Methylation problem - difficulty sustaining MTHF benefits

[crowquill]

Hello all

I have the A1298C methylation mutation and initially responded well to taking MTHF, with improving energy and muscle strength. However, this effect only lasted for six weeks and staying on MTHF made no difference. My trajectory of illness over the last year has been downwards and this continued once the MTHF effect had worn off.

On the advice of my practitioner (an ND in the UK) I stopped all MTHF and then restarted it three weeks later. Again I had a positive result although this was shorter lived than previously (about a week). Since then I have experiemented with stopping for a week then restarting and ten days then restarting. Neither of these have had an effect when MTHF was restarted. I guess I could try a three week break again although really don't want to continue downwards for that long as am already bedbound and really struggling to cope even with that.

The hypothesis of my practitioner and I is that there is some limiting factor which the MTHF uses up and then stops working. What this could be I don't know. There may be other explanations. It doesn't seem to be methyl trapping or side-effects of MTHF as losing the effectiveness takes me back to pre-MTHF symptomology with no additional symptoms.

Other supplementation I take (mostly in divided doses) is:

Thorne Trace minerals
Magnesium bisglycinate (600mg per day)
L-carnitine (5g per day)
Ubiquinol (200mg daily)
Pantothenic Acid (1.5g daily)
P-5-P (100mg daily)
Niacinamide (3g daily)
Thorne Basic Nutrients III (6 capsules daily when taking MTHF as contains small amounts of MTHF so not taken when stopping the methyl).

I was taking Phosphatidyl serine (200 mg daily) as Dr Yasko suggested this might shortcut the methylation cycle but noticed no benefit so stopped.

Any suggestions are gratefully received. Ask if more information is required.

Thanks
Andy

 

[PeterPositive]

Hi,
niacinamide is known to be a methyl-group sponge. Are you really taking 3 grams a day? It is a massive dose, and it sounds like it could definitely slow down your methylation.

Have you tried stopping it for some time?

Just a thought.
cheers

 

[crowquill]

Thank you. That is definitely worth considering. Will talk to my practitioner.

Really appreciate the comment.

Andy

 

[junkcrap50]

You should be taking B12 (methyl and adenosyl) alongside methylfolate. Please see Freddd's protocol and his posts for more information. Others can explain this in more detail as to why you get paradoxical methylfolate deficiency without enough B12.

 

[junkcrap50]

See this thread here for more information as what I described in my post above: http://forums.phoenixrising.me/index.php?threads/what-is-methyl-trapping.22007/

 

[PennyIA]

I agree with the other posters. I'm in a similar boat to yours and am trying to do more about implementing things that are blocking the MTHF, but I've also learned that I seem to tolerate it better than most and need more than the standard dosing. I still have something that seems not quite right - at this point I'm kind of at a loss if it's a missing component or if I have the right components, but not the right levels of them. I seem to do best if I'm at high dose for 3 weeks, off for a week. Then repeat. Somehow that seems to help 'clear out' whatever it is that isn't doing well and/or keeps things from causing crashes (well, assuming that it's doing anything other than just delaying my next crash).

I'm taking either 20 mg or 30 mg of methylfolate and around 2-3 doses of methylcobalamin and adenocobalamin transdermally. As well as a handful of helper supplements that I'm still trying to tweak and sort out.

 

[Mary]

@crowquill - I agree with everyone else re the niacinamide and need for methylB12 and adenoslycobalamin.

One more thing which is crucial for very many of us potassium. Do read Freddd's posts - here's another one, and read especially what he says about potassium: http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/

Starting folate and/or B12 can cause a rather sudden, sometimes severe, drop in potassium levels as cells start to heal and multiply and divide, all of which increase the need for potassium. My potassium tanked about 4 days after starting methylfolate, my chief symptom was severe fatigue, which actually was rather familiar - I'd had it before only never knew what it was. And on blood tests my potassium levels were always in the low-normal range.

I titrated up to 1000 mg. of potassium over a couple of days and that horrible fatigue lifted. You don't want to take a huge amount of potassium all at once, that can cause problems. And if low potassium is the problem, or at least part of it, you should know relatively quickly. I currently take around 300 mg. 3 x a day, plus drink low-sodium V8 which is high in potassium.

 

[ahmo]

There are links in my signature for Freddd's Protocol. The 2nd is to a guide I compiled w/ quotes from Fred. Please see the section on Deadlock Quartet supplements. These 4 appear to be essential to get methylation healing: MethylB12, AdenoB12, Mfolate, carnitine, typically LCF form.

 

[crowquill]

Really helpful replies. Thank you!

B12 - I get both adenosyl and methyl cobalamin in the Essential Nutrients but maybe not enough. Also have a methylcobalamin sublingual spray - Better You B12 Boost.

Penny - really interesting. Thank you! Especially interesting since you are A1298C like me which is supposed not to need such a high dose of MTHF. 20-30mg sounds like a heck of a lot! Definitely something to discuss with my ND. I am going to try one week on, one off once I tinker with the dosages suggested here.

Mary, my last potassium reading was 4.5 (ref range 3.5 - 5.1) two weeks ago which seems okay but will definitely bear it in mind.

Ahmo - will go look at those as I have yet to completely get muy head around Freddd's protocol and am using a blend of Yasko, Ben Lynch and my practitioner's suggestions. Will check my form of carnitine.

Greatly appreciate you all taking the time to comment. It is wonderful having a community of people who have gone through similar experiences and protocols.

Andy

 

[Freddd]

Really helpful replies. Thank you!

B12 - I get both adenosyl and methyl cobalamin in the Essential Nutrients but maybe not enough. Also have a methylcobalamin sublingual spray - Better You B12 Boost.

Penny - really interesting. Thank you! Especially interesting since you are A1298C like me which is supposed not to need such a high dose of MTHF. 20-30mg sounds like a heck of a lot! Definitely something to discuss with my ND. I am going to try one week on, one off once I tinker with the dosages suggested here.

Mary, my last potassium reading was 4.5 (ref range 3.5 - 5.1) two weeks ago which seems okay but will definitely bear it in mind.

Ahmo - will go look at those as I have yet to completely get muy head around Freddd's protocol and am using a blend of Yasko, Ben Lynch and my practitioner's suggestions. Will check my form of carnitine.

Greatly appreciate you all taking the time to comment. It is wonderful having a community of people who have gone through similar experiences and protocols.

Andy

Hi Andy,

I would suggest taking a look at the "refeeding syndrome" posts to have some sort of framework in which to work with things. Basically you got methylation started and then it went away, with other symptoms. Sounds like a refeeding syndrome "induced deficiencies".

I find that with the active b12s and folate and LCF that more than 50mg a day of B3 kills it, all increased deficiency symptoms and no healing. Also large doses of inositol appear to do the same. One thing I would like to point out is that an active B12/folate protocol is very exacting. Also, p5p amount appears very large relatively.

You say 5gr of l-carnitine. Did you do a comparative test of LCF, ALCAR and freebase L-carnitine?. 500mg should be approximately plenty to way too much for many to start at.

And then there is your multi vitamin - 500mcg of folinate could crash 10mg of Metafolin for me. Way too much of some b-complex vitamins. Basically I can find at least half a dozen individual reasons each of which could cause me to predict failure of this supplement program.

 

[crowquill]

Thank you, Freddd. Will search for refeeding syndrome. Helps to have a term for this!

Will take your suggestions very much to heart and discuss with my ND. Really helpful. I am starting to understand this is an exact science not a throw everything in and hope situation.

What is folinate?

Andy

 

[Freddd]

Thank you, Freddd. Will search for refeeding syndrome. Helps to have a term for this!

Will take your suggestions very much to heart and discuss with my ND. Really helpful. I am starting to understand this is an exact science not a throw everything in and hope situation.

What is folinate?

Andy

Hi Andy,
Calcium folinate, a salt of folinic acid, similar to vegetable folates. Folinic acid is in between folic acid and methylfolate as far as the conversion goes. I found that for me while folic acid could knock out 10x the amount of methylfolate, folinic acid could knock out 20x. It is in your multi. If it doesn't convert sufficiently, it blocks. My advice has been to get rid of folic and folinic acids and variations so that the results are not ambiguous. After getting everything working one can then try the other forms and see how they work or not

 

[crowquill]

Thanks, Freddd. Yes, it is there, 500mcg of Calcium folinate and 500mcg MTHF.

 

[crowquill]

I think one of the problems is that we are trying to do a mix of the Dr Myhill mitochondria protocol and methylation. This could well be leading to the problems you have all observed in high levels of some supplements. Dr M's mito support:

magnesium 300mgs by mouth (but ideally magnesium by injection), co enzyme Q 10 200mgs, acetyl L carnitine 2 grams, D-ribose 15 gms, niacinamide 1500 mgs and vitamin B12 1mg by mouth (ideally by injection)

Will let that go and focus on the methylation.

 

[Mary]

@crowquill - at the risk of beating a dead horse, here's a little more about potassium. First, my levels were often around 4.5, just like you, but that didn't stop methylfolate from depleting my potassium, or me from experiencing low potassium symptoms, despite semi-normal bloodwork.

Here's a link which is very good in which Richvank (extremely knowledgeable, unfortunately he died suddenly from a heart attack and we miss him greatly) discusses why people with CFS/ME have so much difficulty maintaining adequate potassium levels, and even if serum levels test okay, intracellularly they can be in trouble: http://forums.phoenixrising.me/inde...entation-needed-in-methylation-treatmt.18670/

FYI, when you respond to someone, if you put an "@" sign in front of their name like @crowquill, they'll receive an alert that you have responded, which can be helpful

 

[crowquill]

@Mary Thank you. Will read that with interest.

 

[Freddd]

I think one of the problems is that we are trying to do a mix of the Dr Myhill mitochondria protocol and methylation. This could well be leading to the problems you have all observed in high levels of some supplements. Dr M's mito support:

magnesium 300mgs by mouth (but ideally magnesium by injection), co enzyme Q 10 200mgs, acetyl L carnitine 2 grams, D-ribose 15 gms, niacinamide 1500 mgs and vitamin B12 1mg by mouth (ideally by injection)

Will let that go and focus on the methylation.

@crowquill,

The problem is with the formula as a whole. It is wrong in so many ways but is good in other ways. It has too much of some b-vitamins. It would be better to do this right. ATP from mitochondrial support is very important.

The mito support begins with all the basic vitamins and minerals and then the deadlock quartet, started in an order and titrated by results. So MeCbl, AdoCbl, L-methylfolate, and L-carnitine (best variety for person, (LCF or freebase or for many fewer, ALCAR). It is needed to break the deadlock that forms. And when methylation is started then one needs to deal with the potassium and more folate need, and get that balanced out assuming it starts, then continue to AdoCbl and then l-carnitine. This needs to be done carefully and observantly. And the basics include the trace minerals as well in normal doses and watch for those deficiencies which may take a long time or never show up.

So basically that multi has some wrong things and a lot of right things. So to a large extent one needs to buy a low dose B-complex without any folate or b12 and add the additional things. There are multi mineral products that do a decent job.

It isn't nearly as easy as taking a 6 pills of a premix a day. I don't know of an easy way that has any real chance of working. Everybody I have known who has reasonable success has done so by having a custom mix by titrating all sorts of things and recognizing what the next item is to adjust. That is what the refeeding syndrome is about, recognizing the induced deficiencies. And you need to have a decent idea of what you are doing to avoid damaging yourself. Actually healing has it's hazards.

Do some reading. The potassium is excellent. That is what can cause an ER visit or worse. Take a little time and understand what you intend to do and make preparations.

,

 

[aquariusgirl]

Wow you are taking such big doses of everything!

Ok so another thing is R5P.. Bioavailable form of B2 has a relationship w/folate & seems to run low in some folks (sorry can't remember the science) & needs to be addressed first or concurrently.

I actually fell into the B3 sponge methyl sink situation mentioned above ....

And also, some of us need to take low dose lithium orotate ( not to be confused w/Rx lithium carbonate ) in order for B12 to be transported anywhere....A lot of pills I know but we learned about the lithium the hard way ....blood sweat & tears....so don't be tempted to skip that

Having said all that, I spent years trying to figure out methylaytion support starting back in 2007 when Rich came out w/ his simplified methylation protocol....but it never worked/felt right until I got on zinc & mitosynergy's form of copper.

I think SOD wasn't working...so I had massive inflammation & pushing methylation just made things worse.

But this may not be true for everyone & Mitosynergy copper is NOT regular copper & I imagine regular copper would not be a good idea....too inflammatory.

Good luck
.

 

[picante]

more than 50mg a day of B3 kills it, all increased deficiency symptoms and no healing. Also large doses of inositol appear to do the same.

How much is a large dose? And isn't inositol a methyl donor? So why would it do that?

You see, I took 150 mg of inositol this morning and the brain fog I got was horrid. It didn't lift until I had taken 2 x 80 mg of niacinamide. (Then I managed to e-mail a client in French about a complicated issue, but needed a nap afterwards.)

 

[aquariusgirl]

Also I just circled back around to biotin & it's really helpful