Discussion in 'Fibromyalgia Main Forum' started by bea6407, Jan 14, 2011.

  1. bea6407

    bea6407 New Member

    My blood test showed me to be severly low on B12. My Dr ordered shots every day for a week and then once every two weeks. I read ou can't OD on b12 so I startrd to take the one daily that you put under the toung. Any one else had this problem? I still feel tired. Don't know if its helping. I was hopeing for just a burst of energy even if it was short lived.
  2. mbofov

    mbofov Active Member

    Did you do the week of shots, and then follow up with once every two weeks? To be honest, even if you did that, it's probably not enough. My doctor has had me doing B12 shots 3 times a week for a couple of years (5,000 mcg. of hydroxocobalamin) and my B12 is still low. He says I have a metabolic problem (CFIDS!) The shots have not solved CFIDS but I believe I would be worse off without them. Your doctor should retest your B12 levels after you've done what he recommended.

    The sublingual tablet you're taking - what type of B12 is it (hydroxocobalamin, methylcobalamin or cyanocobalamin) and what dose? Hydroxocobobalamin and methylcobalamin are the best to take. Anyways, it will take time to build you up.

    I've read too that you can't OD on B12. I think with CFIDS (I don't know about FM) we have a problem utilizing B12. That definitely seems to be the case with me. It may be related to the methylation cycle block which Richvank writes about.

    Anyways, do give it some time. After a couple of months you can ask your doctor to retest your levels and see if they've improved.

  3. TigerLilea

    TigerLilea Active Member

    Hi Jamin - Your information about iron loss is incorrect. Women lose blood during their menstrual years, however, that should be the only time we lose blood. Outside of accidental bleeding (ie cuts from accidents) and medical procedures (ie surgery, blood testing, or donating blood), we should NOT lose blood. Anytime we have unexplained blood loss or low ferritin levels it needs to be checked out as it can be an indicator of cancer.

    Our bodies do replace lost blood. According to the American Red Cross "Healthy bone marrow makes a constant supply of red cells, plasma and platelets. The body will replenish the elements given during a blood donation – some in a matter of hours and others in a matter of weeks".
  4. hermitlady

    hermitlady Member

    I did Methyl B12 injections at the drs office and then at home. I started w 3x a wk, then reduced the frequency as my levels went up. I used the injections for more than a year.

    Honestly tho, I never felt any benefit from the injections or from taking them sublingually. Everyone is different tho.
  5. richvank

    richvank New Member

    Hi, all.

    Supplementing B12 at high dosages can be helpful in CFS, as Drs. Lapp and Cheney first found several years ago. But the more recent treatment breakthrough based on the partial methylation cycle block is that it's important to take one or both of the active folates together with high-dosage B12 supplementation, in order to get the methylation cycle back up and to restore glutathione to normal levels. The active folates are 5-methyl tetrahydrofolate (sold as Metafolin or FolaPro or Deplin or MethylMate B) and folinic acid (also known as leucovorin). In the simplified approach I have suggested, both folate forms are included.

    Best regards,

  6. inprog

    inprog Member

    Thanks, Rich, for that timely message as I am doing a free trial that Prohealth is offering of the B-12 Extreme and feel like I am going to lose it metabolically. I am only on day two. So will consider the folates you mentioned. Should I also not take a regular B-complex as well maybe as well? I don't think I am going to get this all together for the 30 day free trial but shall consider since I am feeling bad enough on the Extreme to quit. Thanks for your imput.
  7. richvank

    richvank New Member

    Hi, inprog.

    I'm a researcher, not a licensed physician, so I can't give individual treatment advice unless a physician is on board to evaluate my suggestions for the particular case.

    However, generally speaking, the enzymes in the methylation cycle and related pathways do need the other B vitamins as well, particularly B2, B3, and B6. Also, generally speaking, it's a good idea to supplement the B vitamins as a complex, because they work together in the energy metabolism and also in the neurotransmitter metabolism.

    If you would like to see what is in the protocol for the Simplified Treatment Approach, the latest revision is posted at www.cfsresearch.org Click on CFS/M.E. and then on my name there. My other papers, articles and talks are available there also, and they give discuss the biochemistry that is behind this treatment and the history of its development, used and clinical study. This website will be up until the end of this month, when it will be shut down.

    People on this type of treatment need to be under the care of a physician, because a small number have reported serious adverse effects while on it. These are discussed in the article there that is dated July 18, 2007.

    Most people with CFS who have tried it have experienced significant benefit from this treatment. You can see how its effectiveness has been rated in comparison to other treatments and lifestyle changes on the "crowd-sourced" site CureTogether.com


    It has been running near the top of the actual "treatments" there, though several of the lifestyle changes have received higher rankings. These lifestyle changes may well be helpful, but I don't think any of them are curative. The methylation treatments have been found to contribute significantly in a few cases I'm aware of in which recovery has been complete or nearly so. I think that some of the negative reports on this treatment that have been posted there have resulted from the detox symptoms that most people experience when they start the treatment. I don't think there is any way around having these, because the stored toxins in the body must be mobilized and excreted, and this necessarily involves moving them into the blood stream where they can affect other cells and produce symptoms.

    I hope this is helpful.

    Best regards,

  8. inprog

    inprog Member

    Thanks, Rich, for your thoughtful reply. It might necessitate going to another area of my state where there is someone in Santa Rosa, that area who might be able to work with me for a doctor there. I have been to see so many doctors. On my own going to Naturopathic clinics, I have even been hospitalized for homeopathics which affect me severely. Your contributions are always appreciated and I learn so much though most fails what I try because maybe I don't put it all together right. Still your response to my question is appreciated. I failed to be able to withstand taking the B-12 alone with the same feelings of long ago occurring to stop it in time to avoid a hospitalization I cannot afford. They would not know what to do with me anyway as before but to tie me down in four point restraints. Lyme that I have is certainly a factor as well as the CFS for twenty years.
    Thank you,
  9. richvank

    richvank New Member

    Hi, inprog.

    Being tied down with four-point restraints does NOT sound like fun!

    I hope you will be able to get help from a knowledgeable practitioner.

    Based on experience so far, it appears that Lyme disease, if present, must be treated specifically in addition to treating to lift the partial methylation cycle block, which raises glutathione. The bacteria that cause Lyme disease have been found to deplete glutathione, and unless they are specifically dealt with, it does not look as though the other aspects can be corrected.

    Best regards,

  10. inprog

    inprog Member

    Thanks, Rich, for your reply. It is a catch 22 for me in that I do not seem to be able to take Lyme treatment even of the simpliest nature. I try not to get depressed about it. I do know people who had the best health insurance and they died in a hospital. It did not save them. We all know someone like that. For some of us with no insurance (my father was killed in a hospital mistake) maybe for some of us, it is a blessing to have the challenge to get well some other way.
    Best to you,
  11. Mikie

    Mikie Moderator

    My neighbor, a man, just got his bloodwork back and is low in B-12. He is to take 1000 mcgs. a day until he gets back to his home state and can start the injections. The doc said being low in B-12 can lead to anemia.

    Love, Mikie
  12. Mar19

    Mar19 New Member

    My B12 levels have tested on the low side for many years. I finally got a doctor that would check specifically for intrinsic factor and it was discovered that I lacked that. My body is incapable of absorbing the B12 from foods, or in my case, even supplements.

    I've been getting B12 shots monthly, which I thought was very "conservative". My blood levels now show a slightly more normal level of B12, but I have yet to feel any difference physically. I do take the sublingual B12 from here at ProHealth, as I stocked up on them a long time ago. Even with the supplemenetal dosage and the monthly shot I'm still on the low side of normal.

    I've recently acquired a new primary care doctor. Perhaps I can persuade her to Rx B12 shots for me and teach me how to inject myself?

  13. shari1677

    shari1677 New Member

    Mar19 - a while back I was diagnosed with a low B12 level. I got the shots every week for a month, then once a month. It didn’t help. My doctor gave me a bottle of B12, plus a handful of syringes so that I may give it to myself everyday. It is really easy - nothing to it really. Did it help? As soon as I gave myself a shot, I felt a surge of energy, but, it only lasted maybe 30 minutes.

    I even went so far as to inject myself 3x a day (without physician consent), and it didn’t make a difference.
  14. JLH

    JLH New Member

    I get a shot of B12 every 3 months when I see my Rheumy. I also give myself a shot of B12 once a week and have been doing that for quite some time. I have never yet felt that burst of energy!!! I doubt that I ever will, either! I just hope my blood level will eventually not be low on B12!!

    I don't mind giving myself a shot (in the stomach) of the B12 weekly, because I give myself insulin shots daily anyway, so it's no big deal!!