 1x a day (taken at night together with the 2nd VitC and Omega)

To add:
1. Benfotiamine 150mg - 1x day - Mrs. D, can I take this together with VitB12, or can this be taken with the other supplements? Does this affect absorption of other drugs?

Plan to add after thyroid stabilizes:
1. R-Lipoic
2. Acetyl L-Carnitine (I am not s ure if this is the right one)

Please feel free to recommend what you think is best.

Thank you very very much.

mrsD

03-18-2012, 12:12 PM

Looks good to me. I think Benfotiamine has better absorption than thiamine:

http://neurotalk.psychcentral.com/post850997-117.html

I think you can take it with your other supplements that don't need empty stomach.

mrsD

03-19-2012, 06:27 AM

Idiopathic PN

03-19-2012, 09:29 AM

@IdopathicPN

You want to make sure your kidneys are working normally with all those supplements.

And check your multivitamin to see if it has selenium in it.
If so 200mcg daily extra is a bit much... you could take it every other day instead. The new suggestions on selenium today are more conservative than they were 5 yrs ago. 100mcg daily is
now the suggestion upper limit.

Oh, thank you so much Mrs. D for this "warning". My multivitamin has Selenium (as Sodium Selenate) 55mcg and says that its 79% of daily allowance. Now, I think I will stop Selenium. The only reason why I started on it recently - it says it protects the liver. I am concerned that with all the medications and supplements I am taking, I would want to protect my liver.

mrsD

03-19-2012, 09:40 AM

ger715

03-19-2012, 11:22 AM

Selenium also is a cofactor in conversion of T4 to active T3.

So some IS needed. I would keep it at 100mcg a day by using the 200mcg only occasionally. As I figure it 325mcg a week (7 day period) would bring you up the the RDA.

So taking 1 of those 200mcg selenium a week would do it pretty closely.

I am a little confused about the selenium. My daily multivitamin does not contain the selenium. I do take daily:
100mg. R-Lipoic (empty stomach)
2mg. MethylCobalamin (empty stomach)
150mg (2x's a day = 300mg's daily)
3,000mg's D daily (per doctor/tests)
Multivitamin (no selenium)

A while back ago, I purchased from iherb:

Best Ubiquinol (Kaneka QH) 100 mg softgels

Bluebonnet Chelated Magnesium 200mg+
(buffered magnesium glycinate chelate) VCap)

I have not taken any of the above because I was unsure if I should take them or not.

I am on Oxycontin, as well as Percocet for breakthru for PN pain.

Should I add the selenium to my daily diet? Also should use the Ubiquiol and the Magnesium?
Thanks for your help,
(Ger)

mrsD

03-19-2012, 11:32 AM

mrsD

03-20-2012, 06:18 AM

Taurine is one supplement recommended by some doctors for diabetics. Dr. Jensen, MD, recommends this in her book.
http://obesitysanswer.com/

Taurine has a value for older patients who can no longer make it for themselves:

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

This monograph is very good:
http://www.webmd.com/vitamins-supplements/ingredientmono-1024-TAURINE.aspx?activeIngredientId=1024&activeIngredientName=TAURINE

I really think for our purposes here, 1 to 2 grams a day is probably enough.

Taurine is inexpensive and has no side effects to speak of.
It is something to think about here, if you are older, have glucose control problems, or are very overweight. Taurine is very helpful for sluggish gall bladder issues, and I've used it myself for that. I also supplement my cats, when they have
human food/or tuna because cats cannot make their own taurine.

There is a product called magnesium taurate...by Cardiovascular Research. It supplies both magnesium and taurine, and is used by
cardiac patients, and some Tourette's patients.

http://www.magnesiumtaurate.net/
It used to be more expensive, and difficult to find. But both of those issues have changed. It is one option some readers here might
consider.

Idiopathic PN

03-20-2012, 10:13 AM

ger715

03-20-2012, 08:30 PM

If you don't eat nuts, or fresh produce, whole foods, you might need the selenium. It is mostly critical for thyroid people.

It is one of the cofactors in converting T4 to T3 in the tissues.

Most multivits have some selenium in them. The mega types, can go as high as 200mcg each. But in the recent past has been
suggestions to keep multivits below 100mcg.

You could just use a Centrum Silver, as it has lots of minerals for seniors including selenium.
http://www.drugstore.com/centrum-silver-multivitaminmultimineral-for-adults-50-tablets/qxp72901?catid=98032&fromsrch=centrum
Less than Idiopathic's formula, in fact.

I had also mentioned, in my post, purchasing the Chelated Magnesium 200mg+ and the Doctor's Best Ubiquinol100mg featuring Kaneka QH. I had purchased them thinking this would be good for the PN, but was a bit concerned because of all the other supplements I am already taking, so I have not been using them. Again, would appreciate any input you could give me regarding using these supplements as well.
Thanks,
(Ger)

mrsD

03-21-2012, 03:29 AM

ger715

03-21-2012, 10:45 AM

Magnesium is always appreciated by our bodies. 200mg a day is about 1/2 the RDA and a good dose to start at. If the magnesium loosens you that shows some is not being absorbed.

The ubiquinol is also easily tolerated. You don't need high doses of this like with regular CoQ-10. So as far as side effects go you should not have any at 100mg a day.
If after a month or two you don't see any response from the ubiquinol, you can probably stop it. People taking statins or other drugs that deplete it need to supplement it.
(diuretics, antipsychotic tranquilizers, long term amitriptyline/nortriptyline, beta blockers, some of the oral antidiabetics)

Both will work together to help your mitochondria and also
the metabolism of essential fatty acids from your diet.

I really do appreciate your patience. Some questions come to mind...... You mention, if Magnesium loosens, show you that some is not being absorbed. Does this mean a hgher dose is required? Also, because of the high dose of narcotics; take daily laxatives.

Regarding Ubiquinol...I am taking some of the drugs you mention (duretics, amitriptyline, statins); does this mean all the more reson to take the Ubiquinol?

Do either of these two help in the improvment of PN??
Again, thank you.

(Ger)

Nervous

03-21-2012, 11:02 AM

Magnesium is always appreciated by our bodies. 200mg a day is about 1/2 the RDA and a good dose to start at. If the magnesium loosens you that shows some is not being absorbed.

The ubiquinol is also easily tolerated. You don't need high doses of this like with regular CoQ-10. So as far as side effects go you should not have any at 100mg a day.
If after a month or two you don't see any response from the ubiquinol, you can probably stop it. People taking statins or other drugs that deplete it need to supplement it.
(diuretics, antipsychotic tranquilizers, long term amitriptyline/nortriptyline, beta blockers, some of the oral antidiabetics)

Both will work together to help your mitochondria and also
the metabolism of essential fatty acids from your diet.

I'm not sure when to apply this rule. For example, I do not see any response to Vitamin C, yet I know tat the body requires it. So, I'm a bit puzzled.

mrsD

03-21-2012, 11:07 AM

Nervous

03-21-2012, 11:12 AM

Low Vit C and you may have more bleeding gums, mouth irritation, more frequent colds, bruising more easily. Aches and pains, arthritis joint issues.

But many nutrients are silent until you get low and symptoms
begin.

Magnesium= better sleep, less tension, less twitching,
better sugar metabolism/control, etc. You cannot feel your bones strengthen, until you don't and break one. A lot of mental improvements. We cannot however, feel repairs being done
on the cellular level, until many cells are broken.

Okay. But in the case of CoQ10/ubiquinol, we are nourishing the immune system, no? So, how do we gauge a response on that? Is it like "I got only one head cold this winter, so my CoQ10 must be helping my immune system"?

mrsD

03-21-2012, 12:18 PM

I really do appreciate your patience. Some questions come to mind...... You mention, if Magnesium loosens, show you that some is not being absorbed. Does this mean a hgher dose is required? Also, because of the high dose of narcotics; take daily laxatives.

Regarding Ubiquinol...I am taking some of the drugs you mention (duretics, amitriptyline, statins); does this mean all the more reson to take the Ubiquinol?

Do either of these two help in the improvment of PN??
Again, thank you.

(Ger)

When magnesium is not absorbed from the GI tract it moves on to the large bowel, and is a laxative. It is a sign you are taking too much rather than too little. Or the type (if Oxide for example) is being used. All of the magnesium orals are only partly absorbed. Not near 100% at all. In fact calicum (when not used with Vit D is only absorbed about 20% per dose. People don't know that.

Our bodies make CoQ-10.... so unless something is happening to upset that chemistry, it is not considered an essential nutrient. Magnesium is essential, Vit C essential, and many of the B's essential including B12.

We make carnitine, taurine, CoQ-10, normally, so when these supplements fail to show improvements of any kind, after a few months, it is probably safe to stop using them.

There is no general rule... but after you read about them for a while you get the impression of which are critical and which are less so. It is a learning process.

CoQ-10 does many things...mostly to help muscle energy requirements, but it works in the mitochondria for any energy purpose. In general when I feel "better" in any way on something, I keep it. We are lucky that most of the PN supplements are rather benign and won't hurt to use for a short time. They tend to be expensive overall, but not hurtful. Other disease states do not have this luxury, that we have here.

mrsD

03-21-2012, 12:24 PM

And yes, anyone depleting CoQ-10 would do wisely to take some.
Watch for any improvements to gauge if it is helping. The most likely obvious thing with CoQ-10 is less fatigue and more stamina as it helps with the heart and muscle energy requirements.
Some people with Parkinson's use very high dose CoQ-10 to help with tremors because those cells may have damaged mitochondria in the brain. Each person will have different responses depending on their own weakness/error in chemstry.

This is why I don't like big combo mixture products for PN.
When several are mixed together in one pill...you cannot tailor your doses to what YOU need. Because all of us are different in what we need.

Idiopathic PN

03-28-2012, 02:30 PM

Dear Mrs. D,
I will start the Benfotiamine today.
I will also order online the R-Lipoic and Acetyl L-Carnitine this week.

Assuming I have a reactive hypoglycemia, are these supplements safe to take?

Can the Acetyl L-Carnitine be taken together with my other supplements?

You mentioned in one of your posts in this thread that our body makes CoQ10and if no improvement is "felt" after so many months, it is safe to discontinue. But if one would want to continue using it, is it safe to use for a longer period of time just like Vit E and C?

What about Benfotiamine, R-Lipoic and Acetyl L-Carnitine, can they also be taken for a long period of time?

Thank you so much Mrs. D! :)

mrsD

03-28-2012, 02:51 PM

Idiopathic PN

03-28-2012, 04:20 PM

mrsD

03-28-2012, 04:30 PM

Side effects from R-lipoic may be irritability or anxiety. Not all of our posters here get this. But I did and a few others.

Take the R-lipoic on an empty stomach for best absorption.

You may not see anything at all.

Acetyl Carnitine comes in 250mg also...from Puritan's pride.
The carnitine allows your body to metabolize fatty acids instead of glucose when glucose is low. So it might really give you a boost.

But Carnitine really only has GI symptoms in excess of 10 grams a day! We don't use anything near that dose at all!
It is really easy to tolerate. It just costs alot of money, like the CoQ-10 does.

I just bought Qunol (ubiquinol) at Costco this week, on a big sale. I've just finished 300mg CoQ-10 I found in my packing box for upNorth! I bought this last summer at SAMs club. I am just starting to see some effects (less need for naps for example) after 60 caps! one a day.

I'll do the Qunol and see if there is any change. I think CoQ-10 is a slow slow response depending on the quality of the product you choose.

Supplements that affect metabolism, work very slowly... you have to be observant to really feel them sometimes.

Archer

03-28-2012, 04:38 PM

I have recently joined this forum, thanks so much for your info Mrs. D. I have been researching supplements that help in methyl conversion that may assist in regeneration of nerves damaged by idiopathic polyneuropathy in my feet. Especially interested in your opinion of TMG, DMG and a supplement called Phosphatidylserine. Also have found warming my feet while taking a sublingual B-12 5mg seems to help speed the nerve recovery, which is still very slow, but is progerssing. Would heating pads and tens units help my feet with more circulation of these supplements? How about L Arginine Gel? Should I be walking for an hour a day like I used to before this affliction hit me, or would the walking make it worse. I am using all the supplements to rebuild mitochondria, (CO Q10. Benfotiamine, Biotin, ALA, Acetyl-L-Carnitine, Magnesium. Any suggestions you could provide to speed up my foot polyneuropathy reversal would really be appreciated. BTW, my neurologist said my condition was irreversible, and likely progress to more pain as I age. I'm 60 years old. I am taking 600 mg of gabapentin per day, down from the 1500 mg I was taking several months ago. Thanks much for all your help.

mrsD

03-28-2012, 04:52 PM

Welcome to NeuroTalk:

If you use heat TOO much...you may make the nerves hurt more.
Some is good... too much is not good.

Have you had testing for MGUS or other Ig proteins? This may make your circulation slower.

Do you smoke? This can reduce circulation to the legs and feet.

You could try the arginine gel. It may help. But I would encourage you to find some more answers eventually.

Idiopathic PN

03-28-2012, 05:00 PM

Archer

03-28-2012, 05:09 PM

Thanks much Mrs D. I do not smoke, I have been tested for protein via electrophoresis, all is well there. No test for Ig protein that I can see on my labs.

Would walking help my foot neuropathy?
Thanks much.

mrsD

03-28-2012, 05:10 PM

You could.... start at 250mg twice a day.

This is because acetyl carnitine is not absorbed well, so divided doses give you MORE.

It is a fine point, but if you do well on less, then that is something you need to know.

glenntaj

03-29-2012, 05:45 AM

--a serum and urine electrophoresis is the immunoglobulin test; it should also be done with an enumeration of IgA, IgG, and IgM and a test for cryoglobulins.

mrsD

03-29-2012, 06:59 AM

@ Archer.... have you tried soaking your feet in epsom salts --with warm (not hot) water?

This can open up the circulation faster than oral supplements for some people. When the circulation is poor, blood is not getting to the feet, and whatever supplement you are using is just not
getting in. Once you "get ahead" of the problem, it will become easier. You may be able to drop the soaks, as the magnesium does it job orally more efficiently.

I found an interesting PDF the other day on epsom salts, --more details on how to do them:
http://neurotalk.psychcentral.com/post864114-32.html

Idiopathic PN

03-30-2012, 07:50 AM

As far as your R-lipoic goes.... you should be able to take 100mg a day. If you have side effects, you can do it every other day.
But if you just make sure you have a snack in the morning and one before dinner, and one before bedtime, say a small snack.
Some cheese, 1/2 of a protein bar (there are new ones available from Nature Valley now in most stores), or some other protein thing, like Kefir or yogurt, you won't get low. Watch your sugar intake and you'll be less likely to get low. The new Chobani yogurt is quite high in protein for example. You got low on the glucose drink and regular food is much different.

Benfotiamine is safe by all accounts in the studies. I wouldn't worry about it. Same with the acetyl Carnitine. The biggest issue for most, is the cost. You should feel more energy on them all, and have more stamina. I have seen carnitine papers for both hypo and hyper thyroid states so I wouldn't worry about it either.
500mg a day is a good start for the carnitine.

Dear Mrs. D,
I am sorry if my question may not be related to neuropathy. But I dont know where else to pose this question.

As you may know I dont have my thyroid gland anymore. I was told that if one has had a total thyroidectomy, the dosage of the Synthroid should be at least at the minimum of .100mcg. However, in my case, when I have .100mcg, my TSH would be so low. In fact, my doctor has been trying to find the right dosage for me. Currently I am on .75mcg for 6 days and .35mcg. for 1 day. My test for thyroid antibodies is normal. I am wondering why my body requires only a low dosage of thyroid hormone when I dont have my gland. Could there be any other issue/s that my doctor might have missed that may have effect on my neuropathy?

Thank you so much for your patience.

mrsD

03-30-2012, 08:27 AM

There can be thyroid tissue in other parts of the body.

http://www.ncbi.nlm.nih.gov/pubmed/15744160

and this:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3197173/

This tissue could be active and responding to pituitary signals.

Idiopathic PN

03-31-2012, 05:39 AM

mrsD

03-31-2012, 08:15 AM

I believe that our nerves need as much help as possible from the supplements. I am taking a lot of supplements, based on the lists I found on this thread. But, I am concerned about the effects of these supplements to our kidney and liver.

What is your advise to protect our liver and kidney? Has there been any one who posted about stressing kidney or liver?

Thank you very much.

The only supplement I believe you need to watch is magnesium.
Magnesium does NOT cause kidney problems but if you have those already, the elimination will be slowed for magnesium.

CoQ-10 has been suggested for kidney failure in fact.

Lipoic acid has been shown to be not a factor for people with reduced kidney functions:
http://www.ncbi.nlm.nih.gov/pubmed/15703366
Appears to be tolerated well.

Carnitine has been suggested for people with low kidney functions because the kidney is where this is made for the body in fact. So carnitine may be low in patients with kidney damage.

The water soluble vitamins, B's and C predominately, are excreted by the kidney but I have not seen any papers showing they cause kidney disease.

Supplements basically do not hold toxicity for the liver, because they are used as such by the body for all the various tasks needed. They are not drugs.

Some minerals in high dose, like chromium, etc may become toxic when misused. Here is a general article about toxicity:
http://medical-dictionary.thefreedictionary.com/Mineral+Toxicity

At the levels we use here on this forum, effects on liver and kidney are basically not a serious issue. Only for those who already have severe kidney damage, do clearance rates become important to attend to.

However, some drugs used to treat PN may be toxic....
Cymbalta for one can damage the liver severely..and there have been deaths from this. This drug is too new to appear on
this list. But Cymbalta now has a warning about liver damage:
http://www.rxlist.com/cymbalta-drug.htm

Alcohol may affect the liver. This is very common.
Here is a listing of drugs that can damage the liver:
http://www.hepcnet.net/drugsandliverdamage.html
Notice Tylenol (acetaminophen) and aspirin are listed.

Vit A (retinol) and in high doses only that has potential.
Also high dose nicotinic acid (Niacin)--which is used for lipid control as a drug.

Anyone who takes lots of supplements should be evaluated at least yearly in a check up with blood chemistries, just to be sure both the liver and kidneys are working properly. This is a good idea for everyone, to have a good chemistry screening with the annual check up regardless of supplement use.

Idiopathic PN

03-31-2012, 02:13 PM

The only supplement I believe you need to watch is magnesium.
Magnesium does NOT cause kidney problems but if you have those already, the elimination will be slowed for magnesium.

CoQ-10 has been suggested for kidney failure in fact.

Lipoic acid has been shown to be not a factor for people with reduced kidney functions:
http://www.ncbi.nlm.nih.gov/pubmed/15703366
Appears to be tolerated well.

Carnitine has been suggested for people with low kidney functions because the kidney is where this is made for the body in fact. So carnitine may be low in patients with kidney damage.

The water soluble vitamins, B's and C predominately, are excreted by the kidney but I have not seen any papers showing they cause kidney disease.

Supplements basically do not hold toxicity for the liver, because they are used as such by the body for all the various tasks needed. They are not drugs.

Some minerals in high dose, like chromium, etc may become toxic when misused. Here is a general article about toxicity:
http://medical-dictionary.thefreedictionary.com/Mineral+Toxicity

At the levels we use here on this forum, effects on liver and kidney are basically not a serious issue. Only for those who already have severe kidney damage, do clearance rates become important to attend to.

However, some drugs used to treat PN may be toxic....
Cymbalta for one can damage the liver severely..and there have been deaths from this. This drug is too new to appear on
this list. But Cymbalta now has a warning about liver damage:
http://www.rxlist.com/cymbalta-drug.htm

Alcohol may affect the liver. This is very common.
Here is a listing of drugs that can damage the liver:
http://www.hepcnet.net/drugsandliverdamage.html
Notice Tylenol (acetaminophen) and aspirin are listed.

Vit A (retinol) and in high doses only that has potential.
Also high dose nicotinic acid (Niacin)--which is used for lipid control as a drug.

Anyone who takes lots of supplements should be evaluated at least yearly in a check up with blood chemistries, just to be sure both the liver and kidneys are working properly. This is a good idea for everyone, to have a good chemistry screening with the annual check up regardless of supplement use.

As always, thank you very much for your comprehensive reply. I could not thank you enough for all your valuable feedback. I am grateful.

When you said in one of your posts to check on my kidney - well, I did - and I was told that it was normal. I forgot to have my liver function test. But I had it last May 2011 and was normal. Thank God!

mrsD

03-31-2012, 02:15 PM

As always, thank you very much for your comprehensive reply. I could not thank you enough for all your valuable feedback. I am grateful.

When you said in one of your posts to check on my kidney - well, I did - and I was told that it was normal. I forgot to have my liver function test. But I had it last May 2011 and was normal. Thank God!

So you are all set to go! ;)

Idiopathic PN

03-31-2012, 02:47 PM

So you are all set to go! ;)

Yes, Mrs. D. In fact, I am taking now all (or should I say) most of your recommended supplements.

I have always been taking Vit E, C, Calcium, Omega 3,6,9 and Multivitamin.

I started last February the VitB12 (methyl) after reading your supplements thread. Then, I started taking the Co-Q10. Last week, I started on Benfotiamine. I could not start the R-Lipoic earlier than I would have wanted because of my thyroid function. But yesterday, I ordered online the R-Lipoic and and Acetyl L-Carnitine.

I am also soaking my feet in warm water with magnesium at night.

I stopped the Selenium and Glucosamine.

Btw Mrs.D, my wounds from the skin biopsy are healing well. I did not take antibiotic. I just clean the surrounding areas with alcohol.
As of last week, my TSH is still high. So, my Synthroid has been adjusted to .75mcg for 6 days and .35mcg on Sunday. Oh well, I am reporting to you my update. I feel confident knowing you and this community are around to help us in going through this journey of making life more tolerable and feeling hopeful.

Are you sure you are not a doctor?!? :wink:

Nervous

03-31-2012, 03:32 PM

^^mrsD is better than a doctor. Who ever gets a straight answer from a doctor? :winky:

Idiopathic PN

04-01-2012, 04:24 PM

^^mrsD is better than a doctor. Who ever gets a straight answer from a doctor? :winky:

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.

Archer

04-05-2012, 04:47 PM

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

mrsD

04-30-2012, 12:01 PM

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.

Idiopathic PN

05-19-2012, 04:15 PM

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:

mrsD

05-19-2012, 04:38 PM

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/B000NRVWZC/ref=oh_details_o03_s00_i04

Click on this link and use this one. It is available for free shipping on orders $25 and over.

mrsD

05-28-2012, 01:53 PM

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
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:

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.

BobL

06-01-2012, 03:02 PM

mrsD

06-01-2012, 03:35 PM

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.

mrsD

06-01-2012, 03:47 PM

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.

Dr. Smith

06-01-2012, 05:59 PM

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? :Hum:

Doc

glenntaj

06-02-2012, 06:28 AM

--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.)

mrsD

06-02-2012, 08:24 AM

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.

mrsD

06-02-2012, 09:28 AM

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.

Nervous

06-02-2012, 10:33 AM

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?

mrsD

06-02-2012, 11:37 AM

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-supplements/ingredientmono-313-BIOTIN.aspx?activeIngredientId=313&activeIngredientName=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.

Nervous

06-02-2012, 11:42 AM

mrsD

06-02-2012, 11:49 AM

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.

mrsD

06-03-2012, 11:09 AM

^^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.

ginnie

06-03-2012, 11:21 AM

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

mrsD

06-03-2012, 11:39 AM

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.

BobL

06-03-2012, 12:03 PM

ginnie

06-03-2012, 12:07 PM

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

ginnie

06-03-2012, 12:16 PM

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

mrsD

06-03-2012, 12:24 PM

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.

ginnie

06-03-2012, 12:49 PM

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:

Sallysblooms

06-03-2012, 02:42 PM

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.

ginnie

06-03-2012, 03:13 PM

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

Sallysblooms

06-03-2012, 03:24 PM

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

ginnie

06-03-2012, 03:29 PM

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

Nervous

06-03-2012, 11:45 PM

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?

mrsD

06-04-2012, 01:44 AM

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.

Idiopathic PN

06-04-2012, 07:55 AM

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:
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.

mrsD

06-04-2012, 08:04 AM

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

http://www.mountainmistbotanicals.com/info/VitaminC_Interactions_Interference.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:
Previous reports that megadoses of vitamin C destroy vitamin B12 have not been supported (46) and may have been an artifact of the assay used to measure vitamin B12 levels (6).

from http://lpi.oregonstate.edu/infocenter/vitamins/vitaminB12/

Nervous

06-04-2012, 10:15 AM

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?

mrsD

06-04-2012, 10:33 AM

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.

Nervous

06-04-2012, 10:39 AM

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!

mrsD

06-05-2012, 12:35 AM

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!

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.

Nervous

06-05-2012, 12:44 AM

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

Thanks!

mrsD

06-05-2012, 06:19 AM

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.

ger715

06-06-2012, 10:53 AM

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

BobL

06-06-2012, 11:51 AM

MrsD,

Thank you for your suggestions. Responding in order:

1. I had my second visit with my neurologist yesterday. He had previously run a very extensive battery of blood tests, and he went over the results in detail. I am normal on everything and there must have been a hundred or so factors tested. B vitamins are fine also. His best guess is that since I had borderline diabetic blood sugar levels six months ago, that is the likely culprit. I have been dieting and exercising since the first of the year and am now down more than 40 lbs. and 60 on the blood sugar count. That plus Neurontin (you folks in this support group tend to call it gabopentin, I believe that's the generic name) seem to be offering me relief. He upped my Neurontin from 3x300 mg/day to 3x600 mg/day. But I am DEFINITELY FEELING RELIEF!

2. I read your link on alcohol and PN and it, like other research I've read, seemed to focus mainly on alcoholics, not just regular social drinkers. It also mentioned the poor diet that may be associated with alcoholism, and the resulting impact on blood chemistry. Since I am getting relief as noted above, my blood work is all spot-on, and I enjoy my couple of shots of alcohol nightly, I don't plan to quit or curtail it at this time.

3. My neurologist was fairly neutral on the subject of Benfotiamine but was not opposed to trying it. It's a lot more affordable that the Neuropathy Support Formula that I initially asked you about, and doesn't have the huckster marketing that the NSF product has. I've ordered two months' worth and was pleased to see that it can be had in bulk for under $100/year. I'll hold off on the lipoic acid and Biotin for now, but might try adding them in later.

I will advise how all of the above works!

BobL

mrsD

06-06-2012, 12:30 PM

I know I sound like a pest... but you really need the actual B12 numerical result. Do not accept "normal" because in US the lab ranges are out of date and report lows as normal which the doctors then tell their patients. So therefore a level of 250 will be not flagged in US, however it is a seriously low level biologically.

You need to be at least at 400 US units. This level now appears in medical websites targeting doctors, for continuing ed.

Alcohol metabolism results in formation of by products which in some people are toxic. These are primarily aldehydes. So you don't have to be a heavy abuser (which often has poor diet associated), to have reactions. This is why the benfotiamine is useful for those drinkers. There are also congeners in it which people may react to.

http://banderasnews.com/0506/rr-congeners.htm

Also chronic alcohol use (doesn't have to be heavy) will have that diuretic effect and therefore cause losses in magnesium.
So taking a good magnesium supplement or eating foods rich in it may help. Poor magnesium levels are implicated in PN symptoms (nerve malfunction) in some people, and are very bad for health because about 300 systems use it as a cofactor. Estimates are that about 70% Americans are low in this vital mineral. Do not accept magnesium OXIDE however, as it is not absorbed, and is basically a laxative.

Idiopathic PN

06-06-2012, 07:35 PM

So taking a good magnesium supplement or eating foods rich in it may help. Poor magnesium levels are implicated in PN symptoms (nerve malfunction) in some people, and are very bad for health because about 300 systems use it as a cofactor. Estimates are that about 70% Americans are low in this vital mineral. Do not accept magnesium OXIDE however, as it is not absorbed, and is basically a laxative.

I am still soaking my feet in warm water with epsom salt every night. Then, I rub my feet and legs with epsom lotion after soaking.

I also rub my neck down to chest (I think that my shortness of breath maybe caused by some tight chest muscles - this is pure guess on my part). I rub my hands with epsom lotion as well.

With all the soaking and rubbing, do you think it might just be better if I take magnesium supplement? As you know, I have been taking so much supplements, I dont want to stress so much my kidney and liver, that is why I was avoiding taking another supplement, but if it is better taking it orally, i might have to reconsider.

Thank you.:hug:

Idiopathic PN

06-06-2012, 07:41 PM

BobL,

With 1800 mg/day, dont you feel any side effects like sleepiness, brain fog, memory lapses, etc?

I am on 1200mg/day and it makes me very sleepy. With this dosage, it gives me a 2-3 hours pain free on some days, but on some days, it does not effect at all.

It is good that its working for you very well.

[QUOTE=BobL;88655
That plus Neurontin (you folks in this support group tend to call it gabopentin, I believe that's the generic name) seem to be offering me relief. He upped my Neurontin from 3x300 mg/day to 3x600 mg/day. But I am DEFINITELY FEELING RELIEF!

BobL[/QUOTE]

ger715

06-06-2012, 07:49 PM

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

Mrs. D,
I had listed the supplements I had been taking so you would have additional information when asking whether you had any thoughts or ideas about causes for the groin and leg pain that started a few weeks ago.

It is happening every few days. This is new and not sure what may have started this painful ache. Hard to describe; possible muscle pain? Like I mentioned previously, this is from the groin down the whole leg; especially the back of the legs; but right and left groin areas as well. It has made walking, at times very difficult and getting quite concerned. I have not added any new prescriptions or supplements.

I would really appreciate what, if any, suggestions or thoughts you may have.

Gerry

mrsD

06-07-2012, 01:26 AM

Mrs. D,
I had listed the supplements I had been taking so you would have additional information when asking whether you had any thoughts or ideas about causes for the groin and leg pain that started a few weeks ago.

It is happening every few days. This is new and not sure what may have started this painful ache. Hard to describe; possible muscle pain? Like I mentioned previously, this is from the groin down the whole leg; especially the back of the legs; but right and left groin areas as well. It has made walking, at times very difficult and getting quite concerned. I have not added any new prescriptions or supplements.

I would really appreciate what, if any, suggestions or thoughts you may have.

Gerry

I think groin pain is possibly hip pain. If it is in the back it can be also sciatic pain or sacral arthritis. If you have a lower back issue, you will also feel pain down the backs of the thighs.

When I fell several years ago, I damaged a tendon in the thigh, called the adductor. This tendon attaches to the bottom of the pelvis. And let me tell you...when that tendon flamed up I was unable to walk, lift my leg, roll over in bed, and the only pain relief I had was aspirin! I couldn't even dress myself! Aleve didn't work. It hurt sitting, walking standing lying down...everywhere!

I still get minor aches there which I use my magnets for. And I had to do 3 months of PT for it.

Here is a link with illustrations. Hip pain is complex and can also be due to bursitis:

http://www.aafp.org/afp/2000/0401/p2109.html

Pain in the groin can also be meralgia, but that is typically down the front of the thigh only. Not in the back of the thigh.

If your pain continues, you'll have to see a doctor, for this, I think.

If you can take aspirin, try some AlkaSeltzer original formula.
If it works then it points to an inflammatory cause.
Just sitting on high stools, or "director's chairs" can put a strain on the lower back for some people. So you might not even think of that as a trigger etc. And you can herniate a disc anytime!

BobL

06-07-2012, 08:59 AM

BobL,

With 1800 mg/day, dont you feel any side effects like sleepiness, brain fog, memory lapses, etc?

I am on 1200mg/day and it makes me very sleepy. With this dosage, it gives me a 2-3 hours pain free on some days, but on some days, it does not effect at all.

It is good that its working for you very well.

I have just started ramping up from 900 mg to 1800 mg so I can't comment on the higher dosage but over a month at the lower dosage did not bother me at all.

Idiopathic PN

06-07-2012, 09:33 AM

I have just started ramping up from 900 mg to 1800 mg so I can't comment on the higher dosage but over a month at the lower dosage did not bother me at all.

Thank you for the reply.
I hope you could post sometime in the future, if the dosage continues to work for you and the side effects, if any.

Keep well.

mrsD

06-07-2012, 09:49 AM

I would like to please remind some posters here that this is a
thread about supplements. Please try to stay on topic.

We do have a thread to discuss the MEDICATIONS used to help with PN symptoms.

This is the link to it.
http://neurotalk.psychcentral.com/thread161040.html

I am bumping it up today to page one, here, so it will be easier to find. ;)

ger715

06-07-2012, 10:00 AM

Mrs. D.
In November, it will be 6 years I had lumbar spine fusion/laminectomy. Also doctor said nerve was badly crushed (said he never had seen such a red angry nerve like this before).

Eventually went on narcotics for pain which caused terrible constipatation (take daily laxatives) leading to my bladder coming down (Cystocele surgery; bladder in Mesh Sling), following year, small bowel came down (Rectocele Surgery). After bladder surgery the PN pain really got even worse and developed edema as venuous stasis; feet, legs and ankles.

This groin pain, along with leg pain (do have in front as well as back of legs) just seems more prominent back of the legs and behind the knee cap area. As I mentioned this has made walking even more difficult. Since I have had pain from the waist down to the toes, this pain is something new and different from what I have been dealing with all along. I had the siatica pain before fusion and this does not feel the like that.

I will look up more info on bursitis of the groin. Do you think this would affect the legs making walking even more difficult? This is both legs and both side groin pain.

I did see Pain Specialist's assistant about a week ago and mentioned this pain. She thought it might be muscle pain. I do take vallium, along with narcotic meds. She thought I should try increasing the vallium since this is not only for anxiety; but for muscle pain as well. I already take two 5mg's vallium a day. Have added an extra half; much more makes me too groggy. The bursitis sounds like a possible.

Thanks,

Gerry

susana1027

08-21-2012, 02:44 AM

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.

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.

I,too, have hypothyroidism and I have been taking the Nerve Support Formula. I've been having symptoms of my thyroid being low and was on the verge of calling my doctor when I just happened across some important information. That Support Formula has R-Alpha Lipoic Acid in it. R-Alpha Lipoic is often used to help Peripheral Neuropathy. But - it also lessens your body's ability to convert T-4 to T-3. My doctor knows that I'm taking that formula but didn't warn me about the consequences to my thyroid levels. The information I've found says that I can continue taking the formula but my doctor needs to adjust my thyroid medication. I'll be calling my doctor this morning about this.

Plus, as you probably know, low thyroid levels can cause peripheral neuropathy. So keep a close eye on your thyroid levels.

The formula has helped me in a limited way but not a great deal. But perhaps the effect on my thyroid levels has caused that limitation. So I plan to get my medication adjusted and continue the formula for a while longer to see what happens.

mxmxmxmxmxmx

08-21-2012, 10:42 PM

I was wondering what you think of Phosphatidyl Complex. I saw it in one of those combination nerve support supplements and also a few posts on brain health. The blurb about it on the supplement page said "Phosphatidyl Complex contains lipids that comprise 76% of the myelin sheath" which I found interesting. Have you researched this supplement?

Also, I'm curious if any enzymes like bromelain have any effect. Thanks!

mrsD

08-27-2012, 04:42 AM

To the best of my knowledge, there is only a study on animals showing ALA...mixed version of lipoic acid... had an effect on T4 conversion.

R-lipoic does not appear yet in studies in humans demonstrating this effect.

People with thyroid issues, may just need adjustments periodically.
Low zinc and selenium are also factors in the enzymes that convert T4 to T3 in tissues. You can get low in zinc if you take acid blocking drugs, or ACE inhibitors for blood pressure.

Since ALA has been used for over a decade in Europe, human studies have not been done or anecdotal papers have not appeared in regards to humans having this effect with the supplement.

What lipoic acid may do however, is lower biotin utilization because it shares a cofactor transporter in the body. So chronic use of lipoic may need biotin to be added daily...preferably taken at a different time of day.

I,too, have hypothyroidism and I have been taking the Nerve Support Formula. I've been having symptoms of my thyroid being low and was on the verge of calling my doctor when I just happened across some important information. That Support Formula has R-Alpha Lipoic Acid in it. R-Alpha Lipoic is often used to help Peripheral Neuropathy. But - it also lessens your body's ability to convert T-4 to T-3. My doctor knows that I'm taking that formula but didn't warn me about the consequences to my thyroid levels. The information I've found says that I can continue taking the formula but my doctor needs to adjust my thyroid medication. I'll be calling my doctor this morning about this.

Plus, as you probably know, low thyroid levels can cause peripheral neuropathy. So keep a close eye on your thyroid levels.

The formula has helped me in a limited way but not a great deal. But perhaps the effect on my thyroid levels has caused that limitation. So I plan to get my medication adjusted and continue the formula for a while longer to see what happens.