Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Pernicious Anemia, neurological/brain damage, B12 injections. I need information.

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by _June, Mar 4, 2013.

  1. _June

    _June aren't I pretty? *baaah!*

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    I want to get tested for Pernicious Anemia. I've had pretty much all the symptoms for 7 years. Most concerning of all, to me, is brain damage (and tachycardia).

    I get about 950% of the Recommended Daily Intake of B12 naturally through my diet, as well as 250% of folate.
    Because the brain damage hasn't improved, it must mean that my body is unable to absorb the B12 I eat, right?

    I can't afford doctor's visits (not even regular checkups).
    I'm not on medicaid or any sort of assistance.
    There are no online lab testing locations near me.

    1 - Is there a way I can get a test or diagnosis so I can get those B12 injections?
    2 - Does anyone have information about B12 sub-lingual efficiency compared to injections, when there is neurological damage already?

    I'm in Maine, near Augusta.

    Thank you for your help!
     
  2. _June

    _June aren't I pretty? *baaah!*

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    Oh, I should mention I plan on buying the Jarrow's 5mg active sub-linguals if I have some extra money this month, that's why I'd like to see any information about it when the patient already has brain damage.
     
  3. Marianarchy

    Marianarchy

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    I had significant neurological symptoms and nerve pain before being diagnosed with Pernicious Anemia. My serum B12 level was never clinically low, but my body was not absorbing the high doses of subligual methylcobalamin I was taking.

    My Neurologist told me studies have shown that serum levels of B12 have very little to do the amount of B12 actually getting to your brain and nerves. There is no easy way of testing the amount of B12 in the CNS and only a few academic centers can even conduct the testing. He said he empirically prescribes injectable methylcobalamin for his patients with neurological symptoms, even when they don't test low for it.

    My suggestion to you would be to look for the studies online and take them to your PCP in hopes of convincing him/her to prescribe injectable methylcobalamin and let you try it. You can ask for the testing for pernicious anemia, but that's money you could use for the PCP office visit instead. It is possible that you could have a low level of B12 in your CNS (that a blood test wouldn't detect) and NOT have pernicious anemia This is a very safe supplement- if you get too much it is excreted in your urine.

    Whether subligual of injectable, make sure you are taking methylcobalamin, it's the type that heals your brain/nerves. Ideally, you want to combine it with methyl-folate. Jarrow Formulas makes this in a capsule and it's fairly inexpensive. I buy the injectable methylcobalamin and syringes from McGuff Pharmacy. Your doc will need to write an RX for the syringes too. I take a VERY high dose of B12 (10mg three times a week) for nerve pain and it runs about $25.00 a month.
     
    Bead Dog likes this.
  4. Enid

    Enid Senior Member

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    Don't know about brain damage (except "high spots" on MRI brain imaging). However severe cognitive problems were/are reversed. Follow recognised ME supps etc my best advice.
     
  5. Freddd

    Freddd Senior Member

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    Hi June,

    Where near Augusta? I was a Sugarloafer (ski patrol) for a while and summered at Lake Megunticook near Camden or Shapleigh for the first 25 years of my life. I worked one summer at The Lobster Pound.

    I'm the ONLY person here who claims to have healed ME/CFS/FMS and largely reversed 15 years of Subacute combined degneration. I was falling and perhaps a few weeks away from a wheelchair with what I was doing. I had hot and cold multi sensory hallucinations, memory problems, cognitive problems, word finding problems, depression, mood and personality changes. Everything but psychosis or dementia. Now mosrt all of it has been reversed and I'm perhaps 6 months of not enough 5 star MeCbl from a wheelchair, at the rate it was going at the end. I'm still ataxic in the dark but I can balance on one leg, with my eyes open in the light, and work on roofs etc.


    2 - Does anyone have information about B12 sub-lingual efficiency compared to injections, when there is neurological damage already?

    I do. I corrected most of it with sublinguals and curtently maintain remission and further healing with sublinguals. Sublinguals to correct CNS damage, if it can happen for you, will cost $6 to $11 dollars a day. The injections were costing $450/month form the pharmacy. The Metafolin could cost $2.50 a day. Everything else can likely be done for $1/day total. However, one doesn't start there. One can start at maybe $60/month. There will be substantial changes before it goes beyond there.

    I have done it and am maintaining it. I have had a couple of major setbacks, glutathione was one and when Jarrow MeCbl went bad was another. So far I have mostly recovered from those. Setbacks are expensive.

    One other thing, if it has a chance of working you will know likely within hours of the first dose if you take a 1mg first dose. It can be rugged. Neurological healing is painful and disturbing as everything starts changing and doesn't stop for perhaps 1-2 years. However, that might not start until there hasd been six months of body and peripheral healing to the point it can support neurological healing. When the neurological healing period there appeared to be a cahnce to "relearn" emotions and all sorts of things. One has to direct ones thinking to not get caught up in all of ones fears or it molds the changing brain with that as it's reality, or at least it seemed to me in going through it and observing others. Hallucinations, blurry vision, alterations in senses,, dimming, confusing, tastes and smell alterations, all can change in the first hours for many and continue changing towards normal. Functional items change in hours to weeks. Healing takes weeks to years. It is a journey of 10,000 steps and every one of them is a different way to not yet be healed.
     
  6. Freddd

    Freddd Senior Member

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    NO NO NO

    The only one that could work Is Enzymatic Therapy B12 infusion. Really.!!

    DON'T WASTE YOUR MONEY.
     
  7. _June

    _June aren't I pretty? *baaah!*

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    Freddd
    The enzymatic therapy b12 infusion is chewable; doesn't that mean it actually gets digested, instead of being absorbed by the skin in your mouth? If I have absorption problems, it won't work for me, right?

    I replied to you on the 'b12 documentary' thread, where you asked for my symptoms, please take a look.
    This link goes directly to my post on the "B12 Documentary" thread.

    Thank you everyone for the replies, I'm really excited to start taking B12! My husband will get some next paycheck. Wish me luck! Maybe I'll become smart again!
     
  8. Freddd

    Freddd Senior Member

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    Hi June,

    The FDA requires all vitamins to be labeled as chewable or oral, not sublingials. Technically they stop the compnaies when they get wind of it. Sublingual is reserved for FDA tested and approved meds. So I would say, not being the manufacturer, take it sublingally for 20x as much absorbtion.
     
    _June likes this.

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