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.

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.

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 developed B6 Toxicity from ingesting 100 MG B Complex for 4 months. My primary symptom was neuropathy, but there are others caused by the Small Fiber Polyneuropathy that this neurotoxin can cause. Research now shows adverse effects of B6 in amounts as low as 1.4 mg. The proposed upper limit in Getmany is 3.5mg. The EU proposes an upper limit of 12 mg. Australia requires warning labels.
for products containing more than 10 mg. Learn more at UnderstandingB6Toxicity.com Also, there is a FB support group Understanding B6 Toxicity Using Western Research

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.

Jump to this post

Dangerous advice in my opinion. I had slowly progressing neuropathy in my feet while taking 10mg b6 in emergc for 2+ years then added 20mg b6 in the melatonin I was taking and it progressed much more quickly over next 2 years. My b6 levels were 5x normal when tested.

REPLY
@mlee5309

I would love to know if anyone has tried hyperbaric chamber sessions for neuropathy. I am out of ideas but I’ve never tried this or seen ir mentioned. Probably a scam but I’m desperate enough to fall for any scam at this point

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Yes I tried this along with red light therapy, some type of ultrasound treatment and some type of electrical stimulation. It was a package deal. It did not help.

REPLY
@smutchler

I developed B6 Toxicity from ingesting 100 MG B Complex for 4 months. My primary symptom was neuropathy, but there are others caused by the Small Fiber Polyneuropathy that this neurotoxin can cause. Research now shows adverse effects of B6 in amounts as low as 1.4 mg. The proposed upper limit in Getmany is 3.5mg. The EU proposes an upper limit of 12 mg. Australia requires warning labels.
for products containing more than 10 mg. Learn more at UnderstandingB6Toxicity.com Also, there is a FB support group Understanding B6 Toxicity Using Western Research

Jump to this post

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.

REPLY

Here is a recent study on the upper tolerable limit of B6. It is approximately 100 pages.

Scientific Opinion on the Tolerable Upper Intake Level for Vitamin B6
https://efsa.onlinelibrary.wiley.com/doi/epdf/10.2903/j.efsa.2023.8006?fbclid=IwAR2lR8-FfjAaln8kPakhEq1AJjgwHJm4yVFaqLUgSw_C2qEU-hRa5pSn7qA
My B6 Complex had 5,882% RDA of B6. The % of B12 is higher. B12, however, is not a neurotoxin. B6 is.

The medical diagnostic code for B6 toxicity is E67.2. There are 8,300 members on the FB support group referenced above, many whose serum B6 levels have been 5x the upper limit due to B6 vitamins.

I simply described my experience and the research that is out there. If the info above doesn't convince you, there are 180+ sources that discuss reasons for B6 Toxicity at https://understandingb6toxicity.com/research/index-of-sources/

REPLY
@smutchler

Here is a recent study on the upper tolerable limit of B6. It is approximately 100 pages.

Scientific Opinion on the Tolerable Upper Intake Level for Vitamin B6
https://efsa.onlinelibrary.wiley.com/doi/epdf/10.2903/j.efsa.2023.8006?fbclid=IwAR2lR8-FfjAaln8kPakhEq1AJjgwHJm4yVFaqLUgSw_C2qEU-hRa5pSn7qA
My B6 Complex had 5,882% RDA of B6. The % of B12 is higher. B12, however, is not a neurotoxin. B6 is.

The medical diagnostic code for B6 toxicity is E67.2. There are 8,300 members on the FB support group referenced above, many whose serum B6 levels have been 5x the upper limit due to B6 vitamins.

I simply described my experience and the research that is out there. If the info above doesn't convince you, there are 180+ sources that discuss reasons for B6 Toxicity at https://understandingb6toxicity.com/research/index-of-sources/

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I’ve just checked my Bcomplex and the B6 is 2mg

REPLY

Has any one tried this Lysozyme Protocol that on the internet. I nearly bought it but couldn’t use PayPal, so didn’t bother.

REPLY
@smutchler

Here is a recent study on the upper tolerable limit of B6. It is approximately 100 pages.

Scientific Opinion on the Tolerable Upper Intake Level for Vitamin B6
https://efsa.onlinelibrary.wiley.com/doi/epdf/10.2903/j.efsa.2023.8006?fbclid=IwAR2lR8-FfjAaln8kPakhEq1AJjgwHJm4yVFaqLUgSw_C2qEU-hRa5pSn7qA
My B6 Complex had 5,882% RDA of B6. The % of B12 is higher. B12, however, is not a neurotoxin. B6 is.

The medical diagnostic code for B6 toxicity is E67.2. There are 8,300 members on the FB support group referenced above, many whose serum B6 levels have been 5x the upper limit due to B6 vitamins.

I simply described my experience and the research that is out there. If the info above doesn't convince you, there are 180+ sources that discuss reasons for B6 Toxicity at https://understandingb6toxicity.com/research/index-of-sources/

Jump to this post

I’ve been taking supplements from Nuphoria. They are very high in B6. According to them there are 2 types of B6. Even though when I tested for B6 it came out sky high, I was told that they both test the same. According to them, taking high doses of one is perfectly safe and one is toxic. I’ve heard this from a couple of other sources as well. None of the neurologists I’ve seen have heard of this. Here is a link to their YouTube video. https://www.youtube.com/watch?v=KIM_J93ycvA

REPLY
@bobcardi63

I’ve been taking supplements from Nuphoria. They are very high in B6. According to them there are 2 types of B6. Even though when I tested for B6 it came out sky high, I was told that they both test the same. According to them, taking high doses of one is perfectly safe and one is toxic. I’ve heard this from a couple of other sources as well. None of the neurologists I’ve seen have heard of this. Here is a link to their YouTube video. https://www.youtube.com/watch?v=KIM_J93ycvA

Jump to this post

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

REPLY
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