increase from 1250 to 1500 mb12 and really suffering

[Freddd]

Hi Fredd- Suzanne here.

I am taking 1250 mcg of mb12 ( raised the dose 14 dys ago and not sure if that is my problem with all my increased symptoms). So for now I have stopped the mb12 for a day or 2 to see what happens.

i have been taking 600mcg of m folate- 400mch in the douglas and 200mcg extra solgar brand.

I have been experimenting with between 5000-6000 mg of potassium (for over a week) but it doesnt seem to make any difference and I am in bad shape at the moment. I can describe that i feel very unwell with increased body itch, nausea, burning skin, clammy and headaches. I also feel drowsy and sort of clammy. just feel sick.

Any thoughts? Could it be the increased mb12 dose that has tipped me over the edge? i was only just tolerating my symtpms when i was taking 1250 and then i went to 1500- wasnt too bad for a week or so but now I just am over the top sick.

Hi Suzanne,

I would like to make a couple of comments here. A rise from 1000mcg to 1250mcg, as sublingual I assume?, is unlikely to make a noticable differene in most people. To have a gangbusters change becasue of that is unlikely. When we were doing the testing, 5 hypersensitives, and I was also doing the symptoms histories and single dose trials, most people could not tell the dofference between the 5 star 1mg and 5mg. The same people had the same reactions to both. Intensity wise they were so close to identical that it didn't seem to make anu difference. Where the difference showed up was when somebody had reached equilibrium on 1mg, 1 5 mg would have some startup again, and then 10mg over 5, and 15 over 10. But as far as an absolute difference, it made no real difference. I settled on the 1mg Jarrow for the many trials because they were the least expensive 5 star mb12. There was no reduction in response or response rate. In studies, both 120mcg and 1500mcg doses were effective, but 1500mcg was somewhat faster. That might have everything to do with the tissue penetration issue. SO dropping back to 1000mcg is no problem but I don't think that it will solve the problem.

I would also say that the dose of potassium is awfully high. It doesn't even seem in the same ball park as others are finding needed. I would be trying to damp down the system, to slow down fluctuations and keep it predictable.

When my whole system has gotten hopelessly unbalanced, as yours seems at the moment. The strategy I've used, that has always worked for me, is to cut back to basics, ie basic vitamins, minerals, fats (lecitinin and omega3). In the basic minerals, cut back any calcium, magnesium, zinc that are in excess of bascis and bring down the potassium rto perhaps 600mg a day and work from there. Also getting rid entirely of all special purpose things from yeast based vitamins, special food supplements, whey, chorella, glutatmine, chelating things etc. Sometimes in multi ingrediant pills, things kind of accumulate out of sight and out of control.

I'm not singling out any specific things here but rather all sorts of things that may have gotten out of balance and those things unnessary for normal functioning and all those things that could conceivably be causing known or suspeted problems, or where it's unknown combinations havong unexpected effects. It's sort of like an ellimination diet. SIMPLIFY. Then rebuild carefully after the things have had a suitable washout time. The glutathione, if you are even taking it or not, can have effects for quite a while after quitting it as an example. Too much calcium, especially out of balance, can be a major problem. The minerals tend to clear quickly. Just dropping back the potassium to 600mg will keep you out of severe trouble happening fast and not be enough to thow things off.

After things stabilize then examine what the remaining symptoms need. I would keep zinc no higher than 50mg at this time, get rid of the SAM-e, TMG, D-Ribose, mb12 at 1000 mcg, adb12 at 2500mcg each 3 days and mMetafolin at 800-1600mcg. This will allow these things to work well. Get rid of all folic acid and folinic acid for now until you know which way is up. If you are vegetarian, keep the l-carntine fumarate going as that is essential for healing in many people.

 

[Freddd]

This sounds reasonable but I still don't get then when glutathione is safe, especially if the body is supposed to make it? Are any supplemental levels safe? at some point? I apologize that I just don't grasp "technical" info so well.. Im more of a right brained person.

I have been told at least by folks using Hb12 that glutathione helps it get into cells. Is this accurate at all for Hb12?

I am not understanding why glutathione is supposed to be so good for the body would flush your b12 down the toilet an destroy you, basically. Does the body really need very litttle glutathione and we are really over taking the system with it? Is it excess glutathione that is combiming with the b12 to be flushed out?

I know with KPU, badly formed heme (simplistic explanation so probably off a little) takes B6 with it to the toilet which drags zinc along for the ride, but the heme is being disposed of and dragging these other guys with it in the process.. its not a beneficial substance at that point for the body..

why does glut combine with colbalmin in the first place.. is there a fucntion to that gone awry?

I have high b12 and Fa in blood.. I think I get the high serum FA means the FA is being kicked out of cells. Since I supplement especially, then I would have high levels in serum as opposed to someone who does not with paradoxical folate deficiency.

The high serum B12 would mean the b12 is either being kicked out of cells because... ? or not able to get in in the first place.. why? And becasue I supplement, I will have high serum, esp over someone who also has the genetic set up for this who does not supplement?

methyl folate leaves becasue there is no b12 there to meet it to perform a team function.. (simplistic right brain picture).. b12 cant get in or stay in becasue? (insert image)

(i am sorry if this is annoying.. I just can't get some kinds of info without an image to put in my brain)

Hi Soulfeast,

This sounds reasonable but I still don't get then when glutathione is safe, especially if the body is supposed to make it? Are any supplemental levels safe? at some point? I apologize that I just don't grasp "technical" info so well.. Im more of a right brained person.

After I described my experience and those of the other 9 in our trial a researcher said "I don't think that there is any safe way to take glutathione". I would have to agree.



I am not understanding why glutathione is supposed to be so good for the body would flush your b12 down the toilet an destroy you, basically. Does the body really need very litttle glutathione and we are really over taking the system with it? Is it excess glutathione that is combiming with the b12 to be flushed out?


I would have to agree. Mb12/adb12 and the kidneys treat the glutathione like a toxin, cyanide and nitrous oxid in particular, they are removing from the system.

why does glut combine with colbalmin in the first place.. is there a fucntion to that gone awry?

Pure chemistry, just like cyanide. There is no enzyme or ATP needed. It happens like falling off a log, when glutathione rises above a certain level.

I think I get the high serum FA means the FA is being kicked out of cells

Folic acid could be high becasue your body can't converrt it to methylfolate and it accumulates until it blocks the methylfolate. Without the methylfolate you can't use the b12 so it too could accumulate. But your "high" is still pretty low.

So to me it sounds like you need the active b12s and Metafolin so youyr body can use them.

 

[jen1177]

Hi, Suzanne,
Sorry you're feeling so bad...wish I could give you a hug.

Just have some thoughts here...your headaches might be migraines which could be being triggered by the"inactive" ingredients in the supplements you are taking. Sublinguals are notorious for having added flavorings which always give me migraines.

Also, just my opinion, but if I was on a protocol for six months and still felt as crappy as you do, I think I would quit the protocol. Or at least take a temporary break from it. You're not giving up if you just take a break.
Good luck.

 

[suzanne]

Thanks for a the input. Today is the second day of no methyl b12. I wasnot sure if this was the culprit- I increased it to 1500 mcg 2 weeks ago and started feeling really bad after a week- although, when i think about it headches, itch and nausea have been my worst symptoms all the way through- and at the 6 months mark this just feels too much.

So, with the symptoms not greatly relieved by stopping the m b12 it does suggest that something else is happening that I havent figured out yet.

I have just been reading up on methyl folate and i found some information that says if you go too quickly on this ( with an ill body or one with MTHFR mutations) then it can cause headaches, nausea and - itchy skin!

I am going to trial stpping this for a day and then reintroducing it at 200mcg a day rather than 600mcg and see if that helps.

I am inclined to do that first.

if that does not help then i will take the approach of going back to basics as fredd suggests. I dont take calcium, glutahtione, whey or NAC so no need to change there.

I would make the following changes:

Stop-

magnesium supplement
SAM-e
carotenall
reduce;
zinc from 100mg to 50 mg
patassium from 5000 to 600
m folate from 600mcg to 200mcg

maintain:

selenium 100 mcg
vitamin c 1000

Fingers crossed. I am hoping that the reduction of methyl folate may be accounting for my symtpoms, as then at least i will have smething to work with. Back to the drawing board- and thanks for all the suggestions. The reasoon i am persisting is that i am actually weller than i was before i started the protocol- even tho I feel god damn sick with headches and nausea and itch, at an underlying leel i have more wellness or energy- just ccant put it into words. But it is real- i compare myself now to when I went on a vacation 2 years ago and was almost bed bound . Now at least I get up every day, so i doont want to give up on the progress, een tho i feel pretty crook. I just have to work out what is happening and that may take some trial and error. At least know this is not potassium and it does not seem that this is all mb12 probelm as I thought.

Thanks for helping me to create a new game plan to put to the test
Suzanne

 

[suzanne]

Oh, and Jen,
Sending you a hug from very sunny, Western Australia to Arizona

 

[Freddd]

Thanks for a the input. Today is the second day of no methyl b12. I wasnot sure if this was the culprit- I increased it to 1500 mcg 2 weeks ago and started feeling really bad after a week- although, when i think about it headches, itch and nausea have been my worst symptoms all the way through- and at the 6 months mark this just feels too much.

So, with the symptoms not greatly relieved by stopping the m b12 it does suggest that something else is happening that I havent figured out yet.

I have just been reading up on methyl folate and i found some information that says if you go too quickly on this ( with an ill body or one with MTHFR mutations) then it can cause headaches, nausea and - itchy skin!

I am going to trial stpping this for a day and then reintroducing it at 200mcg a day rather than 600mcg and see if that helps.

I am inclined to do that first.

if that does not help then i will take the approach of going back to basics as fredd suggests. I dont take calcium, glutahtione, whey or NAC so no need to change there.

I would make the following changes:

Stop-

magnesium supplement
SAM-e
carotenall
reduce;
zinc from 100mg to 50 mg
patassium from 5000 to 600
m folate from 600mcg to 200mcg

maintain:

selenium 100 mcg
vitamin c 1000

Fingers crossed. I am hoping that the reduction of methyl folate may be accounting for my symtpoms, as then at least i will have smething to work with. Back to the drawing board- and thanks for all the suggestions. The reasoon i am persisting is that i am actually weller than i was before i started the protocol- even tho I feel god damn sick with headches and nausea and itch, at an underlying leel i have more wellness or energy- just ccant put it into words. But it is real- i compare myself now to when I went on a vacation 2 years ago and was almost bed bound . Now at least I get up every day, so i doont want to give up on the progress, een tho i feel pretty crook. I just have to work out what is happening and that may take some trial and error. At least know this is not potassium and it does not seem that this is all mb12 probelm as I thought.

Thanks for helping me to create a new game plan to put to the test
Suzanne

Hi Suzanne,

Those are not the symtoms of high Methyflolate. They do fit folate deficiency. Do you take folic acis and/or folinic acid? You do need calcium, but no more than 500mg typically. No calcium can be a problem. Also some magnesium is in order, but no megadoses on any of the things. Those are basics and a must have. Then an increase to 1600mcg on the Metafolin might be a better choice and decrease and hopefully remove the nausea and headaches. If the itching is neurological and it is becasue of healing you might be able to get rid of it by keeping healing going. There are too many possibilties on the itching. Is it inside or flakey skin for instance? It's important to seek towards balance , not run from it trowing other things off balance. You need to be sure to have fishoil A&D, capsules made from COD live oil generally but shark liver oil is good too. An 8 factor high gamma E is a good choice. Also, many find a Chromium GTF supplement can help. Consider having the all basics going. How is your blood sugar generally? Are you taking CoQ10? It can be a problem sometimes.

Did you mention what brand and how long under the lip? for the mb12. And what about adb12?

 

[suzanne]

HI Fredd

I am very appreciative about the advice on the basics. My dr had me taking 500mg of calcium and 250 of magnesium, so perhaps I wil put that back in place. He also had me on B6; 200 mg and P5P 40 mg. I have the A,C, E and zinc in place but will perhaps drop the ziinc from 100mg to 50 mg a day. I recently have forgotten to take fish oil but will add it back in. Is shark oil better than the salmon oil?

i will look into the 8 factor E- at the moment I take carlson brand combination of A,C,E.

I dont take Co q 10.

I take the mb12 under my lip. I havent added the adb12 yet as I have been having so many difficulties just adjusting to the mb12. in the first few days i started this protocol I did start with ad b12 and it caused me start up immediately with bad headaches and really bad tooth ache. i stopped that afte a few days and went with the methyl b 12- same start up symptoms but the aching teeth only lasted the first few weeks as i recollect. The starting dose of ad b12 I took was 2000mcg, in drop form under the tongue.

I currently take the mb12 under the lip and leave it for as long as it lasts- normally 30 minutes, if it lasts that long. I have noticed since I went to taking my dose in 500mg 3 times a day, it seems to cause more symptoms than when I take 250mg 5 times a day- perhaps I more sensitive to these changes than most?

Tonight, it is just over 48 hours sine i stopped the mb12 doses and I am more well ( less nausea and sick feeling) but my skin is burning badly and I still have a sick feeling headache. interesting, that since I have stopped the mb12 I have had no migraine- they have been occuring daily since Christmas.

I am going to experiment with the mb12 and m folate- it may be that i have to go slower or faster with eiher one. I think I will have to be systematic in trialling changes to each- one at a time- and then keep good diary notes about my responses. As you say, i am needing to go back to basics, try and stabilise adn then experiment some from there. I appreciate your input and attention. I now have some ideas from across this wonderful community about some possible ways forward- without feeling too scrambled and throwing out the baby with the bathwater.

I have to say, I a puzzled by the methyl folate and whetehr it is a player in all this. When I out my dose up from 400mcg a day to 800 mcg it caused me immense headache and nausea and I had to drop it back down again. perhap my body is very sensitive the start up that it promotes. I realise that others have said the m folate causes them difficulties- i have experimented enough with this dosage to really know if it is a culprit or not- I take it that your view is that that m folate needs to be taken at a dosage of 4\800mcg a day or higher? I also notice that the simplified protocol calls for 200mcg. I am just realising that all the supplements I have in place, including the 'powerhouse' ones, will all need to be part of my systematic approach to hunting down what is causing me to react so strongly still after 6 months. I a committed to finding out so that i might create a more tolerable healing pathway rather than dreading each day as it arrives. Sad, but true.

Oh, on the issue of itchy skin. It started after I was supplementing quite large doses of vitamin D (10,000 iu a day)- it stopped for awhile when I stopped the D. Then it started again ( 2 years ago now). I have never been able to tame it but things that promote detox mke the itching worse ( anti fungal supps, mercury chelation products, liver supplements of various kinds eg dandelion, artichoke, reishi) The type of itch is under the skin all over. Worse on my face and scalp but really an all over issue. I can no longer wear linen as it is too scratchy on my skin. loose cotton is all I can tolerate. No clothes is best but not very socially acceptable. Sigh and chuckle.

Thanks again, to all, and yourself Fredd.

 

[suzanne]

I meant to also add that the brand of methyl b12 is enzymatic.

No flaky skin, just itch under the skin.

i dont take any other forms of falte or folinic acid in anything.

It is more than 2 days snce i stopped the m b12- still taking the same dose of m folate. My nausea is really extreme tonight- and burning skin symptoms. I continue with the sick feeling headache but this is not a migraine- I can tell the difference. Odd that I havent triggered into migraine since i stopped the mb12- coincidence, not sure? My left hip is really aching and my tongue is a bit sore. Not much else to share. I feel better than 2 days ago when I was on the m b12 but still not back to my baseline. I am starting to wonder whether the dosage of both m b12 and m folate may both be playing a part in why i feel bad- just a thought as i know there are others that have had to go significantly slower than I have- and there are others that have been able to go significantly faster.

I will trial some experiments with the supplements, keep good notes and call out when I have some better insights, hopefully.

Suzanne

 

[Gavman]

As a large majority of headaches are caused by dehydration, could the b12 and folic acid be having a dehydrating effect? And if potassium is needed, isn't water required to mobilise it? Has anyone tried drinking decent quantities of water with their headache?

 

[gu3vara]

I increased from 2500 mcg of methyl B12 + 1000 mcg adb12 to 5000 mcg methylB12 + 1000 mcg adb12 two days ago and I also have the intense itching (under the skin, so neurological). I'm sure it has all to do with healing of nerves.

Sometimes I wonder if I should try a megadose of B12 (50 mg) to feed my CSF some B12 as I worry if those symptoms aren't exacerbated by brain damage from low b12. I definitely have more head buzzing, itching, tingling that before I started the protocol. On the other side, I'm worried I'll itch even more on this mega dose. :scared:

What is the odd of worsening b12 level in the brain by taking from 400 mcg to 1000 mcg methylfolate btw? Is it a real possibility?