CONFIRMED FOLATE DEFICIENCIES - PLEASE POST HERE

[rydra_wong]

Hi Rydra,

It is predictable and repeatable with folate. Get over it.

Also, "E" is denominated in IU, not mg or grams.

idk - maybe it was not this thread, but I read one recently where you wre having trouble making the chielitis go away, so it didnt sound all that predictable. I am not knocking folate, and no doubt everyone needs different amounts, but for me it takes E (given that I already take mfolate, and apparently was always getting mfolate via a diet high in milk and fish(?) [I am not sure I am reading the comment about the folate in milk and fish correctly].

Correct me all you want on the units...I am afraid I will never remember. Sometimes I just flat out say "units" because I always forget what the units are...

The one genetic defect I do not have that I think is common here is MTHFR 677 - which may be the one that makes people need higher amounts of mfolate. However , although I take way less than you, I would not say I take low mfolate. Somehow I think a study is flawed if anyone with a different experience is disqualified though...

 

[maddietod]

idk - maybe it was not this thread, but I read one recently where you wre having trouble making the chielitis go away, so it didnt sound all that predictable. I am not knocking folate, and no doubt everyone needs different amounts, but for me it takes E (given that I already take mfolate, and apparently was always getting mfolate via a diet high in milk and fish(?) [I am not sure I am reading the comment about the folate in milk and fish correctly].

Correct me all you want on the units...I am afraid I will never remember. Sometimes I just flat out say "units" because I always forget what the units are...

The one genetic defect I do not have that I think is common here is MTHFR 677 - which may be the one that makes people need higher amounts of mfolate. However , although I take way less than you, I would not say I take low mfolate. Somehow I think a study is flawed if anyone with a different experience is disqualified though...

Rydra, re. the folates in milk and fish. It's not that they're particularly high in folates. It's that the ones they do have are mostly methylfolate. I think milk has 12 - 14mcg per cup.

 

[yboldt14]

Been away for a while but trying got jump back in. Not sure if this has been experienced by others, but after some fantastic and repeatable responses to folate, via titrating up solgar metafolin to about 15mg/day and then deplin up to 90mg/day (you're reading that right), somewhere along the line, my positive reactions turned terribly negative. Overwhelming fog and exhaustion crept in. It took quite a bit of experimenting to realize what was causing it. It probably should have been obvious, but the fog was so strong I could barely function. It's hard to see what would otherwise be apparent in that state. But I have no doubt now that it was the methylfolate. I have since been trying smaller and smaller doses, but each time, without fail, and despite different combinations with other vitamins and minerals (including b complexes), I get a distinct flaring of my symptoms. After a day or so of stopping, just about everything recedes (assuming because folate is water soluble its rapidly excreted, yes?). Hoping for some thoughts. I have been seeing Scott Smith for about 18 months now - I've seen him referenced a few times here for his work on folate binding and blocking antibodies, which I tested positive for - and we are considering some different possibilities. I'm his first patient to try this high of a dosage with. Though, I haven't seen him since learning that even 800mcg of metafolin brings on a negative reaction. For those interested, here is a video of a presentation/webinar he gave recently on the folate antibody research:

http://www.youtube.com/watch?v=A2Nu83rOnn4

I haven't watched the video yet, as a disclaimer.

He said some heavy hitters in the medical community have been reaching out to him to learn more, so we'll see where this goes. I was happy to see Rich and Freddd and others still hard at work here. I don't have the background, or mental clarity, to keep up with this site the way I'd like to. Life has provided enough failure to occupy my time. Trying though...

Final note for now: don't remember seeing it mentioned too many times on Wrong Diagnosis, but taurine has been a huge supplement for me. I have unbelievable magnesium issues, and I'm told taurine is involved with magnesium utilization in some way that I won't pretend to remember or understand, but after going off of it while I did these folate trials, and restarting yesterday, I'm reacting strongly again. Biggest improvement is to my tremor. Brings a calmness to my core that is very welcomed. Also some help with fog and digestion.

Hope everyone is progressing.

Jeff

 

[Freddd]

Been away for a while but trying got jump back in. Not sure if this has been experienced by others, but after some fantastic and repeatable responses to folate, via titrating up solgar metafolin to about 15mg/day and then deplin up to 90mg/day (you're reading that right), somewhere along the line, my positive reactions turned terribly negative. Overwhelming fog and exhaustion crept in. It took quite a bit of experimenting to realize what was causing it. It probably should have been obvious, but the fog was so strong I could barely function. It's hard to see what would otherwise be apparent in that state. But I have no doubt now that it was the methylfolate. I have since been trying smaller and smaller doses, but each time, without fail, and despite different combinations with other vitamins and minerals (including b complexes), I get a distinct flaring of my symptoms. After a day or so of stopping, just about everything recedes (assuming because folate is water soluble its rapidly excreted, yes?). Hoping for some thoughts. I have been seeing Scott Smith for about 18 months now - I've seen him referenced a few times here for his work on folate binding and blocking antibodies, which I tested positive for - and we are considering some different possibilities. I'm his first patient to try this high of a dosage with. Though, I haven't seen him since learning that even 800mcg of metafolin brings on a negative reaction. For those interested, here is a video of a presentation/webinar he gave recently on the folate antibody research:

http://www.youtube.com/watch?v=A2Nu83rOnn4

I haven't watched the video yet, as a disclaimer.

He said some heavy hitters in the medical community have been reaching out to him to learn more, so we'll see where this goes. I was happy to see Rich and Freddd and others still hard at work here. I don't have the background, or mental clarity, to keep up with this site the way I'd like to. Life has provided enough failure to occupy my time. Trying though...

Final note for now: don't remember seeing it mentioned too many times on Wrong Diagnosis, but taurine has been a huge supplement for me. I have unbelievable magnesium issues, and I'm told taurine is involved with magnesium utilization in some way that I won't pretend to remember or understand, but after going off of it while I did these folate trials, and restarting yesterday, I'm reacting strongly again. Biggest improvement is to my tremor. Brings a calmness to my core that is very welcomed. Also some help with fog and digestion.

Hope everyone is progressing.

Jeff

Hi Jeff,

Something you might find applicable is the relationship of Metafolin dose to low potassium. At least one person has found that the more Metafolin they took the lower their potassium went which causes potentially severe problems if not corrected. Many of the people getting "negative" reactions with Metafolin have been experiencing low potassium. It's important to distinguish because low poassium can be up to and including fatal and is correctable. Also, there are questions of balance with mb12 at least whose answers are not known at present.

 

[L'engle]

Is deplin different from methylfolate, other than being by prescription?

 

[richvank]

Is deplin different from methylfolate, other than being by prescription?

Hi, L'engle.

Deplin contains calcium-bound methylfolate, made by the Merck process. Metafolin and FolaPro are made from the same Merck product. Gnosis, in Austria, makes a methylfolate that is bound to glucosamine. That's what's in MethylMate B and also in the product sold by Allergy Research Group that is now part of the Pall protocol. It is necessary to bind methylfolate to something to make it chemically stable so that it can be shipped and stored.

Deplin comes in dosages of 7.5 and 15 milligrams. In my opinion, those dosages are far higher than are needed to treat ME/CFS, when combined with milligram-level dosages of B12 given sublingually, transdermally, liposomally or by injection. I do not favor using high dosages (several milligrams) of methylfolate and methyl B12 together. This removes control of the rate of the methionine synthase reaction from the cells, and overdrives the methylation cycle and the folate metabolism. The results are that glutathione does not come up as it should, and the cell division goes much faster, producing new cells more rapidly than the potassium supply can keep up with it. This raises the risk of going low in potassium (hypokalemia), which can have serious effects on the heartbeat and other vital functions controlled by the nervous system. I think it's a better idea to take things a little more slowly and let the body adjust to the big changes that are made when the B12 function, the methylation cycle, the folate metabolism, and glutathione are being restored to normal.

Best regards,

Rich

 

[rydra_wong]

Been away for a while but trying got jump back in. Not sure if this has been experienced by others, but after some fantastic and repeatable responses to folate, via titrating up solgar metafolin to about 15mg/day and then deplin up to 90mg/day (you're reading that right), somewhere along the line, my positive reactions turned terribly negative. Overwhelming fog and exhaustion crept in. It took quite a bit of experimenting to realize what was causing it. It probably should have been obvious, but the fog was so strong I could barely function. It's hard to see what would otherwise be apparent in that state. But I have no doubt now that it was the methylfolate. I have since been trying smaller and smaller doses, but each time, without fail, and despite different combinations with other vitamins and minerals (including b complexes), I get a distinct flaring of my symptoms. After a day or so of stopping, just about everything recedes (assuming because folate is water soluble its rapidly excreted, yes?). Hoping for some thoughts. I have been seeing Scott Smith for about 18 months now - I've seen him referenced a few times here for his work on folate binding and blocking antibodies, which I tested positive for - and we are considering some different possibilities. I'm his first patient to try this high of a dosage with. Though, I haven't seen him since learning that even 800mcg of metafolin brings on a negative reaction. For those interested, here is a video of a presentation/webinar he gave recently on the folate antibody research:

http://www.youtube.com/watch?v=A2Nu83rOnn4

I haven't watched the video yet, as a disclaimer.

He said some heavy hitters in the medical community have been reaching out to him to learn more, so we'll see where this goes. I was happy to see Rich and Freddd and others still hard at work here. I don't have the background, or mental clarity, to keep up with this site the way I'd like to. Life has provided enough failure to occupy my time. Trying though...

Final note for now: don't remember seeing it mentioned too many times on Wrong Diagnosis, but taurine has been a huge supplement for me. I have unbelievable magnesium issues, and I'm told taurine is involved with magnesium utilization in some way that I won't pretend to remember or understand, but after going off of it while I did these folate trials, and restarting yesterday, I'm reacting strongly again. Biggest improvement is to my tremor. Brings a calmness to my core that is very welcomed. Also some help with fog and digestion.

Hope everyone is progressing.

Jeff

Jeff, I thought you were ging to that child autism doctor (forget his name). Wasn't he able to help you? How much protein do you eat? You know the breakdown product is ammonia and that takes magnesium to excrete, right?
Also magnesium is an alkaline mineral so if you are acidic for whatever reason (Vitamin D insufficiency, microorganisms giving off acid wastes, lactate production due to insufficient Kreb nutrients, or other reason), the body can
potentially rob magnesium to counter the acidity. Have you looked into these sorts of things?

Too bad, I thought that autism doc was fixing you up...

Rydra

 

[place]

This thread is helpful.
I have the following: angular cheilitis (sores ar corner of mouth), nausea, malaise, increase allergy, asthma, inflammation, depression, irritability, cold feet, lower potassium when folate deficiency corrected.
This is the majority of my issues.

As far as cheilitis, I did not know what I had, had a name but I take olive leaf extract and it goes a way within 12 hours. I think you can get it from a lot of things and therefore several things can help get rid of it. I think I got mine form kissing the Blarney stone =(

Also mentioned was the think stick mucus in sinus. I have this and it was the start of all my symptoms. If I get the mucus out, I will see a lot of relief. I would really like to solve this issue, any suggestions?


As far as mfolate. I believe I am a one with this issues. I do have homo of 677. I had fixed my mfolate does and experimented with upping mb12. got some changes but nothing like when I change mfolate dose yesterday. I get a noticable surge in energy that leaves me TOO restless. I can't sit down or calm down, my ADD is worse. Potassium does seem to quiet me but taking 600 is not enough to last long.

I am going to continue to play with the dose of mfolate, potassium and magnesium. Keeping mb12 at 15mg.

 

[Freddd]

Hi Place,

The Metafolin is turning on the methylb12. It is the lack of metafolin that is limiting healing most likely. Reduce to 5mg of mb12 and see if that allows you to take more Metafolin. Otherwise, I would suggest dropping to 1mg of mb12 until you can get the Metafolin up to the zones that allows good healing.

600mg of potassium might be only 1/4 of what you need. I take 3 doses of 600 and 2 more doses of 300-300mg daily as needed.

Also mentioned was the think stick mucus in sinus. I have this and it was the start of all my symptoms. If I get the mucus out, I will see a lot of relief. I would really like to solve this issue, any suggestions?
When you get the mb12, adb12, metawqfolin and potassium and a few other things in balance and healing is proceeding across all fronts the muscous tssues will heal and generate a thinner mucous that drains. This thick sticky mucous is symptomatic of these deficiencies.

 

[Freddd]

Hi, L'engle.

Deplin contains calcium-bound methylfolate, made by the Merck process. Metafolin and FolaPro are made from the same Merck product. Gnosis, in Austria, makes a methylfolate that is bound to glucosamine. That's what's in MethylMate B and also in the product sold by Allergy Research Group that is now part of the Pall protocol. It is necessary to bind methylfolate to something to make it chemically stable so that it can be shipped and stored.

Deplin comes in dosages of 7.5 and 15 milligrams. In my opinion, those dosages are far higher than are needed to treat ME/CFS, when combined with milligram-level dosages of B12 given sublingually, transdermally, liposomally or by injection. I do not favor using high dosages (several milligrams) of methylfolate and methyl B12 together. This removes control of the rate of the methionine synthase reaction from the cells, and overdrives the methylation cycle and the folate metabolism. The results are that glutathione does not come up as it should, and the cell division goes much faster, producing new cells more rapidly than the potassium supply can keep up with it. This raises the risk of going low in potassium (hypokalemia), which can have serious effects on the heartbeat and other vital functions controlled by the nervous system. I think it's a better idea to take things a little more slowly and let the body adjust to the big changes that are made when the B12 function, the methylation cycle, the folate metabolism, and glutathione are being restored to normal.

Best regards,

Rich

Hi Rich,

I believe that you have this very wrong.

50-100mcg of mb12/adb12 combination will turn on healing requiring around 2000-3000mg of potassium and 1600-3200mcg of Metafolin for NO paradoxical folate deficiency, about 6000-800mcg or so if one has Folic acid only paradoxical folate deficiency and 12+mg of Metafolin if a person has folinic acid paradoxica folate deficiency. At least that is how it appears to stack up.

This is equally true if the person is taking 50mcg of mb12 or 50,000mcg of mb2. Dose size of mb12 does not drive metafolin dose need as long as it is enough to turn on healing which occurs around 50mcg for most persons. Also, potassium and Metafolin don't drive each other. Mb12 can switch on one ort more layers of healing. Adb12 can switch on 1 layer of healing. Each of these layers relates to both potassium and Metafolin doses, increaing the need slightly when the additional layer is activated.

The required Metafolin dose relates far more to type of paradoxical folate deficiency than anything else. As I am advising titrating by effect to reduece and remove low potassium and low folate symptoms most folks remain on the bottom of the range as they are titrating up from below.

 

[place]

Freddd, so help me God, if this protocol gets rid of my sinus issue. I am naming my next dog after you. Three d's and all!

 

[Freddd]

Freddd, so help me God, if this protocol gets rid of my sinus issue. I am naming my next dog after you. Three d's and all!

I had that mucous issue for decades, no more. Good luck.

 

[iacyi]

12mg+ methylfolate for folinic intolerant people sounds expensive...
How much difference does a low veggie-folate diet make?
Also, is all veggie folate the same? I figure I will just find a list of high-folate vegetables and avoid them as much as possible.
-
Thought I would share my experience so far with folate deficiency as well...

I started with one drop hydroxocobalamin, along with a folinic acid supplement: Within an hour my stomach was feeling sensitive, over the first day fatigue worsened, lower back pain, strong nausea and a feeling of "short-circuiting" nerves; first night I kept waking with aches all over and bad gut pain; second day was spent mostly on the toilet with diarrhoea to the point where it was mostly water, angular chelitis too; no appetite for both days.

On the first evening I took ~400mcg methylfolate which made the nausea tolerable. I stopped the hydroxo after that one drop; way too intense for me. I took a couple of 800mcg tablets on the second afternoon and the diarrhoea went away.

I had been taking folinic acid for a couple of weeks prior and was becoming increasingly uncoordinated without realising. A lot of my long term symptoms in fact are similar to folate deficiency.

I have restarted the hydroxo without the folinic now and am doing OK. I decided on the SMP so as not to overwhelm myself, since I am starting a couple of other protocols as well.

A few days ago I ate some peanut butter and the day after I had non-stop diarrhoea again until I took extra folate. I guess peanuts are high in the wrong kind of folate? I get occasional palpitations and probably other subtle symptoms I'm missing. Currently I'm taking 1600-2400mcg Solgar methylfolate; I was a bit worried in case I wasn't getting enough B12 to prevent that subacute combined degeneration thingy.

 

[Freddd]

HI Iacyi,

I don't know that peanut butter has much folate and eating a food with folate doesn't cause immediate diarrhea. The IBS-diarrhea can come on about the 5th day of folate deficiency/insufficincy. Usually it's accompanied by a number of even quicker signs like angular cheilitis or peeling fingertips and such. However, mb12 deficiency in general can also cause such problems too. Hydroxycbl might not put enough mb12 and adb12 into the brain to stop subacute combined degeneration. That specifically requires both b12s and often at high concentration. There are so many ways that hydroxycbl can go wrong in that I'm not going to go through them all. Palpitations can be cause by all sort of lacks as well. The Metafolin is one of the most expensive single items I take, about $2.50/day. I spend $20/week for food and $30+/week for vitamins and such.

The mb12 and adb12 can be titrated to keep things reasonable. There is no way to turn on the brain neurons without turning them on and as far as I know, and no way to heal without turning them on. Also, they are quite predictable. If you haven't had an increased need for potassium and Metafolin, you likely haven't started healing in any significant way.

 

[iacyi]

Thanks Freddd. I will be glad if I don't have vegetable folate problems.

I thought it might be B12 deficiency after another member suggested it, but methylfolate seems to be the only supplement I've tried that stops the symptoms. The same dose of hycbl without the folinic didn't cause any problems, but perhaps some hycbl from the few days earlier was hanging around, or something else entirely; I'm struggling to put the pieces together in my head. I'm reluctant to experiment now after my initial experience.

The angular chelitis set in overnight I think, so a few hours before the diarrhoea. I don't know if loading up on folinic acid in the weeks prior was able to speed things up, since it isn't supposed to be stored.

The peanut thing is a mystery to me. I kept putting off upping the mfolate, thinking it must be food sensitivity, but after it wouldn't go away I tried it and it seemed to stop. The timing seemed similar to after the hycbl. It was a milder reaction, so maybe I will try it again to make sure the mfolate helping wasn't a fluke.

Yesterday I tried upping mfolate to 2400mcg instead of my usual 800 or 1600. When I went to bed I became nauseous. I remembered the donut hole effect because I thought I had things sussed, so I took another pill. I can't remember if it worked before I fell asleep or not, so not a useful anecdote! Anyway, to avoid the chance of SACD I will cut back on the mfolate while I go through the SMP.

Other members' description of bumping into doorframes and not wanting to speak were what made me latch on to the idea; I'm still kind of attached to it, even though it doesn't make as much sense as I had hoped.

 

[Freddd]

Thanks Freddd. I will be glad if I don't have vegetable folate problems.

I thought it might be B12 deficiency after another member suggested it, but methylfolate seems to be the only supplement I've tried that stops the symptoms. The same dose of hycbl without the folinic didn't cause any problems, but perhaps some hycbl from the few days earlier was hanging around, or something else entirely; I'm struggling to put the pieces together in my head. I'm reluctant to experiment now after my initial experience.

The angular chelitis set in overnight I think, so a few hours before the diarrhoea. I don't know if loading up on folinic acid in the weeks prior was able to speed things up, since it isn't supposed to be stored.

The peanut thing is a mystery to me. I kept putting off upping the mfolate, thinking it must be food sensitivity, but after it wouldn't go away I tried it and it seemed to stop. The timing seemed similar to after the hycbl. It was a milder reaction, so maybe I will try it again to make sure the mfolate helping wasn't a fluke.

Yesterday I tried upping mfolate to 2400mcg instead of my usual 800 or 1600. When I went to bed I became nauseous. I remembered the donut hole effect because I thought I had things sussed, so I took another pill. I can't remember if it worked before I fell asleep or not, so not a useful anecdote! Anyway, to avoid the chance of SACD I will cut back on the mfolate while I go through the SMP.

Other members' description of bumping into doorframes and not wanting to speak were what made me latch on to the idea; I'm still kind of attached to it, even though it doesn't make as much sense as I had hoped.

Hi IACYI,

My opinion is that perhpas you woiud want to not do the folinic acid. You have a good response to the Metafolin and it reverses the cheilitis and IBS, keep it going. The problem with the folic acid and folinic acid is that the uncoverted forms of them can accumulate over several days and block the metafolin. Titrating the metafolin after removing the folinic acid should be followed by a response of the IBS , chelitis and peeling finger tips. The key in this is find the clues, the things that show real improvment, and sometimes those can be uncomfortable, especailly the neurological, and follow up on the clues. You have some good clues here. The folinic acid problem. It only takes a couple of days for it to diminish if you don't keep taking it. The problem is folate in the veggies is generally additive to the folinic acid for problems. I find I have to moderate the amount of veggies I eat and take the Metafolin in a pattern that gets enough into my cells. The hycbl and metafolin can certainly start healing enough for you to see the clues. There is no need to stop the metafolin if that is what is producing the healing effect. Perhaps a titration by 400mcg at a time would be more comfortable. If you start having certain types of neurological problems increasing you can start adding the other b12s as needed, also titrating in a crossover pattern. Don't turn you nback on the best clues you have had so far.

 

[kelly138]

I am still on page 1 of this thread

Last fall I started taking folinic acid - the tablets were 800 mcg - I started with around half of one. After about 6 days I upped that to a full tablet. That lasted about 2 or 3 days. I was really out of it - bad right sided headache and feeling more and more toxic. I rarely got that bad when I had lots of enriched foods (ie folic acid) but I did see it since a few weeks ago with some folic acid in a supplement I trialed with some "good" bread.

I stopped the folinic acid and about 3 or 4 days later the fog started to lift. I haven't touched it since and won't even if told to take it.

It's hard to sort out what all caused all the reactions over the years. How much of all this brain fog was caused by folic acid. The folinic acid reaction is pretty clear once it was just that I had added and got so sick on.