Neuropathy: What works and what are scams?

Posted by bigjohnscho @bigjohnscho, May 2 6:09am

I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.
What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.

Interested in more discussions like this? Go to the Neuropathy Support Group.

@smutchler

The research shows that all forms of pyroxidine can be neurotoxins, including P5P.

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Just curious, did you watch this video? Is it a bunch of crap? I don't know. Seems to me if some Neurologists haven't even heard of this then maybe there is research and information that they don't know about.

REPLY
@samcal9977zz

I think, generally, we are too quick to label something as "a scam."

Sometimes a supplement or therapy will help to a degree, but not to a degree where we consciously become aware of its effect.

So, for example, everyone knows that eating a healthy salad with a lot of leafy green vegetables is good for us.

But who FEELS the effect of eating that salad? We don't feel the effects, but it clearly is helping us.

So, some therapies or supplements may be giving us improvement at a low level...5% or 10% improvement, but it is not noticeable.

And then, some therapies / supplements may take months to show results.

from Dr. Andrew Weil, an Integrative Medicine, MD...

He seems very wise, grounded, down to earth and reasonable. Will easily advise traditional medicine over natural medicine. Not some fadist...

Neuropathy Symptoms and Treatments
https://www.drweil.com/health-wellness/body-mind-spirit/diabetes/neuropathy-symptoms-and-treatment/
Excerpt:

What neuropathy treatment and natural remedies does Dr. Weil recommend?

Your first step should be a general medical checkup to determine if an underlying disease or injury is the cause of your neuropathy symptoms, and if so, to determine its nature. Your doctor should do complete blood work and may refer you to a neurologist who will probably do an EMG (electromyelogram) to assess muscles and nerve conduction. If you have no underlying disease, you can try one or all of the following neuropathy foot treatment strategies:

Take one B-100 B-complex vitamin daily. The B vitamins are necessary for normal nerve function, and supplementing is a good preventive measure. Do not take more than 200 mg of B-6, as higher daily doses can actually cause symptoms of neuropathy.

Take 100 mg of alpha-lipoic acid daily. This antioxidant protects microcirculation to the nerves. You can gradually increase the dose to 300 mg twice a day over the next month.

Acupuncture can help relieve peripheral neuropathy pain. Additionally, a practitioner of Chinese medicine can provide you with herbs that may speed recovery. You might also try reflexology for neuropathy of the legs, feet and toes. If a toxic exposure is the cause, time is your greatest ally – injured nerves will slowly recover, as long as the exposure has stopped.

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I agree re: acupucture helps..I go every 5 weeks to keep pain levels down in my neupathic -caused pain in mt toes and big toe!

REPLY

To everyone in this discussion:
A friendly reminder about the Community Guidelines (https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/). Please see in particular guidelines 1 and 2 excerpted here:
1. Be careful about giving out medical advice
- Sharing your own experience is fine, but don't tell other members what they should do.

2. Remain respectful at all times.
- Exercise tolerance and respect toward other participants whose views may differ from your own. Disagreements are fine, but mutual respect is a must.
- Personal attacks against members or health care providers are not acceptable. Such posts will be removed.

Be supportive. Be kind.

If anyone has further questions about the guidelines, please contact me using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

With respect to vitamin B6 toxicity, see this reference from the National Institues of Health https://ods.od.nih.gov/factsheets/VitaminB6-Consumer/#:~:text=People%20almost%20never%20get%20too,they%20stop%20taking%20the%20supplements

EXCERPT:
"People almost never get too much vitamin B6 from food or beverages. However, taking high amounts of vitamin B6 from supplements for a year or longer can cause severe nerve damage, leading people to lose control of their bodily movements. The symptoms usually stop when they stop taking the supplements. Other symptoms of too much vitamin B6 include painful, unsightly skin patches, extreme sensitivity to sunlight, nausea, and heartburn.

The daily upper limits for vitamin B6 include intakes from all sources—food, beverages, and supplements—and are listed below. These levels do not apply to people who are taking vitamin B6 for medical reasons under the care of a doctor.

Life Stage Upper Limit
Birth to 12 months Not established
Children 1–3 years 30 mg
Children 4–8 years 40 mg
Children 9–13 years 60 mg
Teens 14–18 years 80 mg
Adults 100 mg
Some experts recommend lower limits for vitamin B6. For example, in 2023 the European Food Safety Authority set an upper limit for vitamin B6 of 12 mg per day for all adults, with lower amounts ranging from 2.2 to 10.7 mg per day for infants and children, depending on age."

REPLY
@samcal9977zz

I have been around Vitamin B supplementation since the 1960s. I never heard of what you are suggesting.

There are endless professional scientific studies indicating the clear benefits of vitamins and other supplements.

The US NIH has recognized a wide range of these things.

If there is some kind of fringe problem with vitamin B6, that is only now being discovered, then we should, by all means, attend to those issues. Of course, there may be professional studies countering the idea that these levels of B6 are dangerous, I don't know. That is the nature of professional studies. There are, frequently, professionals who disagree. I know a bit about it, my ex was a 9 year post doc cancer researcher. Oh, yes, quite true. And yes, I helped her with her grant proposals.

So, while I don't have an MD or a Phd., I do know a few things.

So, for example, you took a supplement and four months later had a medical problem. That does not mean the two things are related. There could have been other, endless causes and the B6 was only coincidental during the period when the actual cause initiated the problems.

Or not. So, I take a Tylenol. Then, I get leg cramps. Did the Tylenol cause the leg cramps? Or were the leg cramps from doing my morning jog, but jogging twice the distance I usually jog?

Dr. Weil is an MD. He went to college. He got excellent grades. He got into medical school and graduated. He is a documented expert and professional. His advice is professional advice from an MD.

Anytime, anywhere, anybody suggests some herb or tea or vitamin can aid health, there is an immediate attack that tries to suggest all such things are nonsense. If you get into the science of it, that, oh....peppermint tea has no benefit, is really like saying that a healthy salad with leafy green vegetables can't possibly be good for you. That is the nonsense, the spin, the scam, the lie.

Of course supplemental nutrients aid health. Now, if you decide to drink 100 ounces of carrot juice daily and have some kind of toxic reaction to high levels of beta-carotene? Sure. If you do anything extreme, it can be dangerous.

I used to do accounting in a funeral home. One of the directors had been a rep for Big Pharma. He told me directly, that he and the other salesmen, used to go out for beers and laugh at how little of a bribe it took, for doctors to prescribe the drugs they wanted.

So, you know...please already, with the idea that every tea bag of chamomile tea is going to end civilization. Anytime big money is involved, there is plenty of corruption. And big Pharma deals in billions. And if you want corruption ...that is home base for it. Tormenting the poor, the disabled, and seniors with ridiculous prices for their life saving medication.

I personally witnessed an elderly lady at a local business, deeply upset because the insurance made a mistake and she was going to be charged $150 for blood pressure medication that usually cost her $15. She did not have the money. She was afraid without her medication, she might die. She was a nice lady that I had dealings with. I came up with the $150 to make sure she would not drop dead.

So please, re corruption and medicine. Any system that will let a nice elderly lady drop dead, because of ridiculous obstructive and abusive rules...is the enemy of decent society.

I take a multi-vitamin with B vitamins. I honor information. I honor knowledge. Because of what you wrote, before I would engage with a B vitamin complex with a large amount of B6, yes, I will look into it.

I respect information.

"Food sources of vitamin B-6 include poultry, fish, potatoes, chickpeas, bananas and fortified cereals."

It is a natural substance. So, if you are proposing the idea that B-6 had a toxic effect on you, you really ought to investigate the full range of foods and other exposures you had during that time.
Because there is every chance, the B6 levels were coincidental, and the real danger to you is out there, undiscovered.

So, say the levels you took were the equivalent of a can of chickpeas. That would be evidence that it is probably not the B6 that caused your problem. If the levels of B6 were the equivalent of 100 cans of chickpeas, a level of the substance you would never encounter in nature...then, sure, something like that could cause a problem.

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You just made her case. 1 cup of chicken peas contain .2mg of b6. So to get 100mg of b6 means you would have to eat about 500 cups of chick peas to equal 100mg b6. The recommended b6 is 1.5mg for most adults . 100mg is excessive.

REPLY
@samcal9977zz

I have been around Vitamin B supplementation since the 1960s. I never heard of what you are suggesting.

There are endless professional scientific studies indicating the clear benefits of vitamins and other supplements.

The US NIH has recognized a wide range of these things.

If there is some kind of fringe problem with vitamin B6, that is only now being discovered, then we should, by all means, attend to those issues. Of course, there may be professional studies countering the idea that these levels of B6 are dangerous, I don't know. That is the nature of professional studies. There are, frequently, professionals who disagree. I know a bit about it, my ex was a 9 year post doc cancer researcher. Oh, yes, quite true. And yes, I helped her with her grant proposals.

So, while I don't have an MD or a Phd., I do know a few things.

So, for example, you took a supplement and four months later had a medical problem. That does not mean the two things are related. There could have been other, endless causes and the B6 was only coincidental during the period when the actual cause initiated the problems.

Or not. So, I take a Tylenol. Then, I get leg cramps. Did the Tylenol cause the leg cramps? Or were the leg cramps from doing my morning jog, but jogging twice the distance I usually jog?

Dr. Weil is an MD. He went to college. He got excellent grades. He got into medical school and graduated. He is a documented expert and professional. His advice is professional advice from an MD.

Anytime, anywhere, anybody suggests some herb or tea or vitamin can aid health, there is an immediate attack that tries to suggest all such things are nonsense. If you get into the science of it, that, oh....peppermint tea has no benefit, is really like saying that a healthy salad with leafy green vegetables can't possibly be good for you. That is the nonsense, the spin, the scam, the lie.

Of course supplemental nutrients aid health. Now, if you decide to drink 100 ounces of carrot juice daily and have some kind of toxic reaction to high levels of beta-carotene? Sure. If you do anything extreme, it can be dangerous.

I used to do accounting in a funeral home. One of the directors had been a rep for Big Pharma. He told me directly, that he and the other salesmen, used to go out for beers and laugh at how little of a bribe it took, for doctors to prescribe the drugs they wanted.

So, you know...please already, with the idea that every tea bag of chamomile tea is going to end civilization. Anytime big money is involved, there is plenty of corruption. And big Pharma deals in billions. And if you want corruption ...that is home base for it. Tormenting the poor, the disabled, and seniors with ridiculous prices for their life saving medication.

I personally witnessed an elderly lady at a local business, deeply upset because the insurance made a mistake and she was going to be charged $150 for blood pressure medication that usually cost her $15. She did not have the money. She was afraid without her medication, she might die. She was a nice lady that I had dealings with. I came up with the $150 to make sure she would not drop dead.

So please, re corruption and medicine. Any system that will let a nice elderly lady drop dead, because of ridiculous obstructive and abusive rules...is the enemy of decent society.

I take a multi-vitamin with B vitamins. I honor information. I honor knowledge. Because of what you wrote, before I would engage with a B vitamin complex with a large amount of B6, yes, I will look into it.

I respect information.

"Food sources of vitamin B-6 include poultry, fish, potatoes, chickpeas, bananas and fortified cereals."

It is a natural substance. So, if you are proposing the idea that B-6 had a toxic effect on you, you really ought to investigate the full range of foods and other exposures you had during that time.
Because there is every chance, the B6 levels were coincidental, and the real danger to you is out there, undiscovered.

So, say the levels you took were the equivalent of a can of chickpeas. That would be evidence that it is probably not the B6 that caused your problem. If the levels of B6 were the equivalent of 100 cans of chickpeas, a level of the substance you would never encounter in nature...then, sure, something like that could cause a problem.

Jump to this post

You have referenced NIH in your post. Here is an NIH reference article on B6.
https://ods.od.nih.gov/factsheets/VitaminB6-HealthProfessional/

REPLY
@vtsnowbird

My feet burn with neuropathy. A nurse friend sent me (from Amazon) a bottle of frankincense & myrrh. A very small amount rubbed into my feet actually soothes the burning pain. The bottle actually says Neuropathy on it. Use 2 or 3 times a day. Honestly helps

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Are you using an essential oil straight with no carrier? I am going to try.

REPLY
@kathiev

Are you using an essential oil straight with no carrier? I am going to try.

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Welcome @kathiev, I suppose it might depend on the specific essential oil. It's been quite awhile since I've used essential oils but I always used a carrier oil since it was recommended to me not to use them without using a carrier oil.

"People make essential oils through the distillation of the aromatic leaves, flowers, barks, and roots of plants. If they apply these oils directly to the skin, however, they can cause reactions, such as severe irritation, flushing, or burning. Carrier oils dilute the essential oils and help “carry” them into the skin."
-- What is a carrier oil? Best oils and uses: https://www.medicalnewstoday.com/articles/321639

Have you read something that said to use the essential oil without a carrier?

REPLY
@colleenyoung

To everyone in this discussion:
A friendly reminder about the Community Guidelines (https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/). Please see in particular guidelines 1 and 2 excerpted here:
1. Be careful about giving out medical advice
- Sharing your own experience is fine, but don't tell other members what they should do.

2. Remain respectful at all times.
- Exercise tolerance and respect toward other participants whose views may differ from your own. Disagreements are fine, but mutual respect is a must.
- Personal attacks against members or health care providers are not acceptable. Such posts will be removed.

Be supportive. Be kind.

If anyone has further questions about the guidelines, please contact me using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

With respect to vitamin B6 toxicity, see this reference from the National Institues of Health https://ods.od.nih.gov/factsheets/VitaminB6-Consumer/#:~:text=People%20almost%20never%20get%20too,they%20stop%20taking%20the%20supplements

EXCERPT:
"People almost never get too much vitamin B6 from food or beverages. However, taking high amounts of vitamin B6 from supplements for a year or longer can cause severe nerve damage, leading people to lose control of their bodily movements. The symptoms usually stop when they stop taking the supplements. Other symptoms of too much vitamin B6 include painful, unsightly skin patches, extreme sensitivity to sunlight, nausea, and heartburn.

The daily upper limits for vitamin B6 include intakes from all sources—food, beverages, and supplements—and are listed below. These levels do not apply to people who are taking vitamin B6 for medical reasons under the care of a doctor.

Life Stage Upper Limit
Birth to 12 months Not established
Children 1–3 years 30 mg
Children 4–8 years 40 mg
Children 9–13 years 60 mg
Teens 14–18 years 80 mg
Adults 100 mg
Some experts recommend lower limits for vitamin B6. For example, in 2023 the European Food Safety Authority set an upper limit for vitamin B6 of 12 mg per day for all adults, with lower amounts ranging from 2.2 to 10.7 mg per day for infants and children, depending on age."

Jump to this post

Thank you for moderating.

Yes, you are correct, there are folks who wall off into camps...

All natural medicine is quackery

or

All regular medicine is terrible.

I really don't mind people walking off into camps and expressing their views.

But when that includes personal criticisms, like the one I received...

That my post was "dangerous?"

Then, yes, that goes way way way too far.

I did not post my opinions. I posted a link to the opinions of Dr. Andrew Weil. He is an MD, not a snake oil salesman. He is highly regarded and nationally. Has appeared on national TV and on.

If I can't post information from him? Well, then my freedom of speech is really being suppressed.

And I definitely do not like that. At all.

Not too much being called "dangerous," and over nothing. What comes after being called "dangerous?" It literally makes me nervous that I am interacting with someone who might engage with threats.

Not ok.

The original post ASKED FOR ideas. I have some neuropathy myself. The subject is interesting to me. So I did some Google searches, both for the original person posting and for myself.

I find some info that I thought might be helpful and I posted it.

I have been a volunteer with the Community Food bank of NJ for 20 years. I did reading for the blind for 10 years. I love volunteering and I love helping...and I have been doing that since I was 13 years old, 50 years ago.

That is why I posted. Not to be a contrarian or to upset people. But simply try to help.

And I still need to learn a lot in order to solve my own problems.

I came on to these Mayo Clinic boards for a very simple reason. My wife's mother got diagnosed with pancreatic cancer.

I came on here and joined that support group, in order to find out information.

Within 3 weeks of being diagnosed, she passed.

It was, needless to say, a horror show for the family.

When I come on these boards, the memory of her passing is always in my mind.

Or, to be precise, the love of family comes to mind.

And to be in that state and have someone call me "dangerous?"

It is not ok. In addition to everything else, you are definitely interfering with the memory of my wife's mother. And that is not ok. It is not ok to throw mud on those human memories.

If you disagree with me, disagree with me.

But stay civil.

I am like anyone else in society who has reached my age...connected to all sorts of people. And, if threatened, I have connection to law enforcement and politicians, like anyone else has.

I remember being in a support group online when one member tried to ...literally, encourage another member to commit suicide. These things are not fantasy, they are not games, they are not ok. I called the police. They came over. The officers saw the posts, they were very concerned...and they took action. I don't know what they did...but like any decent person, they tried to protect someone from taking their life.

Please stay civil.

REPLY
@violetsteptoe

I agree re: acupucture helps..I go every 5 weeks to keep pain levels down in my neupathic -caused pain in mt toes and big toe!

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Thank you. I also get acupuncture. I get it for injuries from car accidents. It helps.

In reply to @samcal9977zz "I think, generally, we are too quick to label something as "a scam." Sometimes a supplement..." + (show)
I agree re: acupucture helps..I go every 5 weeks to keep pain levels down in my neupathic -caused pain in mt toes and big toe!

REPLY

It is very frustrating to patiently seek to find a root cause of neuropathy. I reached a point where I seem to get very little hope from doctors and I get sucked by supplement peddlers. Is there such a thing as the root cause of this condition? Has anyone been held? Is this orthopedic, metabolic or both? It seems to be a field of endeavor that would easily render super-status to someone or a company who can effectively tackle this elusive nightmare.

REPLY
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