If B-12 is so benign and that excesses are not harmful, what is the commotion? I can understand it for other vitamin #'s but for B-12? Isn't that like a high number of Vit C?
Mrs. D. Is everyone so either naieve or ignorant? [Yes, you have trained me well?] This reaction is absolutely silly ...to understate things -especially among the medical professional community.
It IS true that one eliminates excess B-12 as well as Vit-C so if one shows excess amounts in testing it is meaningless other than there must be more in the individuals' system to asorb. Such testing does not truly INDICATE WHAT the system IS asorbing. Am I correct? Testing for true asorbtion is quite different, again, am I correct? Many thanks in advance - j
's

The serum B12 numbers can be all over the place, as they only measure the B12 available in the bloodstream. A low number is bad, of course, as that would mean there isn't much around to BE used, but a high number doesn't guarantee that the cobalamin is making it into the methylation pathways (that's what the MMA--methylomaic acid--test helps determine).

On the other hand, I imagine a good deal is making it into Melody's metabolic pathways, as she does have a significant reaction from taking B12.

It's possible Mel's system is now flooded with B12 and she could make do with a little less dosage. I know that when my B12 serum levels were measured at 1864, I cut down from 2500mcg/day to 1000mcg/day, without apparent ill effects.

I wonder what Mel's levels would've been if she hadn't stopped taking the methylcobalamin five days before the test.

Seriously, though, my wife's PCP once questioned her high B12 levels (they're not quite as high as mine, but she takes less), and I immeditely asked, "other than masking a possible folate deficiency--and you can see my wife's folate levels are quite good--is there any known reason that a high B12 level should be cause for concern, especially when the level is explained by the patient knowingly supplementmeting with large doses?" The doctor couldn't answer, and I said "the reason you're having trouble coming up with this is there is no known B12 toxicity level--in fact, some European and Japanese studies have dosed people with neurologic disorders up to 36mg a day with no ill effects . . ." and the doctor started to laugh (they learn about me very quickly).

I think you can try asking them that question, Melody--let's see what answer you get.

Glenn:

I already did ask that question (I won't mention which doctor but it wasn't Dr. Fred).

I asked the Doctor, "what do you think about Methyl B-12", and his exact response (and he gave a grunt), was:

"Ugh, I WOULD NEVER TELL A PATIENT TO TAKE ANY B-12 UNLESS THEY WERE ANEMIC"

I said 'but it is supposed to have a positive effect on people with Diabetic Neuropathy", whereupon he grunted again and said "I don't believe it, I was never taught this in medical school, they never mentioned it would help neuropathy, and it's only prescribed for people with severe anemia".

He was so adamant I never brought up the subject again. NEVER!!!!

The only doctor (a neurologist) who LISTENED to what I said about Methyl B-12, (and sorry, don't remember her name), was a neurologist who was heading up a neuropathy department in one of the hospitals in NYC I believe.

She was the guest speaker at one of the Neuropathy support group meetings that were held in the CBS building. This was last year.

She was introduced and she said "we are just learning about how to treat neuropathy and I'm here to answer all your questions and to listen to you".

I then raised my hand and I politely said: "If I tell you that taking large doses of Methylcobalimin has successfully treated the burning in my feet due to diabetic neuropathy, are you going to pooh pooh me and say "Ah, I don't believe that one bit". ?????

And she replied very nicely. "Absolutely not, I would never be so arrogant as to not listen to you, and learn something new, THAT'S WHY I'M HERE TONIGHT.

So I explained to her what I had learned from this board, I explained that I had started with the 1000 and within 2 weeks knew I would be taking the 5000 and the results, in my book, (and only affecting me at this point), were nothing short of a miracle.

Now I still have some burning, but something triggers it, whether it's the crazy weather, or my son calls us up. That does it for me.

But usually (and this is how I judge me having a GOOD PN DAY)....when I don't notice my feet doing their thing, and I'm cleaning my house, going shopping, or just watching tv, and I don't even think about my feet, that means they are not burning.

I don't get the pins and needles or buzzing. That was in the beginning and that was ONLY WHEN THE PODIATRIST USED THAT VIBRATING THING ON MY FEET.

I never had one single symptom up until that office visit and then BOOM!!! it all started.

I once asked him about that and he said

No, it wasn't me, you have neuropathy, and it's good that you have pain, pain is good"


AHA!!!! really??? pain is good?? Try telling that remark to the hundreds of people who are going out of their mind with PN pain on a daily basis.

I will never understand why that particular doctor (who shall remain nameless) said: "UGH, B-12, I WOULD NEVER, blah blah.

I wonder why??

And he was adamant. I couldn't change this guy's mind for all the tea in China.

I wouldn't even try.

Hello Melody,

There is nothing at all unusual to have a B12 level of 2000 ng/L while on treatment. The reported level does not represent your actual body stores because you have recently been on treatment. I have explained this in a quote at the end of this message. Stopping treatment for five days is not sufficient to ensure that your serum B12 is in equilibrium with body stores. Results of my current research show that, in my case that might not be typical, even stopping oral B12 for four weeks was not sufficient, after taking very small doses.

Do you have diabetic neuropathy that is somehow being improved by massive doses of B12? Or, do you actually have vitamin B12 deficiency?

Unfortunately, because you have been on treatment, you cannot now use methylmalonic acid or homocysteine for diagnosis of B12 deficiency. Please see the quote at the end of this message for an explanation. You can, however, still use methylmalonic acid and homocysteine to test for effectiveness of treatment.

The doctor who said this to you:

has no idea about vitamin B12 deficiency, but is typical of most of those I have seen.

I have suffered significant, and probably irreversible, neurological damage as a result of undiagnosed vitamin B12 deficiency, but have never had any haematological evidence of it. You are welcome to read more about doctor's reactions, on the Doctors-Apathy page of my web site (URL at end of this message).

According to experts, about 30% of patients with B12 deficiency have no haematological signs. For example, Lindenbaum et al found:

and concluded:

Here is a link to the abstract of the article, my reference BA12:

Neuropsychiatric disorders caused by cobalamin deficiency in the absence of anemia or macrocytosis, J Lindenbaum, NEJM Volume 318:1720-1728

You can find links to many articles about B12 deficiency, on the References page of my web site.

I have previously explained, in some detail, how to use methylmalonic acid and homocysteine to test for effectiveness of treatment, on the following thread:

http://neurotalk.psychcentral.com/thread41358.html

I have copied an edited version of my post on that thread, to the end of this message. I suggest that you read the original thread to see the context of my message.

You are welcome to ask me any questions here on your thread. If you prefer, you may contact me for a private discussion by sending an Email from the Contact page of my web site.

Paul
**********************************
*********************************************

For the benefit of anyone else reading this, please note that you cannot use either MMA or tHcy for diagnosis of B12 deficiency after receiving any form of B12 treatment, because it is then not possible to obtain a valid “before” result. My suggestion on this thread is specifically for testing effectiveness of treatment only. The following explanation is copied from the General Advice page on my web site:

If anyone wishes to discuss my advice about testing first, then I suggest starting a new thread, perhaps called "why test first?", rather than using this one.

I suggested to MELODY that she could reduce her doses now, is that
she has posted many times that she has financial contraints in her home.

By saving some $$ she might then be able to try benfotiamine (this is showing good results in diabetics). I was going to suggest that soon for her.

The Jarrow 1mg works out to about 9 cents a day.
The 5mg is more expensive.

I think it is barbaric that doctors think you must have anemia for an
intervention!

To Paul:

Thanks for your most informative post on B-12.

I'm not asking for any more tests on my B-12 levels because I really don't think my insurance would authorize any special B-12 tests (especially to the Mayo).

Since we know that I have diabetic neuropathy, and since we know that one week after I began the Methyl B-12, the burning stopped!!!!. Well, to me, it's a no brainer that the B-12 helped my nerves.

So I'm doing what Mrs. D suggested (I was going to do this anyway).

Today I didn't take a pill.

Tomorrow I will.

But one thing puzzles me. About a month ago, I had gotten a cheaper version of the B-12 pill and took 3000 (with C and other stuff in it).

It really didn't do a thing for my burning (now I hope this is not ALL IN MY HEAD HERE).

But when that bottle ran out and I went immediately back to the Jarrow 5000, well my feet were fine.

So is it because I took the 3000 pill or was it because it was not Jarrow's??

I'm due for a new bottle soon.

I'm going to get the 3000 of the JARROW and we'll see what happens.

I may be one of the rare people who need to take 5000 every day to keep my feet from burning. Who the heck knows.

It's all trial and error from here on.

The Methyl B-12 did absolutely nothing for Alan, but then again, he has CIDP and not diabetic neuropathy.

I really can't thank you guys enough for the information you provide on these boards.

Many people might not apply what they read but I most certainly do.

AND MY SUGAR WAS 112 this morning.

I just didn't eat the Quinoa. I went back to not eating after 7 p.m. Not that I actually ate anything. Last week I had some fruit at 8 p.m with Alan while we watched American Idol.

His nurse told me "you are diabetic, you have to eat every night". Now saying this to a formerly obese person who used to munch all night long, is like telling an alcoholic "you have to have a glass of scotch at 8 p.m.".

The nurse said "diabetics usually dip at 4 a.m." I said "I don't dip" and she said "everybody dips".

So I began to have a small orange at 8 p.m. or some piece of cantelope.

Did I need to do this? No!! I got used to not eating after dinner and have been doing this for 2 years. It's nothing to me. Don't miss it. I reconditioned my brain not to put anything in my mouth after 7 p.m.

So as a result of doing the orange or fruit thing, (and adding Quinoa) as a side dish, well my morning sugar was 145, 157, etc.

Didn't like this. At my last visit to Cornell, I told them what Alan's nurse had said and they said "why are you listening to anyone else, you know your body, you were doing just fine, don't eat after dinner, in your case, you don't have the dips".

So (and I allowed myself some raspberries at 7 p.m.) last night. But no Quinoa. And I had fish for lunch and small piece of fish for dinner with some mushrooms and a salad. Nothing after 7 .m.

Felt fine. woke up and it was 112.

So to me, that means, I can't eat the Quinoa (which I really liked but what the heck),

So I'm learning what foods to incorporate during the day.

I could lose another 30 lbs (pound wise, not looks wise), and if I do, well I do.

But when a person used to weigh 300 lbs for most of their life, well this is a bonus.

Anything I can do to slow down the progression of this neuropathy, well I'll do it. And if it takes less food, well, it will take less food.

And my glorius Methyl B-12. lol

Thanks much.

you are very disciplined with your eating habits, which is very good for you of course, keep up the good work. If you dont feel well because your blood sugar dips then you will have to change in the meantime in this instance listen to your body, which you are doing already. If you feel well and someone suggests a change food wise, you should run it by cornell first since you are in their program. I dont include some of the basic supplements in moderate doses in this because well we know how most of medicine responds to that.

would correspond to your basal insulin dose.

I think a better choice of snack would be a carb that is slowly metabolized.
High fiber fruit is good, but may not last as long as you need.

Other choices are cheese, some cottage cheese, or the new Glucerna
drinks or bars. These have corn starch in them, to allow slow carbs into your blood. They are very popular here even with the doctors themselves who are diabetic! Do you inject at night? or in the morning?

When you dip your liver then puts out sugar to cover the dip, and that may be more than you need really, so you read high in the morning. Night sweats may be a warning sign of dipping. But with those mattress toppers, you can get warm anyway!

I have heard some pretty scary stories about hypoglycemia in the night from patients.

Mel, you may like to read this url about how diabetes depletes B1, B6, B12 &
magnesium, zinc and chromium, i wonder how many doc's check if their diabetic patients are low in these important vitamins and minerals.

http://www.enterhisrest.org/articles/diabetes_help.pdf

Brian

Hi Brian and everybody.

I've never had a low dip during the night in all my life as a diabetic. I inject myself every morning about 8 a.m. with 22 units of Lantus.

I don't snack in between meals, either.

I just go to Dunkin with Alan, have my whole grain bagel and light cream cheese (or reg cream cheese, because they just put a shmear of it on). and my cup of coffee.

Then at 1 p.m. I have my salad with grilled chicken or I'll have some soup and a small piece of fish,instead of the salad. I'm not a big eater any more. The salad is very filling.

Sometimes I'll have some berries at 3 p.m but usually I forget so I don't eat anything.

At 5 or 6 we eat dinner. Alan eats healthy but eats more than I do.

I have my salad, fish with a side order of stir-fried veggies. Then I'll have my second cup of coffee of the day.

That's it. Nothing but water or a cup of sugar free hot cocoa at 10 p.m.

I don't even think about eating at night anymore. I guess I retrained my brain.

But TODAY was really about self-discipline let me tell you. We had friends come in from out of town and we took them to our favorite Japanese Restaurant. We like to go there on special occasions because lunch costs $5.50 and where on earth can you get Teriyaki chicken or fish on a bed of veggies and sprouts for $5.50, (along with rice if you want it).

I mean, it's cooked fresh, it's cheap and it has ambience.

Well, we all sat down and everybody ordered wine. We don't drink so we had water. Then they ordered appetizers. We don't eat appetizers. I mean, we probably could but we don't and that's that!!!

So out comes the shrimp tempura, the fried rice, the white rice, the hibachi steak, the lo-mein noodles, the this, the that, along with california rolls (which I adore and they don't raise my sugar).

I ordered my teriyaki Chicken on bean sprouts with a bit of brown rice.

I took my time. I don't eat fast. Alan had the same.

Everybody is asking us "why don't you eat like we do??" We simply said "we are used to eating this way, it's no big thing". We don't want to bring all attention to ourselves but we are not about to chug a lug wine, and start eating tempura especially when we used to weigh 300 lbs or so.

So then we went for a walk and we took them home and out came my home-made muffins. And jello with splenda, and 100 calorie cookie packs. They laughed and took out their italian pastry. We had a good time.

Old friends are so precious, it really doesn't matter who eats or who doesn't eat or what they DO eat!!! It's hoping that you are having a pain free day so you can take them out for a walk and enjoy their company.

Alan had a ball today. I was so happy to see him walking around (shoe boot and all), showing them the stores in my neighborhood.

His shoes should be ready in a week or two. Can't wait!!!!