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Quote:

Originally Posted by Marlene (Post 1030112)

This issue came up on another forum for blood disorders. A doc told a patient that since they are getting packed red cell transfusions, they are also getting B12 and there's no need to supplement. No one really believed that this could correct a B12 insufficiency. I'm not sure if the body recycles B12 as efficiently as it does iron once the red cell dies.

Thanks again MrsD.

Hope you made it through yesterdays storms ok.

Yes we did thank you... a bad wind thing whipped up around 10:30 pm and did alot of damage. All around us are without power, but we escaped this time. Many transformers blew up, we could see and hear them.

Seems to me if a person is getting transfused, it is because they need it. So any B12 lost with the lost blood, would be restored with the transfused blood. But to correct anything? Probably not enough to raise someone who is already low.
B12 is removed from the body via the bile, and thru the kidneys.
Excess is stored in the liver. (up to 5 yrs worth).

Quote:

Originally Posted by mrsD (Post 500230)

Cyanocobalamin is the commercial synthetic form of B12 that was patented more than 40 yrs ago. For many years it was the only one. The body cannot utilize this form of B12 and has to
remove the Cyano portion (cyanide) and methylate it in order for the tissues to use it properly.

For many people cyano versions are adequate. It is the only version most doctors know about. It is in all their reference books, still.

But there are some people who:
1) do not have the genetic capability to methylate folic acid and B12 properly. These people will not improve with cyano version.

2) some people do not have the genetic ability to handle CYANIDE in any form. These patients may react to cyanocobalamin with worsening of symptoms (toxicity).

Luckily we have a very inexpensive oral version of methylcobalamin available without an RX (OTC) which can easily be used. But many doctors don't know it even exists.

1mg orally daily can cost patients about 9 cents a day.
Since it is easy to obtain and so inexpensive why take anything else? Many local stores do not have this yet, but it is very common online. Jarrow, Source Naturals and other reputable makers all have a version. Check out vitacost.com or iherb.com for examples.

There are alternate injectables too. When the cyano information started to become public, another form called hydroxycobalamin was marketed. Some doctors may use this, but it is more expensive. Methylcobalamin injections are available custom ordered at compounding pharmacies. This makes them the most expensive. This methyl version is being used in the Autism community.

Injections are invasive and more expensive, and really do not offer much incentive to ambulatory patients. They are still used for bedridden, or unconscious patients. But their days in the doctor's office are no longer necessary.

For people who really want to spend money on genetic testing, there are tests now that will tell if you are failing to methylate vitamins properly. These tests may not be covered by insurance (most likely not) and cost over $400. They are newly appearing in OTC outlets for less...more like $125. But since the methyl versions of the B12 and folate are available, it is not really absolutely necessary to test DNA at this time.

My observation after years on the net is that if people are having neurological symptoms severe enough and for long enough to appear here, they have some significant problems with their metabolic ability to handle some nutrients. Since these nutrients are now available in the activated forms for very little money, why use something that may not work? If methylcobalamin cost the same as RX cyano or more, I could see trying the cyano first. But the reverse is actually more true, so why bother with cyano at all?

There is another form of activated B12 called coenzymated.
It has another name dibencozide. This one is commonly available from Country Life. Its generic name is adenosylcobalamin and it is active also. But it tends to be more expensive. Some people like it better, and body builders tend to favor it for muscle building etc.
There is also an oral form of hydroxycobalamin. This has been suggested to be used to detoxify cyanide which can occur during acute smoke inhalation. This form is not as easy to find to purchase, is a bit more expensive, but is out there.

The actual chemistry of B12 and folic acid... and the entire methylation chemistry that they are involved with is really complex. I don't think going into it here is necessary for most people.

I can't find a Kegg module for B12... but here is the one for
methylation of folate:
http://www.genome.jp/kegg/pathway/map/map00670.html
Each box is one enzyme that can be affected by a genetic error/failure. The black arrows all come to folic acid to provide a carbon atom for it. Sort of like "all roads lead to Rome".
The methylation of B12 is complex too.
http://books.google.com/books?id=lZw...um=7#PPA122,M1
page 122 of this link gives some details for those who like this stuff ;)

You have great information. B12 deficiency usually goes along with folic acid deficiency. My doctor ordered the blood test and it was covered by insurance. I had other blood test at the same time. I have two defective genes that does not absorb B12 or folic acid. I am taking B12 shots twice a week and L-5- MTHF every day. I can't absorb or assimilate regular B12 or folic acid. I need it in these certain forms. Many doctors are unaware of the need or forms.

Hello Mrs.D. I am having trouble finding the link to the original posts about the 3 stage protocol of nutrition, vitamin supplementation and exercise. I printed it out and have been following it though for a week now. I am very curious to know if anyone else reported having trouble sleeping after starting the supplementation program?

Thanks...

Ribose, R-lipoic acid, B12 may energize some people.

Some people get energized by B-complex. (I can't handle high dose folic acid).

MethylB12 however, is a cofactor in making melatonin our sleep hormone so with time people do sleep better with methylB12.
And Ribose helps me sleep. So people do respond differently.

I don't recall seeing any effects printed about Vit D, either way.

Take your B12 and B-complex first thing in the morning, just in case you are one of the energized ones.

Magnesium typically relaxes people and is best taken at night.

People do vary, and that would make any blanket statement, difficult.

I was taking Jarrow 5000mcg Methyl B12 daily, and after about maybe a month of doing so developed shortness of breath (that was occasionally severe) and tachycardia.

I'd like to continue taking B12, though, and I've been told I should try Hydroxocobalamin or Adenosylcobalamin. Would anyone here recommend one form over the other?

I've been suffering from pectoralis/shoulder pain for 1.5 years now that the doctors couldn't seem to diagnose, and I discovered by accident that megadosing on the Jarrow B12 took my pain away COMPLETELY. It's very confusing - I don't know if that means the pain is being CAUSED by a B12 deficiency or what's going on. But because it made me feel basically 100% better, I'm desperate to continue with it! Alas, I have to breathe, and Jarrow's B12 made me feel like I was honestly suffocating at times.

When was the last time you had a chest Xray?

There could be something going on there. Another member here had SOB and they finally found an infection by an uncommon bacteria in her lungs.

Difficultly breathing can be also a sign of myasthenia gravis.
So getting a doctor's evaluation is important.

Some people have too many red blood cells...polycythemia vera.
B12 in high doses is not recommended for them...but this is rare.

So there are things you should check out with a doctor if you have SOB.

B12 will fix things that need repair due to nerve damage, etc.
But it cannot fix everything.

Quote:

Originally Posted by CrimeofPassion (Post 1052674)

Quote:

Originally Posted by mrsD (Post 1052696)

I had a chest x-ray back in late 2013 when I saw a doctor for my SOB. She diagnosed me with anxiety after about 5 minutes and gave me Zoloft. It took me a few months to realize that it was the B12.

Quote:

Originally Posted by CrimeofPassion (Post 1052674)

CrimeofPassion...I was b12 deficient, discovered about 20 10 years too late, unfortunatlely, and started the subligual liquid Pure Encapsulations 2 yrs ago. I also have Psoriatic arthritis. My neck had been in unrelenting level 10 pain for 4 yrs. With the first 2500mcg of methly-b, my neck pain went to a level 4. The next day it was gone. In that month of higher doses of b12, I accomplished a year's worth of worth. I had barely been able to move for quite sometime.

Along with the unexspected pain relief and ability to move better, I also immediately began coughing. In that month I also experienced extremely unusual side effects to the methyl-b. I saw specialists for each and was told this was thier assumption. My doseage was cut in half, then half, again. I was tested for a year to try to discover the cause other than the b12. I had to reduce my doseage to 250mcg per day, barely enough to keep me thinking straight. When I take more I experience the breathing problems, skipped heart beats and irrational rage. I try to keep as close to a small dose.

So, you're not the only one experiencing adverse side effects, but you're one of very few, I'd suspect. Welcome to the herd, zebra friend.
deb...

Quote:

Originally Posted by deb54 (Post 1052828)

Deb, this is FASCINATING. Thank you so much for sharing. Did your specialists ever tell you straight out that your neck pain was probably caused by a lack of B12? Do you know if your pain comes right back if you stop taking the B12? And lastly, did you ever try another form of B12 to see if you were just sensitive to the methyl-b?

Quote:

Originally Posted by CrimeofPassion (Post 1052978)

Yes, to all 3 questions.

First off, tried a 2 different brands of methylcobalamin. The one mixed simply with water, pure cobalt stopped my breathing. Because of that, I was sent to an allergist who, after testing, determined i indee had a metal allergy. Of note: as an artist, I spent the first 20 yrs of my life licking the paintbrushes, as was instructed by our teacher. It gave a perfect point to the brush. ekkkk. Well, not good, as we used cobalt blue for everything. Okay, I already knew I was allergic to metals, gold, silver, etc...No doc would believe I could be allergic to cobalt, though.

It was never recommended to me to try the hydroxy or adeno-whatever...I will react to anything given to me. My team of docs are trying to keep my system from doing anymore changes. For example: I've recently been put on a topical magnesium. I can't sleep when I use it, flat out. I use it for muscle spasms. The muscle spasms (I have snapped an ankle tendon twice due to them) come when I use my narrow band uvb lamp for psoriasis. The vit d I get from the therapy lamp, quite a bit, sends my potassium/calcium into fits. go figure...

My neurologist told me that b12's job was to keep the myelin around our nerves in good repair. Think electrical wire that's been worn. It malfunctions. With my lifetime of inadequate b12, my myelin was shot. Add b12 and it began to rebuild..puff up, as I was told. Too little b12, even now, results in pain. Due to my adverse reactions I was told to not take it for 2 weeks..did that..back to level 10 pain by day 2. I then restarted on the very small doseage with less impressive results but still, better than horrible pain. Another thing that b12 does is to relax our muscles, tendons...that also helps with any pain.

I use the subligual because of several small bowel resections. I can't tollerate any pills or capsules, and the methyl-b sublingual supposedly is absorbed by the nerves directly under the tongue, heads to the spinal c3-4. I believe this is the area where b12 is then directed to it's various chores. It's the key that opens our cells ability to respond to the specific functions required.

Also had my lungs, heart, and sinuses checked out, as well as testing for possible ulcer and gerd. All major body parts are working fine.

I don't understand why there aren't others who react as differently as you and I do, but perhaps these others simply give it a try and then simply quit taking it. I certainly can't be the only one with oddball autoimmune diseases that needs b12.

deb..