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Need large amounts of Mfolate throughout day AND potassium--but potassium opposes MF--help?!

Messages
52
I've been on Freddd's protocol for about 2 months.

1) I've finally realized that I need Deplin level amounts of methyfolate (right now I'm at 10mg, but will probably have to go higher, possibly much higher).

2) I've also finally realized that I need to supplement with a LOT of potassium (1,000 to 2,000.

3) Well, I've read on these boards that potassium will block methyfolate.

4) Freddd also says that it's important to keep a stream of Methyfolate going, dosing throughout the day, rather than a big dose.

So, logistically how can I get both of these things into my body throughout the day?!!

So frustrated!!!!
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I've been on Freddd's protocol for about 2 months.

1) I've finally realized that I need Deplin level amounts of methyfolate (right now I'm at 10mg, but will probably have to go higher, possibly much higher).

2) I've also finally realized that I need to supplement with a LOT of potassium (1,000 to 2,000.

3) Well, I've read on these boards that potassium will block methyfolate.

4) Freddd also says that it's important to keep a stream of Methyfolate going, dosing throughout the day, rather than a big dose.

So, logistically how can I get both of these things into my body throughout the day?!!

So frustrated!!!!

Hi Soporificat,

I know what you. The timing can be difficult. I take 4000mcg of Metafolin with my pre-meal supplements and meds; SAM-e, LCF, Levothyroxine, DHEA, Pregnenolone. An hour later I take 400mg of potassium. Then just before a meal I might have a couple of more folate tablets and then 30 minutes later take 5 or 6 potassium with the meal. I take b-complex with food. I also take 300mg of potassium at bedtime. However, with the folate unwound to needing 4mg to stop the cheilitis, I can now see if 6 or 8mg helps something even more. If the doses are 30-60 minutes apart or 2 hour after food, they don't interfere particularly. I take the folate and then 30 minutes later potassium. I take the folate before food and the potassium with the food. It takes some practice. What I think is desirable is to have healing going, even if not perfect and then you get clues, more or less of folate or potassium needed. Follow the clues. Take small steps in titrating up to home in on a dose from below.

Considering that B1, B2 and B3 can cause changes in how much potassium and Metafolin might be used daily, it might pay to check the labels and find out how much you are getting. I found that a B-50 type supplement was too much in the b1 b2 b3 combo. Taking 100mg extras was too much. I found a b-complex with only 20mg of b1 and similar on the others and take it twice a day. It has slowed down the rate of potassium and folate need.

However, keep in mind that that amount of potassium and folate being used is in the range of that of people having effective healing. Stopping the potassium need stops the healing. HyCbl can affect about up to 30% of the symptoms for up to 70% of people. Nobody actually heals on it as the majority of b12 deficiency symptoms will keep worsening even while a few symptoms may improve. HyCbl is great for having the illusion of doing something and will keep most people safe from the discomforts of healing. Unfortunately they will generally continue to have worsening symptoms more narrowly defined. Good health to you. Follow the clues. If you keep it up for a year most of the symptoms being affected now will be largely gone and a different set will be healing.
 
Messages
52
Hi Soporificat,

If the doses are 30-60 minutes apart or 2 hour after food, they don't interfere particularly. I take the folate and then 30 minutes later potassium. I take the folate before food and the potassium with the food.

Thank you, Freddd! This I can do! It's great to know the parameters.


I found a b-complex with only 20mg of b1 and similar on the others and take it twice a day. It has slowed down the rate of potassium and folate need.
That's helpful to know. I'm taking "B-Right" and I checked that it has 25mg of b1, etc... So, I'm good with that. I take that 2x a day.

However, keep in mind that that amount of potassium and folate being used is in the range of that of people having effective healing. Stopping the potassium need stops the healing. HyCbl can affect about up to 30% of the symptoms for up to 70% of people. Nobody actually heals on it as the majority of b12 deficiency symptoms will keep worsening even while a few symptoms may improve. HyCbl is great for having the illusion of doing something and will keep most people safe from the discomforts of healing. Unfortunately they will generally continue to have worsening symptoms more narrowly defined. Good health to you. Follow the clues. If you keep it up for a year most of the symptoms being affected now will be largely gone and a different set will be healing.

Yes, I'm taking methylcobalamin, not HyCbl. 2mg a day for right now, and 2mg of adb12. I'm not sure how much I should titrate up once I get the potassium problem I'm having fixed. So far, I have the impression that I need a ratio of 4:1 of methylfolate to methycobalamin and adb12. So, what I was doing was 8mg methylfolate to 2 mg methcobalamin and 2mg adb12. But, I'm truly not sure about this. Is is possible for someone to need a large amount of methylfolate but not need large doses of the b12s? Oh, I should mention that I've have ME/CFS for 18 years, so I'm not doing the methylation protocol just for "general heath." I have a LOT of healing to do.

I appreciate the encouragement and advice, Freddd!
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thank you, Freddd! This I can do! It's great to know the parameters.



That's helpful to know. I'm taking "B-Right" and I checked that it has 25mg of b1, etc... So, I'm good with that. I take that 2x a day.



Yes, I'm taking methylcobalamin, not HyCbl. 2mg a day for right now, and 2mg of adb12. I'm not sure how much I should titrate up once I get the potassium problem I'm having fixed. So far, I have the impression that I need a ratio of 4:1 of methylfolate to methycobalamin and adb12. So, what I was doing was 8mg methylfolate to 2 mg methcobalamin and 2mg adb12. But, I'm truly not sure about this. Is is possible for someone to need a large amount of methylfolate but not need large doses of the b12s? Oh, I should mention that I've have ME/CFS for 18 years, so I'm not doing the methylation protocol just for "general heath." I have a LOT of healing to do.

I appreciate the encouragement and advice, Freddd!

Hi Soporificat,

I thought I was a lifer until this. B-Right was my preferred b-complex for a long time until I found out what the folic acid was doing to me symptoms wise and loss of b12. Have you identified your early onset folate insufficiency symptoms? I don't use or suggest any specific fixed ratios. For instance I suggest l-Methylfolate be increased until one doesn't have periodic bouts or continuous folate insufficiency symptoms. For me these a certain type of muscle pain, angular cheilitis, acne on my face, IBS and so on.

100mcg absorbed AdoCbl/MeCbl is all that is needed to start the need for even 30mg of Metafolin. These items are not tied together in any ratio. It is more the B1, B2 and B3 and maybe other things that drive the relative needs for methylfolate and potassium. Also, the amount of l-methylfolate a person needs also depends on how well their body handles folic acid, folinic acid and veggie folates.
 
Messages
15,786
Folate (from folic acid and QUATREFOLIC (6S)-5-methyltetrahydrofolic acid glucosamine salt)
Ugh, you're right, they are using both. And they don't specify amounts, so it's probably 99% of the cheap stuff and 1% of the methylfolate.
 

Freddd

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

When I first heard that I said YIPPEE and went to buy my otherwise favorite b-complex. Alas it was not to be. When I examine people's vitamin collections I take a large magnifying glass and reading glasses so I can read everything. You would be surprised how many people have hidden vitamins or nutrients in many formulas. Sometimes I've found them taking dangerous amounts of things that are meant to be taken by the mcg because of multi-formula buildup.
 
Messages
52
I thought I was a lifer until this. B-Right was my preferred b-complex for a long time until I found out what the folic acid was doing to me symptoms wise and loss of b12.

Son of a b&&*&%^%$!!!! I thought B-Right was all methylfolate (this error due to my CFS brain). Welp, I definitely shouldn't have folic acid. Which b-multi do you use? Also, do you use a general multi, and if so, which one?

Have you identified your early onset folate insufficiency symptoms?

Yes, I think so. In general, I have migraines when I test the boundaries of my ME/CFS, and otherwise I don't. However, I also get onset of migraines without enough folate, and it quickly subsides if I add more folate.

What I think are the hypo-kalemia symptoms for me are twitches on my face, and a big increase in fatigue and dizziness.

I don't use or suggest any specific fixed ratios. For instance I suggest l-Methylfolate be increased until one doesn't have periodic bouts or continuous folate insufficiency symptoms. For me these a certain type of muscle pain, angular cheilitis, acne on my face, IBS and so on.

100mcg absorbed AdoCbl/MeCbl is all that is needed to start the need for even 30mg of Metafolin. These items are not tied together in any ratio. It is more the B1, B2 and B3 and maybe other things that drive the relative needs for methylfolate and potassium. Also, the amount of l-methylfolate a person needs also depends on how well their body handles folic acid, folinic acid and veggie folates.

OK, so I titrate the folate and potassium until I don't have insufficiency symptoms.

How do I titrate the AdoCbl and MeCbl? Do I increase until I start to feel actually good? Basically, how will I know what doses I should use?

Btw, I recently backed off from the AdoCbl because I was getting strong anxiety symptoms. Is that a sign that I'm lacking a support nutrient, or is that just something I will need to tolerate until healing occurs?

Do I also titrate the B1, B2, and B3, or should they simply be taken at a steady dose?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Son of a b&&*&%^%$!!!! I thought B-Right was all methylfolate (this error due to my CFS brain). Welp, I definitely shouldn't have folic acid. Which b-multi do you use? Also, do you use a general multi, and if so, which one?



Yes, I think so. In general, I have migraines when I test the boundaries of my ME/CFS, and otherwise I don't. However, I also get onset of migraines without enough folate, and it quickly subsides if I add more folate.

What I think are the hypo-kalemia symptoms for me are twitches on my face, and a big increase in fatigue and dizziness.



OK, so I titrate the folate and potassium until I don't have insufficiency symptoms.

How do I titrate the AdoCbl and MeCbl? Do I increase until I start to feel actually good? Basically, how will I know what doses I should use?

Btw, I recently backed off from the AdoCbl because I was getting strong anxiety symptoms. Is that a sign that I'm lacking a support nutrient, or is that just something I will need to tolerate until healing occurs?

Do I also titrate the B1, B2, and B3, or should they simply be taken at a steady dose?

Hi Soporificat,

How do I titrate the AdoCbl and MeCbl? Do I increase until I start to feel actually good? Basically, how will I know what doses I should use?

Those can be titrated, usually the increase of the MeCbl is all that is needed until a further inxrease doesn't make any difference.


Btw, I recently backed off from the AdoCbl because I was getting strong anxiety symptoms. Is that a sign that I'm lacking a support nutrient, or is that just something I will need to tolerate until healing occurs?

How is you anxiety normally? How do you feel abort risk activities and thrill rides? I need this answer before I can answer the rest of this one.

At this point I am working out a 1 at a time titration of those three to try myself. I would suggest adding perhaps 25mg of one of them and waiting a couple of weeks and see what happens and proceeding from there.
 
Messages
70
thanks Freddd !!!! great thread you guys! lots of answers!
Freddd, i just want to say thanks for all of your work you put in here. i hope you stay healthy, and its possible that you have helped save my life, soon enough.and im only 21. bed bound w/ high histamine. i break out in hives if ever i get to hot or riled up(easily).. i need to methylate the histamine. excuse my fank-ness, but personally i dont have a reason to care about my cells or tissues or stuff "healing" , MY healing is lowering my histamine , im willing to take 100mg of MethylFolate a day if thats what it takes to generate enough THF and lower my histamine; even if that may be over doing the cell and tissue "healing" stuff. its just a "REAL" time in my life right now. i NEED to save my life, get healthy, get going. ive been a "recluse" for 2 years now.
i just need to take as much folate as possible without getting methyl blocked; for now i will take 30 mg folate//20mg(jarrow) b-12; and hope this combo generates enough THF for me,and hope it doesnt methylblock me,which would stop THF production.

im desperate, determined. THF lowers histamine, i will do whatever it takes to get the necessary amount of THF to lower my histamine.

im just saying why im here, yall. im not knocking ur guys' "healing". the amount of sympathy i have for "sick" people is absolutely ridiculously large now. please, get healthy by all means. and good luck.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
thanks Freddd !!!! great thread you guys! lots of answers!
Freddd, i just want to say thanks for all of your work you put in here. i hope you stay healthy, and its possible that you have helped save my life, soon enough.and im only 21. bed bound w/ high histamine. i break out in hives if ever i get to hot or riled up(easily).. i need to methylate the histamine. excuse my fank-ness, but personally i dont have a reason to care about my cells or tissues or stuff "healing" , MY healing is lowering my histamine , im willing to take 100mg of MethylFolate a day if thats what it takes to generate enough THF and lower my histamine; even if that may be over doing the cell and tissue "healing" stuff. its just a "REAL" time in my life right now. i NEED to save my life, get healthy, get going. ive been a "recluse" for 2 years now.
i just need to take as much folate as possible without getting methyl blocked; for now i will take 30 mg folate//20mg(jarrow) b-12; and hope this combo generates enough THF for me,and hope it doesnt methylblock me,which would stop THF production.

im desperate, determined. THF lowers histamine, i will do whatever it takes to get the necessary amount of THF to lower my histamine.

im just saying why im here, yall. im not knocking ur guys' "healing". the amount of sympathy i have for "sick" people is absolutely ridiculously large now. please, get healthy by all means. and good luck.

Hi GenDylan,

ENZYMATIC THERAPY B12 Infusion, but NOT JARROW MeCbl. It went bad about 15months or so ago. You likely will have better results. You also need AdoCbl and -carnitine fumarate to undo the major deadlocks in my experience. I used to have MCS, hot and cold running allergies and MCS. Good luck. It may be more balance than shear quantity.
 
Messages
52
Hi Soporificat,


Btw, I recently backed off from the AdoCbl because I was getting strong anxiety symptoms. Is that a sign that I'm lacking a support nutrient, or is that just something I will need to tolerate until healing occurs?

How is you anxiety normally? How do you feel abort risk activities and thrill rides? I need this answer before I can answer the rest of this one.

I don't have a straightforward answer. I don't really like risk activities or thrill rides, however, I also wouldn't say that I'm a very anxious person, generally--I just don't seek out things that are stressful. Anyway, the anxiety that came with the AdoCbl was way out of proportion and included heart palpitations. It was extremely unpleasant and not what I'm used to. Although, I would say that increased anxiety came along with the ME/CFS. However, that level of anxiety rose very significantly with the added AdoCbl.

I was able to calm it down somewhat with taking a dose of progesterone. Than I would take valerian to go to sleep.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I don't have a straightforward answer. I don't really like risk activities or thrill rides, however, I also wouldn't say that I'm a very anxious person, generally--I just don't seek out things that are stressful. Anyway, the anxiety that came with the AdoCbl was way out of proportion and included heart palpitations. It was extremely unpleasant and not what I'm used to. Although, I would say that increased anxiety came along with the ME/CFS. However, that level of anxiety rose very significantly with the added AdoCbl.

I was able to calm it down somewhat with taking a dose of progesterone. Than I would take valerian to go to sleep.

Hi Soporificat,

In the past decade I have seen several different causes for anxiety augmentation. There is an effect that affects some people to a degree but rarely just completely intolerable. It has to do with the ratio of AdoCbl to MeCbl. Sometimes when that gets out of balance, it has caused some anxiety and irritability.

Another thong that happens is that some people with a specific damage in the limbic system (part of the brain that affects a lot of emotions and such) when they start B12, especially AdoCbl. If the person is not taking l-carnitine fumarate, the AdoCbl effect often isn't too intense and tends to end in a few days as with AdoCbl it is a one or two time change usually, doesn't increase with the next AdoCbl dose and wears off after a while. However, If a person takes even a small dose of carnitine and goes through the roof with anxiety, panic, fear , anger etc. Interestingly sometimes TMG can take the edge off, shifting the balance like MeCbl. It is possible to microdose carnitine. There are those who have managed to microtitrate the carnitine and find that the anxiety diminishes over time as the nerves appear to heal.

Does any of this sound like it is similar to yours. It isn't a BAD sign. It's an indication of severity of deficiency and some of the damage which MIGHT be healable.
 
Messages
52
Hi Soporificat,

In the past decade I have seen several different causes for anxiety augmentation. There is an effect that affects some people to a degree but rarely just completely intolerable. It has to do with the ratio of AdoCbl to MeCbl. Sometimes when that gets out of balance, it has caused some anxiety and irritability.

Another thong that happens is that some people with a specific damage in the limbic system (part of the brain that affects a lot of emotions and such) when they start B12, especially AdoCbl. If the person is not taking l-carnitine fumarate, the AdoCbl effect often isn't too intense and tends to end in a few days as with AdoCbl it is a one or two time change usually, doesn't increase with the next AdoCbl dose and wears off after a while. However, If a person takes even a small dose of carnitine and goes through the roof with anxiety, panic, fear , anger etc. Interestingly sometimes TMG can take the edge off, shifting the balance like MeCbl. It is possible to microdose carnitine. There are those who have managed to microtitrate the carnitine and find that the anxiety diminishes over time as the nerves appear to heal.

Does any of this sound like it is similar to yours. It isn't a BAD sign. It's an indication of severity of deficiency and some of the damage which MIGHT be healable.
It would not surprise me AT ALL if I have damage to the limbic system, in particular the hippocampus.

I am taking 855mg of L-carnitine fumarate per day. What are your thoughts on just dealing with the anxiety with helpers such as progesterone, or TMG, vs. reducing the carnitine to a tiny amount? Basically, i want to get through things as fast as possible, and so am willing to tolerate things, however, of course I don't want to create additional problems. So, my question is: if the anxiety is due to limbic issues, will taking the full amount of carnitine with the AdoCbl speed healing or am I just setting myself up for misery and instead I should microtitrate?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
It would not surprise me AT ALL if I have damage to the limbic system, in particular the hippocampus.

I am taking 855mg of L-carnitine fumarate per day. What are your thoughts on just dealing with the anxiety with helpers such as progesterone, or TMG, vs. reducing the carnitine to a tiny amount? Basically, i want to get through things as fast as possible, and so am willing to tolerate things, however, of course I don't want to create additional problems. So, my question is: if the anxiety is due to limbic issues, will taking the full amount of carnitine with the AdoCbl speed healing or am I just setting myself up for misery and instead I should microtitrate?

Hi Soporificat,

The only people in whom I have seen improvement in this anxiety response to the LCF are the ones able to tolerate the feelings and the others to come as there is what looks like remission or healing that happens. My experience was volatility in moods in general and intensification after being really flat emotionally for a long time. As far as the amount, the people with the really extreme hyper responses can find 1mg orally intolerable. These are the people that have to microtitrate. The problem is that to heal the muscles and body one needs doses like 500mg of carnitine (what you are taking). However, at your level of response and "ordinary" titration might very well do the trick. I was blown away by a 125mg dose and probably could have started at 62.5mg. However, the TMG took most of the edge off and I was 6 months at 125mg, 3 months at 250mg and another 2 months at 500 before it faded away. Going to 1000mg did nothing. The response only comes back when I avoid it. It appears to be a key ingredient in stimulating the proliferation of mitochondria and the regrowth of muscles. It also is needed for the proliferation of osteoblasts in the bones and may help account for MeCbl being found to decrease second hip fractures in elderly women.
 
Messages
52
Hi Soporificat,

The only people in whom I have seen improvement in this anxiety response to the LCF are the ones able to tolerate the feelings and the others to come as there is what looks like remission or healing that happens. My experience was volatility in moods in general and intensification after being really flat emotionally for a long time. As far as the amount, the people with the really extreme hyper responses can find 1mg orally intolerable. These are the people that have to microtitrate. The problem is that to heal the muscles and body one needs doses like 500mg of carnitine (what you are taking). However, at your level of response and "ordinary" titration might very well do the trick. I was blown away by a 125mg dose and probably could have started at 62.5mg. However, the TMG took most of the edge off and I was 6 months at 125mg, 3 months at 250mg and another 2 months at 500 before it faded away. Going to 1000mg did nothing. The response only comes back when I avoid it. It appears to be a key ingredient in stimulating the proliferation of mitochondria and the regrowth of muscles. It also is needed for the proliferation of osteoblasts in the bones and may help account for MeCbl being found to decrease second hip fractures in elderly women.
Thank you, Freddd! That is good to know. As long as i know that I'm helping myself and not hurting myself, then I can get through the crap. I will continue with the 855mg of L-carnitine and just get through it. It's unpleasant, but not intolerable, especially with the "helpers" (progesterone, and I will try the TMG).

There are so many pitfalls and unknowns with the process, and I really appreciate you sharing your experiences and knowledge.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
thanks Freddd !!!! great thread you guys! lots of answers!
Freddd, i just want to say thanks for all of your work you put in here. i hope you stay healthy, and its possible that you have helped save my life, soon enough.and im only 21. bed bound w/ high histamine. i break out in hives if ever i get to hot or riled up(easily).. i need to methylate the histamine. excuse my fank-ness, but personally i dont have a reason to care about my cells or tissues or stuff "healing" , MY healing is lowering my histamine , im willing to take 100mg of MethylFolate a day if thats what it takes to generate enough THF and lower my histamine; even if that may be over doing the cell and tissue "healing" stuff. its just a "REAL" time in my life right now. i NEED to save my life, get healthy, get going. ive been a "recluse" for 2 years now.
i just need to take as much folate as possible without getting methyl blocked; for now i will take 30 mg folate//20mg(jarrow) b-12; and hope this combo generates enough THF for me,and hope it doesnt methylblock me,which would stop THF production.

im desperate, determined. THF lowers histamine, i will do whatever it takes to get the necessary amount of THF to lower my histamine.

im just saying why im here, yall. im not knocking ur guys' "healing". the amount of sympathy i have for "sick" people is absolutely ridiculously large now. please, get healthy by all means. and good luck.

GenDylan, I've had the opposite: too much mfolate has ramped up my histamine levels. I can now see 3 distinct periods when this has happened. I'm sure you're getting results based on your experience, but just want to point out another possibility. Hope you're out of that bed soon. BTW, I've just begun investigating the Mast Cell relationship to my histamine issues. There are forums here, and vids on youtube. Here are a few I've been looking at:

http://forums.phoenixrising.me/inde...rders-have-i-got-this-right.20442/#post-31151

http://forums.phoenixrising.me/index.php?threads/me-cfs-is-a-mast-cell-disorder-hypothesis.18437/

Forum: http://mastcelldisorders.wallack.us/yabb/YaBB.pl



Dr. Theo publications http://www.mastcellmaster.com/publications.php

http://www.allergynutrition.com/resources/seminars/Pivotal Role of Histamine in the Symptoms of Food Intolerance/PowerPoint Slides (33).pdf

http://www.mastocytosis.ca/signs.htm