Hi everyone,
I just thought I'd post in hopes that this info might help someone.
I was diagnosed with post viral CFS in 1992, I struggled with the disease for several years (8). You all know how that is. I had been tested for B difficiency, but came up as slightly low but not anything that anyone took note of. My bloodwork always came up with MCV levels high - (nothing notable to any doctors). Finally, after a lot of research and juggling of doctors, I convinced one adventurous doctor to give me a B-12 shot. The shot changed everything. The depression, the fatigue, the inability to sleep, the shigles, etc. etc..... I have been on B-12 IM for 3 years and still going strong. This certainly won't help everyone, but I know there is someone that it will help. Ask your doctor, and be aware that the simple B vitamin blood work is highly insufficient in determining if you have a B vitamin uptake problem. Evidently, it is not nescessarily caused by an inability to absorb the vitamin intestinally, but can also be a problem with B vitamin getting from your bloodstream to your brain.
I hope this post helps someone. Take Care and don't give up.

This is so exciting! I just had my first B12 shot today. I had an exotic test done about 2 months ago that indicated functional deficiency of B12, and the doctor finally got around to prescribing it. I had done research about the condition, which causes fatigue, and in lieu of the injections, I started myself on the sublingual kind, and felt a little better. When he suggested that the injections were the only real help to be had, I was elated. I hope my results are as impressive as yours. Thanks for posting.

I hope so too!

Are you getting a loading dose? (Usually once a day for 1-2 weeks then one shot a month-or whatever frequency your doctor suggests) If you don't get the loading dose, the shot wears off quickly in the subsequent months. I didn't know this at first and had to go back and repeat it.

Best wishes to you, and I am excited for you.

Hi Swista,

Interesting information. I have been taking, alternately, either B12 or a comples B in liquid form. So you don't think it is for a lack of the other B vitamins but the B12 that is needed. Right?

I have had CFIDS since 1993. How long have you been on this regime and has it totally eliminated all symptoms?

Thanks!

Peregrine

I am not an expert, but I believe a B vitamin complex would absolutely be helpful. Evidently, B-12 works in conjunction with B6 and folic acid.

I tried B vitamins in several oral forms (pills and sublingual), they helped some but I didn't get the dramatic results that I got from the shots. From what I have read, the body is just unable to absorb a large enough amount of B-12 in any oral form. Even with the shots, it took the loading dose plus a couple of months to get consistent relief from the symptoms. (Although I did feel remarkably better after the first shot.) With CFS, it is believed by some (there is limited research) that there is a relatively normal amount of B-12 in our blood, but that some people are unable to properly synthesize it in their brain/spinal fluid for important enzymatic reactions.

I can say that on B-12 my headaches almost completely went away, the fatigue lessened significantly, depression and "brain fog" just absolutely disappeared and my general immune function improved. (I used to get shingles a lot- as well as every virus that came to town). I would estimate that i am at 90% of what I was before CFS, but of course I am a decade older too.... : )
I don't think B-12 injections are a silver bullet for CFS, but I believe there are a large number of people that could be helped. When you have a chronic debilitating illness that is not very definable, the doctors, however well meaning, often treat the symptoms and then file you away.

It is important that we don't file ourselves away also- become victim to other people's unspoken perceptions of us ( and our own deepening perception of our body betraying us). It is very easy to let our own self worth be insidiously undermined by this illness. I am not trying to give a pep talk, nor did I mean to prostelitize. I just know how it feels to lose what you have been and not be able to see that there may be some hope. Even if B-12 or all the other treatments do not help, you are somehow becoming something better than you were before even if your body isn't cooperating. At some point, the illness will lose its power over you. All of our spirits are stronger than we can ever know. We are alive.

So that was a tangent : ). I hope I answered the actual questions well enough.

thanks for the b12 advice ...and the tangent !

Are the B12 injections painful ?

anyone ever tried those B12 drops that you put under the tongue. They are ment to be as good as injections aren't they?

I don't think they are painful, but it's much better if a nurse or trained friend gives them in your arm.
Someone wrote to me and said that methyl b12 works wonderfully, but I have never tried it or the drops????

whats "methyl b12"?

I started taking B-100 complex, a week and a half ago. First it was like night & day, but as of the beginning of this week, the achiness & fatigue are back, even though I haven't changed anything else.

I have a friend who swears by B-12. Hers is in powder form which she mixes with water to make the liquid. She is somewhat bipolar anyway, but B-12 seems to set off her manic state. It is almost like a drug high. Of course she takes a double dose, which might have something to do with it.

I on the other hand am somewhat conservative with vitamins as well as herbs & drugs, so am afraid of taking too much, if that is possible with B-12, I know it is with some B vitamins.

I have not yet been "diagnosed" with CFS, but am monitoring my symptoms, and it seems very possible. I appreciate all the info here I've found from the veterans. I will continue to research the possiblities, and solutions for me. Thanks for the info.

It seems I can't get anything "normal". I get syndromes, like PMS, or TMJ, which isn't treated "normally" by insurance! Oh well, life goes on, and I'm hangin' in there!

I told my doctor that I had started myself on sublingual B12 with a B complex, and he said essentially that IM is the only way to take it. I'm taking the loading dose, as asked at the beginning of the thread...twice a week for 2 weeks, then once a week x 4, then finally once a month, indefinately I guess. I give them to myself, and they aren't painful at all. (I'm an RN, and he said go for it http://www.healthboards.com/ubb/biggrin.gif )

Good luck!!
Let us know how you do....