Thirst for MFolate, those that have ramped up

[Freddd]

What is

Freddd, thank you.. If I've got it right then you're saying that not as much MB12 is needed as some of us are thinking. (However, in those without MTRR and MTR problems that the B12 is recycling at the proper rate.)

Also that if taking MB12 AND AB12 (possibly LCF?) one might need to up the folate or possibly deal with the Donut Hole. I believe people have taken large doses of just MB12 (injection or otherwise) and not dealt with such issues. So maybe it's due to the AB12/LCF?



:thumbdown: I said "after 12 years of CFS I'm still in pretty good physical shape." Maybe you misread that. If you're assuming lack of activity because of CFS that's not the case for me so much. I have stayed fairly muscular and been able to do the gym 2 times per week and was running bleachers on the weekend (don't now because it's too cold mostly).

My mental issues lately are mostly some foggyness, introversion and mood instability. Had anxiety for a long time but not so much lately. Also need to note that the mood issues mostly resolved when I was on strict Paleo.

Hi Sregan,

Concerning muscles, it isn't all about exercise. One of the things people can have is excess MMA from a deficiency of AdoCbl/carnitine that then start loosing muscle mass, as the muscle cells die they release their b12 into the serum and it is reused. PEM is common too. That is the hypothesized storage mechanism. A slow bleed of AdoCbl out of the muscles over 20 years can keep a person alive. The muscles don't recover well and don't repair well and don't increase bulk when in that situation. Mood issues are a big one too. I'm just exploring ideas from a different angle than many people do.

How much B12 a person needs is a difficult question. CNS problems like demyelination require the most B12, peripheral neuropathy comes in next. Not sure where immune system comes in. And things differ from person to person. At the minimum amount for healing to turn on it isn't all that much. There is a bit of a speedup with more, and additional triage layers can turn on with a lot more. When I was taking a single Enzy Cbl daily and once a week AdoCbl the most limiting factors were l-methylfolate and LCF. There can be a different most limiting factor on each triage layer.

It sounds like you are working your way through this. It isn't easy.

 

[sregan]

Been having loose movements for the last 2 days now. I'm assuming I need more Mfolate from the posts I've been referencing. Also wondering if it's die off?

 

[sregan]

So I upped my M-Folate to 8mg per day (3mg - 2mg - 3mg) and taking about 800mcg x 6 Enz B12. A little 2.5 mg ACBL with about 250mg LCF in the AM plus cofactors.

The new thing I added was a second B-complex at lunchtime with my MFolate and MB12. Went to the gym today and had a huge increase in strength and energy. Very significant and very encouraging!

Also my GI issue resolving nicely and I've been feeling really good yesterday and today.

Click Here for my exact current protocol, updated today

 

[whodathunkit]

@sregan: great news! Good for you! But please don't get discouraged if you experience some bumps after this great result. Having a great workout and then crashing a little bit can be a big letdown if it happens. But it can also be par for the course. It's just a little bump in the road, however. The fact that you can have a great workout is an indication you're on the right track. It's a ride sometimes, for sure.

Just wanted to update people about my vision since we were discussing earlier in this thread: blurriness is over. Everything seems to be fine now. Now I definitely think the blurriness was all about my blood sugar. Both choline and thiamine (sulbutiamine is a thiamine analog) apparently have the effect of reducing blood sugar in cases where it's elevated. In my case I think the choline, sulbutiamine, and the enforced week-long fast while I had the stomach flu-thing brought my blood sugar down long enough, consistently enough to a level where it started the vision problems. I won't say what my numbers were before I got sick but they were Not Good At All. Not over 200, but bad enough. After I got sick they were dramatically better, but still not normal.

But now over the last couple weeks I have brought my blood sugar WAY WAY WAY down with Resistant Starch (RS) and probiotics. RS is some pretty amazing stuff. I had a fasting reading of 78 yesterday, which I don't think has ever happened before in the five years I've been checking my sugar. I'm still in the early stages with RS but the results have been quite startling. Today is the first time I've been able to use my reading glasses since I got sick...things were too blurry and even the little bit of magnification I use exacerbated that. It's nice not to have to squint at the computer anymore.

Still not completely our of the woods yet, though. But I think it would be unrealistic to expect everything to normalize completely in just two weeks, even if I'm confident that it will normalize in the fairly near future. It's very encouraging to know I may be able to lick the blood sugar beast without anyone in the healthcare system sticking me with a (mis)diagnosis of diabetes. I'm pretty happy. And more motivated than ever to eat right and take care of myself, that's for sure. I don't want to go back to the land of blurry vision ever again!

Sorry for hijacking the thread again with O/T. Just posting in case anyone is interested.

 

[sregan]

@sregan: great news! Good for you! But please don't get discouraged if you experience some bumps after this great result. Having a great workout and then crashing a little bit can be a big letdown if it happens. But it can also be par for the course. It's just a little bump in the road, however. The fact that you can have a great workout is an indication you're on the right track. It's a ride sometimes, for sure.

Just wanted to update people about my vision since we were discussing earlier in this thread: blurriness is over. Everything seems to be fine now. Now I definitely think the blurriness was all about my blood sugar. Both choline and thiamine (sulbutiamine is a thiamine analog) apparently have the effect of reducing blood sugar in cases where it's elevated. In my case I think the choline, sulbutiamine, and the enforced week-long fast while I had the stomach flu-thing brought my blood sugar down long enough, consistently enough to a level where it started the vision problems. I won't say what my numbers were before I got sick but they were Not Good At All. Not over 200, but bad enough. After I got sick they were dramatically better, but still not normal.

But now over the last couple weeks I have brought my blood sugar WAY WAY WAY down with Resistant Starch (RS) and probiotics. RS is some pretty amazing stuff. I had a fasting reading of 78 yesterday, which I don't think has ever happened before in the five years I've been checking my sugar. I'm still in the early stages with RS but the results have been quite startling. Today is the first time I've been able to use my reading glasses since I got sick...things were too blurry and even the little bit of magnification I use exacerbated that. It's nice not to have to squint at the computer anymore.

Still not completely our of the woods yet, though. But I think it would be unrealistic to expect everything to normalize completely in just two weeks, even if I'm confident that it will normalize in the fairly near future. It's very encouraging to know I may be able to lick the blood sugar beast without anyone in the healthcare system sticking me with a (mis)diagnosis of diabetes. I'm pretty happy. And more motivated than ever to eat right and take care of myself, that's for sure. I don't want to go back to the land of blurry vision ever again!

Sorry for hijacking the thread again with O/T. Just posting in case anyone is interested.

@whodathunkit thank you for sharing your experience. I have had plenty of bumps and letdowns during this last 11+ years. I keep on pushing through with this protocol and instead of feeling worse I'm feeling better from it. Completely counter intuitive but holding true so far.

Very glad your vision is improving and your blood sugar. Sounds like you are making great progress! I need to look into RS that you mention. This information you have learned and applied would make an excellent blog entry! You might consider starting a blog here

Note to all: I encourage everyone to start a blog here and post their story and experience and most importantly what they have learned.

On the topic of finding information from this forum. Note the "Google Site search" link in the search box. This can provide a far more comprehensive search than you will get from the forums built in search.

 

[ahmo]

@whodathunkit

You might consider starting a blog here

 

[sregan]

So I'm stepping up mfolate again. Upped to 9mg today and tomorrow not sure. I seem to plateau very quickly. Felt better today on 9mg. Just ordered more SMP supps. Noticed the 800mcg Solgar MetaFolin was a LOT cheaper than the 1mg tabs I was buying. I got like 200 800mcg tabs for the price of 100 1mb tabs. Ordered more Enzymatic MB12 (8 I think). At 30 tablets per bottle you can go through very quickly. Took 9 potassium gluconate also today. Has some calf cramping. Also took some magnesium and drank a lot of MTHFR-Ade.

It seems like each increase is immediately met by feeling better (more boost of neurotransmitters) then a couple days later I need more. We'll see where this goes.

Had some lower back pain also. For me that is the first sign that my adrenals might be in trouble. Taking VItamin C to feed them along with PABA and Pantethine in the AM.

Also think @Gondwanaland should start a blog!!

 

[Freddd]

So I'm stepping up mfolate again. Upped to 9mg today and tomorrow not sure. I seem to plateau very quickly. Felt better today on 9mg. Just ordered more SMP supps.

Hi Sregan,

I increased from 14,400 to 19,200 mcg recently. At 14,400 mcg I never quite escaped from the each 2 week folate deficiency cycles. I'm about a month into it and so far nothing as blatant as previously. The past 2 cycles have been seen in the b12 coloring in urine and potassium fluctuations. The whole thing looks like it is approaching a limit. Have you tried SAM-e at anything like your present balance?

 

[SJB944]

@Freddd So you find each two weeks despite taking a consistent amount of folate (14400mcg), you get folate deficiency symptoms -- including potassium fluctuation, and b12 not being utilized?

I'm noticing some sort of cycle with my own folate despite consistent intake as well -- at about 12800, recently increased to 14400. Potassium definitely fluctuates, no sign of b12 coloring in urine, actually never seen that, only taking 9mg a day though.

 

[whodathunkit]

It seems like each increase is immediately met by feeling better (more boost of neurotransmitters) then a couple days later I need more.

Yep. Same here for a long time, until I hit those really high dosages, which was where I needed to stay for a while. Not sure how high you want to take it, but chiming in because there doesn't seem to be any danger in going as high in folate as your symptoms dictate. I would guess the only thing to worry about is taking enough mB12 to keep up with your folate intake, as well as other co-factors to keep in balance.

And even at high dosages, things are not all perfect health and roses. If you go there you might just have to stay there for a while and still endure a some subpar functioning (when compared to healthy people). But if you look down from high dose and things are on the whole and fairly consistently much better than they were even if they're not perfect, that's a win.

Early on TMG really helped even me out for a couple of weeks, until it gave me gastro symptoms. SAM-e was good for about a week until I got too speedy. Not saying that you shouldn't take these because they did help, but just mentioning as caution that they were "quick fixes" for acute DQ symptoms for me and ultimately not long-term parts of my regimen. So it could happen to someone else, too, and is not necessarily abnormal. I look at them as my DQ Tylenol.

Had some lower back pain also. For me that is the first sign that my adrenals might be in trouble.

I have adrenal issues, too, and adrenals had some trouble adjusting to the boost in metabolism from methylation increase. I'm still adjusting, in fact, because my adrenal issues are of very long standing (maybe life-long). This too is a dance. Dunno if you're exercising or not, but you might want to bag that for a little while or ramp down significantly, and let your body adjust to the supplements since they are what is going to heal you. Especially in the early stages I found there was quite a large difference in what my body thought it could do because of increased energy and what I was actually in physical condition to do. I crashed myself a few times from exercising. Even just what is considered a "normal" amount of exercise was a bit too much at times. My body recovered more quickly and I was never as sore as before the DQ, but it was not a straight steady increase in exercise tolerance across the board, since adrenals are very much involved in that. Again, it was three steps forward and two steps back, or three steps forward and one step back. Not all the crashes were severe, but they were little crashes nonetheless.

Also for adrenals try salt loading. Drinking salt water in the morning really seemed to help me for a long time. it's still a go-to strategy for me if I think my adrenals need a little boost.

Good news is I think my adrenals are really catching up now. I don't know if they'll ever be completely up to par, but if they don't that's more a product of my life's circumstances and past lifestyle and "damage done" than a negative against any health recovery strategy I've been doing. Also, I think that resistant starch is "another brick in the wall" along with DQ and lipid replacement when it comes to stress tolerance, stamina, and endurance. But that's a whole 'nother topic, and maybe not appropriate here, because starting RS can come with its own set of problems which could make dealing with the DQ even more confusing. But it might be something to think about for the future, if you're worried about your adrenals.

HTH. Keep us posted!

Edited to add: sorry if I've already said most of this to you before in other places. So hard to remember where I've posted what, and to whom.

 

[Gondwanaland]

Also think @Gondwanaland should start a blog!!

Yes, about what NOT to do when starting a methylation protocol

 

[whodathunkit]

@Gondwanaland: I think that would be the content of all of us if we started blogging!

 

[sregan]

Hi Sregan,

I increased from 14,400 to 19,200 mcg recently. At 14,400 mcg I never quite escaped from the each 2 week folate deficiency cycles. I'm about a month into it and so far nothing as blatant as previously. The past 2 cycles have been seen in the b12 coloring in urine and potassium fluctuations. The whole thing looks like it is approaching a limit. Have you tried SAM-e at anything like your present balance?

Freddd thanks, I haven't though of trying any of the "accelerators" like SAM-e, TMG, Lithium or Biotin just yet.

I need to study up on the following:

1. What taking more ACBL will do (physiologically speaking)

2. What taking more LCF will do

Then what I'd like to study up on the cofactors. I have a pretty good understanding that SAM-e will add methyl groups and help the methylation cycle. TMG supports the short cut route so more methylation there also. So those two are other places on the methylayion diagram one could hit. Seems to me basically stepping on the gas pedal.

Lithium supposed to help drive mfolate (and maybe MB12) into cells (more healing?) and not sure wth Biotin does except grow hair.

 

[sregan]

I would guess the only thing to worry about is taking enough mB12 to keep up with your folate intake, as well as other co-factors to keep in balance.

Hey if you (or anyone else) doesn't mind can you take a look at my protocol and if you can suggest anything I'm missing that I might want

Early on TMG really helped even me out for a couple of weeks, until it gave me gastro symptoms. SAM-e was good for about a week until I got too speedy.

How did you take these? One per day? how many mgs?

Also for adrenals try salt loading. Drinking salt water in the morning really seemed to help me for a long time. it's still a go-to strategy for me if I think my adrenals need a little boost.

I've tried salt and use it fairly liberally but don't drink it. Doesn't really help out my adrenals (and I've tried everything). Glad it's helping for you

Also, I think that resistant starch is "another brick in the wall" along with DQ and lipid replacement when it comes to stress tolerance, stamina, and endurance. But that's a whole 'nother topic, and maybe not appropriate here, because starting RS can come with its own set of problems which could make dealing with the DQ even more confusing.

I know, someone should write a blog entry about that stuff!

 

[Gondwanaland]

I know, someone need to write a blog entry about that stuff!

I can write about that too

 

[whodathunkit]

If I blog I won't have time to post in other threads. I could spend all dang day on this site!

@sregan: with TMG I used powder. My first doses were low but I reacted so well to it I ramped up very quickly. I liked it. I thought for a very short while it would be my new preferred form of crack (like the mB12 shots were when I first started them), but alas, 'twas not to be. I think my final dose was about 1500 mg/day, and then the gastro symptoms became problematic so I quit.

SAM-e I didn't do quite as long as TMG because I didn't react as well to it. I started with 200mg o of that and then up to 400mg. It made me speedy so I just don't bother with it any more. But I can definitely see why some people would really like it and get a lot out of it. It worked at least that well for me.

 

[Freddd]

Freddd thanks, I haven't though of trying any of the "accelerators" like SAM-e, TMG, Lithium or Biotin just yet.

I need to study up on the following:

1. What taking more ACBL will do (physiologically speaking)

2. What taking more LCF will do

Then what I'd like to study up on the cofactors. I have a pretty good understanding that SAM-e will add methyl groups and help the methylation cycle. TMG supports the short cut route so more methylation there also. So those two are other places on the methylayion diagram one could hit. Seems to me basically stepping on the gas pedal.

Lithium supposed to help drive mfolate (and maybe MB12) into cells (more healing?) and not sure wth Biotin does except grow hair.

Hi Sregan,

TMG is a major source of methyl groups and is measured in mgs. SAM-e, like folate and MeCbl is a transferor of methyl groups and is measured in micrograms. Ultimately SAM-e increases methionine. It is part of the Hcy-methionine cycle Sam-e can feel like it is stepping up methylation, but it isn't a doesn't drive methylation but is often a limiter of it. It is called the universal methylator because it donates the methyl group to all sorts of reactions. It doesn't supply the methyl group, except the original one it enters the body with. Instead it is methionine and then homocysteine and everything in-between in both directions.

TMG doesn't drive it either, just supplies the methyl groups for a lot of things, being changed itself to DMG which can then donate another methyl group in some circumstances. TMG is choline minus one methyl group. So each of these items supplies a methyl group for different energy reactions. Be careful what you believe about these things because if your beliefs don't match with what occurs you won't be able to make sense of the responses because they won't be explained in a way that works. Many of these methylation diagrams are done with folic acid and CyCbl assumed, so watch out for unsuspected "gotchas" in there. One of the things that may be a surprise is that TMG often affects the ATP balance in some way when that might otherwise be "too hot". The rest of methylation business is at least as tricky as realizing that too little methylfolate produces lots of histamine and inflammation and that it can take a sizable dose to fill the need and get rid of folate deficiency symptoms.

Biotin has an effect on ATP end of things IF there isn't already enough for the amount of reaction occurring. Biotin doesn't drive the cycle, it allows the cycle. It limits but doesn't drive it,

Something I would like to say that is 100% personal to each of us. For all these things based on genes, like the folate usage genes, have affected each of us all our lives. I've had folate deficiency symptoms all my life. What I have felt as the effect of an afflicted folate system is not the normal biochemical state of the human body. The partially crippled folate metabolism is "normal". I don't know what I would be like or feel like with a fully normal folate and B12 body so I can't tell you what it is supposed to be but I can tell you it was awful 12 years ago with all 4 of the deadlock quartet in deficiency.

There are far more theories about what the interrelationships between the real MeCbl, AdoCbl and L-methylfolate and everything else than there are biochemical actualities. When talking about 3 things the relationships are pretty straightforward. When there are 15 items involved it gets terribly complicated. This whole business is about finding the combinations and which and how the various things fit together. It was a shocker to find that too much B1, B2 and B3 could cause folate and potassium deficiencies. There are plenty of other things that may have an inverted U shape effectiveness curve too. We have been mislead by 70 years of research studies based on folic acid and CyCbl/HyCbl because 100% of everything else was limited by low levels of active B12 and folate because of folic acid and CyCbl/HyCbl. EVERYTHING is different with these items replaced with body adequate levels of the active forms.

 

[sregan]

Be careful what you believe about these things because if your beliefs don't match with what occurs you won't be able to make sense of the responses because they won't be explained in a way that works.

Yeah, that's why I was gonna look this stuff up. Want to know what everything does so I might better guess what might be doing what.

Thanks for the info, going to my blog...

 

[sregan]

Two problems today...

1. I ran out of Enzymatic MB12 and am taking my Source Naturals brand I had lying around since before. UPS is coming today...

2. I've got my daughter's cold. Started on Monday and last night slept awful. My mind get so messed up when I'm sick when I sleep. Was awake/asleep all night.

Last few days starting to feel more lower back pain. Believe my adrenals are getting more stressed out. But I have No Way to know what is from the cold or from SMP...

I don't plan on changing anything and trying to stress adrenal supplements right now.

Also I really don't think I've had any increased need for Potassium. I've been taking like 300-600mg per day but believe my need for Magnesium is much more than my need for Potassium.

Since I'm not MHTFR++ but MTRR++ wondering if my methylation was that compromised. I could probably test that by just stopping SMP cold turkey assuming my MB12 levels are high enough. (not planning on doing that but if my adrenals keep getting worse not sure where to go)

I had my positive days where seems like my neurotransmitters were up, my brain fog has been much lower since I ramped up along with my inflammation. I also that incredible day at the gym where last week I felt the stength and energy of myself 20+ years ago. Wondering if that's ATP kicking in (another reason I had asked about the TMG, SAMe and the other cofactors. if I could get that pathway working better).

The SMP supps are doing something. I have been methyltrapped twice and the very first time I heard about SMP I went out and got a bunch of Methylation cycle donors and took a bunch and crashed very hard...

UPDATE: 2/6 Still have the cold which always seems to exaggerate every symptom I have anyway. But so hard to tell what might be from the cold and what might be from SMP. dropped down to about 7mg Mfolate per day. Adrenals still feeling a little tapped out. Did get my shipment on time so back in business with Enzymatic.

 

[sregan]

Alright cold is over!! Feeling so much better. Slowed down a little on SMP yesterday (like 5mg instead of the 9mg). Back on 9mg today. Felt very good in the AM. Noticed I'm having the ability to do things again. I believe it's a dopamine issue (ala the movie Awakenings). Not being able to initiate doing the smallest thing. A ton of things need to be done but it's so hard to start to do anything. Not today I was a go getter. Had the energy and drive to make things happen.

So I'm not backing down. At this point not sure if I want to ramp up MFolate more or try SAMe or TMG (or Lithium and/or Biotin. Does anyone know what Biotin was supposed to do regarding methylation?). I'm leaning toward trying a small dose of TMG.