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Old 03-06-2009, 09:56 PM #1
pearl girl pearl girl is offline
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Confused cyan vs methyl B12

Help. I already posted a msg and now can't find it. slow learner due to b12 level of 68. Been 3 weeks since diagnosis. Improvement on cyan 1000cmg for two weeks. Switched to methyl 1000-2000 daily and after 10 days symptoms which had improved are returning. I feel much worse. Is it possible that the b12 type switch has caused this or is it typical three steps forward two steps back type of thing. I actually had my typing ability back for a week and now I'm like a slug again. Any input would be very much appreciated. Plan on switching back to cyanocobalamin tomorrow because I just don't know what else to do. anyone ever hear of something crazy like this? Distressed and discouraged, Nancy

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Old 03-06-2009, 11:05 PM #2
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Help. I already posted a msg and now can't find it.
Click onto this link and see if it's the one you're looking for. http://neurotalk.psychcentral.com/sh...251#post476251

If you click on your own name at the left of the screen you can actually review the posts that you made by clicking find more posts......
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Old 03-07-2009, 12:23 AM #3
Lanee Lanee is offline
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Originally Posted by pearl girl View Post
Help. I already posted a msg and now can't find it. slow learner due to b12 level of 68. Been 3 weeks since diagnosis. Improvement on cyan 1000cmg for two weeks. Switched to methyl 1000-2000 daily and after 10 days symptoms which had improved are returning. I feel much worse. Is it possible that the b12 type switch has caused this or is it typical three steps forward two steps back type of thing. I actually had my typing ability back for a week and now I'm like a slug again. Any input would be very much appreciated. Plan on switching back to cyanocobalamin tomorrow because I just don't know what else to do. anyone ever hear of something crazy like this? Distressed and discouraged, Nancy FS
NANCY, Perhaps my experience will help. Have you changed your diet too? Are you taking something else? Are you stressed worse than before? It took much longer than 10 days for me to have substained improvement. The following is a summary of my experience. I'm new and haven't read any of your messages but this one. Please feel free to share your circumstances if you want to.

The following is my info that might help. If you have questions, let me know and I will try to share.

************************************************** ********
My response to Paul who had cyst reactions he though was due to Methycobalamin B12:


MY SUCCESS:
After taking 1000 mg a day of cynacobalamin (sublingual Superior Source) for three months, my B12 increased markedly. After over three years, I personally have had no rashes or skin problem. (Note: I’m also allergic to penicillin.) Could any of the other medications you were taking be the cause of the cyst reaction?) See history and details below:

I’m a sufferer of B12 deficiency. I originally took injections and had a severe rash reaction on my face, arms and legs. They were not cyst.

I was told it was probably the liver extract that was added to the injection. I didn’t have the reaction when the liver extract was omitted. Recently I’ve read that the serum used to deliver B12 causes rash reactions.

At one point In my life, my anemia was constantly below the transfusion point with no know explanation as to why. When it reached an alarming low below the transfusion point, I was hospitalized immediately. A bone marrow aspiration revealed megaloblast. I was given injections of iron weekly (max dose), 12 folic acid pills a day (max dose available), prescription multivitamins, and B12 injections weekly. Finally, after 63 iron and 63 B12 shots, my hemoglobin raised to at or just below the transfusion of both the commonly used blood test.

I borrowered a nurse friend’s nutrition book. I researched sources of B12 and iron. It appears that while plants have a form of B12 in them, we can’t absorb them. The maximum natural B12 source is animal meats with red meats being the best and the internal organs (liver) the highest source. I didn’t like liver, finally learning to like chicken livers first and now beef and pork livers. My doctor said that cynacobalamin is the absorbable source of B12 that we get from food. And, for ten years I ate mega overdoes of these foods, including the vitamin supplements. I purchased hind quarters of beef and ate it with fruits (dried and fresh), nuts, and veggies. I was determined to beat this. After almost ten years on this diet the anemia gave way to a maintained very low normal reading.

What I didn’t know and I understand was not common knowledge at the time, was that having the anemia in the “normal” range, which large doses of folate can do, does not mean the megaloblastic condition is gone. One of the diagnostic testing tools used to test anemia may appear normal, as mine was low normal; but the insidious megaloblastic anemia, a form of pernicious anemia, is still present.

I continued to have all types of symptoms – that I understand now are symptoms for problems that include B12 deficiency. The amount of red meat, including chicken and beef livers made my low readings questionable. I progressively got worse until my neurologist notice my history of anemia and questioned me about it. The bone marrow aspiration revealing megaloblast resulted in him placing me on B12 therapy again – for the rest of my life he said. We first tired the B12, B6, Folate combination in the sublingual form by Superior Source, checking my B12 levels three months later.

During this three months time I researched everything credible I could find to determine the side affects of B12. I’m very cautious about taking any kind of medication; so the idea of taking anything for the rest of my life demanded I knew what the possible side effects could be. The only thing I found was reactions to the serum that is used in injections to deliver the B12. Since my appointment with my internist was before the neurologist, I asked him what the side effects of cynacobalamine are – sharing that I only found reactions to the serum used to deliver the B12. He said, Do you know why you couldn’t find it? I said, “No.” He said it was because there are no known side effects of B12. He said research had been done utilizing extremely high doses with no known side effects.

After my mother’s death we (six siblings) had an autopsy on her brain done. The pathologist said the brain did not reveal the usual Alzheimer pathology. He said there were tiny spots of dead cells throughout her brain. When I queried my neurologist as to what could have caused mother’s condition (previously diagnosed as Alzheimer), he said B12 deficiency, tiny strokes, or a vascular condition.

If you were taking other medications, they or a combination thereof, may also be the cause of the cyst. But, there is the possibility that the serum in the methycobalamin may be the problem. Have you tried sublinqual B12 – cynacobalamin and/or methylcobalamin?

I CURRENTLY TAKE 1000 mgs of both cynacobalamin and methycobalamin, sublingual, Superior Source, with no side affects. It is my understanding that the natural way (food, red meat etc) we receive B12 is cynacobalamin. The liver then converts a small portion into methycobalamin, that is believed to be utilized to maintain and restore neurological functions. Therefore, in an abundance of caution, having found no know side affect to B12 in and of itself, I take both.
PLEASE, if you haven’t already, CHECK OUT THE SERUM. If you have found research that disputes my findings, please share.
LANEE

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Old 03-07-2009, 01:28 AM #4
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It might be better to up your dose to 5mg a day.

When you are so low, there will be places competing for the B12 so you should give it a higher dose for a while --say 3 months daily.

Also take it on an empty stomach. Presence of food may impair absorption, or give erratic results.

Methyl should work faster. It is the activated form the tissues use. The cyano has to be converted in order to work at all.

There are 5mg tablets so you don't have to take 5 of the 1000mcg. At least that is true for the methyl.

It is not a huge deal about the cyano...since you already used it well. Some people react to the cyanide portion, and some don't convert well, that is why methyl is suggested today.
But I do think you would find better results by using MORE.
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Old 03-07-2009, 06:55 AM #5
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Also remember, healing nerves hurt as much, or more than dying nerves.
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We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!
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