Methylfolate side effects what happened

[Relentless1k]

Hi Relentless1k,



Sounds just like me in so many ways. However, my tests were not perfect unless you call bottom of range or top of range on many things is"perfect". I had lots of symptoms and was called names and told it was all in my head because or because they in the "warning" range rather than "alert" range. So my MCV at 99.8 was < 100 even tghough warning was > 93 at that time and alert was > 100.

If anything my iron status is at the lower end of range, but still above anemic levels. All other nutrients and heart/other organ markers are perfect. RBC and white blood cells and all that stuff is good. Creatinine was slightly over top of range when i was losing all my muscle, but thats a byproduct of muscle loss. Have done ultrasounds of all organs + all the heart tests where they strap u up with electrodes and what not.


Please explain, do you wake up to dump urine every hour and by ,morning you are actually dehydrated or is it that you feel overly dry.?

During the day i am fine, i can easily overhydrate sometimes and have to pee too often. Urine is always clear during the day + i take a lot of electrolytes and potassium + eat many electrolyte rich foods. But when i go to sleep i wake up with bronze colored urine, extremely dry mouth and skin. This happens even if i only sleep for like 4-5 hours. Its actually worse with less sleep, but it also happens when i get 7-9. (I get 7-9 all days except if i made the mistake of going to be too late and having a reason to must get up early. Hence why it can sometimes be 4-5 hours)


In what way bad? Like rotting fish or meat? like rotting asparagus? Like a swamp? Certain specific odors indicate metabolic defects. Or is it an odor in your nostrils or breath that nobody else can smell?

Like a regular sweat way, as if you havent showered for a few days. But it always happens overnight. Under arms, if anything it would have some sort of vegetable smell to it..



With healing also came low potassium and periodic paralyzed gut and much bloating and nausea.
I noticed this too, before starting methylation adding potassium would give me symptoms of too much potassium, now i can easily have a need to supplement several grams of it during a day. It helps a lot.

Thank you so much for your continued responses and not only that but they are fast as well. Do you offer consults by the way? As in people could pay you money for you to look a little more over a persons case and give them info based on your knowledge.

I was taking MeCbl for weeks prior to methylfolate, and i also take ADoCbl and carnitine fumarate, i will continue to use these and slowly introduce methylfolate back in over time. Going to work more on my gut first and just be very certain that all other nutrients/cofactors are in place. I also take PQQ and coq10 with good effects. Any thoughts on PQQ?

 

[Relentless1k]

@Freddd,


The Thread “B-12 The Hidden Story” has much good, basic information on it. You might try scanning it little by little--even going backwards for some of the more recent posts--for those that speak to your particular symptoms: http://forums.phoenixrising.me/index.php?threads/b-12-the-hidden-story.142/

I’m hoping you have a good support system around you and that you find ways to ameliorate your symptoms. It would also be nice if there was a doctor or a naturpath who could work with you and was familiar with methylation.

Take care. Many of us have found our way out of very unpleasant physical situations.

One other thought: why all those amino acids? Particularly with your bad reaction. Draw back, simplify. If I hadn't stopped even my B-Complex initially, I never would have been able to figure out what each thing was really doing to me.

Thanks for all the answers Ive been through much of that thread and also read the FAQ about it on howirecovered's blog

I only take essential aminos which is one product, because i struggle with protein digestion. I was thinking it could help my body make neurotransmitters and or prevent further muscle loss.. I also take BCAA's when i workout and those make me feel really good, which is sort of weird seeing as those 3 aminos are part of the 9 that are in EAA.

I take carnitine fumarate and also took acetyl l carnitine for a year prior to that. I have taken adenosylcbl and methylb12 for months (Mb12 for a year)

My Jarrow B-right seems to cause me a lot of issues so i quit that (it didnt cause me issues back when they used folic acid, now they use only methylfolate)
Folinic acid gives me no issues

Does this mean i dont use folic and folinic, or that they are just not as powerful so they dont cause as much discomfort?

 

[Relentless1k]

Some additional info: TMG has good effects and SAM-e gives me a lot of energy/mental clarity but also anxiety.
Nothing ever felt from carnitine. Have taken way above the doses people usually take. (4g of acetyl carnitine and 3x the dose of fumarate)

Is there any dangers with SAM-e and other methylation supps, like can you drive homocysteine low? What are the symtpoms of too low homocysteine, and it seems its likely to drive it low with massive dose folate no? @Freddd

 

[Kathevans]

@Freddd,

Oh, wow!

I read the thread you posted of the conversation with Richvank from some years ago and all sorts of lights went on. For one thing, he seems to be talking about what I was referring to earlier in this post when I mentioned the ratios of MeB12 to Folate. Not that he’s talking about these ratios, but he is talking about your possible genetic snps and their influence on how you metabolize “folinic acid that causes your body to be intolerant of vegetable-based folate, also.”

He was looking specifically at the MTHFS gene and postulates that a deficiency in this enzyme—which he suggests you inherited—causes folinic acid to rise, which then inhibits SHMT, “which lowers the natural production of methylfolate, which then inhibits methionine synthase and partially blocks the methylation cycle.”

After our discussion of vegetables and my possible reactions to them, I pulled out my MTHFR Report and scanned for MTHFS and found: Rs6495446 MTHFS – ST20 MTHFS G39646A +/+ (CC)

It’s listed in the Phase II Liver Detox section, in the Methylation & Methionine/ Homocysteine Pathway and in the Trans-Sulfuration Pathway, so, yes, it seems to be involved in a lot of processes. (It’s times like these when I wish I had more of my father, the scientist’s brain)

While the MTHFR Report does NOT list the SHMT gene, I must have looked it up when I fed my data into the Promethease database, because I have noted that I am heterozygous for SHMT2 rs34095989 +/-

Somehow, with this mix (and, admittedly, a variety of MTRR and MTR mutations) I come out with both low homocysteine and very low methionine.

For you, Rich hypothesizes that “by taking high dosages of both methylfolate and methyl B12, you overdrive your methyation cycle,” and bypass what would otherwise be problematic.

It’s clear from my experience of increased folate over the past couple of days that I do indeed need higher Folate—and probably LOTS OF IT, enough to, as you say, SATURATE the CNS. It instantly helped (and I understood could ultimately heal) levels of pain, histamines, mood, IBS, and that drippy nose.

BUT, as luck would have it (really!) I got the unsought for opportunity of experiencing more Folate with even less MeB12 than I had accustomed myself to, which was 5,000mcg. I’ve been running low, so yesterday when I took 1,600mcg of folate (in 3 doses, the last with dinner, without any MeB12), I took only 4,000mcg of MeB12 druing the day and had felt some creeping low-level anxiety.

At bedtime I was tired, and yet one of my symptoms that’s been cropping up lately after having disappeared as long as I was consistently boosting B12—was the tight, aching face. I’d thought it had to do with a folate deificiency, but I think now the frontal headache and pain levels relate to that; the tight face and tension throughout my body—a subtle nervousness, almost shaking, actually relates to MeB12 need.

I think because of my snps (Possibly even the TCN2 gene which inhibits cobalamin from getting into the cells), I need to first flood my system with MeB12, just as you have flooded yours with Folate (and MeB12), in order to receive the Folate without the excruciating symptoms I’ve experienced when the proportions are out of wack.

Last night, I put ½ MeB12 under my gums and lay in bed waiting. Slowly the tension disappeared, my body relaxed. But I was still awake at 1:30. Comfortably awake, but still. So I reverted to valium and got 4 hours of sleep for the night.

I’m going to head out and get a 5,000mcg tablet of MeB12 TODAY, so I can continue to titrate up at least in divided doses in the morning and afternoon.

But what’s also clear is that FOR NOW, taking MeB12 later in the day or evening isn’t possible. I don’t have the neurotransmitters to override its mind-energizing effects. But as I increase both the MeB12 and Folate, I believe I will certainly find this less of an issue.


As Rich pointed out: “If larger dosages of methyl B12 are injected or taken sublingually, apparently it is able to diffuse into the cells and bypass the normal processing, based on your experience.” Once in the cells, I, too may be able to handle larger doses of Folate.

@Freddd, somewhere recently, on another thread, you wondered about finding a geneticist to work with with regard to your family’s genetic profile. My husband’s family’s genes are banked at Dana Farber here in Boston for having ‘Familial Polyposis’ (Colon, stomach cancer) and yet none of their genes have been identified with those health issues as of this time.

Through my reading on this site and a chance connection through a former member, ppodjahski, I discovered the head of the Department of Nutrition at the University of North Carolina, Dr. Steven Zeisel, Harvard/MIT educated, who has worked specifically with the PEMT mutation and its relation to breast cancer, which runs in my family. I put together a thread on my own research here: http://forums.phoenixrising.me/inde...od-of-thanks-to-ppodhajski.40755/#post-656302

I mention Dr. Zeisel because I’ve thought of contacting him myself to see if there is anyone he knows in the Boston area who is working on methylation issues. You might do the same for Utah. It’s obvious that there are a lot of scientists interested in genes and metabolism; we’ve just got to find out who might be interested in working with the public in some way.

@Relentless1k In answer to your question: “If i test my genetics, will that be able to tell if i need high doses or if i could heal on RDA level doses?” I think it could give you a template to work from.

Interestingly, apropos of this, last night as my tight face/bodily jitters intensified, my heart also began to flip around more than it has lately, and the resolution was the same as for the other symptoms I was experiencing: more MeB12.

As we all know, there may be other cofactors limiting my ability to tolerate higher doses of Folate and MeB12 that aren’t specifically interdependent. But, as Freddd has said, these two are the most predictable items, and as such are certainly a good place to start.

You're one step ahead of the game already taking the L-carnitine. But as to the folate vs folinic, I don't know how to parse the reactions except by observation.

 

[Freddd]

@Freddd,

Oh, wow!

I read the thread you posted of the conversation with Richvank from some years ago and all sorts of lights went on. For one thing, he seems to be talking about what I was referring to earlier in this post when I mentioned the ratios of MeB12 to Folate. Not that he’s talking about these ratios, but he is talking about your possible genetic snps and their influence on how you metabolize “folinic acid that causes your body to be intolerant of vegetable-based folate, also.”

He was looking specifically at the MTHFS gene and postulates that a deficiency in this enzyme—which he suggests you inherited—causes folinic acid to rise, which then inhibits SHMT, “which lowers the natural production of methylfolate, which then inhibits methionine synthase and partially blocks the methylation cycle.”

After our discussion of vegetables and my possible reactions to them, I pulled out my MTHFR Report and scanned for MTHFS and found: Rs6495446 MTHFS – ST20 MTHFS G39646A +/+ (CC)

It’s listed in the Phase II Liver Detox section, in the Methylation & Methionine/ Homocysteine Pathway and in the Trans-Sulfuration Pathway, so, yes, it seems to be involved in a lot of processes. (It’s times like these when I wish I had more of my father, the scientist’s brain)

While the MTHFR Report does NOT list the SHMT gene, I must have looked it up when I fed my data into the Promethease database, because I have noted that I am heterozygous for SHMT2 rs34095989 +/-

Somehow, with this mix (and, admittedly, a variety of MTRR and MTR mutations) I come out with both low homocysteine and very low methionine.

For you, Rich hypothesizes that “by taking high dosages of both methylfolate and methyl B12, you overdrive your methyation cycle,” and bypass what would otherwise be problematic.

It’s clear from my experience of increased folate over the past couple of days that I do indeed need higher Folate—and probably LOTS OF IT, enough to, as you say, SATURATE the CNS. It instantly helped (and I understood could ultimately heal) levels of pain, histamines, mood, IBS, and that drippy nose.

BUT, as luck would have it (really!) I got the unsought for opportunity of experiencing more Folate with even less MeB12 than I had accustomed myself to, which was 5,000mcg. I’ve been running low, so yesterday when I took 1,600mcg of folate (in 3 doses, the last with dinner, without any MeB12), I took only 4,000mcg of MeB12 druing the day and had felt some creeping low-level anxiety.

At bedtime I was tired, and yet one of my symptoms that’s been cropping up lately after having disappeared as long as I was consistently boosting B12—was the tight, aching face. I’d thought it had to do with a folate deificiency, but I think now the frontal headache and pain levels relate to that; the tight face and tension throughout my body—a subtle nervousness, almost shaking, actually relates to MeB12 need.

I think because of my snps (Possibly even the TCN2 gene which inhibits cobalamin from getting into the cells), I need to first flood my system with MeB12, just as you have flooded yours with Folate (and MeB12), in order to receive the Folate without the excruciating symptoms I’ve experienced when the proportions are out of wack.

Last night, I put ½ MeB12 under my gums and lay in bed waiting. Slowly the tension disappeared, my body relaxed. But I was still awake at 1:30. Comfortably awake, but still. So I reverted to valium and got 4 hours of sleep for the night.

I’m going to head out and get a 5,000mcg tablet of MeB12 TODAY, so I can continue to titrate up at least in divided doses in the morning and afternoon.

But what’s also clear is that FOR NOW, taking MeB12 later in the day or evening isn’t possible. I don’t have the neurotransmitters to override its mind-energizing effects. But as I increase both the MeB12 and Folate, I believe I will certainly find this less of an issue.


As Rich pointed out: “If larger dosages of methyl B12 are injected or taken sublingually, apparently it is able to diffuse into the cells and bypass the normal processing, based on your experience.” Once in the cells, I, too may be able to handle larger doses of Folate.

@Freddd, somewhere recently, on another thread, you wondered about finding a geneticist to work with with regard to your family’s genetic profile. My husband’s family’s genes are banked at Dana Farber here in Boston for having ‘Familial Polyposis’ (Colon, stomach cancer) and yet none of their genes have been identified with those health issues as of this time.

Through my reading on this site and a chance connection through a former member, ppodjahski, I discovered the head of the Department of Nutrition at the University of North Carolina, Dr. Steven Zeisel, Harvard/MIT educated, who has worked specifically with the PEMT mutation and its relation to breast cancer, which runs in my family. I put together a thread on my own research here: http://forums.phoenixrising.me/inde...od-of-thanks-to-ppodhajski.40755/#post-656302

I mention Dr. Zeisel because I’ve thought of contacting him myself to see if there is anyone he knows in the Boston area who is working on methylation issues. You might do the same for Utah. It’s obvious that there are a lot of scientists interested in genes and metabolism; we’ve just got to find out who might be interested in working with the public in some way.

@Relentless1k In answer to your question: “If i test my genetics, will that be able to tell if i need high doses or if i could heal on RDA level doses?” I think it could give you a template to work from.

Interestingly, apropos of this, last night as my tight face/bodily jitters intensified, my heart also began to flip around more than it has lately, and the resolution was the same as for the other symptoms I was experiencing: more MeB12.

As we all know, there may be other cofactors limiting my ability to tolerate higher doses of Folate and MeB12 that aren’t specifically interdependent. But, as Freddd has said, these two are the most predictable items, and as such are certainly a good place to start.

You're one step ahead of the game already taking the L-carnitine. But as to the folate vs folinic, I don't know how to parse the reactions except by observation.

Hi Kathevans,

Kind of mind blowing isn't it. As for colon cancer and methylation. It turns out that in folic acid induce blocked methylation that something weird happens and with colon cancer appears to go into a hypermethylation mode for unknown reasons, possibly the cause of all sorts of hyper effects in folate deficiency as reported in a study a few years ago. I have an interest there as my mother is a colon cancer survivor and I have had polyps removed on a colonoscopy. I'm a believer in colonoscopies as a preventive measure.

It's all about finding the correct for the moment balances that are always changing This is a game of skill, at careful self observation and titration to effect. It helps know what needs fast versus slow titrations. The "refeeding syndrome" hypothesis can make that clearer. Good luck. Things can change fast, on a daily basis. On the stages of methylation thrread there is a zones of b12 effectiveness or something like that. If you can't find it I'll put up another. I'm adding to it and will post the newer version soon.

 

[Kathevans]

Hi @Fredd,

Do you happen to know the title of that study on hyper-effects in folate deficiency that may relate to colon cancer? My husband's family grows a surfeit of these polyps. He had to have annual colonoscopies until he suffered a colon perforation when a particularly challenging polyp was being removed. Once he had 1/3 of his ascending colon removed--which was the area of the colon where most of them grew--he now only has to have a colonoscopy every two years. A small benefit for the loss of part of his colon!

I'm thinking more and more about the possibility of a response to the folic acid in veggies. I had a huge salad for dinner and felt as if I was hyperventilating for about ten minutes and still have a slight headache. My husband says it was because we were watching "Homeland," but I don't think I'm that much of a wuss! Does having the vegetables cooked or raw make a difference? Is it primarily the dark green ones?

Oy.

I'll look for the post on the stages of methylation; I've got the Solgar's MeB12 5,000mcg in hand for tomorrow, so I'm all set to begin the adventure. It was the Country Life I had on order that will arrive later this week. I'm not sure which is the better, or if either is what you would term a 5-star. It was what was available. In any case, I'll see how I feel.

Many thanks for your insights.

Ever the student,

K

 

[Freddd]

Hi @Fredd,

Do you happen to know the title of that study on hyper-effects in folate deficiency that may relate to colon cancer? My husband's family grows a surfeit of these polyps. He had to have annual colonoscopies until he suffered a colon perforation when a particularly challenging polyp was being removed. Once he had 1/3 of his ascending colon removed--which was the area of the colon where most of them grew--he now only has to have a colonoscopy every two years. A small benefit for the loss of part of his colon!

I'm thinking more and more about the possibility of a response to the folic acid in veggies. I had a huge salad for dinner and felt as if I was hyperventilating for about ten minutes and still have a slight headache. My husband says it was because we were watching "Homeland," but I don't think I'm that much of a wuss! Does having the vegetables cooked or raw make a difference? Is it primarily the dark green ones?

Oy.

I'll look for the post on the stages of methylation; I've got the Solgar's MeB12 5,000mcg in hand for tomorrow, so I'm all set to begin the adventure. It was the Country Life I had on order that will arrive later this week. I'm not sure which is the better, or if either is what you would term a 5-star. It was what was available. In any case, I'll see how I feel.

Many thanks for your insights.

Ever the student,

K

Hi Kathevans,

I find there is ample folate in cooked vegetables to cause me problems. There are tables of folate content per 100 grams of all the veggies you could want. I was on a 3 year recall, passed that one clean and am now on a 5 year recall.

Once you get going order several brands at a time and then you can try a different brand each week. If there are differences you will see the most active ones and the ones that let symptoms come back or worsen.

I have to dig through a bunch of things to see if I can locate the paper. I do remember either one of the authors or somebody writing about it call folic acid research "very disappointing" because of the inconsistent and highly variable results There are a number of papers I recall reading on hypermethylation from folic acid and some cancers. Google Scholar can probably find a number of them. I'll try to locate amongst downloads etc. Also, some cancers generate their own TC2 to hijack B12, at least that was what was reported. I don't know if colon cancer was amongst them.


Here are a couple of possibilities from a quick search. I haven't looked at them tonight.


Search Results

1. 
   Folic acid and colorectal cancer prevention: molecular ...
   www.ncbi.nlm.nih.gov/...
   National Center for Biotechnology Information
   by A Ströhle - ‎2005 - ‎Cited by 28 - ‎Related articles
   Folic acid and colorectal cancer prevention: molecular mechanisms and ... has been associated with site- and gene specific DNA hypo- and hypermethylation.
   impact of folate deficiency on DNA methylation and colon ...
   www.ncbi.nlm.nih.gov/...
   National Center for Biotechnology Information
   by YI Kim - ‎2005 - ‎Cited by 218 - ‎Related articles
   ... impact of folate deficiency on DNA methylation and colon cancer susceptibility. ...In contrast to genetic changes observed in cancer, epigenetic changes are ...Methylation*; Epigenesis, Genetic/genetics*; Folic Acid Deficiency/genetics* ...

1. 
   

 

[Kathevans]

Hi Fredd,

I think there are many here who would be interested in this research. I know I am.

Good news in the second one listed:
In contrast to genetic changes observed in cancer, epigenetic changes are gradual in onset and are progressive, their effects are dose-dependent and are potentially reversible. These observations present new opportunities in cancer-risk modification and prevention using dietary and lifestyle factors and potential chemopreventive drugs. In this regard, folate, a water-soluble B vitamin, has been a focus of intense interest because of an inverse association between folate status and the risk of several malignancies (in particular, colorectal cancer) and of its potential ability to modulate DNA methylation.

Nutrigenomics is the science of the future.

And isn't that exactly what those veggies are doing, too, even if in a way not to our liking! I'll find that list you suggest.

 

[Freddd]

Hi Fredd,

I think there are many here who would be interested in this research. I know I am.

Good news in the second one listed:
In contrast to genetic changes observed in cancer, epigenetic changes are gradual in onset and are progressive, their effects are dose-dependent and are potentially reversible. These observations present new opportunities in cancer-risk modification and prevention using dietary and lifestyle factors and potential chemopreventive drugs. In this regard, folate, a water-soluble B vitamin, has been a focus of intense interest because of an inverse association between folate status and the risk of several malignancies (in particular, colorectal cancer) and of its potential ability to modulate DNA methylation.

Nutrigenomics is the science of the future.

And isn't that exactly what those veggies are doing, too, even if in a way not to our liking! I'll find that list you suggest.

Hi Kathevans,

The specifc one I had in mind isn't that one, it was about 6-8 years newer. However, Metafolin was still totally ignored in the study, no comparative results. In the earlier study it likely wasn't available during the designing period.

In this regard, folate, a water-soluble B vitamin, has been a focus of intense interest because of an inverse association between folate status and the risk of several malignancies (in particular, colorectal cancer) and of its potential ability to modulate DNA methylation.

Yes. What was different was either an author or a review expressing disappointment in folic acid research results because "folic acid doesn't act the way it is supposed to". It was the first time I had seen a researcher saying that either folic acid was "wrong" or the theory was "wrong", or both.

I was reading everything I could find as I have a very personal familial interest in it. My first colonoscopy was very revealing. I checked out the seriousness of the one polyp the found to get a person a 3 year recall and I was getting close to the very serious severity. After the second I got a 5 year callback because there was nothing, and I had been on 8 mg or more Metafolin the whole time.

Maybe you could post some good quotes from it here in this thread.

 

[Relentless1k]

Ill have to read all those posts tomorrow, too tired atm.

@Freddd Can you copy paste your info on why you should not take NAC/glutathione because it binds to b12. Also was that originally your or Rich's theory?

Thanks

 

[Freddd]

Ill have to read all those posts tomorrow, too tired atm.

@Freddd Can you copy paste your info on why you should not take NAC/glutathione because it binds to b12. Also was that originally your or Rich's theory?

Thanks

It was a report of experience of 10 people directly who did a trial, including me, nobody's hypothesis or theory. We had to know and had no idea it would be so damaging. I take sufficient B12 that I have a "usual" level visible in my urine. When on 10mg doses of MeCbl injection 3x per day, adding glutathione makes my urine look like 60 mg injections. It is highly visible being ejected from the body. Folate deficiency symptoms started increasing in 2 hours and got more severe daily and started causing additional demyelination in 2 weeks. I did this with 9 other people taking different precursor forms, whey, commercial products. Every one of the 10 people had a full group of increased symptoms, the only difference was me at 2 hours and others up to 2 weeks depending upon dose and form. Also, for those with certain polymorphisms in certain genes, and it is unknown how many variations there are, it has a hallmark symptoms of "catastrophic b12 deficiency" upon taking glutathione because of a problem with the CblC protein that supposedly protects the B12 from the glutathione. The effect for be is almost instant. Everybody in the N=10 trials had the similar results in the end though I had the most rapid and severe reaction and the most damage. One man was a vegetarian. Hey at the beginning so was I. So everybody each took a different path to deficiency, all had good responses and a lot of healing with MeCbl, AdoCbl, l-methylfolate and carnitine and we all had the symptoms return; folate first then MeCbl and then AdoCbl.

Also, the result is often called "NAC detox" and "glutathione detox" which turns out to be severe folate deficiency symptoms followed by both kinds of B12 deficiencies. Just look them up, plenty of google "hits" and descriptions that can be looked up.

oing Glutathione - Strong Reactions! | ProHealth Fibromyalgia, ME ...
forums.prohealth.com › ... › Fibromyalgia Main Forum
Aug 4, 2010 - 21 posts - ‎10 authors
This includes NAC, any combination suppliment with NAC or reduced ... Then the next day all CFS and fibro symptoms are amplified many times. ..... treatment lessens the severity of the glutathione induced detox symptoms.

ebra's Natural Gourmet | NAC: One of the Best Supplements
debrasnaturalgourmet.com › Adam's Corner
Mar 1, 2010 - For immune function and detoxification, plus liver health, mental health,.... only 25% of the group receiving the NAC developed symptoms, vs.
Here are descriptions of "detox" from elsewhere.

Also Deplin (straight Metafolin) has "no side effects different from placebo" where as Cerefolin-NAC (Metafolin with NAC) has side effects from the NAC that amount to methyltrap which is to say folate deficiency symptoms as on the group 2 and 3 on the list.

Version 1.4 09/25/2015

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 - Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency, partial methylation block to methyltrap on 1 or more internal triage levels


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, Increased itchy acne on scalp and face, Skin peeling around fingernails, Skin cracking and peeling at fingertips,


IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation
Headache, Increased malaise, Fatigue


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.

 

[Kathevans]

@Freddd I was reading the thread on The Stages of Methylation and Healing and came across a reference to ALS:

5. ALS – Low CSF cobalamin, elevated HCY, elevated MMA (usually indicates low adb12 or Carnitine

I hadn't thought of methylation protocols with regard to this horrible disease, but of course. It was an old friend of my husband's who had ALS who pointed me in the direction of genetic testing and hence to this wonderful site a year or so ago.

Now I have another friend with ALS. Can you point me toward any relevant information that I might pass along to him?

Thanks so much...

K

 

[Relentless1k]

@Freddd Thanks again, so much useful info that im sure you are tired of repeating to everyone who asks.

One last question and then ill stop wasting your time for now: Is glutathione ever useful, for example if i have a period of overexercise, i could use it for a day or two to recover faster? (While still taking folate and b12 to prevent deficiency) Even if it does cause a deficiency, its not dangerous to have a b12 and folate deficiency for 2 days or so.

Exercise can deplete glutathione and im hoping to one day get well enough to be an athlete again.. Was thinking glutathione could be a good recovery tool

 

[Freddd]

@Freddd I was reading the thread on The Stages of Methylation and Healing and came across a reference to ALS:

5. ALS – Low CSF cobalamin, elevated HCY, elevated MMA (usually indicates low adb12 or Carnitine

I hadn't thought of methylation protocols with regard to this horrible disease, but of course. It was an old friend of my husband's who had ALS who pointed me in the direction of genetic testing and hence to this wonderful site a year or so ago.

Now I have another friend with ALS. Can you point me toward any relevant information that I might pass along to him?

Thanks so much...

K

Hi Kathevans,

Yes, people with ALS do have CSF B12 deficiency with perhaps the highest CSF homocysteine and highest CSF MMA of any of the group. Perhaps copper figures in there too, affecting upper motor neurons. I don't have any idea what "X" is, what it is that attacks the lower motor neurons. Everything I say here about ALS is speculation.

As I have described other places my grandfather survived 30+ years after diagnosis in 1942. My grandmothers old German cook made her nerve stew, 5 pounds of liver a day cooked down to a concentrate with meat and veggies and potato added to make a thick stew. If that was in fact the cause of the very slow progression his disease had then I would look at the trace minerals found in liver. There is an ALS forum similar to this one on which I posted everything I knew about the active protocol and the importance of finding the right form of MeCbl. In my recent experience of copper deficiency, nobody could recognize it and it did affect my upper motor neurons and other areas.

I have spent 30,000 hours working this whole thing out attempting to account for and reverse every single symptom I had. Actually that is a figure of speech as each nutrient,. in a group of nutrients, dealt with a group of symptoms. But no symptom was too small to ignore. I feel pretty good about nutrients dealing with MS, Parkinson's, FMS, CFS, ME, Supra Nuclear palsy but even then there is a lot of customizing for everybody and tremendous variation. ALS certainly has many of the in common symptoms of all of these but something else too. And it is something that typically hits harder and faster. I sorry I don't have any better answer. I've never watched a person with early ALS work with the active things nor have I taken a lifetime high definition history of a person with ALS.. The suggested consensus diet on that site, included most everything I would use but also NAC and/or glutathione. Also they were not paying much attention to methylfolate or the differences between carnitines or the differences between various forms of MeCbl. Good luck with your friend. I had an old high school friend die from ALS this past year.

 

[Kathevans]

Hi @Freddd I've read the story about your grandfather, but had forgotten it was ALS that he had. Amazing. I do know there's long tail at one end of the bell curve where Stephen Hawking exists. It's more likely to be fast, though, isn't it?

I've forwarded your thoughts to my friend and also alerted him to this site and many of the threads that go into depth about the Deadlock Quartet, as well as a link to your newest ideas about the Refeeding Syndrome.

For all this, my deepest thanks.

As to my continued journey--I'm back up to 1,600mcg folate and have upped the MeB12 to 6,000mcg divided into two doses. I'll continue to try to make it at least three. I had some feelings of being hyper during the day, but once the Folate Insufficiency symptoms of runny nose and headache settled down before dinner--and I refused to give my body any more of these donors for the day (to help sleep!) I feel fine now. Not even any hyperventilation over my salad tonight. This is still a mystery looking for a solution; but I'll keep staring at it and keep my notes. Eventually I'm sure it will become clear what the symptoms are.

Happy holidays to all!

 

[Bdeep86]

@Freddd did you have a ceruloplasmin blood lab run?

 

[Freddd]

@Freddd did you have a ceruloplasmin blood lab run?

That is likely maybe Thursday.

 

[Freddd]

@Freddd Thanks again, so much useful info that im sure you are tired of repeating to everyone who asks.

One last question and then ill stop wasting your time for now: Is glutathione ever useful, for example if i have a period of overexercise, i could use it for a day or two to recover faster? (While still taking folate and b12 to prevent deficiency) Even if it does cause a deficiency, its not dangerous to have a b12 and folate deficiency for 2 days or so.

Exercise can deplete glutathione and im hoping to one day get well enough to be an athlete again.. Was thinking glutathione could be a good recovery tool

I found that glutathione cause widespread methyltrap within 2 hours despite 4x7.5mg daily injected and about 4000mcg daily of Metafolin , to twice as much MeCbl and Metafolin as soon as I stopped and it took several days to go out of methyltrap and to retain the MeCbl in my body with normal amount of urine b12 instead of tripling the output of B12.

 

[suraj]

It was a report of experience of 10 people directly who did a trial, including me, nobody's hypothesis or theory. We had to know and had no idea it would be so damaging. I take sufficient B12 that I have a "usual" level visible in my urine. When on 10mg doses of MeCbl injection 3x per day, adding glutathione makes my urine look like 60 mg injections. It is highly visible being ejected from the body. Folate deficiency symptoms started increasing in 2 hours and got more severe daily and started causing additional demyelination in 2 weeks. I did this with 9 other people taking different precursor forms, whey, commercial products. Every one of the 10 people had a full group of increased symptoms, the only difference was me at 2 hours and others up to 2 weeks depending upon dose and form. Also, for those with certain polymorphisms in certain genes, and it is unknown how many variations there are, it has a hallmark symptoms of "catastrophic b12 deficiency" upon taking glutathione because of a problem with the CblC protein that supposedly protects the B12 from the glutathione. The effect for be is almost instant. Everybody in the N=10 trials had the similar results in the end though I had the most rapid and severe reaction and the most damage. One man was a vegetarian. Hey at the beginning so was I. So everybody each took a different path to deficiency, all had good responses and a lot of healing with MeCbl, AdoCbl, l-methylfolate and carnitine and we all had the symptoms return; folate first then MeCbl and then AdoCbl.

Also, the result is often called "NAC detox" and "glutathione detox" which turns out to be severe folate deficiency symptoms followed by both kinds of B12 deficiencies. Just look them up, plenty of google "hits" and descriptions that can be looked up.

oing Glutathione - Strong Reactions! | ProHealth Fibromyalgia, ME ...
forums.prohealth.com › ... › Fibromyalgia Main Forum
Aug 4, 2010 - 21 posts - ‎10 authors
This includes NAC, any combination suppliment with NAC or reduced ... Then the next day all CFS and fibro symptoms are amplified many times. ..... treatment lessens the severity of the glutathione induced detox symptoms.

ebra's Natural Gourmet | NAC: One of the Best Supplements
debrasnaturalgourmet.com › Adam's Corner
Mar 1, 2010 - For immune function and detoxification, plus liver health, mental health,.... only 25% of the group receiving the NAC developed symptoms, vs.
Here are descriptions of "detox" from elsewhere.

Also Deplin (straight Metafolin) has "no side effects different from placebo" where as Cerefolin-NAC (Metafolin with NAC) has side effects from the NAC that amount to methyltrap which is to say folate deficiency symptoms as on the group 2 and 3 on the list.

Version 1.4 09/25/2015

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 - Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency, partial methylation block to methyltrap on 1 or more internal triage levels


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, Increased itchy acne on scalp and face, Skin peeling around fingernails, Skin cracking and peeling at fingertips,


IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation
Headache, Increased malaise, Fatigue


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.

Hi @Freddd

I have a emergency here, pls help. i think i took Whey for 5 days. and stopped it immediately. now i have folate deficiency. im already at 45mg of folate and still have folate deficiency. and b12 is not working. and have pin and needle sensation and folate deficiency.

does any one know how to clear up this and come out of this trap. Please please please help.