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A week and a half after starting B12.... feel terrible!

Messages
40
HI there everybody,

So now on approximately my sixth post on this site asking for advice, so once again, thank you to anyone with the patience to respond.

Basically, I started taking vitamin B12 - Jarrow, 5000mcg last week, but I just feel really bad.
I've had intense back pain for maybe a week now, at the top of my spine, similar to the one I got when I quit gluten.
My muscles and limbs hurt - calf muscles, arms...
I just feel really kind of heavy, tired and tight? As though everything is an effort, I'm trying to finish my thesis but I feel like I just can't think... I'm distracted by the pain and tiredness... I don't know what's up.

I wrote last week after I think my potassium dropped right down. I had basically taken the B12, 400mg of folate (been taking that a few weeks), about 25mg of Niacin, and dipped my finger in the contents of a B6 capsule and licked it because the capsules are 100mg and the last time I took a full one I had a panic attack. Maybe I got about 20mg of B6 that time. I've also started taking Zinc, 30mg about a week ago, and I take calcium and magnesium at about 120% of the RDA. I haven't taken any B6 or Niacin since last Friday, when I got terrible leg cramps, lost sensation in my fingertips, got nauseas, dizzy and heart palpitations. I managed to stave it off by eating literally 10 bananas, but that night I woke up at 4am, ridiculously awake and didn't get to sleep until about 10pm the following night. I'm wondering if my current tiredness is the result of missing so much sleep that night.

Since then I've massively upped my potassium, I must be getting 4000-5000mgs a day now, I get 2000 at breakfast just from taking half a teaspoon of lo-salt in a glass of orange juice then a smoothie of 3 bananas. I eat high potassium foods throughout the day too, including tomatoes, tomato juice etc. I have felt much better since Friday, but I still feel an ache in my legs, like they wanna cramp but it's not that bad yet, plus just the aches and tiredness in the rest of me.

Ive also doubled the calcium + magnesium tablets after I pretty much didn't go to the bathroom for 2 weeks, which has only just started to improve.

Is it normal to feel so bad after starting B-12? I'm pretty sure I was deficient, as blood tests showed half the minimum platelet count, oversized red blood cells and a B12 level barely within healthy levels. I've been Vegan my entire life so I'm not sure I actually know how it should feel to be within normal B12 levels....

I also don't know why but I feel like I'm intuitively CRAVING minerals. I just want them, don't know why lol. I've been eating nuts and seeds to get selenium and manganese but they contain such low amounts :(

Will the pain go away soon?

Thanks in advance for anybody who has any tips.
 

caledonia

Senior Member
Basically it sounds like you're doing too much too fast. 5000mg of B12 right out of the box is a megadose.

Read my documents Start Low and Go Slow and Roadblocks to Successful Methylation Treatment for ideas.

Also the potassium from foods may not be absorbing, so you may not be getting as much potassium as you think.
 
Messages
40
Thank you Caledonia! I will download and read your document,
Is it the possible non-absorbtion of potassium causing the pain, then? Is there anything I can do to make the pain go away, short of taking less tomorrow? Thanks and all the best.
 

Mary

Moderator Resource
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17,321
Location
Southern California
@pumpkin - you could still be low in potassium. 4000 to 5000 mg a day is just the minimum daily requirement. When someone who is deficient in certain nutrients (e.g., B12 or folate) starts taking them, their potassium levels can tank quite badly because their bodies are suddenly starting to work the way they are supposed to and this can require a lot of potassium, more than the daily RDA. It might not be possible to get enough potassium from food, at least right now.

Low potassium can explain the leg cramps, palpitations, heaviness etc. You may have to use a potassium supplement. Many here do. The main thing is to titrate up slowly. Don't take a huge amount all at once, maybe 100 or 200 mg. a couple of times a day, working up gradually until your symptoms abate. You can buy potassium in any health food store, or on-line. I use potassium gluconate. I originally tried potassium citrate but it irritated my bladder and contributed to a UTI.
 
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40
Thank you once again Mary, I've had yet another triple banana smoothie and feel somewhat better, back pain has actually gone finally!

I'm a little confused though as to how supplementing with 200mg would help more than food sources when a single banana has about 500mg or something, Caledonia said it might be an absorption issue... I do have terrible digestion... are the supplements-form potassium more easily absorbed then? Thank you! You are all very patient generous beings :)
 

Mary

Moderator Resource
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Location
Southern California
@pumpkin - I'm not saying stop the bananas. I'm saying you may not be getting enough potassium in all the foods you are eating. Again, the 4000 to 5000 mg. you're getting in food is great, but it's only the daily minimum requirement. So keep on eating your bananas, etc., but I think it's very possible you need even more potassium than the daily minimum requirement, more than you can get in food alone. Don't stop your bananas! I think you would be even worse off without them.

So I'm suggesting you take a potassium supplement in ADDITION to your foods. But again, go slow.

I think you mentioned you had been a life-long vegan? So you may be very deficient in B12, and that would cause your potassium requirements to be even greater, because your body would be trying to so hard to use the B12 you've started.

Here's an article on refeeding syndrome - it talks about various imbalances that can occur when people who are malnourished start to get proper nourishment. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/
If you scroll down, you'll see a section on potassium. I believe that this increased need for potassium so many experience when starting B12 and folate is a form of refeeding syndrome.

Just a little tip - when you reply to someone, it's helpful if you tag them using their name with the "@" sign in front - e.g., "@pumpkin" or "@Mary", and that way they will get an alert when you post your reply. :)
 
Last edited:

alicec

Senior Member
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Location
Australia
As well as starting with too much B12, you may not have enough folate. This can cause muscle aches also.

Like potassium, folate intake might need to be adjusted upwards when you start taking B12.
 
Messages
40
Hi again @Mary, thanks for that tagging tip, I had no idea how to do it :) and thank you so much for the refeeding document. Basically aside from being Vegan since I was born after finding out i have Autism Spectrum Disorder I cut out loads of foods... anything with gluten or high oxylates.. soya... I'm realising now how restricted my diet has become because when I google sources of phosphorous and magnesium, I realise I no longer eat anything on the list, which may explain the reaction. You may have helped me out big time with that document. I will work on getting all the minerals, and I've bought some potassium.

@alicec thank you too for that pointer, I will try and balance the B12/folate, Fingers crossed this does it! Theres only so many bananas a girl can eat in one day! :) Have a nice evening everybody. Tomorrow's a new day with the vitamins :)
 

caledonia

Senior Member
Thank you Caledonia! I will download and read your document,
Is it the possible non-absorbtion of potassium causing the pain, then? Is there anything I can do to make the pain go away, short of taking less tomorrow? Thanks and all the best.

Assuming the pain is from muscle cramps from low potassium, here's what I suggest for the quickest resolution:
Stop taking both folate and B12
Take the nicotinic acid form of niacin in a low dose on a frequent basis to slow methylation
Use a potassium supplement instead of trying to get potassium from food

When you start up methylation, if you have physical debilitation, the body will start cell rebuilding, and that requires potassium. If you're doing megadoses of folate and/or B12, that will crank up the methylation cycle quickly and you can get into potassium deficiency quickly.

So the way to get out of it is stop feeding methylation by stopping the B vitamins, then slow it down with the niacin which eats up methyl groups. Then do enough potassium in a supplement form to take care of the deficiency.

The methylation cycle may keep cranking on it's own for quite some time even without inputs. So even with putting the brakes on with several doses of niacin per day, it may take days, or weeks to get it slowed down. Without niacin, it could be weeks or months.

See the documents I suggested for more details on how to dose the niacin.

Then when you're back to baseline, you can restart the B vitamins, but take it easy next time. I have tips for that too.

Good luck.
 

Mary

Moderator Resource
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Location
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Hi @pumpkin - at one time I had a problem with low phosphorous (I forget how it happened but it happened!) Anyways, I found that dairy products like yogurt and kefir were very high in phosphorus, as well as pumpkin seeds and sunflower seeds. Milk may be high too but I don't drink milk. Anyways, I now have kefir 3 or 4 days a week and I now eat sunflower seeds daily - the kind with the shells so I can't OD on them - am hooked on them actually but it's not a bad thing. I think they're also a good source of magnesium, but I also take a magnesium supplement as well.

Caldedonia makes some very good points in her above post too --

Good luck with everything! :thumbsup:
 

Jimbo39

Senior Member
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405
Location
San Deigo, CA
@pumpkin Im not trying to steal your thread but I'm getting ready to start a B protocol as well and maybe these questions to @alicec and @Mary may be beneficial to both of us. So from what I've read, certain supports need to be in place. Potassium and Mg. How much? Is there anything else we should take before starting?
 

Mary

Moderator Resource
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@Jimbo39 - Freddd talks about supplements to have in place when starting his protocol here: http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/
There may be more recent posts on this, I don't know, but he gives what he considers to be the basics.

Re magnesium: I've been taking a magnesium supplement for many years (magnesium glycinate) and starting the methylation protocol did not seem to affect my magnesium levels. I don't know what, if anything, would have happened re my magnesium levels if I had not already been taking magnesium. I take about 530 mg. of magnesium glycinate a day, in divided doses.

Potassium was a completely different story for me. I didn't know anything about potassium before I started taking methylfolate (had already been taking MB12 for years). The methylfolate boosted my energy markedly within a day for about 2 days, and within a day or 2 after that, I got hit with severe fatigue, which I was able to recognize as low potassium because of Freddd's post. Other common symptoms are muscle twitches or spasms, palpitations - you can read about it. Anyways, after the fatigue hit, I started taking potassium, I think I took probably 400 - 600 the first day (in divided doses) and titrated up to 1000 mg by the 3rd day, at which time the fatigue started to abate. So I went slowly, and found the dose that worked for me. I eventually learned that I had to take (and still take) extra potassium every day. I think it's extremely common with ME/CFS to have low potassium, undiagnosed. I had had that severe fatigue on occasion before starting the methylfolate, but never knew what it was. And my potassium always tested normal, albeit the low side of normal. I currently take 700 -800 mg. potassium glycinate (in divided doses) plus 1 or 2 glasses of low-sodium V8, in addition to whatever potassium I get in my food. Some people on this board take much more, and some don't need it. ANd sometimes I still get low potassium symptoms - primarily muscle twitching in my feet or legs and I know I need more V8 or more of my supplement. I could not get all I need from food.

So all I can tell you is what I did. I believe the refeeding article above talks about low potassium symptoms tending to hit around 3 days after you start refeeding, and that's what happened to me with the methylfolate.
 

Jimbo39

Senior Member
Messages
405
Location
San Deigo, CA
Freddd talks about supplements to have in place when starting his protocol her

Yes, I remember it now. Its been 2 months since I read it. I had to ask myself why I'm taking so long to start. I think it's because of an adverse reaction to IV Bs.

And my potassium always tested normal, albeit the low side of normal.

My RBCs showed potassium level at 3,218(2,220-3,626 mcg/g) but I still feel deficient (twitching limbs,etc). Could it be that other min/Vit are needed for it to be utilized properly?
 

Jimbo39

Senior Member
Messages
405
Location
San Deigo, CA
Read my documents Start Low and Go Slow and Roadblocks to Successful Methylation Treatment for ideas.

Very helpful read. So niacin is needed to keep from over methylation?

I've been waking up at nights with a pounding heart. I just chalked it down to cortisol surges.

My daughter swears by NAET. I've always felt it was kinda weird but will look into it further.

Re: SSRIs. I've been polydrugged for 20 years (gabapentin, Valium, Paxil, hydrocodone). I personally feel they are a hinderance to healing. No longer on hydro. Have tapered V. to 3 mg, and Paxil to 20.

Also the potassium from foods may not be absorbing, so you may not be getting as much potassium as you think.

I wonder why this is. Dysbiosis?
 

Mary

Moderator Resource
Messages
17,321
Location
Southern California
My RBCs showed potassium level at 3,218(2,220-3,626 mcg/g) but I still feel deficient (twitching limbs,etc). Could it be that other min/Vit are needed for it to be utilized properly?

I don't know. I believe I have a problem utilizing potassium, which is why I have to take extra. It's not an uncommon problem in people with ME/CFS. I do take a ton of other supplements - minerals, vitamins etc. So I just take my extra potassium and it works.
 
Messages
40
Don't worry @Jimbo39 ! To be honest it's kind of helpful hearing your experiences as well, I too have been waking up at night/not falling asleep with a pounding heart and it's terrifying so it reassured me greatly to hear I'm not the onyl one and that you're ok :)

@Mary and @caledonia I'm sorry if I've been a complete pain with all my questions. Thank you once again for both your advice on the other thread. I've followed all your advice. Today I didn't take any vitamins except D3 and magnesium and Calcium. I took about 2500mg of potassium this morning via 4-banana smoothie, orange juice etc, after the nicotinic acid last night my heart finally calmed down but for some reason around 3pm today I started to get full on cramps and felt like a tight band was closing around my heart. I immediately started taking tomato juice with half a teaspoon of lo-salt... more orange juice.. eating bananas, plus about 600mg of potassium via supplements... I took more nicotinic acid (so 100mg so far today).... nothing was helping. I really feel I'm getting up to 5000/6000mg of potassium and still struggling with cramps/heart issues.

I eventually realised tonight my magnesium was the crappy magnesium oxide kind so wondered if it was partly that, went out and bought some magnesium citrate, took that and ate 4 bananas and finally things have calmed down. Oh and the nicotinic acid totally calmed me down and gave me the giggles! which was great :) So Jimbo maybe just check you've got a good magnesium too.

Good night everybody, I'll try not to bother anybody the near future unless it's an emergency :)
 
Messages
98
Basically it sounds like you're doing too much too fast. 5000mg of B12 right out of the box is a megadose.

Read my documents Start Low and Go Slow and Roadblocks to Successful Methylation Treatment for ideas.
@caledonia I have been sick with runny nose, congestion, water eyes, headaches since Sunday and reading this post prompted me to read your Roadblocks to Successful Methylation Treatment. That made me think possible Paradoxical Folate Deficiency, but there are several other things that seem much more likely (see list below). I have never had PFD in 10 months on Freddd's Protocol, and in the past few months I only have very minor symptoms, if any, when I increase dosages. Just wanted to get your opinion. Hope you can help!

I am currently taking total per day: Solgar MF 3,800mcg, Enzy MB 9,000mcg, AD 3,000mcg (can only tolerate Source Naturals), Dr's Best LCF 1,000mg. I take the MF and MB 3x/day, LCF 2x/day on empty stomach, all in divided doses, and AD 1x/day with my pm MB dose.

There are several different things that occurred on Sunday that could have triggered these symptoms, which makes it very difficult to know which one it is:

1. I got a new chest freezer that had a lot of chemical/new smells that dissipated somewhat after cleaning with baking soda and water. I am chemically sensitive, so this was a bit of a concern. On Sunday I ate food from the new freezer for the first time (food that doesn't usually bother me), and the congestion started shortly thereafter. At first I thought it must be from the freezer smells getting in the food, because of the timing and also because the other things I did that day (listed below) didn't seem that drastic. I decided to just try to adapt to the new freezer, which I often can do to new things after awhile, as the symptoms weren't so bad at that point.

I do want to add that I did not get the symptoms when I was cleaning the freezer, and and while I may have had similar symptoms from food or chemicals in the past, they are not usually to this extent. The symptoms would usually be milder and pass quickly.

2. I believe it was after I ate the food, but I'm not sure if before or after the symptoms started, I decided to try adding in a 30mg Solgar zinc citrate capsule. That was already in my game plan for the day, because it was the one missing essential nutrient that I had not been able to tolerate in the first several months of FP (other than the 15mg of zinc picolinate in a multi I have taken for years), so I wanted to try it again since I had been doing better on the protocol. When I had tried taking separate 20-50mg of zinc picolinate or zinc citrate previously, I had side effects like either an upset stomach or intense burning in my mouth/tongue, which is a common symptom for me.

I was amazed that I had no symptoms after I took it except for very slight tongue burn, which is not unusual for me. That made me think I must be getting better. I wish I could remember exactly when I took the zinc, but I think it would've been unusual for me to take it on an empty stomach before I ate. Yet it seems even more incredulous that I didn't postpone the zinc if I was already having symptoms.

I continued taking it every morning since (except for today), but I also continued eating the new freezer food daily, and my symptoms slowly worsened over the next few days. I do want to add that another reason I wanted to try extra zinc, was after reading a post from @ahmo about pyroluria, I took a questionnaire that showed me as being borderline. So I figured I'd try adding zinc first and then go from there.

3. For some dumb reason, I decided to also modify my PM dose of MB and AD on Sunday several hours after the congestion and headache already started. @Freddd and @ahmo both take their AD away from MB, although they take AD once a week, not once a day like I do. I cannot tolerate a large enough dose to take a big dose once a week. I decided to reduce my recent pm MB increase of 250mcg and do an AD increase of 1,000mcg instead, with the idea that I would slowly increase the AD dose while slowly decreasing the pm MB, in an effort to eventually take them away from each other. I have since read posts that people who take AD every day take it with MB, so I guess I did that for nothing. This is such a small adjustment on the MB side that I didn't think it would be a big deal, and surprisingly the increase of AD did not seem to bother me. I actually had a little more energy the next day, without the usual neurological and tight chest symptoms I get when I take too much AD.

Since I did this modification after the congestion/headache symptoms already started, I am only mentioning it because it might have added cumulatively to the symptoms getting worse over the next few days. It's usually pretty important that I take enough MB in ratio to MF, or I get a mild histamine reaction, usually watery eyes. I know you recommend nicotine, but previously @ahmo told me that extra MB decreased her histamine reactions, and sure enough just an extra 250mcg of MB will decrease mine. I usually end up adding it into the protocol as an increase whenever I increase MF.

4. Yet again not the smartest move, but yesterday I went 45 min to town for every 2 weeks shopping/errands and to get my highlights done (which I have done every couple months for many years). I know highlights are not the best thing to do when you're chemically sensitive, but it's worth it, as any symptoms are usually mild and don't last long. I also overexerted myself with the shopping/errands and felt exhausted from the heat.

When I woke up this morning, I felt terrible, like I was really coming down with a terrible cold! Congestion and watery eyes were much worse and my throat hurt too. I feel a little better as the day has gone on, but now I'm wondering if I really did catch a cold, and maybe it wasn't allergies or something to do with my protocol after all. It seems so unlikely that I could've caught a virus, because prior to Sunday, I had not had direct contact with anyone for 8 days. The only other possibility is that there was some virus/germs on my mail, and I did hear there was a bad cold going around.

Lastly it made me wonder if it could be Paradoxical Folate Deficiency because it matches those symptoms. However I don't feel like I did anything to set that off. I know this is all very confusing, and I have definitely learned a lesson about never doing more than one new thing at a time. I think I just got a little cocky, since I have started feeling a little better on FP. So far I am temporarily stopping the zinc citrate just in case, but I'm not sure what to do about my AD/MB doses tonight. Thank you very much for your thoughts on all of this!
 

alicec

Senior Member
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1,572
Location
Australia
Lastly it made me wonder if it could be Paradoxical Folate Deficiency because it matches those symptoms

It's easy enough to put that to the test. Just take a decent dose of methylfolate every couple of hours and see if the symptoms subside.
 

caledonia

Senior Member
Very helpful read. So niacin is needed to keep from over methylation?

Yes, it can either be used for those with COMT mutations who are sensitive to methyl supplements, or used in case you happen to get over methylated while trying to find a good dose.

I've been waking up at nights with a pounding heart. I just chalked it down to cortisol surges.
Could be low potassium or magnesium.

My daughter swears by NAET. I've always felt it was kinda weird but will look into it further.
NAET is supposed to be good for clearing various allergies, such as food allergies. I haven't tried this, but have had other energy therapies - EMDR, EFT and healing touch therapy - be helpful.

Re: SSRIs. I've been polydrugged for 20 years (gabapentin, Valium, Paxil, hydrocodone). I personally feel they are a hinderance to healing. No longer on hydro. Have tapered V. to 3 mg, and Paxil to 20.

Congratulations on your progress so far. Check out the Surviving Antidepressants forum for how to taper. I'm almost 4 years into a hopefully 5 year taper from Zoloft. A Valium and Paxil taper at those doses - maybe about 6 months to a year for each? depending on how fast you can reduce dose. I have to wait 8 weeks between reductions for Zoloft. Some people can do 3 weeks for SSRI's. I did a couple weeks between reductions for benzos.

(not absorbing potassium from food)

I wonder why this is. Dysbiosis?

Could be dysbiosis, but mine is cleared and I still have issues. Maybe something in the cycles that process protein, carbs and fat from food. I'm not really sure.