Significant Improvement Story -- Focus on Thiamine Deficiency

[Dreambirdie]

Cort has just posted on this on Health Rising - haven't read it yet.

"Side effects consisted of tachycardia and insomnia in a few patients which disappeared when the dose was lowered."


This concerns me. I have a tendency towards both. So I will have to wait and see how everyone else does with it.

 

[Sushi]

"Side effects consisted of tachycardia and insomnia in a few patients which disappeared when the dose was lowered."


This concerns me. I have a tendency towards both. So I will have to wait and see how everyone else does with it.

Me too!
Sushi

 

[Sasha]

"Side effects consisted of tachycardia and insomnia in a few patients which disappeared when the dose was lowered."


This concerns me. I have a tendency towards both. So I will have to wait and see how everyone else does with it.

They seem to have gone in for fairly heroic titration! Maybe side effects are unlikely to get out of hand if you go up more slowly but I can understand your caution.

I've ordered the Source Naturals coenzymated stuff but I'm still waiting for them to respond to my question about dose equivalency. Oh! It was just the 4th of July, though - is that a public holiday in the US? Will the office have been closed yesterday?

 

[A.B.]

Thiamine and Fatigue in Inflammatory Bowel Diseases: An Open-label Pilot Study.

Another study by the same doctor which talks about complete remission of fatigue in 10 out of 12 patients after 20 days of high dose thiamine therapy. Patients had normal thiamine blood levels before the start of the therapy.

 

[Dreambirdie]

I just wonder, tho, what LONG TERM effects taking high dose B1 has on the levels (in the blood) of all the other B vitamins? What kind of imbalances might that cause after a few months or years?

dannybex What do you know about this? You've been particularly interested in getting the right B complex, with the right amounts of each of the Bs....correct? So how do you balance that out with the additional B1?

 

[Dreambirdie]

Also... I don't want to burst anyone's bubble, but I think it's good idea to have a bit of a reality check when it comes to single vitamin cure-alls. I have been disappointed SO MANY TIMES by SO MANY THINGS that sounded so good, and panned out to be total duds in the end.

Remember "Dog Person" and the "B2--I lLOVE YOU!" thread. http://forums.phoenixrising.me/index.php?threads/b2-i-love-you.15209/ B2 came on the scene like gangbusters about a year and half ago. Lots of people became very excited about it, quickly jumped on the B2 bandwagon and claimed it was helping them get excellent sleep, giving them energy, pulling excess iron out of their cells, and doing all kinds of marvelous things for their health. It was the miracle cure of the moment at that time. Then before long, B2 wasn't enough and soon it turned into a B2 + manganese fad. Then, after a few months, that also failed to impress anymore, and B2 was dead in the water.

Just saying.... It might be a good idea to include some healthy skepticism in the mix. Who knows how B1 will pan out in the bigger picture and in the long run. Maybe good... maybe not? Don't count your B vitamins until they've hatched.

 

[Sasha]

I had a great response with adenosylcobalamin (a particular version of b12) at the beginning of an attempt at the methylation protocol for a few days which promptly wore off and ended up fuelling a never-ending electrolyte (or something) deficiency (or something) not once but three times as I struggled to identify the culprit (still haven't).

I agree, it's good not to get too carried away with initial success but it's hard not to...

 

[dannybex]

I just wonder, tho, what LONG TERM effects taking high dose B1 has on the levels (in the blood) of all the other B vitamins? What kind of imbalances might that cause after a few months or years?

dannybex What do you know about this? You've been particularly interested in getting the right B complex, with the right amounts of each of the Bs....correct? So how do you balance that out with the additional B1?

I dunno. Certainly it's probably not a good idea to just take huge doses of one b, without throwing in some of the others, and yes, the "Dog Person" fiasco is a perfect example of that (and she was having us take just RDA amounts, assuming everyone's absorption levels were perfect, but don't get me started...).

I did start a thread a month or so back that suggested that thiamine may share a 'transporter' with folate, which I found interesting because so many folks were/are taking huge doses of folate. Maybe that was blocking/lowering thiamine?

Also, I did an Organics Acids Test, which hasn't been interpreted yet, but it showed high pantothenic acid levels -- something I never take (except perhaps maybe a dozen times as part of a thorne b-complex, but in tiny, tiny amounts). When I had a hair test done in 2011, the person who analyzed that said I was in adrenal burnout (as opposed to adrenal insufficiency) where one is still putting out too much cortisol at times, so she advised me to avoid pantothenic acid because it would supposedly just make things worse for those with 'burnout'.

Anyway, the OAT says that my pantothenic acid is HIGH. ??? Is this because my cortisol is high at times? I have no idea, but am waiting in line to have the thing analyzed. Very frustrating and complex..........

 

[Wayne]

Preliminary Report

I bought some NOW brand B-1 100 mg yesterday, and took 300 mg right away. It made me slightly nauseous, but I was able to get beyond that by eating until the nausea went away. So even though it was a water soluble form, it might be best to supplement with meals instead of taking it on an empty stomach.

I slept longer than normal for my afternoon nap, and woke up with a bit of an unusual headache. But I then proceeded to have a better than normal evening, feeling a bit more relaxed than normal. Slept in this morning, which is very unusual, and have been trying to pull out of my "sleep in funk" ever since. We'll see how it goes.

Another Report -- In the Following Two Days From Above Report

I took 100 mg yesterday, and 100 mg again this morning. I'm essentially having the same effect, except somewhat ameliorated by taking a lesser amount. After take the 100 mg this morning, I felt slightly nauseous within minutes, got quite drowsy and slept for an hour or so. When I got up, I had the energy to vacuum the floors for a few minutes. But I still feel a bit "odd".

I'm guessing at this time that there's something here for me, but perhaps not significant. I'm going to continue to experiment with dosages (going down from here), and even perhaps try a different brand. I'll probably also incorporate taking more biotin at some point, but will stick with thiamine for now.

 

[Wayne]

I read the blog on Wednesday. I bought some 300 mg tablets of B-1 yesterday and took one. It was the best day I have had in years.

I found myself standing at the counter while making dinner and looking things up on my computer. My husband said "Are you standing while browsing?" I said, I guess I am (standing is not usually my best thing). We then talked about the last time he had seen me with so much energy. He said 1996. It teared me up a bit.

I'm only on day 2 so I can't tell you that it will keep working or if it will plateau and no longer help. But I am very optimistic. Hard to believe 17 years of my life could be gone due to a vitamin deficiency. But wouldn't it be grand to finally have an answer?

Lynn

Hi Lynn, thanks so much for your report, and congratulations on getting such great results. What seems clear to me is that there's going to be a least a certain percentage of people diagnosed with CFS whose main problem is a thiamine deficiency. Whether that's 2%, or 20%, or some other percentage remains to be seen.

 

[Sparki]

Hi, This article is really interesting. I scanned the article and I didn't notice if the patients had low B1 levels. Do you know if you need to be deficient to see an improvement?

Thanks,

Sparki

 

[shannah]

"Interestingly, when given a blood test, many of the people in these studies had
normal blood concentrations of thiamine, yet they experienced significant
symptom improvement when taking high doses of thiamine. The study authors
speculate that this "may indicate a dysfunction of intracellular thiamine
transport or structural enzymatic abnormalities.""


Report at
http://www.prohealth.com/library/showArticle.cfm?libID=18187&t=#discuss

 

[Lynn]

I overdid it yesterday because I felt so good and today I have the usual PEM which will probably linger into tomorrow. I am going to "heroically" up the dose to 600 mg tomorrow. I'll post on the results of that in the next few days.

I do want to note that I am usually a very infrequent poster because it takes so much energy to write what I feel. That seems to have changed.

We'll see.

Lynn

 

[Little Bluestem]

I am taking about 5 mg B1/day as a result of my correspondence with Dog Person. That means that my 250 mg tablets last well over a month. I think I will start gradually increasing the dose.

If a person is deficient, it would take a higher dose to correct the deficiency. I would then think that the dose should be reduced to maintain the desired level.

 

[Asklipia]

Remember "Dog Person" and the "B2--I lLOVE YOU!" thread. http://forums.phoenixrising.me/index.php?threads/b2-i-love-you.15209/ B2 came on the scene like gangbusters about a year and half ago. Lots of people became very excited about it, quickly jumped on the B2 bandwagon and claimed it was helping them get excellent sleep, giving them energy, pulling excess iron out of their cells, and doing all kinds of marvelous things for their health. It was the miracle cure of the moment at that time. Then before long, B2 wasn't enough and soon it turned into a B2 + manganese fad. Then, after a few months, that also failed to impress anymore, and B2 was dead in the water.

I am sorry but I have to disagree. B2 + manganese helped us both to overcome the last problems we had.
There might me reasons, environmental most probably, why it did not work for others, or so you say. It did work for both of us, with probably different epigenetic situations. But eating the same food and living the same life.

If it did not work for you, there is no reason why it should not work for some others!
I cannot allow people to describe the B2 + manganese experiment as a fiasco since, for reasons I ignore, it has been a success FOR BOTH OF US (husband & wife).

Good luck with B1 - which as far as I know is a sympathetic NS booster. Working with B2 to boost the parasympathetic allowed us to rest. Sometimes it is better to work on the opposite side.
Lots of good wishes,
Asklipia

 

[Dreambirdie]

Hello Asklipia --I'm glad the B2 worked well for you and your husband. You are among the few who had good results with it. There were a bunch of us in a B2/manganese Facebook group (that had originated from people here on PR), who attempted Dog Person's protocol and had either no results or bad results. In my case, both the B2 and the manganese made me feel significantly worse. The B2 did not relax me or help me sleep. It made me more wired and very toxic. The symptoms I got from taking manganese, (nausea, dizziness and severe heart palpitations), were especially bad.

And btw, the words I used were "B2 + manganese fad." "Fiasco" was your choice of word. Like many protocols that come and go in and out of favor with patients, B2 + manganese was just one in a big long line. It was not a cure all. It was an experiment with mixed results. This is why I encourage people to have realistic expectations and include a healthy dose of skepticism, when trying out the B1.

 

[A.B.]

A 'realistic and skeptical' expectation, or whatever that means for the person, is still an expectation which colors perception. The best would be to be as detached as possible from the experience and to follow the indicated therapy as closely as possible (specifically taking a high dose, ie. 600mg). Speaking of that, my initial goal of one week is too short. It probably should be at least three weeks which, given my initial positive response, I feel comfortable with.

 

[determined]

Perhaps another strategy is "go the other way," and instead of taking huge doses of thiamine, try taking homeopathic doses. Energy-wise, I am still doing very well on my diluted-speck-doses of methylcobalamin and methylfolate. I now take all my vitamins using this strategy. While I don't consider myself cured of CFS, my improvements have been sustained for 2.5 years now.

 

[Wayne]

Perhaps another strategy is "go the other way," and instead of taking huge doses of thiamine, try taking homeopathic doses. Energy-wise, I am still doing very well on my diluted-speck-doses of methylcobalamin and methylfolate. I now take all my vitamins using this strategy. While I don't consider myself cured of CFS, my improvements have been sustained for 2.5 years now.

Hi Determined,

Thanks for your post. I've not heard of taking vitamins in the way you describe. If you've posted on this elsewhere, I'd be interested in checking it out. Thanks so much. --- And congratulations on your improvements!

 

[Dreambirdie]

Perhaps another strategy is "go the other way," and instead of taking huge doses of thiamine, try taking homeopathic doses. Energy-wise, I am still doing very well on my diluted-speck-doses of methylcobalamin and methylfolate. I now take all my vitamins using this strategy. While I don't consider myself cured of CFS, my improvements have been sustained for 2.5 years now.

Smaller doses are always a good idea for me too. After 3 years, I'm still taking just micro doses of HB12 alternating with MB12, sometimes with long breaks in between. Having a lot of toxic metals in my system, I can't tolerate big doses of anything that might cause overwhelming detoxification symptoms.