B12 for probably non-ME/CFS symptoms

[whodathunkit]

@garyfritz, you might ask your doctor to consider a larger dose on mB12 as "more support", and to inject the larger dose every day, at least for a while. IMO 1mg every few days isn't enough. The half-life of mB12 in the body is pretty short, especially in cases of deficiency. For a while I was doing a dose of 0.4ml of injectable per day, which gave me 5mg/day of mB12. (BTW, the amount you inject doesn't really have anything to do with how many mg of B12 you get...mg of B12 per ml depends upon how they formulate the solution). I did 5mg/day for a couple of months (after doing 1-3mg/day for several months before that) before I felt like I was "topped out" and felt as good on a reduced dose. Point being, it took a while of big doses daily for me to feel like I didn't need that much B12. Everyone's different, but throwing it out there for you in case it might work for you.

Also, please keep in mind that you may have already had your B12 "aha" moment with the Readisorb. @sueami and I got the "aha" off our first injections, but we were likely coming from a place of almost absolute deficiency. I definitely was. You likely were not...you'd had a boost/good reaction to the Readisorb so you'd gotten a bit of your deficiency taken care of with that. So you may not get the big boost that we did from the injections. I think when you get the right amount of B12 and other stuff titrated you will definitely see improvement, but you may not ever get the "revelatory buzz". I wish I would get the same buzz off every shot as I did that first one, but unfortunately it doesn't work that way. Things still get better with continued injections, but the reaction is just a lot more subtle.

Just sayin'. It could also be that the B12 they injected you with at the doctor's office *was* degraded. If it was degraded to cyanocobalamin or even hydroxy maybe it wouldn't do you any good. I do hope you get an aha off the first injection you give yourself from your fresh vial at home. Just don't be unduly disappointed if you don't.

 

[garyfritz]

Good idea, @whodathunkit. I think I'll wait until I get my vial of B12 and see how that works, and if it doesn't seem to provide better results than this week's shot, I'll ask her about upping the dosage/frequency. I'll check next week and see what dose the 0.1 mL shot gives me.

If she doesn't go for it, can I just order my own mB12 from a compounding pharmacy? Or does it require a prescription? Where do y'all get your B12?

I didn't realize daily dosing was necessary. I can't find a good reference but I thought the half-life of injected mB12 was on the order of 4-6 days, which says 1-2x/week would be sufficient. Did you do the daily injections just to build up your serum levels to a good steady-state level? How often do you dose now that you're "topped out" ? Do you expect to do injections forever, or can you use sublinguals to maintain a good serum level once you "tank up" with the injections?

How do you protect your B12 from light? Do you wrap the syringe, and if so, how do you see the dose?

Good point about the "aha" moment. If I had started injections last summer, I probably would have had a religious experience. But now, with multiple mB12/adB12 sublinguals per day, I think I'm keeping my B12 levels reasonably high already. The injection may not make a huge difference. (Though the total LACK of efficacy with this week's shot is concerning. Hopefully it's just degraded B12.)

So I'm not really looking for a "buzz" from the shots. If saturating my system with B12 just produces a steady, reliable function of my nerves/muscles, similar to or better than my 1st 6 months with Readisorb, I'll be a happy camper. The lozenges seem to have a VERY short half-life, on the order of hours, and I'd rather have a steady high level.

If the higher serum levels (higher than I can maintain with questionable absorption of sublinguals) enables healing and makes me better, that would be fabulous.

 

[whodathunkit]

@garyfritz: LOL. For me, my first shot of mB12 *was* akin to a religious experience. I finally understood what all the fuss was about B12. Never had before.

Injectable B12 does require a prescription, unfortunately. I get mine from a pharmacy that's about a 2 minute car ride from my house. There are also a couple of other good pharmacies around but many compounding pharmacies don't take insurance. I'm just lucky this one does, and that it's also so close. If you need suggestions on where to purchase, you can PM me. My local pharmacies do ship. Or PM @sueami. She's near you and is probably a better resource.

My understanding is that the half-life of mB12 is longer if you are not deficient, but if you are then it's considerably shorter than what the literature may reflect.

I tend not to go on lab tests so much for things like mB12 that are relatively benign even if your levels are high. I tend to go more on how I feel. So I don't really know what my serum levels are. I've been messing around with supplements for a long time so I'm comfy with doing things this way. Others may prefer to have more "objective" guidance in the form of lab tests. Personally, I like to hang onto my $$$ when possible. And lab tests don't tell me a thing about how I feel.

FWIW, minerals and other things I *will* get tested for, because some things can be toxic. But other things not so much, so I skip those tests except once in a while for reference.

There are also different tests that can reflect the different levels of different nutrients like mB12, and how well your body may be utilizing them. The normal serum test ordered by a doctor does not necessarily say anything about how well your body is utilizing the nutrient or what's getting into your cells, just says what's circulating in your bloodstream. Unfortunately I'm not too boned up on all the names of all the tests because I haven't needed to use them. But they do exist. If you do a little research on the forum you can probably find some info. Or do an internet search. Or maybe someone more knowledgeable than me will chime in.

There's a really good book on B12 called "Could it be B12?", that can give you a lot of information. It's available on Amazon, and if you like ebooks you can start reading it right away.

I want to keep my injections forever, but who knows if I will be allowed to do that. Depends upon the doctors I have. Right now I'm lucky and have a bunch of good ones who are receptive to alternative therapies and will listen seriously to me when I present them with new ideas and evidence that may be outside the scope of what they normally do. I have my wonderful hematologist to thank for the mB12 injections. They've helped my anemia, which is what he prescribed for, but also have done so much more.

Also depends upon whether or not compounding pharmacies will be allowed to thrive in the future. There are a lot of business interests that want to take supplements and natural therapies out of the hands of consumers so that our only health choices are mainstream pharmaceuticals. Hope I'm dead before that ever happens but the way things have been going these past few years I'm becoming much more paranoid that it *could* actually happen than ever before. I used to think it was an overblown fear voiced by people who were just overly suspicious and anxiety-stricken in general...now I'm not so convinced that it is.

Bottom line is that you'll probably have to experiment to see what works best for you. A lot of this is very subjective. 5mg/day might not work for you, for example. It might make your symptoms worse. Or it could help. You won't know what works until you're able to try some different approaches. At least now you know one approach *does not* work: getting your shots from your doctor's office.

You'll also have to be a semi-aggressive advocate for yourself. Meaning, if your doctor needs persuading, persuade her to try new things. Persuade her that a higher dose might work. Persuade her of other things you might want to try. Don't give up. Present evidence, etc. I find that setting a time-limit on new approaches (Can we please try this for two months and then evaluate with bloodwork, can we do that?) is helpful. That way it's not open-ended and the doctor can be assured they're not doing you harm. And you get to try things that might be of benefit. They get the benefit of seeing how a new approach might affect their patients. Win-win.

I wrap my vials of mB12 in tinfoil as soon as I get them. Then I put them in a light-proof envelope and into the fridge. They live there except for the 10 seconds it takes me to draw my dose every day. I don't bother to wrap my syringes because I inject immediately upon drawing my dose. The whole dose may be exposed to light for *maybe* 20 seconds.

The only time I ever wrapped a syringe in foil is when I took a dose to the dentist's office so I could inject after some surgery. I did that because nitrous oxide can use up all the mB12 in your body very quickly, so I loaded mB12 before and after surgery. But unless you're planning to delay your injection after you draw it, there's IMO no need to wrap the syringe. Just always keep the vial wrapped.

HTH.

 

[garyfritz]

Yes, I'm not bothering with B12 tests. Everything I read says they're not very reliable. And most doctors think any level that doesn't cause anemia is "all you need." I've read the RDA in Japan is about 3x what it is in the US, because they actually *study* this stuff.

I'm surprised you'd do dental surgery with NO, knowing how it destroys mB12... but I guess if you load before & after you're probably fine. Certainly better off than the typical dental patient.

BTW Freddd says here that it just takes a minute or two of light in a syringe to degrade the B12.

 

[whodathunkit]

@garyfritz, thanks, nice find with the link. I was very interested in that! I've read the same but I don't think in that post or that article. Good to have the evidence instead of just reverting to anecdote. I love anecdotes but anecdotes + evidence = more credibility.

I haven't found that my mB12 is *that* sensitive, but I don't think I've ever given my mB12 more than a minute's total exposure to any additonal light besides whatever it gets when my pharmacy packs it up. LIterally, my doses in the syringe don't spend more than 20 seconds exposed to light before they go into me. The light-resistant brown bottle is exposed for maybe 30 seconds when I wrap it in foil. You get the idea. It's impossible to draw an accurate dose when the syringe is covered in foil, anyway, so IMO the extra few seconds before I stick it into my body can't make that much difference. YMMV. I just think wrapping the syringe in foil after you draw is extra time and trouble that aren't worth it. Unless of course you're going to store the loaded syringe. In which case, yeah, foil definitely.

About the NO: that was a tough choice. I ddin't want it because of my recent experience and learning about mB!2. But I had the first bit of surgery (two step process) without it, and I had a farily unpleasant post-op experience. Muscle aches and pains for weeks afterwards. For about a week after the surgery I actually had muscle tension/soreness like I'd been working out, especially in my neck and upper back, and on the whole side of my body where my head was tilted towards the orthodontist. It was weird. And uncomfortable. I think what happened was even though I was sedated, and couldn't move, on some level I still felt the pain and just wasn't relaxed enough throughout the surgery to keep myself from tensing up. It felt like I'd been tensed up the whole time.

Plus with the first surgery I had a lot of swelling and pain at the actual site.

So for the second surgery I opted for the NO to see if it was different. NO has been proven to relax and enhance any effects from other anesthetic agents. But I injected 5mg mB12 before I had the surgery and 5mg immediately afterwards. This time I had no muscle soreness at all, and in fact my whole post-op experience was less painful with much less swelling, even though the surgery took longer and I actually had more stuff done that should have been *more* painful and caused more swelling. No neurological effects, either.

Pretty much everything I've read says that if you take prophylactic measures against mB12 depletion, NO is fine. I was just being overly cautious with the first surgery. On the second go-round I think the NO helped on several levels, not the least of which was my stress response. I now believe an increased stress response (i.e.,more cortisol and other inflammatories released by my body due to the stress) during the first surgery without NO is what caused me to have more post-op pain and swelling at the site, for example.

 

[garyfritz]

Nice to know that prophylactic B12 can prevent problems with the NO.

On the light in the syringe: I think I'm going to be paranoid and make a little sleeve for the syringe with some tubing or something. I'll make something that can be slipped onto the syringe but leaves a small slit visible, so I can see what I'm drawing. If it's as sensitive as Freddd says, might as well do what I can to protect it.

 

[whodathunkit]

Not a bad idea. If you come up with an easy and durable idea, let us know.

 

[garyfritz]

I just got some black rubber tubing, cut off a 1" long piece, and slit it along one side. It slips easily over the syringe and leaves a narrow slit so you can see the contents. It's easy to use and I figure it can't hurt.

Got my second shot yesterday. Still no noticeable effect. @whodathunkit, you said it took several months of 5mg/day to feel "topped out." Do you think you would have even *felt* 1mg every 4-7 days, on top of 15-20mg/day sublingual? I think I'll need to talk to my MD to convince her I need more than 2 mg/week to make any progress. The nurse yesterday seemed scandalized that I would even consider larger or more frequent doses. She pulled my chart and found a B12 test a few years ago that said I was running about 700 pg/mL, and she huffed that I was well into the normal range. I resisted telling her she wasn't the doctor, but said I had the mutations, B12 relieves my symptoms, and the MD said I needed it.

I may have to look up Sue's doc if my MD insists on 1-2mg per week...

 

[whodathunkit]

Do you think you would have even *felt* 1mg every 4-7 days, on top of 15-20mg/day sublingual?

IMO, no, you would not have felt that dose, especially since you've already apparently gotten some of your methylation processes started with the Readisorb.

Please, for the love of all that is holy, BYPASS THE NURSE. Don't waste your time talking about alternative health practices with a nurse. Go straight to the doctor. I have had this problem myself, and dealing with the nurses will only lead you to want to bash heads in, especially your own. Nurses have just enough "political" power around some offices to interfere between you and your doctor if they know nothing about what you're talking about and maybe don't "approve" of things they've never heard of or don't understand, but not enough medical knowledge, critical judgement, or autonomy to make a reasonable judgment call based on anything you say to them. In other words, they can't do squat for you except interfere in a negative way. The best thing that will happen is they'll make another appointment for you to come see the doctor. Worst is they will actively obstruct a course of action they don't approve of. I've had both happen, in the same office, with regards to my mB12 script.

Don't get me wrong. I love nurses. I quite literally work with them all day. As a profession they are good people, and not everyone can do what they do. It's a very tough job. But I have had a couple of really, really bad experiences with the nurses at the office where my hematologist practices, and I will never, ever talk to any of them about anything except my TPR, blood pressure, getting a blood draw, and the weather. If they don't understand something, it doesn't get to your doctor, period. The only way you have of ensuring the information you want to convey to your doctor is transmitted accurately is speaking to her/him yourself.

Another thing: when you see your doctor, go in armed with evidence. Work at understanding what you're talking about and practice what you want to say. Show the doctor you understand what time it is and that you're a responsible adult that can be trusted with his/her own health. So many people aren't responsible, I almost don't blame doctors OR nurses for not trusting their patients even with relatively benign stuff.

Before s/he steps out of his/her sphere, the doctor has to have faith that you're not some dummy that's going to misuse what they give you and then turn around and crucify them with any bad results: "It's your fault for giving it to me even though I wanted it and asked for it!" Etc.

For example, I showed my doctor some stuff out of the B12 book I told you about, as well as some studies and other things about B12 in order to convince him to give my ideas a try. We talked for quite a long time. He flat out told me that it was not something he'd normally do but he was comfortable with trying it because he knew I'd come in for tests when I said I would and do the right thing if I didn't react well.

And if that doesn't work, definitely go doctor shopping. There is too much happening out there now to stick with someone who won't listen to his/her patients, and/or experiment with using safe natural therapies in innovative ways.

 

[garyfritz]

Please, for the love of all that is holy, BYPASS THE NURSE.

Heh. Don't beat about the bush, tell us what you REALLY think!! LOL

Fortunately I don't normally have to interact with them much. A different (and very helpful) nurse showed me the process for giving myself the shot the first time. I went in the second time expecting to practice with supervision, and when I walked into the room this other nurse had the dose all drawn already. (And sitting out in the light, grr. And obviously thought I was a loon for slipping my little syringe sleeve on. Probably I was, that horse was already out of the barn.)

Generally the nurses just chat with you for a few minutes while they take your BP &etc to find out why you're there, then the MD does all the talking. Once I get my own vial of B12 I won't have to deal with the nurses. I'll just have to get the MD on-board for larger/frequent doses.

Another thing: when you see your doctor, go in armed with evidence.

I agree. I don't like going to my doctor saying "well these people I don't know on some Interwebz forum think I should use ginormous doses." I trust your & Freddd's &etc results, but I would like to have some stronger evidence backing it up to strengthen the claim. I'm fighting Lynch's "start low & go slow" dictum, and Lynch is a pretty strong expert to buck.

Fortunately I've been going to this MD for 20 years and she knows me. She knows I generally know what I'm talking about and I research stuff. I hope she'll trust my judgement when I plead my case for larger/more frequent doses.

And if that doesn't work, definitely go doctor shopping.

I will if I have to.

I'd be more comfortable with it if I was sure that was the answer. The small doses of Readisorb worked miracles for 6 months. Maybe the megadoses of injected mB12 will work miracles too... but will they lose their magic in 6 months? Or will they actually fix things?

 

[whodathunkit]

garyfritz, things evolve. Your biochemistry changes, with the new supplements but also as you age. You get one problem corrected and maybe that allows another problem to float to the surface. I suspect you'll see positive gains with all this, as most of us do, but it may be a while before the gains are static. It's going to be some work. For me it's frequently three steps forward and two steps back. You're going to be continually disappointed if you think it's going to all be like your little honeymoon period with the Readisorb, with a straight upward trajectory from illness to wellness. You were lucky to get that honeymoon, and for as long as you did. Many of us don't.

My first mB12 shot was more like a revelation, not a miracle. It felt temporarily like a miracle but it quickly became apparent that it was not a cure-all. The real miracle is how all these supplements work in synergy to help us feel better. But even at that, my own honeymoon period with the entire Deadlock Quartet lasted a few weeks only, and then I got sick as a dog before getting better again. I felt much better than I actually was. I felt like I had endurance to do much more than my body was actually capable of. So be aware there's a big diifference between feeling better and actually being physically capable of what your mind thinks your body can do.

And it's been a lot of tweaking, reading, and researching ever since. But again, three steps forward and two steps back can be the pattern. As long as the net gain is positive I'm personally good with that. I hope you can be, as well.

Good luck, let us know how it goes!

 

[garyfritz]

whoda, you posted while I was writing this, but it's kind of related.

Something I was wondering about... what is the "nature" of the B12 supplementation? Especially given that I seem to develop resistance to it over time?

* Is it an ongoing requirement like drinking water? You need water every day and it's a vital "nutrient." The issues with MTHFR &etc mutations suggest that B12 might be essential like that (and it is a vitamin after all), and we just have to supplement it every day. Due to our SNPS we have to supplement more aggressively than most.

* Is it an actual healing agent? Freddd suggests that. If so, you would expect you could ramp up to a high healing dose, then back off to a maintenance level once healing is complete.

* Is it a damaging or addicting agent? Heroin feels good when you take it, and once you start it's hard to stop. You tend to get resistant to it so you have to increase your fix to keep getting your high. That sounds uncomfortably like my experience so far with B12... The "honeymoon period then sick as a dog" pattern doesn't really sound like a benign process.

Just wonderin'...

 

[whodathunkit]

Is it an actual healing agent? Freddd suggests that. If so, you would expect you could ramp up to a high healing dose, then back off to a maintenance level once healing is complete.

Yes, it is. And yes, theoretically, you can ramp down after you heal. The problem is knowing when you've healed. When someone hits 50 and over, we must assume the damage is greater and will take longer to heal. SNPs also are a factor in dosage and ongoing needs.

Please do some research regarding some of your questions (e.g., the getting sick then getting better etc.) , see if you can't come a better understanding. There is a lot of information out there already. I want to help you but don't have time to reinvent the wheel. I hope you understand.

 

[garyfritz]

I understand, and I don't expect to be spoon-fed. The challenge is just having some idea of where to look. ("Out there" is a big place. )

And, of course, finding the time to do the digging...

 

[Freddd]

Yes, I'm not bothering with B12 tests. Everything I read says they're not very reliable. And most doctors think any level that doesn't cause anemia is "all you need." I've read the RDA in Japan is about 3x what it is in the US, because they actually *study* this stuff.

I'm surprised you'd do dental surgery with NO, knowing how it destroys mB12... but I guess if you load before & after you're probably fine. Certainly better off than the typical dental patient.

BTW Freddd says here that it just takes a minute or two of light in a syringe to degrade the B12.

Hi Garyfritz,

I wrap the syringe because the MeCbl in the syringe gets 10x as much light per second as the vial does because it is long and skinny and has 10x the surface area per ml. In the tests I performed, in ordinary room light, I found 2 minutes exposure in the syringe sufficient to make a noticeable loss of effectiveness and caused acne type lesions. It takes me a while to draw a 31 gauge syringe, and even if the loss of effect doesn't cause acne, it does some damage as the damage is cumulative. Two 1 minute exposures has the same effect as 1 two minute exposure.

I also inject a double dose SC of MeCbl just before the dentist office and use nitrous as needed. The MeCbl trickles into my system all day from that one injection. Studies have shown that it takes about 2 weeks for somebody using nitrous every day (for wound care at home for example) to start getting demyelination lesions. I don't have any increase in cobalamin excretion in urine that would be visible if I went into methyltrap from the nitrous so my prophylactic MeCbl SC injection appears to work as intended.

I have written up on the levels of methylation and healing post, in great detail, what happens and how it all fits in. That "awful sick" is the start of low potassium and low folate from starting healing in a serious way. If those are taken care of healing can continue.

 

[garyfritz]

And the syringe doesn't have the amber glass protecting it either. FWIW at my MD's office they use a larger-gauge needle to draw the dose, then switch to the fine-gauge needle for the shot. Might not save much time by the time you mess with two needles, but it might be easier.

I like the idea of the prophylactic mB12 shot to protect you from NO. Maybe a prophylactic mB12 lozenge might protect me so I can still enjoy the occasional beer/wine/etc.

 

[garyfritz]

I like the idea of the prophylactic mB12 shot to protect you from NO. Maybe a prophylactic mB12 lozenge might protect me so I can still enjoy the occasional beer/wine/etc.

Actually I just tested it last night. Some friends invited me to dinner last night and we had several bottles of wine. I usually take my B12 in the afternoon/evening, so I just took 10mg in the hour before going to my friends' house, then another 10mg after I got home. Slept great and didn't need any B12 in the night.

 

[Freddd]

Actually I just tested it last night. Some friends invited me to dinner last night and we had several bottles of wine. I usually take my B12 in the afternoon/evening, so I just took 10mg in the hour before going to my friends' house, then another 10mg after I got home. Slept great and didn't need any B12 in the night.

Hi Garyfritz,

I take 3 x 10mg SC injections every day. Perhaps 1/2 of the b12 is absorbed in 4-8 hours and the rest over 24-36 hours. That way 3 injections daily keeps my brain in the healing zone 24/7. That's what many people with CNS B12 deficiencies need to do to reverse the symptoms. I'd be in a wheelchair in 3 months without the injections or huge amounts of sublingual.

I no longer have any problem with tolerating alcohol so I can enjoy a beer or wine or Gin and tonic or a Daminana infused brandy ("long life elixir", a possible aphrodisiac) or whatever. That changed when my body healed with the deadlock quartet..

Japanese research used the term "up-regulates neurological healing" in regards to 50mg doses of MeCbl. For costs sake I and some others ran trials to see how little we could use to get the maximum healing effect. Most do well with 4x7.5mg or 3x10mg or 2x15mg. The CNS threshold appears to be >6mg and <=7.5mg for all those who tried the larger injections.

 

[sueami]

@Freddd, what levels of mfolate are you taking with 30 mgs mb12?

 

[Freddd]

@Freddd, what levels of mfolate are you taking with 30 mgs mb12?

I take 4.8mg 3 times a day for a total of just under 15mg daily. In the Deplin studies the most effective doses were 15mg and 30 mg a day. Since bringing B1, B2 and B3 down to the most effective levels that don't overdrive need for methylfolate and potassium, getting consistent on taking 3 doses EVERY day, I haven't had a folate insufficiency episode. However, even when I wasn't getting that much absorbed during the CL trial, I still needed the same amount of folate. The linkage between folate need and quantity of MeCbl or AdoCbl is very loose.