21 replies to this topic

[beff51]

Hello   im new here and have just started following along,   would like to know if anyone has info on peripheral neuropathy.  what types of stacks, supplements or anything else could help ? I am taking gabapentin daily but it seems to be getting worse and i want to try to keep ahead of this if i can.

 

 

[YOLF]

Moved to Supplements. Best of luck. 

Edited by cryonicsculture, 18 July 2014 - 01:19 AM.

[niner]

Is this diabetic neuropathy, or something else? Have you been seen a doctor about it? Are you taking anything besides gabapentin?

[timar]

The answers to niner's questions would be critically important for giving precise recommendations.

 

In any case you want to make sure that your vitamin D level is between 40 and 60 ng/ml, as an optimal vitamin D status is critical for nerve repair and myelination. Get your level tested ASAP and supplement accordingly.

 

Anyone* suffering from neuropathy should take a B-complex supplement. Choose one that provides 10-50 mg of B6, at least 50 mcg of B12 and a maximum of 400 mcg folic acid, preferably folate (or instead choose a multivitamin that provides high levels of B vitamins, like the LEF Two-per-Day). Take an additional daily high-dose (0.5-1 mg) B12 longzene, providing methylcobalamin, for two or three months (just get a bottle and use it up).

 

*except if you have taken supplements containing high doses (>50 mg) of B6 and developed neuropathy thereafter, in which case you have to immediately cease all B6 supplementation - sola dosis facit venenum...

Edited by timar, 18 July 2014 - 09:52 AM.

[airplanepeanuts]

Anyone* suffering from neuropathy should take a B-complex supplement. Choose one that provides 10-50 mg of B6, at least 50 mcg of B12 and a maximum of 400 mcg folic acid, preferably folate (or instead choose a multivitamin that provides high levels of B vitamins, like the LEF Two-per-Day). Take an additional daily high-dose (0.5-1 mg) B12 longzene, providing methylcobalamin, for two or three months (just get a bottle and use it up).

Is there a reason to supplement B12 AND sublingual Methyl-B12?

[timar]

If the neuropathy is caused directly or indirectly by a B12 deficiency, a B-complex supplement will take too long to reverse that deficiency state. Longzenes containing methylcobalamin provide a better absorption independent from the intrinsic factor (which may be lacking) by facilitating passive absorption of the vitamin through the oral mucosa. Once B12 stores have been replenished a daily dose of 50-100 mcg should be enough to avoid becoming deficient again, even for those lacking the intrinsic factor required for active absorption.

[Dolph]

There is no convincing evidence that sublingual B12 is absorbed more efficiently than oral preparations, despite the claims of the manufacturers and some internet "experts".
If someone has a B12 deficiency severe enough to cause demyelination (highly unlikely in this context here btw.) suggesting a sublingual supplement would be clearly a case of malpractice. Aggressive, high dose parenteral application in this case clearly would be the way to go.

Edited by Dolph, 18 July 2014 - 01:14 PM.

[Dolph]

Once B12 stores have been replenished a daily dose of 50-100 mcg should be enough to avoid becoming deficient again, even for those lacking the intrinsic factor required for active absorption.

This is definetely wrong, too, by the way.

[timar]

Well, this is of course not a medical advice. I expected that the OP receives medical care as he already takes a prescription drug and every physician is his right mind would have made sure that there is no overt deficiency - as diagnosed by serum or urinary methylmalonic acid levels - that needs to be treated by B12 shots (@beff51: do you know whether he or she has done such a test?) However, it is debatable whether this test is sufficient to diagnose more subtle forms of functional B12 deficiency that may occur due to mutations in an cobalamin-dependent enzyme, lowering its coenzyme binding affinity (this is why I wrote "directly or indirectly"). Such mutations are quite common and are often the reason why people experience symptoms resembling typical deficency symptoms (i.e. high homocysteine) while being "safely" within the reference range for the micronutrient substrate to the coenzyme or not showing markers of deficiency depending on non-affected enzymes (i.e. methylmalonic acid). Obviously, if the OP receives B12 shots he can skip the lozenges*. If not, I see no reason not to give them a try, as they are cheap and completely nontoxic.

 

*if someone wondered what I meant by longzene: yes, I have a knack for funny misspellings

 

There is no convincing evidence that sublingual B12 is absorbed more efficiently than oral preparations, despite the claims of the manufacturers and some internet "experts".

 

Yes there is. This is why B12 lozenges are routinely used in medical practice in Sweden as an alternative to injections since 1964. However, I agree that in severe deficiency states injections should be prefered. But this is not what my advice was about, obviously.

 

Once B12 stores have been replenished a daily dose of 50-100 mcg should be enough to avoid becoming deficient again, even for those lacking the intrinsic factor required for active absorption.

This is definetely wrong, too, by the way.

 

Because... you say so? There is plenty of evidence that ~1% of an oral dose is absorbed intestinally by passive diffusion (e.g. completely independent from intrinsic factor). That would be 1 mcg for a 100 mcg dose, which is above the actual requirement since the EAR is already corrected for absorption (50%). However, most poeple produce at least some intrinsic factor and eat some foods naturally providing B12, so 50 mcg may be sufficient for most poeple.

 

Edited by timar, 18 July 2014 - 03:50 PM.

[Dolph]

There is no convincing evidence that sublingual B12 is absorbed more efficiently than oral preparations, despite the claims of the manufacturers and some internet "experts".

 
Yes there is. This is why B12 longzenes are routinely used in medical practice in Sweden as an alternative to injections since 1964. However, I agree that in severe deficiency states injections should be prefered. But this is not what my advice was about.

I don't know what you want to prove with this link, but it's just about oral(!) treatment and got nothing to do with sublingual application.
 
 

Because... you say so? There is plenty of evidence that ~1% of an oral dose is absorbed intestinally by passive diffusion (e.g. completely independent from intrinsic factor). That would be 1 mcg for a 100 mcg dose, which is above the actual requirement since the EAR is already corrected for absorption (50%). However, most poeple produce at least some intrinsic factor and eat some foods naturally providing B12, so 50 mcg may be sufficient for most poeple.

No, not because I say so, but because you are ignoring the fact that the amount of B12 absorbed is NOT equal to the amount retained. ;-)
This is very confusing but B12 has several independent biological half-lifes. Once it's stored in the liver it's ~12 months. In the serum it's ~5-6 days. But of this circulating amount of B12 only a small part gets incorporated in the liver. This is mindboggling ineffective for whatever reason.
You can keep many patients at a "survival" level with 1000, maybe even with 500mcg, but definetely not with 100 let alone 50mcg.

This is getting offtopic by they way. Whatever the OPs problem might be, the chance it's a B12 defficiency is miniscule given his symptoms.

Argh, damn formatting...

Edited by Dolph, 18 July 2014 - 04:03 PM.

[timar]

I don't know what you want to prove with this link, but it's just about oral(!) treatment and got nothing to do with sublingual application.

 

I wasn't specifically refering to sublingual application. I just mentioned long... *ehem*, lozenges because that's what is generally available as an high-dose B12 supplement. I guess it makes some sense to have lozenges because passive diffusion may additionally occur through the oral mucosa, but I agree that there is little evidence to support that hypothesis. But there is certainly no downside to lozenges. It's not exactly something fancy or expensive...
 

No, not because I say so, but because you are ignoring the fact that the amount of B12 absorbed is NOT equal to the amount retained. ;-)
This is very confusing but B12 has several independent biological half-lifes. Once it's stored in the liver it's ~12 months. In the serum it's ~5-6 days. But of this circulating amount of B12 only a small part gets incorporated in the liver. This is mindboggling ineffective for whatever reason.
You can keep many patients at a "survival" level with 1000, maybe even with 500mcg, but definetely not with 100 let alone 50mcg.

 

I don't understand your line of reasoning here. The estimated avarage requirement (EAR) for B12 is 2 mcg, which is twice the actual biochemical requirement after absorption into the blood stream. Once B12 stores in the liver are replenished, 100 mcg should provide at least that sufficient 1 mcg, even when there is no intrinsic factor at al. Or are you suggesting that people lacking intrinsic factor are also much less efficient in storing B12 in the liver?
 

This is getting offtopic by they way. Whatever the OPs problem might be, the chance it's a B12 defficiency is miniscule given his symptoms.

 

 

I agree. But I never meant to suggest that it is a full-blown B12 deficiency which would be subject to medical care and not to self-administered supplements, anyway. As I have explained, there are functional deficency states, often quite subtle and evading medical diagnosis that sometimes respond to high-dose supplementation. If there is even a tiny chance that a supplement may help to ameliorate a potentially debilitating condition and the risk is next to nil and it is availably cheaply, I see no reason not to give it a try. After all, this is what actually discerns the supplemental from the pharmacological approach. You don't need compelling evidence and clear-cut causality: if there is a chance that it may help (and be it only due to the placebo effect), and it is reasonably safe and cheap, you give it a shot. So I don't really see the point of your criticism. The OP did not ask for approved medical care, he probably already receives that. He asked for additional advice regarding supplements, which I gave. Nothing more, nothing less.

 

Maybe you have better advice for the OP. That would be great. But so far your only contribution to this topic has been to criticize the advice I have given by holding it to unreasonably high standards.

Edited by timar, 18 July 2014 - 07:40 PM.

[david ellis]

"The discovery could explain why the drugs gabapentin and pregabalin work to treat some nervous system problems, including epilepsy and neuropathic pain. α2δ-1 is the receptor for gabapentin and pregablin; this research suggests that the drugs work, at least in part, by blocking the formation of new excitatory synapses."

 

 

I experienced no healing.   Gabapentin does reduce pain.  If your neuropathy is caused by foot pad atrophy I have worked out stuff that has reduced my neuropathy.

 

 

 

[timar]

I guess I have been too defensive in my response to Dolph. The beneficial effects of high-dose methylcobalamin in neuropathy I had in mind may or may not be due to a functional B12 deficiency in neuropathy:

 

http://www.ncbi.nlm....pubmed/15466926

http://www.ncbi.nlm....pubmed/16008162

http://www.ncbi.nlm....pubmed/19212856

http://www.ncbi.nlm....pubmed/21206429

http://www.ncbi.nlm....pubmed/21421801

http://www.ncbi.nlm....pubmed/21769070

http://www.ncbi.nlm....pubmed/23181238

http://www.ncbi.nlm....pubmed/23651730

http://www.ncbi.nlm....pubmed/24455309

http://www.ncbi.nlm....pubmed/24753654

 

 

Given the results from those studies, I think the chances that my advice to take a B-complex supplement plus additional high-dose B12 may help the OP with his neuropathy are actually more than "minuscle"...

Edited by timar, 18 July 2014 - 09:41 PM.

[YOLF]

There is no convincing evidence that sublingual B12 is absorbed more efficiently than oral preparations, despite the claims of the manufacturers and some internet "experts".
If someone has a B12 deficiency severe enough to cause demyelination (highly unlikely in this context here btw.) suggesting a sublingual supplement would be clearly a case of malpractice. Aggressive, high dose parenteral application in this case clearly would be the way to go.

This next one is actually by Timar... must be bug.

I guess I have been too defensive in my response to Dolph. The beneficial effects of high-dose methylcobalamin in neuropathy I had in mind may or may not be due to a functional B12 deficiency in neuropathy:

 

http://www.ncbi.nlm....pubmed/15466926

http://www.ncbi.nlm....pubmed/16008162

http://www.ncbi.nlm....pubmed/19212856

http://www.ncbi.nlm....pubmed/21206429

http://www.ncbi.nlm....pubmed/21421801

http://www.ncbi.nlm....pubmed/21769070

http://www.ncbi.nlm....pubmed/23181238

http://www.ncbi.nlm....pubmed/23651730

http://www.ncbi.nlm....pubmed/24455309

http://www.ncbi.nlm....pubmed/24753654

 

 

Given the results from those studies, I think the chances that my advice to take a B-complex supplement plus additional high-dose B12 may help the OP with his neuropathy are actually more than "minuscle"...

 

 

IIRC, what it comes down to is this. Cyanocobalamin has to be converted to methycobalamin (or maybe other active forms which have become available since I read up on this) by the liver to be used in nerve/brain cells. The liver is only able to convert a small amount (something close to the RDA, or around 30% more in women due to child bearing capacities). Cyanocobalamin is good for replenishing the liver's store of B12 as it doesn't store methylcobalamin, but the liver can store enough to last something like 3 months IIRC.

 

Where there are B12 deficiencies, there are also often problems with folate/folic acid which can block the receptor (I can't remember the exact details, though I read up on it around the time the Patton Protocol was being announced). In this case, you actually need to remove folate/folic acid from the diet before you can readily absorb the B12 again at which point you could resume folate/folic acid supplementation. 

 

Methylcobalamin should also be made in sufficient quantity for a health person by populations of various lactobacillus strains (IIRC) including the ever popular Acidophilus which is marketed for seemingly everything but it's capacity to produce B12. In any case, anyone with a B12 problem should take a probiotic complex containing the methylcobalamin producing bacteria.

 

Now for the beating of the dead horse:

I once read a study (from Harvard IIRC) done on elderly people where folic acid was found to cause brain lesions when administered in doses of 800mcg or more per day. Most elderly people have a reduced capacity to absorb B vitamins, so the amount in younger people could be lower or younger people might have the power of youth to protect them. Either way, caution is advised with the folic acid form of "folate." Supplementing with it can prevent disease in newborns where the mother doesn't eat enough greens, but folic acid isn't the best answer and shouldn't be virtually the only option for supplementation. 

Edited by cryonicsculture, 18 July 2014 - 10:07 PM.

[YOLF]

Oh, and perhaps someone can comment on whether trimethylglicine could improve the condition independently of the potential B12 issues (though the B12 issue still needs to be taken care of).

[timar]

Some interesting animal studies elucidating the effects of methylcobalamin on neurite growth:

 

http://www.ncbi.nlm....pubmed/20045411

http://www.ncbi.nlm....pubmed/20884334

http://www.ncbi.nlm....pubmed/24098787

 

 

IIRC, what it comes down to is this. Cyanocobalamin has to be converted to methycobalamin (or maybe other active forms which have become available since I read up on this) by the liver to be used in nerve/brain cells. The liver is only able to convert a small amount (something close to the RDA, or around 30% more in women due to child bearing capacities). Cyanocobalamin is good for replenishing the liver's store of B12 as it doesn't store methylcobalamin, but the liver can store enough to last something like 3 months IIRC.

 

There are a lot of IRRCs in your post. Some references would help. I have never heard, for example, that the liver is unable to store B12 circulating as methylcobalamin. That wouldn't make much sense because it is a major dietary form of B12 and the main metabolite. Cyanocobalamin, by contrast, is a synthetical form not occuring in nature AFAIK.

 

Where there are B12 deficiencies, there are also often problems with folate/folic acid which can block the receptor (I can't remember the exact details, though I read up on it around the time the Patton Protocol was being announced). In this case, you actually need to remove folate/folic acid from the diet before you can readily absorb the B12 again at which point you could resume folate/folic acid supplementation. 

 

Never heard that too. Which receptor are you refering to? Folate can mask a B12 deficiency, but that doesn't mean that it hinders the absorption of B12. I don't think that there is evidence for such an interaction.

 

Methylcobalamin should also be made in sufficient quantity for a health person by populations of various lactobacillus strains (IIRC) including the ever popular Acidophilus which is marketed for seemingly everything but it's capacity to produce B12. In any case, anyone with a B12 problem should take a probiotic complex containing the methylcobalamin producing bacteria.

 

Yes, but inconveniently you would have to eat your own feces to take advantage of that (like some animal species do for that reason). B12 is absorbed in the small intestine and unless you suffer from severe bacterial overgrowth you won't absorb significant amounts of the B12 produced by bacteria in the large intestine.

 

Oh, and perhaps someone can comment on whether trimethylglicine could improve the condition independently of the potential B12 issues (though the B12 issue still needs to be taken care of).

 

That could be possible, but as opposed to B12, B6 and folate, I haven't seen any published evidence for that.

Edited by timar, 18 July 2014 - 10:37 PM.

[YOLF]

I left the bookmarks behind for those references at least 3 computers and 6 HDDs ago. It would probably take hours for me to find them again. I'll leave it to the interested parties to do the fact checking and the post can be considered as search leads. I could have gotten the storage part wrong, but I'm sure that there was limited convertability with cyanocobalamin and that it's pretty much useless. I've taken it as 5mg sublingual lozenges as both forms, and only the methyl form was noticeably effective on my memory.

 

B12 is only produced by bacteria. So the minute quantities that sustain us must necessarily come from the population that lives inside us or which we get from eating things that it lives in. I'm sure non-supplemental quantities are less than optimal, but it's beneficial to restore the the population so you don't have to rely on supplementation in order to get B12 and not revert to the condition. I don't feel that I said it would help in the short term, rather, I feel that I said it's just a good thing for someone to do in the long term.

 

 

[beff51]

Hi All, WOW thanks for all the info so far. I'm overwhelmed by the depth and breadth if info and levels of expertise . To answer the original question. It is not diabetic neuropathy ,
I'm still trying to figure out the root cause. I do however have an underactive thyroid which I take levothyroxine for 125mcg. Daily. Mostly the symptoms are tingling to painful feelings in the arms and hands, and severe episodes of nerve pain in my back. After having done some of my own research I started taking alpha lipoid acid and a basic b complex with sublingual b-12. Since then the episode have lessened greatly. But I know I've only just stared in the right path. With lots more info to absorb, THANKS to you all for your time I can tell I'm in the right spot
Scott

[beff51]

So after reading all the info here  my next question would be ,  are D, B-12 and the B vitamins the only supplements which could help with the neuropathy. Also what aboutthte considerations of why there could be any  deficiencies at all-- could this be an absorbtion issue?

[niner]

So after reading all the info here  my next question would be ,  are D, B-12 and the B vitamins the only supplements which could help with the neuropathy. Also what aboutthte considerations of why there could be any  deficiencies at all-- could this be an absorbtion issue?

 

 

An absorption problem is possible, as is a genetic abnormality that makes you need an intake that exceeds the usual RDA.  However, if a micronutrient deficiency is really the problem, which may or may not be the case, the most likely culprit would be that you just aren't getting enough of something in your diet.  Maybe there's an infectious agent involved, or some sort of toxin exposure.  Have you seen a neurologist?  I had a mild case of peripheral neuropathy several years ago, and never found a cause.  It resolved on its own, or at least faded to the point of being unnoticeable.  It sounds like your case is worse, though, and getting a medical opinion would probably be good idea.

[adamh]

I have PN symptoms which are relieved by taking large doses of glutamine every day. Google "neuropathy glutamine" without the quotes and you will see a lot of anecdotal as well as scientific evidence. Some doctors recommend it. It may not work for everyone, my case was I have no diabetes and no obvious reason to have it so who knows why it works? It does not cure it entirely but relieves about 75% of the symptoms. I recommend anyone with PN to try glutamine. Buy it in bulk, little capsules are a waste of money, it does not taste bad at all. 20 to 30 gm a day is recommended, I have tapered down to a little less than 20 per day in divided doses. Its also very good for health in general.

[david ellis]

I searched ncbi.nlm.nih.gov for resolvins, protectins and peripheral neuropathy.  I found 18 articles in the last year.    Are we skipping pro-resolving lipids?  Is there a controversy?

 

Why  nobody recommended Beff51  take EPA/DHA (Omega 3 oils) and aspirin to treat peripheral neuropathy?