I decided to do a trial of Berfotiamine after reading randomized trials for peripheral neuropathy in diabetics. Yes there is work with efficacy done, just not with B12 deficiency. 1mg EOD is good enough treatment and the maximum ever needed.
I no longer experience peripheral neuropathy due to my supplementation of B6. It was agony prior to my self treatment with B6.
However, I see all my symptoms as neurological.
The electricity and therefore heat at my house went out and I woke up in peripheral pain. I injected B12 and the pain went away and I slept. This was a one off but I considered that I was not as well as I thought or I would not have been in pain. This led me to this trial along with actual testing for efficacy even though it was specific to diabetes. There is no competent work being done with improved treatment of B12. It is stalled at EOD and using RDA's as a measure which is not legitimatie for treatment if at all. It is legitimized by bureaucracy not scientific testing although some science is used as a justification for the bureaucratic platform.
I took 300 mg Benfotiamin at noon and then the next day started 300 mg twice a day.
I immediately felt my feet were 'buzzing' the next few days my back hurt a bit, I was sneezing a lot which is not typical for me, I started to burp and I do not burp. By day four I was having quick very painful headaches which progressed to sharp pain in my neck one side and then the other. None of these symptoms were overly distressful. I seemed to be breathing easier but this was subjective. I use the assumption that if my body changes when I administer a water soluble vitamin with no upper limit that is a sign of healing. This is an assumption on my part and has been shown to be true over time for me.
So I stopped the trial as I wanted more information from my administration of B12 by injection. "You do not rise to your level of goals you fall to your level of system." So took the information from my 5 day trial and went back to my system. NOT find what works.
I also reviewed the following pubmed.ncbi.nlm.nih.gov/102.... It is just an abstract and from Pakistan. It is fraught with the possibility of misinterpretation when reading work from another country. That is true in my field of environmental science even from state to state and between english speaking countries. That is my field so I can deal with it.
I have two more trials to do with injecting B12 and once I have the information from that I will revisit my other supplementation. Resisting the draw of simply finding what works although that will obviously be the result, it is not my system/method.
I also reviewed pubmed.ncbi.nlm.nih.gov/102... which again was done with diabetics for the efficacy of benfotiamine dosage. I noticed that the trial included twice a day. Good applied science.
I am having to work very hard to stay with my system and not look for the quick fix without the information I need long term. Oh bother.
My read on cofactors is that they are the result of petri dish analysis only and no trials of efficacy have been completed and amounts, frequency and concentrations are not credible. A failure to follow up on the information gained from the petri dish analysis. When not dealing with credible data humans tend to under do as a way to not make errors that result in damage, an emotional thing.
I found this helpful; I have read often that peripheral neuropathy is symmetrical and this is not the case with me. I am guessing that is written to make sure that the cause of the peripheral neuropathy is not a stroke.
I also do not put great faith in that the testing for levels of any vitamin or mineral is useful to determine efficacy.
I also wonder if the concept that some vitamin or minerals are use up when supplementing B12 is not really that is how the body adjusts to under supplementation of B12.
I am considering a trial of oral supplementation only. I now have the experience and information to evaluate that regimen.
Pretty much I am closer to where I want to go it is a time for tenacity.
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Most of the science work done on Vit B1 is written in Japanese and not translated in the West unfortunately. If you get increased symptoms on supplementing it, that is supposedly, paradoxically, a sign that you need it. I use TTFD because I get improvements with it without the unpleasant side effects of Benfotiamine but the side effects of the latter can be mitigated by starting slow and gently raising the dose. I have also improved my symptoms with lowering histamine in my diet.
I have yet to have any side effects from any supplementation other than my body adjusting to better supplementation although I could have seen the adjusting as a side effect.
Good to know that there is some information from Japan. I do not happen to have a contact I can utilize but likely I or someone else I know can access that information. Globalization!
I have for 6+ months worked with the principle that if I change the frequency, concentration or amount of B12 and it has an effect than eventually it will be positive. Easier now as it only takes a week for improvement to be obvious where before even with 1.5 mg per day the results were positive after a month and then not dramatic. I bought into the I will eventually heal advice for 3 years. I never bought into the damage was permanent.
Currently injecting 6 to 7 times a day 4.5 mg with dramatic improvement.
I no longer try to start slow and go with I can always reduce. The sneaking up on my deficiencies did not serve me well so I do not use that methodology any more.
I also do not attempt to lessen symptoms rather I work on elimination.
Benfothiamine is an amazing supplement. I encourage everyone to track their food and supplement intake on cronometer to find out how much b1 they are taking in. B1 deficiency is ignored for some reason although I believe many people are deficient, especially those like me that don't eat much enriched flour products like bread, cereal and pasta. B1 is usually not in multivitamins. Anyways, benfothiamine did help me resolve sole issues I had remaining after being on my b12 injections for a long time. The most substantial improvement was in my stomach issues. I've had stomach issues for over 40 years. Benfothiamine was the key to fixing it. I don't wake up nauseous anymore, I don't get painful stomach bloating every time after I eat literally anything, I just don't have stomach pain at all anymore. Great stuff but everyone should do their research before supplementing. EO Nutrition on youtube is a great reaource.
I discontinued the B1 to get back to my work on B12. 48 hours later it was obvious I had less energy and am now suspending my work on B12 supplementation (Keeping it the same.) and administering B1.
Expect I will become a B1er. Along with my B6.
Not looking forward to going through my body adjusting to B1.
Thanks for that. I was not aware of that. It is thought that it is more effectively absorbed due to it being lipid-soluble. It is a life changer for me unless the life changer is getting more sun energy.
Did you supplement with B6 upon discovery of your deficiency? I was also on the cusp of deficiency (had the lowest # withing range) and wondered if it was a cause of peripheral neuropathy I've been experiencing. If you did supplement what did you do and did it alleviate any symptoms?
I started supplementing with B6 January 2021. I started a trial based on the information that B6 deficiency was often missed by testing and best done clinically. I knew that the medicial staff I was paying was incapable of making a correct diagnosis of any issue clinically and they relied on testing and then often misinterpreted the tests. Then when treating rather than following the protocol they would under treat for reasons unknown. At the time I did not understand this to be systemic.
My B6 deficiency was not so severe at the time that I had cracked lips and tongue issues although it had been an issue through out my life.
It was the debilitating pain of peripheral neuropathy combined with the sores I got in my mouth, associated with stress that led me to do a trial of B6. I happened to try injections and the effect was immediate and a relief of the debilitating pain due to B6 deficiency. After about a week I went tubing instead of laying in bed in pain 1/2 the day.
I would only take 5-P-5 due to possible issues with other forms at 500 mg per day for a year.
The NIH upper tolerable limit for B12 is 100 mg per day there is no allowance for what form is taken unless under the care of a doctor.
My body does not utilize B6 similar to a normal body and I take 150 mg per day orally too prevent pain of peripheral neuropathy I have three times done a trial of reduction of B6 resulting in the return of the pain in 8+- days.
My peripheral neuropathy has been limited to sometimes being able to feel numbness other than when I improve my supplementation then it comes back a bit and I see it as a sign of healing as it quiets down in a few days.
I did have one night this winter when the electricity went out and I was sleeping in very cold temperatures. The peripheral neuropathy came back with a vengeance and abated when I injected. I took it as a sign there was more healing to do than I knew.
I experienced what is called reversing out which was debilitating and caused by smoldering my neurological system by undersupplimentation and that that went away when I started injecting 1 mg 4 times a day then I experienced the effects of healing.
I appreciate your time taken in responding. You've given me something to think about - I had no idea that b6 also came in ampoules for injection. I will incorporate that into my b12 injection routine if I can find the P5P in ampoules (that will also ship to the US!). In the meantime I have supplements - at some point I stopped taking extra B6 because I thought it was making my PN worse, but I thought that impossible as I'm nearly deficient. It's a dart game!
I have not found 5-P-5 to inject and oral is effective for me.
The amount I take is not high it is effective. 5-P-5 is not the form of B6 that causes temporary peripheral neuropathy. It is the other forms of B6 that interfere with the 5-P-5 that exists in the body. 500mg per day over a year of the other forms may cause temporary peripheral neuropathy in some people
B6 tests are not of any value to me and I use symptoms as my criteria for evaluation for B6.
It is study not experimentation that I use to determine toxicity. Not about to take a supplement until it is toxic.
I do not use the dart game method. I study, determine toxicity etc then decide what trial to try.
I do find those that use the dart game method and report what is effective for them to be helpful information when designing trials.
The most helpful information comes from successful case studies. I think I have reviewed three other than Chandy done 30 years ago. The studies which are really simply a biased view of current literature are no longer helpful to me. They were when I started as an overview.
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