Benfotiamine(A type of Thiamine/B vit.) & Methyl B12 for Neuropathy -- Anyone use this?

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Obtuse1
Regular Member


Date Joined Feb 2007
Total Posts : 114
   Posted 7/9/2009 5:41 PM (GMT -7)   
Hello all:
 
I've not been here in a long while but am glad to see it's still active and well used in supporting each other. I think this is maybe the best such board on the web, and I really appreciate how well it is moderated. I don't come here as often as I once did due to an interesting paradox/dilemma I experience when on this CP board: first, as someone in cp since 1984, and who lived-worked with it for many years without meds, and have learned to live with it, I find that when I come here I focus on the idea of pain -- and this leads me to focus my attention on my own pain (which I manage to push out of the foreground of my awareness most of the day). In short, even when I come here mainly to support fellow CP-ites, it ends up being a end-gain negative for me alot of the times. Maybe someday I'll learn how to better control those thoughts and tendency toward the dark side and focus more on being helpful to others who are surely far worse off than I.
 
But that's not why I'm here today. I have had peripheral (non-diabetic) neuropathy since not long after my botched spinal lumbar  fusion in '84, when it started as cold feet and worked its way up to my hips over time, going from cold to hot-cold-pins-burning-tingling...you get the picture...
 
So my ears perked up when I came across a B vitamin which is oil soluble, and thus stays in the system longer. I found one company WCN **** which sells a combination of the 2  I mention in subject, with some more B's and a bit of D & Folic acid. Testimonials are raving for helping neuropathy but I prefer to get testimonials away from a product web site.
 
I've googled and found a fair amount of support for the claims on the WCN web site, but wondered if any of you had tried Benfotiamine and/or Methyl B12[Methylcobalamin(e)] for your peripheral neuropathy. If so, what dosages etc worked for you? Would appreciate it. smilewinkgrin   Take care all, "OO"

[2}Dx: Post Spinal Fusion chronic pain since 1984;Polyneuropathy;Meniere's Disease, Left ear deafness & severe tinnitus on Left; Major Depressive Disorder (DX);
Hx,Meds: obtuselyoblique1.wordpress.com/


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/10/2009 7:08 PM (GMT -7)   
 
 
   Dear Obtuse,
 
     Welcome back! My name is Dani. It is very nice to meet you.  :-)   I am new here to the Healing Well Community and find it to be of great comfort to me.
 
     I do not know of the medicine you mentioned. In fact of any really... But I am learning slowly  smilewinkgrin   Hopefully someone will stop by and post about any experiences they may have had.
 
     Take care :-)
 
*huggs*
dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 7/11/2009 12:58 AM (GMT -7)   

Hi Obtuse and welcome back. I know nothing of the vitamins you are inquiring about, sorry. But, I can pass this tidbit onto you. I do know that many times when diabetics get neuropathy, many times their B12 is low. Once they start either pills or injections,  it can help with the neuropathy and can completely eradicate it. So, there is my limited knowledge on it.

I have PN in my hands & feet. I was also low on B12 and my PCP started me on monthly B12 injections. The neuropathy is not as bad as it once was. I was on Cymbalta and Lyrica and both helped alot. The Cymbalta helped for quite awhile but then be ineffective so I was switched to Lyrica. Perhaps some of the others may be aware of this stuff.


Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Swveral other health issues just not enough roo to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


Obtuse1
Regular Member


Date Joined Feb 2007
Total Posts : 114
   Posted 7/11/2009 7:29 AM (GMT -7)   
Hi Susie & Dani -- as always, this board is such a welcoming caring place -thanks for your kind thoughts.
 
I've decided to give it a try . The testimonials I read (presuming their not fictional) on the product's web site cover many with my sort of PN. So, as all my symptoms have gotten worse the last year or so, what I have I got to lose? The site with all the testimonials has the highest price, but, it also has a unique formulation. I'll let people know here after I've tried it for awhile.
 
And yes, I too found that the Cymbalta (taken for my depression) did take the edge off the neuropathy a bit, but very little.
 
tnx again and still like to hear of others with non-diabetic Peripheral Neuropathy who may have tried these. blush "OO"


[2}Dx: Post Spinal Fusion chronic pain since 1984;Polyneuropathy;Meniere's Disease, Left ear deafness & severe tinnitus on Left; Major Depressive Disorder (DX);
Hx,Meds: obtuselyoblique1.wordpress.com/

Post Edited (ObtuselyOblique"OO") : 7/11/2009 8:32:06 AM (GMT-6)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/11/2009 3:50 PM (GMT -7)   
Hi, O.O.,
Sorry to hear your problems are increasing. I also have non-diabetic PN in both feet, along with sciatic pain, etc., etc., etc. My started after a bad fall in 2004, and double lumar fusion in 2007 did not help it. I've been on neurontin for a couple of years now; not thrilled about it but I know it helps because if I'm late on a dose the symptoms get worse very quickly.

I had to, sadly, stop the cymbalta because is interfered with another medical condition, but I do know that at 30mg it helps mood and may help PN, but the dose that really helps PN if you go look at their website is 60mg. So if you're not on the 60mg I'd suggest talking with your doctor. I had to take effexor, which is the next best thing, but nowhere near as good as the 60mg of cymbalta - which was the only thing that made my feet feel normal.

As far as the vitamin you're talking about, I don't know anymore than what Susie has already said. I do take a B complex. I would check out Dr. Andrew Weil's website, as he's very good with a lot of this, except he also sells his own products, but he also may tell you what you need to look for in a vitamin.

Good luck!

PaLady

Obtuse1
Regular Member


Date Joined Feb 2007
Total Posts : 114
   Posted 7/12/2009 4:41 PM (GMT -7)   
Hi PAlady:

Thanks for the info. Sounds like you and I share alot of the same symptoms -- misery loves company I guess :D.

I started the Cymbalta at 60 mg for chronic depressive disorder (which I had managed to deny for years) when the medical stuff became the proverbial straw that broke this camels back. Was near the brink, but thanks to some good care at the VA I survived it. I did find that (and do) that the cymbalta definitely takes the edge off of it, but I'm also thinking that the B's might help other things, such as short-term or working memory, which is getting very bad...Anyway, I'm waiting for the Benfotiamine & the methyl B12 and will keep a log. I'll post here how it goes after a month or so.

Ah yes, Dr Weil, I'd forgotten about him.

Oh, I can't take the neurontin, it dopes me up so I just sleep. So I'd rather be awake with the neuropathy I suppose, which is why I'm looking wherever I can .
Anyway, thanks for writing."OO"
[2}Dx: Post Spinal Fusion chronic pain since 1984;Polyneuropathy;Meniere's Disease, Left ear deafness & severe tinnitus on Left; Major Depressive Disorder (DX);
Hx,Meds: obtuselyoblique1.wordpress.com/


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 7/14/2009 9:47 AM (GMT -7)   
 
 
   Dear OO,
 
     Have you ever seen an cranial osteopath? I am talking to a friend who has Meniers aswell. She said an osteopath was the best route to take, Just an idea.
*huggs*
dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


Obtuse1
Regular Member


Date Joined Feb 2007
Total Posts : 114
   Posted 7/14/2009 11:12 AM (GMT -7)   
Thanks, Dani! No, I've not tried that but will look into it. Thanks!
[2}Dx: Post Spinal Fusion chronic pain since 1984;Polyneuropathy;Meniere's Disease, Left ear deafness & severe tinnitus on Left; Major Depressive Disorder (DX);
Hx,Meds: obtuselyoblique1.wordpress.com/


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/14/2009 7:46 PM (GMT -7)   
OO,

I also see an osteopath for craniosacral work & he is great (and certainly not one to give up)!Osteopaths can help with a variety of conditions & even find things that you didn't know you had that are being caused by or are contributing to the cause of your condition. If you do see one, just make sure that they do craniosacral work, as it seems that some osteopaths are doing less & less hands on work these days. Craniosacaral work is very gentle, yet very powerful.

Skeye

Obtuse1
Regular Member


Date Joined Feb 2007
Total Posts : 114
   Posted 7/15/2009 8:00 AM (GMT -7)   
Thanks Skeye.

Years ago I had Sacral Cranial therapy from a wonderful chiropractor (who also used microcurrent accupuncture). It was a couple years into my cp for the bad lumbar fusion and he wanted to try it. He did it for about 8 sessions but it didn't do much, but another of his patients,(a friend of mine) used it and raved about it. It also has been used for behavioral things like autism in children. Truly a powerful tool.
But, things now with my condition are more systemic so it might be worth a try. My constraint is that I have no medical insurance and use the VA, so it might be tough to try it right now.
Appreciate any and all input, for sure.
[2}Dx: Post Spinal Fusion chronic pain since 1984;Polyneuropathy;Meniere's Disease, Left ear deafness & severe tinnitus on Left; Major Depressive Disorder (DX);
Hx,Meds: obtuselyoblique1.wordpress.com/

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