High dose of methylcobalamin without folate ?

[daniariete2000]

Hi,

I read suggested protocols for peripheral neurophaty as I have with high dose of methylcobalamin even in injections but without methylfolates..

What will happen if I would do like this ?

Ok .. I will not boost my methylation..but maybe could I try to regenerate my nerves without problem of methylation detox symptoms ?

Thanks

Daniele

 

[daniariete2000]

@Fredd , can you help me ? Can I try just very high dose of methylcobalamin without methylfolate at the beginning ? What happen ?

Thanks

 

[PeterPositive]

It's not mandatory to take folate with B12. Usually it is a good idea, but if the objective of the therapy is restoring a significant B12 deficiency you can take B12 alone.

Of course in the long run just using high doses of B12 without supporting any of the other Bs may not be a good idea, but you can ask your doctor about this, and maybe you can check your status of the other B vits via some lab tests.

Also, I am not sure why would you necessarily expect "methylation detox" symptoms. Have you already tried the B12/folate combo?

cheers

 

[daniariete2000]

Yes I tried and now I have high neurologic pain to my nerves but really can'y understand if is becouse of methylation therapy. I took 1 mg methylcobalamin, 2 mg of adelcobalamyn and 800 / 12000 mg methylfolate/day since 1 month Methylfolate I take is inside B complex from Pure encapsulation. I can't understand if I don't feel good becouse of this becouse I have frequent this attack of fibromyalgia/nerve pain.

I think only high dose of B12 can try to restore my nerves,. I read lot of research about this so I would like to try but without overdrive methylation too much to prevent bad symptoms.

I made some health diagnostic tests before theraphy and this is the results :

AMINOACIDS IN PLASMA
Nitrotyrosine 22.4 µg/l 1.1 - 6.8
Glutathione (oxidised) 0.54 µmol/L 0.16 - 0.50
Glutathione (reduced) 3.0 µmol/L 3.8 - 5.5
MISCELLANEOUS
NO (Nitric oxide) 92.5 ng/mL 18.0 - 35.0
Derivates
S-Adenosylmethionine (RBC) 223 µmol/dl 221 - 256
S-Adenosylhomocysteine (RBC) 51.0 µmol/dl 38.0 - 49.0
FOLIC ACID DERIVATES
5-CH3-THF 11.7 nmol/l 8.4 - 72.6
10-Formyl-THF 1.5 nmol/l 1.5 - 8.2
5-Formyl-THF 4.00 nmol/l 1.20 - 11.70
THF 0.55 nmol/l 0.60 - 6.80
Folic Acid 18.3 nmol/l 8.9 - 24.6
Folinic Acid (WB) 20.6 nmol/l 9.0 - 35.5
Active folate (RBC) 326 nmol/l 400 - 1500
NUCLEOSIDE
Adenosine 25.4 10^-8 M 16.8 - 21.4
ENDOCRINOLOGY (URINE)
Growthhormone 3.34 ng/24h 2.00 - 10.00

 

[PeterPositive]

Judging from your folate levels it looks you indeed lack some B12.
The methylfolate (5-CH3-THF) is in range, while THF is not, meaning that the methionine synthase cycle is running slow. A symptom of B12 deficiency.

1200mg methylfolate is a pretty high dose to get started with. Standard recommendations are to start with 100-200mcg. That might have caused unpleasant symptoms.

I don't see any particular problem in taking high dose B12 without folate, at least for a short period of time, say 2-4 weeks, and see if you find improvements.

Don't let anxiety take control. It's of no use to start with megadoses. Start with whatever amount you know it doesn't hurt. Even if it is relatively low, don't worry. You can then slowly increase it and see what happens.

The most common error is to start immediately with a high dose (of whatever supplement), get scared by a bad reaction, and ditch the supplement for good.

Good luck

 

[daniariete2000]

Thank you very very much for your suggestions..

Do you think have i to be scared about permanent symptoms of overmethylation ? Now i stopped everythings...

If i deceide to start with only mega dose of B12, do you think i can start with tablet of 5 mg of methylcobalamin 1/day and then increase till 3/days and then add gradually the same dose of adelcobalamyn and after when 30 mg is reached i will add 200 mcg of methylfolate ?

Thanks

Daniele

 

[daniariete2000]

P.S.

This is result of methylcobalamin testes in plasma by heathdiagnostocs in 2012

Methyl cobalamine 127 pmol/l [95 - 500]

maybe is little low....

 

[PeterPositive]

Thank you very very much for your suggestions..
Do you think have i to be scared about permanent symptoms of overmethylation ? Now i stopped everythings...

I have never heard of permanent symptoms of "overmethylation", whatever that means.

I am not sure what the term really means. We have discussed it on the forum many times, everyone has his own opinion. Personally I don't believe there is such thing, at least not in the way it is described.

I would simply call them adverse reactions to methyl-supplements. I have had those as well: extra anxiety, jittery feeling, a couple of times really bad adrenaline rushes... etc... not very funny.

It's not really that my methylation was running faster, in fact I did a test at the time that showed I had very very bad methylation. It was probably due to restarting some pathways that had been sleeping for years.

If i deceide to start with only mega dose of B12, do you think i can start with tablet of 5 mg of methylcobalamin 1/day and then increase till 3/days and then add gradually the same dose of adelcobalamyn and after when 30 mg is reached i will add 200 mcg of methylfolate ?

Sorry, I need to reiterate. The words start and mega dose, shouldn't be in the same sentence
Unless you have a critical B12 deficiency confirmed by lab tests, why would you start with a "megadose" and risk side effects? Even minor ones?

If you're doing this alone, with no medical guidance, at least be sure to stay on the safe side.

5mg of sublingual Methyl-B12 would have sent me to the hospital with a panic attack two years ago. Injections are even stronger. Now I can take twice as much and it helps. It has taken me 2 years of slowly adding up a little more, very slowly.

Be gentle and gradual and you will likely benefit from this.

Since you already have taken methyl supplements and have had bad reactions, why risking again? Start with a low dose. If you're unsure, start at 100-200mcg. See what happens and add more slowly, don't just double the dose on every update

30mg of Adeno-B12 is a horse like dose. Plus adeno B12 is not a priority as Methy-B12, if you're looking into helping a neuropathy Methyl-B12 is the most important, and it will convert to Adeno-B12 as well.

Keep it cool

 

[daniariete2000]

The problem is that the research expecially Japanis trials, showed that for healing peripheral neuropaty it needs 40 mg of methylcobalamyn (they don't speak about methylfolates) and if I start with 1 mg I will take 1 year to reach 40 mg...

 

[PeterPositive]

Not necessarily. You can start with 1mg and if it's all fine, add 1 more, and 1 more ... with 1mg increments you should be relatively safe in terms of side effects.

Sure, B12 is possibly the most safe supplement on earth, but if you have CFS/ME you might be overly sensitive to megadoses of any supplement, B12 included, as many people are in here.

Also talking to a physician would probably be a good idea, there might be other remedies beyond B12 that you may need to improve your neuropathy. (ALA?)
He may also prescribe B12 shots once you reach a certain high dosage. Taking 40mg from oral tablets is hard, you have to keep sucking candies all day

 

[PennyIA]

I will state that I learned about methylcobalamin before I fully understood MTHFR and mehtylation - and was taking it because taking cyanocobalamin made me feel ill. I was up to 20 mg per day with no ill effect, BUT while it did improve my energy levels to a certain degree, adding more did not improve my energy levels beyond the 20, it was very costly... and I still had peripheral neuropathy at the time (of course, I also had undiagnosed b6 toxicity).

I stopped taking the b6, was still taking mega doses of methylcobalamin and it wasn't until I started methylfolate and ramping it up that my peripheral neuropathy cleared up. Now, obviously B6 toxicity is rare and doesn't apply to everyone. But I would think that if you try it and it doesn't seem to help? You might want to get the rest of methylation ramped up to see if it makes a difference. FWIW when my neuropathy cleared up, I was only taking around 10 mg of methylcobalamin.

 

[daniariete2000]

Thank you Penny, your experience is very precious for me. So you started metylfolate with 20 mg of methylcobalamin inside.....
and how slow did you reach 20 mg ? And after, in witch way you started methylfolate and how slow did you increase it and till witch dose ?
Thanks a lot

Daniele

 

[PeterPositive]

I stopped taking the b6, was still taking mega doses of methylcobalamin and it wasn't until I started methylfolate and ramping it up that my peripheral neuropathy cleared up.

It's interesting that your neuropathy cleared up with 1/4 of the dosage of Methyl-B12 used in the Japanese studies. Might be an interesting piece of the puzzle that is missing in that study.

B12 and folate are so necessary to each other. If there's a methylation block you can gulp B12 by the bucketload and still not get the proper effect.

 

[PennyIA]

I had started methylcobalamin before finding Phoenix Rising and all the experts here. I was taking 5mg of it per day without even trying to take a smaller dose first. It helped, but it helped only a little - doubled it to 10mg, which helped more... thought - geez, maybe this is the answer! Went to 15mg which helped more... went to 20 mg which helped even more - all within about six weeks start to finish. And I did try 25 mg - but with no improvement and still felt I was hitting a fatigue-wall... so it seemed like I was missing something. I dropped back to 20 mg and stuck with it until I heard about methylfolate.

Tried 5 mg of methylfolate right off the bat - and that was bad.

Learned more and started with 2mg of methylfolate - not too bad, a little pick up in energy.

Slowly ramped up about 1 mg at a time...when I started hitting around 5mg of methylfolate per day, I was running low on methylcobalamin, plus this was all starting to get a bit expensive... and I found that I could drop down to 10mg of methylcobalamin without degrading my energy levels.

But I still wasn't seeing dramatic improvements like I've read. Go low and start slow is all well and good, but I was kind of tired of not feeling well.

Started seeing a methylation expert (well, ish - I'm now learning more than I think he knows) and he's the one who pushed me to really ramp up methylation now. I went to 10mg, then a week later to 15mg of methylfolate which brought about my best remission period, with the least PEM than I have experienced - for over a decade.

But I still crashed... now, he did not have me ramp up methylcobalamin at the same time... which might be part of the problem. if the rough rule of thumb is double the methylfolate dose - then I should have gone to 30mg of methylcobalamin.

AND while he is having me take several other supplements, two of them are on the deadlock quartet list... he did not have me add adenocobalamin, the fourth one. I've tried adding it on my own, but Thorne B12 mix seems to not sit well with me - not sure if there's something in it I'm having a bad reaction to, or what... but I was thinking I needed to up my B12 and get some adenocobalamin in; and I thought it was a good option... and I might have to dig deeper.

When I had my crash this summer I was having some unusual symptoms that *MAY* link to a rare form of EDS but is totally undiagnosed right now (and I'm on a 12-24 month waiting list for the geneticist). And because I seemed to be having a bad reaction to the supplements (maybe), I stopped all supplements for about 8 weeks.

The crash started to alleviate, but the 'reaction' has continued (I have between 8 and 60 small, firm lumps forming under my skin, then disappearing and re-forming daily - they aren't hives, they aren't a rash... they are subcutaneous firm nodules that can be felt and actually move under pressure).

So, now I'm debating if it just was all bad timing and who knows what all is going on. I'm starting on the supplements again and if the 'reaction' doesn't worsen then we know for sure that it's unlikely to be the supplements. I don't want to start looking for a new B12 source nor dose until I've ruled it out. But when I started back up, I started up a little faster now that I know I can tolerate a certain dose and have only been back on supplements for about six weeks and am almost back up to the dose I was on before I crashed.

 

[PennyIA]

It's interesting that your neuropathy cleared up with 1/4 of the dosage of Methyl-B12 used in the Japanese studies. Might be an interesting piece of the puzzle that is missing in that study.

B12 and folate are so necessary to each other. If there's a methylation block you can gulp B12 by the bucketload and still not get the proper effect.

You know... I started off with the Pernicious Anemia group over in the UK and while I learned a lot about B12 and all that, I have to wonder how many people are getting diagnosed with it really need to get tested for MTHFR... I keep reading how they have to have mega doses, how the methylcobalamin works better for them than the cyanocobalamin injections, etc... and I just wish I had millions of dollars at my disposal to push testing into this and ME studies... I think that while folks dismiss MTHFR all the time? That there is so much more to it than we know and it will help more people than we realize.

 

[Sundancer]

I will state that I learned about methylcobalamin before I fully understood MTHFR and mehtylation - and was taking it because taking cyanocobalamin made me feel ill. I was up to 20 mg per day with no ill effect, BUT while it did improve my energy levels to a certain degree, adding more did not improve my energy levels beyond the 20, it was very costly... and I still had peripheral neuropathy at the time (of course, I also had undiagnosed b6 toxicity).

I stopped taking the b6, was still taking mega doses of methylcobalamin and it wasn't until I started methylfolate and ramping it up that my peripheral neuropathy cleared up. Now, obviously B6 toxicity is rare and doesn't apply to everyone. But I would think that if you try it and it doesn't seem to help? You might want to get the rest of methylation ramped up to see if it makes a difference. FWIW when my neuropathy cleared up, I was only taking around 10 mg of methylcobalamin.

I'm struggling with same here, and unsure what to do. tingling of hands started 5 or 6 years ago. Nobody took heed. Then one and a half year ago new GP did take heed and did blood-tests. B6 too high. So stopped taking multi and changed to several different sups for the other B's. Bloodlevels did lower a bit but not nearly enough.

then about a year ago i started with methylcobalamine lozenges. From that moment on i slowly started to feel a little better and B6 levels started to lower quickly and by now the B6 has ( probably) normalized. get new tests-results next week.

but...since I started taking b12, my hands have become worse. I've lost the feeling in the skin, flies walk around and I see them, but don't feel them.

Now one doc tells me I should take high doses of folate, and the other says, as long as you're deficient in B12 ( or not sufficiently dosed) you should not take folate. I had 400mcg folate for years now and bloodlevels are out of range. GP is useless, he does not believe that I need such high doses of b12

I get bad histamine flares from methyl, now switched to higher dosed hydroxy (as step up to injections, as I did find a doc that will prescribe them) Gave very bad histamine flare. needed prescription-medicine to get it under control. But after 3 days it was clear that my body cannot handle that medicine.

So, now I take hydroxy once every third day, with one of these antihistamine-pills and it goes well, I do feel better and have more energy. The amount is probably about half of a hydroxy-injection. I plan to again slowly up the dose and then switch to injection ( prescription, so no more money for that.)

but now struggling with the folate question.

for now I have stopped taking it and plan to see whether I feel any difference in the next 4 to 6 weeks.

from what I understand the difference is whether you want to tackle a real deficiency ( and I really suspect that is the case) or a methylation-problem ( which probably is also the case)

 

[PennyIA]

I want to say that there's a lot of evidence that taking folate can mask further issues with b12 deficiency. And so that's probably one of the reasons the doctor doesn't want you to ramp it up.

In the final end? The thing that helped me the most with the parenthesia was epsom baths. They are pretty low risk. It took a couple of months of taking them... but I regained all sensation. My b6 levels showed normal many years before I got rid of the sensations - so it wasn't strictly my supplement usage (though it does seem the methylfolate helped some).