Taking B1 for ME/CFS: consider the writer’s source

This is an update of my experiment with taking vitamin B1 to improve some of the symptoms of fatigue, brain fog, and pain that goes along with my CFS (ME). I promised to report, and I will do these updates until I’m so stable it’s boring, or I decide it isn’t working and stop taking it.

Something odd has happened. I got a lot worse again, and was wondering whether B1 was working, and what was going on. I figured SOMETHING out, and it may be significant, so I’m going to report on it for now – and update as I find out more.

****If you are taking or considering taking B1 for CFS or FM, PLEASE remember I’m only a single individual (long term CFS – 24 years), but I have an outlet, so I write about it. I have NO medical training – the ‘Dr.’ is Nuclear Engineering (fusion – plasma physics), not medicine. IT IS ALL ANECDOTAL, but I keep fairly complete records for my own purposes. Read my other posts, read widely, talk to trusted medical professionals, make your own decisions.****

On to the report:

A while back I changed my source of benfotiamine to an online supplier and a different brand. I figured a regular supply would be necessary, and it was cheaper to get it that way.

Then, some time after that (and partly because I changed over gradually, not wanting to go from all one brand to all another), I started noticing that I was having a lot of muscular and low back pain – again. And the brain fog was back. I was still getting through days with far fewer naps, BUT I wasn’t getting my writing done because I couldn’t focus. And my eyelids weren’t getting heavy the same way at night making it easy to fall asleep. Bummer.

When your brain isn’t working, it takes longer to notice these things!

This made me wonder if the B1 wasn’t working for me. Some people have reported that it worked for a while, and then stopped working, and I’ve always been afraid that would happen to me.

I don’t know why the thought came into my mind three days ago that I hadn’t considered the SOURCE, and that it was worth the last ditch effort (and a FEW more bucks) to go back to what I started with, which happened to be benfotiamine from Source Naturals from my local health food store.

It worked! I’m back to where I was.

The next morning I woke up better, and the ‘heavy eyelid’ thing worked somewhat better.

My notes say:

Far less pain this morning – and even yesterday, the ‘excruciating’ edge on the pain was missing.

Looking back, It has been as if I WASN’T taking the extra B1 in the benfotiamine.

Rather than cast aspersions, I’ll just say that the Source Naturals benfotiamine WORKED FOR ME, and what I was taking that I got online DIDN’T.

I won’t take that chance again.

Yesterday:

I woke up at 10 – after a full 7 hours’ sleep feeling GOOD again.

I had dreams again, dreams I woke up remembering. I love dreaming and remembering. It came when I first started taking either the B1 or the benfotiamine or the right doses – and had been lost.

It took  2 hours to stop surfing the net (my usual time-waster-while-I’m-waiting-for-my-brain-to-kick-in), but they were somehow ‘different’ hours. I haven’t been dragging myself up from the depths during that whole time, forcing myself to try to work; no, I was doing ‘useful’ surfing, handling some paperwork, etc..

I wasn’t desperately looking for something to read (an indicator that my brain is on, but just barely).

The pain from yoga is there (we did a LOT of plank poses), but it is the manageable sore Friday usually has.

I haven’t gotten too distracted by sudoku or Bee Cells or the new book by Janice Hardy in the bathroom.

I’m ME, if that makes sense.

I want to write – but I wanted more to make these notes before plugging in.

I set up Freedom for three hours – to just after 3pm – to get a few other things done. It wasn’t too hard. Setting Freedom up is USUALLY a decision that is hard to make. I debugged a password problem easily (ALL CAPS on), instead of freaking out.

I went  out for a walk. It was a beautiful day out there.

I spent time SEWING yesterday, for Pete’s sake! I finally got the elastic onto the edge of sheets I  washed the same day.

I haven’t had that kind of ‘spare’ energy in ages.

Conclusions?

I thought the B1 wasn’t working – but apparently what wasn’t working was the wrong benfotiamine brand for me.

I am truly scared: what if the precise brand is the key?

And we’re back to: How do I know if I’m taking the right dose? And at the right times?

Living in a human body, and having to function with a human brain as your only resource, is the scariest thing on the planet: and you get no choice. You are what you are. The complicated biochemistry of a system with innumerable moving parts is overwhelming – and deterministic: how you feel affects how you think, and how you think affects what you think, and how you use what you think.

It is amazingly complicated: getting the system tuned to perfection so I can write every day is as complicated as a space launch, and just as likely to be scrubbed – by weather, by a phone call indicating a hold for any number of reasons, by a bird.

And I have been so tired and so brain-fogged that even writing the above words has been impossible.

But yesterday was better – and today the same – for what may be a random piece of luck: the first benfotiamine I tried, and that I had such success with, was the right one for me.

I still can’t believe how the other one took me back to the depths of pain I’d been having before I started it, a deep scary pain in the ‘universal joint’ section of my body: the lower spine/hip region where I sit from, and stand from, and walk from. A pain that says ‘something is wrong, and you will only aggravate it by walking.’ A pain that tells you you will do DAMAGE to yourself if you keep up the moving, that something on your spine has developed a bone spur or such and is about to sever your spine. THAT kind of pain.

I’m writing this to PRESERVE the information. And the feeling.

I still don’t know if it’s real, or related to the source of the vitamin.

I am reluctant to do the proper experiment: switch again, and see what happens – because it takes days off my life and my writing life to try.

It could STILL be luck.

Or something entirely different.

But the SPEED of the reaction, the fact that things got better INSTANTLY when I switched benfotiamine sources, is telling.

Comments welcome.

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6 thoughts on “Taking B1 for ME/CFS: consider the writer’s source

  1. Carmel

    Found your blog after reading Yuvi’s response to your comment on Writer Unboxed. Have you tried taking turmeric? (I like India Organic’s turmeric.) It’s really helping me and some other people I know.

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    1. ABE Post author

      On my list of things to try – some day. Unfortunately, each trial of something is a fairly large commitment of available energy, so I don’t try too many things. I’m waiting for ‘them’ to figure it out – eventually they figured out AIDS.

      I’ve seen turmeric mentioned – with details how to buy and use – on Health Rising. I have a strong problem with odors – things don’t saturate, so if they have any odor, I can’t get rid of it, and I get a headache. I’ll see if it says that if you take it in capsules it DOESN’T come out your pores (as garlic does). The system has to get rid of things somehow – my ability to do so is limited. I can’t drink, for example: no capacity to process alcohol – so it stays in my bloodstream for too long and makes me feel sick.

      I hope I’m still around and can benefit when someone really figures this out. I don’t really like being a pioneer. 🙂

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  2. Rachel6

    I’m so glad you’re doing better! Astonishing how quickly the dose worked, and delightful how fantastically it improves your life.

    Which Janice Hardy book? I owe you a long email 🙂

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  3. Helen

    This is so interesting – I tried B1 but it didn’t work… so now of course I am wondering if it is simply I tried the wrong brand?!
    But I am trying other things right now so it will have to wait – you so nailed it with those 2 paragraphs starting “Living in a human body…” In fact I am going to steal them for my fb page (I’ll put a link to your blog) if that is ok?
    I am so so so glad it is working for you and hope it continues and continues to get better for a very long time to come. x

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    1. ABE Post author

      You’re welcome to quote me – just indicate it’s a quote, and link to the blog, and we’re good. Glad you liked it.

      I wish I knew what I was doing: I’m petrified of losing the gains I have made – and wishing I knew what to do (low-dose naltrexone?) next. I tried the B1 because it was easy to try. I never expected it to work. Now I don’t know what to make of it.

      Life is too complicated – and I feel I am contributing nothing to make the world better because I have such sporadic energy I’m not useful as a volunteer (they’d fire me).

      I hope the things you’re trying work for you – and you write about it.

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