B12 for probably non-ME/CFS symptoms

[garyfritz]

Interesting. Might have to look for some of that Damiana.

I intend to try increased dosages of the mB12 once I get my vial, but I'll have to convince my doctor to go along with it for re-supply.

Freddd, I'm losing track of your dosages. Is the 4.8mg TID oral (ENZY?) or injected?

 

[Freddd]

Interesting. Might have to look for some of that Damiana.

I intend to try increased dosages of the mB12 once I get my vial, but I'll have to convince my doctor to go along with it for re-supply.

Freddd, I'm losing track of your dosages. Is the 4.8mg TID oral (ENZY?) or injected?

4.8mg TID of Metafolin oral.

 

[garyfritz]

Ohh, right. Of course you wouldn't inject methylfolate, duh. I was thinking mB12.

I've been taking my Solgar methylfolate sublingually, along with my CL mB12. Not sure if that's necessary but I figured it couldn't hurt.

 

[Freddd]

Interesting. Might have to look for some of that Damiana.

?

We prepare it at home. Besides Daminana soaked in brandy for several weeks with vanilla beans, and then a water soak and then both soaks combined with honey and aged. I like it best heavy on the vanilla There are commercial brands that can be used instead of tequila in margaritas. It's a pretty good "nerve tonic". For me and my partner it seems to reduce neurological pain and make everything feel better for a few hours. There are also many herbal recipes for teas and all sorts of concoctions with Daminana. It has been in use in the Americas for a long time.

Another interesting botanical is the Egyptian Blue Lilly. We find it best soaked in Sweet red wine for two weeks. Helps it not be bitter. Teas are bitter but can be ready quickly. It was used from Egyptian time through the Roman empire as a wine additive. In tomb paintings people were pictured with a blue lotus on their heads and a big smile. Again, very pleasant. It also contains substances similar to Viagra but is effective in enhancing things for both male and female. With blue lotus both root, flowers and leaves are all used. Some vendors offer a specialized product, stamens from the flowers, very expensive, like saffron. I don't know what the stamen are supposed to do. Might not be bitter perhaps..

 

[garyfritz]

Update: I got my injection kit.

My symptoms (RLS, muscular edginess, 1am-4am twitching and agitation) tend to hit worst in the afternoon/evening/night, so I normally take my B12 in the afternoon/evening. I've been taking 4*5mg of CL mB12, plus usually another one (or sometimes two) when I wake in the middle of the night with the twitches.

So I tried the 0.1mL = 1mg injection (IM) at 6pm on Saturday. I didn't feel a thing. Nothing. But this stuff definitely works, unlike the shots I got at the MD's office. I didn't take any oral B12 all day or night, and I slept through the night (maybe a wakeup or two, I forget) without any nighttime problems. That's the first time I've gone 24 hours with no oral B12 in a year. Without the shot I would have been crawling the walls by 1am.

I think it only lasted about 12 hours. By 6am I was awake with some edginess and borderline RLS. Tried going without oral B12 that day, and that didn't work. Had to take some CL before bed.

So it works, but I don't think it's going to help much at my doctor's prescribed levels. She wants me to take 0.1 mL 2x/week, at least for now. "Start low, go slow" and all that. If it only lasts 12 hours, that's not much help.

I don't know if a larger dose would last longer, or if it would do "more good" (maybe make me feel noticeably better, maybe actually do some healing?) for the same 12 hours, or what. I will follow the MD's recommendation for a few weeks, then once I've characterized it better, I'll tell her we need to boost it.

@sueami, @whodathunkit, if I'm not being too nosy, how much / how often do you inject? How long does it last for you? Whoda, I remember you said you injected 5mg/day for months. Maybe I need to get up to that level too.

What would you say are the advantages of the injection over oral administration? The low dose I've tried so far is a passable replacement for 4-5 CL B12, but I wouldn't say it's any better. Sucking on a few lozenges every afternoon is a lot simpler than juggling vials, syringes, alcohol, etc, especially when I travel on business, which I do often. The shots are probably better for oral health. Maybe larger & more frequent doses would do more obvious good that the oral B12 doesn't?

I'll continue with my CL mB12 for now, certainly in between injections. Maybe if we ramp up the injections, I'll be able to reduce or even eliminate the CL mB12. I am wondering if I should continue with the adenosylB12, methlfolate, LCF? I never noticed ANY change while starting them or ramping them up. I've been off them for several days (kind of spaced it off when I was paying attention to the shot) and I haven't noticed any change from that either. I'm not convinced they're doing ANYthing for me. mB12 seems crucial but the others, not so much.

 

[sueami]

Hi Gary,
I was prescribed 1mg 3x week but I take it every other day. I took a shot two days in a row just as I was leaving for vacation without negative effects (and it probably got me through travel and jetlag without a crash) and I'm sure I could tolerate a shot every day.

I'm on the fence about more shots, as five 1 mg B12 Infusion tabs likely deliver the same or more available mb12 for a fraction of the cost (85 cents vs. $6.50 per shot (including shipping) from the pharmacy in Arizona my physician uses. I keep meaning to ask @whodathunkit what pharmacy she gets her shots from to see if they would ship to me. I haven't been able to find a cheaper source here in Colorado.)

I will probably ask my physician for another 20 shots and up my dosage to daily to see how much of a difference it makes. I felt a huge brightening/rising energy in the first few days after I began the shots, then some up-and-down days, then I stabilized at a new, somewhat better norm (but disappointingly not "normal" energy), then I went on vacation and crashed five days into it with a new, deeper muscular exhaustion/tension from mild-to-moderate physical activity. I have recovered a bit from that but not fully and am working on just resting as much as I can and tending to my mental and emotional health while I wait to see if I regain the lost ground or not.

Freddd takes 30 mg a day so 1 mg may be nowhere near what you need to control your symptoms. I believe he started off his whole adventure in methylation with just B12 supplementation and saw much initial improvement from it, so that seems a reasonable path to take, if you so choose. But if you are not experiencing side effects of the other methylation co-factors, I would be inclined to continue taking them, at least during your experiments with subQ b12 and any increase in b12 dosage you try, in case you find some synergistic effects with greater absorption of b12.

I've been adding in sublingual b12 on the days I'm doing shots, just to see if higher dosages are better. It seems like that would be a good strategy for you as well, to test out your tolerance to higher b12 levels.

If I were you, I'd try the Enzymatic Therapy b 12 infusion tabs instead of the Country Life. Freddd was indicating, if I read his posts correctly, that he fell into a b12 deficit when he continued taking CL after some sort of reformulation, and he feels they deliver a fraction of the b12 that the Enzymatic Therapy brand does.

I think he's right, based on my experiences with the two. The CL tab definitely dissolves much faster than the ET, and I don't feel like I'm getting more out of it than a couple of ET tabs, but my symptoms are not as immediately responsive to B12 as yours seem to be, so I'm not the best judge, perhaps.

I am noticing a racy/wired feeling right now, after just taking a b12 shot, that I don't get when I take a full 5mg country life or two 1mg Enzymatic Therapy tabs, so I am probably getting more out of these shots than I realize.

I think a 5 mg injection, if you were ready for that much, is definitely worth the cost and (however mild) injection stress. I'm on the fence with the 1mg shots.

fwiw,
Sue

 

[garyfritz]

$6.50 per 0.1mL shot!! You need a new pharmacy. My MD ordered from http://www.mcguffpharmacy.com/ and my delivered cost was about $56 for a 10mL vial = 100mg. And that included 20 sets of syringe, 18ga extraction needle, and 28ga injection needle. So that would be just over $2.50 per shot for 20 5mg shots, probably not a lot more than $56 if you wanted 100 * 1mg shots. I'm sure it would work out to less than $1 per 1mg shot including syringes &etc.

I tried the ET 1mg tabs and I wasn't impressed. I felt like I had a mouthful of sugar pills all day long, and the results were no better than CL. There's no way I would put up with that long-term. Yes the CL lozenges dissolve quickly, but they seem to work well for me.

My symptoms do seem to respond very quickly. If I wake up in the night with the heebie-jeebies, a shot of Readisorb or a 5mg CL will settle me within 2-3 minutes. It's dramatic.

Can you tell when your 1mg shot wears off? How long does it last?

I agree I should try higher doses. I'm just doing it slowly so I don't freak out my doc. Surprisingly I have almost zero injection stress, even though I tend not to like needles. The 28ga needle is so tiny that it's just a very tiny pinprick and then I don't feel anything else. No biggie.

 

[sueami]

Thank you for that link, Gary, I'm going to forward it to my physician. I can get behind the 1mg shots much easier at that price!

I can't say for sure when it wears off. I'm finally starting a health journal and trying to write in it several times a day (noting what i'm eating, taking as supplements, subjective symptoms, dreams, even spontaneous thoughts that might seem relevant to healing) to get a clearer picture of what might be helping or hurting me. The problem with me is that I'm impatient and impuslive and tend to dabble in new supplements or different dosages too many at a time. I'm hoping the discipline of journaling will rein that impulse in a bit.

If I had to hazard a guess, I'd say the mb12 shots are good for a day for me, maybe even only the first two thirds of a day. It's hard for me to tease out why I might suffer a sudden wave of exhaustion -- was it something I ate, a mid-afternoon cyclic tiredness, a reaction to doing a bit of gardening, too much time spent on the computer. So many variables, so little patience.

 

[garyfritz]

So many variables, so little patience.

LOL! Boy do I hear that!!

 

[Freddd]

I would like to make a couple of remarks on B12 injections. The injected MeCbl, like other forms are excreted very rapidly injection. IM injection takes 30 minutes to absorb essentially 100%. and the immediate serum halflife is stated by research to be 20-50 minutes to start with, An SC injection, not into the muscle and done with an insulin syringe with a 30 or 31 gauge needle, takes 5-36 hours to absorb fully. So the IM injection has a higher serum level the first hour or 3 and the SC all the rest of the time.

The Japanese study of intrathecal injection of 2.5mg MeCbl into the CSF for diabetic neuropathy showed that retention time varied from less than 3 months to over 4 years. With CFS/FMS and the rest of the neurological diseases with low CSF cobalamin there can be either a problem transporting cobalamin into the CSF or in retaining it or both.

So for instance, I continued to have CNS damage increasing while much of my body was healing on a few sublingual mgs each day, different triage layers. I take 3 x 10mg SC injections daily. They have enough overlap that they keep my serum level relatively even 24/7.

So, what any body needs for neurological healing or body healing is a matter of trials and can vary tremendously.

 

[whodathunkit]

Yep. So many niggling variables, all requiring patience, and I only got one nerve left anyway.

Anywhoo: @garyfritz, I'm currently using about 2.5mg/day of mB12. 10,000mcg/day of adB12. Plus I think the boost I've given myself of adB12 has made as much difference lately as anything I've done.

I don't plan to ever be without at least 1mg/day of injectable mB12, unless I absolutely can't help it. Same for adB12, although the amount of that could go down. The B12's have done me way too much good, and injectable is vastly superior to sublingual.

I can't really tell you how long a mB12 shot lasts because I always supplemented with sublingual later in the day when I was still prone to start-up reactions. Once I started mB12 supplementation I never let myself get low enough to have a problem from not having enough. But I don't mess around with sublinguals much any more and a single injection in the morning seems to last me all day. A couple months ago I seemed to stop needing the sublingual doses later in the day. Maybe I'm "topped off" with mB12. If so, I want to keep it that way.

I do notice it pretty quickly if I let my adB12 get too low, though, and also LCF. I forgot my LCF for about a week and on Sunday realized that was probably at least part of the reason why I was falling asleep during the day. Sure enough, taking my LCF in the morning picked me right on up. I hadn't had the sleepy afternoon problem for some years now, except for a brief interlude when I was adjusting to mB12 and still having some start-up reactions.

I don't let my folate get low enough to experience many symptoms from that, either. I should probably experiment a bit more with it but am unwilling to do that right now.

HTH.

 

[garyfritz]

Thanks @whodathunkit! That's 2.5mg/day injected mB12, plus some supplemental sublinguals? What about the adB12, are you injecting that too?? I haven't heard of anybody doing that.

Why do you say injected is so vastly superior to sublingual? What benefits do you get from it? I would like not having to stuff sugar pills in my mouth all day, but I imagine there are other benefits.

IM or SC?

I've totally dropped adB12, methyl folate, and LCF for the past 5 days. Hadn't noticed any changes. Last night I had mid-of-night problems that didn't clear up very well with sublingual CL or Readisorb -- wonder if that's connected? I suppose I should crank them up again but I have to wonder why. Maybe I just didn't get the adB12 high enough to benefit. I was only taking 4mg sublingual.

 

[garyfritz]

My doc OK'd 0.1mL 1x/day subcutaneous, so we'll see how that works.

Are there any tricks or whatever I should know about SC injection? I've read that you have to be a lot more careful because you might hit a nerve. Though you have to go through the SC layer to get to the IM depth so I'm not sure why it's any different...

 

[whodathunkit]

@garyfritz: use the 0.5ml insulin syringes. They have very short, small needles. I get almost no bruising with these, and the needles are so short it's hard to hit anything that's really going to hurt you. I feel nothing or almost nothing when I inject. Sometimes it's like I"m injecting another person, that's how much I don't feel it.

Inject on your stomach or inner thighs. There's usually enough skin/adipose to grab there even if you're skinny. Pinch an inch and just shove the needle in. The needles on these small insulin syringes are so short I don't think they can penetrate beyond the adipose layer, even on super skinny people. Easy-peasy.

Also don't forget to wipe your injection area with alcohol before you inject, and also wipe the membrane of your mB12 vial before you draw the dose.

I usually get all my supplies out and ready to use first (alcohol wipe, vial, syringe). Then I wipe skin and vial with alcohol. Then I draw the dose, put the vial down on the counter, and inject as soon as I'm done drawing. Literally, my mB12 is in the syringe for no more than 15 - 20 seconds. Vial is completely wrapped in foil so no light exposure there. Then I put my vial back into the fridge, recap and dispose of my syringe, etc.

 

[garyfritz]

Hm, OK. The doc's office just ordered me more syringes with short needles, but I'll see about getting insulin syringes next time. Where do you get yours?

They set me up with 18ga needles to withdraw, 28ga to inject. It's nice to have the big needle for loading the syringe, but opening up 3 packages and juggling 2 needles is a pain. Do you have any trouble drawing the dose with the tiny 29ga insulin needle?

I've been injecting in the outer thigh. No bruising yet, but I've only done it a few times. The long 28ga needle is pretty easy to take -- just a tiny prick when it goes in. But yesterday I must have hit something -- yowch!

You store your vial in the fridge? I didn't think that was necessary. They didn't ship it iced down or anything. And I thought injecting cold stuff was painful?

Thanks @whodathunkit!

 

[Freddd]

Hm, OK. The doc's office just ordered me more syringes with short needles, but I'll see about getting insulin syringes next time. Where do you get yours?

They set me up with 18ga needles to withdraw, 28ga to inject. It's nice to have the big needle for loading the syringe, but opening up 3 packages and juggling 2 needles is a pain. Do you have any trouble drawing the dose with the tiny 29ga insulin needle?

I've been injecting in the outer thigh. No bruising yet, but I've only done it a few times. The long 28ga needle is pretty easy to take -- just a tiny prick when it goes in. But yesterday I must have hit something -- yowch!

You store your vial in the fridge? I didn't think that was necessary. They didn't ship it iced down or anything. And I thought injecting cold stuff was painful?

Thanks @whodathunkit!

HI Garyfritz,

I use a 31 gauge 5/16" needle. It is available in 0.3, 0.5 and 1.0 ml with all 3 marked in 1/100 ml. I find it takes a half minute to draw 1ml. It can occasionally clog a little on micro nucleation of b12. If a sludge forms in fridge, warm in as teacup of hot tap water, agitate and the problem goes away. You can tell by feel of the draw. I put foil on my syringes and vials. A 31 gauge 5/16" needle makes life easy. Some pharmacies ship it with an icepack, some don't. MeCbl solution is relatively insensitive to heat but starts breaking down from light very quickly. I inject in the stomach skin. I don't find that amount of cool liquid to be any problem. Just make sure that all the alcohol is dry. That burns like hell.

 

[garyfritz]

OK, I was wrong, my needles are 27ga. 29 or 31 sounds better. Mine do definitely sting going in.

So if it's insensitive to heat, why store it in the fridge? Especially as fast as you go through it!

Where do you get your syringes, Freddd? Online somewhere?

 

[Freddd]

OK, I was wrong, my needles are 27ga. 29 or 31 sounds better. Mine do definitely sting going in.

So if it's insensitive to heat, why store it in the fridge? Especially as fast as you go through it!

Where do you get your syringes, Freddd? Online somewhere?

I didn't say it was insensitive, I said relatively insensitive, as opposed to breaking down from 10 minutes of room light in a vial and less in a syringe. AdoCbl breaks down in days in the fridge and faster not cooled. They both break down to some percentage of HyCbl with AquaCbl in an equilibrium reaction which competes with and blocks to some degree the MeCbl.. I want to do everything to get the maximum potency from mine. It barely works as it is at best. Some x% of breakdown over a 30 day period is not ok to me. I keep all but the current vial in the freezer. It is also a precaution against anything actually growing in it.

I get my syringes at Costco. They have the $26/100 Brand name ones and $10/100 generics.

 

[garyfritz]

Well, that was disappointing. Though probably predictable.

When I started a year ago, 1mg/day mB12 (Readisorb) was all I needed. Then 6 months ago it stopped working as well, and I eventually found this place. Started bumping up my mB12, then adding adB12, methyl folate, LCF. Didn't feel any change from any of those, but the higher dose of mB12 (4*5mg CL) worked.

Then I got the B12 injections. I stopped taking the sublingual CL mB12 -- AND everything else -- to see how the injection did on its own. When I first started them, I didn't feel anything from the shot, but it definitely worked. I slept through the night with no symptoms and (initially) no additional sublingual B12.

So I've had no adB12/mthfolate/LCF for 2 weeks. I haven't taken mB12 in the afternoon but I've been injecting 1mg/day mB12 for 1 week, generally in the evening. The last 2-3 nights I haven't been sleeping well at all. Last night I did my injection at 11pm, and 3 hours later I was awake with the twitches -- which is about what I'd see if I wasn't taking B12 at all! And once I wake up, it generally takes 3-4 5mg CL mB12 (over the course of 2 hours or so), and often a shot or three of Readisorb, before I can finally get to sleep. I'm also getting agitation / RLS / etc in the afternoons, which had pretty much cleared up with the CL mB12.

So the injected mB12 by itself is not enough. I'm kind of surprised that the CL mB12 helps me sleep when I wake in the night -- I would have expected the injected 1mg to work at least as well as 5-10 mg sublingual. But clearly the injected needs help. (And BTW I wrapped the vial in foil as soon as I got it, and I've kept it in the fridge for the last week.)

I'm restarting adB12 (starting at 4mg) and methyl folate (~ 3mg) along with the injected, and I'll see how that works. If I have to keep supplementing the injected with as much CL mB12 as I took before, I don't see much point in the injection.


I tried doing the SC injection in a fold of belly skin, but I didn't like that much. It seemed significantly more painful than shooting in the thigh.

I noticed something interesting... my doc ordered 18ga needles for drawing, 27ga for injecting. I decided juggling 2 needles & a syringe was a PITA so I was just going to use the 27ga for draw & inject. But poking the rubber on the vial seems to *dull* the needle considerably! If I only use it to inject, it goes in pretty smoothly. If I use it to draw, I have to *PUSH* to get it in. My skin depresses significantly, and sometimes the 1 1/4" needle bends noticeably, before it finally punctures the skin! Hurts more too. I'm surprised it dulls so easily.

I'm getting some 29ga insulin syringes like Freddd and whodathunkit use. Hopefully those won't dull when I draw, and they'll be "like injecting someone else" like whoda said.

 

[Freddd]

Well, that was disappointing. Though probably predictable.

When I started a year ago, 1mg/day mB12 (Readisorb) was all I needed. Then 6 months ago it stopped working as well, and I eventually found this place. Started bumping up my mB12, then adding adB12, methyl folate, LCF. Didn't feel any change from any of those, but the higher dose of mB12 (4*5mg CL) worked.

Then I got the B12 injections. I stopped taking the sublingual CL mB12 -- AND everything else -- to see how the injection did on its own. When I first started them, I didn't feel anything from the shot, but it definitely worked. I slept through the night with no symptoms and (initially) no additional sublingual B12.

So I've had no adB12/mthfolate/LCF for 2 weeks. I haven't taken mB12 in the afternoon but I've been injecting 1mg/day mB12 for 1 week, generally in the evening. The last 2-3 nights I haven't been sleeping well at all. Last night I did my injection at 11pm, and 3 hours later I was awake with the twitches -- which is about what I'd see if I wasn't taking B12 at all! And once I wake up, it generally takes 3-4 5mg CL mB12 (over the course of 2 hours or so), and often a shot or three of Readisorb, before I can finally get to sleep. I'm also getting agitation / RLS / etc in the afternoons, which had pretty much cleared up with the CL mB12.

So the injected mB12 by itself is not enough. I'm kind of surprised that the CL mB12 helps me sleep when I wake in the night -- I would have expected the injected 1mg to work at least as well as 5-10 mg sublingual. But clearly the injected needs help. (And BTW I wrapped the vial in foil as soon as I got it, and I've kept it in the fridge for the last week.)

I'm restarting adB12 (starting at 4mg) and methyl folate (~ 3mg) along with the injected, and I'll see how that works. If I have to keep supplementing the injected with as much CL mB12 as I took before, I don't see much point in the injection.


I tried doing the SC injection in a fold of belly skin, but I didn't like that much. It seemed significantly more painful than shooting in the thigh.

I noticed something interesting... my doc ordered 18ga needles for drawing, 27ga for injecting. I decided juggling 2 needles & a syringe was a PITA so I was just going to use the 27ga for draw & inject. But poking the rubber on the vial seems to *dull* the needle considerably! If I only use it to inject, it goes in pretty smoothly. If I use it to draw, I have to *PUSH* to get it in. My skin depresses significantly, and sometimes the 1 1/4" needle bends noticeably, before it finally punctures the skin! Hurts more too. I'm surprised it dulls so easily.

I'm getting some 29ga insulin syringes like Freddd and whodathunkit use. Hopefully those won't dull when I draw, and they'll be "like injecting someone else" like whoda said.

Hi Garyfritz,

When it is working well and at equilibrium it's unnoticeable. When stopped however symptoms come back. The deadlock quartet really is for a lot of us.

The best of the MeCbl injectable, 5 star, doesn't need to be augmented by a sublingual but 4 star injectable needs some help is my experience. It can vary by batch from the pharmacy.

31 Gauge is hardly noticeable generally. Subcutaneous keeps the serum level a lot higher for a lot longer as an 8 hr + time release.