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Vitamin B1 And Dysautonomia

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I constantly research dysautonomia and what I can do to help myself heal and/or manage this condition. I came across a medical article by Dr. Derrik Lonsdale siting a deficiency of B1 (thiamine) as a precursor to, and continued state of, people with dysautonomia. I had my doctor run a transketolayse test for B1 deficience and sure enough I came back 'severely deficient'. I'm now applying B1 cream once a day (my gastroparesis prevents me from digesting and metabolizing vitamins appropriately) and have been for a month. At the beginning I noticed extreme and severe negative reactions or exacerbation of my symptoms. I was told to expect that from Dr. Lonsdale as my body attempts to balance what is otherwise imbalanced or lacking. The severity of my reactions have minimized significantly but I am still waiting for a feeling of wellness (aren't we all?). Has anyone else experimented with B1 vitamins/cream/IV and/or heard of B1 deficiency with dysautomonia?

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Never heard of that! I'm B12 deficient and get injections, but I don't think I've ever been tested for B1. Would be interesting to hear from some other people on this. Keep us posted on how it makes you feel!

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I will! But listen to this! My mom got tested for B1 deficiency, too. She doesn't have dysautonomia but she has Lupus, Rheumatoid Arthritis and Raynauds. She went to her lupus doc last week and had him test her for B1 deficiency, too. And? She's deficient! So it beggs the question of genetics. The expression of her deficiency is competely different but it's nonetheless very interesting, no?

How did you get tested for B12 deficiency? What test did they run? And how do you think that deficiency expresses itself? Can you tell a difference when you get a shot?

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Both of those deficiencies are interesting... For those who are deficient it isn't due to diet right? It is more due to the way the body stores or metabolizes it?

So, for both of those tests (B1 and B12) they are blood tests, but they are not a normal blood screening?

What are the symptoms that you had for both of those deficiencies?

I had been told that some of my issues may be due to B12, but I am not sure if I have been tested. It is another one of those things that I need to ask the dr about. There are too many! And they seem to not like questions! Or give you the time to ask them! ;)

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Wow, a real thiamine deficiency! This is treatable, and your prognosis may be quite good.

There are several reasons for thiamine deficiency. Years ago, the most common was inadequate intake, which usually occurs when people have high-carbohydrate, low-thiamine diets (i.e., mainly polished rice). The resulting disease was called beri-beri. It used to be a major cause of disability and death in Japan. The cure for beri-beri was to eat "rice polishings" or, after the discovery of thiamine, to take the vitamin in a supplement.

Nowadays, the most common causes of clinical thiamine deficiency are alcoholism (because alcohol interferes with thiamine uptake), gastrointestinal disease (which causes poor absorption), or improperly prepared tube feedings, which simply lack thiamine. Another possibility is a deficiency in the thiamine transporter, which can be genetic. Yet another possibility is thiaminase, an enzyme that could occur in some rather strange foods or can be produced by bacteria in the gastrointestinal tract. If you have a clinical thiamine deficiency and gastrointestinal disease, the answer is to take a thiamine supplement. Ask a pharmacist, preferably one with a PharmD degree, what the options are for thiamine supplementation.

I would consider one of the allithiamines, such as benfotiamine, because it doesn't depend on the thiamine transporter for absorption. Ask specifically about that.

I know that thiamine cream is used as an insect repellent, but I don't know how well thiamine is absorbed through the skin. Is the cream restoring your transketolase levels to normal? If it isn't, you must do something else, because severe thiamine deficiency can cause permanent brain damage.

Thiamine (vitamin B1) is a water-soluble vitamin with a very short half-life, so you have to take it every day. You can self-inject it if you can't take it by mouth.

Here's the Web site of a woman who had chronic secondary thiamine deficiency

http://www.geocities.com/bron.evans/index.html

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I too test low on B1, B12, and glutathione. I have been supplementing. Something is helping (course I am also taking meds) but I'd bet the vits are a part of it.

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Thank you lthomas521 for the link! I will read every inch of her site!

The thiamine cream I am taking is, indeed, allithiamine. I have no idea how the deficiency started except that my dysautonomia expresses itself chiefly with severe GI distress. It's possible that is not allowing metabolism to take place. Due to the gastroparesis I also had a near-deather last year with a stomach parasite infection. I feel like if i could just get my stomach moving again, things would change dramatically (wishful thinking?...).

I don't know anything about the thiamine transporter you mention but I will certainly look into it as my mom has B1 deficiency, too. Thank you so much for the valuable information! I'll let you guys know how it all goes...

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I wanted to bring you guys up to date on how the Vitamin B1 treatments are going. My mom and I were talking last night and we both realized that after one month of treatment, the following is occurring:

-increased tolerance to temperature (I don't get as cold or hot anymore)

-increased energy (significant enough for me to get [and hold] a full-time job working from home)

-decreased blowouts (i call my severe abdomen bloating a 'blowout')

-increased tolerance to barometric pressure changes (my neighbor who also suffers from dysautonomia has been a wreck during the season changes. I have not had a single incident. No dizziness. No headaches. No fatigue. I feel totally fine during this time!)

The best is my PMS symptoms were so completely absent from my period this month that I actually thought something strange was happening and that I had bizarre vaginal bleeding. I was having my period and I didn't even know it!

Not all is completely well with my world yet. I still am very easily overstimulated and my gastroparesis is still present a little but all-in-all I have had a marked betterment of symptoms. I'm wondering if this is something others of you should try?...

I just rub 1/4 tsp of thiamine cream on my inner thighs every night. That's it. And I am sure it's responsible for bringing about the above changes because I've changed nothing else in my life. If any of you do try it, too, please tell me how it goes. I'll report back in another month or so again.

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Thanks for the update! Keep us posted...

Where did you get your cream?

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Here's the link to where I get the allithiamine cream. http://www.prevmedgroup.com/westlake.php

When you first being using it, you generate quite a stink (sort of a strong B-vitamin/garlic smell) so apply it when you're not going to be in public for a few hours. Also be careful not to get it on your clothes as they will stink, too. Now, after a month, I don't stink anymore (but I still am careful with getting it on my clothes).

You may also suffer a 'healing crisis' or 'paradox' or a worsening of symptoms before you feel better. This is normal and a good sign as it means that your body is responding to the treatment and is attempting to balance your system.

If you'd like to read more about the doctor I'm seeing and his thoughts on dysautonomia and B1 deficiency just Google 'Derrick Lonsdale dysautonomia B1' and you'll surface some really interesting medical papers.

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What dosage of B1 are you taking? Is it enough to get extra B1 in an oral multivite? I take a high potency multivite which has 50 mg, which I think is a pretty hefty dose.

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I'm getting 40mg through my skin and the cream I use is made of a garlic synthetic called TTFP. Garlic contains a huge amount of disulfides which makes it easer for a molecule to enter a cell. When a garlic bulb is crushed or cut an enzyme within the bulb is activated. This natural phenomenon creates a form of thiamin which passes easily into body cells. The lotion I use contains this garlic derivative (which is probably why it stinks so much!).

From what I understand (gastroparesis or not) taking thiamin orally (water soluable) is a subpar was of getting the nutrient. It has to be actively transported into body cells by means of an enzyme in the cell membrane. Its absorption into the body is therefore somewhat limited. But if you take it transdermally (through the skin) a little bit goes a long way because it is much more easily absorbed into the body. Because of its ability to pass through the fatty substances that create a kind of waterproofing of each cell, it is also know as fat-soluable thiamin.

Think about old folklore where they used to hang cut garlic around a sick persons neck or rub crushed garlic onto the bottom of a sick persons feet. They must have been onto something!...

I'll keep at it and keep reporting how I'm doing. Dr. Lonsdale is reluctant to put a timeframe around when I can expect to feel better but his assistant, off the record, said she usually sees people have marked leaps in wellness around the six month mark. One down, 5 to go...

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The allithiamines that are taken by mouth don't depend on the thiamine transporter for uptake, so you might be able to switch eventually.

Allithiamines in doses much larger than the RDA for thiamine are extremely valuable for preventing complications of diabetes and are extremely well tolerated. New slogan: "Thiamine. It's not just for beri-beri anymore."

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I'm meant to get a nutritional IV infusion of thiamin as well as other nutrients next week. I'm a little nervous because I generally don't tolerate meds or any sort of stimulant or anthing requiring metabolism. I can react very severely. My doctor knows this and is doing step-up dosage but I'm still nervous. Has anyone had any nutritional IVs?

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it's obviously not the same thing as what you're referring to, but i was entirely dependent on IV nutrition (TPN, or total parenteral nutrition) for over a year and a half, so i suppose i have had a LOT of "nutritional IVs". they contained everything needed by the body (sugars, proteins, fats, vitamins, etc) including thiamin on a daily basis. i've also been given numerous things on their own during hospitalizations but other than the comprehensive the only things i've received intravenously on an outpatient/ non-critical basis are saline, potassium, magnesium, & antibiotics. (i get B12 injections weekly but IM injections are very different from IVs.) the only thing i've ever had a problem with was iron & one specific antibiotic. other issues associated with TPN (liver damage) but they are very specific to TPN, largely the fat.

i hope your infusion goes well,

;) melissa

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It makes sense, too, that with all the water drinking we do, and B1 being water soluble, that we might just flush much of it away.

Also, eating foods from which the B-vitamins have been removed -- the refined carbs -- will aggravate deficiencies. The B's are required for carbo metabolism (among other things) and need to be part of these foods.

I am really happy for this thread and your improvements.

OLL

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So I tried the nutritional IV last week. It was a complete bust. They used a flexible needle and for whatever reason I have problems with those. Once the needle started to go in, my veins instantly collapsed around it making it amazingly painful to drive it further in or pull it out. So the pain led to an adrenalin rush. The adrenalin rush led to a vaso-vagal reaction and before I knew it I was laid out flat and the doctors were saying things like 'we're loosing her.' Not exactly what one wants to hear under such circumstances. They stopped the IV and put in 2 full bags of lactic ringers which brought some color back into my face (was white as a sheet aparently) and reestablished a pulse (I guess I lost it there for a minute). All-in-all I'm irritated. I was so hoping the nutritional IV's were the next step in my recovery. What I can't figure out is why the crazy over-reaction? I'm not afraid of needles. I wasn't insanely nervous. How is it I can be fine one moment and completely loose it the next? The good news is, with the continued application of transdermal B1 my wipe-outs do not last as long as before. With all that happened above, I was able to walk to the car within an hour. I was pretty physically achy and feeling weird for the rest of the day but the following day I was back at my job again (working from home). That would NOT have been a possibility before the B1. For an example, after my TTT a year ago I was in bed for 2.5 weeks. Couldn't move. Couldn't wake up. Nothing. So I would say that's a vast improvement. Now if I could only blunt the severity and enormity of the reactions. They seem so disproportionate. Makes me feel like a Drama Queen. So if anyone has any ideas to help blunt adrenalin responses....please share...

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I don't think the vasovagal reactions always mean you're anxious. I've gotten them when I wasn't. In fact, the other day, a freaking FLU SHOT made me feel woozy. And I wasn't even watching! And I certainly wasn't worried about it! It was a flu shot!

Amy

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Both of those deficiencies are interesting... For those who are deficient it isn't due to diet right? It is more due to the way the body stores or metabolizes it?

So, for both of those tests (B1 and B12) they are blood tests, but they are not a normal blood screening?

What are the symptoms that you had for both of those deficiencies?

I had been told that some of my issues may be due to B12, but I am not sure if I have been tested. It is another one of those things that I need to ask the dr about. There are too many! And they seem to not like questions! Or give you the time to ask them! :)

Hey~

I have a significant B-12 deficiency and the doc says it is probably due to the problems I have digesting food. I have bowel hypermotility with chronic diarrhea. He thinks this may be the reason. I am also currently being tested for Celiac Disease. (I so pray it isn't this!)

As far as tests are concerned, at the office where I work, we do an initial blood draw to look at the B-12 level. If it is in the low range of normal, then we do another blood test for Methylmalonic Acid. If this level is high, then they usually diagnose a B-12 deficiency. I 'need' weekly B12 injections but I get a terrible rash (acne vulgaris) and can't take them. And since I don't digest things well, then oral B12 is almost useless. So I'm still battling this!

So, if you've been tested for B12 deficiency and they have said it is 'normal', you might want to find out if it is the low range of normal. If so, ask for the Methylmalonic Acid blood test to confirm. If you can be successfully treated for B-12 deficiency, you may feel a lot better. I've seen patients' overall health really turn around with treatment.

Good Luck!

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Is anyone else trying the transdermal B1? I'd so love to have a partner in crime! It's been almost 2 months of the B1 cream and this is the second month where I had absolutely NO PMS symptoms. On top of that, my period was much less heavy than normal and much shorter. My standard 10 day period was down to 5. Something is most certainly happening and the only thing I can ascribe it to is the B1. I still have vaso-vagal reactions and I still experience gastroparesis (and all that that entails) but my life is slowly and markedly turning around. Is someone out there willing to try the B1 with me? It's making a difference in me...maybe it can make a difference in you, too!

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I'm not doing transdermal, but I take 500 g of thiamine every morning. If I don't take it, I get stupid within a day or two. The B1 has been the most important thing for me. I went from trying to figure out how to go on disability to being practically well within about 2 weeks of starting the B1 supplementation. I felt a dramatic improvement within the first 24 hours. My neighbor put it best: Laurie, you're on your feet, and you're pink! (as opposed to my customary bluish pallor, I suppose)

I really wish I could find a doctor who has any interest in the B1 angle. They all think that I must just be some sort of healthfood faddist, which infuriates me. They're the ones who are exhibiting irrational and superstitious thinking....

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