[svguy]

OK thanks for the magnesium link - lots to review there. I’ll read through and pick a different form. I certainly want to be using something that could help in nerve repair.

My serum B12 test was taken early in my supplementation, before I began the full regimen shown above. I suspect I’d measure much higher today. I wish I’d been tested before beginning any b12 therapy to better assess if a deficiency is truly at the root of my problems. In October, after the onset my burning feet, my overall mood dropped and brain fog set in. I had great difficulty concentrating and spent a lot of time curled up on the sofa in a daze. Sleep was my only refuge. The weekend I stopped the Prilosec, that malaise reversed, and my burning pain lifted. That was the time I became very suspicious of B12.

Since then, I’ve been following the B12 deficiency thread at Wrong Diagnosis dotcom. The thread was launched by Sally Pacholok, who authored “Could it be B12, an Epidemic of Misdiagnosis.” There is a primary, ongoing thread for discussion, as well as a basics thread (like a Sticky). The basics page includes several posts as overview and introduction and covers the sublingual approach and the potassium issue as well. I’ll pm you the links.

I am dismayed at my long term use of the PPI medication, which was deemed safe by my primary as well as the prescribing ENT. I feel certain that it contributed to my current condition. B12 has been my main concern, but as you now suggest I can see where other problems might arise. In November I had an EGD and was tested negative for helicobacter. BTW, once I dropped Prilosec the heartburn began kicking in. However, since completing that detox/cleanse (and adding probiotics), I’ve had zero problems with heartburn.

I am very concerned about the high CRP and night sweats – that just isn’t normal – and so I appreciate your inputs on this. I tend to believe the inflammation and neuropathy go hand-in-hand.

An active viral situation would be another concern. I have no known history of herpes infection or shingles, but did contract chicken pox as a child. I’ll certainly explore it (hope I can get my doc to buy in on the testing).

[mrsD]

I am aware of that thread at Wrong Diagnosis...

The main poster on it came from here...our other incarnation board. Basically he took Rose's information, and expanded on it greatly.

You don't have PMs activated...I couldn't send you one.

But this is Rose's website, which I refer to in the B12 thread:

http://sites.google.com/site/roseannster/home

Please activate your Private messages in your options field, so I can discuss this with you.

[svguy]

Sorry, mrsD. I can't seem to figure out private messaging in order to forward you the links. All the pm "hooks" described in the FAQ are not showing up on my screen. Maybe that functionality is restricted because I'm a newbie.

[Jolina]

question for anyone.. My b12 level was 249 they told me to take 1000 vit a day. I see that that is way to low of a dose.. I have also been taking it with food. so my question is. I have a friend that has a powder from Kirkmans that is the methylcobalamin that her kids take it is 5000 does.. has anyone heard of this and will this work?? or should I see if Kirkman's has a pill form.

[mrsD]

Welcome to NeuroTalk.

Originally Posted by Jolina

question for anyone.. My b12 level was 249 they told me to take 1000 vit a day. I see that that is way to low of a dose.. I have also been taking it with food. so my question is. I have a friend that has a powder from Kirkmans that is the methylcobalamin that her kids take it is 5000 does.. has anyone heard of this and will this work?? or should I see if Kirkman's has a pill form.

There are 5mg doses at iherb.com from several manufacturers.
Also Puritan's Pride started carrying methylB12 oral too, which I took as a trial to see if it works, and it does splendidly. You can save alot of money with their sales. Soon the buy one get 2 free will be offered. Usually in early summer.

When taking methylcobalamin orally you MUST take it on an empty stomach. If you are low like this, that implies a failure of intrinsic factor. So you cannot rely on intrinsic factor to aid in absorption. The B12 then is passively absorbed in the small intestine...and presence of food acts as a sponge and reduces that. 5mg orally daily on an empty stomach should get you above 1000 in 3 months. I'd stay on it for at least 6 mos to a year since you have symptoms. Eventually you may be able to come down to 1000mcg (1mg) to hold at a good level. During the first year you will be building storage in the liver and also sending the B12 into the spinal fluid and brain. This is dependent on good serum concentrations, so you need to keep high for a while to accomplish that.

If you have some malabsorption issue in general, from inflammation like Crohn's disease or gluten sensitivity you probably will be low in other things. That is why diagnosis is important to show you what else you need to boost.

[MelodyL]

Originally Posted by mrsD

Welcome to NeuroTalk.



There are 5mg doses at iherb.com from several manufacturers.
Also Puritan's Pride started carrying methylB12 oral too, which I took as a trial to see if it works, and it does splendidly. You can save alot of money with their sales. Soon the buy one get 2 free will be offered. Usually in early summer.

When taking methylcobalamin orally you MUST take it on an empty stomach. If you are low like this, that implies a failure of intrinsic factor. So you cannot rely on intrinsic factor to aid in absorption. The B12 then is passively absorbed in the small intestine...and presence of food acts as a sponge and reduces that. 5mg orally daily on an empty stomach should get you above 1000 in 3 months. I'd stay on it for at least 6 mos to a year since you have symptoms. Eventually you may be able to come down to 1000mcg (1mg) to hold at a good level. During the first year you will be building storage in the liver and also sending the B12 into the spinal fluid and brain. This is dependent on good serum concentrations, so you need to keep high for a while to accomplish that.

If you have some malabsorption issue in general, from inflammation like Crohn's disease or gluten sensitivity you probably will be low in other things. That is why diagnosis is important to show you what else you need to boost.

Mrs. D.

I have a question about intrinsic factor. My friend (7 days ago), had a vertical gastrectomy (vertical sleeve weight loss surgery). They took out 85% of her stomach. Kind of radical I know but she was determined and as of last night (after 7 days) she has lost 26 pounds.

She is on protein shakes and jello all kinds of liquids. No solid food yet.

I know she's on supplements and such, but with the loss of 85 % of her stomach does this have an effect on intrinsic factor? She does not take any Methyl B-12.

Shouldn't she be doing what I do and take 5000 every morning on an empty stomach?

Thanks much

[mrsD]

Yes, she is no longer going to be making enough intrinsic factor, or eating foods high in B12 it looks like. She will also not have enough acid in her stomach to help with absorption of B12, folate, calcium, iron, zinc, and magnesium (and who knows what else).

Most bariatric patients suffer from lost Omega-3 fats, and many nutrients. It is a drastic way to lose weight, and over time has terrible trade offs.

[MelodyL]

Originally Posted by mrsD

Yes, she is no longer going to be making enough intrinsic factor, or eating foods high in B12 it looks like. She will also not have enough acid in her stomach to help with absorption of B12, folate, calcium, iron, zinc, and magnesium (and who knows what else).

Most bariatric patients suffer from lost Omega-3 fats, and many nutrients. It is a drastic way to lose weight, and over time has terrible trade offs.

I agree but it was her decision and it's not reversible. They were not able to do lap band on her so she feels she had to go this route.

I can't bring this up to her (about the Methyl B-12). I know what I can't say and what I can say. If she brings it up to me, then it will because she asked me the question and I can then respond with: "Oh, I've read this on my one of my message boards about when one has bariatric surgery like the sleeve, one loses intrinsic factor, etc. etc.

This is the only way I can tell her about stuff like this.

And thanks very much.

Oh, by the way, this a.m. my sugar was 82. Still doing the fenugreek tea before bed time. Thank god I found this out.

lol

[Jolina]

what do people think of going to see a naturpath dr and a neurologist. do you think seeing both would work. My issues started 4 weeks ago with tinglling and all over body sensetivity. then one night the icy hot feeling on my feet and hands started. that is when I saw the dr and they just said take b12. and wait a few months. I however call the neurologist and was in two days later to talk with her. she wanted to wait a few weeks and I go into do a emg and a ncs next friday. not sure after that what she will do. I started taking 200 gabapentin three times a day last sat. Yesterday was a bad day. burning all day and then woke up at 3am with burning. I have three small kids ad am already going down hill mentally. I just dont know what to do. this all came on so fast and I am lost.

[mrsD]

I'd do the B12 correctly and wait 3 months to see what happens.

Do the tests the Neuro ordered and see what shows up.

If you do too many things at once you won't know which is working or not. You can watch your diet in the meantime and avoid sugar. That makes burning much worse for some people.

You can do a trial of gluten free and see if that works. Naturopaths often try to sell you lots of supplements to start, and you'd want to see how the B12 works alone, in the beginning.
You can always go later IMO.

You can have your doctor test your Vit D level too and correct that if it is low. Low D can cause problems.