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Injecting Methylcobalamin

Discussion in 'Other: Methylation; B12; Glutathione; GcMAF' started by Little Bluestem, Nov 7, 2017.

  1. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    I just learned that my doctor prescribe 1mg methylcobalamin once/month for me.

    What dose (in mg) do you use? How often do you inject it?
     
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  2. MErmaid

    MErmaid Guest

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    I inject myself weekly, 1 mg, of cyanocobalamin.

    Last year I received a shot in the doctors office and felt no benefit. This year, after adding another Rx to my ME cocktail, I tried again (same brand, same strength). This time I felt slightly better (better sleep, improved mood, and a bit more energy). So I went online and ordered the exact product my doctor had. I would estimate that the weekly shot gains me about a 5% improvement overall.

    I don’t know why your doctor chose methyl over cyano, or why just once monthly? But I hope it helps you feel better (because that’s what really matters)
     
  3. Diwi9

    Diwi9 Senior Member (Voting Rights)

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    Subcutaneous injection of 5,000 mcg every three days of methylcobalamin.
     
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  4. MsUnderstood

    MsUnderstood Senior Member (Voting Rights)

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    @Little Bluestem The 1mg once/month dose recommended by your physician is quite conservative. My first experience with B12 injections was only a few years post-onset. These were 1 ml injected weekly at my physician's office. Initially they gave me "pep". However, my experience has always been that anything that leads to increased energy without correcting the underlying medical problem encourages me to do more than I can sustain -- hence, a crash.

    The second time the dose was 1 ml once/month, injected at my local pharmacy. Had I perceived benefits, I would have learned to inject myself, as @MErmaid does. However, this second attempt with B12 was shortly before a long-term crash which left me bed bound and unable to visit the pharmacy.

    Apparently, high-dose B12 has been used for ME since the 1950's, although it has only recently been hypothesized that it may be helpful because it is a nitric oxide scavenger. According to Dr. Martin Pall, nitric oxide augments oxidative pathways. Oxidative pathways are known to be augmented in ME ( http://me-pedia.org/wiki/Martin_Pall ), and oxidative damage is increased in ME . According to Doctor Pall, the same process may be occuring in multiple chemical sensitivities. High-dose B12 is also used for other chronic conditions that affect the central nervous system (CNS).

    Some clinicians prefer to use Hydroxy B12, and some Methyl B12. Both penetrate into the CNS, which is considered critical for effectiveness. Doctor Pall's protocol uses sublingual B12, but this may not be effective. Most ME practitioners recommend injected B12.

    @MErmaid , according to my local ME specialist, the Cyanocobolamin you are using (the type commonly given to elderly patients with low B12 levels) should not be used in high doses. She claims it does not increase energy and cognitive function unless there is a B12 deficiency, and also that most ME patients do not have a B12 deficiency. Hence, B12 injections for ME patients are not being used to correct a deficiency. I'm glad to hear it's working for you.

    Rather, the intent of high-dose B12 for ME patients is to decrease nitric oxide synthesis and oxidation in the brain. Methyl and Hydroxy B12 can improve symtoms of ME regardless of serum levels (which will become high as treatment continues).

    The dose recommended by this specialist is 10mg/ml Methyl or Hydroxy B12 X 1 ml given by intramuscular injection as often as 2 - 3 times weekly. Based on this dosing schedule, patients are advised to wait for a month before assessing the effectiveness. So it seems in your case, @Little Bluestem , it may be several months before you'd know if the B12 injections are helpful.

    For those with allergies or chemical sensitivities, it is recommended to request preservative-free B12. I wasn't aware of this during my first attempt with B12 injections, which may explain at least some of the problems I perceived. For my second trial, I did request preservative-free B12, and although I didn't experience benefits, I also had no side effects. However, one must be aware that un-preserved B12 has a shorter shelf life (and it must be refrigerated).

    I hope this is helpful. I'm certainly not an expert, but thought I'd try my first "semi-scientific" post. Perhaps others more knowledgeable can chime in.
     
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  5. MErmaid

    MErmaid Guest

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    My ME specialist has been using cyanocobalamin for many years, but offers it only to patients who he feels might respond favorably; and then out of that group only the ones who derive a benefit continue with the protocol. He has 30 years of experience, and tracks my progress monthly. I personally would not trust a doctor that makes a blanket statement about how to treat or not treat ME patients. I am an individual who has worked dilligently with my doctor to design my customized treatment plan. As I mentioned, I derived a 5% benefit, which is minor. But as my treatment plan evolves over time, each incremental improvement, whether big or small, adds up to a sum total. This is the approach I take to wellness, but realize we all have to find our own path.:emoji_relaxed::emoji_pill::emoji_syringe:
     
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  6. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    My doctor's prescription is indeed conservative. I am currently using 3.75 mg transdermally each day. Animal experiments with the Australian product, which I do not use, found about 80% absorption. What I am using probably does not do quite as well. I would guess I am getting 2.5 - 3 mg/day. To cut back to 1 mg/month would be a huge setback.

    The injectable comes in single dose bottles that cost over $10. My current regimen is costing 0.50/dose. However, it is a real bother. I would like to be able to inject if I can get a reasonable prescription from my doctor and can afford it. It is to come from a compounding pharmacy, so I assume it is preservative free. But the compounding pharmacy does not take my insurance.
     
  7. MErmaid

    MErmaid Guest

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    I purchase Cyanocobalamine online; it’s very affordable. I pay about $1 per injection (plus the small cost for the disposable syringe needle). I get 10 injections per vial.

    Even if you spend a lot at the compounding pharmacy, you may still be allergic to the seal, which you may come in contact with as soon as the syringe needle pokes it. There is another device that helps with this issue.

    I hope it helps you.
     
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  8. Webdog

    Webdog Senior Member (Voting Rights)

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    The Open Medicine Foundation B12 study a couple years ago was 15mg methylcobalamin injected every other day and 15mg L-methylfolate (MethylPro). As a trial participant, I can't say I saw any benefit.
    After the trial, I switched to sublingual methyl B12 for a while (5mg). Eventually, I stopped the B12/methylfolate completely, in part to help clear up some acne I had developed.

    Too Much Vitamin B12 Linked to Acne
    https://www.livescience.com/51338-vitamin-b12-linked-acne-bacteria.html

    ETA: I should add that I'm heterozygous A1298C and C677T MTHFR.
     
    Last edited: Nov 12, 2017
  9. Inara

    Inara Senior Member (Voting Rights)

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    Cyanocobalamin, as I have learned, is the synthetic form of B12, i.e. its molecular formula deviates from that of Adenosyl-, Methyl- and Hydroxocobalamin, which are the forms in our body. Yet, it is said the body can change cyanocobalamin into the working molecule.

    Hydroxocob. is the form we take in with food. This is then changed to Adenosyl- or Methylcobalamin, as needed by the body.

    It is said Adenosylcobalamin is the form used in energy metabolism (i.e. production of ATP) and Methylcobalamin is used everywhere where methylation is needed.

    People reported about bad acne with cyanocobalamin. Personally, I always prefer molecules that occurr naturally in the human body.

    My doctor told me injecting 1mg of B12 daily is no problem at all. I stretched that to ca. 2-3 times per week. I use Adenosyl-, Methyl- and Hydroxocobalamin. Of course, I take other B vitamins as well. I inject it subcutaneously.

    I believe, as always, one has to find his way individually. Best wishes!
     
  10. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    I've never injected B12 but I do supplement with high dose B12 orally, alternating between methylcobalamin and adenosylcobalamin. I found that various things got worse when I first started supplementing - my persistent eczema, my already severe mouth ulcers, and instead of having one or two spots I developed quite severe acne. However, I persisted, and over a few weeks, first my eczema virtually disappeared, then the spots got better and vanished, and finally my mouth ulcers improved. Sadly, the mouth ulcers never disappeared entirely and the B12 has only caused a slight improvement in those. It took about three months for this deterioration and then improvement to happen.

    I'd had eczema on my hands for most of the last 50 years. Since taking high dose B12 it has 98% vanished. The skin on my face is now less spotty than it has been since before puberty.
     
  11. Gingergrrl

    Gingergrrl Senior Member (Voting Rights)

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    In case this is helpful for anyone, I cannot tolerate Methyl B-12 or M-Folate in any dose (and my B-12 was super low on blood tests plus I was anemic). I finally found a sublingual/lozenge form of Hydroxo B-12/ Folinic Acid (by "Seeking Health") and it works great. I tolerate it with no side effects and it raised my B-12 and Folate on blood test and I am no longer anemic.
     
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  12. alicec

    alicec Established Member (Voting Rights)

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    There is a significant amount of the hydroxy form in foods, probably as the result of breakdown of the active forms from exposure to light, but there is about as much in the adenosyl form. Some foods have significant amounts of the methyl form. See this paper.

    In the body adenosyl is the predominant form in tissues and methyl is the predominant form in blood.

    AdenosylB12 is the cofactor for methylmalonyl CoA mutase which converts breakdown products of some amino acids, odd chain fatty acids and cholesterol into succinylCoA, which in turn feeds into the Kreb's cycle for energy production.

    MethylB12 is the cofactor for methionine synthase which produces methionine from homocysteine; this in turn produces S-adenosylmethionine, the dominant methyl donor for hundreds of metabolic reactions, as well as feeding into the transsulfuration pathway which leads to synthesis of the master antioxidant glutathione.
     
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  13. MErmaid

    MErmaid Guest

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    That makes sense. I also take NAC which is the precursor to Glutathione.
     
  14. MErmaid

    MErmaid Guest

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    It’s excellent you figured out a way to kick anemia.
     
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  15. MErmaid

    MErmaid Guest

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    That’s a nice benefit!
     
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  16. Squeezy

    Squeezy Senior Member (Voting Rights)

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    @Arnie Pye Adenosylcobalamin is entirety new to me. How much do you take of that, and the methylcobalamin?

    Thanks.
     
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  17. Bluesky

    Bluesky Established Member (Voting Rights)

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    there is a really good twitter account @b12unme which has a link to the facebook page where you can find support and information in docuents research etc.

    the site b12deficiency.info
    is very useful and full of links for uk to nice guidelines. testing that needs to be done.

    blood tests are difficult as the problem with b12 def can be happening long before it shows in the blood tests.

    also we have available and non available b12 in the blood.

    the key for newbies is not to start supplementing before getting the right full testing as you won't get the correct dx and risk not getting the right treatment.

    @b12info is another useful twitter account which give science and is linked to the well evidenced b12 info site.

    i found it very useful to show the nice guidelines to my gp. which gave him confidence to prescribe.
     
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  18. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I tried high dosage injections with Hydroxocobalamin some years back to no effect, but am considering having another go.

    Does anyone here combine B12 with folic acid as in this study? Worth a try?
    Response to Vitamin B12 and Folic Acid in Myalgic Encephalomyelitis and Fibromyalgia

    Edit to add conclusion of the study (which btw is small):
    Conclusions
    Frequent injections of high-concentrated vitamin B12, combined with an individual daily dose of oral folic acid, may provide blood saturations high enough to be a remedy for good and safe relief in a subgroup of patients with ME/FM. Moreover, we suspect a counteracting interference between B12/folic acid and certain opioid analgesics and other drugs which have to be demethylated as part of their metabolism. Furthermore, it is important to be alert on co-existing thyroid dysfunction. These issues should be considered when controlled trials for ME and fibromyalgia are to be designed.
     
    Last edited: Jan 9, 2018
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  19. erin

    erin Senior Member (Voting Rights)

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    I used to get 1ml cyanocobalamine injections. This was before I know anything about supplementing B12 for ME.

    I was feeling poorly for a long time, and I got so bad I passed out at home in the middle of the night.I was feeling so dizzy and nauseous I thought I had food poisoning. Dizzines was unbearable. I was alone at the time, I had to crawl to go to the toilet. This was so bad I asked for help at 3 a.m. from my neighbours. They took me to A&E they couldn't find any poisoning in my blood but I was anemic. They given me some saline IV and suggested I should come back for a proper blood tests the next day. I had the tests and I was very B12 deficient. I was given the above injection, 3 days on a row, then every other day, then twice a week, then once a week and then every month.

    Monthly injections continued for a year, then every 3 months. I had intrinsic factor, but somehow my body was not absorbing B12 normally. I had the regular B12 tests and with all the injections my blood showed bordering B12. Bordering B12 is not good for me, I need more.

    I also started to use sublingual B12 which helped. Then my latest blood test showed a little over the border and I missed an injection, still over. Then I now feel I don't need them. I don't know what has changed? I changed one thing I am now totally and completely gluten (a year) and dairy (6 months) free and I have lost weight (one stone). Plus it is now over a year that I'm on thyroid supplement. I have no idea if diet and thyroid med have anything to do with not needing B12. My next blood test is due in March. I'm still not healthy and I have usual ME symptoms.
     
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  20. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    @Bluesky, thank-you for the information. I am not on Twitter or Facebook, but will check out the website.

    I am not a newbie. I started with sublingual, but it was hard on my teeth. I switched to transdermal. I definitely makes me feel better. I am even better if I do it twice a day, but that is so time-consuming and messy that it rarely happens. The injections would be a lot quicker and simpler. When the PA was showing me how to do the injections, he was using a multi-dose bottle. Then I got this strange prescription. Even the pharmacy thought it was odd.

    I do and I think most people do. Taking either without the other can be dangerous by depleting the other and causing a deficiency.
     
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