• 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 (FM), 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.

Active B12 Protocol Basics

Messages
24
Hey everyone

I have a question regarding testing for the methylation mutations. I hope this is the right place to ask this

I haven't done my genetic testing yet, still have to put the money together because it's insanely expensive where I live but I am having terrible histamine problems and chemical sensitivities that are only marginally made better with sulphur foods and I am afraid I might have a problem converting folate to methyl or possibly even B12, as my only source of b12 is meat. The only folate suplements I have been on were folic and folinic. I can't tolerate legumes or greens for a long enough period to even see if I can get benefits from it, but my condition hasn't gotten any better or worse since introducing folinic acid at a 400mcg dosage.

Is there a way I can test with supplements to see if I have that problem? I can purchase 5-Methyltetrahydrafolate with a capsule that contains 400mcg so its not a massive megadose. If I take 1/4, 1/2 etc and have ANY reaction, good or bad, is that a possible sign that I need methylfolate and the other forms I have tried were useless for methylation?

It's only been 5 days since I started the folinic acid and it seems I may have been folate deficient for a few months as the amount of folate in the foods I was sporadically eating were only around 50%, so I assume it might take a while to see any effects from supplementing even folinic?

I did get a CBC done when I was folate deficient and my red blood cells are actually microcytic and my homocystiene was 10.3 (reference 5.0-15.0 umol/L) but I wasn't eating that much protein at the time.

Thanks
 
Last edited:

pamojja

Senior Member
Messages
2,384
Location
Austria
Is there a way I can test with supplements to see if I have that problem?

I believe that's the only viable way. Even if you had genetic testing showing any potential problems in converting folic acid, it still wouldn't tell you if you would overcome that problem with 400mcg or 5000mcg per day of methylfolate. Only experimenting with slowly increasing doses, monitoring symptoms and regular laboratory markers does.

You should always take some B12 together with folate supplementation.

Where do you life?
 
Messages
24
I believe that's the only viable way. Even if you had genetic testing showing any potential problems in converting folic acid, it still wouldn't tell you if you would overcome that problem with 400mcg or 5000mcg per day of methylfolate. Only experimenting with slowly increasing doses, monitoring symptoms and regular laboratory markers does.

You should always take some B12 together with folate supplementation.

Where do you life?

I am in South Africa.


If I took a small dose of methylfolate and I get no reaction whatsoever(good or bad), does that mean I don't have a problem converting to methylfolate since I am just giving the body what it already has and uses currently?

Is there no way to test methylfolate and methylcobalamin separately to see first where the problem lies?

Can I not take a small dose of methylfolate for say 2 days to gauge any reaction then stop and wait a few days and try methylcobalamin at a small dose for 2 days to gauge any reaction to find which one I react towards?

Cheers,

EDIT: I have been folate deficient for a few months now, except for some folate from greens and legumes when I can eat them, so I figured taking the folinic acid, I should see SOME reaction but it's just been business as usual, no good OR bad reaction, like it does absolutely nothing :/
 
Last edited:

pamojja

Senior Member
Messages
2,384
Location
Austria
Everyone is different. But of the 3 main B vitamins I take for lowering homocysteine, I only 'felt' B6 above 200mg, in that I've got dream-recall back (despite having been deficient as a vegetarian for 30 years in B12, I never felt anything from supplementing it).

Choline at one time above 500mg/d gave me tension in my chaw. Now tolerance is increasing again. That's all I've ever 'felt' of any B-vitamins. There are others who are much more sensitive. Only you can find out if you are.
 
Last edited:
Messages
24
Everyone is different. But of the 3 main B vitamins I take for lowering homocysteine, I only 'felt' B6 above 200mg, in that I've got dream-recall back.

I will keep all this in mind, thanks. Is dream recall methylation specific or something specific to B6 because I only get B6 through foods but the very night I took the folinic acid and every night since then, I have dream recall again, which hasn't happened in month and I changed nothing diet wise either
 

pamojja

Senior Member
Messages
2,384
Location
Austria
B6 specific. But B-vitamins are of course all interrelated, and anyone missing might impede every other of the Bs. That why it's not only advisable to supplement B12 with B9 (which otherwise may mask a B12 deficiency), but better also with a B-complex with some of all B vitamins.

B_metabolism.png
 
Messages
95
Hi Fred,
I have a Sulfur Intolerance , SUOX block. I read somewhere that Methyl B12 injections are not good for me but Hydroxy is better. Is that also your knowledge? Just want to double check before I schedule the injections.
 

pibee

Senior Member
Messages
304
so my very ugly delayed sleep disorder i have since childhood/adolescence, went few days in remission on methylB12, Enzymatic Therapy brand, very high doses (10mg + ). But it didnt stay . This is only thing that ever worked for my sleep shit, EVER.

it still helps but not like first days when i'd fall asleep at 10pm regardless of anything.

It also extremely helps my fatigue!

should i keep upping my dose or what? @Freddd ?

methylfolate i have ugly nasty experience with, think it made me half psyhotic, so i avoid it for now.
 
Messages
3
@Freddd

Hello, I am newly registered to this forum - and I have a question I was hoping you
(or others who read this) could help me with.

I have the 677T MTHFR mutation. I also have a history of 20 years (and counting) with health problems
(fatigue / toxicity / heavy metal toxicity / inflammation / high ammonia problems).

Because of this I have tried on multiple occations to start up Metafolin.

My problem is that if I take a 400mcg tablet, crush it, and take less than 1/10th of the tablet
(what amounts to 20-40mcg) I get such a bad migraine that I have to lie in for 2 days and call in sick for work.
People may think I am exaggerating, but I am not unfortunately.
I have taken potassium, B12 in various forms, and B-complexes in tandem with my attempts and made sure my B12 levels are good before starting the Metafolin - but this does not make a difference.

Another strange detail I feel I have to mention is that I have this re-occuring numbness in my nose / face.
I initially thought this could have to do with thyroid problems, but so far my GP has not been able to find thyroid problems to explain this. I also think from observation that this feeling got worse every time I attempted Metafolin.

So my questions are:
1. Any suggestions to what could be going on here?
2. Is it a realistic alternative that I simply cannot tolerate methylfolate ever in my life
(I am pretty confident it is not an allergic reaction) ?
3. It's my impression that folinic acid isn't generally favoured in this thread,
but in my particular situation where I cannot bear methylfolate: could folinic acid potentially be of some value?
(since some folinic acid gets converted to methylfolate in the body),
and if it has any merit - at what dosages should one be attempting?
4. I also consider buying the Metabolics B-complex drops, and titrating extremely slowly up from miniscule dosages like 5-10mcg. Is this a good idea or a bad idea given what I described above?
5. Can combining folinic acid and methylfolate work for some people?

I have to say that methylfolate does not feel healthy or good for me in any way.
It really feels like I am wrecking havoc on my body every time I attempt it, and I am dead scared of attempting another time.

In other words; this is not something I will be able to "work through".


Kind regards
 

Freddd

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

Hello, I am newly registered to this forum - and I have a question I was hoping you
(or others who read this) could help me with.

I have the 677T MTHFR mutation. I also have a history of 20 years (and counting) with health problems
(fatigue / toxicity / heavy metal toxicity / inflammation / high ammonia problems).

Because of this I have tried on multiple occations to start up Metafolin.

My problem is that if I take a 400mcg tablet, crush it, and take less than 1/10th of the tablet
(what amounts to 20-40mcg) I get such a bad migraine that I have to lie in for 2 days and call in sick for work.

People may think I am exaggerating, but I am not unfortunately.
I have taken potassium, B12 in various forms, and B-complexes in tandem with my attempts and made sure my B12 levels are good before starting the Metafolin - but this does not make a difference.

Another strange detail I feel I have to mention is that I have this re-occuring numbness in my nose / face.
I initially thought this could have to do with thyroid problems, but so far my GP has not been able to find thyroid problems to explain this. I also think from observation that this feeling got worse every time I attempted Metafolin.

So my questions are:
1. Any suggestions to what could be going on here?
2. Is it a realistic alternative that I simply cannot tolerate methylfolate ever in my life
(I am pretty confident it is not an allergic reaction) ?
3. It's my impression that folinic acid isn't generally favoured in this thread,
but in my particular situation where I cannot bear methylfolate: could folinic acid potentially be of some value?
(since some folinic acid gets converted to methylfolate in the body),
and if it has any merit - at what dosages should one be attempting?
4. I also consider buying the Metabolics B-complex drops, and titrating extremely slowly up from miniscule dosages like 5-10mcg. Is this a good idea or a bad idea given what I described above?
5. Can combining folinic acid and methylfolate work for some people?

I have to say that methylfolate does not feel healthy or good for me in any way.
It really feels like I am wrecking havoc on my body every time I attempt it, and I am dead scared of attempting another time.

In other words; this is not something I will be able to "work through".


Kind regards

Hi Roslejuice.,

You are most likely in my opinion,suffering severe paradoxical folate deficiency. So, methylfolate tends to start up cell formation in hundreds of symptoms at once. The lower the dose the more severe most of the symptoms get and the fewer that show any improvement. I spent 7 years solving the dose proportional relationship between symptoms and dose. I started titrating at 200 mcg of methylfolate and suffered massively for years doing cautious increases in dose. In the Deplin studies with a minimum dose of 7.5 mg of Metafolin there were none of these terrible refeeding symptoms. In the long study of this, 35,000 hours since 1978. That too would have been my experience if I could have afforded that and been prescribed, based on my later experience. From 4 mg dose and up the number of symptoms dropped from 200+ and worsening to falling at 4 mg and dropped to only a couple of symptoms from the original more than 200, and dropped seriousness and discomforts, including terrible 3-5 day headaches each 2 weeks for years. At 45 mg/day (15 mg TID) I reach the last symptoms, edema and increased MCV, both correcting. Of course this also requires a lot of other things like like potassium and so on. I worked out a way to manage the intensity of the refeeding syndrome which can me quite severe even with management. Without doing it in the right orders, considerable damage can occur with micronutrient deficiency. I had connective tissue damage, liver damage, neurological damage, all from "borderline" copper deficiency by tests. Then it drops like a rock when cell formation needing copper tarts all at once and the serum level drops like mad. However, one needs to avoid some items to be more probability to form cells.

An up to date version of a couple of lists of symptoms and explanatory verbiage is at this link. https://www.quora.com/Has-someone-u..._filter__=all&__nsrc__=1&__snid3__=1808215186

Match up all your symptoms and and see if you have the same patterns of symptoms. There is a lot there about how to manage the daily changing symptoms and what they could nmean in terms of the changing patterns. Each person learns their how their patterns occur against the background of the larger symptoms sets. Be well.
 
Messages
3
Hi Roslejuice.,

You are most likely in my opinion,suffering severe paradoxical folate deficiency. So, methylfolate tends to start up cell formation in hundreds of symptoms at once. The lower the dose the more severe most of the symptoms get and the fewer that show any improvement. I spent 7 years solving the dose proportional relationship between symptoms and dose. I started titrating at 200 mcg of methylfolate and suffered massively for years doing cautious increases in dose. In the Deplin studies with a minimum dose of 7.5 mg of Metafolin there were none of these terrible refeeding symptoms. In the long study of this, 35,000 hours since 1978. That too would have been my experience if I could have afforded that and been prescribed, based on my later experience. From 4 mg dose and up the number of symptoms dropped from 200+ and worsening to falling at 4 mg and dropped to only a couple of symptoms from the original more than 200, and dropped seriousness and discomforts, including terrible 3-5 day headaches each 2 weeks for years. At 45 mg/day (15 mg TID) I reach the last symptoms, edema and increased MCV, both correcting. Of course this also requires a lot of other things like like potassium and so on. I worked out a way to manage the intensity of the refeeding syndrome which can me quite severe even with management. Without doing it in the right orders, considerable damage can occur with micronutrient deficiency. I had connective tissue damage, liver damage, neurological damage, all from "borderline" copper deficiency by tests. Then it drops like a rock when cell formation needing copper tarts all at once and the serum level drops like mad. However, one needs to avoid some items to be more probability to form cells.

An up to date version of a couple of lists of symptoms and explanatory verbiage is at this link. https://www.quora.com/Has-someone-u..._filter__=all&__nsrc__=1&__snid3__=1808215186

Match up all your symptoms and and see if you have the same patterns of symptoms. There is a lot there about how to manage the daily changing symptoms and what they could nmean in terms of the changing patterns. Each person learns their how their patterns occur against the background of the larger symptoms sets. Be well.

Thank you @Freddd for taking time to answer. I very much appreciate it.
(even though I was hoping for a an answer not involving more Metafolin :D).
2 decades of trialing and trying to make sense of things is a lonely journey, and all the insecurities it produces even worse - on top of already being very ill.

Attempting to go straight to a high dose of Metafolin is a very problematic thing for me to venture due to the sheer terror small dosages has produced up until now - and the terror the thought of what a high dosage with an equivalent increase in symtpoms produces (if that were to happen instead of a decrease in symptoms).

Anyways, I will report any new findings in here when and if they occur.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
@roslejuice
My experience was that every dose under 4mg was terrible and miserable without letup if a person has healing going.. If I believed it would get worse with dose increase I never would have found that the USEFUL threshold is 4mg or so. I have never seen anybody not have trouble with those small doses. The longer the low dose and slower the titration the more sadistic it is. There is a KNEE of effectiveness which is not unusual. There are antidepressant drugs that have such knees. Lots of things do. Sorry I can't get this formatted. The 10+ on the end of line is severity of refeeding symptoms, crazy severe for all doses under 4 mg. Then the number and severity drops fast. Sorry about the formatting. 200 is number of affected symptoms approx. Where it drops from 200 symptoms to 20 symptoms is between 1600 mcg and 4 mg., the knee.

Dose MCV # symptoms severity 0-10
folic acid,CyCbl 33 years MCV = 99.8 50>>200 10+ MeCbl replaced CyCbl after 33 years
folic acid, MeCbl MCV = 99.8 200 10+- crazy severe
folic acid, MeCbl, AdoCbl MCV = 99.8 200 10+- crazy severe
400 mcg MF & folic acid MCV = 99.8 200 10+- crazy severe
800 mcg MF & folic acid MCV = 99.8 200 10+- crazy severe
1600 mcg MF MCV = 99.8 150 10+- crazy severe
2.4 mg (800 TID) MCV = 99.5 100 9- estimated start of falling copper symptoms,refeeding syndrome
4mg/day (800mcg 5 times/day MCV = 99 20 7- 180 symptoms very diminished, 20 not so bad

8mg/day (portions TID) MCV = 98 10 5-
16mg/day (4mg QID) MCV = 97.1 4-5 3-
30mg/day (15mg BID) MCV = 94.6 2-3 2-
30mg/day, copper falls to <60 MCV = 100.7 2-3 7- switched to different form of copper
30mg/day, copper increases to 66 MCV = 97.x 2-3 3-
30mg/day. CU increases 74 MCV=97.x 2-3 3-
45mg/day (15mg TID) Cu to 83 MCV = 91.7 0-1 0- 1-
45mg/day (15mg TID) Cu to 67 MCV = 97 0-1 0- 1-
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hi Fred,
I have a Sulfur Intolerance , SUOX block. I read somewhere that Methyl B12 injections are not good for me but Hydroxy is better. Is that also your knowledge? Just want to double check before I schedule the injections.

@calexis6666,

HyCbl causes methyltrap in people like me. If you can tell the difference between MeCbl and HyCbl you desperately need the MeCbl and AdoCbl becasue your body is unable to deliver COB[II] too your brain at least and maybe your body as well. It will start refeeding syndrome with 200 deficiency symptoms of misery, late and potassium insufficiencies when and where they are needed, bottlenecks. If HyCbl turns on healing for you, causes refeeding symptoms, then type doesn't matter. If it causes methyltrap symptoms, (folate/b12 deficiency symptoms) riled up by HyCbl but no low potassium, it is unable to use folate in the cell and fails with acne type lesions in a day or two. These are my opinion from 35,000 hours of studying this and working it out the hard way. The harder the MeCbl hits, the more you are responding and , must take care refeeding syndrome otherwise you can be damaged by low potassium and even die from it. Here is a link to lists of symptoms for where you are now and after starting cell making, which highlights the bottlenecks as you reach them. One needs to be preventing micronutrient deficiency damage as the basic cell making progresses. It takes about a year to rehab the TransCobalamin Receptor (MY EXP{ERIENCE, never heard of anybody else restoring TCR) with making cells with MeCbl (only replacement in cell that replaces COB[II] in cell making or AdoCbl in mitochondria, also substitute for COB[II]. After the TCR is rehabbed you won't be able to tell the differences between B12 if it works for you as it did for me in this past year or so.. It can all be good. Then refeeding syndrome gets even worse as COB[II] is "6 star" cbl. As one heals things different forms of various nutrients become necessary as different pathways start working. Be well. Read the link before trying anything.

https://www.quora.com/Has-someone-u..._filter__=all&__nsrc__=1&__snid3__=1808215186
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
Thank you @Freddd for taking time to answer. I very much appreciate it.
(even though I was hoping for a an answer not involving more Metafolin :D).
2 decades of trialing and trying to make sense of things is a lonely journey, and all the insecurities it produces even worse - on top of already being very ill.

Attempting to go straight to a high dose of Metafolin is a very problematic thing for me to venture due to the sheer terror small dosages has produced up until now - and the terror the thought of what a high dosage with an equivalent increase in symtpoms produces (if that were to happen instead of a decrease in symptoms).

Anyways, I will report any new findings in here when and if they occur.

@ruslejuice I'd recommend folinic instead of methylfolate. It's helped me with sleep issues big time, while methylfolate drives me -- and many others -- to extreme anxiety, irritability and elevated stress levels, which have nothing to do with refeeding syndrome (which by the way is typically treated with high-dose thiamine, something Freddd demonizes as he does folinic).

He also demonizes glutathione, which ironically is what is produced by improving methylation and transsulfuration. The only time I was able to handle methylcobalamin injections was when I was concurrantly given nebulized glutathione back in 2003.

Note in Freddd's reply, that he says "HyCbl causes methyltrap in people like me." In many others it's been the only form of B12 they can tolerate. We're all different, there's no one 'plan' or 'protocol', and what works for Freddd, may be very harmful for others.

And the same goes for my advice. What helps me may not be helpful or may even be harmful for others.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
@dannybex

There is a very fast way to tell now. If HyCbl or CyCbl causes acne it is causing methyltrap. Then, MeCbl will reverse it in a few days,. The glutathione causing "catastrophic B12 deficiency" is characteristic of certain problems that may be misidentified. So much in B12 research is seriously messed up.

And the language used hides the problem. The understanding of the absorption system has been screwed up for decades.

So for years the research has been pushing the TC1, TC2, TC3, HTC1, HTC2, HTC3 and ID, and expensive use of ATP and enzymes to convert HyCbl and CyCbl to the required COB[II].

Recent research is changing all that. Say goodby to TC1-3 and HTC1-3. Instead there is Haptocorrin in place of TC1 and TC3 and HTC2 and HTC3. And then there is NOW TransCobalamin Receptor (TCR) which strips the ligand right there in the receptor and delivers COB[II] which is used for both mitochondria and methylation locations. A characteristic of people with TCR deficiency is that the person can tell the difference between the 1 in 10 batches of MeCbl that will substitute functionally for COB[II] in methylation locations and AdoCbl can be used in mitochondria locations. I could distinguish the AdoCbl from the MeCbl and had separate distinguishable effects. If MeCbl varies for a person from 0 to 5 stars, then COB[II] is at least 6 stars, and when TCR is present in sufficient quantity to turn on CNS healing.

I am again speaking from experience. I learned how to generate/regenerate TCR. Prior to this I had never seen or known of anybody restoring TCR and B12 usage becoming more normal. I can no longer tell the difference between one batch of MeCbl and another or the difference of AdoCbl, they both become "6 star" COB[II]. I have experienced COB[II] startup 7 times in my life. The first 4 times gave me refeeding syndrome from hell, potentially nearly killing me as I had no idea what to do or manage it. Adelle Davis was right. Liver is a miracle food. It has all of the nutrients, at least 5 in a deadlock quintet,or more, of what the researchers were looking for in the liver concentrate as being "protein mystery factor". They assumed that a single item was their mystery factor. It wasn't and isn't.

So last I told you I was taking 10 mg subcutaneous injections 3 times a day and could tell the difference between 2 and 3 times a day. I was getting very little into the CNS and Cbl disappeared from it very quickly. This is a brute force way to get barely enough and barely good enough Cbl into the CNS for healing. It was a desperation from an almost non-working cobalamin system.

That dose of 30mg a day is 210 mg a week has kept me alive going face to face with copper deficiency and lots of damage from that and who knows what damages from other micronutrient metals deficiencies.

What I found was I had to take the whole group of micronutrient but not all together. Vitamin C in some quantities blocks copper absorption. Zinc interferes with copper and other micrometals absorption. Iron should be taken on lky if you need it and separately from all kinds of things and it interferes with a lot of things. Copper interfere with other micronutrients absorption. It took me 7 years to titrate the methylfolate and how it affects the multi compartment usage pattern, the paradoxical folate deficiency is a part of refeeding syndrome with bottlenecks. The 400-800 mcg dose for folic acid was thought to be safe. It isn't for me. Even a month of 45 mcg per day of folic acid was able to build up to a level it could block 45mg of Metafolin enough to makes various skin lesions.

It took 7 years for me to almost solve my copper situation and the pattern of serum falling with copper healing starting up by compartment doing more damage other than where it was healing.

All of these things and the rest of the micronutrients were required to be able to build TCR and possibly other micronutrient receptors. It wasn't easy to be able to absorb all the micronutrients.

Last August I had some fierce refeeding syndrome by going up to 7000 feet altitude starting red cell making, and it was the worst I ever have had at 7000 feet. It wasn't altitude sickness, it was refeeding going hypokalemia becasue of altitude. Since then I have been in managed refeeding syndrome.

The BIG change occurred in February, I had COB[II] neurological startup and it was immediately noticeable. It had turned off 4 years before, the 5 star MeCbl was no longer adequate.

NOW I am at 10 mg of MeCbl per week from 210 mg, and is working the BEST I have ever had and have caught up on the refeeding syndrome, bottleneck style, shortage of delivered item to where needed. I am still titrating dose and I am trying various patterns and durations and amounts but I may find that as I grow more TCR I might need only a mg per week or something. I don't know. It doesn't happen overnight. It takes specific ways to "encourage" the TCR to be grown.

I haven't tried any HyCbl yet. I can do that by exposing a syringe to light as I have in the past. If the TCR is fully operating as it should, the spoiled MeCbl ought to be as effective as MeCbl and not cause acne.

It was RichVank, who, in private conversations, told me he thought it was the micronutrients. He was right, and very complicated. I learned how to absorb and use the micronutrients to rebuild the TCR, intentionally as it wasn't happening accidently and I know of nobody who has done so. Copper was a major and complicated bottleneck and that had to be fixed before I could grow the TCR. As far as I know I need every one of the nutrients on the list and if my body doesn't produce COB[II] my body had enough good enough MeCbl to have healing in the CNS in order to grow the TCR in the CNS and it also stores the COB[II] in the TCR and it is out of the serum and not vulnerable to being excreted by the kidneys which is a very expensive way to do business, without protecting the B12.

With the TCR for the COB[II] to sit in it would theoretically protected from the glutathione. The amounts of B1, B2, B3 and P5P appear to drive some things and for whatever the reason my body has been very poor at maintaining equilibrium. P5P caused high hematocrit after my testosterone level went up by 25% when my copper came up off the bottom. It can get very messy. Also, as copper went up which L-carnitine I had to use changed. Also, for entirely unknown reasons I have to switch from Metafolin to Quatrefolic or back as each in turn loses effectiveness to the other. Now if you look at the specifics, they form a pattern of responses that indicates a specific pattern of symptoms and responses. Some people have the same pattern to the letter, others have quite different patterns,. each one as specifically repeatable by people who match the patterns when it is mapped. So your reasons for copper problems may be the same or different than mine. I have been tracking my patterns since 1978 and have learned mine very well. That's why it is criteria based titration and customized delivery and everything. Lots of [people match the folate., with low doses of methylfolate increasing the number of deficiency symptoms and seriousness while healing some. If a person isn't aware that folate can produce deficiency and healing in different parts of the body at the same time will NEVER figure it out. That comes from from research that notred the problem and nailed it down in the early 90s as "Paradoxical folate deficiency" in THE HORSE and a horse getting folic acid., some healing and some deficiency symptoms. Be well.
 
Last edited:

renski

Senior Member
Messages
338
Location
Honolulu
I think it's a bad idea to take bigger doses of something if it's already making you 100x worse, the answer might be that you just need some other nutrient in place first, or you have something else going on, gut issues etc?
 

Freddd

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

Sometimes it is the DOG IN THE NIGHT. What was the thing about the dog in the night? He didn't bark. Because of my problems including periodic folate deficiency figured ouit over a 7 year period with 25 episodes a year , about 175 episodes, during which I went through a titratrition from 200 mcg to 45 mg per day. Then I used that data including the folic acid and CyCbl period as condition A and effect on MCV. MeCbl didn't change MCV = 99.8. Then with each 2 weeks having the folate deficiency and the multiple titrations I was able to chart the L-methylfolate. With each small,. increment, a symptom or 10 symptoms would improve a little and 190 would worsen. At 4mg it suddenly cut the number of deficiency symptoms worsening and after that the number of worsening symptoms dropped from 200 symptoms to 1 -3 symptoms as amount increased, painfully slowly until I caught on what titration and then the number dropped and the intensity decreased until getting to that last one, MCV. then that went down to 92 until low copper increased MCV to >100. I've spent 35,000+ hours studying this since 1978. When the entire system depends on recognizing the changes. In any case. My experience says that a person will know the difference in hours to a day that it is bringing the symptoms down and each increase of folate increased need for potassium, and then other nutrients and it was always whatever was stopping cell making. Do you have lots of skin lesions of various sorts, cracked skin on finger points, at corners of nails, ancen type lesions, sores at corners of mout, oral lesions etc. The "fire" comes out of them in hours and heals in days. At 71 I have the best skin I've ever had. When I did the N=1000 natural language symptoms study I did a lot of them at nudist clubs. By the end of the interviews, 1000 of them over a couple of years,I could visually identify those who were going to have these deficiencies by their skin. If it doesn't work in 3 days something is wrong., The typical cycle is 3-5 days. Day 1 some things feel better and start healing, by 3rd day symptoms light up and at first it is folate or potassium or both, but you will know in a few days. If you don't there is a different bottle neck that you hypothesize. Doing something that doesn't work for months and months seems pointless to me. The micronutrients are more difficult but I could feel the effect of 2 mg of copper in 4 hours, and that was the slowest I experienced. ANd copper also can start some hard hitting refeeding syndrome.
If one recognizes it as bottlenecks and deficiencies that cause refeeding syndrome.

I worked with all sorts of medical patterns to detect fraud and so on and this is much easier to see than fraud and incompetence. The benefits of that amount taken shows up in hours with methylfolate, the things that get worse over the next 3 days are refeeding syndrome symptoms. And the logic has to go in an ordered fashion or you have almost no chance of spotting all this. People who observe carefully can find out their variations and recognize the patterns in their own body's symptoms.

For instance, I was diagnosed as having congestive heart failure in 1992. mortality by 10 years. I started MeCbl in 2003. I'm 27 years post diagnosis and do not have the symptoms any more. I used to have FMS, CFS, MCS, IBS, CHF, etc and those symptoms are all gone. I lost 85 pounds of tater, 50 pounds of fat, replaced 50 pounds of muscles that had atrophied. I weigh 190 pounds currently, and rebuilding muscle again since my most recent COB[II] startup after 4 years in the hole becasue of trace mineral damage and deficiencies. Good luck. I trust you have effectively gotten rid of almost all your symptoms and so on. I've merely mapped hundreds of symptoms and responses for decades. Until 2003 they just got more and worse. Since MeCbl et al I've recovered. I have some experience, and working hypothesis and have 40 years of analysing things like this in consulting and analysing the group health plans for decades and designed and wrote programs for the group health business. If you would feel better if I hid all this unless you paid me $1000 for a consultation, we can do it that way if you prefer, or you can ignore me. I'm giving away my hard won experience and data. My consulting standard is your money back if not satisfied. As you are paying nothing and I'm giving this away, feel no reason to pay any attention to me.. I have failed to satisfy on 2 software projects, one canceled and one not satisfied by change of management and and an estimated delivery that was not one time was the excuse. If I were consulting for you I would help you map your symptoms and all that. My best advice, find somebody else who has healed from these symptoms and conditions and ask them how they did it. That is all I can tell you, how I healed myself and a few others have healed themselves using this info. It is VERY FUSSY and one mistake in the logic or order and a person won't see it. Be well. Good luck.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
We are individuals, with individual genetic and environmental factors which can make our experiences unique.
I have the 677T MTHFR mutation.
Great. What OTHER genes do you have that affect folate status, methylation, your toxicity level, etc? Though MTHFR may indeed affect your folate level, you have many other genes that affect how it, and it's cofactors are used.

Have you had RBC folate measured? Done comprehensive nutrient or methylation testing? Glutathione levels?

If not, how do you know if you need folate, or anything else for that matter? Is folate where the bottleneck is, or are you missing some micronutrient to fully use it?
I also have a history of 20 years (and counting) with health problems
(fatigue / toxicity / heavy metal toxicity / inflammation / high ammonia problems).
Many of us do. I did, and ended up with stage 3 cancer. Imbalanced methylation can lead to cancer (see the attached, the red dots in the diagtam show which parts of the process can lrad to cancer). It's useful to know what your nutrient status is before getting yourself into worse trouble.
Because of this I have tried on multiple occations to start up Metafolin.

My problem is that if I take a 400mcg tablet, crush it, and take less than 1/10th of the tablet
(what amounts to 20-40mcg) I get such a bad migraine that I have to lie in for 2 days and call in sick for work.

People may think I am exaggerating, but I am not unfortunately.

Very believable. So, great, you start up the folate cycle. Did you get the transsulfuration pathway moving first, with B1 and molybdenum? Bet you didn't... Then, did you have all the ingredients necessary for glutathione production, like glycine, NAC, glutamine, selenium and B6? And Glutathione recycling, like vitamin C? After these, then did you pay attention to the methionine cycle? Did you have ample magnesium, vitamin B6, B2, and possibly potassium and/or methionine? If so, did you take these in this order?

I have had all kinds of weird symproms over the years. It either boils down to your mobilizing some toxin without having all of these cofactors in place to be able to get tgem through the excretion process, so they get reavsorbed and make you miserable, you have the wrong ratios of these nutrients, too much of some and not enough of another, cauzing a bottleneck, with toxins backing up and getting reabsorbed, or some weird genetic thing where an enzyme isn't working properly, which is possible but rare. Your history of toxicity is a big clue...do you have mold toxicity or peroxynitrite production complicating this picture?

Blithely adding a bunch of folate (or even a little) in without attention to these other details is a recipe for disaster. A good functional medicine doctor should be anle to help you with nutrient testing, mycotoxin and toxin testing, microbiome testing (for absorption and metabolism of nutrients) and help you come up with as comprehensive supplement plan.

Failing that, you can slowly walk your way backwards through the transsulfuration pathway, glutathione production and recycling, and the methionine cycle, adding small amounts of nutrients in turn, to get the whole process working.
I have taken potassium, B12 in various forms, and B-complexes in tandem with my attempts and made sure my B12 levels are good before starting the Metafolin - but this does not make a difference.
Did you need them? Which ones? What about the other nutrients you didn't mention?
 

Attachments

  • locasale one carbon cancer.pdf
    1.1 MB · Views: 30

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
My best advice, find somebody else who has healed from these symptoms and conditions and ask them how they did it. That is all I can tell you, how I healed myself and a few others have healed themselves using this info. It is VERY FUSSY and one mistake in the logic or order and a person won't see it.
Good advice @Freddd. It is very individual and unique. It is great to hear what has worked for you, with your extraordinarily unique genetic makeup. But, instructional in that it took decades before you figured out what worked for you. That's a huge amount of time and money to invest in such a project, but worth it, given the alternative.

It is wonderful to now live in an age where genetics and metabolomics/nutrient data are so much more readily available so that these puzzles can be solved so much more quickly with high quality tests. There are also well-trained functional medicine and nutrigenomics specialists, which can shortcut a process. Good thing, too, as many of us have other factors kerping us sick, like infections, autoimmunity, mold toxicity, spinal problems, etc. that need to be looked into and tesolved if we are ever to get better.

Dialing in nutrients is incredibly important. But it allows you to optimize, so one can work on other aspects of this vexing disease.