[kazzar1958]

I have recently been trying to plough my way through clinical trial papers about benfotiamine as it's one of the supplements mentioned here a lot. (I have just bought it..) It has been virtually impossible for someone like me (no scientific background), to really know what I'm doing.

Having read Ben Goldacre's Bad Science, I am aware of the bad practice that goes on in the pharmaceutical and nutritional supplement industries so I had a look at the Alltrials site and signed their petition.

www.alltrials.org

To those who haven't heard of it, the aim is to create a database where all clinical trials are registered to ensure transparency.
It came as a big shock to me that half of all trials go unpublished. So for example, there may have been 100 trials into a particular drug, 90 show unfavourable results, 10 are favourable. These are the ones that will get published and the rest get buried. This is unacceptable.

Another good place is The Cochrane Collaboration, a totally unbiased organisation that promotes informed choices for clinicians, practitioners and patients. They have a library with peer reviewed articles etc., but you have to subscribe.

www.cochrane.org

I hope I'm not teaching Granny to suck eggs here, but this is all new to me and I want to be well informed not partially informed by disreputable companies out to make a profit based on questionable reporting and dodgy scientific methods.

Karen
PS Tip when reading magazine articles and journals, particularly when published by a drug/supplement company, go to the bottom of the page and read the small print disclaimers. I recently read a couple by lef.org and at the bottom it
warned that the statements were not endorsed by the food and drugs administration...

[Dr. Smith]

Hi Karen,

Originally Posted by kazzar1958

I hope I'm not teaching Granny to suck eggs here,

ROTFLMAO! I hadn't heard it expressed quite that way before—thanks for the much needed/deeply appreciated shot of endorphins!

My own philosophy with regard to supplements is to check out the safety first, and if it passes that, and may have a shot of being beneficial, then—
If it can't hurt to try it, then it can't hurt to try it.

At the risk of lecturing Darwin on evolution*, I've found it easier to bring up documents of that type by prefacing search criteria with scholarly:, study:, clinical trial:, pubmed (I'm not good with their own search tool), etc., depending on what I'm looking for.

There is also (new to me—just found it!) a Google Scholar site based in the UK. I haven't test-driven it yet, but it appears to do all of that filtering for us automatically.

*In seeking an alternative comeback to egg-sucking, granny teaching, choir/convert preaching, etc., I came across A Secular Alternative to “Preaching to the Choir”? Some of the best discussion is in the comments.

Doc

[Kitt]

Originally Posted by kazzar1958

Karen
PS Tip when reading magazine articles and journals, particularly when published by a drug/supplement company, go to the bottom of the page and read the small print disclaimers. I recently read a couple by lef.org and at the bottom it
warned that the statements were not endorsed by the food and drugs administration...

Interesting site which I have kept for a long time.

http://ods.od.nih.gov/factsheets/Die...hProfessional/

[mrsD]

All of the supplement statements have the FDA disclaimer in the US. This is because almost all of them are NOT drugs.

A very few OTC things do have FDA approval. SAMe is one, and another is the new Salonpas Arthritis patch (10%).

Most of the Benfotiamine and ALA papers come from Europe and for many years.

FDA approval these days, is a controversial thing IMO. I wouldn't worry much about that.

The PubMed link is free to abstracts and at the top right of each page here at NeuroTalk.

Many of Big Pharma's drug trials do go unpublished. These are the negative results as a rule. It has been very contentious here in US over this situation and medical journals. Some progress has been made, but people need to understand this before starting drugs, that have been detailed to doctors using only favorable studies, and where the negative ones have been omitted.

Nutrients like benfotiamine and lipoic acid are not drugs.
You need to keep that in mind. Benfotiamine is a form of thiamine B1 which is a vitamin. Lipoic acid is made in the body naturally. None of the doses here recommended by me are very high. So therefore you are only replacing what you might need and not taking extra.

[Sallysblooms]

Good post Mrs. D.

People can learn a lot on this forum and from a good integrative MD.

[Wide-O]

I follow Ben Goldacre on Twitter - after having read "Bad Science" years ago - as I think he does important work with a tireless zeal.

That said, ironically, very many of the recommended (or maybe I should say: suggested) items in this forum are not drugs - as Mrs. D already stated - and are generally considered a) safe and b) widely used in many countries. Also: it is stated often that you have to find what works for you, for your particular PN, for your body, for your age...

Vitamins like B1 and B12 (for example) are absolutely safe. The worst* thing that can happen is that you pee them out if you take too much. A lack of B12 however is a serious condition, and a very real, widespread one; I'm not sure if trials will reveal all that.

Now you can argue wether, for example, it's better to take B12 injections, or use the oral methylcobalamin route. That's why I tried both, and found the cheaper and less intrusive oral version just as effective by having my own blood measured. (and discussing these findings with my GP) For me, that's also part of science: measuring what works for you. (either objectively or subjectively - does it make you feel better/less pain?)

B1 on the other hand has been used widely (still used?) in Japan for treating alcoholics. Benfotiamine is just a more effective version of B1.

I'm just giving these as examples, there are many other "supplements" discussed here, and you will find after a while that most of the recommendations make a lot of sense. (although, again, not all of them will work for everyone)

And yes, there is something like "Big Supplement" as well. Where there's money to be made, it is to be expected. And many of these supplements are pretty "iffy", no doubt about it. Yet again, although some of them are mentioned here now and again, I mostly see a healthy discussion about them, and it is certainly not standard "recommendation".

I love science, but at the same time it is recognized by many health professionals that medicine is not always an exact science (yet?) at this point in time - especially for people with a condition like PN. While I'm certainly not advocating "woo", I do think that the harsh "there's nothing we can really do" covers it all, nor is it particularly fair to the patients. There's still a lot we don't know about the human body. For example: who knew that you can react like a diabetic to certain foods (sugar, carbs) without showing a trace of diabetes in your blood work? I now do for myself, and I think Dr. Smith is another example. (there might be more on here)

Anyway, good discussion, I have been trying to gather my thoughts on this subject for a long time now (and have clearly not succeeded yet )

* OK, you could be allergic, or you could be in trouble when your kidneys don't work, but then you would probably know that you should be very careful

[mrsD]

Genetically Asians have a high incidence of errors in metabolizing alcohol. (they also have trouble with some statins like Crestor).
So it follows that in Asia, we might see more use of Thiamine and benfotiamine. Thiamine has always been part of rehab with alcoholics here too, as alcohol and adehydes like formaldehyde deplete this enzyme (that thiamine is part of), rapidly.

And thiamine has historically been a treatment by neurologists for PN...before gabapentin et.al. eclipsed it.
Thiamine is still useful IMO.

One good link to nutrient information is Linus Pauling Institute.
It gives good monographs, with a complete bibliography, with each monograph.
http://lpi.oregonstate.edu/

We have a vitamin forum here too, with many discussions and links to the various things people ask about:
http://neurotalk.psychcentral.com/forum49.html