vipergg22
01-05-2006, 06:48 PM
Has anyone tried this for peripheral neuropathy relief . Seems to be some information out there that says this can help quite a bit . Has anyone tried this ? Also what doses were you taking . Where did you buy it if you did use it . Looking for an answering , have tried just about everything else from B12 supplements to neurontin (there is some nice stuff ,makes you feel like a walking zombie) . Anyone have any opinions on this ??? I saw some info (studies) up on the National Institute of Health which indicated that it does help so I was wondering if anyone has any experience taking this supplement , it is some sort of thiamine derivitive I believe.
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6foot3
01-05-2006, 10:05 PM
Thanks for this info , i just did some research on it and it looks interesting.(special form B-1) However there's a lot of snake oil out there so keep your eyes open . later !!
magnolia37129
01-12-2006, 02:52 PM
I just started taking it last Saturday and do notice some mild relief; the right hand and arm have gotten somewhat better but not the left hand and arm.
Have you tried primrose oil and Vitamin D-3 for tingling?
Have you tried primrose oil and Vitamin D-3 for tingling?
magnolia37129
01-12-2006, 03:00 PM
:) Check out the research done so far per NIH:
http://clinicaltrials.gov/ct/show/NCT00117026?order=1
http://clinicaltrials.gov/ct/show/NCT00117026?order=1
suggus
01-13-2006, 11:34 AM
I am on my second bottle of benfotiamine. I was already taking thiamine so I take one cap on ben.. in the morning and my thiamine in the evening.
I bought it from ***************, 120 ct, 80mg of ben..., and 54mg of thiamin for a little under $10.
The idea of an oil based thiamine sounds great. However remember* vitamin theraphy is slow especially since you are fighting a condition that has taken, in my case, 10 years to reach the point where it is today. After 4 months I can't say that there has been any improvement I can tell.
Last month a doctor took me off of diltiazem, a calcium channel blocker which he and a neurologist said can cause neuropathy. Even though I have been taking 2mgs of sub ligual B12 he still insisted I take an injection of B12 every week for six weeks and thiamine.
I immediately felt a difference from stoping the diltiazem and the tingling in the hands went away, some dumbness still there. For the last three weeks I have seen changes like: my feet hurt more - could not feel anything before, Of course, more energy, and my nerves overall seem to be more settled.
**Let me say this, hurting feet, don't be sorry. The new neurologist who ran a conduction test on my legs was puzzled as how I can walk at all. The other doctor's nurse also asked how I can walk. So in pain's defence let me say if it was not for the pain I would not know where my feet were to be able to walk. I can tell the range/position of my feet because I know expactly where the cause of the pain is...the toes on my feet. The neurologist had not heard of anyone adapting to neuropathy like this.
So, everything seemed to be the same with the ben... Perhaps if taking it with no other changes in my life, I could attribute a little improvement to it.
I would try anything, especially if it was only $20 for four months trial. We are not all the same so it might be what you need. I'm becoming a B12 injection convert.
I bought it from ***************, 120 ct, 80mg of ben..., and 54mg of thiamin for a little under $10.
The idea of an oil based thiamine sounds great. However remember* vitamin theraphy is slow especially since you are fighting a condition that has taken, in my case, 10 years to reach the point where it is today. After 4 months I can't say that there has been any improvement I can tell.
Last month a doctor took me off of diltiazem, a calcium channel blocker which he and a neurologist said can cause neuropathy. Even though I have been taking 2mgs of sub ligual B12 he still insisted I take an injection of B12 every week for six weeks and thiamine.
I immediately felt a difference from stoping the diltiazem and the tingling in the hands went away, some dumbness still there. For the last three weeks I have seen changes like: my feet hurt more - could not feel anything before, Of course, more energy, and my nerves overall seem to be more settled.
**Let me say this, hurting feet, don't be sorry. The new neurologist who ran a conduction test on my legs was puzzled as how I can walk at all. The other doctor's nurse also asked how I can walk. So in pain's defence let me say if it was not for the pain I would not know where my feet were to be able to walk. I can tell the range/position of my feet because I know expactly where the cause of the pain is...the toes on my feet. The neurologist had not heard of anyone adapting to neuropathy like this.
So, everything seemed to be the same with the ben... Perhaps if taking it with no other changes in my life, I could attribute a little improvement to it.
I would try anything, especially if it was only $20 for four months trial. We are not all the same so it might be what you need. I'm becoming a B12 injection convert.
vipergg22
01-21-2006, 10:11 PM
Well it's been just about a week and already I'm seeing a difference , a definete lessening of the pins and needles and burning symptoms . It will be interesting to see if things continue to get better . I'm "cautiously optimistic at thing point So far no side effects whatsoever . I'll report back in 2 or 3 weeks . This is certainly better than taking the stuff the doctors give which is supposed to be used for brain seizures (neurontin). Took that stuff and felt like a walking zombie.
Jagee
01-30-2006, 11:38 AM
I just ordered a bottle to try.Im running out of fixers which thry are not.But i received me pains from chemo and or radiolgy or both.Have been trying to live with it since 2002 Tha veterans hospital can't seem to touch the pain.Ive had nerve blocks done and different antidepresants given to me to no avail.Heres a list that i can remember.Tramadol/Paxil/Effexor/Wellbutrin/Neurontin.Before 30 days of taking these i would have some real bad side effects.Hoping to find something for relief someday soon.
vipergg22
01-30-2006, 01:02 PM
All I can say is that this stuff seems to be working on my severe PN that i have in both feet . It's been quite awhile (years) since my feet have felt as good as they do . I still have quite a ways to go due to the severity of my PN but I am cautiously optimistic at this point . It has greatly tempered the burning and pins and needles feeling and it seems to be helping with the cramping type pain I had in both feet too , the reason I'm optimistic is I have only been taking it for a couple of weeks and I'm already seeing results . I can even feel a little of the cold tile floor in one of my feet , it been a long time since I could feel anything in either foot . I'll keep posting here as things go along , will definetly buy a second bottle at this point , there may be hope yet . A good source can be found at benfotiamine-dot-net .
vipergg22
02-01-2006, 09:50 PM
I just ordered a bottle to try.Im running out of fixers which thry are not.But i received me pains from chemo and or radiolgy or both.Have been trying to live with it since 2002 Tha veterans hospital can't seem to touch the pain.Ive had nerve blocks done and different antidepresants given to me to no avail.Heres a list that i can remember.Tramadol/Paxil/Effexor/Wellbutrin/Neurontin.Before 30 days of taking these i would have some real bad side effects.Hoping to find something for relief someday soon.
You'll need to take at least 600 mg a day . Taking only 1 or 2 capsules won't do much . I have been using 600-750 mg a day .
You'll need to take at least 600 mg a day . Taking only 1 or 2 capsules won't do much . I have been using 600-750 mg a day .
6foot3
02-02-2006, 04:04 PM
2 mgs is too low for methylcobalamin .You need at least 30 to 40 mgs a day if it will work..
razz123
02-02-2006, 05:57 PM
2 mgs is too low for methylcobalamin .You need at least 30 to 40 mgs a day if it will work..
Are you sure ?
My bottle of B12(methylcobalamin) has 1mg tabs. Does it mean I have to take 40 of them everyday to get full benefits. Are you sure you did not mean "mcg" ?
Are you sure ?
My bottle of B12(methylcobalamin) has 1mg tabs. Does it mean I have to take 40 of them everyday to get full benefits. Are you sure you did not mean "mcg" ?
bellsudev
02-08-2006, 04:43 AM
When you take B1 you have to make sure to increase your B2 if you are taking large amounts and also include a B complex 100, taking only one of the B's will cause you to become deficient in the other one's. Also with B12 you need to take folic acid as these two vitamins mask each other.
I take both B12 and B1 and have found the B1 to help with deep pain in the muscles, and definately helped me with my feet, it seems as though it has been working in the reverse for me. I started the B12 first but did not notice much of an effect with it although I have read where others have had a lot of success with it only over longer periods of time, but it was the B1 that really made a big difference.
Calcium and magnesium are also very important as they will cause cramping, restless leg syndrome, leg pains, toes and fingers can become painful, achy and literally start to draw inward, and a deficiency in these can cause an increased feeling of coldness, seizures, and tremors. They help with over all muscle pain as well. :)
I take both B12 and B1 and have found the B1 to help with deep pain in the muscles, and definately helped me with my feet, it seems as though it has been working in the reverse for me. I started the B12 first but did not notice much of an effect with it although I have read where others have had a lot of success with it only over longer periods of time, but it was the B1 that really made a big difference.
Calcium and magnesium are also very important as they will cause cramping, restless leg syndrome, leg pains, toes and fingers can become painful, achy and literally start to draw inward, and a deficiency in these can cause an increased feeling of coldness, seizures, and tremors. They help with over all muscle pain as well. :)
vipergg22
02-08-2006, 10:09 AM
When you take B1 you have to make sure to increase your B2 if you are taking large amounts and also include a B complex 100, taking only one of the B's will cause you to become deficient in the other one's. Also with B12 you need to take folic acid as these two vitamins mask each other.
I take both B12 and B1 and have found the B1 to help with deep pain in the muscles, and definately helped me with my feet, it seems as though it has been working in the reverse for me. I started the B12 first but did not notice much of an effect with it although I have read where others have had a lot of success with it only over longer periods of time, but it was the B1 that really made a big difference.
Calcium and magnesium are also very important as they will cause cramping, restless leg syndrome, leg pains, toes and fingers can become painful, achy and literally start to draw inward, and a deficiency in these can cause an increased feeling of coldness, seizures, and tremors. They help with over all muscle pain as well. :)
Well said , when I ordered the refill for benfotiamine I got the neuropathy support formula , it has the benfotiamine , B12 (the more absorbable type) , folic acid and a couple of other "B"s . Not cheap but if it continiues to give me relief I'll pay it after putting up with severe PN for 7 years . I could see myself slowly going downhill and had visions of not being able to walk by the time I am 60 , i'm 48 now . It stinks not being able to run around with my 8 year old twins because of this . At least they feel somewhat better now so who knows down the road , we can only hope.
I take both B12 and B1 and have found the B1 to help with deep pain in the muscles, and definately helped me with my feet, it seems as though it has been working in the reverse for me. I started the B12 first but did not notice much of an effect with it although I have read where others have had a lot of success with it only over longer periods of time, but it was the B1 that really made a big difference.
Calcium and magnesium are also very important as they will cause cramping, restless leg syndrome, leg pains, toes and fingers can become painful, achy and literally start to draw inward, and a deficiency in these can cause an increased feeling of coldness, seizures, and tremors. They help with over all muscle pain as well. :)
Well said , when I ordered the refill for benfotiamine I got the neuropathy support formula , it has the benfotiamine , B12 (the more absorbable type) , folic acid and a couple of other "B"s . Not cheap but if it continiues to give me relief I'll pay it after putting up with severe PN for 7 years . I could see myself slowly going downhill and had visions of not being able to walk by the time I am 60 , i'm 48 now . It stinks not being able to run around with my 8 year old twins because of this . At least they feel somewhat better now so who knows down the road , we can only hope.
vipergg22
02-10-2006, 07:58 PM
When you take B1 you have to make sure to increase your B2 if you are taking large amounts and also include a B complex 100, taking only one of the B's will cause you to become deficient in the other one's. Also with B12 you need to take folic acid as these two vitamins mask each other.
I take both B12 and B1 and have found the B1 to help with deep pain in the muscles, and definately helped me with my feet, it seems as though it has been working in the reverse for me. I started the B12 first but did not notice much of an effect with it although I have read where others have had a lot of success with it only over longer periods of time, but it was the B1 that really made a big difference.
Calcium and magnesium are also very important as they will cause cramping, restless leg syndrome, leg pains, toes and fingers can become painful, achy and literally start to draw inward, and a deficiency in these can cause an increased feeling of coldness, seizures, and tremors. They help with over all muscle pain as well. :)
I agree , I have taken high dose B12 before without much success , but as soon as I started the benfotiamine you could start to feel something different . The feet continue to get better , less pain and tingling . I can walk more normally . Pain in the knees has gone away completely . Can almost go up and down stairs normally . Before starting this supplement i was getting to the point of going down the stairs one step at a time if you know what I mean (I'm 48 ) . Can get out of bed in the morning now and my knees don't hurt . Generally just feel better with more energy . This is just added stuff I just wanted the burning and tingling moderated when I first started , this was my only goal . Hopefully it will continue.
I take both B12 and B1 and have found the B1 to help with deep pain in the muscles, and definately helped me with my feet, it seems as though it has been working in the reverse for me. I started the B12 first but did not notice much of an effect with it although I have read where others have had a lot of success with it only over longer periods of time, but it was the B1 that really made a big difference.
Calcium and magnesium are also very important as they will cause cramping, restless leg syndrome, leg pains, toes and fingers can become painful, achy and literally start to draw inward, and a deficiency in these can cause an increased feeling of coldness, seizures, and tremors. They help with over all muscle pain as well. :)
I agree , I have taken high dose B12 before without much success , but as soon as I started the benfotiamine you could start to feel something different . The feet continue to get better , less pain and tingling . I can walk more normally . Pain in the knees has gone away completely . Can almost go up and down stairs normally . Before starting this supplement i was getting to the point of going down the stairs one step at a time if you know what I mean (I'm 48 ) . Can get out of bed in the morning now and my knees don't hurt . Generally just feel better with more energy . This is just added stuff I just wanted the burning and tingling moderated when I first started , this was my only goal . Hopefully it will continue.
elphaba
04-16-2006, 02:35 AM
I've only been taking the Benfotiamine for a couple of weeks, since April 2, 2006 and I think I can tell a difference. Am hopeful that I am getting some lessening of the pain. I'm trying to avoid taking neurontin.
I've been taking methly B12 and a B-100 complex for a couple of years so I've already been getting the Thiamine. Maybe this method for the thiamine using benfothiamine is somehow more efficient. It's been known to happen.
I'll try to keep y'all posted.
I've been taking methly B12 and a B-100 complex for a couple of years so I've already been getting the Thiamine. Maybe this method for the thiamine using benfothiamine is somehow more efficient. It's been known to happen.
I'll try to keep y'all posted.
6foot3
04-16-2006, 08:14 AM
Are you sure ?
My bottle of B12(methylcobalamin) has 1mg tabs. Does it mean I have to take 40 of them everyday to get full benefits. Are you sure you did not mean "mcg" ?
I appologize Razz as i let this thread slip my mind as this was asked back in Feb, but if you happen to read this then im answering ''mg'' not ''mcg''. They are sold in 1 mg and 5 mg with 1 mg being a maintenance for those who are healthy but for Neuropathy or Bell's Palsey the research shows that 30 to 40 mg a day for regenerating the neurons. (life extension research) (5 mg lozenges) And you want the Sublingual as they hit the Blood stream quickly without having to worry about ''Intrinsic Factor'' in the small intestine......Again sorry for posting late....
My bottle of B12(methylcobalamin) has 1mg tabs. Does it mean I have to take 40 of them everyday to get full benefits. Are you sure you did not mean "mcg" ?
I appologize Razz as i let this thread slip my mind as this was asked back in Feb, but if you happen to read this then im answering ''mg'' not ''mcg''. They are sold in 1 mg and 5 mg with 1 mg being a maintenance for those who are healthy but for Neuropathy or Bell's Palsey the research shows that 30 to 40 mg a day for regenerating the neurons. (life extension research) (5 mg lozenges) And you want the Sublingual as they hit the Blood stream quickly without having to worry about ''Intrinsic Factor'' in the small intestine......Again sorry for posting late....
Jagee
04-28-2006, 02:15 PM
I thought i would report bk to you ,After the 3rd bottle 150 mg 6caps a day at 900mg still nothing happened,But it was worth a try and im glad it works for you. God Bless
sharonv777
05-04-2006, 08:38 PM
hi,
my name is sharon. i have had pn for 11 yrs. it is so severe that i have been on methadone 40 mg. 3 times a day. i am not on that anymore. then i used the duragesic patch it all worked but i hate being tied to pills and patches. now i am cold turkey and miserable. i also read alot about the benfotamine and methyl b12. i want to know if it is working? i need sleep and my feet keep me up all night. i am barely wearing shoes. i'll take any information you have. let me know where you buy the bon and methyl b12.
thanks
my name is sharon. i have had pn for 11 yrs. it is so severe that i have been on methadone 40 mg. 3 times a day. i am not on that anymore. then i used the duragesic patch it all worked but i hate being tied to pills and patches. now i am cold turkey and miserable. i also read alot about the benfotamine and methyl b12. i want to know if it is working? i need sleep and my feet keep me up all night. i am barely wearing shoes. i'll take any information you have. let me know where you buy the bon and methyl b12.
thanks
booemmy
05-04-2006, 10:08 PM
Sharon, I have pn too,I was up most of last night with the foot pain,I only slept 3 1/2 hrs,Doctor won't give me anything but Hydrocodone/acetaminophen 5/500.One it does nothing for the pain, and two it does'nt help me sleep.He increased it from 2 at bedtime and 1 during the day ,to two every hrs. I have never heard of Benfotiamine , does it help. I just can't get my M.D to really help me.I just don't know what to do to get info and help. I hope you get some relief of the pain,and I wish I could help in some way.All I can say is that i know what your going through.booemmy :wave:
booemmy
05-05-2006, 09:41 PM
6ft3 Iread about you taking Benfotiamine for Neuropathy.I can't find this in a sublingual form. I can't absorb B12 through my stomach so I get monthly shots.Can you or anyone tell me where I can get it. I will try anything to get rid of the pain ans numbness.booemmy :confused:
moderator2
05-06-2006, 12:13 PM
Please honor your membership agreement.
Please read and follow the posting rules.
Please read and follow the posting rules.
booemmy
05-06-2006, 09:15 PM
vipergg22-- I'm sorry I asked you where to get the Benfoitamine. I forgot we can't ask for that info.SOOO can I take them in a capsul and still get the benifits of taking them sublingually? I can't absorb b12 in my stomach.thanksbooemmy :confused:
vipergg22
05-06-2006, 09:43 PM
vipergg22-- I'm sorry I asked you where to get the Benfoitamine. I forgot we can't ask for that info.SOOO can I take them in a capsul and still get the benifits of taking them sublingually? I can't absorb b12 in my stomach.thanksbooemmy :confused:
The answer is yes , this is a more highly absorbable form of thiamine (not B12) . Give it a couple of months , if you don't see any results within a couple of months it probably won't help. It has certainly helped me though so far . Good luck , no one should have to live with PN . I would take 600 mgs per day to start , 2 in the morning with breakfast and 2 at night with dinner.
The answer is yes , this is a more highly absorbable form of thiamine (not B12) . Give it a couple of months , if you don't see any results within a couple of months it probably won't help. It has certainly helped me though so far . Good luck , no one should have to live with PN . I would take 600 mgs per day to start , 2 in the morning with breakfast and 2 at night with dinner.
booemmy
05-07-2006, 04:45 AM
vipergg22 thanks for the info.These Healthboards are WONDERFULL, the information that I have gotten from people who suffer with problems like me ,is so appreciated.I just keep asking and hopefully I will understand how this disease will enentually affect me. Again thanks,booemmy :angel: