Paradoxical Folate Deficiency/Insufficiency and Edema

[Freddd]

How long have you been taking ~ 4g of Metafolin? Were you able to start with a high dose?
At the moment I am taking 800mcg and trying to slowly build it up to a higher dose, since I am MHTFR C677T +/+

Is it safe to take a high dose such as 5-7mg/day for long periods of time?

Thanks

Hi PeterPositive.

The Deplin tests found that that "Deplin is well tolerated with side effects similar to placebo". They were just giving those people arbitrary doses. This practice is to titrate to effectiveness. The sooner the folate insufficiency symptoms go away the more comfortable and the more healing. The amounts of B1, B2 and B3 can increase the amount of Metafolin needed. If a person has exposure to folic acid they may accumulate enough to block Metafolin and it can block 10x the Metafolin. I played with all sets of timing to get around that. For some people folinic acid and veggie folates can do the same except that the folinic can block up to 20x as much Metafolin.

I found that people without symptoms are quite happy with 800mcg. People with a startup response often need 4000mcg. People with some degree of folic acid problems 8mg and people with folinic acid problems 16mg. This was before finding that too much b1, b2 and b3 can worsen folate insufficiency. That is why a person needs to find out if they have these sensitivities. I took 20mg a day for some years. Now I take 4-8 mg daily and haven't had an episode of folate insufficiency in months.

 

[Phred]

@Phred,I'm currently taking 50,000 iu of D under the direction of my dr. Nothing, Nada, Eppis...but thanks for the suggestion.
@User U R saying U take 4-5 folate that is x 800mcg RIGHT!
HOW MUCH FOLATE IS EVERYONE ELSE TAKIN' vs mb12 and ab12 PLEASE. TU all very much. xoC

[/quote]


Wow! That's a lot of d. I'm taking 3000 IU of d and that seems to be working well.

I will say that I'm slowing increasing my folate too and that seems to be improving my mood also. I'm now up to 4800mcg spread out over 4 doses plus another 1000mcg in my b-complex. I've upped my Mb12 too. I've gone from 4mg to 8mg. According to my genetics I should have problems with methyl donors, but I don't seem to. I also take 5mg on the Anabol ADb12.

I honestly don't know if my energy has improved or not. I'm so busy trying to get holiday stuff done that I can't tell. Maybe if I wasn't upping my doses I wouldn't be able to get as much done. It's hard to say.

Are you taking LCF? That might make a big difference to your energy.

 

[PeterPositive]

Hi PeterPositive.

The Deplin tests found that that "Deplin is well tolerated with side effects similar to placebo". They were just giving those people arbitrary doses. This practice is to titrate to effectiveness. The sooner the folate insufficiency symptoms go away the more comfortable and the more healing. The amounts of B1, B2 and B3 can increase the amount of Metafolin needed. If a person has exposure to folic acid they may accumulate enough to block Metafolin and it can block 10x the Metafolin. I played with all sets of timing to get around that. For some people folinic acid and veggie folates can do the same except that the folinic can block up to 20x as much Metafolin.

I found that people without symptoms are quite happy with 800mcg. People with a startup response often need 4000mcg. People with some degree of folic acid problems 8mg and people with folinic acid problems 16mg. This was before finding that too much b1, b2 and b3 can worsen folate insufficiency. That is why a person needs to find out if they have these sensitivities. I took 20mg a day for some years. Now I take 4-8 mg daily and haven't had an episode of folate insufficiency in months.

Thanks Freddd, much appreciated.
I am trying to wrap my head around this issue of folate deficiency and for some reason (maybe it's me) I'd like to find some kind of "indicator" to tell me how much do I need. Problem is, folate / methylation tests are pretty expensive among other things.

At the moment I have high homocysteine to bring back to a decent level, so that's one thing. My concern is that basing the dosage on subjective indicators might work for a while but in the long run it might spin the methylation cycle too fast, which isn't good either.

Any thoughts on that?

Thanks

 

[yukito]

Thanks Freddd, much appreciated.
I am trying to wrap my head around this issue of folate deficiency and for some reason (maybe it's me) I'd like to find some kind of "indicator" to tell me how much do I need. Problem is, folate / methylation tests are pretty expensive among other things.

At the moment I have high homocysteine to bring back to a decent level, so that's one thing. My concern is that basing the dosage on subjective indicators might work for a while but in the long run it might spin the methylation cycle too fast, which isn't good either.

Any thoughts on that?

Thanks

HI,Peterpositive
I bite 800µg of metafolin and Iet it melt with my saliva on my tongue during a few minutes,after I swallow.
If it is needed,some positive things happen: my sight improves, my voice become resonant and dark,my body gains some tonus,my back straightens my arms open (like an opera tenor).My facial expression becomes serious,confident.I KEEP INGESTING
If it isn't needed I lose body tonus,it makes me tired. I DON'T CONTINUE
If I have to avoid it,because depleting some other cofactors and who knows wath else..,my facial espression becomes very painful,my face hurts.It makes me feel exhausted on those moments.I AVOID FOODS CONTAINING METHYLFOLATE FOR SOME TIME
Of course you can try some metafolin in a empty stomach but letting it melt in the mouth gives you a more direct and,immediate effect.

 

[cph13]

@Phred my D was low. This is a short term dose. I was takin' Puritan Pride LCF 1,000mg. I felt NOTHING. I switched back to Dr.'s best Sigma Tau this week. Taking 1-855mg so far this week...nothing changed yet. I took 2 855mg today. ehhhhhhhh nada, yet.
I will do mb12 every hour for 8 hrs tomorrow totaling 8,000mcg. My folate is at 4x800mcg (@yikito I also use the folate as a sublingual as you do ) I will increase to 5x800mcg tomorrow n keep it at that rate for a week. I'm holding onto the towel but I am ready to throw it in.
I hate to go backwards and slow it down (been there done that; now I'm stuck) Thanks for listening AND especially for sharing. Happy healing to all xo C

 

[Freddd]

Thanks Freddd, much appreciated.
I am trying to wrap my head around this issue of folate deficiency and for some reason (maybe it's me) I'd like to find some kind of "indicator" to tell me how much do I need. Problem is, folate / methylation tests are pretty expensive among other things.

At the moment I have high homocysteine to bring back to a decent level, so that's one thing. My concern is that basing the dosage on subjective indicators might work for a while but in the long run it might spin the methylation cycle too fast, which isn't good either.

Any thoughts on that?

Thanks

Hi PeterPositive,

At the moment I have high homocysteine to bring back to a decent level, so that's one thing. My concern is that basing the dosage on subjective indicators might work for a while but in the long run it might spin the methylation cycle too fast, which isn't good either.

Because of a fear of a mis-stated at least and maybe imaginary "overmethylation" many people choose not to start healing at all. Find the symptoms of "overmethylation". So far all the symptoms so presented are b12/folate deficiency symptoms. Usually they are specifically AdoCbl deficiency symptoms or paradoxical folate deficiency symptoms which would indicate to me a lack of proper balance. Sometimes they are based on test results corrupted by having people consuming folic acid and CyCbl/HyCbl in their food supply or vitamins. These vitamins and how they corrupt the test results may be at fault.

Until you get rid of ME/CFS/FMS symptoms, the "overmethylation" symptoms are hypothetical and invisible and in my understanding is based on the 60 years of flawed research on CyCbl, HyCbl and folic acid. Speak in terms of what symptoms you want to avoid and answers are possible. Speak of "overmethylation" and you need to find somebody who has healed from Me/CFS/FMS with that theory or you are chasing fairies. Otherwise you may be treating paradoxical folate deficiency in a way so as to make it worse. Good luck.

 

[PeterPositive]

Thanks Freddd, I understand what you mean.
Isn't a low value of homocysteine, for example, a symptom of "overmethylation" in itself? It might take a while to cause any physically tangible symptoms but it surely important to have the right amount of Hcy available.

Speak of "overmethylation" and you need to find somebody who has healed from Me/CFS/FMS with that theory or you are chasing fairies.

Is Me/CFS/FMS only caused by undermethylation?
Maybe we're talking about different things. I am all ears, you are the expert, and I am always interested to learn more.

Personally I can't even say if I fall in any of those categories, probably CFS. I am certainly and under-methylator , having lots of functional GI issues that don't get fixed with any of the "regular" therapies and certainly have experienced significant energy drops during the last 15 years or so.

Cheers

Edited to add: When dr. Ben Lynch talks about keeping B3 at hand to "soak" methyl groups in case of a too high dose of folate/B12, isn't that a case of over methylation?

 

[Freddd]

Thanks Freddd, I understand what you mean.
Isn't a low value of homocysteine, for example, a symptom of "overmethylation" in itself? It might take a while to cause any physically tangible symptoms but it surely important to have the right amount of Hcy available.


Is Me/CFS/FMS only caused by undermethylation?
Maybe we're talking about different things. I am all ears, you are the expert, and I am always interested to learn more.

Personally I can't even say if I fall in any of those categories, probably CFS. I am certainly and under-methylator , having lots of functional GI issues that don't get fixed with any of the "regular" therapies and certainly have experienced significant energy drops during the last 15 years or so.

Cheers

Edited to add: When dr. Ben Lynch talks about keeping B3 at hand to "soak" methyl groups in case of a too high dose of folate/B12, isn't that a case of over methylation?

Hi PeterPositive,

Edited to add: When dr. Ben Lynch talks about keeping B3 at hand to "soak" methyl groups in case of a too high dose of folate/B12, isn't that a case of over methylation

Maybe we are speaking of differences in semantics. When B3 of a larger than needed dose is taken it causes increases paradoxical folate deficiency symptoms and pretty much stops healing. It can also cause a great deal of potassium being dumped causing insatiable need for both Methylfolate and potassium, lots of miserable and even dangerous side effects and no healing. If that is desirable then do it. On the other hand to me it indicates something was wrong. I was deteriorating ad getting worse with return of old low potassium and old low folate symptoms. Ahhh, no I get it, that is also DETOX. That magic word that 95% of the time is low folate and/or low potassium symptoms. So if throwing somebody into deficiency is caused by "mopping up the methyl groups" perhaps it is and that is why it does the damage.

I am certainly and under-methylator , having lots of functional GI issues that don't get fixed with any of the "regular" therapies and certainly have experienced significant energy drops during the last 15 years or so.
It might take a while to cause any physically tangible symptoms but it surely important to have the right amount of Hcy available.
Hcy is on one end of an equilibrium reaction that goes around and around a circle. It is never a perfect idealized circle, it always bobbles and precesses depending upon all sorts of temporary changes. So you have been going hill for 15 years.

Partial methylation block is one relatively mild characteristic. methyltrap is brutal and so is partial ATP block when it is severe. The whole methylation cycle can't be properly balanced without also having the ATP cycle running smoothly. So focusing on only methylation doesn't work and produces wrong results. MeCbl without methylfolate, AdoCbl and LCF isn't going to work right. So overmethylation symptoms arte still deficiency symptoms, largely B12 deficiency symptoms by AdoCbl which isn't involved in methylation except that ATP and enzymes are needed all over the place.

It might take a while to cause any physically tangible symptoms but it surely important to have the right amount of Hcy available.

So what is the right amount of Hcy. If this were determined on a norming group that had no folic acid and no CyCbl or HyCbl and instead had all the active b12s and folate and carnitine? What is the "average" level then? I don't know. Nobody does. If it has no symptoms why do people assign dozens of b12, folate and carnitine deficiency symptoms to it. That doesn't make sense at all. If it has symptoms differently from all these deficiency symptoms, first remove the deficiency symptoms and lets observe. If it causes no symptoms ever, in effect causes nothing to happen, what is the problem? However, if fear of it stops a person from healing for 15 years the meme is dangerous.

Why would somebody talk themselves into being so scared of healing that they have to crash it every time it gets started?

A lot of people doing the Active B12 protocol who never heard of any of these things tend to be ready for rehabilitation in a year.

 

[yukito]

@Phred my D was low. This is a short term dose. I was takin' Puritan Pride LCF 1,000mg. I felt NOTHING. I switched back to Dr.'s best Sigma Tau this week. Taking 1-855mg so far this week...nothing changed yet. I took 2 855mg today. ehhhhhhhh nada, yet.
I will do mb12 every hour for 8 hrs tomorrow totaling 8,000mcg. My folate is at 4x800mcg (@yikito I also use the folate as a sublingual as you do ) I will increase to 5x800mcg tomorrow n keep it at that rate for a week. I'm holding onto the towel but I am ready to throw it in.
I hate to go backwards and slow it down (been there done that; now I'm stuck) Thanks for listening AND especially for sharing. Happy healing to all xo C

I don't use folate as a sublingual,under the tongue(different feeling) BUT ON THE TONGUE.
My D was extremely low at first too,but the 50,000 iu of D that you take is really a lot.Do you take it once a week?
At the present I reach high vitamin d levels(lab results) with just 7500iu once a week.
Interesting thoughts about why low vitamin d levels here: http://blog.cholesterol-and-health.com/2013/12/an-ancestral-perspective-on-vitamin-d_20.html
More videos on the subject are going to come next weeks.

 

[cph13]

@yukito Oh on the tongue, huh. Seems it lasts longer along with the mb12 n ab12 on the side between my gum and kinda under the tongue. Gee, I hope it's getting absorbed that way. I can't do anything on the upper lip and gum. I have root canals and crowns. I caused a major problem doing it there. Yes, I take 10,000iu x 5 days=50,000iu a week. Lower daily doses did nothing but keep it at 22. I will stop this amount after this blood test. Thanks for the link. xo C

 

[skwag]

@Freddd

I slipped into folate insufficiency yesterday after a week of long work hours. Edema preceded the first signs of angular cheilitis by about twelve hours as near as I can tell.

 

[dannybex]

The amounts of B1, B2 and B3 can increase the amount of Metafolin needed.

...

This was before finding that too much b1, b2 and b3 can worsen folate insufficiency. That is why a person needs to find out if they have these sensitivities.

Hi @Freddd ,

Is this b1, b2, b3 effect from observation of yourself and other patients, and/or do you have some studies or references that show this interaction? I've read about B3 as a methyl-sponge, but not the others. Thanks!

 

[ahmo]

@dannybex Freddd's not been around for a couple months. I don't think he has references, but personal experience. I followed his advice, reduced my high dose B's to what I would have considered laughable levels: 25mg B complex, in divided dose. Really cut the amount of K+ I needed. Now I see that that's not what you asked. I've more recently found that putting folate into gums or sublingual has halved the amount I need, from 15mg to 8mg!!!

 

[dannybex]

@dannybex Freddd's not been around for a couple months. I don't think he has references, but personal experience. I followed his advice, reduced my high dose B's to what I would have considered laughable levels: 25mg B complex, in divided dose. Really cut the amount of K+ I needed. Now I see that that's not what you asked. I've more recently found that putting folate into gums or sublingual has halved the amount I need, from 15mg to 8mg!!!

Interesting, thanks. That's a ton of folate, etc. -- I could never tolerate that much, but good for you. I could never tolerate even low dose b complex -- the b6 gives me neuropathy -- but am curious which brand you found that was so low?

 

[ahmo]

I'm using this one. I divide the caps in half, using a capsule filler. So gettin approx 12mg, twice daily. Fred settled on another, maybe Jarrow B right? There's a Guide linked in my signature, it lists Fred's B comp.
https://www.swansonvitamins.com/swanson-ultra-activated-b-complex-high-bioavailability-60-veg-caps

 

[dannybex]

I started with 800 mcg and quickly developed symptoms of paradoxical folate deficiency. Within a couple weeks I was taking around 4 mg of Metafolin a day. I've been taking around that much for well over a year, and during that time I've felt healthier than I have in the past 20 years.

Is it safe? Deplin is the prescription form of metafolin which is prescribed in doses of 15mg or 30mg a day. So there have been studies done, and I'm not aware of any dangers taking those high doses. That said, I don't think we have any long term studies. For me, I think it is more unsafe not to take it. My nerves were deteriorating. Numbness was becoming more frequent and more severe. I used to catch every cold that came around and it would put me in bed with respiratory infections for a week 3 or 4 times a year. I got sick once last year, and I wasn't bed bound. So I think my immune system is more or less like that of most people now. We all have to make our own decisions about what we do with our bodies and what we put in them. For me, taking higher doses of Metafolin is a pretty easy one.

Hi @skwag -- I'm confused. I know Freddd's talked about this many times, but I can't find his original description/explanation. I thought 'paradoxical folate deficiency' was a result of folic acid and/or folinic acid (or folate-rich vegetables in his case) causing these 'paradoxical' symptoms. ???

 

[ahmo]

@dannybex There's a compilation of Fred's info attached to my signature. When I just put 'paradoxical" into the search of the pdf, I got 17 pages where it appears. Below is the first.

http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/page- 8#post-413853There are no fixed ratios.

With 1mg of AdoCbl and 1mg of MeCbl each held for 1-2 hours against oral mucosa, one could end up with 200-400 mcg or more absorbed. This is enough to turn on all layers of healing except CNS for many of us. A start of methylfolate of 800mcg or less will usually produce a burst of healing on a couple of layers that then demands more folate than the body has easily available and so shorts other layers to supply the ones that are healing causing paradoxical folate insufficiency. So one titrates methylfolate until the insufficiency symptoms go away. This is usually between 1600mcg and 20-30mg depending upon how one reacts to other folates and B1, b2, b3.

 

[skwag]

What @ahmo said.

I was referring to what has more exactly been described as doughnut hole paradoxical folate deficiency. This describes the situation where taking a small dose of folate begins a healing process that requires even more folate. Very paradoxical.

Personally I don't think folic acid blocking methylfolate is very paradoxical, but the nomenclature is not mine and is already in place. So, there are at least two distinct types of paradoxical folate deficiency.

 

[dannybex]

Thank you both. I guess that makes sense.

 

[dannybex]

Personally I don't think folic acid blocking methylfolate is very paradoxical, but the nomenclature is not mine and is already in place. So, there are at least two distinct types of paradoxical folate deficiency.

I understand. I just stumbled across another one of Freddd's descriptions, from this thread:


http://forums.phoenixrising.me/index.php?threads/could-it-be-folate.13114/page-4


"Some people, unknown percentage but it includes me, can't utilize folinic acid or vegetable source food folate causing paradoxical folate deficiency. The more folate containg veggies I eat the worse the deficiency gets. Vegetable food source folate is mostly folinic acid. Folinic acid in sufficient quantity completely blocks ANY quantity of methylfoalte I have tested so far."


It seems like that reaction is more rare than most, but I have read a few others on this forum experience the same thing. In that same thread I linked to (on the first page) there is Karin's story, who thrived on high doses of folinic, plus the study with CFS patients where 81% improved with apparently no side effects, and no mention of needing potassium either, which seems odd, but interesting. We're all different, that's for sure.


http://forums.phoenixrising.me/index.php?threads/could-it-be-folate.13114/