B12 injections are the bee's knees... wish I would have tried them 15 years ago

Mary

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Do you have any theories about why drops worked for you, when injections and sublinguals didn't?
I do. I think with the injections, I just was not getting enough B12. 5000 mcg 3 x a week. With the sublingual liquid, I'm taking 10000 mcg a day. I think if I had done injections daily, it might have helped.

And with the sublinguals, I don't think they were as well absorbed as the liquid. Also you have let them dissolve very slowly in your mouth and I didn't always do that. But with liquid, I seem to have much better absorption.

I have to take a LOT of B12 to have any of it useable it seems. I'm sure it has to do with ME/CFS though I don't know the mechanism involved. Back when I was healthy, if I took a B12 supplement, I felt a boost the same day.
 

Mary

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The only mail-order methylB12 ampoules I've found are from VitaminQuick.com, and they appear to be sourced from China, without many reviews online. I would love to try self-injecting methylB12 if I could find ampoules from a reliable source. Did you buy yours online or from a compounding pharmacy?
It was a prescription my doctor wrote which I had filled at McGuff Compounding Pharmacy in Santa Ana, California - http://www.mcguffpharmacy.com/

I varied it too, trying hydroxocobalamin as well as methylcobalamin, and no noticed no difference with either one. But again, I wondered years later if perhaps I just was not getting enough though of course it would have been enough for a normal healthy person.
 
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No, it's versandapo.de:... The UK company that sells syringes, insulin needles, sharps bins and medical wipes very cheaply is medisave.co.uk
Just a note for people ordering online from the USA--
I tried versandapo.de first, as it is cheapest, but when I entered my address the website gave me an error message saying they wouldn't ship to the US. Fortunately goldpharma.cn worked, although I had to puzzle out a few things. I looked for an online store willing to ship needles (other than insulin needles) to the US, but I couldn't find any. My doctor wrote a needle prescription for me, and I bought a box of 100 25G 1-inch needles from CVS for about $14. They're a little large, though, so I might try insulin needles after all. Or Costco... they said they have "B12 needles" for $0.25 each.
 

taniaaust1

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When I do hydroxocobalamin injections, I find for me they wear off in 4-5 days but this is different for everyone who finds they help. Some use them daily.

So that's my story. If anyone has any idea why injected B12 would work on my brain and nervous system despite having normal blood tests, I'm all ears.
B12 testing which you had isnt great as it only shows B12 outside of the cells not the levels inside of them (intracellular) where it really matters. So someone may have B12 issues which do not show up from the normal blood B12 testing.



They always have used by date on the ampule box (I cant remember now if they were on the individual ampules too). I once asked a doctor if they could be used after the use by date as I got a huge lot at once and then didn't use them all, and was told that it was okay to use them after the expiry date but she said the benefit may be weaker

[QUOTE="Hip, post: 1004358, member: 249"] But just to give an example, one injectable hydroxocobalamin product containing 200 x 1000 μg ampoules is priced at £69. Shipping to the UK is £6 + 10% of the product price (ie, another £6.90 in this case).

I think there would be more concern about shelf life with methylcobalamin ampoules, since methylcobalamin especially when dissolved in water is very sensitive to light, and breaks down under light exposure. Whereas hydroxocobalamin does not suffer from this problem.[/QUOTE]

oh no.. do not leave hydroxocoblamin out in the light either!! I learnt that from a very bad experience I had when I used an ampule which had been left out in the light for a while. I got an extremely bad reaction from that one. (It was like I'd taken the drug acid.. my face went to actual sores over it). Ive since read that they should NOT be be left out in the light.
 
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taniaaust1

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@shoponl - are you in the U.S.? I used to order mine on-line - pretty cheap. I used B-D 3 ml 25G1 - similar to this: https://www.medonthego.com/Box-of-B...le-25G-58-Inch-BD-309570-Box100_p_114931.html

This was several years ago, maybe there are more regulations now?

I did the shots intramuscularly - into my thigh, so insulin needles wouldn't have worked.
I did both intermuscular injections and the other way too and found it didnt make any difference which way I was doing it. Due to that I ended up going to using the insulin injections (as they hurt less!)
 

taniaaust1

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Just a note for people ordering online from the USA--
I tried versandapo.de first, as it is cheapest, but when I entered my address the website gave me an error message saying they wouldn't ship to the US. Fortunately goldpharma.cn worked, although I had to puzzle out a few things. I looked for an online store willing to ship needles (other than insulin needles) to the US, but I couldn't find any. My doctor wrote a needle prescription for me, and I bought a box of 100 25G 1-inch needles from CVS for about $14. They're a little large, though, so I might try insulin needles after all. Or Costco... they said they have "B12 needles" for $0.25 each.
I dont know how things work where you are but I ended up cause it was FREE .. getting my needles through a place which did needle exchanges for drug addicts. It turned out they also could help other members of the public with needle exchanges. eg they give out a safety container for disposed needles to go into.. and one they give out whatever needles one wants. (I got boxes of all kinds of different needles, free alcohol swabs etc too).
 
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I'm searching for recent studies exploring the transport of B12 into the brain and CSF/CNS; just parking these here for future reference. Presumably any problems with these genes would be quite severe and show themselves in childhood, so they're unlikely to be a factor for adult-onset fatigue. My 23andme report only shows one AMN SNP (wildtype) and two proprietary insertions.

https://www.ncbi.nlm.nih.gov/pubmed/18181028
Amnionless (AMN) mutations in Imerslund-Gräsbeck syndrome may be associated with disturbed vitamin B12 transport into the CNS.
"...compound heterozygous for a missense and a nonsense mutation in the amnionless (AMN) protein gene, was noted to have a high daily cobalamin (Cbl) requirement for neuropsychiatric, but not for systemic metabolic and haematological, remission. Measurements of CSF Cbl revealed evidence that the transport of Cbl into the central nervous system was impaired... It is possible that an active Cbl transport mechanism at the BBB exists, and that the amnionless (AMN) protein may be part of this mechanism"

http://stary.lf2.cuni.cz/projekty/unepsa/ep2000/1/193.htm
IMERSLUND-GRÄSBECK SYNDROME; EVIDENCE FOR A FUNCTIONAL BLOOD-BRAIN BARRIER FOR VITAMIN B12
"Imerslund-Grasbeck syndrome (IGS) is a group of rare autosomal recessive diseases... The CNS B12 dynamics of children with this syndrome are poorly understood. A patient with IGS provided an opportunity to evaluate ... the B12 blood-brain gradient.Vitamin B12 transport into the CNS is probably mediated by an active, receptor-dependent mechanism. "


https://www.ncbi.nlm.nih.gov/pubmed/23430977
The transcobalamin receptor knockout mouse: a model for vitamin B12 deficiency in the central nervous system.
"severe cobalamin depletion in the central nervous system (CNS) after birth (P<0.01) indicates that TCblR is the only receptor responsible for Cbl uptake in the CNS... The CNS pathology of Cbl deficiency seen in humans may not manifest in this mouse model."
TCblR = CD320






 
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Are you still doing great with B12 ?
I am! I just self-injected 1mg hydrocobalamin this morning. So far I've had a half-dozen shots at the doctor's office (5mg methylcobalamin, $35), and ten shots self-injected (1mg hydrocobalamin, $1.50).

My energy isn't constant, but I'm able to easily exercise every day, and even jog until my leg muscles tire. I have much more stamina and clear-headedness, and I don't find myself fighting to stay awake at odd moments. I can handle more noise and activity without feeling depleted (I can almost shop comfortably at Walmart now. Ha.) Before, if I tried to exercise, my brain would shut down and try to send me to sleep; I never was able to exercise to the point of my leg muscles feeling tired or my lungs aching. It's hard to explain-- but, for example, if I went on a walk with my family, I'd soon feel an almost-irresistible urge to curl up on the edge of the trail and fall asleep. I'd have to fight to stay awake and keep up. And I'd get weirdly out of breath. Or I would try to make myself exercise for 20 minutes, but then would have to spend a half-hour passed out on the couch. I managed, but life was more difficult than it should have been. I was dependent on a large number of supplements just to feel okay. I also had tingly feet and hands that would get better and worse throughout the day. And memory was iffy-- If I wanted to retrieve something, it would often stay just out of reach, on the tip of my tongue, behind a veil. I became adept at immediately substituting words as I talked, which is okay but tiring in itself. Scents were very strong-- I would get a headache from strong perfume in the room. I looked into ME/CFS, MS, narcolepsy, Pall's NO/ONOO, Buteyko breathing, genetics, thyroid, many elimination diets (gluten, casein, oxalate, AIP, etc). Many things helped a little (B12 subliguals, Metafolin, potassium, calcium, Allithiamine, cinnamon, minerals, Naturethroid, increasing CO2) . I thought my B12 was fine because my blood markers were fine (not just serum B12, but homocysteine, MMA, MCV, iron, etc.). So glad I kept reading and experimenting after all these years.

I still have some tingling, still have some breathlessness and a little fatigue at odd times, but everything is much better. I'm starting to recognize the signs for needing a B12 shot-- I feel a little depressed, a little tired and overwhelmed, get breathless climbing stairs, feel a little foggy-brained.

Probably more info than you wanted, but I'm hoping someday someone will find this post, and figure out their problem in 15 minutes instead of 15 years. :)

*edit: In case it helps someone else, one clue may have been my bilirubin level. When it first became elevated, my dr tested me for hepatitis, which was negative. She then told me I had Gilbert's (Zee-beahr's) syndrome. However-- my bilirubin didn't stay high all the time. It would descend to the normal ranges sometimes-- when I was taking a lot of folate, I think. On my last blood test, my bilirubin was normal. I had to change my makeup shade because now I'm more pink and less yellow (i.e. I'm back to cool instead of warm shades).
 
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Mel9

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I do. I think with the injections, I just was not getting enough B12. 5000 mcg 3 x a week. With the sublingual liquid, I'm taking 10000 mcg a day. I think if I had done injections daily, it might have helped.

And with the sublinguals, I don't think they were as well absorbed as the liquid. Also you have let them dissolve very slowly in your mouth and I didn't always do that. But with liquid, I seem to have much better absorption.

I have to take a LOT of B12 to have any of it useable it seems. I'm sure it has to do with ME/CFS though I don't know the mechanism involved. Back when I was healthy, if I took a B12 supplement, I felt a boost the same day.
I take B12 liquid sublingual too. It’s Very effective and easy to apply, although you do need 20 minutes of quiet, no talking.
 

Mary

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I take B12 liquid sublingual too. It’s Very effective and easy to apply, although you do need 20 minutes of quiet, no talking.
How interesting! I never realized the need for 20 minutes of quiet as the only one I "talk" to in the morning is my cat ;) Or, rather, she talks to me letting me know in no uncertain terms what she wants to eat! :cat:
 
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5184828/

"Neurologic symptoms as the only manifestation of B12 deficiency in a young patient with normal hematocrit, MCV, peripheral blood smear and homocysteine levels"

"...neurologic symptoms may be the sole manifestation of B12 deficiency, not only in the absence of anemia or megaloblastic changes but furthermore in the absence of hypersegmentated neutrophils or macroovalocytes in peripheral blood smear or with normal homocysteine levels. Patients with neurologic symptoms must be screened for B12 deficiency even in cases where no other indicative laboratory finding exists"

The man in this case study had a below-range serum B12 level. Elsewhere it is noted that if one is taking B12 supplements, their serum B12 could be falsely elevated... which would leave no obvious bloodwork indicator for their B12 deficiency (unless... possibly holoTC?). In this case, the best course would be to simply try B12 shots and watch for improvement-- which is the course suggested by the Dutch site, https://stichtingb12tekort.nl/weten...english/misconceptions-about-a-b12-deficiency .
 
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Good intuition...


I also have MTR/MTRR variations, but since my homocysteine is normal, I'm not sure those are causing the problem. There must be something else.
I've since changed up my diet a lot. I take bee pollen daily, magnesium injections, and I eat organic beef liver once a week. Once I started doing that, my ferritin level shot up from 40 to 70. I'm working under the theory that I had some bio-available copper deficiency, so my body lacked the ceruloplasmin to utilize the iron. Without ceruloplasmin, any iron that is absorbed dietarily (or in my case from IVs) just ends up in random tissue and doesn't go where it's supposed to. So once I started taking care of copper, my ferritin shot up, likely because the tissues started dumping iron into serum.

I believe now that people with chronic iron deficiency anemia who get iron IVs but see such low improvement are probably lacking copper, and likely magnesium as well.

I started taking borax recently to help increase boron levels, but it wreaked havoc on my bowels. So I'm going to opt for a boron supplement instead. I've been trying to restore my bones and teeth after a long stint of prednisone. Calcium and mag supplementation alone don't seem to be working, so the missing factor is likely boron.