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    • #24211
      Dam B
      Participant

      I have noticed that as I take B12 injections myself, my hand and leg tremors stop or greatly subside. I use two different B12 (active forms) injections: Methylcobalamin (1ml) and Adenosylcobalamin (1ml). Every (average) 4 days I take one of them and this frequency helps at the moment. Only sometimes at the end of those 4 days (or some days later if I forgot) or when I have high stress levels during the 4 days (due to work), than the tremors are coming back for a short period. When stress level is reduced than the tremors do the same. To put it more in context, I am just diagnosed PD in the beginning of this year and I am not using any PD-medication.

      Interesting articles regarding B12:

      https://www.nature.com/articles/s41422-019-0153-8

      Active Form of Vitamin B12 Found to Prevent Neurodegeneration in Study of Animal Models

      Every day I also take a B-complex, Curcuma, Q10 and Vitamine D (all high doses or good products. Not sure if I can put brand names in this topic ;-))

      Does anyone else have the same experiences? And what is your frequency? If you use them, do you combine them also with other vitamins, etc.?

    • #24227
      Paulette Myers
      Participant

      Hi,

      The information about Vitamin B12 is very interesting.  Why do you take injections of B12 instead of taking it orally?  I was not aware that the average person could take B12 shots.  Do you go to someone to get them or take them yourself.

      Thanks for posting the article from Nature.

       

      • #24245
        Dam B
        Participant

        Hi Paulette,
        <p style=”text-align: left;”>Thanks for your reply. Maybe my information could help you and  others as well. I am taking the injections myself (in the beginning a little bit scary but it is for a good cause 😉 and injections are also scientifically better than pills. Pills are only between 1% and 10% effective based on studies. B12 Methylcobalamin injections are for example also used in Japan for reducing cancer tumors, but if you google you will find several worldwide scientifical studies. I buy my injections indirectly from a German pharmacy. They are better than the ‘normal’ injections I could get them from my local doctor. These are not the ‘active B12 versions’ and very cheap. I hope this will also help you and others… it is off course at your own risk, but B12 in high doses are allowed (see scientific studies). Good luck and hope to hear from you (or others) if it helps you as well.</p>

      • #24249
        Katherine
        Participant

        I have Pernicious Anemia, as well as Parkinson’s. This wasn’t diagnosed until several years after I had PD. Before the diagnosis of PA, I had to hold onto walls to be able to walk. I was constantly exhausted. After receiving 5 B-12 shots in a row, I could literally run a few steps. I received one shot every 4 weeks, then every 3 weeks. I HAD to keep my B-12 serum level to 1,200 or higher to received adequate benefits. (My doctor said this wasn’t necessary. She always looks at “numbers”, unfortunately, not the patient.) I was allowed by Medicare to use shots at home, but I preferred going in. Over the years, my B-12 dropped to the 600-range, and I felt unable to function. Finally, my doctor referred me to a Hematologist. He told me that sublingual B-12 has been found to work as well as shots.
        Apprehensively, I started using daily SL B-12 B-12, 5,000 mcg/day; it is an OTC medication. They are working even better than the shots, I am so relieved to say.

        • #24266
          Beth T Browne
          Participant

          Katherine.  I am confused as to what SL B-12, is.

          I get B12 in with other B vitamins, and that amount is only 300mg.

          So you take two different forms of B12 that you get OTC?

          Does this help your tremors?

          Thank you.

          Beth

           

           

        • #24365
          Katherine
          Participant

          SL means sub-lingual, under the tongue.  Bypasses the gut.

    • #24250
      Barbara
      Participant

      Very interesting article! Thanks. Since I am periodically deficient in B12, will speak with my neurologist.

    • #24349
      Doug Palmer
      Participant

      Do you inject yourself?

      • #24360
        Dam B
        Participant

        Yes  ;-), but you also can ask your doctor…

    • #24370
      Fran W
      Participant

      I recently read about high dose B1 for Parkinson’s.  Anyone else?  Protocol is very similar, high dose either injection, sublingual or oral.

      Either way this is exciting news!

      • #24382
        Dam B
        Participant

        Thanks for sharing. Unknown for me, do you have a link to this article?

    • #24373
      Barbara
      Participant

      I intend to discuss this with my PD neurologist .

       

    • #24377
      LARRY GLASS
      Participant

      I read your note with great interest.  I have been experimenting successfully with the two active B-12 vitamins you mention.  I summarized this in a letter to my neurologist at the beginning of May, that I would provide you, if I only understood how to attach it to this response.  Is there a way to do that?

      • #24381
        Dam B
        Participant

        Great news, that it works for you too. I am curious what is stated in you letter/summary. I think you only can add a link or a picture in a reply… maybe the moderator can help or a link to e.g. wetransfer.

    • #24428
      Fran W
      Participant

      The following link is a scientific assessment of B1 injections for Parkinson’s.

      Be one with Vitamin B1

      The book I am reading is

      “Parkinson’s and the B1 therapy”

      by Daphne Bryan, PhD, a PD  patient and associate of Dr. Constantini.

      Both are very interesting reading.

      • #24481
        Dam B
        Participant

        Thanks!

    • #24439
      Theresa Hupp
      Participant

      My HWP was recently diagnosed with low B12 and just started injections, plus supplemental vitamins. What PD symptoms are related to low B12?

      • #24482
        Dam B
        Participant

        For me the tremors, cramps and fatigue. You need to take it with B11 for higher effectiveness.

        • #24487
          Barry Block
          Participant

          What dose of B11 is recommended. Where can it be purchased?

    • #24458
      Laini Weitz
      Participant

      My neurologist predictably poo-pooed it saying there’s no evidence except in mice. Pfffft

      • #24484
        Dam B
        Participant

        The mice study is correct, but they are now ‘upscaling’ the research. And if you use levodopa your b12 values will also be lower…

    • #24460
      Barry Block
      Participant

      I have been taking sublingual B12 5,000 mcg for two weeks. So far there is little or no change in my tremors. Someone o this site said that sublingual was as effective as IM injections. What have others found?

      • #24485
        Dam B
        Participant

        Maybe for this person it worked, but “normally” the effectiveness for pills or SL is max 10%. The scientific studies are based on injections. If it is possible for you to get the 2 (or 1 of them) active b12 injections, maybe they can help…Please share us your experiences if it was possible!

        • #24488
          Barry Block
          Participant

          I’ll have my doctor give me a b12 injection. If it works, I can buy injectable B12 online. Ironically, it’s sold to pet owners, but cyanocobalamin is the same stuff. I’m a retired Dr., so I can self-inject it as necessary.

    • #24461
      Susan Albert
      Participant

      A fascinating discussion sharing the successes that Vitamin B1  HDT (High Dose Thiamine) is giving many Parkinson’s patients. Daphne explains how she found the Therapy and offers guidance to those looking to try it. Watch it on YouTube here

    • #24483
      Barry Block
      Participant

      What dose of B11 is recommended to be taken with the B12?

    • #24491
      Susan Albert
      Participant

       

    • #24495
      LARRY GLASS
      Participant

      I was diagnosed with Parkinson’s in 2013.  In about April, 2019, on Parkinson’s News Today I saw a summary of a study dealing with my LRRK2-G2019S mutation.  The study basically reported experiments on worms, flied and mice that  were genetically engineered to have that specific mutation.  The researchers found that administration of the adenosylcobalamin version of vitamin B12 (a/k/a dibenconzide) shut down this mutation.  I got the study and read more about it.  I found and began taking this version of B12 in lozenge form (since injections seemed impractical), with immediate and totally unexpected positive results–so that none could be a placebo effect.  My sleep returned to normal, and I discontinued the Klonopin I had been prescribed for sleep.  (One word of warning: during the first week I had nightmarish, horrific dreams.  Since then, I dream more frequently, and dreams are tame.)  A second benefit was a virtual end to constipation.  Another surprise was that my weight dropped from about 172-175  to 160-163–a new normal.  I had become hypersensitive to cane sugar, so that my whole head felt unbearably sweet just tasting it.  This aversion gradually subsided, but not completely.

      Subsequently, in October, 2019, in the hopes of helping me recover in other ways, I got it in my head to start taking the methylcobalamin version of of B12, because it has so many positive neurological  benefits.  And in January, 2020, I added fish oil/omega-3 fatty acid based on additional research.  In addition, I take Magtein (a form of magnesium that crosses the blood-brain barrier) to the mix.

      I feel I have made these additional gains: I no longer feel brittle psychologically; my thought-speech coordination has improved; I now walk with a normal gait and arm swing, without my left hand tightening into a grip, no longer being self-conscious in this regard; my dexterity is good; and my balance is good.  My carbidopa/levodopa prescription (25-100, 2 tablets by mouth, 3 times a day) has not changed.

      Hope this is helpful to someone.

    • #24496
      LARRY GLASS
      Participant

      What I just said about cane sugar might be confusing.  To clarify, I became super-sensitive to cane sugar as a result of taking dibencozide B12.

      • #24497
        Barry Block
        Participant

        I too have the LRRK2 G2019S variant. What brand and dose of dibenconzide do you take. Is it chewable or sublingual?

    • #24501
      LARRY GLASS
      Participant

      I use Country Life brand, Methyl B12 3000 mcg lozenges (1/2 totally dissolved sublingual, and 1/2 swallowed before breakfast) and Active B12 Dibencozide 3000 mcg lozenges (1/2 totally dissolved sublingual before dinner, and 1/2 totally dissolved sublingual before bedtime with 1/2 swallowed).

      • #24502
        Barry Block
        Participant

        Thanks for the info. Please explain what 1/2 means as I am not familiar with that terminology. Does it mean one half dose or one of two daily doses?

    • #24504
      LARRY GLASS
      Participant

      I cut the pills in half with a pill cutter from CVS.  Incidentally, the serving info on each of the B12 bottles says that 3000 mcg is 125,000% of the recommended “daily value.”  The dosage amounts and intake variations and schedule kind of evolved.  Taking the B12’s sublingually gets the B12 directly into the blood circulation, avoiding the digestive tract, microbiome, and other perils.  On the other hand, swallowing the rest of the B12’s may have a beneficial impact on the microbiome, which can be manipulated. I thought I would try to have it both ways.

      If I were you, starting from scratch, I would begin with the dibencozide–like I did–to address the Parkinson’s-related LRRK2-G2019S  neurotoxic protein.  See what results you get.  Then, later on, work in the other B12.  I should add that when I started the Methyl B12, I experienced the same kind of nightmares I had initially had with the dibencozide, with about the same duration and outcome.  I suspect that the nightmares evidence the cleaning out of some really bad stuff and/or putting the brakes on a toxic process.

      • #24505
        Wesley
        Participant

        Thanks for the information Larry, great thread!

    • #24506
      LARRY GLASS
      Participant

      The adenosylcobalamin (dibencozide b12) study was published in Cell Research (2019): “Vitamin B12 Modulates Parkinson’s Disease LRRK2 Kinase Activity Through Allosteric Regulation and Confers Neuroprotection.”  The best explanatory article about the study that I have read  was published in The Science of Parkinson’s (3/22/19):  “AdoCbl + LRRK2 = modulation.”  You might want to check the literature on methylcobalamin, omega 3 fatty acid vs. omega 6 fatty acid, and Magtein (magnesium L-threonate), with regard to Parkinson’s and otherwise.  Good luck!

    • #24516
      LARRY GLASS
      Participant

      Very kind of you to provide those links!

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