advertisement
Reply
 
Thread Tools Display Modes
Old 12-19-2012, 04:41 PM #11
Jesse M Jesse M is offline
Member
 
Join Date: Oct 2012
Location: I live in Chicago - a very diverse city.
Posts: 126
10 yr Member
Jesse M Jesse M is offline
Member
 
Join Date: Oct 2012
Location: I live in Chicago - a very diverse city.
Posts: 126
10 yr Member
Default

Quote:
Originally Posted by Sallysblooms View Post
I get my Benfotiamine from Life Extention Foundation. It is a wonderful site. I love the webinars and help you get there. My doctor uses several brands like Designs for Health for supplements he advises, and he likes Life Extension Benfotiamine, Eye health supplements and others. I get my protein powder there also.

I found this brand at GNC "Vitamin B-1 300" is that good to start with? I couldn't find the Benfotiamine yet. The pills I have are 300mg each. Do I take this once a day at 1 time, or am I supposed to break them into 2 and take them at different points in the day? It's important, as I could not find this answer anywhere. Maybe I can cut the 300mg into 2 - is that wise? ...please help.

Last edited by Jesse M; 12-19-2012 at 10:56 PM.
Jesse M is offline   Reply With QuoteReply With Quote

advertisement
Old 12-20-2012, 11:12 AM #12
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

Quote:
Originally Posted by Jesse M View Post
Thanks for the links. They have been very helpful.

In fact, It's hard to believe that I was NOT told about Benfotiamine, since I asked my neurologists over and over again if there was some-kind of vitamin or natural substance that could ease my PN pains and they simply answered "no." Although it was my therapist that insisted I take the B12.

After reading your links, I feel that I should have been taking Benfotiamine along with my other supplements long ago. I've never taken a Benfotiamine supplement before. I seen 1 type at my GNC -the reason I didn't buy it before was because I thought it was essentially the same as B12 and I didn't want to overdose by taking 2 supplement of the same make. Now I know they are not the same, but very different vitamins.

;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;; ;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;;; ;;;;;;;;;;;

mrsD: I want to ask you a few questions about yourself, and I hope I'm not rude or prying in any sense.

Do you work in the medical field? - you have an astonishing amount of helpful biomedical knowledge.

Could you tell me your personal story on PN - as in how you got it? Are you a diabetic? And how do you feel now, as in do you feel your life has improved on a daily basis?

I hope I'm not asking too many personal questions, just that I'm curious as to how well you have fared with this affliction.

--I also wanted to personally thank you for giving me some advice that really helped me. For example: I would never have started taking the right kind of magnesium without your advice.
If you look at my profile, you'll see my history.

I have told my story so many times, I am not going to do it again. enough for me. I've been online for over a decade now.
I started with PN in my feet and hands when I was about 30 yrs old. Mine began with hypothyroidism, and now I have some insulin resistance to deal with.
If you read the board consistently you can piece my history together yourself.
I prefer NOT to use drugs for my PN. The only one I have now RX is tramadol, and I only take 1/2 of that when in significant pain at night which is not often. Amitriptyline did not work for me, and it raised my blood sugar...so I only took it for a week.

Everything I put up here is substantiated in many studies.
I always put links up for people to read and decide for themselves, what they want to do. I know how to search for things, quickly because I know about them and know how to make accurate keywords. I learned that when I first started using the internet. I also type very fast, and that saves me time.
I search something every day and when I find links to help with PN I put them up here, for everyone to see.

I am very experienced with supplements AND drugs. 40+yrs.
I maintain a degree of privacy online for several reasons. And I would appreciate respect for that. This IS the internet after all.

If you start with regular thiamine, which is very inexpensive, and you only found 300mg tablets?????... Thiamine typically comes OTC in 50mg and 100mg tablets. You can start at 100mg a day and work up to a max of 300mg a day. This can work and give a clue as to being helpful. When that happens you can switch to the better form benfotiamine (since you cannot find it locally).

BENFOTIAMINE is different, and handled in the body differently.
So once a person is on it for while I prefer to suggest that 150mg a day in enough. I don't want people to develop vitamin dependency issues, and because I am conservative, I don't really believe in high doses of things...as research is not closed on these topics.

If you choose the thiamine 300mg you found, break it in half and take the 1/2 tablet morning and night. Regular thiamine causes an odor, in some people, but it is harmless. The Benfotiamine has no odor that I can detect in myself, and others don't report that either.

You could go to WalMart or Target or anywhere and find smaller dose tablets for less than $4.00/100. GNC has hugely inflated prices on things as well as many "health food" specialty stores who are profit driven. WalMart has an excellent supplement aisle now, with quality manufacturers. Look there, for better doses of thiamine. The majority of generic items in large stores in the midwest all come from Perrigo company. A quality place for decades.
http://www.perrigo.com/
http://en.wikipedia.org/wiki/Perrigo
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Old 12-20-2012, 02:27 PM #13
Jesse M Jesse M is offline
Member
 
Join Date: Oct 2012
Location: I live in Chicago - a very diverse city.
Posts: 126
10 yr Member
Jesse M Jesse M is offline
Member
 
Join Date: Oct 2012
Location: I live in Chicago - a very diverse city.
Posts: 126
10 yr Member
Default

....First off, I want to genuinely apologize if I offended you in any way. I should have had the common sense to look up the things I wanted to know concerning my curiosity about you. You have helped me more than some of my doctors at this point and that is very valuable to me. I am truly impressed and grateful for your advice.

There may have been a sense of desperation in my posts earlier. I have had bad flare-ups last as long as 7 days before, but not past that...But this one made me particularly more depressed than the others. The weather here has been insane, too -over a week of damp, cold rain and waves of thick cartoonish fog -very odd for December in Chicago. Maybe that had something to do with it.

I did take a 300mg tablet of the B1 (as Thiamine hydrochloride) As for the BENFOTIAMINE I will have my daughter order it from the net. I searched desperately for it in 5 stores yesterday. When I went to GNC, they said they didn't have it at all, the same was said in Cub Foods, Walgreens and CVS.

However, my doctor told me that for now -the B1 I bought is fine and it should help.

I don't and can't take any medications for pain at all. In fact, I hadn't taken any pain medications since I got PN 6 months ago, so dealing with extremely bad flare-ups has been a real struggle for me.

As of now, I'm feeling quite better than yesterday. Any advice that you or anyone else can give me concerning my condition would be gratefully appreciated as always.

Last edited by Jesse M; 12-21-2012 at 02:17 AM.
Jesse M is offline   Reply With QuoteReply With Quote
Old 12-21-2012, 02:22 AM #14
Jesse M Jesse M is offline
Member
 
Join Date: Oct 2012
Location: I live in Chicago - a very diverse city.
Posts: 126
10 yr Member
Jesse M Jesse M is offline
Member
 
Join Date: Oct 2012
Location: I live in Chicago - a very diverse city.
Posts: 126
10 yr Member
Default

I never heard of the term "Vitamin dependance" before and until recently, it never occurred to me that vitamins are much like medicine in many ways. I was wondering if quitting a helpful vitamin suddenly could cause withdrawal symptoms, as a medicine could?
Jesse M is offline   Reply With QuoteReply With Quote
Old 12-21-2012, 07:16 AM #15
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

Yes, it can. But typically it only happens at very high mega doses.
It was first illustrated in people following Linus Pauling, and taking massive multigram amounts of Vitamin C (more than 10 grams a day and much higher).

People also inherit dependencies that are genetic...requiring high doses for life. Some babies are born with B6 dependency, and have seizures without high dose therapy.

It remains not too common, however. Dr. Bruce Ames PhD, biochemist, believes many people have genetic errors in B vitamin chemistries, like the MTHFR polymorphisms, but affecting other B's.... It is his belief than alot of illness is due to inability to run enzyme systems because NOT ENOUGH of certain B's are being consumed for these errors.

So the best way to supplement is to be sensible about it.

You can Google "vitamin dependency" and learn more about it.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Old 12-21-2012, 10:06 AM #16
debter debter is offline
New Member
 
Join Date: Dec 2012
Location: florida
Posts: 1
10 yr Member
debter debter is offline
New Member
 
Join Date: Dec 2012
Location: florida
Posts: 1
10 yr Member
Default

I just went to my foot doctor because I had a very bad achilles problem and severe leg and foot cramping which i think was brought on by taking budesonide and a ciprofloxin eye ointment. I stopped both those medications and my other dr then put me on apriso for microscopic collitis. started that this last monday and on the same day while at the foot dr we also discussed the numbness in the balls of my feet. I had been there before for that problem. he thinks it is neuropathy even tho i had a nerve test for that. he said it is missed because it is not advanced enough. the foot dr gave me naprosyn. Anyway after 4 days of apriso and naprosyn my feet are burning, numb, painful, hard to walk. called the gastor dr this am but they are closed until monday. I think i should quit the apriso, does anyone know if that causes neuropathy to get worse? and continue the naprosyn. also, i think the neuropathy was actually better with the budesonide. what do you think? my foot dr gave me a list of supplements for neuropathy..vit c 1000mg, alpha-lipoid acid 100mg, n-acetyl-cystine 600mg, l-caritine 500mg, selinium 200mg, b-complex 100mg, b-12.
debter is offline   Reply With QuoteReply With Quote
Old 12-21-2012, 10:45 AM #17
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

Apriso depletes folic acid. It would help to take activated folic acid called methylfolate. This bypasses conversion in the body, which is broken in 10-30% of people.

The ALA...is it r-lipoic stabilized? If not 100mg is not enough.
Switch to R-lipoic stabilized (the new active soluble form) and 100mg a day is enough. If you use the old mixture ALA you would need at least 600mg a day or more. It must be taken on an empty stomach too.

The B12 should be methylcobalamin, the active form. Same reason as the methylfolate. Ideally it is best to have testing before starting to see if you are really low. This information is useful before beginning. This has to be taken on an empty stomach too.

New research suggests that selenium doses should be lower. 100mcg a day is typically the new suggestion.

Steroids like budesonide deplete many nutrients. So it is a good idea to do the B complex. But perhaps 50mg a day is enough.
This steroid also depletes potassium, zinc and magnesium.
Potassium you can get by choosing foods high in this mineral.
Same with magnesium. But some people soak in epsom salts, to enable magnesium better. If you choose a supplement, AVOID OXIDE form, and go for a chelate or SlowMag, at 1/2 the RDA daily... which is 350mg elemental a day.
This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html
You'll see it is a huge topic.

I think people with a mild colitis should try going sugar and fructose free. Fructose causes inflammation of the bowel, in 1/3 of adults in the US. Also carrageenan a common additive in many foods including dairy products is thought to irritate the bowel.

People taking steroids can also get elevated blood sugars. This can lead to PN and should be tested out. Steroids because of this blood sugar effect can flare Candida yeast in the GI tract and on the skin.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Old 12-21-2012, 01:57 PM #18
Jesse M Jesse M is offline
Member
 
Join Date: Oct 2012
Location: I live in Chicago - a very diverse city.
Posts: 126
10 yr Member
Jesse M Jesse M is offline
Member
 
Join Date: Oct 2012
Location: I live in Chicago - a very diverse city.
Posts: 126
10 yr Member
Default

To Debter:

Also (as mrsD mentioned earlier) you should get methylcobalamin. If you get B12 you should buy it separately rather than get it in a B-Formula. This is because most B12 is of the (Cyanocobalamin) and NOT "methylcobalamin" which is the better form of B12 as its absorbed by the body better.

But getting methylcobalamin might be hard to get from a local store. You may have to order it from the internet. Regular B 12 Cyanocobalamin isn't bad to start with. (I've been on it for months) If you do get it, I suggest getting the sublingual tablets (the ones that melt under your tongue).
although unproved, the sublingual pills are allegedly more easily absorbed as well.

Also if you are taking any type of Ciprofloxacin, or any other Flouriquinolone drug -I feel you should stop taking it immediately and ask your doctor for something else.

You should never take any NSAIDS with it -that includes Aspirin, Alieve, and Naproxen because this enhances the side effects of these drugs.

...I hope you feel better soon.
Jesse M is offline   Reply With QuoteReply With Quote
Old 12-21-2012, 03:34 PM #19
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

Quote:
Originally Posted by debter View Post
I just went to my foot doctor because I had a very bad achilles problem and severe leg and foot cramping which i think was brought on by taking budesonide and a ciprofloxin eye ointment. I stopped both those medications and my other dr then put me on apriso for microscopic collitis. started that this last monday and on the same day while at the foot dr we also discussed the numbness in the balls of my feet. I had been there before for that problem. he thinks it is neuropathy even tho i had a nerve test for that. he said it is missed because it is not advanced enough. the foot dr gave me naprosyn. Anyway after 4 days of apriso and naprosyn my feet are burning, numb, painful, hard to walk. called the gastor dr this am but they are closed until monday. I think i should quit the apriso, does anyone know if that causes neuropathy to get worse? and continue the naprosyn. also, i think the neuropathy was actually better with the budesonide. what do you think? my foot dr gave me a list of supplements for neuropathy..vit c 1000mg, alpha-lipoid acid 100mg, n-acetyl-cystine 600mg, l-caritine 500mg, selinium 200mg, b-complex 100mg, b-12.
This is a paper on colitis and PN occurring together:
http://www.ncbi.nlm.nih.gov/pubmed/17715640
Quote:
Acta Gastroenterol Belg. 2007 Apr-Jun;70(2):226-30.
Acute motor sensory polyneuropathy (AMSAN) complicating active ulcerative colitis with a patchy distribution.
Zezos P, Mpoumponaris A, Koutsopetras P, Vounotrypidis P, Molyvas E, Vadikolias K, Moschos I, Kouklakis G.
Source

Department of Gastroenterology and Hepatology, 424 Military General Hospital, Thessaloniki, Greece. zezosp@hol.gr
Abstract

We report a case of acute motor and sensory neuropathy during a flare of ulcerative colitis. A 28-year-old male presented with a flare of distal ulcerative colitis despite treatment with mesalamine enemas and suppositories simultaneously with rapidly deteriorating weakness and needle sensation in both legs. Neurological assessment showed axonal sensorimotor polyneuropathy affecting mainly the lower limbs and to a lesser extent the upper limbs. Colonoscopy revealed moderately to severe active ulcerative colitis with a patchy distribution involving the rectum and the right colon. Vitamin and folic acid levels were normal. Virological, immunological and other laboratory tests were negative except for positive anti-ganglioside antibodies (anti-GM1). Ulcerative colitis and polyneuropathy improved when patient was treated with immunosuppressive therapy (corticosteroids, immunoglobulin and azathioprine). Peripheral polyneuropathy is a rare extraintestinal manifestation of ulcerative colitis and it is probably associated with an autoimmune pathogenetic mechanism.

PMID:
17715640
[PubMed - indexed for MEDLINE]
Now, I'd like to ask if you if only used one tube or so of the ciprofloxacin opth ointment?
This ointment has 3 milligrams of ciprofloxacin in a gram of base. The average tube is 3.5 grams.
In comparison, the smallest oral dose is 250mg twice a day.
This is a bit of reality check...and continues below.

This link gives blood levels measured in patients using the ophthalmic ointment:
http://www.alcon.ca/pdf/Product_phar...iloxan_eng.pdf

Typical absorption into the blood stream was 1.5 to 2.5 NANOgrams per ml of blood measured.
The typical blood level of Cipro 250mg is 1200 NANOgrams per ml.

What is a nanogram?
A nanogram (ng) is, therefore, 10-9g or one billionth of a gram. This can be written as a unit in the 9th decimal place: 0.000000001g.

It is unlikely therefore, that an ophthalmic ointment would deliver much Cipro to your body, or enough to create a systemic neuropathy. It is significant for allergic reactions however.
If a neuropathy were to begin I would expect it in or around the eye first.

But also I'd like to know how much or often you used that ointment. Most people only use a product like this for temporary infections, or surgery around the eye.

I have a thread here on drugs known to cause PN...
http://neurotalk.psychcentral.com/thread122889.html

The PN could be related to your colitis. Crohn's patients sometimes get an inflammatory arthritis with their pathology.
It is a similar autoimmune effect.

The link I gave you first on this post has treatment options for colitis that has other manifestations....and that is to use other immune suppressing drugs.

Some people just cannot tolerate mesalamine products. So yes, to ask your doctor and explain your potential side effects.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Old 12-22-2012, 07:18 PM #20
Jesse M Jesse M is offline
Member
 
Join Date: Oct 2012
Location: I live in Chicago - a very diverse city.
Posts: 126
10 yr Member
Jesse M Jesse M is offline
Member
 
Join Date: Oct 2012
Location: I live in Chicago - a very diverse city.
Posts: 126
10 yr Member
Default Beer and neuropathy is it bad?

...My ongoing debate about neuropathy and PN is with a new friend I met on the net recently. He's another person other than me, that has PN from antibiotic use although it's not the same antibiotic - I feel that there is a great similarity in treating it. I could be wrong.

Here is our argument. I feel that drinking beer or any alcohol is not a good idea for anyone with PN. In a nutshell, if you can't stop drinking entirely, you should limit your alchol use and when you do, make sure to lessen the load some by drinking a small amount of beer over a long amount of time...meaning stretch out your beer by drinking slow so that you do not drink more than you should.

I feel this buffers your body from too much alcohol while your body processes the drinks. Also drinking a lot of water, as well as eating a decent meal afterwards seem to help me.

After my PN I never drank enough beer to get a hangover and I never was a heavy drinker to begin with so I "Buzz" pretty fast anyway.

But, like me, sometimes it is difficult not to drink a few cans of beer (about 4 light Beers) every other weekend or so, especially during holidays and social events (the only time I drink.)

I only drink light beer which has a fairly low alcohol content in it. I don't drink more than a six pack (most times about 3/4 beers max) and if I do drink that week it's only for that one day of the week.

My friend believes that since his PN is not from alcoholic roots that he can drink more than that. I'm not saying this guy drinks a lot. He does not, and in fact, probably drinks not much more than me, about two days out of the week and around a six pack - still that is at least double the amount that I drink. I also avoid all hard liquor. While this guy will drink a shot of Vodka from time to time.

He says that for alcohol to affect nerves, even damaged nerves, you have to drink hard liquor, or an amount of beer much larger than a 6 pack - or drink a few every other day to affect your nerves.

I'm no expert, but I disagree with this. I think alchol can start irritating your nerves after just a few beers for most people. I often feel quite well with no flare-ups for days or weeks even after I drink 5 beers, but I rarely drink that much. Truthfully I simply don't know the answers to our debate.

As he says, peoples' tolerances for alcohol are all different and points out a diabetic friend of ours with PN that drinks over a 6-pack nearly every Saturday.

I often feel some peer-pressure to drink, mainly from depression when I'm at a social event -I want to feel that happy little buzz and join the party - but I'm very wary of how much and what I drink.

Personally, I feel anyone with PN shouldn't be drinking alchol at all, but I know this could be difficult for some, including me.

Does anybody here have similar feelings on these ideas? I hope I get some replies on this as I think this is one issue that many people often think about.

...
Jesse M is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Toxic neuropathy???? MightyB Peripheral Neuropathy 26 03-03-2024 05:05 PM
Cat Induced Neuropathy melon Peripheral Neuropathy 4 02-16-2012 01:58 PM
b1 induced neuropathy Emsielee Peripheral Neuropathy 2 11-09-2011 08:05 AM
med induced neuropathy zygopetalum Medications & Treatments 11 10-04-2011 08:01 AM
HELP for chemotherapy induced peripheral neuropathy coma New Member Introductions 7 01-09-2010 08:55 PM


All times are GMT -5. The time now is 07:13 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.