• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

How to untrap a methyl trap

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
It sounds like there are some definite pre existing conditions being aggravated for sure... I think Fred would be able to guide you much better then I could...

You will definitely have to be careful of any form of methyl trap and low potassium for one, it sounds like you are just hyper sensitive for whatever reason..

Maybe a current methyl trap that is triggered and creates a deeper pocket of deficiency..

Hopefully Fred can guide you through as to what it is, I really hope your health issues clear up soon man.. Those are some really strange symptoms but it does sound like there is definitely some kind of methylation trap in play based on the reactions you mentioned..

Now its just a matter of how to adjust and correct it.

One thing that may help ease your mind is that with anxiety and the like will always naturally elevate blood pressure and make minor changes to the heart.. Its usually harmless and is just a normal physiological fight or flight response..

I used to have panic attacks that would last like 6 hours 5 years ago. Sometimes my heart rate would stay at like 185 bpm for a few hours at a time, which is INSANE! Lol no damage done though just high heart rate and blood pressure due to massive adrenaline!
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Freddd,

Well again… I had no ME/CFS symptoms prior to November… Only symptoms I was dealing with were elevated estrogen at times…. weight gain over the past several years with an inability to lose any weight despite eating a lower processed carb/paleo style diet and regular exercise… In fact I was quite active. As my weight had gone up (I've put on approx 55 lbs over the past several years) I started getting high blood pressure and some cardiac symptoms… although the cardiologists can't find anything. I've got some very mind abnormal EKG reading… slight bundle ranch changes that still lands we with a normal result

After taking the Estrium..cmbined with the synthetic Bs I was already on…. I immediately started to have a pins and needles/prickley heat sensation all over my body…. this built up over a couple of says…. then all of a sudden the swelling and fat gain happened… left leg in particular really swelled up.. after going to a vascular doc hey determined I've got a couple of not so good valves in there and varicose veins… However they said something very acute must have happened to start that level of swelling… some kind of inflammatory reaction that aggravated the vessels.

In addition to that I start to have "FAT" gain in odd parts of my body… upper arms, armpit area… not typical places guys gain weight… but never had weight gain there before even with the high estrogen. Thing is it was a sudden onset… As I said previously I could feel it happening… I know that sounds crazy….

After a couple of weeks I stopped the estrium and synthetic Bs…. in the meantime I got labs results back from quest indicating 2 copies of the C77t MTHFR dx. My doc then put me on the basic protocol of Methyl b12 ad folate. At this point it is Mid November.

I took 1000mcg of each… within a day I was getting a headache.. .so I cut it with Niacin and that helped… But then I got hit with agitation feelings…. never had that before…. so we cut my dosage in half of each… I think I may have dropped the methyl b12 down to 250mcg and the Methyl folate to 500 mcg. My original tingling and swelling were subsiding at this point. But I just didn't feel right… hard to describe…. just off .

By Jaunary I decided to stop the Methyls altogether…. After that I noticed I was getting a pins and needles burning sensation when I was sitting i the car for more than a half an hour… onl in the back of my legs and butt I was also getting hit with periodic waves of that same agitation and anxiety… out of the blue….every couple of days...

about 3 weeks ago I made the dumb decision to take a multi-vitamin… figured I might be missing some other nutrients… and I ate 2 fortified protein bars over a 2 day period(I used to eat protein bars all the time with no problem)

I immediately felt the tingling sensation come back… Also got hit with another episode of the sudden fat/swelling in those same areas I also got hit wit the worse agitation and anxiety I had had thus far… I just laid on the sofa and shook like I had the flu. The next morning I was scheduled to do blood work… I still felt bad… so bad I went to he ER later that day… still had the pins an needles

By saturday night I was hit with a sudden onset of yellow burning diarrhea…. I also felt acidy… my skin burned… even my tears were burning by face… felt like a chemical burn….

Over the next few days the burning got worse all over my body… I took metamucil to help with the diarrhea (I read that somewhere) It not only helped but I noticed it took away my burning sensation in my body temporarily… I thought maybe something was going on with my gut…

my labs came back with the results I've already mentioned in the first entry at the top of the page… Ammonia also came back a bit elevated… 63 (47 is cut off)

I had been reading about methyl trapping and thought that may be going on… I had some hydroxy b12 (which I had never taken before) I took a half dose 500mcg in the early afternoon and by evening I felt I was having a heart attack.

The acute feelings wore off after a few hours bu I felt weak/drained after that… I did notice however that my burning was much improved though… a couple days later I thought I'd try it again but at a even lower dose… I took a quarter of a tablet… I guess about 250 mcg…. same thing happened… less cute onset but lasted longer…

On othner thing... I want to emphasize that the Methyls have not caused any swelling, weight gain, ect... only the agitation, anxiet and increases in blood pressure... The times I've had the swelling, ademna ,, and weight gain were after the epsisode with the estrium and with the multi-vitamin and protein bars... which leads to me believe there may be a problem with the B vitamins building up in my system... I would have though that any build up of those synthetics would have dissapated since early November....

So that is pretty much my whole story … any insight would be appreciated… my 23andme should be back in a few weeks.

I had no ME/CFS symptoms prior to November

Sudden onset is common and some use it as definitional. What symptoms did you have before that including most especially the ones the doc says "non-specific, don't mean a thing". What did you have going back to childhood?


Estrium has whey and folic acid. Whey can cause methyltrap which can cause edema. Folic acid can cause paradoxical folate deficiency which can cause edema.

As my weight had gone up (I've put on approx 55 lbs over the past several years) I started getting high blood pressure and some cardiac symptoms… although the cardiologists can't find anything. I've got some very mind abnormal EKG reading

So you are on your whey to congestive heart failure it sounds like.


However they said something very acute must have happened to start that level of swelling… some kind of inflammatory reaction that aggravated the vessels.

Methyltrap will do that.

I had some hydroxy b12 (which I had never taken before) I took a half dose 500mcg in the early afternoon and by evening I felt I was having a heart attack.

HyCbl makes methyltrap worse.


the multi-vitamin and protein bars

Again, I bet they have whey and folic acid, the perfect recipe for cause edema and congestive heart failure and widespread inflammation.

I'm not a doctor. Everything you are doing looks like it is ganging up to put you into methyltrap and keep you there with congestive heart failure.

Based on my own experience and research, B12 deficiencies (included methyltrap and partial methylation block) messes up the hormones, can cause large weight gain of watery fat at the same time as muscle breakdown and no way to lose weight. When I got my nutritional situation figured out I lost 85 pounds of water over a number of months in two batches, lost 40 pounds of gat and put on 50 pounds of muscle. I no longer have congestive heart failure, FMS or CFS and am the healthiest I have been in my life.

It's not likely b-vitamin buildup. It is the wrong kind of folate, the wrong kind of b12, taking whey and together that has out you ion a potentially deadly road. I wouldn't expect that the genetic testing will do you any good as long as you keep doing all the things causing you problems.

Some will disagree with me and some don't. You have to make your own choices. In my experience you can turn this around in months or struggle with it until you die.
 
Messages
31
Thanks Martial !!!

Yes, I'm actually a psychotherapist... so I'm used to helping folks with anxiety and panic attacks...So I'm on the other side of the desk now... LOL !!! Thing is... I'm still convinced these have a physiological cause.... like they are squirrling with my neurotransmitters.... Wellbutrin makes people agitated like that...it impacts dopamine...

I did find a clue today that may be important.... I've still been dealing with this burning (although less) and pressure under my breast bone... also my eyes were stinging a bit more today... I decided to take an antacid... just genetic pepcid... within 20 minutes the pain in my breastbone was gone... and my burning and stinging were reduced considerably. I'm wondering now if these Bs triggered some kind of gut bacteria infection... that might explain the yellow burning diarrhea and the high histamine..as well as why the metamucil helped those symptoms. The MTHFR folks said there are some gut bacterias that get messed up or can even produce(I don't understand it) b vitamines...

This is the first time in over two weeks I've actually felt close to normal ! I did a DNA GI affects test.. still waiting for the results.
 
Messages
31
I had no ME/CFS symptoms prior to November

Sudden onset is common and some use it as definitional. What symptoms did you have before that including most especially the ones the doc says "non-specific, don't mean a thing". What did you have going back to childhood?


Estrium has whey and folic acid. Whey can cause methyltrap which can cause edema. Folic acid can cause paradoxical folate deficiency which can cause edema.

As my weight had gone up (I've put on approx 55 lbs over the past several years) I started getting high blood pressure and some cardiac symptoms… although the cardiologists can't find anything. I've got some very mind abnormal EKG reading

So you are on your whey to congestive heart failure it sounds like.


However they said something very acute must have happened to start that level of swelling… some kind of inflammatory reaction that aggravated the vessels.

Methyltrap will do that.

I had some hydroxy b12 (which I had never taken before) I took a half dose 500mcg in the early afternoon and by evening I felt I was having a heart attack.

HyCbl makes methyltrap worse.


the multi-vitamin and protein bars

Again, I bet they have whey and folic acid, the perfect recipe for cause edema and congestive heart failure and widespread inflammation.

I'm not a doctor. Everything you are doing looks like it is ganging up to put you into methyltrap and keep you there with congestive heart failure.

Based on my own experience and research, B12 deficiencies (included methyltrap and partial methylation block) messes up the hormones, can cause large weight gain of watery fat at the same time as muscle breakdown and no way to lose weight. When I got my nutritional situation figured out I lost 85 pounds of water over a number of months in two batches, lost 40 pounds of gat and put on 50 pounds of muscle. I no longer have congestive heart failure, FMS or CFS and am the healthiest I have been in my life.

It's not likely b-vitamin buildup. It is the wrong kind of folate, the wrong kind of b12, taking whey and together that has out you ion a potentially deadly road. I wouldn't expect that the genetic testing will do you any good as long as you keep doing all the things causing you problems.

Some will disagree with me and some don't. You have to make your own choices. In my experience you can turn this around in months or struggle with it until you die.

Hi Freddd,

Thanks for your response... just a clarification... There are two kinds of Estrium... They do make a Whey protein version.... but I was not taking that... I was just taking the plain estrium to help clear estogen... was not not taking any Whey during any of this.... although I have in the past .

I was not aware hydroxy can make methyl trap worse... Wish I knew that a week ago... What is the mechanism ? I thought the goal was to get some b12 in there to help start up the methylation cycle... to break the trap. Even got suggestions from folks on here to take it ... Any thoughts on Adeno B12.

Wish I could tell you there was anything significant as a kid... no real problems... fairly healthy... had mumps and chicken pocs... that was about it... Healthy adolescent... played sports... jogged/ran into my late 30s and I've been an avid whitewater and sea kayaker for over 20 years,,,

Got to remember though... the multivitamin was a single pill 3 weeks ago... I had not had any since early November... and prior to November I had no problem taking any vitamins.... so hinde site is 20/20 but I had no reason to think there was any issue.... Like I've said before I feel like I'm on a rollercoaster I can't get off of

I agree with you... I think there is a connection with all of this... the vitamins... hormones... weight gain... inflammation (speaking of inflammation... I forgot to mention I've had C4A levels come back as high as 13000(2800 is top range) that is an inflammation marker.. .and I've had herx reactions to antibotics and even things like green smoothies.

If you read my response to Martial you see I think I may have found a clue to at least of some of this... take a look at it and tell me your thoughts on the possibility of a bacterial gut infection

And if it is a methyl trap... how to I get out of it... that's what I've been trying to find out in my last couple of posts on here... Your experience and suggestions would be greatly appeciated

Thanks again for your response
 
Last edited:
Messages
31
Freddd. you still out there… ??? I could really use your suggestions on how to get out of this methyl trap.

I'm a blank slate at this point… I'd be open to whatever you suggest… what to take… what not to take … what to eat… what not to eat What I'm doing is obviously not working,,, So your help would be greaty appreciated…

And thanks for sharing some of your own history/story… gives me hope I can get through this…
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Dknickerbacker,

http://forums.phoenixrising.me/inde...y-deadlock-quartet-and-other-nutrients.27482/
This is a short form read.

http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/
Long form

Childhood symptoms like sleep disorders, night terrors, streps, "growing pains" show one track.

HyCbl doesn't start methylation. It is dependent upon already having functional methylation and ATP to be converted to MeCbl and appears to be the starvation mode work around. Reading the neurological disaster that the Cyanokit causes after neutralizing the cyanide the other day really hammered it home.

For proper full functioning:
MeCbl depends on methylfolate, AdoCbl and carnitine.
Methylfolate depends upon MeCbl, AdoCbl and carnitine
AdoCbl depends upon MeCbl, methylfolate and carnitine
Carnitine is dependent upon MeCbl, methylfolate and AdoCbl
HyCbl is dependent upon MeCbl, AdoCbl, methylfolate and carnitine.

In order for HyCbl to be converted to MeCbl and AdoCbl requires enzymes and ATP. The enzymes are dependent upon methylation and ATP. The ATP is dependent upon methylation. The methylation is dependent upon ATP.

There is a 4 way deadlock. HyCbl doesn't break that deadlock. While if a person still has some functioning, HyCbl works for 10 or 20% of active b12 deficiency symptoms to a limited extent for 67% of people and not at all for 33% of people. The longer HyCbl is taken the more intense the startup effects of MeCbl and AdoCbl when finally started. It can NEVER fully satisfy either set of needs much less both sets of needs. It makes many of them worse.

Now to the anxiety and panic, when in the presence of the usual CFS/FMS symptoms, appears to indicate a certain type of limbic system damage with hyper response to and of the deadlock quartet and most typically l-carnitine. A person with this damage may not be able to tolerate more than 100mcg of carnitine to start with. 1mg for instance (in presence of already started MeCbl, AdoCbl and l-methylfolate, can cause, often in repeatable order but varying from person to person; anxiety, panic, anger, rage, homicidal rage and deep depression over a 36 hour period. It appears to correspond with the rise and then fall of carnitine causing mitochondrial startup in the limbic system with the carnitine being the most limiting.

Reaction to green smoothies is paradoxical folate deficiency. Severe folate deficiencies causes hyper responses and out of control inflammation. It's not "herx" at all. Really.

Getting out of methyltrap is easy, easier than falling off a log. I found it euphoric to suddenly stop feeling so awful for 17 years. The problems is that while methyltrap hits like a ton of bricks, so can coming out of it. People who have anxiety, fear, panic reaction to this startup find it "unpleasant" and that may not do the intensity of the response, justice. All you need is a change of theory and what you do. You can be out of methyltrap in a couple of hours after starting. Then in 3 days donut hole folate deficiency appears along with low potassium which can get nasty fast if a person isn't prepared to deal with it. So one needs to have all their ducks lined up.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
You will need Enzymatic Therapy B12 infusion 1mg or Country Life Methyl b12 5mg, Anabol Naturals Dibencoplex (AdoCbl), Solgar or other brand of Metafolin (I'm suggesting that for startup because I know how that works with these others and haven't tested the other brands and forms of l-methylfolate. Then the Jarrow Liquid L-carnitine for microtitration. In addition I would suggest Potassium Gluconate tablets to start with. Again you may have other preferences as things go along, there is a lot of customizing essential. In addition a low dose b-complex, I use the Nature Made B-complex with C for two doses a day, A, D, e, C, magnesium, zinc, omega3 oils, lecithin or some other more specialized products of which there has been some discussion recently., a multi mineral and some others. Too high a dose of B1, B2 and B3 can cause all sorts of problems. No Folic acid, no folinic acid, no green drinks, no NAC, no glutathione or precursors. After one gets healing started it's obvious what helps and what doesn't. I spent the first 5 years learning how to get things to start reliably. The past 6 years has been on all the things that modify that.
 
Messages
31
Thanks for writing back Freddd…
would it be ok to use the methyl b12 I already have… I forget the name but I did take it for a month and a half… I've already ordered some adeno b12 from Dr. Ben Lynch's site… would that be ok…
I'm familiar with L carnitine… I used to take it all the time when I worked out…
Question about the potassium… my blood pressure med has a potential side effect of raising potassium… so do you think I would need more ? I was using nature made b-complex when I had my first attack… aren't those synthetic Bs ?

So even though I might be in a methyl trap… I still take the methyl folate again… ok

So green smoothies… ? what about just berries in it without the spinach or kale… ? Not sure what to be eating… I've lost close to 20 lbs since all this started .. from not feeling well and not having an appetite … so I need to have some healthy stuff to eat… just not sure what I can eat now….

Could gut bacteria infection be part of this… take a peek at my last reply to Martial on this thread… wondering if that yellow diarrhea, the burning and my favorable response to metamucil and antacids could also be part of this …

thanks for your response
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thanks for writing back Freddd…
would it be ok to use the methyl b12 I already have… I forget the name but I did take it for a month and a half… I've already ordered some adeno b12 from Dr. Ben Lynch's site… would that be ok…
I'm familiar with L carnitine… I used to take it all the time when I worked out…
Question about the potassium… my blood pressure med has a potential side effect of raising potassium… so do you think I would need more ? I was using nature made b-complex when I had my first attack… aren't those synthetic Bs ?

So even though I might be in a methyl trap… I still take the methyl folate again… ok

So green smoothies… ? what about just berries in it without the spinach or kale… ? Not sure what to be eating… I've lost close to 20 lbs since all this started .. from not feeling well and not having an appetite … so I need to have some healthy stuff to eat… just not sure what I can eat now….

Could gut bacteria infection be part of this… take a peek at my last reply to Martial on this thread… wondering if that yellow diarrhea, the burning and my favorable response to metamucil and antacids could also be part of this …

thanks for your response

The BRANDS specified matter. I have tested more than 20 brands of MeCbl to find 2 that work well currently. I have tried multiple brands of AdoCb l to find one that works noticeably better than the others I've tried. I know Dr Ben Lynch's site. He is quite wrong about a lot of things he says about l-methylfolate. Who knows if the b12 he sells there is any good. He isn't doing it based on direct effectiveness knowledge but rather on theory. I have done comparative testing of over 20 brands. Nine out of ten brands of MeCbl are not worth using. They won't work for this. Nobody at all out of thousands of people have suggested that brand as working well. The only one that someone said "This is as good or better than the one you are using" was right. I'm testing it now and it is good and I'm very glad to have it. I have a chance for CNS repair again. First trbest others have spent a lot of time and money finding then try other things once you have a basis of comparison.. There are qualitative differences between different b12s that have to do with the bacteria producing them or processing or something that is not obvious and has nothing to do with the "usual quality of their products". So Country Life has a good product and others that are not so good or untested, some that have folic acid and destroy any goodness. One brand that worked well for 9 years stopped 20 months ago. After you get healing going experiment all you want. If you don't get healing going the answer will remain, get the specified brands.

Eat well. But, based on your reaction to the green drinks, same as mine, avoid excessive amounts of vegetable folate, especially until you get healing going and can tell the difference in a few hours. I pay of if if I eat a garden feast and go into partial methylation block (commonly called "detox"). I have a nice organic garden, I just have to keep limits. I try to keep stable on 8mg a day of Metafolin. I could eat more veggies if I took 16mg a day. That is expensive. I eat no white flour with folic acid. I buy whole wheat pasta. I eat no fortified cereals. If I want cereal I make granola or find one that doesn't have some things in it. I eat fresh foods, almost no prepared foods, buy fresh veggies when I can't grow them. I can make a near perfect medium rare Chateaubriand, a really great pumpkin bread (as much pumpkin as whole wheat flour) and so on. I use herbs from my garden. I use Redmond Real salt without any chemicals and lots of minerals with a real taste advantage. I eat air popped popcorn with browned butter and REAL Salt. I eat very well. It just takes a little more time and effort. Get healing and in balance, then experiment. I have found in 11 years at this that I need every incremental advantage I can get to keep the healing going. I'm determined to be able to regain the use of my thumbs without severe pain, to be able to write readably, type without 20 typos per line and regain feeling in my feet without pain. I have gotten the control of my toes back, the ability to stand on one foot, the ability to stand up without holding on, knowing where my feet are without looking, not breaking toes in the dark because I don't know where my feet are, not falling over for the same reason. I'm playing "you bet your life" and it is no laughing matter with Groucho. We can talk recipes later. There ought to be a thread for those. Food is important. Radio said we aren't talking about food enough. I agree.
 
Messages
31
Thanks freddd… I'll check the brand of Methyl folate tomorrow (it is at my office) and email you tomorrow… it is not Dr. Lynch's.
I wat to clarify about the veggie herding issue. For several years I've been getting right lymph node pain periodically in my neck. back in 2009 I got dx with lyme… actually they were not 1005 certain but treated it like it was lyme. Did doxy and then cholestyromine (following dr. Richie Shoemakers toxin binding protocol) I had really bad herding from them as well… Symptoms were all the same.. right side doe pain in neck… scrambled speech, thought blocking… what I called verbal dyslexia… now I've gotten this with the Cholestromine which binds biotoxins, charcoal, the green smoothies… even had it happen from the metamucil… as it is a mild binder in the gut (that's why they market it for cholesterol lowering…. So I'm still betting the smoothies might have a binding effect in the gut… who knows…

Any thoughts on my gut bacteria question and comment I made in my last reply with Martial ?

Tell you why I'm asking… I mentioned in my comment to him I took an antacid and my chest pressure and some of the body burning subsided.. however just a bit ago I got hit with some burning loose stool… not quiet diarrhea.. .. Also got hit with chills…. I'm wondering if there might be a gut infection going on as well.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
You still have lyme, I am sure of it now.. based on what you said earlier I was going to ask if you were ever tested for lyme as well.. It also explains the gut bacteria issues..

My suggestion is to get testing from IgeneX labs and get yourself to an LLMD prompto! I can help you with lyme treatment as well, its what I have and am currently treating..

The herxes from abx are pretty exclusive of lyme, I was also suspicious of it when you mentioned dramatic inflammation issues..

I can also show you a way to clear out any possible gut bacteria but NEVER use acid suppressants! Your issues right now more stem from low stomach acid then too much, a bacterial gut infection depletes acid and this creates malabsortion of nutrients and minerals.. It also causes you to not fully digest your food which will cause an allergic response from fermenting in your stomach for so long. Stomach acid suppresents also cause mal absorption of nutrients which makes things even worse..

I could write you a novel on nutrition and what to do, as well as what not too.. I have something much easier though lol, There is a guy named Chris Kresser that runs a site and he has all the CORRECT info on nutrition out there and you will learn everything you will ever need about nutrition from there..

Here is the link
http://chriskresser.com/

just go through and browse the different articles and build up that knowledge!


For the methylation issues it already seems fred has given you everything you need to know..

One more suggestion is that if you did have relief from the stomach acid drugs it is probably related to the fact it blocked the H2 allergy response receptor.. There are much more natural options to block this allergy response.. Lyme can also make you allergic to multiple chemical sensitivities and foods..

Here is a supplement that blocks both the h1 receptor and h2 receptor and works to protect against neural damage and oxidative stress.. I highly suggest it especially if you have lyme!

http://www.algonot.com/neuroprotek.php

Hope you find everything you need well bud, this will be an easy fix once you get everything dialed in the right way.

regards,

Todd
 

whodathunkit

Senior Member
Messages
1,160
Knick, FWIW, I tried Lynch's adenosylcobalamin. It did a little bit, but nothing earth-shattering, and I was infusing 18,000 mcg/day, divided doses. Expensive. So I probably won't buy anything from him again. I didn't even finish the bottle of his adb12, but ordered the Anabol Naturals adb12 after about 6 days of using Lynch.

The Anabol Naturals, on the other hand, seems as effective as Freddd says. I noticed an immediate difference in energy with that product, using smaller doses. If you want some specific supplements in a hurry, including the AN adb12, iherb has great overnight shipping for cheap.

Interestingly, like you, I'm starting to have a few gut issues after using Freddd's recommended supps (Dr's Best carnitine fumarate, Anabol Naturals adb12, Solgar folate 1000mcg, and D-ribose) for a few days. Not bad, but a little reflux in my throat here and there. And my stomach feels warm occasionally.

Long time ago I used to get reflux fairly frequently when I was a hard-core junk food junkie, and I used a bunch of antacids (Zantac, Prevacid) to stop it. Then I cleaned up my diet somewhat and didn't need antacids any more.

Now I'm eating clean and using Freddd's methylation protocol and the reflux is happening a little bit again. I'm chalking it up to methylation "start-up" and increased ATP production. I haven't really had any energy in so very long, even the cells in my GI tract must be very excited about it all. :D

I'm also having some of the alternating poop issues Freddd mentions in his donut hole theory, plus a very low-level headache. So I'm upping my folate today and seeing where that takes me.

I'm not having any of the intense health issues like you are, just throwing that out there for encouragement because I thought there might be some similarity. And if nothing else, gives you something more to think about when choosing supplement brands.
 
Messages
46
Many people have a response to MeCbl and Methylfolate of low potassium (increased BP and other things) and donut hole paradoxical folate deficiency where healing gets going in some triage layers and worsened deficiency symptoms in other triage layers. Common startup symptoms are listed below in categories.

Version 1.2 12/08/2013

Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with CyCbl (Cyanocobalamin) it is very common with MeCbl (methylcobalamin) and AdoCbl (adenosylcobalamin) and less so with HyCbl (Hydroxycobalamin).

There does not appear to be a clear order of onset. The order of onset varies widely from person to person but many appear consistent for each episode for any given person. There tend to be more and more intense symptoms as it gets worse. Some people have ended up in the ER because of not recognizing the symptoms.

IBS – Steady constipation, Nausea, Vomiting, Paralyzed Ileum,

Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness

Abnormal heart rhythms (dysrhythmias), increased pulse rate, increased blood pressure

Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.


Group 2a - Both

IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation


Group 2b – Either or both

Headache, Increased malaise, Fatigue



Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency

These symptoms appear in 2 forms generally, the milder symptoms that start with partial methylation block and the more severe symptoms that come on as partial methylation block gets worse or very quickly with methyltrap onset.

Edema - An additional thing I would like to mention. I would never have found it without 5 years of watching the onset of paradoxical folate insufficiency and trying to catch it earlier and earlier and to figure out what was causing it and to reverse it. For me the onset order goes back to the day of onset now with edema and a sudden increase of weight. I noticed that within 2 hours of taking sufficient Metafolin I would have an increase in urine output.


Old symptoms returning

Edema

Angular Cheilitis, Canker sores,

Skin rashes, increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips,

Increased hypersensitive responses, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms

IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract,

Coated tongue, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Increase irritability, Heart palpitations,


Longer term, very serious

Loss of reflexes, Fevers, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, bleeding easily




Group 4 - HyCbl onset, degraded MeCbl onset, MeCbl after photolytic breakdown onset.

Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.


@Freddd,

I'm noticing a runny nose every morning as I have the b12s under my lip. Reading your symptom list above, I see runny nose can indicate folate insufficiency/deficiency. I'm taking 5mg of b12s each at a time, with 800 mcg of metafolin an hour before. When should I start upping the folate? Immediately? By how much at a time? Does it matter how I space the doses? I've seen specific recommendations for titrating potassium, but can't find anything on folate.

Thanks for your help.
 
Messages
46
@Freddd,

I'm noticing a runny nose every morning as I have the b12s under my lip. Reading your symptom list above, I see runny nose can indicate folate insufficiency/deficiency. I'm taking 5mg of b12s each at a time, with 800 mcg of metafolin an hour before. When should I start upping the folate? Immediately? By how much at a time? Does it matter how I space the doses? I've seen specific recommendations for titrating potassium, but can't find anything on folate.

Thanks for your help.

Actually, come to think of it, I have had most of the group 3 symptoms since the onset of my "fibromyalgia/CFS", which started about one month after I started supplementing with b12 (not sure which kind, it was over 2 years ago), after being found to be very deficient (serum level of around 70 I think). This makes me very hopeful that your protocol is the key to recovery, and I thank you for giving me that hope, Freddd. Any comments or insights into the best way for me to approach the protocol would be appreciated. Let me know if you would like more details on my history/symptoms.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
Actually, come to think of it, I have had most of the group 3 symptoms since the onset of my "fibromyalgia/CFS", which started about one month after I started supplementing with b12 (not sure which kind, it was over 2 years ago), after being found to be very deficient (serum level of around 70 I think). This makes me very hopeful that your protocol is the key to recovery, and I thank you for giving me that hope, Freddd. Any comments or insights into the best way for me to approach the protocol would be appreciated. Let me know if you would like more details on my history/symptoms.


up the folate to at least 10,000mcg a day for now,take 15mg of methyl b12, and 10mg of adob12, as well as 500-1,000 mg of carnatine a day... that would be all you need.. there are higher dose forms of methyl folate that are sold as the name 5mthf....

Also avoid all NAC, Folic acid in all forms, whey protein, and Glutathione supplements.. those are all methyl traps..

do all of this and you will be golden.

Then just supplement with a bit of potassium in whatever diet/supplement form suits you... Freddd suggests at least 3,000mg of supplemented potassium a day.
 
Messages
46
up the folate to at least 10,000mcg a day for now,take 15mg of methyl b12, and 10mg of adob12, as well as 500-1,000 mg of carnatine a day... that would be all you need.. there are higher dose forms of methyl folate that are sold as the name 5mthf....

Also avoid all NAC, Folic acid in all forms, whey protein, and Glutathione supplements.. those are all methyl traps..

do all of this and you will be golden.

Then just supplement with a bit of potassium in whatever diet/supplement form suits you... Freddd suggests at least 3,000mg of supplemented potassium a day.

Thanks very much for the advice!
Should I take the l carnitine right away? I thought Freddd recommended waiting until the folate and potassium were stabilized? Do you think I need to titrate up to those doses of b12 or just jump right to the higher doses?

I'm feeling excited today just making this realization that I'm probably just deficient in folate, and maybe because it has only been two years, it might not take long to heal.

Thanks again!
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
You can wait if you want, I started it with the rest regardless... I think the potential issues with that stem from even higher need for potassium which most people do NOT supplement/diet correctly lol... You can jump to those doses of the b12 without issues either, no need to wait in methyl trap you don't want to prolong it longer then necessary. Just definitely make sure to raise the folate to at least 10,000mcg a day that along with high dose "quality" methyl b12, and adob12 will pull through any deficiency...

Usually people run into issues with trapping and the like when they go to low on doses of the protocol, or have issues with low potassium by undermining the new need for greater amount of total potassium intake, and finally get into trapping's from folic acid, glutathione supplements, NAC, Whey, or other things.. Certain prescription drugs can also interfere with methylation.. Chemo therapy as one example.

Sure man, healing comes in as long as a couple weeks to to months, but really healing will be a life long thing...

You will have the instant healing and cellular re alignment with the protocol immediately in hours after the first dose, this is the big bang so to speak usually within a few weeks or months complete remission of symptoms if things are done right.. The cellular healing and added changes that occur last a life time though, always growing and becoming more efficient and stronger over time... This just accounts for added bonus super health! :D
 
Messages
46
@Martial Interesting. Not looking forward to the complete remission part, but I'm willing to try anything and this still sounds hopeful. I've already radically altered my diet and lifestyle but it isn't enough. Do most people have to keep up with the high doses forever, then, or does it eventually become a maintenance dose? Thanks for the advice.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
I don't mean anything negative about complete remission or anything perhaps I am not explaining correctly.. It can take a couple weeks to sometimes months to be symptom free if you were having methylation issues, that is for people that have been sick a long time... Can be way shorter, or possibly longer for some but there is no harm in anything or any reason to be afraid.

Sounds like you are doing all the right steps for sure! No, just depends on how much you want to do.. In the beginning high doses help to kickstart things and get you going, then later you will need a lot less but still some kind of protocol in place, just in the beginning it is important to do whats necessary to avoid methyl trapping, and be sure to keep up the potassium supplementation/diet that will always be necessary as long as you use methylation treatment... Think of methylation treatment as depleting the natural bodies reserves of potassium, as long as you use it there will be a necessary high rate of added potassium.

If you are like me though you need to treat any underlying infections before you get fully healthy.. Even on methylation treatment I am still really sick until I can clear out my lyme disease issues! No matter how great your methylation protocol it won't have full effect if an infection is blocking ATP production.


Perhaps it would do you some good to get tested for lyme as well, but you would need to go to an LLMD and get the test run through IgeneX labs.. If that is the reason you are sick then methylation alone will not cure you.

Anyways I am sure you are well on your way man! You are in a great place as well!

-TOdd
 
Messages
31
Been a while since I've been on…. a lot has happened…. burning an bile diarrhea/poop worse. My PCP thought I had a gut infection…. put me o antibiotics… felt good for a day or two… like old self… then massive diarrhea (likely from antibiotics) also got really bad neuropathy from the flagyl…. that subsided …

GI effects stool test game back… my PH is VERY acidic and I have malabsortion issues with my fats and cholesterol… also missing a lot of good gut bacteria… Good news no parasites or other infections… So apparently didn't need the antibiotic.

GI Doc thinks I have bile duct diarrhea… it has been over a months… !!!

Also got some disturbing lab back… homosystiene levels keep going up… they were 8.0 this summer; 9.2 in November and now 11.1 just last week…. blood glucose has ton up to 101… it is usually in the 80s… I've now dropped just over 20 lbs in past month and a half. Something I did when I started and/or stopped those methyl Bs has triggered something… I know folks on here wanted m to start up with the methyls again…

but the MTHFR support Nutritionist I'm working with does not want me to do it yet…. wants me to focus on getting the gut healthy…. but my gut was ok before I started these. Igot my 23andme back and I have there gene defects… COMTS, CBS , ect….

Not sure what to do or who to believe… but my health is getting worse… gut related burring nuerapthy every time I eat is paralyzing…. I can't even work when it hits