Benfotiamin: Current Trial (7 Days);... - Pernicious Anaemi...

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Benfotiamin

WIZARD6787 profile image
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Current Trial (7 Days); 1.5mg methylcobalamin 3mg/ml, 1.5mg adenosylcobalamin 3mg/ml, 1mg hydroxocobalamin 1mg/ml. SC injection 5-6 times a day including setting an alarm to inject at night if warranted. 50 mg B6 in the form of P-5-P three times a day or pain from peripheral neuropathy returns. Benfotiamin B1 300 mg three times a day.

The major change in my current trial is the addition of B1 in the form of Benfotiamine it caused the most dramatic improvement since I started B6 3+- years ago. It has improved how I experience life dramatically where the B6 was about relief from the pain of peripheral neuropathy. I have not experienced debilitating fatigue for 7 months, since discovering the effective duration of B12 is somewhere between 3 and 6 hours. I was using the term fading and brain haze. They are both all but eliminated as is my stuffy head.

My challenge right now is to adjust to the improvement. Had any expert come up with my current trial I would likely never have gone any further and called this good enough. Another way to express the effectiveness is that I am somewhat on par with a year prior to my being in the hospital 4 weeks from death.

I will keep going with my exploration and discovery and my methodology makes it relatively easy to do that work.

So this is what happened. I read pjmhsonline.com/2013/july_s...

It is research about peripheral neuropathy that diabetics experience. It used testing designed by study. Unlike what is called research of B12 which is nothing more than reviewing past studies online and forming a personal opinion. Not leading to any change in treatment.

As I was already supplementing B6 it was a matter of adding B1 and this study even used amounts of supplements. What a concept!

B6 and B1 are not unlike B12 in that the rational approach is to do the testing which is not conclusive and then do a trial.

I did a trial of B1 for 5 days went though symptoms reappeared although not as debilitating. Decided to stop and return to my work with B12. On the second day of stopping that trial I happened to drive 1.5 hours to the ocean. The third day it seemed to me that I was more tired and took the opportunity to recreate the day before. Not often I have a chance to evaluate by repeating that closely.

Sure enough I was more tired the next trip and it was reasonable to assume it was the result of stopping the Benfotiamine. I restarted the Benfotiamine and sure enough I experienced more energy throughout the day. I have come to understand it was not more energy rather less brain haze.

I am pleased and angry this possibility is unknown by all experts.

So now I have to do a major redesign based on this information. The choices I have come up with so far are read what is thought to be true about the ‘cofactors and make rational choices with each one or go with “Simple Spectrum” which although designed for those with autism it is the best substitute for a B complex I have found although I will recheck my notes from last winter which includes an analysis of ANRC. I found the Simple Spectrum to be effective but stopped once I came to understand the flaws in the understanding of B12 treatment. (It does contain Thiamine B1.

I also need to design a new way to evaluate what I am experiencing now. I am leaning towards how I feel when I wake up and how I feel about going to sleep at night.

I may just go with performance for the summer. How much further can I hike and swim. That would be the most desirable although has the risk of me pushing and simply accomplishing.

I have some pondering to do and that is my highest level of analysis. It is also possible I am at the level of understanding and knowledge where I can only work on designing and evaluating once a week. I have done that with other study.

Note: My pee turned reddish for the first time in 3+ years of injecting B12 and the only major change was adding the B1. Interesting.

As always I appreciate that I am allowed to post here. I can not not really contribute to general discussions as my replies would always read like the old man on the porch. "Well back in the days I ...."

I am more about seeing what I do as treating my neurological system rather than B12 deficiency as I have not been B12 deficient for while and treating with B12 is only a small part of how I heal. Supplementing is really adjunctive to how I heal.

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WIZARD6787
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17 Replies
Cornwaller profile image
Cornwaller

Have you looked at the work of Antonio Constantini with B1 in Parkinson's and also for fatigue in other autoimmune diseases. I think it may be of interest. Curiously his results are generally ignored although there are PD patient groups which successfully apply his methods.

Best wishes and thank you for sharing your observations.

WIZARD6787 profile image
WIZARD6787 in reply to Cornwaller

Thank you for that!

I read some of their work and it is amazing and not at all surprising to me that his discovery is ignored.

I find it important to note that his work is actually Thymine high doses and other small quantities other B vitamins. Also that the patients showed normal Thymine levels.

I am more and more looking at B12 is more popular than more important due to B12 treatment history rather than fact.

This is not to discount that some people experience very positive results with just B12 alone. I also allow that more improvement may be possible with other treatments

Bertiepuss profile image
Bertiepuss

Great to read about your progress with Benfo supplementation, I am very interested to know how this is going for you so glad you've updated us. Interesting to hear about the red pee! Look forward to hearing about the next self-experimentation result. Can I ask with supplement brand you are using please?

I was using the term fading and brain haze. They are both all but eliminated as is my stuffy head - an accurate description for me personally - I would like to eliminate this too.

WIZARD6787 profile image
WIZARD6787 in reply to Bertiepuss

The trial/experimentation is the easy part. It is the study to design the trial, what to trial and the design of evaluation once I know the trial has an effect. It is easier now when I have results in days rather than months when under supplementing.

I am using Nutricost Benfotiamine 50 300 mg 90 count capsules which I purchase on Amazon USA.

Bertiepuss profile image
Bertiepuss in reply to WIZARD6787

Thank you wizard, I'll take a look at that one. All the best with further experimentation.

B12life profile image
B12life

So glad to hear you have found something to give you that additional boost in health.

I'm a firm believer in b1 myself. I haven't dared go above the 250mg as it can depleat other nutrients if those other nutrients are also not supplemented along with it, and potentially cause some symptoms when tapering to higher doses. So I haven't taken the risk just yet to go higher.

I purchased EONutrutuon's guide which is very thorough but haven't sat down and started.

I am excited to see someone here do it and report. Please do tell us if you run into any hiccups or learn more about the nuances of how to high dose b1.

are you supplementing with magnesium, potassium and any other things?

Bertiepuss profile image
Bertiepuss in reply to B12life

Which one do you take B12life? Do you use the products from EONutrition?

B12life profile image
B12life in reply to Bertiepuss

I have have been using both. I just started with one a day. I also take Magnesium and potassium.

Just try one and see how you like it. Benfomax and thiamax are both good.

Beware of the paradoxical reaction. And keep up on the cofactors that eonutrition mentions, such as magnesium, potassium and b multi. Metabolism of b1 requires these cofactors so high doses of b1 can deplete these and cause other symptoms and problems.

Based on dr Lonsdale's info which EONutritiin bases his info.

As he mentions, he has a FB support group where you can ask questions to others trying this.

Watch this video and he has others that are more thorough. I also bought his high dosing guide which I find pretty informative. He seems to know his nutritional science when it comes to b1.

youtu.be/K4iAPfAFcs0?si=cWr...

Bertiepuss profile image
Bertiepuss in reply to B12life

Thanks B12life, I have watched a few of his videos, thanks to reading about B1 on another members post you replied to! I just haven't yet tried it as I've been trying to sort out my ferritin first. Finally it's time to look at B1 properly so I will watch this video again, thank you!

B12life profile image
B12life in reply to Bertiepuss

yes. sort one thing out at a time for sure!!!! too many variables will make symptoms confusing.

Thus once you decide to do this, I think starting with the 250mg of benfomax or the 200 of Thiamax is good and just be sure to do magnesium once a day, a multi-b vitamin w/o b6, then a b6 in the form of p5p. I do 50mg per day of the p5p b6.

When you decide to increase the dose higher, that's when I would dig into the info from EONutrition about what other cofactors to add.

Bertiepuss profile image
Bertiepuss in reply to B12life

Thank you for sharing, very helpful indeed! 😊 I've been supplementing magnesium for years and in fact have been of 50mg of B6 P5P plus another B complex without B6 for a while so sounds like I'm on the right road. Thiamax looks interesting as it has all the different types but I'll open a capsule and titrate up gradually. Thanks again for your input, it's much appreciated.

WIZARD6787 profile image
WIZARD6787 in reply to B12life

Thanks for that. I watched the video. He seems to be very rational + fact-based! I'm going to print out the information on his website and study it. In this moment it feels like he's going to save me a lot of work that I had planned on doing.

WIZARD6787 profile image
WIZARD6787 in reply to B12life

>>So glad to hear you have found something to give you that additional boost in health.

I continue to do the work and study to effectively self treat. Hardly an appropriate description to call it a boost in health. I also did not just find it.

It is not a high dose it is an effective dose therefore an appropriate treatment. Less would be marginal with unknown effect.

I no longer risk under supplimentation.

>>it can deplete other nutrients if those other nutrients are also not supplemented along with it, and potentially cause some symptoms when tapering to higher doses.

I have no information this is credible and no reason to believe it is.

B12life profile image
B12life in reply to WIZARD6787

Ok. That's nice.

WIZARD6787 profile image
WIZARD6787 in reply to B12life

Thanks again. I ordered the document. Feels like entering 2023!

B12life profile image
B12life in reply to WIZARD6787

glad you like it. I enjoy your posts Wizard6787!

WIZARD6787 profile image
WIZARD6787

Currently only B1, B6 and B12. Most likely my next trial will be with magnesium citrate.

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