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Old 10-14-2013, 08:48 AM #41
kazzar1958 kazzar1958 is offline
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Hi all,

I've just read this whole thread and followed with interest the twists and turns regarding fact, opinion, mainstream/alternative medicine, the development of western medicine etc.,

I have mercury fillings from childhood, a history of cracked and broken teeth/fillings and now I'm confused. I have just started taking Dr Best's benfotiamine/ALA combo (3 days now) and I don't know if I should stop. Also, should I mention this to the neurologist in November or would the potential amount in my system be miniscule ?

On a different note, I have drunk alcohol all my adult life (weekends), and although not alcohol dependent, I have considered it as a cause in my case.
It was exactly 6 weeks since having a drink on Saturday 12th (my birthday), when I decided to have a few glasses of red wine with friends.
I think 6 weeks is probably too short a time frame to see any improvement, if any (if indeed it is a contributory factor).
Having said that, the sharp stabbing pains have become much less frequent over the last week or so. This could be a complete coincidence I know and I don't want to get my hopes up unnecessarily. This is one of the frustrating things about not yet being diagnosed /cause found.

Karen

PS Any thoughts on the mercury issue would be welcome...
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Old 10-14-2013, 09:25 AM #42
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I have mercury fillings.

I have been unable to take RALA due to acid reflux but I just ordered some, it's been a year and I really wanna try to take it since it's such a mainstay of helping pn. I am the one who started this post and I do research everything to death, but to date, as it's been stated here, not enough has been proven to scare me away from this supplement.

I will always ask questions, even when it appears dumb, or wrong, that is me, then weigh the pros and cons.

As for alcohol, I have never been a drinker at all, not really even social since I don't like wine. I did party as a 20 year old. But from 25 to now, not really except special occasion or an occaisional foo foo drink, lol like strawberry daquiri. However, I can not drink alcohol now. Last month my mom came to visit and I made rum and coke for my mom and I and within 30 minutes I was in the middle of the worse flare ever. Even my mom was shocked.

A couple nights later I made daquiri's for everyone, and I did drink one, and it was not as strong, less alcohol than rum and coke, and while I did not flare as bad, still within 30 minutes I did have an episode.

No more alcohol for me, not worth the pain.
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Old 10-14-2013, 10:04 AM #43
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Thanks Stacy,

I know what you mean about doing research. It's so time consuming and particularly with a supplement like this which could actually do harm as opposed to merely being ineffectual at worst, it's a big decision. I really want to be as proactive as I can though and cover all bases by taking whatever might help.
I also noticed on the label it said that no daily amount had been established (the one I have is 150mg ben/300 mgALA.

As for the alcohol, I fully expected to have a flare after drinking on Saturday. I suspect my logic is flawed on several counts though..
1) I don't even have a diagnosis.
2) Therefore I don't know alcohol is the cause.
3) If I have alcohol induced PN, it's taken 35 years to take a hold. One night after 6 weeks notdrinking is not going to have a dramatic, if any effect.

After all that, I don't know if it was psychosomatic or not, but I had a few shooting pains in the toes during the evening, nothing much.
I did have a migraine though, but as I'm a life long sufferer (auras, not recognising words, parasthesia etc.,) I didn't think it was significant in any way.

Ah, the role of the mind in physical illness, a whole new topic..

Karen

Karen
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Old 10-14-2013, 11:05 AM #44
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I have not had any tests done either.

My doctor said it was hypothyroid but no proof and no tests. It did get better after getting on thyroid meds. But I can say mine is for sure not from alcohol, however, clearly, drinking alcohol hurts me when I drink it. So, I do not believe it has to be alcohol induced pn in order for alcohol to make it worse.

I have not reached the point that it matters why I have it since the end result is the same but who knows, if it keeps progressing I may change my mind on that point. Right now it's only burning.

I do not want to take the benfotiamine and R lipoic together because I may need to take more of one than the other, for sure, so I chose to get them seperate. I did look at that supplement but I no I need more benfotiamine and ALA needs to be on empty stomach.
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Old 10-14-2013, 11:30 AM #45
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Migraine is a vascular disorder. Magnesium is used in some migraine treatments, here in the States. Also there are studies on PubMed over the years using magnesium supplements for pediatric migraine and adult migraine. Keep in mind if a study uses magnesium OXIDE, it will probably be negative, as we know now that the OXIDE form is not systemically absorbed. But in the past this knowledge was not available.

So this is another reason magnesium is important for you, Karen.

The amount of ALA in your combo is low. If it is the old ALA which is a combination of R and S forms, only the R is active in the body.
So 1/2 of that ALA is inactive. It should be taken on an empty stomach because ALA with food (the old form), may have reduced absorption up to 30%. So in effect your supplement is very low in dose for that nutrient.

The Benfotiamine, does not have a food restriction. It is very easily tolerated, and useful for people who drink alcohol, or eat lots of carbs and sugar.
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Old 10-14-2013, 03:00 PM #46
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Benfotiamine is good for the blood sugar levels even if you have a low carb/sugar diet and good for glycation, AGE's and endothelial function.
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Old 10-14-2013, 03:32 PM #47
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Well, whaddya know, after a quiet few days painwise, both feet up to ankles were playing up this evening (all through my choir for goodness sake!!), plus burning on shin.

Just another day in PNville...

Nothing compared to others here. Thanks to everyone who have supported me in such a short time. I really don't know what I would have done without this place. I can't stress that enough.

Karen
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Old 10-20-2013, 09:04 PM #48
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I wonder if Rlipoic can help if you only take it every other day???

I so want to try this supplement, again, so I got another bottle. It's been a year since I last tried it, reflux is gone and doesn't hardly ever bother me.

I started taking it a couple days ago, I take it 3 hours after a meal and also take 1/2 tsp of sodium bicarbonate and it works pretty good, but everyday is pushing it. I can feel it kinda starting to act up but not bad so I am thinking about taking it every other day.

I am hoping every other day can help...better than nothing.
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