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-   -   Nutrition help for neuropathy? (https://www.neurotalk.org/peripheral-neuropathy/18977-nutrition-help-neuropathy.html)

MelodyL 05-09-2007 09:07 PM

Yeah, I'm interested too why the doctor thinks your B-12 level is too high!!!

Try and get your exact B-12 level.

Just got mine today, it's 944 and I'm striving for higher. When I got the blood test last Wednesday, I had been on the methyl B-12 for 3 to 4 days. It was enough to get it in my system, obviously. I had never done a b-12 level before.

Melody

rose 05-10-2007 12:05 AM

Why? :( Unfortunately, it's called ignorance.

rose

daniella 05-10-2007 11:32 AM

Hi. I had my ssep which is worse then the emg its like a few minutes of constant shocks 4 times. I also had another emg so will see. I got my b12 level and it was 2000 and that was just from taking the complex b for 3 weeks. So now do I still take the b12? I started back with the b complex cause my syptoms have gotten worse since stopped. I am suppose to go to a pain clinic on Mon but think I may reschedule until I know more cause I fear them making me worse. Just from that emg/ssep I'm in so much pain. Also all the meds have made me sick,the pt made me worse so I don't know what to do about the pain clinic cause what happens if they make me worse since we don't have a dx yet. Any thoughts? I'm looking into other neurology places like that one in Chicago after these results come.

dahlek 05-10-2007 04:04 PM

Which is making you worse?
 
IF it's the PT, you might be overdoing it just a bit..once that 'heavy' feeling starts creeping in...speak up and STOP! As for the pain clinic itself, what are you doing there that's triggering things?
If you read some old posts, you'll find that lots of good, bad reactions can happen, as well as no reaction at all.
The top 'sticky' includes a post listing a large number of medications that could be tried. I truly hope there's one there for you.
I know you've been reading hard and asking lots of very relevant questions. It's a lot to take in while you hurt like the 'Dickens'! Hang in there - j

nursegirl 05-10-2007 04:20 PM

I'm sure you're right rose - I just thought it would be interesting to hear what he is thinking. Cuz doctors sometimes need "continuing education" in these matters ! Maybe daniella could take a B12 info sheet to him (he'd probably freak out - LOL).

Careful with your B6 levels from a lot of B-complex. Too much and it might cause PN-like symptoms FYI.

"B6 - Doses of up to 50 milligrams of vitamin b6 are generally considered safe; however, taking over 200 milligrams per day of pyridoxine (aka vitamin b6) can cause neurological problems in some individuals." - <<from Vitaminstuff website>>

So extra B12 can be helping while too much B6 is hurting...

BTW, you all should know that I keep saying this cuz I was MEGA-dosing on B-complex before (- rather that B12 only -) and it had an OPPOSITE of good effect! :)

So now I take the regular B-complex dose, mega-dose the B12 and for me it works great!

Liz

rose 05-10-2007 04:33 PM

Your 2000 B12 result (on just a B complex) shows that you do not malabsorb severely. You may or may not be headed in that direction.

I would take a reasonable B complex, at least 1000 mcg methylcobalamin B12 at a different time, and you can find an excellent thread about magnesium by mrsd. I believe it is at the vitamin forum.

I wish I had known to take methylcobalamin right away. If I had begun taking 5000 mcg methylcobalamin right away, instead of getting merely adequate treatment after eventually being diagnosed, I would be a lot better off.

rose

rose 05-10-2007 04:38 PM

Liz,

I'm always interested in what they say. Frustrated usually, but interested. Sure wish more of them would rely less on the pharmaceutical reps for their continuing education :eek:

My smart-*** reply was to someone else's question, I think. :confused:

rose

daniella 05-11-2007 08:55 AM

Hi. So if I take a b complex, womens 1 a day viatmin, and then seperate take 1000mcg of b12 that would not be too much b12 with by levels and there would be no harm? It has been a week too since the doc said to wait a week. I also take magnesium and glucosamine msn. Also for my blood work I'm skeptical because as I said though at the end of my weight gain when I was severly anorexia/under and ended up in 2 cardiac units my blood work was fine. Like how can that be? So I often am skeptical but what can one do? Thanks again

rose 05-11-2007 04:04 PM

I have been looking at everything I can see about methylcobalamin for years. I know of absolutely no reason to fear harm if you took dozens of those 1000 mcg methylcobalamins every day. A possibility of help, yes. Danger, no.

It's amazing how ill, even near death, some can be and have a good lab report. I was literally dying for lack of B12, and my CBC results were smack down the middle.

rose

jarrett622 05-12-2007 01:19 AM

I have to agree with Rose. My doctor looked at me when I her told what was going on with the B-vitamins and said, "We tested you last summer and your levels are fine." I had to point out that the test results aren't always accurate. She agreed after a few moments of thought. Besides which, the proof isn't in the test results but in the fact that my PN is almost gone already.

nursegirl 05-12-2007 02:41 AM

Daniella, yeah I think you are on the right track with that vitamin combination. I wish you success!

Also - this is sort of a "theoretical" question to put out there for everyone.

Are the mega amounts of B12 helping us with PN because we are actually deficient....OR.......and this is just a thought I had........maybe huge amounts of B12 counteracts some sort of underlying problem that has yet to be discovered/identified in the medical community. You know......since docs don't really know how to treat neuropathy, they must not be 100% clear on all the causes/mechanisms.

I'm probably way off the deep end - but it was a thought I had!

Liz

daniella 05-12-2007 05:18 AM

Thank you. I'm going to start what I said cause I'm loosing hope. Since I have started seeing this neuro I have gotten so much worse. The ssep test and emg really flared me up and basically have been crying through the vicadin for the past two days.All the meds,pt,tests,other ideas like the shoe this neuro suggests has made me worse. I'm going to see after the results but feel I need to look for someone else unless this test show something and he has a direction no more guesses.This week my mom is calling the chicago place and sending my reports to other neuro here cause I can't live like this and barely can move. I will agree with Rose. Like I said I was flat lined in the er from such a low palse but a few days before my blood work was fine. I will say at that time I was destructive in my eating disorder but you would stil think blood work from being that malnurished and underweight would of showed something. I don't know what the answer is and that is what is frustrating. I guess finding docs that really dig deep and even if there is a 1 percent chance will go to that length.

mrsD 05-12-2007 07:05 AM

Quote:

Originally Posted by nursegirl (Post 98509)
Daniella, yeah I think you are on the right track with that vitamin combination. I wish you success!

Also - this is sort of a "theoretical" question to put out there for everyone.

Are the mega amounts of B12 helping us with PN because we are actually deficient....OR.......and this is just a thought I had........maybe huge amounts of B12 counteracts some sort of underlying problem that has yet to be discovered/identified in the medical community. You know......since docs don't really know how to treat neuropathy, they must not be 100% clear on all the causes/mechanisms.

I'm probably way off the deep end - but it was a thought I had!

Liz

The oral methylcobalamin is not typically absorbed well...you only get about 10% from it.
Injections of cyanocobalamin DAILY--which is what doctors do for the severely depleted patient (many of them elderly) may be done as an emergency effort (typically 7 days or less).

B12 and folate are involved with methylation reactions in the body. If you look up methylation you can see what a huge subject it is.
example:
http://www.lef.org/magazine/mag2000/...ort_b12_1.html

This is complex biochemistry.

Jelly Bean 08-23-2011 06:57 PM

Pretty good advice except don't cook with olive oil, it is unstable (in that it changes molecularly when heated) coconut oil and butter are stable to cook with, olive oil great on salads or cold, not heated. And margarine is plastic, butter is real. Changing your lifestyle is the most important thing, watch the food you eat, make sure its mostly plant base, read the book authored by Dr. Thomas Rau regarding eating for an alkaline balance. Exercise too, read up on the no-nos, sugar, soda, white flour, alcohol except on occasion, etc. etc. Take care and keep educating yourself.
Quote:

Originally Posted by Wing42 (Post 95266)
Daniella,

There's a lot on nutrition for PN in the stickies section. My posting there, at http://neurotalk.psychcentral.com/sh...p?t=177&page=2 (scroll down to item's #18 - 20) discusses this topic.

Basically, what helps your heart and general health helps your nerves function and heal. You know the drill:

- whole grain foods (good balance of fiber, good fatty acids, micronutrients, slow absorbing carbs) ,

- lots of soluble fiber from grain, beans, nuts, fruit and vegetables (absorb cholesterol and toxins from the intestine and help maintain healthy intestinal environment),

- little or no concentrated sugar from any source, including fruit and juice (really bad...stresses the liver, the pancreas, directly stresses nerves, increase inflammatory response),

- small amounts daily of high quality protein from beans, fish, eggs, small servings of lean meat (the basic building blocks of cells),

- and as MrsD stressed and me too in the sticky, a good balance of omega-3 and omega-6 oils (reduce plaque, reduce inflammation, basic building block of nerve myelin sheath).

My wife and I used to be meat-and-potatoes folks, but over the years, as runners and fitness buffs we slowly changed over to a healthy diet. Start out by substituting: non-fat milk for regular or low-fat (you get used to it within a week) and then low-fat soy milk. Absolute no-nos starting now are regular sodas (about 10 tsp. of sugar per 12 oz.), sweetened coffee drinks (a vente Frappacino has about 30 tsp. of sugar!), fruit juice (same as soda, except it's fructose which is even more of a shock to you system than sucrose). Slowly switch to healthier meats or tofu, and cut portions. I hardly eat beef or pork anymore, preferring fish, tofu, or a bit of lamb occasionally because its grass fed, lean, and hormone and antibiotic free. Pass on the cake and go for fruity deserts, and eventually fresh fruit for dessert. When you cook, use olive or canola oil. I fry with olive oil almost exclusively. It's especially delicious with eggs, and in baked goods. Use Smart Balance or comparable as a spread, and eventually use NO fats on toast. On toast, my wife and I went from butter to margarine to Smart Balance to just a thin film of Smart Balance to jam only on toast...and then switched from jams or preserves to spreadable fruit that I heap on without guilt. We also went from wheat bread to whole grain breads...now wheat and white bread taste like pablum or mush to us. Your taste changes quickly to conform to what you're eating, so be adventurous and stick with the healthier foods you like.

Diet isn't enough. You also need to exercise. But that's for another thread.

Your body mass index (BMI) should be less than 25, and ideally less than 22 (see http://www.nhlbisupport.com/bmi/ ) . My BMI is 25.1 so thanks for your post. Its a wake-up call for me.

All drugs are toxic to some degree. They stress the liver and kidneys which have to eliminate them. This is something to be aware of in your search for health. As you get healthier, you might be able to reduce your daily drug intake under a doctor's supervision. We tend to add drugs as we age, and continue ones that aren't necessary. Except for carefully calibrated amounts of specific drugs to control life threatening things, we can often safely cut back or eliminate some.

You can cheat every once in a while with a clear conscience because the only angels are in heaven. Negative emotions make our life worse and our PN much worse so don't beat yourself up over any of the above. It's not your fault that you have PN. jAll of us were blind-sided by it.


darlindeb25 08-23-2011 07:24 PM

I do cook with olive oil, you just have to make sure to keep the heat low, not let it burn, then it's fine. I can't use butter (dairy intolerant), can't use vegetable oils (usually contain corn or soy or both, can't have either), not sure I can use coconut oil either. Have been thinking about trying grapeseed oil, just haven't done it yet.


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