The continuing saga of megadoses of vitamin B1, CFS, and writing

The problem with many experiments, especially for people with diseases like mine (CFS), is that you never hear what happened after an initial favorable report, and so are left wondering.

This is similar to what happens to news reports: initial enthusiasm over something interesting, followed by… Nothing!

***CAUTION: I have no medical training – take everything you read here as MY experience, and, if you are interested in trying B1, do your own research, consult your own medical people, read widely, and make your own decisions.***

[Also note: this is Invisible Disabilities Awareness week.]

As I appear to be one of the people with CFS (PWCs) who is BENEFITING from taking megadoses of vitamin B1, and the changes have been significant for me, and are still continuing, I am committing to reporting every couple of months until people get bored, I get completely well, or it stops working for me.

Many people appear to have good results – but I’m a writer and have a blog. I can’t stop myself from pouring details out in 1000-word chunks and sending them out into cyberspace.

I’d also like to hear other people’s results – and I dearly wish there were someplace medical we could all accumulate our anecdotal results and experience.

This is a long post because I want to be able to refer to it, so I put everything into it that I thought might be relevant.

Your results are welcome in the comments.

My status pre-B1

I have had CFS for 24 years. It cost me my career in physics – and my children have never really known a mother with enough energy to get through the day. It makes me a VERY slow writer for the fiction I’m working on (Pride’s Children – see tab above – and one of the three main characters has CFS).

cfidsselfhelp.org has a useful scale to quantify CFS symptoms. They have a simple Rating Scale, which you can download by going to http://www.cfidsselfhelp.org/library/type/log_forms_worksheets.

Earlier this year I would have assessed myself as close to a 30, better in some areas, worse in others, on their scale (I was much lower when I first got sick):

“30 – Able to leave house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work at home or activity like housework, shopping, using computer.”

If I kept it to not leaving the house more than 3 times a week, my ability to do things at home was not affected, but if I had to leave the house more than that (add a doctor’s appointment to church, yoga, and one tiny shopping trip) – the week was shot: I had to take extra naps before leaving the house, and if I didn’t get one as soon as I got home the rest of the day was shot.

I required 3-5 half-hour rests a day: my body temperature would drop, I would rest/force myself to rest for the half-hour, and then face getting up and waking up again – an exhausting task in itself.

I tried to make my writing the ‘2 hours a day of … activity’ – but with only that much functionality, and the long list of things that need doing just to be alive (food, very minor housework, phone calls, house…), the days when I could effectively write for a couple of hours were scattered at best.

Physical exhaustion, and the inability to stand for long were major problems: when I wasn’t exhausted, I found it very hard to force myself to do the things that needed doing. It is psychological: when your life is so restricted, you NEED some good things in it just to not go crazy, so I tended to do something that would make me feel good but wasn’t much work, like reading a book or playing a computer game. I know – no willpower – but willpower actually takes a LOT of energy (see post on Decision Fatigue). Needless to say, the backlog of ‘stuff to do’ is very long.

My status with B1

Somewhere between a 40-50 on the CFS/Fibromyalgia Rating Scale: I can leave the house more than 3 times/week without major problems – but still try to keep the number of outings as low as possible.

Some days I make it without any naps; others I take one nap – and time that either before or after one of my out-of-the-house experiences; once or twice I’ve needed 2 naps to compensate for bad night sleep or unavoidable extra outings.

I can do SOMETHING useful maybe 4-5 hours a day (writing, light housekeeping, phone calls) and be reasonably coherent doing it. I’m trying to spend the new energy on the writing first (and yes, I know that’s selfish – but a good writing day is a strong psychological booster, and I need those to face the other backlog jobs). I estimated 20% more energy; that is still a good estimate.

The exhaustion and brain fog are major problems (but better) – it still takes several hours for the B1 to kick in and my brain to be usable for a while. Decisions are a problem – each one uses up energy, so I try to get Freedom on (1 decision) to block the web vs. telling myself that I’ll only read a couple more websites (many decisions).

I have worked hard to get a semblance of a proper walking stride back (very long story for another day), and I’ve now added walking barefoot laps around my yard so I can get some physical conditioning back. Baby steps in more ways than one. But it does suck up some of my newfound energy.

I would dearly love to kick the functionality higher on the rating scale, but I am learning that I have to use what I have gained much better first. Maybe the 20% will be more like 30% effective increase when I learn to manage myself better.

How much vitamin B1 am I taking?

B1 Experiment Report: I’m taking 2600 mg. total as follows:
1500 mg. B1 + 300 mg. benfotiamine* – 9 am
500 mg. B1 + 150 mg. benfotiamine – 5 pm
150 mg. benfotiamine – midnight

I titrated slowly up from 250 mg. B1 a day for three days, adding 250 mg. more every three days. The total dosage necessary seems to be related to body weight or total blood volume. Smaller people (I weigh 185 lbs.) should need less. This is me – how to achieve the correct dose is not a science; I may be taking too much, but I don’t think I need more, as the results have not changed much toward the upper levels of the titration. I didn’t get much of an effect until around 1500 mg. B1 (and at that point hadn’t added the benfotiamine yet). I added the benfotiamine because of reports that the fat-soluble form helped more with pain.

*Benfotiamine is the fat-soluble form of B1

Unexpected benefits of taking megadoses of vitamin B1

Quality of sleep: I’m dreaming vivid dreams, usually awakening to one still going on, which I get to enjoy for a bit before getting up (I love dreams – they’re my brain telling me stories). The sleep is 20% more restful – if I had to quantify it. Except for the times I fight going to sleep – and thus keep myself awake past the optimum point, and then have to wait for the next cycle – I’m getting to sleep faster. I’ve added an eye mask, making sure I’m not hungry, and limiting liquids – and the total effect is better sleep. Usually.

Body temperature: I used to have daily cycles of body temperature, so marked that they served as reminders to rest. I’d be sitting at the computer, realize I was freezing, add more clothes – and then finally the brain would say, ‘Remember – this means take nap.’ Rinse and repeat up to 5 times in a day. The daily clothing routine was on again, off again with the sweatshirt – all through the day. The body temperature is now stabilized – I rarely have that cold feeling.

Pain levels: This was unexpected, too, even though Karen Lee Richards’ FM report on B1 WAS mostly concerned with pain – her fibromyalgia pain was largely relieved by the B1. I thought I had pain under a reasonable control with Celebrex 200 mg. twice daily; but every morning I used to wake up with joint pain that hurt more while I was trying to work it out with gentle bending and stretching. Now I wake up stiff, but mostly without pain, and working the pain out just feels like needed limbering up, not like the torture it used to be. Note: this benefit came ONLY when I added the benfotiamine.

Expected benefits of taking megadoses of vitamin B1

Brain fog: It is better, but that is hard to quantify. I seem to get more time daily with the capacity to think. I’m trying to learn how to use it, make it last, not waste it. But I am not ‘well’ or ‘normal’ and it is still a major struggle. I have periods – especially when I concentrate on one thing, such as writing, or paying bills – when I can function: removing the distractions of trying to deal with everything at once helps. The mind wants everything to be ‘all better now,’ and it just isn’t so. I’ll report later on my efforts to USE my increased capacity more wisely. But I can FEEL it – it is better. I hope when I get over some of my bad habits (as I’m learning to do), I will get ‘more’ done. Meanwhile, though, the struggle seems easier: I AM doing more. I participated in a writing challenge (Web Serial Writing Month) during August, and while I didn’t quite make my goals, I couldn’t imagine even trying a challenge in previous years.

Napping: As I said, not having to take so many naps also means I don’t have to deal with the process as many times a day: figure out I NEED the nap now (sometimes done by scheduling), getting ready by making sure my clothing was not restricting and blocking out light and noise, taking the rest, getting up and waking up and getting mentally back to where I was. The process, 3-5 times daily, used to consume a lot of my time. It was necessary – it was the critical behavioral technique that allowed me to have a little good time: after each nap, there would be a usable period; before each nap I wasn’t getting anything done anyway.

Exhaustion: I do spend less time feeling so utterly exhausted that I can’t even hold my head up. That is a blessing. Before, I had to manage myself so very carefully with all the behavioral techniques (pacing, resting, watching the energy envelope) that it was almost a full time job, even if it did allow me to function somewhat. But it left little usable time, and I was always frustrated because days slipped by just existing. More people weren’t aware of it because, like all people with this, I mostly stayed home an off the radar.

Coherence: a comparison to my earlier posts should show this (I hope). Some of them I will probably end up using for a book on the subject – and then deleting (or leaving, but noting they are part of a historical record).

In conclusion: will I keep taking B1?

If you ask the people I know, they can all tell the difference. I’m (foolishly?) doing a couple more things than I used to be able to do (going out to lunch with a friend, volunteering for a job with a group I’ve belonged to for a number of years but have never had extra energy to give). I have to watch those – it is good to feel better, but I have my writing to do. But it is also good to give a little, and not just take all the time.

I won’t give up the B1. I wish we knew more about it and how it works – my use has been entirely self-created, and I would love someone in the know to guide me. I am looking forward to possible even better use of me as I learn where my new boundaries are. I hope I can also find other ways to continue to improve.

Yes, I will continue to take it. And I will keep reporting.

If this improvement is all I ever get, I am so happy to have found it.

Comments welcome.

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33 thoughts on “The continuing saga of megadoses of vitamin B1, CFS, and writing

  1. Kecia Sparlin

    Alicia, I’m sure you’ve tried or heard just about everything in your research. I won’t presume to know anything for sure, but wondered if you had experimented with coconut oil for the brain fog. I’ve read and watched videos where coconut oil improved the cognitive function of people with Alzheimer’s and Parkinson’s Disease. (I lost my mom to the first and my dad to the second.) Since there appear to be few to no bad side effects and definitely some good ones, coconut oil might be a helpful (and tasty) additive to your diet.

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    1. Alicia Butcher Ehrhardt Post author

      I used coconut oil as a bit of fat in my protein shakes several times a day. Made not the slightest bit of difference.

      When I finish the heavy cream I have, I’ll try again (already bought it). Things have NOT been going well for a long time. 😦

      But I just keep trying every day, because there are no other options except giving in and giving up, and I won’t.

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  2. Laila

    I suffer from CFS & just came across this article hoping for something to increase my energy levels. I suffered from severe mental exhaustion where i would just fall asleep all the time. I started taking v.high doses of vit b12 in methylcobalamin form which has helped a lot….two of jarrows b12 5,000 mcg tablets sublingually. I had previously tried b complex tablets in high and low doses including time release formulas which never helped. Perhaps you could try this to help with your mental fatigue as your article sounds a lot like what i have been going through. I am going to try adding thiamine & see if that helps further as i still require atleast 10-12hrs of sleep a day & struggle to get out of bed. However the b12 has helped with not falling asleep during the day & needing to nap. I can concentrate more on any work i need to do.

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    1. Alicia Butcher Ehrhardt Post author

      I wish I had a doctor’s help figuring out what works best, but there isn’t a single ME/CFS specialist in the state of NJ that I’d go to, much less someone close.

      I just realized I didn’t even take all my B1 yesterday – took one ‘dose’ instead of the 3 I usually take – and had a very good working day, so I never know exactly what is the right thing to do.

      If I have the nerve, I’ll get off B1 entirely, then try putting it back, and notice whether it really helps – but I’m so erratic in energy and brain fog lately, that I’m not sure I’ll reach the right conclusions!

      I take a single 2500 mcg B12 sublingually right now – Nature’s Bounty – and have no idea whether it really helps, either.

      It may depend more on what stage of my writing I’m at – gathering ideas is much easier than sorting it all out, and then the actual writing is easier again. The sort/organize/figure out what I want to say in a scene, or a group of scenes seems to require the most brainpower – but it’s random how much thinking I have to do to achieve it, and random whether my mood allows me to do it, and whether I can focus.

      Honestly, these books (my main concern in life right now) would have been done years ago if I were my old self. But they wouldn’t be what they are, and I like that.

      Welcome to liebjabberings.

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    1. Alicia Butcher Ehrhardt Post author

      No. Had never heard of it until now. Do you have a good quick reference for it working for CFS?

      I looked it up: a pair of thiamine (B1) molecules held together by a sulphur. Why would that be better than plain thiamine?

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  3. Ali

    I have struggled with low energy since my early teens and I am now in my late fifties. Whilst I didn’t recognise it at the time, the problem was, and probably always has been carb metabolism (I had unstable bloid sugar for years, culminating in Diabetes). I would get so fatigued at times it would take all my willpower not to just lay down in the street…..

    Recently I have learned that I have parasites in my body. Undoubtedly gut-based originally, but at some point they migrated and are now systemic (Ascaris, I believe). I suspect I have had them since a child. Having thrown everything I can think of at them to no avail, apart from drugs as I cannot get anyone in the Medical Profession to believe me, I am now resorting to trying to build up my body’s own defences with nutrition.

    I believe parasites are a far bigger issue than most people realise. Whilst I am aware of mine, most of the time they lurk quietly and insidiously, lowering our energy, adding to toxicity, and hijacking our nutrition. Some experts reckon as much as 90% of the World’s population has some kind/s of parasites.

    What I have also come to understand is that in many areas of the, especially ‘civilised’, World, the ‘sulphur cycle’ has been broken. It is not in Municipal water, bottled highly filtered water has little, if any. Chemical fertilisers propping up exhausted soils provide none in our grown food, and livestock are undoubtedly lacking in it too.

    Thiamin (B1) is a sulphur-based element. Along with Pantothenate (B5), Biotin, L-cysteine, Methionine, Taurine, etc., these elements both provide sulphur but also need to interact with it in the body. Sulphur is, if you like, a foundation element. It has the ability to bind with virtually any other element as needed. It can bind with mercury to help detox it – but – unless we are getting enough, the mercury will stop it in its tracks, binding it up and blocking it’s detox capability.

    Sulphur springs have long been recognised the World over as powerful healing modalities. People who live in areas where sulphur levels are high in the food and water tend to be healthier (Iceland, Sardinia, Caucasus etc). Sulphur and its compatriots are essential elements in the digestive and absorption processes, especially in carbohydrate metabolism.

    I suspect at least part of the reason why some people have to take such high doses of certain elements to get any benefit, is because a) they are not getting enough of the right co-factors (B-vitamins are synergistic for instance, and need all in oder to work properly, vitamin D needs sulphur in order to be converted to D sulphate in the skin – Stephanie Seneff has written a good article in the Weston Price Foundation website on sulphur), but is also down to either an inability to absorb it properly, or because it is being hijacked before we can get it. Mega doses may well work because there is finally enough getting through for the body to use.

    Low doses of Thiamin has actually been found to increase Cancer growth. But higher doses are suppressive. Quite possibly the lower dose is enough to be hijacked by the parasites/fungus/Cancer, but not enough to give the immune system the tools it needs to deal with it/them.

    Nutrients are always synergistic. Nothing works in isolation. A cure is never going to be a mega-dose of any one element, but a combination of nutrients. A mega-dose may suppress symptoms, or improve things – as long as it is being taken, but it is not a cure. That can only come from a combination of sun, diet and supplementation. Finding the right diet and supplementation is the tricky bit. Removing foods that steal more nutrition than they provide, like highly-processed food, grains and nutrient-devoid sugar is a good place to start.

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    1. Alicia Butcher Ehrhardt Post author

      Humans in general are not this complicated – I have a hard time with the idea that I have to spend my life looking for an elusive combination that works for just me.

      I’m grateful I can ignore the disease – and the other problems (walking, back pain) as much as I can. The people who are interested in medical research – and who are not solving many of the world’s big problems – will have to do the studies, because I can’t.

      Good luck with your search.

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  4. portkelly

    i just came across your blog looking for others who have benefited from b1. i do not have cfs/me but celiac d.

    i came in the back door.

    i discovered through a lucky hunch that my exhaustion was from fructose. even small amounts like a piece of bread (gf). it has sucrose of which 50% is fructose. fructose was creating lactic acid so i’d come home and lay down flat on any floor. 24 hours after fructose (via sucrose too) i’d be ok. but this meant that fruit was out. being on a very restricted diet already, this was socially debilitating.

    another hunch lead to another Google search. manganese is the center of 2 enzymes that metabolize fructose. b1 is a manganese co-factor. since Albion manganese is relatively cheap, i increased that from 5mg.d to 20 or 25. it clears easily and its close to food form so really toxicity was not a worry. (rda 11mg)

    celiac guts don’t ever really heal so i’ve discovered other health improvements just by quadrupling my supplement. so then i tried quadrupling the benfotiamine. i gained another notch. now i’m going back to cheap b1 to see if i still get the good results.

    now my muscle tone goes up when i eat a piece of fruit! before it plummeted! and just from quadrupling supplements i was already taking. (i crush all my supplements and mix them in food–always.)

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    1. Alicia Butcher Ehrhardt Post author

      I still use B1 every day – I don’t know what else to try – I eat practically no sugar (try for none). No carbs. Glad the benfotiamine works for you – I use Source Naturals benfotiamine and Solgar B1 – but I really wish I knew what I was doing, and was doing it with proper reasons and medical supervision. Unfortunately, anyone with CFS will tell you – no one KNOWS anything for sure. B1 doesn’t work for everyone.

      Sounds like you should stay away from sugar, especially fruit – but what do I know? Good luck – thanks for stopping by to comment. Wish you success with figuring out what works for you.

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      1. portkelly

        i’ve already mentioned about my b1 experience and the point of my comment got completely missed. so i will make it more clear.

        manganese activates b1. you can increase b1 till the cows come home but if you are marginal on manganese, you won’t notice much of anything.

        if you google the partnership of the two, you really won’t find anything unless you also include myasthenia gravis. you’all should know that tons of diseases are actually just variations of deficiencies whether by snps or otherwise. in the case of m. gravis, its manganese and b1, keeping it simple.

        i had already been taking manganese for 20 years. when i increased it to 25-30 mg/d i activated the thiamin like it hadn’t been before. i get obvious psycho-motor results which told me it got to my brain too. i got more energy and muscle tone instantly.

        the point is to get the activating mineral at the same time as the co-factor.

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        1. Alicia Butcher Ehrhardt Post author

          You’re right – I did miss the manganese – for some reason my brain read ‘magnesium’ for ‘manganese’ – and, since I already get plenty of extra magnesium, I didn’t SEE what you said. I will check out whether I’m getting enough MANGANESE. Thanks for following up – it would be neat to make the B1 work better. BUT I get very little fructose in my diet, so I don’t have to metabolize it (though had some strawberries – low carb fruit – today)

          Checked: 2.3 mg Manganese – I’ll get some extra at the health food store – see if it helps. How soon did you see results?

          CAUTION: manganese in larger quantities is TOXIC, and leads to manganism – an irreversible neurological disease of miners and welders. I have found nothing similar for B1. I think I need to do a lot more research before putting large quantities (relatively speaking) of manganese into an already weakened system. If you have an actual manganese deficiency, which may be the case, then you need more, but I was thinking about hoofing it down to the health food store, and now I’m going to think about it and do more research instead. It may still be a good idea, but manganism is a disease of excess manganese, not a deficiency disease (as beri beri is a deficiency of thiamine (B1)).

          In the same way taking an excess of water-soluble vitamins MAY be relatively safe because the body excretes the amount it doesn’t use relatively easily, but taking an excess of fat-soluble vitamins (A, D, E, others) can be dangerous because the excess is NOT excreted but stored in the body’s fat tissues.

          Portkelly: have you run this past your doctors? The part about the extreme difference in muscle tone that you mention should be of interest to them. I say ‘should’ rather than ‘will’ because my experience with the medical profession, after almost 25 years with CFS, is that they have no idea.

          Be safe – do your research – watch for adverse effects – and realize that they may be subtle and long-term rather than immediate and obvious, like in the case of the miners and the welders (about which I know only what popped up in Wikipedia and a quick Google search).

          AS USUAL, there is NO data on how much manganese is toxic – and whether it has anything to do with being breathed in or eaten. Each article out there repeats the same ‘information’ as if it were gospel truth. I wonder how much manganese it at the core of the miner’s and welder’s disease – because that information is not out there. At least not where I could find any unequivocal studies. There are warnings about manganese being removed by the liver, so, if you have a compromised liver, I would be more wary. There could be a huge gap between what Portkelly is taking (25-30 mg) and the amount that a welder gets (the amount welders can legally be exposed to per cubic meter of air has been reduced several orders of magnitude from what they used to breathe) before experiencing symptoms. Ditto miners.

          I’M declaring curiosity and ignorance on this one for me, for now. If I get desperate enough (I don’t have the muscle tone problem), I might see if a short trial increases my functionality, but I can’t afford to do anything that might keep me from writing until I’m finished.

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        2. portkelly

          the results of muscle tone came within minutes. it was startling! i had been taking about 5 mg Mn.or less per day crushed. it is close to food source–albion’s bisglycinate. that did nothing for me. i was always a bit concerned about stressing out my kidneys or something. i’ve known for years that toxicity is not a significant concern with albion chelates yet i was being cautious. but recently i read that the body clears mang. easily.

          when i did the experiment, i just literally ate 5×5 mg caplets of manganese bisglycinate and i figured i’d splurge and take about 3×80 mg capsules of benfotiamine. its likely i just put it down with some white tea that time.

          i had been lying down with low muscle tone–completely frustrated that a simple snack of one or two fruits would put me out of commission for a full 24 hours.

          the result was rapid. i soon experimented with another piece of fruit with a luxury dose of manganese and benfotiamine with the same results. before this, small amounts of sugar would make me so drowsy i crashed my car once. i could be up for 24 hours or more no problem but give me some sugar and i couldn’t stay alert.

          i’ve learned some odd tricks to fix myself but this one was unusual because it simply involved taking more. should mention that i take chromium avec vanadium with large carb meals. also take borax daily. over the years i’ve tried different things and they only worked trying it years later after i’d started some other co-factors.

          odd thing too, this duo has for some reason let me quit dairy no problem. before that i’d feel somewhat beside myself and head achy if i tried not using dairy. now it is optional. dairy is hard on my parathyroid so i’m happier without it. and the casein is psychoactive for me.

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        3. rose

          Hi portkelly, please could you say more about this and your experience? I have discovered the protocols by Walter Last/Dr Josephson and Dr Klenner, I assume this is what you’re referring to – interesting that Dr Klenner didn’t mention manganese and Dr Josephson if I remember rightly (it’s been a while) didn’t emphasise B1. Feels good to join the dots. Do you know how much of each to take? If you have any more info or links etc I’d be v grateful. Thank you.

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        4. Alicia Butcher Ehrhardt Post author

          I just looked up this whole exchange between portkelly and me – thanks for commenting. I hadn’t revisited this in a while.

          I always meant to get some manganese and try it. portkelly didn’t come back after, so I’ll have to look her/him? up, too.

          And I will update my B1 information with what I find, if anything useful. If I do, I’ll drop you a line.

          Alicia

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        5. Alicia Butcher Ehrhardt Post author

          Thanks. I have. But it appears to be a pain solution, and I have something that works; don’t want to mess with it.

          I’d do just about anything for some cognitive improvement and less fatigue, though, but I don’t think it is good for either.

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        6. rose

          I get the impression it helps with all kinds of things. I’ve posted a question on a FB group, will pass on any feedback. A couple of people have said it helps them but weren’t specific. Someone else said it helps her fatigue and cognitive ability, but she doesn’t have CFS. There are some interviews with people taking it for CFS here: https://vimeo.com/ldnresearchtrust/videos/search:CFS/sort:date
          One thing I do know re LDN and CFS is you have to start v low and slow with the dosage, more so than with other conditions.

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      2. Cam

        Hi Alicia,

        I’m pretty new to B1, but I was getting some from B-complex, and food of course. I have some Jarrow’s methyl ‘chewies’ coming with B12/B6(p5p)/Folate and a separate 500mg B1. Only problem is – the B1 I ordered looks to be mononitrate, as opposed to hydrochloride, or any other B1 type. Perhaps I will need to go with the HCL or the more expensive types in the future. Both mononitrate and HCL appear to be synthetic and fat soluble, unless I have it wrong. I’m thinking this actually could be an advantage for it’s lingering effect, although, ultimately harder on the liver and kidneys long term. Have you experimented with all the B1 types? It’s all a tad confusing.

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        1. Alicia Butcher Ehrhardt Post author

          It would be nice if the research were being done in a controlled manner, but B1 is too inexpensive and not patentable.

          I’m accidentally running an experiment: due to being in the hospital, I haven’t had any B1 for almost a week now; I will be careful to note changes in energy when I go back on it.

          The problem is that I know I will be crashed from this hospital experience, possibly for a long time, as they did a stress test and stressed the heck out of me psychologically, so it will be hard to get back to a baseline to experiment on the B1 from. I’ll post more when I know.

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    1. ABE Post author

      Still using it daily – no plans to change for now. It is a daily struggle to USE the good time – the world tends to interfere – but I still get it, and the 3pm dose makes the rest of the day better.

      Do your research, see how it works for you – and best of luck. this is a ‘luck’ one.

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        1. ABE Post author

          I haven’t seen any mention of buildup, not even on the benfotiamine.org website. If you do find anything useful, feel free to post that here.

          benfotiamine.org has some information links, and claims it is LESS toxic than the water-soluble regular B1.

          It’s a good thing to think about in general, but ‘fat-soluble’ does not necessarily mean ‘builds up in fatty tissue,’ though it could (we worry about overusing Vitamin D, for example – but I take 2 1000 mg D3 capsules in the winter – maybe is you use it up?).

          You’ve reminded me I was originally thinking about reducing the TOTAL B1 by switching to using benfotiamine (which some people say is more bio-available) in smaller quantities. I will still consider that, next time I’m wondering if I can fine-tune the effect I get. I’d had good results with B1 alone, and better results when I ADDED benfotiamine – I just haven’t completed the final step. I hate messing with things that work, but I really should pursue the optimum combination – if it isn’t where I’m at: 2600mg total is a lot. If the stuff were more expensive, I probably already would have taken this final step.

          Let me know how much and in what combination you end up at, if it works for you.

          Note: the mayoclinic website was no help in this. Their description of B1 is bare, and doesn’t include any separate information on benfotiamine except that it exists, as a ‘related term.’

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    1. ABE Post author

      I am trying desperately to learn to USE the extra energy – I wish my bad habits didn’t come with a sense of entitlement: poor me, I’m disabled – I should just be allowed to fritter away my time.

      20% isn’t enough – but it’s a lot more than many of us get. The difference from being AWAKE a significantly larger part of the day is quite noticeable. I wish I knew how to keep improving from here, but I don’t think that’s how it works. The B1, when it works, is a stopgap measure, not a cure.

      I promise to buckle down after my birthday picnic!

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  5. Circe

    This is the second time this week that vitamin B has been recommended to me directly, and now indirectly. I have terrible joint pain, but do not have RA, osteoarthritis, Lupus, Lyme’s and–hard to diagnose–probably not fibromyalgia. Because I also have colitis, I can take no NSAIDS: no Advil, no Celebrex, etc. This results in the old cycle of very little sleep due to pain, and all the things that go along with not sleeping enough. (NowI am starting to feel whiny, and need to get over that, so maybe someone can rank my comment on the whiny/informative/factual scale?)
    So, experimenting with vitamins is just what I should do. Why did you both decide on B1 alone, and not a B-complex?
    I am several decades away from the age at which my grandmother (adopted grandmother) and biological father began receiving vitamin B12 shots, nor have they been recommended to me.

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    1. ABE Post author

      What is interesting to me is that the initial study where the effect was noticed came from studying patients with Ulcerative Colitis who were taking megadoses of B1 for the UC – how they got to that point, I haven’t followed up on, since I don’t have it.

      It means two things, though: it is probably safe for people with UC to try, and if fragile people with UC can take it safely, it should be relatively safe for other people it might help.

      The main problem with ‘non-standard’ therapies is that there are so many of them, and we don’t know how they work. There are probably twenty things out there that would help me a bit – but I’m not going to go try them. No scientific data. I’m surprised at myself for trying THIS one – and amazed that it works at all.

      I AM trying a complex – for part of the benfotiamine, I take ‘Multi B neuropathy support formula’ because I bought it for husband, and he didn’t find it useful. I can’t say that there’s anything special for ME about using part of that for a couple days. When the bottle is used up (it contains the same amount of benfotiamine per capsule as their plain benfotiamine capsules), I will decide if I think I’m getting any extra effect – and blog (blab) about it. Nothing so far compared to the huge increase I got from the right dose of B1, and the pain relief from adding the fat-soluble B! (benfotiamine) to that combination.

      How can you truly experiment when you don’t know what you’re doing? I worry about that.

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  6. Tamara Staples

    I have still not moved beyond the 500/150 in the AM and 500/150 afternoon. I am thinking that I need to add a third dose…maybe of just the benfotiamine? I definitely have more energy. If I don’t burn through my energy physically then a couple days later my brain will start working. However, it is hard not to burn through the energy physically as I am so depleted. I am at about 20-25 on the cfidsselfhelp scale. A reminder that I weigh about 95 lbs.

    I also started Sarah Myhill’s program to feed my mitochondria at about the same time as the B1, so I can’t swear for sure how much each one is having an affect.

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    1. ABE Post author

      I have moved a third dose of just 150 mg. of benfotiamine from 8 pm to 10 pm to midnight – when and if I figure it out, and I have a consistent result, I’ll post the information in a future update.

      It’s tricky getting good data – last night was horrible – twitchy legs, couldn’t sleep – but I discovered this morning I had missed last night’s Celebrex (pain), and calcium and magnesium (muscle spasms). It’s always something!

      Your dose sounds fine at your weight – without research and medical input and a way to measure the effect, we’re flying blind. Fortunately, B1 is easy to obtain, inexpensive, and doesn’t require a prescription, so we can experiment a bit. Keep me posted.

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