CONFIRMED FOLATE DEFICIENCIES - PLEASE POST HERE

[Freddd]

@Freddd,
When I say testing folic or folinic, I am talking about doing what you mentioned -- just dietary. I ditched supplemental folic/folinic back in December if not longer ago, but I am trying to see how much blocking I can get if I take at least 3200 methylfolate before a meal, but I am somewhat deathly afraid of the leafy greens I love so dearly, and I don't want to start eating them again for a bit, at least until I am remembering to take the methylfolate before each meal. Tonight, we went out, I forgot my dose before the meal, but took a rescue dose of probably 9 mg sublingually as soon as I got home.

I am seriously considering getting the compounding pharmacist to work up a 24 hour time release methylfolate of at least 15 mg, maybe 20. The docs and I are talking about it. I hate to have a two day set back just because I forgot my dose.

another symptom of PFD-- The mouth sores that many people get at start up I got again after my bad folic acid week after they had been gone a couple of weeks. It was notable. I did not have neuropathy on the bottoms of my feet after hyperbarics today, which was good.

Hi Rosebud,

I don't think that would do the trick. If it did, then the doses I take on wakeup and other times duing the day would maintain my folate effectiveness. It helps but not without the doses taken with food or a minute before eating that is mixed with and has combined absorbtion. If the foilic acid and/or folinic are not blocked from being absorbed they end up blocking the Metafolin once they get in the blood. I can take the Metafolin all day without food and still have deficiency if I don't also take it with the food. I already tried that.

 

[Rosebud Dairy]

Thank you.

I have been wondering about that.

If taking WITH food is found to be more effective, then I will go with that.

I was hoping that getting Metafolin into the blood right before the meal would perhaps block more folic/folinic.

Taking it every three hours, on the half-life, would not do the trick then?

Thank you for the input!

 

[Rosebud Dairy]

So, with the meal is more effective that just before the meal? -- for those of us who will forget unless the Metafolin bottle is sitting right beside the knife block and cutting board.

Today is day 2 after forgetting to pre-load before Saturday's supper out, and the IBS is going, but I also tested a Diet Coke and two spears of raw pineapple yesterday. I think I am at the end of a stomach virus, as my preschooler got sick all over me in the middle of the night last week, so I caught her germs.

On morning of Day 1 after forgetting a pre-load, my sinuses were too clogged up, even after two different nasal decongestants, to go into hyperbarics, even though the day before I was just fine going down to 2.0 ATA at hyperbarics. I couldn't even get to 1.2 ATA without knife like pains in my eyebrow area.

The "thickening mucous" symptom seems to possibly be a PFD symptom, as I now feel like it is turning into a full blown sinus infection, seemingly overnight.

Have you seen this occur in you or in others you track?

 

[Freddd]

So, with the meal is more effective that just before the meal? -- for those of us who will forget unless the Metafolin bottle is sitting right beside the knife block and cutting board.

Today is day 2 after forgetting to pre-load before Saturday's supper out, and the IBS is going, but I also tested a Diet Coke and two spears of raw pineapple yesterday. I think I am at the end of a stomach virus, as my preschooler got sick all over me in the middle of the night last week, so I caught her germs.

On morning of Day 1 after forgetting a pre-load, my sinuses were too clogged up, even after two different nasal decongestants, to go into hyperbarics, even though the day before I was just fine going down to 2.0 ATA at hyperbarics. I couldn't even get to 1.2 ATA without knife like pains in my eyebrow area.

The "thickening mucous" symptom seems to possibly be a PFD symptom, as I now feel like it is turning into a full blown sinus infection, seemingly overnight.

Have you seen this occur in you or in others you track?

Hi Rosebud,

Thick and sticky mucous was a probem for me 50+ years. It was an aqways thing thayt got a little worse or a little better but for no discernable reasons. It doesn't seem to come back that quickly for me but that is why I'm asking these questions, so we can spot it based on all sorts of things for many people. Most only seen to have a few quick symptoms out of 30 or 40 over time.

 

[Rosebud Dairy]

5-10 symptoms returned at most.
feet neuropathy
headache
foggy head
some dizziness and nausea
back pain at old injuries
mucousal changes - thickening of mucous with tissue inflammation
The mucous was so notable, as it kept me from being in the hyperbaric tank to keep my son company (concussion).

I may have had a cold coming on anyway. The kids have been sick with that and stomach virus,
but heck, if this is the NEW on-protocol stomach virus, I can live with it.

I just have to figure out how much of a role that lone diet coke yesterday played.

I was thinking, maybe the FAP is better for those with with neuropathies, and that the other protocol might be better suited to those who have fatigue without neuropathies or for those who might not have so much at stake with the twitching, fumbling, tripping and clumsiness.

I didn't realize how much neuropathy I had until it started going away.

 

[Rosebud Dairy]

Now I am just worried about an upcoming possible potassium drop that I will discuss with my doctor tomorrow. I am planning to deal with this one ahead of time.

I'd rather not take k-dur, but will if necessary.

Taking m-folate WITH meals, not just sublingual before -- although I was having some pretty good abatement of symptoms this way - had achieved a steady state for about two weeks, excepting the potassium drop.

Now my basal temps have dropped one full degree after being off thyroid for 3-4 weeks. may consider trying Armour generic or back on T3, but want to wait on this.

will probably stick with progesterone

 

[dannybex]

Hi Fred,

Really weird, (but typical) question from Uncle Dan:

How is one to go about 'confirming' that symptoms are due precisely to folate deficiencies? Plasma, serum, WBC folate???

THANKS.

 

[Freddd]

Hi Fred,

Really weird, (but typical) question from Uncle Dan:

How is one to go about 'confirming' that symptoms are due precisely to folate deficiencies? Plasma, serum, WBC folate???

THANKS.

Hi Dan,

By trials, A-B-A-B. Learn how to make it come back and go away. This becomes easiest by being able to identfy the symptoms that come and go with potassium vs those that come and go with Metafolin and folic acid or folinic acid or food folate adjustments. Find which symptoms are unique to folate, ie IBS, cheilitis, canker sores or whatever. Find which with potassium, ie spasms, nausea, headaches, heart palpitations or whatever.

 

[maddietod]

Dannybex - I'm having trouble figuring this out too, so I'm running experiments on myself. I've got a thread about my process, and I'd love for other people to come share their experiments. I figure I'll post results here once I've got some useful information.

Madie

 

[dannybex]

Hi Dan,

By trials, A-B-A-B. Learn how to make it come back and go away. This becomes easiest by being able to identfy the symptoms that come and go with potassium vs those that come and go with Metafolin and folic acid or folinic acid or food folate adjustments. Find which symptoms are unique to folate, ie IBS, cheilitis, canker sores or whatever. Find which with potassium, ie spasms, nausea, headaches, heart palpitations or whatever.

I understand what you're saying, but the problem is, so many of the symptoms of folate deficiency (at least on your list) can be similar to those of other deficiencies or imbalances. Cheilitis, at least if you're talking about angular cheilitis, can be caused by deficiencies of riboflavin, zinc, iron, b12, folate, etc.. Palpitations have a zillion different causes (well, maybe a dozen or so)...so wouldn't a blood test be the only way to truly confirm it's indeed a folate deficiency?

???

 

[maddietod]

Hi, Freddd,

I did a search this morning and found this:

"Most previous and recent studies using HPLC indicate that 5-methyl-tetrahydrofolate (5-methyl-THF) is the major folate form in milk"

And this:

"Very low levels of folates were detected in meat and meat products. Fresh fish, fish sticks, and chicken meat contained reasonable amounts (3-13 micrograms/100 g) of tetrahydrofolate and 5-methyltetrahydrofolate. Egg yolk contained high concentrations of 5-methyltetrahydrofolate (140-150 micrograms/100 g); 10-formylfolic acid was also detected (14-17 micrograms/100 g). Between-species differences in folate monoglutamate distributions were observed. The highest levels of tetrahydrofolate, > 5 micrograms/100 g, were found in chicken meat and fillets of rainbow trout, whitefish, and baltic herring. Tetrahydrofolate was most abundant in fresh fish."

 

[dannybex]

Dannybex - I'm having trouble figuring this out too, so I'm running experiments on myself. I've got a thread about my process, and I'd love for other people to come share their experiments. I figure I'll post results here once I've got some useful information.

Madie

Hi Madie,

Sorry I couldn't reply last night -- was on the computer too long, up too late! I tried your link however, and it didn't seem to work.

???

 

[Freddd]

I understand what you're saying, but the problem is, so many of the symptoms of folate deficiency (at least on your list) can be similar to those of other deficiencies or imbalances. Cheilitis, at least if you're talking about angular cheilitis, can be caused by deficiencies of riboflavin, zinc, iron, b12, folate, etc.. Palpitations have a zillion different causes (well, maybe a dozen or so)...so wouldn't a blood test be the only way to truly confirm it's indeed a folate deficiency?

???

Hi Dan,

When the ONLY thing you vary is the form of folate, ie folic acid alternating with methylfolate, and certain characteristics change in concert with the changes, ie cheilitis in 2 days, IBS in 5 days, change back to methylfolate and the cheilitis starts healing in 24 hours, the IBS is gone in 4 days and the cheilitis in 2 weeks, and you do it a couple of times, and everything else is being held steady, it is only the folate. The same pattern can be performed with each item, take it or elliminate it for trial periods and you can see if you can cause it to go away if it is during the folic acid part or to casue it to appear if during the methylfolate part. Palpitations are not a good choice becasue those can happen on borh ends for different reasons, ie blocked methylfolate (NOT LOW FOLATE, BLOCKED) with folic acid or startup response dropping potassium with methylfolate.

With a little tedous testing you can elliminate the possiblity of those other items. While there may be a way to test for blocked folate, Rich would be the one to ask about that, the effect can be demonstated at minor cost and inconvienience and in a matter of days. With a lack of methyfolate the other items may not be utilized by the affected cells either. Cheilitis from low b12 can take up to 7 years after the last dose or so to appear whereas blocked folate deficiency symptoms can start showing up in hours after it is blocked. "Low" has different characteristics from "blocked". Time of onset is one of those. Stopping all vitamins and supplements won't cause cheilitis for who knows how long, perhaps weeks to years depending up on what is run out first. How long did it take beriberi and pellagra to show up? How long for scurvy to show up? The blocking action is far faster.

 

[maddietod]

Hi Madie,

Sorry I couldn't reply last night -- was on the computer too long, up too late! I tried your link however, and it didn't seem to work.

???

Sorry; I fixed the link.

 

[drex13]

Gloria H.
Gnosis makes the L-methylfolate that is contained in the MethylMate B drops. I assume this is the same thing as Quatrefolic. I just ordered two bottles of Swansons ultra folate, which is Quatrefolic (L-5 methyltetrahydrofolate), which should be the same as or very similar to Metafolin. I ordered this instead of the Solgar/Metafolin because I believe I have an issue with the sugar alcohols that are used to sweeten both the Solgar tabs and the Jarrow Methyl b-12 tabs. I should know fairly quickly as the Swanson tabs have no sugar alcohols. I had no digestive issues using Methyl Mate B drops (before the glutathione was added to the formula), which are sweetened with Trehalose.

 

[rydra_wong]

I understand what you're saying, but the problem is, so many of the symptoms of folate deficiency (at least on your list) can be similar to those of other deficiencies or imbalances. Cheilitis, at least if you're talking about angular cheilitis, can be caused by deficiencies of riboflavin, zinc, iron, b12, folate, etc.. Palpitations have a zillion different causes (well, maybe a dozen or so)...so wouldn't a blood test be the only way to truly confirm it's indeed a folate deficiency?

???

I posted this on a bunch of threads - this conference is so disjoint - but - what the heck, why not here?! I found something QUITE different from what Freddd is saying (and I have the folate deficiency mutation as well as many others).

The only time I EVER got angular chielitis in my entire life was when I ran out of Vitamin E. My mother gave me 400 IU Vitamin E when I was just a baby as I was a sickly kid (also a multiple, C, maybe some lecithin...whatever she had just read about, but always C, E, multi). WHen I was 12, I started taking inactive B100 and did so the rest of my life until a few years ago when I started active B's (Thorne) 2x/day. When I was 20 I started taking 1g d-appha-tocopherol and continued the entire rest of my life - never missed a day. Until one day this past fall I ran out of E (still taking the 2x/day Thorne) and suddenly 1st time EVER got angular chielitis. I ran out and bought grocery store E until I could order it and the angular chielitis went away in a few days (time it took to heal the scabs). I also skipped all the B's except the 2x/day Thorne Basic B (which includes folinic acid) and still did NOT GET angulat chielitis. It was only the missing E that did it.

Looked it up and found the two things I read could cause it were insufficient B complex or insufficient E. In MY experience, it does not take that much B to prevent it. Takes at least 400 IU of E (or maybe more now as I take 1 g. now and may have more oxidative stress).

You might try E for angular chielitis. I do NOT have it and am NEVER in danger of getting it - am stably without it, so I think that makes my advise on this worthwhile. No mega anything required. But it is a blood thinner and if you are on meds, better get your doctor in the loop.

Rydra

P.S. Although I have more genetic mutations than anyone here (as far as I have seen), I also have other defects that have not been measured - such as my family tends to gout, whihc is high uric acid. Uric acid is an antioxidant so I probably have a natural antioxidant going for me that makes me different in a critical way from many of you. I guess no one can be REALLY sure if what applies to them applies to anyone else.

 

[Freddd]

I posted this on a bunch of threads - this conference is so disjoint - but - what the heck, why not here?! I found something QUITE different from what Freddd is saying (and I have the folate deficiency mutation as well as many others).

The only time I EVER got angular chielitis in my entire life was when I ran out of Vitamin E. My mother gave me 400 IU Vitamin E when I was just a baby as I was a sickly kid (also a multiple, C, maybe some lecithin...whatever she had just read about, but always C, E, multi). WHen I was 12, I started taking inactive B100 and did so the rest of my life until a few years ago when I started active B's (Thorne) 2x/day. When I was 20 I started taking 1g d-appha-tocopherol and continued the entire rest of my life - never missed a day. Until one day this past fall I ran out of E (still taking the 2x/day Thorne) and suddenly 1st time EVER got angular chielitis. I ran out and bought grocery store E until I could order it and the angular chielitis went away in a few days (time it took to heal the scabs). I also skipped all the B's except the 2x/day Thorne Basic B (which includes folinic acid) and still did NOT GET angulat chielitis. It was only the missing E that did it.

Looked it up and found the two things I read could cause it were insufficient B complex or insufficient E. In MY experience, it does not take that much B to prevent it. Takes at least 400 IU of E (or maybe more now as I take 1 g. now and may have more oxidative stress).

You might try E for angular chielitis. I do NOT have it and am NEVER in danger of getting it - am stably without it, so I think that makes my advise on this worthwhile. No mega anything required. But it is a blood thinner and if you are on meds, better get your doctor in the loop.

Rydra

P.S. Although I have more genetic mutations than anyone here (as far as I have seen), I also have other defects that have not been measured - such as my family tends to gout, whihc is high uric acid. Uric acid is an antioxidant so I probably have a natural antioxidant going for me that makes me different in a critical way from many of you. I guess no one can be REALLY sure if what applies to them applies to anyone else.

HI Rydra,

That may very well be, there are several possiblities. However when it changes in relation with the type of folate being taken, and other synptoms changes as well in concert with folate changes it is the folate, not the E, which can be subject to all it's own trials and people can tst the hypotheis. Also B2 and B12 can be involved. That's what all these things are non-specific. That's why A-B testing is the only way to establish this for any given person.

 

[rydra_wong]

HI Rydra,

That may very well be, there are several possiblities. However when it cvhanges in realtion with the tyoed of folate being taken, and other synptoms changes as well in concert with folate changes it is the folate, not the E, which can be subject to all it's own trials and people can tst the hypotheis. Also B2 and B12 can be involved. That's what all these things are non-specific. That's why A-B testing is the only way to establish this for any given person.

Freddd, If I take 800mcg folate or 15x800mcg folate or no folate, I do not get angular chielitis, except if I do not take my E. I also think that if you get it when you take one dose of folate vs another that does not necessarily prove you need more mfolate - it could mean (1) you are taking too much mB12 or (2) you are not taking enough P5P to drain away homocysteine or (3) your diet contains too much junk food or preservatives or (4) your imbalance is causing free radicals and free radicals is what is causing the chielitis. I know I felt very unstable when I tried the high dose mfolate. I had to take more and more mB12, more P5P, more TMG, more everything or I went into symptoms of deficiency (symptoms I did not have when I took the lower doses of everything).

How much E do you take? The miniscule dose in a multi? I read the studies of Dr. William Schutte in the 60's and have been taking 1g/day ever since. It is a blood thinner, and they are now saying that if you take d-alpha w/o gamma-tocopherol it can cause prostate cancer, so I am not saying to take it. I am only asking you to consider for yourself whether you are taking enough antioxidants. I also take 2g C (dunno if it figures in to this). I was not taking my CoQ10 nor alpha lipoic acid so can be sure those don't figure in.

I took only this: 75mg DHEA, 30mg pregnenolone, 2gC, 7g D3, 4 of a 6/day cal/mag - no E: got chielitis. Added the 1g. E (ONLY) and the chielitis went away AT ONCE (took 3 days for the scabs to be replaced by skin). So I had it a total of 3 days if you count the scabbing over and healing.

 

[Freddd]

Freddd, If I take 800mcg folate or 15x800mcg folate or no folate, I do not get angular chielitis, except if I do not take my E. I also think that if you get it when you take one dose of folate vs another that does not necessarily prove you need more mfolate - it could mean (1) you are taking too much mB12 or (2) you are not taking enough P5P to drain away homocysteine or (3) your diet contains too much junk food or preservatives or (4) your imbalance is causing free radicals and free radicals is what is causing the chielitis. I know I felt very unstable when I tried the high dose mfolate. I had to take more and more mB12, more P5P, more TMG, more everything or I went into symptoms of deficiency (symptoms I did not have when I took the lower doses of everything).

How much E do you take? The miniscule dose in a multi? I read the studies of Dr. William Schutte in the 60's and have been taking 1g/day ever since. It is a blood thinner, and they are now saying that if you take d-alpha w/o gamma-tocopherol it can cause prostate cancer, so I am not saying to take it. I am only asking you to consider for yourself whether you are taking enough antioxidants. I also take 2g C (dunno if it figures in to this). I was not taking my CoQ10 nor alpha lipoic acid so can be sure those don't figure in.

I took only this: 75mg DHEA, 30mg pregnenolone, 2gC, 7g D3, 4 of a 6/day cal/mag - no E: got chielitis. Added the 1g. E (ONLY) and the chielitis went away AT ONCE (took 3 days for the scabs to be replaced by skin). So I had it a total of 3 days if you count the scabbing over and healing.

Hi Rydra,

I don't take a multi. I take a supplement with 400iu of D-alpha plus 7 other factors in varying amounts. I have tested for each of several other things. The only thing is folate and I have been through hundreds of cycles, perhaps 50 in the past 2 years since the glutathione which was 8 months continuous. When it comes on in a day with too much folate veggies, or two days with folic acid or 1 day with folinic acid and starts to go away with Metafolin in a day and as long as I manage folate stays gone pretty well, it's folate, as it is with all those who have it come and go with folate as some are finding here. You are barking up a very wrong tree for almost everybody. You may not have paradoxical folate deficiency but others do. And it isn't alone. It comes and goes with IBS, edema and other things in me and other things in others. I'm not just assuming it is folate. Everybody is testing the folate and some others, not everybody with PFD has the cheilitis, just the ones with PFD AND for whom the cheilitis comes and goes with form of folate. It is predictable and repeatable with folate. Get over it.

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

 

[rydra_wong]

HI Rydra,

That may very well be, there are several possiblities. However when it changes in relation with the type of folate being taken, and other synptoms changes as well in concert with folate changes it is the folate, not the E, which can be subject to all it's own trials and people can tst the hypotheis. Also B2 and B12 can be involved. That's what all these things are non-specific. That's why A-B testing is the only way to establish this for any given person.

Hm. I dont think I could apply any realistic test based on what Madie said above - I drink a LOT of milk and eat a LOT of fish - both high in 5-MTHF. So maybe that's why I don't seem to need too much. And maybe that's why I got by when in my younger years I supplemented with folic acid, being unaware of genetics and active B's.

I did want to post the following. If you have low ferritin (as I do and have my entire life bar not one single day) then the MCV reading is meaningless. It will always look like you are not folate deficient (well, that's how I read the study below):

http://www.lef.org/abstracts/codex/iron_abstracts_02.htm
Unanticipated favorable effects of correcting iron deficiency in chronic hemodialysis patients.
Polak VE, Lorch JA, Means RT Jr.
BACKGROUND: Correction of anemia in hemodialysis patients is seldom completely attained, and the response of parameters other than hemoglobin concentration to anemia correction has not been evaluated in detail. METHODS: Laboratory parameters that suggest iron deficiency occurred in 1015% of 206 recombinant human erythropoietin (rhEPO)treated patients. Oral iron was given for 9 months and intravenous iron thereafter on a patientspecific basis when iron deficiency was evident. Eightyseven hemodialysis patients with data for 12 months were followed for another 12 months. A computerized information system enabled data management and analysis. RESULTS: With oral iron, serum ferritin decreased (P < 0.001), indicating further iron depletion. With intravenous iron, hemoglobin increased, evidence of iron deficiency decreased, and less rhEPO was needed. Striking macrocytosis appeared. Serum albumin and serum creatinine/kg body weight (an index of muscle mass) increased, while blood pressure decreased. Data were reanalyzed in four mean corpuscular volume (MCV) quartiles and two ferritin subsets at study onset. Iron deficient erythropoiesis (low MCV, mean corpuscular hemoglobin [MCH], and transferrin saturation) was striking in quartile 1; low ferritin was prevalent in all quartiles. With intravenous iron, hemoglobin increased only in quartile 1, the quartile with the greatest decrease (52%) in rhEPO dose. MCV increased in all quartiles (P < 0.001). Serum albumin increased in all MCV quartiles and both ferritin subsets, but significant creatinine/kg increase and blood pressure decrease occurred only in the lowferritin subset. CONCLUSIONS: Macrocytosis occurred with intravenous iron replacement. The universal MCV increase suggests unrecognized, inadequately treated, folic acid deficiency unmasked by an adequate iron supply. There was also improved well being. Effects were most clearly evident in patients with deficient iron stores. PMID 11288758