Re-started B-12 shots/Methylation today after prior over-methylation fiasco- wish me luck!!!

[Gingergrrl]

A few months ago I had a severe over-methylation reaction b/c I was stupidly taking doses that were way too high. In a short period of time, I had gotten up to 7 mg of MB-12 shot and 2.5 mg of M-folate. It was a disaster with symptoms so bad I thought it might kill me and led my Dr to run a bunch of tests to rule out other causes.

I felt today that enough time had passed so I am braving to try again but with MUCH lower doses. For the MB-12 shot, I am only doing 1 mg and for the Folate I am only doing 200 mcg.

I realized that my Magnesium supplement (which is a special slow release Magnesium SRT by Jigsaw Health- the only one my stomach can tolerate) actually contains 200 mcg of M-Folate which I never knew! So back when I was taking the Folate, I was actually taking even more than I'd realized due to what was unknowingly in the Magnesium!!!

So for now, all I am doing is taking the Folate in the Mag and not adding the extra Folate which I bought. I had planned to take 200 mcg to start so it seemed like what I am getting in the Mag is enough. If I need to increase, I bought a bottle of 800 mcg Folate (which I will cut into quarters.)

Does this seem like a good plan? Also, should I do the 1 mg MB-12 shot every day or 3x/wk like I did it before? At the lower dose it seems like every day might be okay?

I am tagging a few people just to get confirmation that I am on the right track attempting this again. @Sushi @caledonia and @Valentijn

Thank you all so much!

 

[Sushi]

That sounds like a good plan. I think methyl B12 has a short half life? If it were me, I'd take it every day.

Sushi

 

[caledonia]

Hi Gingergrrl,

I wish there was a way you could go even lower and slower to start out. Those are actually more like final doses, unless you end up being one of the ones who needs super high doses (and it doesn't look like that's you).

Have you tried something like magnesium oil, that you can rub into your skin, thus bypassing the stomach? That way you could decouple the magnesium from the folate supplementation.

What are your plans for potassium supplementation? There was somebody on here who couldn't tolerate that, but I can't remember if that was you or not.

Are you having other stomach/gut issues, and/or what types of treatment have you done for your gut?

 

[Gingergrrl]

@caledonia Thank you for your reply. I don't think I could go lower than 1 mg for the MB-12 in the shot b/c that is the lowest the needle goes. I guess I would need to switch to something sublingual to do that?

Is there a reason that the M-folate would not be okay if it is coupled with the Magnesium? I made sure it is 5-MTHF and NOT folic acid so it is in the good form.

I have been taking a HUGE potassium pill supplement since I was in the hospital and tolerating it well so I know I am getting enough potassium. I think you might have been thinking of another person re: this issue.

I no longer have stomach/gut issues and did a major treatment protocol for suspected leaky gut. I've been on a very strict food plan since June, take two probiotics, digestive enzymes, and did GI Repair Powder for months (until my ND told me to stop b/c no longer needed.)

The only time I have stomach issues now is if I take a supplement that doesn't agree with me (like when I tried to increase Monoluarin higher than 1800 mg/day) or when I tried less tolerable forms of Magnesium. The one I have now works well so I'd hate to change it. I have not tried Mag oil. I asked my CFS Dr about Mag shots but he was opposed to it for me at this time (I forget why and would have to check my notes.)

 

[caledonia]

@caledonia Thank you for your reply. I don't think I could go lower than 1 mg for the MB-12 in the shot b/c that is the lowest the needle goes. I guess I would need to switch to something sublingual to do that?

Is there a reason that the M-folate would not be okay if it is coupled with the Magnesium? I made sure it is 5-MTHF and NOT folic acid so it is in the good form.

The reason it could not be ok is because if that's the only form of magnesium you can take, and you needed to go lower with the mfolate, then you may not be getting enough magnesium. So if you can decouple them, then you can adjust each one separately of each other.

I did find this - just plain dimagnesium malate from Albion Labs - the same as in your Jigsaw pill. http://pforlife.com/magnesium-dimagnesium-malate-20-magnesium-usp-chelate-powder-albion-labs.html
You can possibly take smaller amounts more often to simulate the sustained release. I take mag and several other supps 4 times a day.

So in that case, you could cut your Jigsaw pill down as low as you need for the mfolate and get your mag from the plain powder. Or discontinue the Jigsaw pill and take mfolate and mag separately.

If you wanted to go lower with the B12, then you could either go with a sublingual, or possibly take the injection less often. However, I've found that with smaller, more frequent doses, you can take more safely.

 

[Sushi]

@caledonia Thank you for your reply. I don't think I could go lower than 1 mg for the MB-12 in the shot b/c that is the lowest the needle goes. I guess I would need to switch to something sublingual to do that?

I use 1/2 ml needles, so I can give tiny doses if I wish to. At the moment I am giving myself .8 mg injections. I could easily make that .2 mg if I wished to.

So, you can buy another type of needle if you wish to give injections of less than 1 mg. You just need to know the dilution of your Methyl B12 solution, which will be on the bottle.

Sushi

 

[Gingergrrl]

The reason it could not be ok is because if that's the only form of magnesium you can take, and you needed to go lower with the mfolate, then you may not be getting enough magnesium. So if you can decouple them, then you can adjust each one separately of each other.

I did find this - just plain dimagnesium malate from Albion Labs - the same as in your Jigsaw pill. http://pforlife.com/magnesium-dimagnesium-malate-20-magnesium-usp-chelate-powder-albion-labs.html
You can possibly take smaller amounts more often to simulate the sustained release. I take mag and several other supps 4 times a day.

So in that case, you could cut your Jigsaw pill down as low as you need for the mfolate and get your mag from the plain powder. Or discontinue the Jigsaw pill and take mfolate and mag separately.

If you wanted to go lower with the B12, then you could either go with a sublingual, or possibly take the injection less often. However, I've found that with smaller, more frequent doses, you can take more safely.

@caledonia I apologize for my slow response to your post and really appreciate all your info and knowledge on methylation.

You are totally right re: the Magnesium and I am in the process of finding another kind where the Mag and Folate are not together so I can control the amount of each separately. I looked at the link you gave me but was confused. Is it a powder that you mix with water and drink?

I've gotten a lot of feedback re: different ways to administer Mag besides pills (IV, injection, transdermal gel, nebulizer) and was wondering what works best for you? I am trying to compile all the info I can before I make a decision and I know that I need more Mag for my heart/autonomic issues.

I also have another question for you- I was tentatively diagnosed with micro vascular angina (due to angina type episodes with shortness of breath after exertion) and realized that the two worst episodes that I had last week were on the two days that I had re-tried the Methyl B-12 shots (1 mg each time.) Do you think there is a correlation? I also have very low BP and many other factors involved but I am thinking of completely holding off on re-trying methylation until I get this other stuff sorted out.

Thanks again for all the great info that you provide.

 

[boo85]

@Gingergrrl

Are those definitely methyl B12 injections? And not hydroxycobalamin injections?

I ask because I think, at least here in Australia, B12 injections are usually hydroxy...

How often is your 1000mcg injection? Every day?

Have you had your genetics tested by 23andme?

 

[Gingergrrl]

@Gingergrrl

Are those definitely methyl B12 injections? And not hydroxycobalamin injections?

I ask because I think, at least here in Australia, B12 injections are usually hydroxy...

How often is your 1000mcg injection? Every day?

Have you had your genetics tested by 23andme?

@boo85 First, I like your Avatar and the crystal heart is really cool!

Now, to answer your questions, my injections are definitely methyl b-12. My cfs doctor wrote the prescription which we filled at a compound pharmacy and the bottle says methyl b-12 on it.

He initially wanted me to do 10 mg 3x/wk but I knew that was way too high of a starting dose for me. I started at 5 mg instead (back in Aug) and increased up to 7 mg while increasing m-folate and then had a horrible over-methylation reaction which I talked about in another thread.

I stopped completely for at least a month (maybe two?) and re-started last week at only 1 mg of methyl b-12. I intended to do it every day, but this did not work out logistically, so I have only done it twice (and both days had an angina type reaction later in the evening.) But it could have been coincidence and I am not blaming the shot. I was curious if this has ever happened to anyone else? I have a lot of other factors going on so trying to sort it all out.

As for your last question, I did do 23andMe and am compound heterozygous on the MTHFR gene in case that is why you were asking? I do not have any science background so all of this is completely new to me.

I would love to hear any feedback or thoughts that you have about this.

 

[Sidereal]

Hi Ginger, for what it's worth, I always develop shortness of breath and a host of other unpleasant symtoms on methylation supplements. Methyl B12 is the worst, but it also happens on hydroxo and adenosyl to a lesser degree. I can't even imagine what would happen to me on the doses that have been prescribed to you.

 

[Gingergrrl]

Hi @Sidereal Thank you for what you said and it is worth a lot. I may be one of those people who just cannot handle the methylation supplements or at least not right now.

I have not tried the two other types of B-12 that you mentioned so not sure how I would react to those?

I have very frequent shortness of breath, tachycardia, and blood pressure issues (basically total autonomic chaos!) but I did not make the connection until yesterday that the two worst episodes of angina that I've ever had were on the two days I tried the b-12 shots again.

I am not going to try them again so if I get the bad angina again then I know it is not from the B-12. I am hoping it was b/c it was so scary when it happened.

Thanks again for your feedback.

 

[whodathunkit]

@Gingergrrl: are you taking potassium? Were you taking it when you had those bad symptoms?

 

[Sushi]

@Gingergrrl

I can't tolerate Methyl B12 but do fine with hydox B12, which is what my doctor usually prefers. There are "valid reasons" to prescribe either of them, but ultimately it is your body's feedback that seems to provide the best feedback.

Sushi

 

[Gingergrrl]

@whodathunkit Yes I am taking a prescription potassium pill the generic of K-dur.

@Sushi For now I am holding off on the shots and conferred with my Dr but if I try again some day, I will ask about hydroxy B-12 instead.

 

[whodathunkit]

I figured you knew enough about potassium. Just checking. I wish you the very best of luck this go-round.

My motto is we can complete a journey of 1000 miles by going three steps forwards and two steps back. Nobody wants to do it this way, but we gotta do what we gotta do however we can do it, right? Hope it doesn't go this way for you but if it does please don't get discouraged.

Keep us posted!

 

[Gingergrrl]

I figured you knew enough about potassium. Just checking. I wish you the very best of luck this go-round.

My motto is we can complete a journey of 1000 miles by going three steps forwards and two steps back. Nobody wants to do it this way, but we gotta do what we gotta do however we can do it, right? Hope it doesn't go this way for you but if it does please don't get discouraged.

Keep us posted!

@whodathunkit Thanks for asking me about the Potassium and never assume that I know anything b/c half the time I don't!

I love your motto and it gave me some hope today which has been really hard. I am trying to figure out the right doses and what to do with new meds and possible diagnoses and overall just feeling very ill today. Thanks again!

 

[boo85]

@Gingergrrl

How much potassium per day are you taking now? Or planning on taking once you start B12 again?

Are you taking l-methylfolate along with B12?

When I first started B12 (cyano) it cleared up my B12 deficieny symptoms within days. That's how I knew it was low B12, but then a few days after starting B12, one day I went to bed with a headache. I felt soooo out of it, my heart started beating faster than I had ever felt it beat before. I thought it was going to beat out of my chest. I ended up going to the ER who didn't find anything wrong except maybe a panic attack. That was no panic attack at all.

After doing some research, I saw that, exactly as what Freddd described, a few days after starting B12, people might experience hypokalemia, low potassium, which is exactly what happened to me. Because the body cranks up healing, to heal nerves and create new blood cells. One example is that I had lost feeling in both arms over the course of 4 - 6 weeks due to low B12. So when I suddenly gave my body what it was deficient in for so long, it eventually ran out of potassium which caused the fast heartbeat, headache, paranoia etc. For me, this usually happens within the first few hours of sleep, I think because that's when the body is doing most of its new blood cell healing and creation (or at least preparing for it by draining potassium reserves.)

This was only with 500mcg of cyano B12 in one day, by the way, so nothing like 7000mcg like you want to take. I think that's why it's a better idea to start low and go slow.

So hypokalemia is very real when taking B12. If you have good kidneys you shouldn't need to worry about taking too much potassium as whatever your body doesn't need it will filter through the kidneys and you will pee it out anyway. Hypokalemia is the more likely possibility here. I take 4 grams per day at the moment as salts. I take A Vogel No Salt which is 97% potassium and 3% herbs. It's really a replacement to sprinkle of food for people who want to reduce salt in their diet. You can get it from ebay if you ever want to take higher doses of potassium. They don't even sell potassium pills unless it's with a prescription in my country. I don't really want to take 40 potassium pills per day. So it's easier to just mix it with a bit of water and gulp it down.

But even though I think I've potassium sorted out, it's still been a journey for me to take B12, even though I know it's what I need. I don't react well to cyano B12 or even methyl B12 tablets. I'm not sure what I'd be like taking methyl B12 injections, but I imagine I'd react the same as with the tablets? I think that a few weeks after starting tablets, I get really really anxious and it just doesn't agree with me.

So what I'm going to try next is B12 hydroxy injections more often. My doctor has agreed to putting me on a 1000mcg hydroxy B12 every two weeks for 3 doses, but then back to one injection per month for I don't know how long for. Maybe until she thinks I should stop? I don't know... a lot of doctors are funny about B12 for some reason. They think B12 isn't really good for anything so they wonder why you want it so much. As if it's more of a placebo than anything.

So even though my doctor isn't that keen on my having injections more often, I've also ordered hydroxy B12 lozenges from iherb which is another alternative to getting hydroxy B12 that isn't injections. I didn't even realise that you could get hydroxy B12 from another form other than injections before. According to Freddd, some people tolerate hydroxy B12 better because your body can take what it needs and use the hydroxy B12 at its own pace, but with cyano and methyl B12, it's kinda "forced" to make use of all that B12, at least that's how I interpreted what he said.

Have you tried hydroxy B12 before?

Oh, and make sure to thoroughly go through all of your vitamins, and check the label to see what is in each and every one. For example, I wasn't aware of this, but both my iron tablets contained between 10 - 50 mcg of cyano B12. You just wouldn't think to look for B12 in an iron tablet but there it is. So make sure to double check what you are taking because I got caught out by not knowing.

Also, my other advice would be to make a journal, or even use this thread to keep track of what you are taking and your symptoms. Try to write in your journal every day. It becomes harder over time to remember what you took and when, especially when your memory is affected by low B12, but if you have a journal you can read up with great detail your journey and connect the dots easier.

I've made my own journal if you want to read through it - http://forums.phoenixrising.me/index.php?threads/boos-healing-with-b12-journal.32813/

 

[caledonia]

@caledonia
You are totally right re: the Magnesium and I am in the process of finding another kind where the Mag and Folate are not together so I can control the amount of each separately. I looked at the link you gave me but was confused. Is it a powder that you mix with water and drink?

Yes, it does appear to be powder you mix in water and drink.

I've gotten a lot of feedback re: different ways to administer Mag besides pills (IV, injection, transdermal gel, nebulizer) and was wondering what works best for you? I am trying to compile all the info I can before I make a decision and I know that I need more Mag for my heart/autonomic issues.

Vinco's magnesium glycinate powder that you mix in water and drink works best for me. I take it four times day.

I also have another question for you- I was tentatively diagnosed with micro vascular angina (due to angina type episodes with shortness of breath after exertion) and realized that the two worst episodes that I had last week were on the two days that I had re-tried the Methyl B-12 shots (1 mg each time.) Do you think there is a correlation?

As it's happened twice, it does sound like it's a possibility. It may not be B12 directly, but low potassium or some type of detox, set off by taking B12.

It sounds like you're going to need to go even lower and slower. 1000mcg is a full dose, not a starting dose, especially for ME/CFS patients who are often extremely debilitated. I don't think doctors get this.

Often with methylation, less is more.

As an example, I'm taking 16mcg of methylcobalamin per day (divided into four smaller doses throughout the day). I've made some nice progress even on this tiny dose, such as detoxing all my mercury and curing my autoimmune thyroiditis. If I take more methylcobalamin, I feel bad from metal detox, so I'm keeping it low enough that I can still function - the metals are still coming out, even though I can't "feel" them.

 

[Gingergrrl]

@boo85

How much potassium per day are you taking now? Or planning on taking once you start B12 again? Are you taking l-methylfolate along with B12?

I am taking 20 meq of Potassium now (a prescription supplement) from when I was in the hospital. I am not planning to re-start the B-12 or folate again any time soon. I don't think my body is strong enough to do it right now.

This was only with 500mcg of cyano B12 in one day, by the way, so nothing like 7000mcg like you want to take. I think that's why it's a better idea to start low and go slow.

Just want to clarify that I only took that high dose of B-12 one time (a few months ago) and my doctor had actually wanted me to take 10 mg shot of B-12 so I was slowly raising it as I thought I was supposed to. I will never be doing this again.

I've also ordered hydroxy B12 lozenges from iherb which is another alternative to getting hydroxy B12 that isn't injections. I didn't even realise that you could get hydroxy B12 from another form other than injections before. According to Freddd, some people tolerate hydroxy B12 better because your body can take what it needs and use the hydroxy B12 at its own pace, but with cyano and methyl B12, it's kinda "forced" to make use of all that B12, at least that's how I interpreted what he said.

Have you tried hydroxy B12 before?

I have never tried hydroxy B12 before but am thinking this may be a better option for me in the future.

Oh, and make sure to thoroughly go through all of your vitamins, and check the label to see what is in each and every one. For example, I wasn't aware of this, but both my iron tablets contained between 10 - 50 mcg of cyano B12. You just wouldn't think to look for B12 in an iron tablet but there it is. So make sure to double check what you are taking because I got caught out by not knowing.

I realized that my Magnesium pills had all kind of other ingredients in them including methyl-folate. I ordered a new Magnesium with nothing else in it which should arrive tomorrow.

Also, my other advice would be to make a journal, or even use this thread to keep track of what you are taking and your symptoms. Try to write in your journal every day. It becomes harder over time to remember what you took and when, especially when your memory is affected by low B12, but if you have a journal you can read up with great detail your journey and connect the dots easier.

I keep a journal in a paper notebook which is easier for me than on the computer and keep it next to my bed. I started it when I started taking Famvir but also keep track of Midodrine, Atenolol and anything new that gets added. When I attempted the methylation supplements, I kept that in the journal, too. I agree with you that it is very helpful both for my memory and to track side effects and changing doses.