Vitamin B1 And Dysautonomia

[beggiatoa]

Just a quick update. I've been using 1 500 mg thiamin mononitrate pill in the day and 1 150 mg benfotiamine in the evening. So far, I've noticed I get less naseaus while riding in cars and I can squat and sit up without almost passing out. This is a big improvement. I'm excited.

I think I have a problem with low stomach acid. Including Betaine HCL also helped a lot. I "feel" the supplements I take better and I don't get gas and bloating after meals.

[beggiatoa]

Another quick update.

Before I stared using Benfotiamine, my BP was 80/55. I had tremors in my hand. POTS was very bad. I would become very nauseus and dizzy simply riding in cars.

I've been using 150 mg Benfotiamine, 3 X per day with meals along with 500 mg thiamine mononitrate and I have noticed the following improvement.

Today my BP was at 117/85. I removed stitches from my dog yesterday without any noticeable tremors. I rode in a car all day without feeling dizzy or nauseus. Also, I'm able to bend over, squat, play with my dogs and stand up without almost faiting. This is very good news.

I don't really know anything about drugs used to treat POTS. I do know that Dysautonomia involves a problem with the nerves in the autonomic nervous system. B1 works directly to repair these nerves. Obviously, something is working!

Other areas I've noticed improved: I don't feel as thirsty. Sometimes I even forget to drink water. My eyes still feel dry and gritty, but I'm hopefull.

I've also learned that I have other problems. All this was based on the symptoms and not on any actual tests. However, I do remember having a blood test and finding that I had normal/low sodium (which is consistent with my low BP), and my testosterone was on the low/normal side. I also feel like I am estrogen dominant (I am male). I have a slight problem with gynecomastia and stubborn fat around my mid section which is indicative of high estrogen. I believe I also have low stomach acid, candida, and low adrenal function. Maybe all these things will take care of themselves as I continue this treatment. I also use other supplements, but none of which had any effect on this before, ever.

I had mercury amalgams removed in the last 2 weeks and believe I might have been affected by mercury poisoning. I sent in a hair sample for a mineral analysis and the results should give me an idea of what's going on.

In my opinion the allithiamine cream waterbaby uses & the benfotiamine both seem equally effective. I like how the cream also supplies methylcobalamine, a type of B12 vitamin that specifically works on repairing neurons and nerves. I've been supplementing with this as well.

Edited November 6, 2008 by Sunfish
specific medical advise removed

[ana_22]

Did everyone that is using this cream successfully have a test to see whether they were b1 deficient?

If so, were you very deficient? and how long did it take for the cream to have some effect?

thanks

[beggiatoa]

I, unfortunately, could not be tested before starting benfotiamine. However, based on the symptoms and on how I am steadily improving, I'd say I was deficient enough.

I also received results for a mineral hair analysis and my mineral profile is all messed up. Only 2 are normal and the rest are either really high or really low. Even antagonistic minerals are both low. Normally, if one is high, the other should be low. In my case, both are either low or high. That makes no sense. However, based on the work of andy cutler, this points to Mercury toxicity.

I quite possisbly have a problem with my adrenals with low cortisol and low aldosterone.

Dysautonomia seems to be related to people that were previously infected with Epstein Barr virus (infectious mononucleosis), Which I had when I was 16.

So, the plot thickens.

[beggiatoa]

There may be a reason why TTFD is more effective than thiamine mononitrate or even Benfotiamine. While these all both derivatives of thiamin, they fall into different categories.

http://www.pubmedcentral.nih.gov/articlere...i?artid=1375232

"Although a series of S-acyl derivatives were studied, these investigators found that the disulfides had the best therapeutic effect "

Benfotiamine is a S-acyl derivative while TTFD falls under the disulfides. TTFD is also called fursultiamine.

"They concluded that thiamine enhances elimination of lead from the body and that this feature may be beneficial in chelation therapy."

This is way cool.....but

"It was noted that S-acyl derivatives are devoid of the preventive effect against trichloroethylene, potassium cyanide or lead intoxication that characterized their investigation of thiamine propyl disulfide, one of the early disulfide derivatives."

So, only the TTFD form can also chelate lead and other nasties from the body.

Waterbaby, do you still do phone consultation with Dr. Lonsdale? Maybe you can ask him if Benfotiamine will be as effective as TTFD to treat dysautonomia.

[beggiatoa]

Nevermind, I think I answered my own question. Unfortunately, I think the stinky garlic cream IS the most effective method as waterbaby has insisted on. I was trying to avoid this at all cost, plus, it is easier to just take a pill.

According to Lonsdale, befotiamine is NOT an allithiamine, therefore it will not have the same biological activity we're looking for. Ecological formulas does make a synthetic form of allithiamine called Allithiamine but again, it's synthetic, not natural. I wonder if it works the same??

http://findarticles.com/p/articles/mi_m0IS...ag=artBody;col1

http://findarticles.com/p/articles/mi_m0IS...ag=artBody;col1

http://findarticles.com/p/articles/mi_m0IS...ag=artBody;col1

http://journals.indexcopernicus.com/fulltxt.php?ICID=11763

[beggiatoa]

I wrote a thread on a life extension forum to see if someone there knows more about this

http://www.imminst.org/forum/index.php?sho...mp;#entry277721

It seems benfotiamine, which I'm using now, DOES NOT raise thiamine levels in the brain so it only works on peripheral nerves. I guess this explains why my tremors have improved but nothing else.

However, the allithiamine (TTFD) cream or pill DOES increase brain thiamin levels and this helps our Dysautonomia.

[cordila]

Hi guys:

Just wanted to jump on and say 'hello'. I've been posting like mad-crazy today after a long break. Why? Because I arrogantly stopped taking my B1 cream thinking I had this thing licked! I had taken my first flight in 3 years (successfully) and simply felt like my life had moved beyond my needing the cream. Well, after 2 weeks off the cream my body went cage-fighter on me last night. I got drilled w/massive tremors, horrifying nausea, and a vice-like grip around my gut. Not fun. A full 24 hours later I still have had no fluids or food today. My BP is low and HR high - big surprise. All that to say I believe now more than ever that B1 cream works!

Beggiatoa, are you still on the bandwagon? I'd love to hear how things are going for you.

Waterbaby

[looneymom]

I thought this was a very interesting post about B-1 and that it needed to be bumped up.

Rachel

[Katybug]

Rachel,

I bet these old posts were some of the info I read that made me switch from supplementing just B12 to a B complex. The switch definitely gave me a boost in energy in the hours I'm awake. It hasn't resolved my daytime hypersomnia but it makes the quality of my awake hours better. I can definitely feel if I slack on my supplements.

[Janie OH]

This would be good information to revisit, even though the thread is very old. I used to use the TTFD (Allithiamine creme from Dr. Lonsdale) with great gains, but now use oral Allithiamine instead. I don’t see nearly as much talk about Allithiamine here as I expected! Anyone else using it here? The blog Hormones Matter has a wealth of information about it! 

https://www.hormonesmatter.com