GracePV shared their experience with B6, B12 nd B1. This inspired me to revisit my self treatment of my polyneuropathy.
I came across information about Benfotiamine which is similar to Thiamine Hydrochloride and Thiamine Nitrate. There are indications that it is more readily absorbed at the cellular level as evidenced by testing in a laboratory.
It is a new form and some randomized trials were actually done on humans and different doses used and even measured effects in 6 weeks rather than use it takes time if ever method. What a novel concept. : (
I will be doing a trial of 325 mg twice a day for 6 weeks oral as part of the way a 'normal' body processes Benfotiamine is in the digestive system. If that does not have an effect I will study injections of Benfotiamine and or Thiamine.
This information comes from the study of neuropathy experienced by diabetics. Those that study diabetes are of a higher quality that those that study B12. I no longer buy into it is a matter of funding because I find that would unlikely result in higher quality work. A government/nonprofit excuse for poor quality work. The solution is not always more money although that can result in higher quality work it may not and most often does not in the government/non profit sector.
A review of my work indicated that when I was taking a multi supplement it MAY have had a positive effect on my polyneuropathy and Thiamine was included in the multi supplements trials I tried. 6 months ago I stopped all supplements other than B12 and B6 as a way to isolate the effects of my supplements. I do not use the find what works method to achieve results.
I did note that science led the researchers to 300mg twice a day and the RDA is 1.1mg/day. Those that study/lead B12 treatment apparently did not note this science. The RDA of B12 is 2.4 per day so 1 mg every other day should be fine and those that lead will never feel a thing. The RDA should not be used other than RDA. Go figure.
I am aware you can not compare one compound to another linerialy. It should have led to testing and has not.
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WIZARD6787
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Very interesting. Fabulous that there is so much connectivity and inspirational sharings going on. Makes a lonely journey companionable.
I have also concluded due to trial and error that finding the “why” is a different question to finding the “how”.
I know HOW I am improving but to identify the WHY would be detrimental to my recovery. It’s a little like advertising 10% is effective but identifying which 10% is too costly a task (in terms of sales).
What I have concluded, and this was with the benefit of your shared experience ( WIZARD6787 ) is that all these supplements work together and there is no silver bullet. All are required.
However, what I have learnt is that it is the relative balance of these elements that is important. So no deficiencies or low levels as recovery is limited by the weakest link. It’s like making cakes regardless of how much butter, sugar or flour if only one egg then that egg dictates how many cakes.
Same goes for my gut - I cannot eradicate “bad” bacteria but I can ensure that “good” bacteria dominate. I liken to my bee hive - we cannot stop the wasps attacking but a strong bee colony sees them off and quickly repairs the damage.
What a fabulous forum this is! Well done Wiz for another thought invoking forward looking post!
I do get benefit from the sharing of personal experiences with self treatment. The information maintaining the status quo that medicine has solved B12 deficiency except for the amount of B12 I find unhelpful. The sharing of literature is great, the analysis is not. The predictions of what I will experience have been harmful. The assessment of risk is not credible and seems a projection based on personal fears. Took me a while to not trust the experts here and I endeavor to not write as if I am one.
I personally no longer experience emotional support from those on the forum and it is now about sharing results. It was helpful when I was in distress and deciding how to design self treatment. PMs are a different story. I get emotional support and give emotional support with those I love and know.
I no longer participate in posts that are not in keeping with my knowledge base but understand the value to those that are in distress as I used to be. Part of it is I am in the USA and deal with a different system.
For the last 6 months I have only supplemented with B12 and B6. I will get back to taking Simple Spectrum when I am convinced I have an understanding of how my current supplements affect my healing. It will suck of Simple Spectrum is wonderful. I now gather information for the long term.
Although given a diagnosis of gastritis it was in error based on symptoms. I used to take a probiotic in the morning as it helped when my digestive system was healing. I made the decision to assume my digestive systems issues were the result of my neurological system and that has been shown to be true. Part of my digestive symptoms was under supplementing B12. Giving enough B12 for my body to function less worse but not enough to heal.
I currently experience no digestive issues.
I spent a lot of energy studying the how. It was valuable to understand no one knows although some state they do based on looking at one part of the process in a petri dish and drawing a conclusion and calling it science as an experiment was done when in reality it is applied science which is never definitive although often treated as such.
Just be careful with Benfotiamine, it's potent stuff I hear! Might be worth trialling a lower dose than you are proposing first, then work your way up. Then there is thiamine tetrahydrofurfuryl disulfide, supposedly an even more bioavailable form of B1 which some people swear by but should be added very slowly in small amounts. I am about to start adding Benfo to my regime soon. I look forward to reading your updates on your trials.
I could not find a randomized trial with amounts done with thiamine tetrahydrofurfuryl disulfide and no information that it was more effective than Benfotiamine based on laboratory models AKA bioavailable.
Good to know it is known to be 'powerful'. My best information is that 300 mg taken twice a day is the most effective known. So I will start with 325 mg twice a day which is readily available as that will give me better data. I have experienced healing too fast and suffering from under supplementing. I choose to heal too fast and back off to get better information rather than try and sneak up on the most effective amount. Not a more must be better guy. I work with what is most effective.
I have come across no compare and contrast studies with different forms of supplements. Projected results are derived from results in a petri dish not a human which does not seem to result in satisfactory results with autoimmune disease. For the patient.
I think all forms of B1 have value, just depends on the person what works for them in terms of type and dose. It seems to be that way for many if not most nutrients. Hope your testing produces good results 🙏 I will certainly be keeping an eye out for your updates 😊
It is hard as what 'works' is a personal decision as there are no tests. What might be acceptable to one person is not for another.
I am drawn to Benfotiamine mostly as there were some small randomized trial measuring pain by utilizing a tuning fork and three different amounts. That 300 mg twice a day was most effective gives me a place to start.
It does seem to me that amounts and frequency are heavily influenced by the medicial field and they tend to see under supplementation as being 'good'. It also seems to me that people tend to modify what the medicial field sees as adequate by a small amount and call that good enough.
One of the hardest part of all this is evaluating what is effective. For me anything 'works'.
I would have been ecstatic if I felt as good right now 30 days ago. That has been my experience with every supplement improvement in the last 14 months. The three years prior it was a matter of feeling less worse as I was severely under supplementing because I did not know any better.
Yes, less worse is a good starting point but of course we all want to feel truly well...but getting there seems so very complicated, with the up's and down's. The down's make one feel one must have done something wrong and possibly then change course prematurely. You are obviously willing to ride the roller-coaster and push through the unpleasantness, and that has brought great improvement!
It is part of my process that I go to a place of self doubt when experiencing a downturn due to improved supplementation. That place can also lead to inspiration.
I have little issue with trying to find an expert to help. They may exist until they make themselves known I go with I am on my own. That does not mean I cannot gather information from them, just I have to create and not simply follow.
It helps that as a consultant I will not work for those in the medicial field. I made that choice thinking they were arrogant. Come to find out my work requires creativity and they assume my work like theirs is a matter of following the check boxes.
This work is complicated and has a high degree of difficulty. Some tend to not understand that it can not be simplified into being complex which is a matter of many different parts. In fact it can be reduced to complex if one is not about the most positive results for the individual.
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