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Neuropathy pills: How to avoid scams?

Neuropathy | Last Active: 1 day ago | Replies (732)

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@bigjohnscho

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.

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Replies to "I am new to this forum although I have been suffering with peripheral neuropathy for 2..."

Hola
Alguien sabe del desarrollo de Winsantor que hasta donde conozco ha desarrollado un medicamento que no solo detiene la neuropatia sino que restaura los nervios dañados o sea que tiene un efector reversible.
Hasta donde se, estan ya en la fase 3, para su autorizacion y la ultima informacion que tengo es que en el transcurso de este año terminarian de hacer sus pruebas y ofrecer el medicamento comercialmente

I thought this thread would be appropriate to ask has anyone tried Calmare therapy? It’s fda approved and non invasive but it looks to Run 4-6 grand and seemingly unlikely insurance will help. I would risk it for any semblance of hope but I can’t afford to lose that money to a complete scam. But god I’m desperate

Spinal Cord Implants for Peripheral Neuropathy: Has anyone had any experience (good or bad) with spinal cord stimulators? How well did it work? What percentage of pain relief did you realize? Were you able to come off your pain meds? Did you experience any infection issues? Brand of the device you had implanted? Based on your experience, would you recommend an implant to relieve neuropathic pain?

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.

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/

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

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."

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.

I hope no one here is saying that "all natural medicine is crap"; it's just not really tested yet, so you're making yourself into an experiment (natural medicine that's gone through trials and approvals is simply called "medicine," the same as the more-synthetic stuff).

Lots of good and lots of harmful stuff comes from natural sources, and sometimes the same substance can be either depending on the usage and dose (e.g. digitalis from foxglove, which in smaller doses can help treat heart disease, and in larger doses is a popular poison in golden-age murder mysteries).

I have PN . I take R Alpha lipoic acid 1200 mgs per day . I also take Acetyl Carnitine , vitamin D , Fish oil . I also take 800 mg of Gabapentin . I also take one thc gummy in the morning , At night
I put a salve on my feet . It is Mary Janes salve . It is 4000 mg of cbd . I mix it with Magnesium lotion . I really quiets my feet down at night . I wish you the best . Never quit . Never give up or in !!