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Instantaneous effect from Methylfolate/B12?

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
@Freddd
The palpitations or chest flutters, or pounding heart (or combination of all) never comes with muscle cramps or twitches like what I’ve read about with hypokalemia. 6 months ago, when I stopped everything, I had hamstring tightness so bad when I sat in my truck I got pins and needles, and my potassium was 4.5. I don’t believe I’ve induced low potassium yet because isn’t actual cramps the first symptom? The bizarre thing is the palpitations only seem to hit at night.

@GreenMachineX,
I see a false assumption. The spasms are not my first symptom. Gut paralysis may be the first one usually. I have to take a drug with a black box warning of possible permanent side effects to be able to eat. many days. Those muscle symptoms are the most visible usually. Another one that announces itself is palpitations. Another is "deep" (not surface) itching that isn't relieved by anything but potassium.

All of these symptoms could announce hypokalemia. I usually have several.including increased blood pressure, but I don't take my BP half a dozen times a day.

Group 1 – Hypokalemia onset. Often called “detox”. 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, intense sudden dizzy spells correctable potentially in minutes with water with potassium gluconate for instance.

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


Group 2a - Both hypokalemia and l-methylfolate deficiency
IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation

Group 2b – Either or both hypokalemia and l-methylfolate deficiency
Headache, Increased malaise, Fatigue


https://www.quora.com/Has-someone-u...7?__filter__=&__nsrc__=2&__snid3__=3020697146
 

GreenMachineX

Senior Member
Messages
362
@Freddd
Gotcha. Thank you for the explanation. 1 more question regarding folic acid though. I also recently tested a multi that used 120mcg of combined methylcobalamin and cyanocobalamin and 400mcg folic acid, all junk except the tiny amount of methylcobalamin. But here’s the kicker, my muscles loosened up, my angular cheilitis started healing, I slept great, but, I was exhausted all the time, had a really tough time gettin out of bed and short term memory was terrible. Can you explain why half of my symptoms immediately got better but created new ones?

I also tried an extra 400mcg methylfolate this afternoon (probably hit 1mg by that time) and now feel very detached from everything, having a hard time comprehending your posts and talking to people, feel spaced out. Is this the donut hole? Took some but not enough?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
@Freddd
Gotcha. Thank you for the explanation. 1 more question regarding folic acid though. I also recently tested a multi that used 120mcg of combined methylcobalamin and cyanocobalamin and 400mcg folic acid, all junk except the tiny amount of methylcobalamin. But here’s the kicker, my muscles loosened up, my angular cheilitis started healing, I slept great, but, I was exhausted all the time, had a really tough time gettin out of bed and short term memory was terrible. Can you explain why half of my symptoms immediately got better but created new ones?

I also tried an extra 400mcg methylfolate this afternoon (probably hit 1mg by that time) and now feel very detached from everything, having a hard time comprehending your posts and talking to people, feel spaced out. Is this the donut hole? Took some but not enough?


Hi GreenMachineX,

The original list for the N=1000 questionnaire study I did with a single 1000 mcg sublingual MeCbl used for 1 hour during the interview, used all English lists from around the world I could find of B12 symptoms. Then something like "peripheral neuropathies" was given a multitude of all the symptoms of said neuropathies for progressive detail. Then there were all the symptoms people reported in variations, all the distinctions they made or I made (10 or so different neuromuscular pains. Then I kept track of all my symptoms and those of some others that responded to MeCbl and basics.or in studies, just plain MeCbl. I eliminated all the symptoms that didn't respond to the MeCbl and other nutrients, grouped them in order of responses and combinations and this list are all symptoms that responded to MeCbl, MeCbl and Metafolin(methylfolate) and so on. I only have the first two groups here, what we are talking about.

I had about 80-90% of the symptoms listed, 200 in all that responded over the years.

This is a list of symptoms that are mine, and others experience of these nutritional items in relieving their symptoms, and in a very few instances reflect research and successful practice, such as p5p for Hcy and Liver extract studies of several disorders in old journals. In some instances the same symptoms might have different combinations and order of nutrients. There are redundancies. Some people are going to report what the doctors said. Some described it the way they experienced it. The importance was getting a response. People might say "no" to neuropathies of feet and same person say "yes" to burning feet, electrical feeling jolts to feet, severe tingling and so on.

"Can you explain why half of my symptoms immediately got better but created new ones?"


That is easy. I started responding in 5 minutes. Within an hour me, and hundreds of other people from the study, had dozens of symptoms affected in that first hour. I did the study becasue I HAD TO KNOW if my immediate response was normal or unusual. It was normal. 75% of the people with large numbers of at least some of the groups of symptoms responded to MeCbl within one hour, and later in a small redo with MeCbl and Metafolin I had the same results. 80+% responded even more to those two things inside an hour. The small dose of Metafolin, 800 mcg, caused folate deficiency refeeding syndrome in most everybody having both the response symptoms and dozens of blossoming folate deficiency symptoms.


"I also tried an extra 400mcg methylfolate this afternoon (probably hit 1mg by that time) and now feel very detached from everything, having a hard time comprehending your posts and talking to people, feel spaced out. Is this the donut hole? Took some but not enough?"

Yes, some but not enough. Now if you took 4mg 3 or 4 times in a day, you likely wouldn't have most of the refeeding syndrome deficiency symptoms come out. They show up as soon as they are challenged to get past that folate point in the cell making. There is virtually no effective nutrient that I have taken that hasn't shown up in 5 minutes (MeCbl) to 4 hours (copper). On the 3rd day of continuation you would get potassium refeeding symptoms. I was prepared for the potassium from studies. Not ONE of the studies mentioned refeeeding symptoms. They had no idea. I titrated slowly,suffered extremely and eventually solved it. Instead they listed those things as side effects. However, since Metafolin wasn't tested with MeCbl, the studies had very little cell building done.

The "lights came on" for me in 20 minutes. Depression of decades cleared. I walked all the way up the stairs without stopping after one hour.for the first time in years.I had energy I had never had before, but no muscle capacity. I didn't notice much in refeeding symptoms as I already had all of them. On this list the 7 years it took for some of the folate symptoms was becasue I didn't take enough until 7 years. I got rid of my last folate deficiency high MCV after 13 years becasue that is when the dose got up to the necessary 45mg. On the meCbl the 9 months was how long it took me to titrate to equilibrium at 10mg sublingually daily, about 2.5 mg absorbed according to my urine colorimetry tests.

I hope this answers your questions, if not, ask.


Extracted from https://www.quora.com/Has-someone-u...7?__filter__=&__nsrc__=2&__snid3__=3020697146

These symptoms responded almost entirely or entirely with basics 5 star MeCbl – methylcobalamin – Methylb12 - Mb12 - Mecobl . Many started improving in hours. Others took 9 months to correct.

morning joint stiffness and pain
paleness
acid reflux
nausea
daily vomiting
standing with eyes closed, lose balance
hands feel gloved with loss of sensitivity - glove anesthesia
feet feel socked by loss of sensitivity - stocking anesthesia
glove and stocking anesthesia
neuropathic bladder
unable to release bladder, mild to severe
unable to fully empty the bladder
fecal incontinence - occasionally to frequently
diminished hearing - gradual onset or present for life, sudden return possible
tinnitus - ringing in ears
always feeling cold
intolerance to loud sounds
intolerance to multiple sounds
sleep disorders
non restorative sleep
Night terrors
Prolonged hypnagogic or hypnopompic states transitioning to/from sleep
Sleep paralysis
alteration of touch all over body, normal touch can be unpleasant and painful
alterations and loss of taste
taste hallucinations
smell hallucinations
sound hallucinations
visual hallucinations
alterations and loss of smell
loss of smell and taste of strawberries specifically
loss or alteration of smell and taste of potato chips specifically
roughening and increased raspiness of voice, mb12 can smooth it in mid word
blurring of vision - can be sudden onset and sudden return
Visual impairment can be seen; ophthalmological exam may show bilateral visual loss
optic atrophy
centrocecal scotomata
hypersensitivity/intolerance to bright light
intolerance to loud sounds
intolerance to multiple sounds
burning muscle pain
diminished hearing - gradual onset or present for life, sudden return possible
tinnitus - ringing in ears
sore burning tongue


These symptoms responded strongly first to 5 star MeCbl and then Metafolin with basics. Many started improving in hours. Some took 7 years to correct.

Bursitis
stomach not emptying
frequent vomiting
acid regurgitation
dyspepsia
flatulence
altered bowel habits
abdominal pain
loss of appetite for meat, fish, eggs, dairy, the only b12 containing foods
nutrient specific anorexia
intermittent constipation
intermittent diarrhea
irritable bowel syndrome
sores, ulcers and lesions along entire GI tract or any part
anorexia
Bulimia
Hypersensitivity to touch
Hypersensitivity to odors
Hypersensitivity to tastes
Hypersensitivity to clothing texture
Hypersensitivity to body malfunctions, symptoms
Hypersensitivity to sounds and noises
Hypersensitivity to light and visual stimuli
Hypersensitivity to blood sugar changes
Hypersensitivity to internal metabolic changes
Hypersensitivity to temperature changes
burning bladder (no UTI)
painful urgency (no UTI)
burning urethra (no UTI)
Low blood serum level - below 550pg/ml, Japanese Standard
elevated MCH (Mean Corpuscular Hemoglobin)
elevated LDH
big fat red cells (when said this way usually with happy or healthy modifying it completely misinterpreting results of MCV
platelet dysfunction, low count
white cell changes, low count
hyper segmented neutrophils
headaches
inflamed epithelial tissues - mucous membranes, skin, GI, vaginal, lungs
inflamed endothelial tissues - lining of veins and arteries
mucous becomes thick, jellied and sticky
asthma
chronic cough that mimics asthma but isn't
chronic sinus congestion
dermatitis herpetiformis, chronic intensely burning itching rash
frequent infected follicles or acne type lesions all over body
chronic infections, many varieties possible
Seborrhic dermatitis
dandruff
eczema
dermatitis
skin on face, hands, feet, turns brown or yellow if anemia occurs
poor hair condition
thin nails
transverse ridges on nails, can happen as healing starts
mouth sensitive to hot and cold
sore burning tongue
beef-red tongue, possibly smoother than normal
sore mouth, no infection or apparant reason
teeth sensitive to hot and cold
canker sores
 
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GreenMachineX

Senior Member
Messages
362
@Freddd
Thanks again. I think I get it. I’m coming out of that fog/detached feeling finally. Going by the half life of methylfolate, it makes sense it was that. I’m not sure I’m going to continue any more this week as on Saturday I will be somewhere for most of the day without ANY access to supplements or anything. Do you have any suggestions for this? Should I skip everything except food that day maybe?

Also, is the hypokalemia associated with what we’re dealing with potentially fatal, or just extremely uncomfortable? And, how quickly could it be fatal, if so? In other words, if I induce hypokalemia and do not recognize it as such, how long do I have?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
In 15 years of this I have read a post by one person who who has ended up in the ER doing this. We didn't have methylfolate until several years in and I continued to have all the folate deficiency symptoms i had for more than a decade and as long a 4 decades.It is rough to start and stop healing. I've tried to make a point of people knowing about this. Here is the thing. The potassium also has a short serum half life. The need for potassium lags 3 days generally. Perhaps it takes 3 days to slow down after not taking methylfolate. I don't know. However, the first time I experienced the really nasty leg spasms it took me 45 minutes to make it into the kitchen to take a 300 mg dose of potassium. My potassium is much closer now. The people dying quickly from refeeding are the ones that have had real starvation and everything is truly deficient and damaged.

It gets truly unpleasant and nasty, feeling really really sick, with the symptoms listed, more and more of them.. All systems are near failure in that. When it gets down to the spasm level it can also paralyze the gut. Why can't you have your baggie of vitamins and a water bottle and pack a lunch to take most of them with? Here is the thing. Some people have less stable potassium than others and people with CblC have unstable electrolytes as a pretty standard thing, so they say in research. My experience would verify that.
 

Aerose91

Senior Member
Messages
1,401
@Aerose91,

Can you tell me all about your responses of all kinds to MeCbl with as much detail as you can.? Combining that with the symptoms will tell al lot.
My symptoms are in irder of severity:

-Severe 24/7 depersonalization/derealization
-walking a tightrope of psychosis, a small mistake will put me into it
-inability to feel time, time passage or where I'm placed in the world
-complete lack of emotions or feelings. It's just this unending "nothingness"
-Light sensitivity and occasional sound sensitivity
-Hallucinations, visual and auditory
-Exercise intolerance (over exertion only effects my brain)
-Short term memory loss
-Occasional bouts of rage
-Muscle weakness

There is much more but i can't remember it all

When i take mb12 the first things to hit are increased light sensitivity and a manic/ocd feeling. I'll become obsessive with thoughts to the point of it being intrusive 24/7. The dissociation will increase. Sleep will diminish because my mind is going manic and my breathing has become quick and shallow. Short term memory loss will increase. My pupils dilate and if i continue taking it these will all increase. This is when i usually can't take it anymore and back off the mb12.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
My symptoms are in irder of severity:

-Severe 24/7 depersonalization/derealization
-walking a tightrope of psychosis, a small mistake will put me into it
-inability to feel time, time passage or where I'm placed in the world
-complete lack of emotions or feelings. It's just this unending "nothingness"
-Light sensitivity and occasional sound sensitivity
-Hallucinations, visual and auditory
-Exercise intolerance (over exertion only effects my brain)
-Short term memory loss
-Occasional bouts of rage
-Muscle weakness

There is much more but i can't remember it all

When i take mb12 the first things to hit are increased light sensitivity and a manic/ocd feeling. I'll become obsessive with thoughts to the point of it being intrusive 24/7. The dissociation will increase. Sleep will diminish because my mind is going manic and my breathing has become quick and shallow. Short term memory loss will increase. My pupils dilate and if i continue taking it these will all increase. This is when i usually can't take it anymore and back off the mb12.

Hi Aerose91,

You have seen the long list by nutrient responses? I had a bunch of the symptoms you demonstrate and have seen them in others. I had olfactory hallucinations and extreme sensitivity and similar many changes in taste. In your list I see a mix of (usually) functional metabolic changes, (usually) demyelination and sometimes copper deficiency or combinations of more than 1 cause.

Can you start all the basics like A, E, D, C, b-complex without folate of B12, main mineral, trace minerals and basic fats (fish oil, lecithin.) without a lot of problem?

Then we can work out a way to titrate the deadlock quartet without too much unpleasantness I think.
 

Aerose91

Senior Member
Messages
1,401
Hi Aerose91,

You have seen the long list by nutrient responses? I had a bunch of the symptoms you demonstrate and have seen them in others. I had olfactory hallucinations and extreme sensitivity and similar many changes in taste. In your list I see a mix of (usually) functional metabolic changes, (usually) demyelination and sometimes copper deficiency or combinations of more than 1 cause.

Can you start all the basics like A, E, D, C, b-complex without folate of B12, main mineral, trace minerals and basic fats (fish oil, lecithin.) without a lot of problem?

Then we can work out a way to titrate the deadlock quartet without too much unpleasantness I think.
I've taken all those supplements you listed for years. 7 years now. In fact I've taken every supplement under the sun. I also take zinc with copper. In terms if methylation, i do fine with SAM-E and carnitine. I can take 800 mg SAM-E with no issues and 1200 mg carnitine with maybe only a little hyperactivity. Hydroxy b12 is no issue for me (i feel nothing from it) and have taken methylfolate with no issues either. Mb12 is the only problematic one
 

GreenMachineX

Senior Member
Messages
362
@Freddd
I’m still working out this b12/folate thing and having trouble. I’m seeing all of these people taking milligrams of b12 in various forms and only tolerating 400-800mcg methylfolate and up. I know you suggested I was in paradoxical folate deficiency but taking extra doses of folate results in a histamine flush that lasts a couple hours.

Granted, I could’ve caused an issue taking the wrong probiotics for a week last week (after some research, several histamine raising strains). But, it does seem like I need more folate to b12, and if I’m tracking correctly, I’ll be at 800 mcg methylfolate to 125mcg methylcobalamin! Now, when I was taking 150mcg methylcobalamin almost 2 years ago, that had my serum b12 level at 1019 pg/mL with range 200-1100 pg/mL. Could I just be the one person around here that needs so much more methylfolate to methylcobalamin???

Edit: Also, my blood pressure is the lowest it’s ever been with this current protocol of 125mcg methylcobalamin, 400mcg methylfolate, and extra b2 (25mg) on top of what I’m getting in my very low dose multi, but the angular cheilitis flares and reduces every day.
 
Last edited:

Aerose91

Senior Member
Messages
1,401
@Freddd
I’m still working out this b12/folate thing and having trouble. I’m seeing all of these people taking milligrams of b12 in various forms and only tolerating 400-800mcg methylfolate and up. I know you suggested I was in paradoxical folate deficiency but taking extra doses of folate results in a histamine flush that lasts a couple hours.

Granted, I could’ve caused an issue taking the wrong probiotics for a week last week (after some research, several histamine raising strains). But, it does seem like I need more folate to b12, and if I’m tracking correctly, I’ll be at 800 mcg methylfolate to 125mcg methylcobalamin! Now, when I was taking 150mcg methylcobalamin almost 2 years ago, that had my serum b12 level at 1019 pg/mL with range 200-1100 pg/mL. Could I just be the one person around here that needs so much more methylfolate to methylcobalamin???

Edit: Also, my blood pressure is the lowest it’s ever been with this current protocol of 125mcg methylcobalamin, 400mcg methylfolate, and extra b2 (25mg) on top of what I’m getting in my very low dose multi, but the angular cheilitis flares and reduces every day.
This touches on a point that i have wondered myself. For those of us who have normal to high serum b12 and normal to low MMA, but have the MTHFR homozygous mutation, does that mean that our bodies make enough b12 but not enough folate to correspond with it?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
@Freddd
I’m still working out this b12/folate thing and having trouble. I’m seeing all of these people taking milligrams of b12 in various forms and only tolerating 400-800mcg methylfolate and up. I know you suggested I was in paradoxical folate deficiency but taking extra doses of folate results in a histamine flush that lasts a couple hours.

Granted, I could’ve caused an issue taking the wrong probiotics for a week last week (after some research, several histamine raising strains). But, it does seem like I need more folate to b12, and if I’m tracking correctly, I’ll be at 800 mcg methylfolate to 125mcg methylcobalamin! Now, when I was taking 150mcg methylcobalamin almost 2 years ago, that had my serum b12 level at 1019 pg/mL with range 200-1100 pg/mL. Could I just be the one person around here that needs so much more methylfolate to methylcobalamin???

Edit: Also, my blood pressure is the lowest it’s ever been with this current protocol of 125mcg methylcobalamin, 400mcg methylfolate, and extra b2 (25mg) on top of what I’m getting in my very low dose multi, but the angular cheilitis flares and reduces every day.

@GreenMachineX,

I spent decades designing and producing HMO and Insurance software, auditing, the plan and doing our job of looking out for the members of the plan. We worked for the trustees. A few people each year would have their files-charts reviewed with the person We found high error rates in most all parts of records. We learned to work with the data as a surrogate for the symptoms. In trying to heal this mystery disease, going after it by theory, works poorly at best and no way you know often for months, and then who knows what you have.

By working with the symptoms from the point of view cell making (the heart of healing) we can get critical results in hours and first days of each change. So, I'll tell you how I use my symptoms. I started out with 200+ symptoms. Trying to work with that was confusing. So with angular cheilitis, it changed frequently; more "burn, less burn, healing in the days after the burn stops, lesion forming in 24 hours as burn starts. Burn on is worsening, burn off is healing, completely making each cell to completion. I had these from childhood and I have scars upon scars upon scars at the corners of my mouth.

Ratio of MeCbl to L-methylfolate is kind of a false precision. It doesn't mean anything and has no effect. More MeCbl does't drive anything. Having enough MeCbl WHERE you need it when it is needed allows the MeCbl to do it's function. So for instance, it has been found that people with FMS, CFS, ME, Parkinson's, MS, other similar diseases, have a low MeCbl (High Hcy in cerebrospinal fluid), low AdoCbl (elevated MMA in CSF) or both. It can be difficult getting it into CSF and/or to quick to dump it. In a Japaneses study of 2.5mg CSF injections. Improvements lasted as ling as the CSF MeCbl level stayed high. In the people studied, diabetics with neurological problems, some were drained of MeCbl in the CSF in less than 3 months and other people lasted more than 4 years on the last review I read. So 125 mcg of MeCbl absorbed (1000 mcg sublingual held under tongue or lip for 60 minutes or more.) might be fine for all healing in body, except that the serum half life drops to 20 minutes or so with 125mcg which bumps you to 25,000 pg/ml, down down to perhaps 3,000 pg/ml and from there slows down. People with low CSF MeCbl and/or AdoCbl will have a second startup threshold for one or both kinds typically between > 6mg and < 7.5mg for the cord and brain.

My experience is that 800 mcg of methylfolate will relieve a handful of symptoms a little and cause severe worsening of perhaps up to 100 induced deficiency symptoms. It can be called paradoxical folate deficiency or some compartments can heal while other compartments have deficiency symptoms. Call it what you like. You need more methylfolate, If you were to try 4mg of methylfolate 4 times a day, you my not have any worsened folate deficiency symptoms, just all improved with some of them vanishing in days. That upper "limit" in B12 serum levels is ridiculous as it makes people stop before they get into real healing territory. In MeCbl studies qualifying people by symptoms, 2/3 of the people improving would not have been accepted by test rests, including people with over 1500 mcg. One mcg increases serum level by 200pg/ml. I take 30mg/day, my serum averages > 220,000 pg/ml and much of my neurology healed. The body does the most healing at about 3+ mg being absorbed, from 15mg or MeCbl sublingual or 3mg MeCbl injection. (subcutaneous is time release, level serum for 8 hours). I wouldn't be upset about having more than 7.5 mcg in circulation. Healing is usually getting better at 20x as much being. However, without more methylfolate you are already topping out as much as your body can heal. So titrate to 5000 mcg sublingual daily for a while and increase methylfolate as I mentioned and you will be forming cells at large rates and need plenty of potassium as those will likely be the next set of symptoms.

Our bodies do NOT MAKE MeCbl, AdoCbl or L-methylfolate (except converting a tiny amount from folic acid and veggies, not everybody can).
 

GreenMachineX

Senior Member
Messages
362
@Freddd
Thanks. The thing I’m not getting is, the higher I go with MeCbl, the worse the folate deficiency symptoms get. I’m at 500mcg of metafolin so far today and only 125mcg methylcobalamin this morning, and all my deficiency symptoms are improving. Am I an anomaly?
 

sb4

Senior Member
Messages
1,659
Location
United Kingdom
For the person having tingling feet when upping folate/b12 could you perhaps be inducing a thiamine deficiency, or another B-Vit? I have a suspicion that is what I did 2 years ago when I got drastically worse.

I was messing around with high doses of methylfolate, b12 and some other related supplements when I sent my POTS spiraling down to a level I have yet to recover from. I have since found that B1 helps my POTS and other patients have found this also.

@Freddd You mention reading studies involving Liver Extract. I have read bits of some similar studies and they mentioned that crystaline B vitamins alone had little effect but eating liver + B vitamins had a great effect on symptoms. Makes me think B complex + Liver might have stopped my disaster with B9/B12.

I am going to start messing around with folate and b12(oil this time) again soon. This time I am going to be more careful at not trying to induce other deficiencies.

@Freddd I noticed you mentioned Mean Cell Haemogoblin Concentration earlier. With it being high meaning B12 deficiency. I have gone other some old test results and found 2 blood tests taken 2 years apart early on in my illness. Both had LOW MCHC. I have read that this could also be B9/12 but also iron/B6. Any thoughts on this? Thanks.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
@Freddd
Thanks. The thing I’m not getting is, the higher I go with MeCbl, the worse the folate deficiency symptoms get. I’m at 500mcg of metafolin so far today and only 125mcg methylcobalamin this morning, and all my deficiency symptoms are improving. Am I an anomaly?

@GreenMachineX,

"the higher I go with MeCbl, the worse the folate deficiency symptoms get. "
YES! exactly. So then take more MeCbl and more methylfolate. You can heal all those B12/folate deficiencies in a year or you can keep them damaging you for the rest of your life, your choice if I am right. My internist said "I've never seen anybody come back from so far over the line" (towards death). It is able to start more cells which then fails for lack of enough methylfolate. Each cell that fails becomes a lesion somewhere, from IBS to acne type lesions, to infected follicles to cracks on the fingers by the nails and Angular cheilitis, and many more. That is what happens. Right now you are starving 90% of the cells that need it of MeCbl , they don't start healing and therefore don't have a whole lot of activated deficiency symptoms complaining "FEED ME SEYMOUR" (more methylfolate, which then requires more potassium. That is the whole point. When you stop starving your body ("teasing" it with only a taste) of MeCbl it will tell you what it needs and that is more methylfolate, which then tells you more potassium and then more folate and then more potassium until it is at equilibrium. Then there is often something else and likely all trace minerals once you get through the major items. The low trace minerals do lots of damage when short, very serious damage which you want to prevent my correcting How many decades do you want to spread out your healing over while doing more damage as long as the partial starvation continues. I wanted to be able to have a life again before dying of deficiency disease in not as old as I would prefer body. I was 90% healed in 5 years, all the damage I'm working on now was caused by copper deficiency. Many of the same symptoms present as MeCbl/mfolate deficiency symptoms until; you are no longer short of mfolate. Also, don't forget AdoCbl 10mg sublingual for 1-2 hours once a week. Then with the AdoCbl you will want to add TMG. This will increase the methylation done with AdoCbl into the mitochondria and work on things from another angle and complete the healing cells more likely. The object isn't to dodge the induced deficiencies, it is to supply enough tso there isn't those induced deficiencies. You can't heal all those things that complain without activating them. You can't heal without starting healing.

Titrating MeCbl as you are doing stretches out the misery for the rest of your life most likely. treading water. One needs to heal faster than routine maintenance allows if you are going to win this "you bet your life". Many people have called this anti-intuitive except that it is a winning strategy. The epithelial tissues are affected rapidly and heal rapidly becasue those cells are being constantly replaced. If you never get passed those you can't heal many very important things. Be in good health.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
For the person having tingling feet when upping folate/b12 could you perhaps be inducing a thiamine deficiency, or another B-Vit? I have a suspicion that is what I did 2 years ago when I got drastically worse.

I was messing around with high doses of methylfolate, b12 and some other related supplements when I sent my POTS spiraling down to a level I have yet to recover from. I have since found that B1 helps my POTS and other patients have found this also.

@Freddd You mention reading studies involving Liver Extract. I have read bits of some similar studies and they mentioned that crystaline B vitamins alone had little effect but eating liver + B vitamins had a great effect on symptoms. Makes me think B complex + Liver might have stopped my disaster with B9/B12.

I am going to start messing around with folate and b12(oil this time) again soon. This time I am going to be more careful at not trying to induce other deficiencies.

@Freddd I noticed you mentioned Mean Cell Haemogoblin Concentration earlier. With it being high meaning B12 deficiency. I have gone other some old test results and found 2 blood tests taken 2 years apart early on in my illness. Both had LOW MCHC. I have read that this could also be B9/12 but also iron/B6. Any thoughts on this? Thanks.

"For the person having tingling feet when upping folate/b12 could you perhaps be inducing a thiamine deficiency, or another B-Vit? I have a suspicion that is what I did 2 years ago when I got drastically worse."

It is quite possible. That is why a person needs to be taking b-complex without folic acid and CyCbl, magnesium, calcium, multi trace minerals, A, D, E, C and some other basics, omega 3 oils and lecithin. Without having the vast majority of things sufficient it would be near impossible to recognize the deficiencies.It would be like shooting a T-rex with a BB gun.

The liver extract concentrate studies were done in the 30s and 40s and defined "protein mystery factor". They were 100% non-replicated with CyCbl demonstrating that CyCbl is NOT protein mystery factor. However,MeCbl,AdoCbl, l-methylfolate, l-carnitine and trace minerals does equal and exceed protein mystery factor.

There is a way to do it. First start everything but the deadlock quartet. Then start with 1mg sublingual MeCbl to be able to absorb 150-250mcg in 45-120 minutes, time proportionate. Titrate to 5mg, of MeCbl for 2 hours to get 1000mcg absorbed which for a hour or so will penetrate further into tissues. Then if you start methylfolate, you could bypass the massive deficiency display by starting with 4mg methylfolate 3 or 4 times a day. You might escape with going straight to potassium from there and not have any massive display of folate deficiency. With the b-complex already being taken chances are you are not going to go deficient on the b-vits. Thiamin can increase the need for potassium heavily without any evidence of more healing. However, if the question comes up, increase the B1 to 50 mg or something like that. Everything works better with the deadlock quartet than without it. This is all the pragmatic results of doing 15 years of healing with these things and a systems analyst.

"I noticed you mentioned Mean Cell Haemogoblin Concentration earlier. With it being high meaning B12 deficiency. I have gone other some old test results and found 2 blood tests taken 2 years apart early on in my illness. Both had LOW MCHC. I have read that this could also be B9/12 but also iron/B6. Any thoughts on this? Thanks."

Doctors called me names like "secret alcoholic, blood doesn't lie". My blood tests had nearly everything screwed up. They demonstrated multiple nutrient deficiencies. The all normalized as I corrected the deficiency symptoms that anouce themselves as one uses all the nutrients in the way described. However, I tried to keep the announced deficiencies, once I knew that was happening, to 2 days of correction before the next one would pop up. Each cycle can be about 5 days long. If you stretch it out to 20 days it can do damage.I had terrible damage from 5 years of unrecognized copper deficiency. When you are having ONE deficiency at a time, that's what the symptoms tell you very straightforwardly. When you have 20 or 30 deficiencies at once who knows? Nobody has that figured out.
 

GreenMachineX

Senior Member
Messages
362
@Freddd
I think I understand. Last 2 Questions for now:
Would these deficiencies show up on a normal folate or b12 blood test or a Spectracell blood test?

Lastly, what do you suggest for the excessive neurotransmitter production and ensuing insomnia the higher doses of b12 cause?
 
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Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
@Freddd
I think I understand. Last 2 Questions for now:
Would these deficiencies show up on a normal folate or b12 blood test or a Spectracell blood test?

Lastly, what do you suggest for the excessive neurotransmitter production and ensuing insomnia the higher doses of b12 cause?
@GreenMachineX,
I would suggest you change your hypotheses. Your present ones steer you away from healing. So what happens when when a person is low on MeCbl-, AdoCbl and l-methylfolate? I can tell you what happened to me. By 39 my testosterone fell below the low range for somebody 80 years old. I had polyneuropathy, subacute combined degeneration, depressed, terrible brain fog and so on, very deficient in ALL the 600 biochemical responses that can come to a halt without the cobalamins and methylfolate including neurotransmitters.

Our bodies notice differences. After wearing uncomfortable clothing for a month most people never notice the tags that annoy others tremendously. Increasing or decreasing salt and sugar changes ones sensitivity to them. Use more salt and in a while it doesn't seem as salty, same with sugar. If you have 1 tsb in a cup of tea, 50% of people would notice 1/3 of a tsb added to that, 1/3 of a doubling. So lets say you have 10 tsb sweetening a drink. Then if you add the same 1/3 TSB you and everybody else will be unable to taste the difference, 1/10 of a doubling. However, if you add 3 1/3 tsb to it, 50% of people will be able to taste that difference, 1/3 of a doubling.


So, using an arbitrary example, when I started the MeCbl sublingually I noticed it in 5 minutes and it has a huge seeming effect in 10 minutes. Based on later trials and urine colorimetry these tablets were absorbed at approximately 24% (240mcg) of nominal dose in a 120 minutes. That amounts to about 2 mcg per minute. So in 5 minutes my serum level could go up by 1000 pg/ml (10mcg) and it was very noticeable. However, that amount in the serum is being cut in half each 20 minutes when the dose is first taken.

Now I inject 10mg of MeCbl 3 times a day. If I miss a dose my nerves feel noticeably worse. With it I feel nothing change as it is at equilibrium.

So in the early days ones sensitivity is turned way up since what it is feeling is almost gone. SO if you have 1% of normal available and the first dose raises you to 10%, that is a 10x increase in MeCbl activity, a HUGE increase of hundreds of reactions increasing and many are missing the cells to actually make whatever they make before the healing can get started. Aftersome of you missing capacity isd filled in, maybe you are at 10%. Then you double that and that is a little more than slightly noticeable. When you get uo to 50%, and have the same increase, 10%, you like won't even notice it. If a person is at 75% and increases to 100%, half of the people won't even be able to notice it.

What you are feeling are the artifacts of some things starting and some things will take months or a year to heal and proidce the right things. Let us say it is a journey of 100,000 steps. Each step you take you feel changes but it isn't All correct until the 100,000th step.

If you increase MeCbl faster it will be slightly more intense. I did an n=1000 symptoms history study for developing a questionnaire with a single sublingual tablet. Some people did 1000 mcg and some did 5000 mcg, same brand, same absorption percentage via colorimetry in other tests. NOBODY at all could tell the difference between 1mg and 5 mg. For that matter a 1mg injection made no difference compared to a sublingual tablet, a 10mg injection made no noticeable difference from 1 mg except for a single response at 7.5 mg for a CNS threshold.. Then injections up to 100mg made no difference.

So what is happening is your body is starting to restore your body to normal biochemistry and nothing is in balance to start with and some things go dangerously low like potassium and that makes one feel very sick often. B12 deficiency makes for any of several sleep disorders. It took me 9 months of neurological healing for normal sleep to be restored and methylfolate to restore normal dreaming.

None of the tests will tell you anything useful. If you try to MAKE each number be mid-range, you are taking on an impossible task. It won't heal you. And anyway, the numbers rarely mean what you think they mean. Having Methyltrap can cause a high folate level because it isn't being used,not becasue you are taking too much.They don't even know how much is enough to heal a body. The body has to have enough to cause healing in excess of ordinary maintenance which likely isn't the amount of a failing body has on hand. That is how each of us got into such deplorable ill place, not enough of things to heal or even maintain health. And these numbers can't tell you what is sufficient for healing. The people with the tests or the tests themselves can't tell you how to do this. At least I have actually healed myself and am not blinded by not working hypotheses. Like in Watergate, "Follow the money". With These nutrients, follow the "startup" feel, that is the feeling of healing, of forming new cells and for me they continued for 5 years until I got clobbered by copper deficiency.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
@Freddd
I understand. But isn’t there something to take to help sleep in the mean time? I literally become ill without enough sleep.

@GreenMachineX ,
Maybe. TMG can often help take the edge off. ANd one of the things I found was that if I took a MeCbl 1mg and added 1 tablet each hour, it isn't any worse for sleep and it reaches equilibrium much quicker and in a few days a 1q mg feels normal again. Also, for some people AdoCbl also helps take the edge off and helps sleep.