[MelodyL]

Originally Posted by mrsD

She should get tested to see what is going on. B12 is absorbed before the colon. She might be getting more than you think. However, potassium and magnesium may lost more thru diarrhea. Crohn's is more damaging for malabsorption.

It is hard to say, she should be getting counseling from a dietician at the doctor's.

mrsD

I hear you Mrs. D, but that's NOT GOING TO HAPPEN IN THIS LIFETIME.
Some people never listen and never learn (until they wind up in the hospital). So far, she's been very lucky. She hasn't been to a doctor in YEARS. Her whole family has a history of colon cancer and everyone else gets regular colonoscopies, etc. Not her. And she doesn't eat anything that contains B-12. She'll just eat any kind of fast food and then she'll go to the bathroom.

Thanks much for your information.

Melody

[Mo02]

Hello,
I found this site yesterday. The information on this thread is amazing!!!
I will try and make my story as short as possible, even though I could go on forever!. I became ill in November of 2009. I was diagnosed with B12 deficiency in December of 2009. At that time my level was 86. I was immediately started with one 1000 mcg Cyanocobalamin injection a day for 5 days, followed by weekly shots until May. Since May I have been getting injections every 3 weeks. Life has been a rollercoaster, to say the least.
Last week I saw another doctor. A neurosurgeon. He diagnosed me as having (I hope I get it right) Subacute Spinal cord degeneration. In the past 11 plus months I have been seen by 9 neurologists, including the ones that I had seen during an 11 day hospital stay in August, have had countless tests done and now finally a diagnosis!
My B12 goes up and down with the highest being 600 on August 27th (after 5 consecutive days of shots). As of October 12th it was sitting at 284. I am due for another check the end of November. I have this feeling it will be below 284.
Questions I have........ should I be taking Methylcobalamin orally each day along with getting injections every 3 weeks?
The results of the MMA and Homocysteine tests would not be accurate if they were done after a run of daily shots for 5 days?
Why does my level not stay up?
My antiparietal cell antibody test came back positive ....... is that a positive for Pernicious Anemia? Some tell me no, some tell me yes.
I am forgetting alot of questions but will leave it at that for now.
I will continue reading more of this thread

[MelodyL]

Hi, I'm sure one of our knowledgable B-12 experts will hop on board and give you lots of good info.

I can only tell you what I take. I take 5000 sublingually every day. My last level was 2000 and I gather it's much higher now. With absolutely no ill effects. My husband's level is over 3000. He has neuropathy. The Methyl B-12 helped MY neuropathy because I'm diabetic. It didn't do a thing for my husband, unfortunately.

I do not take cyano.I take straight Methyl B-12.

On an empty stomach. First thing when I wake up in the a.m.

Listen to the others who come here and then you can decide for yourself.

Melody

[Mo02]

Thank you Melody!!
I look forward to as much info as I can get

[mrsD]

Yes, I think you should aggressively take the oral. 5mg a day of the methyl on an empty stomach. Obviously the injections are not doing well for you.

In answer to your question about fluctuating levels I think 3 things.

1) Because the injection only lasts in the body for a very short time, getting them every 3 weeks before you are stable is not enough.
This link illustrates the rapid clearance of B12 in an experimental situation.
http://www.ncbi.nlm.nih.gov/pubmed/15730428


2) B12 is stored in the liver. So when you get that infrequent shot, the liver is sucking some of the brief blood levels.

3) There is an active transport system into the cerebrospinal fluid. I works better when the blood levels are HIGH, thereby a gradient of sorts helps get the B12 into the spinal cord and brain. When there is a low amount in the blood, the spinal cord has less to get it needs from. If you take a high dose DAILY, then you will get better serum levels, so your nervous system can heal better. About 10% of the oral dose is absorbed passively in the intestine and daily use will cover the short half life and provide a steady amount of B12 daily, instead of peaks and valleys.

Since B12 is non toxic taking the oral in high doses is not harmful. Just make sure it is on an empty stomach because food interferes with absorption, and you want as much as possible to be absorbed without intrinsic factor. The oral form is not expensive either. Luckily both factors work in your favor.

Once you have damage to the myelin in the spinal cord and brain, it will take a longer time to fix if that is even possible.
Using methylfolate and B6 would be helpful for remyelination, because they work in concert for repair.

Welcome to NeuroTalk.

[Mo02]

Thank you MrsD for your response. Your are a wealth of knowledge which is so refreshing!
I have not read the link but have it bookmarked so will do so once I finish with this post.

I found sublingual MethylB12 in 1000mcg. I think I will check out a healthfood store that is close by to see if 5 mg is available. With sublingual tabs do they have to be taken under the tongue or can they just be swallowed for absorbtion?

You mentioned Methylfolate ....... I take 1 mg Folic Acid daily (because of low folate at the time of B12 def diagnosis). Is there is a difference between the two?
I also take 300 mg Ferrous Gluconate x3 daily because of low Ferritin, again found at the time of the B12 def diagnosis.
Just as a side note, I also take Synthroid daily for Hypothyroid.

Off I go to read the link

[mrsD]

Most stores would not have the 5mg methyl version. It is easily available here www.iherb.com . Several affordable suppliers.
Puritan's Pride even has it now!

There is a genetic error that about 10% of people (and some believe may be higher incidence) that prevents people from activating both folic acid and B12. I have details of that earlier in this thread. (regular folic acid is not active in body).
It is called a MTHFR polymorphism. When people come here with vague neurological problems one has to wonder if they are part of that genetic failure.

Methylfolate is a suggestion, because regular folic acid fails in this genetic failure group. It is available OTC from Solgar at 800mcg and you can get it also at iherb. So if you tested low in folate, you might as well get the methylfolate too. It tends to be more expensive than the 5mg B12.