I Found Help with Fatigue/Exhaustion!!!!

Discussion in 'Fibromyalgia Main Forum' started by layinglow, Mar 7, 2003.

  1. layinglow

    layinglow New Member

    I have had the best three days of my life, in over a year! I actually feel as if I have been reborn.

    Let me preface this by saying, I am so aware that each of us reacts differently to meds and supplements, but if you haven't given this a try---I would highly recommend it.

    After researching Kutapressin and B12 therapy, I spoke Monday at my doctor's appointment of my interest in it.
    He said he has used it with great success with those who have a viral onset of CFS. I am predominantly FMS, (not viral onset), with CFS secondary. He said he was more than willing to give it a try, but wanted me to be aware, that it has not been as effective, the costs of Kutapressin are on the high side, and lastly it can take 3-4 months to have results.

    Let me back up a second. With this Doctors help, most of my symptoms have been relieved. Pain is now under control, IBS almost non-existant, Systemic Candida gone, Sleep, uninterupted (use to have 20 wake ups a night), Anxiety, Sensory Overload, and RLS alleviated. The remaining symptom I had left was severe, unrelenting exhaustion. (I had to will myself to walk across a room). This is the symptom I wanted addressed at my appointment.

    His suggestion, instead of the Kutapressin/B12 therapy, was B12 injections alone. I said give me the goods, I'll give it a try!

    I cannot believe how instantaneously---this helped. It was immediate on the first day, and has been so every day. This is day four. I am taking 1/2 cc. am. He has told me to play with the dose (up to 1 cc./day), and the interval between dosages. After 5 days I am going to try every other day, at 1/2cc.

    I did some research on B12 deficiency. I discovered that those with gastric problems, often cannot absorb B 12. (Gastric surgery, Bacterial/Fungal Overgrowth, IBS/Leaky Gut, etc.) I had been taking oral B-12 for 6 months, with no effect.
    Due to the damage from IBS/leaky gut, and candida overgrowth, I believe I was not absorbing the B-12, orally.

    The symptoms of B-12 deficiency fit me to a tee.
    Extreme Fatigue
    Neuro probs (numbness in extremities, poor memory, poor cognitive skills, word recall impairment)

    Unfortunately, once the damage to neural system has been done, it cannot be reversed, but the progression can certainly be stopped.

    I feel like a new person! I have gotten tired at 7-8 pm., nightly, but this feels more like a "normal end of the day tired". The exhaustion is gone, I feel almost like I did pre-FMS. Prior to this I was a wreck, not functioning, well at all, due to the exhaustion.

    I hope this lasts! If you haven't given this a try, you might consider doing so for fatigue. It has been a godsend for me, and I just wanted to share my experience.

    Best wishes,
  2. kellbear

    kellbear New Member

    I have read a lot about this. Where do you get these injections? Does your doctor do them or do you have to go to a holistic doc? I am happy for your improvments.
  3. Tattoopixie

    Tattoopixie New Member

    That is such great news! Keep us posted on this please!
  4. Bellesmom

    Bellesmom New Member

    My naturopath, a new dr for me, suggested the shots as a way to help the fatigue when I was there in January. I was reluctant to learn to give myself the shots but I think between the time lapse since January and your interesting story I will work up my nerve because it's very inexpensive to give yourself the shots at home as opposed to driving and paying the $15 or whatever at an office location.

    My dr said 19 out of 20 of his patients show improvement when given these B12 shots. That has to be encouraging even to a skeptic. And it's a lot cheaper than some of the treatments out there.

    I know, I know - what works for one doesn't necessarily work for the other but I am going in on March 28th and will definitely try this. I am so weak and exhausted all the time I can barely drag myself around. With the pain on top of that and barely able to walk anyway I am now convinced to learn to "shoot" myself.

    Thanks to you and all the nice people on this board that make the effort it takes to come to the computer worth while.

  5. Plantscaper

    Plantscaper New Member

    Someone else indicated that they had a side effect of burning sensations on arms, leg and face from B/12..have you had that? and did it help neurological symptoms?
  6. RedB

    RedB New Member

    For me, the sublingual was just as effective. Have been taking for just over a year, and they gave me my energy back. Just in time to be a Grandma for the first time!

  7. sb439

    sb439 New Member

    that you've so much improved, LL!
    Can you tell us whether it's methylcobalamin or hydroxycobalamin you use?
    Also, what is the source of information that the neuro-damage is permanent?
    Many thanks,
    [This Message was Edited on 03/07/2003]
  8. tandy

    tandy New Member

    I'm really happy it helped you!! I had my primary dr. test me once(a couple yrs ago)and he said I was borderline.
    So we left it alone~ But with me having FM and extreme tiredness even after a decent nighty sleep,I'd say its worth a shot! Can the shots be given right there &then?
    My next appointment is the end of april,(I just went last week)I'm gonna ask about this....THANKS!
    I hope they keep working!! and don't overdo it!!
  9. mcondon

    mcondon New Member

    I strongly recommend you read Paul Cheney's presentation on the theory and recommended treatment protocol to reduce CFIDS and fibromyalgia symptoms. It can be found at the web site below:


    He is a strong proponent of high dose of vitamin B-12 (10,000-25,000 mcg per day - hydroxycobalamine form, not cyanocobalamine) given once or twice per day by injection. He believes it is the most potent detoxifier in the Central Nervous System for Chronic Fatigue Syndrome sufferers and has found it to be the best single treatment in the arsenal for reducing central nervous system damage, which he believes is temporary and reversible.

    I also recently saw him at an office visit and he believes that the recently published research of Dr. Martin Pall at the University of Washington proposing "unified theory" of CFS provides even stronger theoretical support for high dose treatment with vitamin B-12 injections.

    Cheney has other treatments in his protocol (including undenatured whey protein, MSM, high-dose Coenzyme Q10, low dose growth hormone injections, Isoprinosine (a prescription immune-system "modulator"), low-dose neurontin/doxepin/klonopin, and numerous lifestyle and dietary recommendations, including a rotation diet) but Vitamin B12 is a cornerstone that he says almost always provides significant benefits in the high doses he recommends.

    I strongly recommend you read his presentation and track down some of Martin Pall's documents on the web (see: http://molecular.biosciences.wsu.edu/Faculty/pall/pall_cfs.htm) for a rationale on why B-12 works and on what else might help.

    Best of Luck to you
  10. sb439

    sb439 New Member

    Thanks for the mention of Cheney's and Pall's research.

    I know that hydroxycobalamin is given intravenously, which one can't do oneself, and that methylcobalamin (not cyanocobalamin) is given intramuscular, which one can do oneself, I wondered whether hydroxycobalamin can also be given intramuscular. (methylcobalamin taken sublingually gives me terrible headaches.) Does anyone here know?


  11. kerrymygirl

    kerrymygirl New Member

    I tried these injections for along time plus diet etc. Unfortuately did not work, we had some temporary results at clinic. I do hope this is the answer for you. I know when I had a different treatment in a study I was in I found some of myself again, it was wonderful! I just have so many other things wrong. That is why what works for one does not always work for all. Just enjoy it!!!!
  12. layinglow

    layinglow New Member

    Okay...will try to answer...I printed the posts so I wouldn't miss any, I hope.

    Kellbear--I get my B12 and syringes from my D.O., he is a days drive away, so I do the injections (IM) at home. I am using a U-100 insulin syringe very small guage needle! I honestly do not feel it going in. Injection site is meaty area at top of buttocks/hip.

    Pixie--Thanks! Will keep you posted!

    Pam--Give it a try--not difficult, not painful--and maybe you will have the same results!

    Plantscaper---The sublingual was doing nothing for me---tried it....No there has been Absolutely no burning, sensations anywhere, no side effects at all. I don't feel any sensation during injection--and the area does not hurt afterward.

    Red--Congrats! Glad you have some energy to play with your darling grandchild---aren't they great?

    sb439--I am using methylcobalamin. Have that source of neuro damage on other computer, saved with about 15-- B12 sites, in my favorites---will post to you when I find it.

    tandy---I forgot to mention that from another source I have that test levels are not always good indicator---I am trying to remember off the top of my head why--I may have saved that info on my other computer--- I'll look for it.

    Jody--will keep you informed, you might want to give an everyday or every other day...a try

    Mcondon--Thanks for all the info! I have printed the websites out you mentioned. The moderators will delete this as we are not allowed to post urls. Might I suggest that you type another post on this, and just give the key words to be used for a search engine, that would bring these up. Certainly others will like to have them. I also use low dose klonopin, and large dose Coenzyme Q 10--and have been doing so for quite sometime. The klonopin has been another godsend. Really helped with neurological symptoms (sensory overload, attention deficeit, and most of all sleep and RLS. I hope Cheney is correct when he says the CNS damage is temporary and reversible!
    Thanks so much!

    sb439--Sorry I dont know the answer, but someone who does..will come along, I am sure!

    Madwolf--The healer must remember to heal himself :)
    Does your dear bride use the B-12? Isn't her DX CFS?

    Kerry--Thank so much for your well wishes, they mean alot. I know--I have tried many other things that have brought relief to some here. I was about to give up, on trying new things...thank Goodness, I didn't. And even if this is not lasting, I can say---Whew!!! I got a breath of fresh air!

    Thank you, everyone that responded to my post. This is such a wonderful, supportive place. Please know that everyone I have come to know here, are in my prayers, and thoughts for wellness.
    Best wishes,
  13. jjoys

    jjoys New Member

    but this really makes me want to start trying different therapies, and I think I'll start with B12, thanks to you. Thanks for the info. It's so encouraging.
    BTW, I love your username. Fits the dd.
    [This Message was Edited on 03/07/2003]
  14. klutzo

    klutzo New Member

    Do a web search for "pernicious anemia" and you should find plenty on the nerve damage caused by B12 deficiency.
  15. tandy

    tandy New Member

    thanks for checking on that for me! One question...How the hell did you remember all those questions we had,to reply too??you answered each individual!!!I'm in AWE!!LOL
  16. layinglow

    layinglow New Member

    Hey Tandy--lol...heck no I didn't remember!! I cheated and printed out all the posts!

    Denice--I don't think you are being a wet blanket at all. I have already come to the conclusion that if this doesn't last, I will have been blessed many times over. Just having a reprieve for awhile, is absolutely wonderful! Thank you, for your post, I will be on the lookout for anything out of the norm.

    Spacee--hey girl! This is my mentor! She has spent so much time and energy discussing kutapressin and B-12 with me. I am ever so thankful, girl!

    I found the info---on B-12 Blood levels not always being a good indicator, and another that mentions the nerve cell damage. Day 5 :)

    Vitamin B12 deficiency linked to neuro-psychiatric
    KINGSTON, CANADA. Dr. Dianne Delva, MD, Assistant
    Professor of Family Medicine at Kingston University

    Although the only formally recognized disorder
    linked to a cobalamin deficiency is megaloblastic
    anemia, it is now becoming clear that many neurologic
    and psychiatric symptoms may also be caused by a
    vitamin B12 deficiency. Ataxia (shaky movements and
    unsteady gait), muscle weakness, spasticity,
    incontinence, hypotension, vision problems, dementia,
    psychoses, and mood disturbances are but a few of the
    disorders which have recently been linked to possible
    vitamin B12 deficiencies. Dr. Delva points out that
    these disorders may occur at vitamin B12 levels just
    slightly lower than normal and considerably above the
    levels normally associated with anemia. She also
    cautions that the blood level of cobalamin is an
    unrealiable indicator of deficiency and that tissue
    levels of the vitamin may be quite low even though the
    blood levels are normal. The best test of cobalamin
    deficiency involves measuring the blood levels of
    homocysteine and methylmalonic acid. If the level of
    these two precursors to the metabolic reactions
    controlled by cobalamin are high then the vitamin B12
    level is low.
    Delva, M. Dianne. Vitamin B12 replacement - To B12 or
    not to B12? Canadian Family Physician, Vol. 43, May
    1997, pp. 917-22


    Symptoms tend to develop slowly and may not be
    recognized immediately. As the condition worsens,
    common symptoms can include:

    Weakness and fatigue
    Lightheadedness and dizziness
    Palpitations and rapid heartbeat
    Shortness of breath
    Bleeding gums and mouth sores
    A sore tongue that has a red, beefy appearance
    Nausea or poor appetite
    Weight loss
    Yellowish tinge to the skin and eyes

    If low levels of B12 remain for a long time, the
    condition also can lead to irreversible nerve-cell
    damage, producing the following symptoms:

    Numbness and tingling in the hands and feet
    Difficulty walking
    Muscle weakness
    Memory loss

    Additional Info

    National Heart, Lung and Blood Institute (NHLBI)
    6701 Rockledge Dr.
    P.O. Box 30105
    Bethesda, MD 20824-0105
    Phone: (301) 592-8573

    Have a great weekend all! LL
  17. Sindy-Uk

    Sindy-Uk New Member

    that B12 is working for you. Last year, when I had my lab work done, my B12 was in mid range. My doctor suggested I try the B12(hydroxocobalamin 10,000) injections for about 2 weeks to help me with energy and detoxification, which I did. Unfortunately they did not make any difference.For me there are probably so many other problems and deficiencies. I had, and still have iron, magnesium and selenium deficiency which I am trying to rectify. I think everyone should give B12 a try. I have also been told that when you take high doses of B12, you should also take extra folic acid.

    For SB439- Susanne...Hi, my hydroxocobalamin was give intramuscularly.


  18. Witmer

    Witmer New Member

    Could you please tell me where you get everthing for the b 12 shots? I'm very desperate as I feel that I can't take another step. I see my doctor on Monday, and would love to have the information to give him.

    Your a god send, Thank you.
  19. marta

    marta New Member

    What good news!

    I believe that many of our symptoms are orginally caused by malabsorbtion of vitamins and minerals due to the types of foods we eat. Today's diet is horrible for us.

    I did try the B-12 shots (with folic acid) right when I was first diagnosed but the first one had no affect and the second one kept me awake for two nights. Your post reminds me that maybe it's time to try again.

    Thanks. Now be sure your diet is a good as you can make it to help balance out the B-12. B vits are synergistic.

    LOL - I need to learn to read the posting dates! I do hope B-12 is still helping you. m.

    [This Message was Edited on 06/20/2006]
  20. Cromwell

    Cromwell New Member

    My mom had to have B12 injections, but when I tell my doctors this, they say my blood looks OK for B12. Is your doctor OK with this or were you low on B12? I DO have GERD and take Prilosec for years.

    Love Anne C

[ advertisement ]