Significant Improvement Story -- Focus on Thiamine Deficiency

dannybex

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Dreambirdie -- I was diagnosed as thiamine deficient very early on -- 12+ years ago. I don't know if I am now, but I assume so, mainly because of my inability to produce stomach acid, and the need for less HCL since starting the thiamine. Also, I've been eating waaaaay too much white rice over the years, something that depletes thiamine big time. I ate brown rice as well, but mostly white...am now trying other things. Hindsight is always...you know...

That's a good sign that you were able to tolerate it! :)

As for Wahl's diet -- it's great that it worked for her, but she must have had the right bacteria, etc., in order to handle all those high, high oxalate foods she was insisting everyone eat (or drink). ???

edit: I've been taking 3 or 4 a day, but then cut back, due to budgetary constraints. :(
 

globalpilot

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There is a test for thiamine deficiency (functional) called the transketolase test. King James Laboratory does it - there may be others I'm not sure.
I met a woman online years ago with CFS who developed edema. For some reason, this led her doctor to test for functional B1 deficiency via the above test. She had it and injections took away her fatigue (supplements did not). I had the test done myself after hearing her story and was able to rule it out for myself.

A very worthwhile test to do.
 

Dreambirdie

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Dreambirdie -- I was diagnosed as thiamine deficient very early on -- 12+ years ago. I don't know if I am now, but I assume so, mainly because of my inability to produce stomach acid, and the need for less HCL since starting the thiamine. Also, I've been eating waaaaay too much white rice over the years, something that depletes thiamine big time. I ate brown rice as well, but mostly white...am now trying other things. Hindsight is always...you know...

That's a good sign that you were able to tolerate it! :)

As for Wahl's diet -- it's great that it worked for her, but she must have had the right bacteria, etc., in order to handle all those high, high oxalate foods she was insisting everyone eat (or drink). ???

edit: I've been taking 3 or 4 a day, but then cut back, due to budgetary constraints. :(

VERY interesting, Mr Dan. :nerd:

I, too, ate a lot of white (basmati) rice back in the 90s... and I also had issues with insufficient stomach acid (which caused fermentation in my gut, severe migraines and vomiting for nearly 10 years). I began taking Betaine HCl in 97, and it instantly changed my digestion for the better and completely eliminated my migraines. At this point, I have enough stomach acid, and can't tolerate any Betaine HCl. It gives bad heartburn. So maybe thiamine is not an issue for me... ???

I agree that the Wahl's diet is excessive when it comes to how many vegetables (especially greens!) she recommends eating each day. I can tolerate a lot of collards and kale, but I can't eat a mountain on a daily basis. It's just too much. The general principles, though, have worked well for me. I eat a modified paleo diet, with some grains and potatos, and even a little dairy, and I do well with that.

Keep me posted on how you do with the thiamine. I'm particularly interested in knowing if there are any gnarly and nasty DETOX effects. As you know, several supps (manganese, B2, methylB12, folate, TMG, molybdenum, zinc and others) have brought that on for me. I'm not in the mood to experiment anymore with anything that can throw me into another detoxification tailspin.

Good luck with it! I hope it helps.
 

Sasha

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Thanks, Danny - that's a titchy dose but I wonder if a smaller dose sublingually is equivalent to a larger dose of a tablet that you swallow?

I've emailed Source Naturals with this question - I'll post here if they answer.
 

alex3619

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I first read about ME and thiamine in about 1990, in Charles Shepherd's book Living with M.E. iirc. A patient started taking lots of thiamine and got better. Its been a long time since I read it though.

My protocol in 1998-9 had 200mg of thiamine in it. This was the protocol that restored much of my energy before the side effects kicked in (including severe headaches), but didn't really touch fatigue. I was going to start testing thiamine again a while back, along with adenosyl cobalamin, but wound up in hospital instead.
 

LaurieL

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I would like to contribute my experience with thiamine. I take it everyday day since starting the methylation protocol and finding I could not tolerate B-complexes. It was another vitamin in which I found I could not do without. Looking at my bottle, it is only a mere 100mgs. My whole purpose mirrors what danny said about gut bacteria, either the imbalance caused by the bacteria, their ability to steal it, or the complete lack of bacteria that synthesize it, led me to splitting the B complex main contributors associated with gut bacteria, into single, controlled doses.

As far as water soluble versus fat soluble. My thinking is that dont most of us have a fatty acid issue? In light of this, I have heard that fat soluble would not then be tolerated by individuals with problems in fatty acid transport. Add in mitochondrial issues, and there is reason number two for me. And the reason I chose water soluble over the Benfotamine. I am all for the bioactive vitamins on most, but this is one in which I have not needed bioactive. Just food for thought if you are interested.

LaurieL

I wanted to add this, as I think it could be important in consideration. I also thought many of us have phosphate problems?

Thiamine is released by the action of phosphatase and pyrophosphatase in the upper small intestine. At low concentrations the process is carrier mediated and at higher concentrations, absorption occurs via passive diffusion. Active transport is greatest in the jejunum and ileum (it is inhibited by alcohol consumption and by folic deficiency).

The majority of thiamine in serum is bound to proteins, mainly albumin. Uptake of thiamine by cells of the blood and other tissues occurs via active transport and passive diffusion. About 80% of intracellular thiamine is phosphorylated and most is bound to proteins. Thiamine and its acid metabolites (2-methyl-4-amino-5-pyrimidine carboxylic acid, 4-methyl-thiazole-5-acetic acid and thiamine acetic acid) are excreted principally in the urine. Thiamine is mainly the transport form of the vitamin, while the active forms are phosphorylated thiamine derivatives.

pathman
 
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Interesting. I was found B1 deficient (serum test, not functional) last summer and have been supplementing since. Now that I think about it, I don't think I've ever been re-tested to see if my serum level is up.. And I'm only taking 100mg/day. I'll experiment with higher doses. Unlikely to hurt/might help!
 

Wayne

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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.

As I was reading the posts on this thread this morning, I remembered a post on the ProHealth board a couple years ago by a man who had gotten significant improvement from taking biotin [that post is no longer there]. I was so impressed by it, that I copied and pasted it here on this forum. Just read it again, and was again impressed by how a single nutrient can have such profound implications for some pwCFS. Interesting how it so often revolves around proper B-vitamin absorption and/or synthesis in the gut, implicating a dysfunctional environment in the GI tract. --- Anyway, here's that Biotin testimonial for anybody who might be interested
After 30 years, I have finally regained my energy. I have tried many things and everything helped somewhat but this was dramatic and almost immediate and a godsend. My office had moved last summer after 20 years; I work for FDA and now have a much longer commute and work in a huge complex where I have a to walk a 1/4 mile to my office and another to the cafeteria. I was having trouble and was looking to transfer even though I really liked my job.

My 85 yr. old mother called to say she could play tennis again. We played and the next day she told me it was the biotin which she had started taking for thining hair. She used to be breathless but now no longer had this problem. I googled biotin and found it was necessary for transfer of CO2 and production of ATP.

I figured it was cheap and non-toxic so I would give it a try. I had pretty immediate and dramatic results. All of a sudden I had tremendous energy, my chemical and food allergies improved dramatically and my hypglycemia was gone among other things. I had taken St Johns Wort for the past 20 years but no longer needed it. This releif has continued at 5 months and counting. I am very knowledgable in supplements, ayurveda, homeopathy, acupuncture which I do on myself, herbs, etc,, but had never heard of this.

My 2 friends with fibromyalgia for the past 30 years both had dramatic results with their energy after 4-6 month of treatment. All my other friends who have tried it have had significant increases in energy. I review clinical trial protocols and analyze the results for a living and understand the placebo effect and this is definitely not such an effect and don't care if it is. An added benefit: it is dirt cheap. Take 5000 mcg biotin a day (can be purchased anywhere but Vitacost sells a year supply for $12.)

Also I recommend that you make sure your Vit. D levels are adequate. Get them checked out by a doctor, but you could take about 2000 IU a day until you have them checked out. Most of the population is deficient in Vit. D and 1/4 of the pop is severely deficient. I was in the latter category. I was able to get my levels up before I started the Biotin and the increase in Vit. D did help my allergies somewhat. You should also probably take an adequate B complex (prbably B50 or B100).

It may take as much as 4-6 weeks to see effects.

I have been told that one practioner uses 20mg to treat candida and supposed to be effective against protozoan infections.

Caution: if you are on insulin you need to be careful because it lower blood sugar. Also supposedly effective for pre-diabetics.

From my googling, I only found 1 side effects: headaches. If this s a problem just try lowering the dose.

Good luck and hope everyone else has similar results.
 

Dreambirdie

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I have taken biotin on and off for years and haven't noticed any increase in energy from it. What I do notice is that it helps my fingernails from splitting. As soon as I stop the biotn, they crack and split much more easily.

I'm not sure if it's a good idea to be taking just one of the B vitamins in isolation, unless there is a very clear specific deficiency. I have heard many times now that it's best to take all the Bs together in a B complex, but WHICH B complex is the most balanced is always up for debate around here.... :nerd: sometimes LONG and endless debate! :ill:

I am going to try the B1 again and see if I notice anything this time. Last time I took it, it made no difference.
 

Wayne

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I just did search on the ProHealth board for "thiamine" in the extensive thread over there entitled, "What Worked For Me". I only came up with one post [out of almost 500], but it was quite interesting. It was a fairly lengthy post which listed 18 different supplements that were apparently successful for this person. Three different B vitamins were in her first six recommendations. --- In #2, she lists her favorite forms of thiamine. Here's a link to the entire post with all 18 recommendations.

March 25, 2008
Being a natural health professional, researcher and also former/present CFS experiencer, I have come to the conclusion that CFS is an obvious malfunction of tissue metabolism in all organs particularly the brain and glandular system. On a cellular level this can equate to mitonchondrial dysfunction, and starvation.

1. Recent research into Trans-Resveratrol (the red wine molecule that has extended life spans in several species), that it improves mitochondrial function and biogenesis (production of more, new and better functioning mitochondria). Mitochondria are the cells energy powerhouses. There are VERY obvious increases in stamina after taking 500mg capsule of a 98% pure Trans-Resveratrol supplement. Not to mention, better carbohydrate tolerance. Resveratrol has shown beneficial effects for the brain, heart, liver, not to mention it enhances insulin sensivity, regulates the stress response, and activates DNA repair genes. THIS IS KEY!

2. In addition I would recommend either a sublingual or injectable Cocarboxylase supplement or therapy. The western name for Cocarboxylase is Thiamine Pyrophosphate or Thiamine Diphosphate which is the active coenzyme of Vitamin B1. This is a keystone in both carbohydrate metabolism and dozens of studies have shown its capacity to regenerate nerves. THIS IS KEY!

3. Pyridoxamine - The all time best version of vitamin B6. I would recommend 1 capsule daily of a product Jarrow formulas makes called "Pyridoxall", contains 3 versions of B6. This products seems to normalize nerve conductivity and releive anxiety, depression and cardiac arrythmias. Very potent and Pyridoxamine also scavenges certain unhealthy proteins that cause aging. Great for proper protein synthesis in the brain and body. IMPORTANT

4. PhosphatidylSerine - Very important brain lipid needed for brain mitochondria and energy metabolism. IMPORTANT

5. Transfer Factor classic then later adding advanced formula (4life). This product re-educates the immune system amazingly well. You can actually begin to feel a difference slowly but surely. This is a must, in addition to 2 good probiotics; Culturelle and Ultra Flora Plus DF by Metagenics. VITAL

6. 100mg of Vitamin B5 daily. Pantothenic Acid - NEEDED FOR EVERYTHING TO HAPPEN. Too much to type.
 

A.B.

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It's the third day of my high dose thiamine test. I've already taken 1g today and will take another 0.5g later.

The initial impression is positive. I have enjoyed a feeling of relaxation which I attribute to the thiamine. Mood has also been good since the start of the test. Chronic fatigue hasn't changed. I had mild flush and increased body temperature in response to the first dose but not to the subsequent ones.

PS: I have also found some literature that's relevant to the topic:
Pharmacokinetics of high-dose oral thiamine hydrochloride in healthy subjects

In conclusion, our study demonstrates that high blood levels of thiamine can be achieved rapidly with oral thiamine hydrochloride. Thiamine is absorbed by both an active and unsaturable passive transport mechanism up to 1500 mg.
 

alex3619

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My 1998 protocol was an antioxidant and B vitamin protocol with some select minerals including chromium, zinc and magnesium. Biotin was in it because I too had noticed an improvement on biotin. The improvement I got wasn't huge, but it was enough to combine it with the other things I felt better on.
 

Lynn

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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
 

Sasha

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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

Wow - that's great, Lynn! I hope it keeps working.