Might help nerve regrowth/B-12 Methylcobalamin
AnonymousJanuary 8, 2007 at 2:49 pm
Hi all – My name is Debbie and I’m new to the forum. GBS dx Aug. 06. I’m feeling pretty good now, except for my feet/toes. Still not too steady on my feet, but I’m getting there.
I was wondering if anyone has had any success taking large doses of the supplement B-12 Methylcobalamin? I didn’t even know there were 3 different types of B-12. I’ve been reading about how this type of active B12 is supposed to help more with nerve regeneration. Even though GBS nerve damage is not from a B-12 deffiency (see below), I don’t see why it couldn’t help GBSers or those with CIDP. I just started taking it this past weekend. I’m taking 1000mcg 2x/day (equal to 2mg/day). My husband found it at the “Vitamin Shoppe” for around $14.99 for 120 lozenges, 1000mcg each. You dissolve them under your tongue. They’re supposed to be cherry flavored, but they really have very little taste at all. I decided it couldn’t hurt to try it. Any info or comments would be appreciated. Here is some info I found online that I thought I’d share:
[FONT=Lucida Console]B-12 Methylcobalamin donates methyl groups to the myelin sheath that insulates nerve fibers and regenerates damaged neurons. In a B12 deficiency, toxic fatty acids destroy the myelin sheath but high enough doses of B12 can repair it.[/FONT]
[FONT=Lucida Console]B12 – when taken as part of a “B-complex” vitamin, may help reduce inflammations and strengthen the immune system. [U]Methylcobalamin is a form of B12 that is NOT a component of basic B-complex vitamins, and is important to nerve growth and maintenance.[/U] [/FONT]
[FONT=Lucida Console]Methylcobalamin is an essential component in the process of building nervous tissue. It is important contributor to nerve growth, and maintains and repairs the critical, protective nerve sheath.[/FONT]
[FONT=Lucida Console]Methylcobalamin’s action is directed at the nerve’s myelin sheath, which is like a layer of insulation around the nerve. It protects the nerve and helps the signal travel along its designated path correctly. It appears to promote protein synthesis, accelerating cell division. Myelin sheath formation at the site of the damage is enhanced. This may, in part, explain recent findings that ultra-high doses may enhance nerve regeneration.[/FONT]
Here’s another link to a long article about B12 Meth. If you don’t want to read the whole thing, scroll down to the “Different Forms of B-12” section and read the 2nd paragraph where they mention CIDP.
AnonymousJanuary 8, 2007 at 7:00 pm
These studies are worth bringing to the attention of your doctor, who has the training to chase down and understand the ramifications. Researchers can also tell a lot by the quality of the journal that the research is published in — something you neglect to mention.
I did some sleuthing of my own and came up with a reference,
[i] Journal of Neurological Science (1994 Apr. 122:140-143)[/i]
[quote]The scientists stated that ultra-high doses of methylcobalamin might be of clinical use for patients with peripheral neuropathies. The human equivalent dose the scientists used is about 40 mg of sublingually administered methylcobalamin.[/quote]
It might work. Assuming that these guys are reputable researchers, are you ready to down 40 pills a day? You could get 5000mcg lozenges, then you’re down to 8-a-day, but I’d chat with a doctor before doing anything which required “ultra-high doses” of anything.
AnonymousJanuary 9, 2007 at 7:30 pm
The first time I got GBS was in ’86 and my doctor had me inject B12 into my thigh every other day, I think. It was methylcobalamin. I was able to walk the whole time but not well. I took other supplements as well.
The second time I got GBS was in September of this year and it was a lot worse. I could not get an appt. The office claims he is retiring and I know he isn’t. So I took the Vitamin Shoppe sublingual cherry lozenges as well as B complex capusles ( 100 mg 4 times a day) You should not take B12 or any single B vitamin without taking a complex. It tends to give you a deficiency in the other B’s if you don’t have a complex. I think it has kept the pain down as I did not need neurontin. I took acetaminophen when I had pain.
With my supplements I have been able to stay at home and skip the IVIG, PP, etc. WHen the breathing got difficult, I took MSM – it is great for breathing and it worked.
As for bringing this knowledge to your doctor, I found that 90% of the doctors are not openminded enough to listen. Good luck if you find one…and hang onto him!!
AnonymousJanuary 9, 2007 at 11:39 pm
Thanks for writing. So sorry to hear you’re dealing with your 2nd bout of GBS. I am taking a B-complex along with the B-12 Meth. I haven’t been taking it long enough to notice any benefit yet. I have an appoint in a few weeks with my neuro and will try to talk to him about the supplements. I know what you mean, most docs don’t seem to be too thrilled about discussing vitamin supplements. How much B-12 Meth are you taking now?
Miami, FL 😎
AnonymousJanuary 10, 2007 at 7:30 pm
I was taking one lozenge twice a day….but sometimes it gets me wired. So I am not sure if it is the B12 or me just climbing the walls from living alone on the floor for three months. It would have been so much easier if I had a family or friends that could stop by more than once a week. But I am glad that I chose to stay at home after the rotten treatment I got in the ER. It has been an adventure trying to survive at home. But when I recover, I want to forget these months of frustration and despair. Going it alone was rough. Plus being up here in PA in a little coal-mining town instead of my beloved TAMPA…..I grew up in this town and am amazed that most of my friends dropped out of site….one in particular…..told me she was the worst friend but couldn’t/didn’t want to help NOW…….duh….like WHEN was she willing to help..when I was better???? Oh, but I was in her thoughts and prayers. She lived a mile away….I do not have anger..she has to live with herself. I learned a lot about friendship from this illness.
January 12, 2007 at 10:54 pm
When I got sick…not knowing what was going on….I immediately started taking B vitamins. I knew enough about vitamins (used to be a supplement nut) to know Bs help the nervous system. Not sure if taking a fast approach in this department helped keep me from getting worse or not…hope to never have to find out by going thru it again! I do think with all the toxins we are exposed to daily an extra dose of precaution might help us a bit.
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