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Folate intolerance or deficiency? Suggestions?

PeterPositive

Senior Member
Messages
1,426
I am MTHFR C677T +/+. Recently I started oral Metafolin (800mcg) and haven't seen any improvements or side effects. Then I switched to sublingual methylfolate , same dosage, which has caused extra anxiety but more importantly severe worsening of the GI issues.

I have a hard time thinking that this is some kind of folate intolerance, otherwise I would have seen the same symptoms when taking it orally (I have tried both Quatrefolic and Metafolin, same thing).

At the moment I can barely handle half sublingual tablet (400mcg) which is accompanied by Metyhl-B12 and Adenosyl-B12 (1000mcg in total). I have no problem with both forms of B12 even at higher dosages.

I am suspecting this is an example Paradoxical Folate Deficiency?
If I remember correctly I read Freddd or someone else saying that when folate and B12 re-start the healing process new cells are built more quickly, but if the amount of folate in the system isn't enough to maintain them they will die very rapidly...

Am I making any sense?

My biggest problem has always been functional digestive issues (not IBD, but very strange form of IBS), with sublingual methylfolate the issue is exacerbated pretty quickly, typically 2-3 days. I have done a couple of tests: stopping the supplement I get relief in 24-48 hours. Then I reintroduce it and things worsen in another 48-72 hours.

Besides trying to push through this, is there any advice that I can try?
If this is a paradoxical deficiency and I need say 10x the folate (and B12) to sustain healing how am I going to get there without dying? :( Seriously 400mcg are already killing me.

I will try to stay on this dose for some time and see if it's just a temp issue, but if you guys have had similar experience or have suggestions, please let me know.

Thanks
Peter
 
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Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I am MTHFR C677T +/+. Recently I started oral Metafolin (800mcg) and haven't seen any improvements or side effects. Then I switched to sublingual methylfolate , same dosage, which has caused extra anxiety but more importantly severe worsening of the GI issues.

I have a hard time thinking that this is some kind of folate intolerance, otherwise I would have seen the same symptoms when taking it orally (I have tried both Quatrefolic and Metafolin, same thing).

At the moment I can barely handle half sublingual tablet (400mcg) which is accompanied by Metyhl-B12 and Adenosyl-B12 (1000mcg in total). I have no problem with both forms of B12 even at higher dosages.

I am suspecting this is an example Paradoxical Folate Deficiency?
If I remember correctly I read Freddd or someone else saying that when folate and B12 re-start the healing process new cells are built more quickly, but if the amount of folate in the system isn't enough to maintain them they will die very rapidly...

Am I making any sense?

My biggest problem has always been functional digestive issues (not IBD, but very strange form of IBS), with sublingual methylfolate the issue is exacerbated pretty quickly, typically 2-3 days. I have done a couple of tests: stopping the supplement I get relief in 24-48 hours. Then I reintroduce it and things worsen in another 48-72 hours.

Besides trying to push through this, is there any advice that I can try?
If this is a paradoxical deficiency and I need say 10x the folate (and B12) to sustain healing how am I going to get there without dying? :( Seriously 400mcg are already killing me.

I will try to stay on this dose for some time and see if it's just a temp issue, but if you guys have had similar experience or have suggestions, please let me know.

Thanks
Peter

Hi Peter,

First let's clarify, there is no need to increase MeCbl at this point. It is purely a Metafolin problem. It sounds like you had poor oral absorption. If you increase the folate, the symptoms should improve (go away or lessen) as you increase the dose. That is what demonstrates that it is donut hole folate deficiency. It does this on different levels. So for example, a whole layer gets turned on to healing out of maybe 7. Perhaps all the body's foliate is then directed to that one which started healing thereby depriving other layers. As you add Metafolin, a deficient layer ceases to be deficient. Usually it is the epithelial layer that suffers the most, the lining of the digestive system, lungs, the skin, bladder, urethra, mouth, fingers etc. That it starts about 3 days after is one of the tipoffs. The other is low potassium symptoms. Those can be dangerous and get worse if potassium is not taken.. See below.

Version 1.2 12/08/2013

Group 1 – Hypokalemia onset. 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

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


Group 2a - Both

IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation


Group 2b – Either or both

Headache, Increased malaise, Fatigue



Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency

These symptoms appear in 2 forms generally, the milder symptoms that start with partial methylation block and the more severe symptoms that come on as partial methylation block gets worse or very quickly with methyltrap onset.

Edema - An additional thing I would like to mention. I would never have found it without 5 years of watching the onset of paradoxical folate insufficiency and trying to catch it earlier and earlier and to figure out what was causing it and to reverse it. For me the onset order goes back to the day of onset now with edema and a sudden increase of weight. I noticed that within 2 hours of taking sufficient Metafolin I would have an increase in urine output.


Old symptoms returning

Edema

Angular Cheilitis, Canker sores,

Skin rashes, increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips,

Increased hypersensitive responses, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms

IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract,

Coated tongue, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Increase irritability, Heart palpitations,


Longer term, very serious

Loss of reflexes, Fevers, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, bleeding easily




Group 4 - HyCbl onset, degraded MeCbl onset, MeCbl after photolytic breakdown onset.

Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.
 

PeterPositive

Senior Member
Messages
1,426
Thanks Freddd.
I have read many comments from people taking large doses of methylfolate such as Deplin and similar products. It seems that side effects are relatively minor, if any at all. Very few people reported problems and stopped the therapy, while the majority had some kind of benefit and even major improvements.

Do you think this is representative of the incidence of hypokalemia? In other words it doesn't seem to be prevalent according to those reports. Naturally it's very good to know about it and be prepared to recognize it and do something about it.

Also, since I always have an upset stomach, is potassium easier on the digestion with meals or on empty stomach?

Thanks again
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thanks Freddd.
I have read many comments from people taking large doses of methylfolate such as Deplin and similar products. It seems that side effects are relatively minor, if any at all. Very few people reported problems and stopped the therapy, while the majority had some kind of benefit and even major improvements.

Do you think this is representative of the incidence of hypokalemia? In other words it doesn't seem to be prevalent according to those reports. Naturally it's very good to know about it and be prepared to recognize it and do something about it.

Also, since I always have an upset stomach, is potassium easier on the digestion with meals or on empty stomach?

Thanks again

I think hypokalemia is common in people taking MeCbl AND Methylfolate starting up methylation that was deferring a lot of healing. It is almost universal in this group with years to decades of broken methylation.
 

PeterPositive

Senior Member
Messages
1,426
Peter, I now take my K+ in footbaths. I don't need any more than by taking it orally. Much easier on stomach. ahmo
Ah, interesting. I did that with magnesium years ago when I already could not tolerate much oral magnesium. Lo and behold I couldn't even tolerate it via foot baths :(

Do you have any specific recommendations on how to use K+ this way? How much potassium do you use in how much water, approximately? Also for how long?

When I was experimenting with Mg I noticed that 5 minutes were my safe limit after which I would start getting adverse reactions. To this day I have no idea why transdermal Mg was able to upset my intestine anyways... but I have done the test so many times that I can't dismiss the patent evidence.

cheers
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I have used minerals in a foot bath with the ReBuilder for helping activate the nerves. I have found it effective but it got loaned out and never returned. When I can afford one I'll get another. They said that it helps activate ion channels in the nerves.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
I use a plastic dish-washing basin, about 1 qt. warm water. The amt of K+ varies as my needs do. Typically, 1 tsp K+ Gluconate AM, 1.5 tsp PM. But when I increase folate, or am detoxxing, I can use up to 2 Tb. Generally I soak 15-20". I also do this w/ mg oil, which I've been making. I've needed a lot of mg oil, I'm just switching to Mg citrate in footbagths instead. I'm also waiting for my K chloride, as Freddd mentioned elsewhere, to see if it turns out to be more economical.

I'm interested to see that even transdermal affected your intestines so strongly. I've been taking all my powdered supps by footbaths for several months, very effectively. I also empty my Z, Se, Mang caps in. In my recent coffee enema marathon (4 days on, 2 days off...) I've begun adding GABA, glycine, glutamine, Vit C, Ca, mg citrate, K+, Z, Mang, Se to final clear water rinse. This has radically reduced my feelings of spaciness, irritability afterwards.
 

Critterina

Senior Member
Messages
1,238
Location
Arizona, USA
I am MTHFR C677T +/+. Recently I started oral Metafolin (800mcg) and haven't seen any improvements or side effects. Then I switched to sublingual methylfolate , same dosage, which has caused extra anxiety but more importantly severe worsening of the GI issues.
Peter,

That link is not to sublingual methylfolate (b9), but to methylcobalamin (b12). If you substituted that for your methylfolate, that might explain something. Please check back with what it really is you're taking. If you swapped out all your methylfolate for mb12...I hate to think of it.

What clued me in was that I've never heard of methylfolate being sublingual, so I followed your link.

I hope you're not powering through this, if it's a mistake!
 
Messages
46
How much can I increase the Methylfolate at a time if I think I have the paradoxical folate deficiency? I took 2 mg today but still a lot of symptoms, particularly skin (acne, peeling skin around nose and fingers), headaches and fatigue, inflammation. I have 1 mg capsules, but wondering if I need to increase by less at a time? Does increasing potassium help, or is that a separate issue? Thanks for the help.
 
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Messages
9
Please share your opinion on the work of Carl Pfeiffer, William Walsh, Mensah Medical, and Samantha Gilbert who in my understanding believe high histamine people are under-methylated and have folate intolerance/sensitivity. I also would appreciate a recommendation for oxidative stress, etc. testing. Genetically, some of my issues are +/+ for all BHMT listed (2,4, and 8), +/- for CBS C699T, +/- for MTHFR A1298C. Thank-you!
 
Messages
9
Folate sensitivity references: William Walsh http://www.alternativementalhealth.com/commentary-on-nutritional-treatment-of-mental-disorders-2/. Carl Pfeiffer http://www.orthomolecular.org/library/jom/1999/articles/1999-v14n01-p028.shtml. SamiG http://samanthagilbert.com/genetics-lab-testing-sorting-hype/. Reference to Mensah Medical http://www.firstnopharm.com/2014/bad-mthfr/. "Folate essentially exacerbates undermethylation problems and is likely why some people actually get worse when methylfolate (or any folate, including dietary folate like in kale) is added."
 
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Messages
4
Location
Brisbane
PeterPositive I would be really interested to hear how you are doing with this now? I am in the same situation .... not tolerating low dose Mfolate and scared to take high dose ... and causing severe stomach and gut problems. I really dont know how to proceed. I am taking 1mg Methyl M12 daily with no problems and lwo dose B-complex with no problems ... but even just 100mcg Mfolate makes me sick.... so scared to try higher dose .... what to do?? hmmm
 
Messages
9
Based on William Walsh's research since I am a high histamine low methylator person I am further reducing dietary folate and am so glad I quit folate supplements 6+ months ago. I don't know my intracellular levels but my blood folate was as high as Debbie McQueen's twice since 2011. www.mthfrheds.com/ "After restricting folic acid (Lisa's note - I believe any folate) intake, my blood folate level dropped to below normal range. In sync, my pain and disability dramatically improved despite the lingering intracellular deficiency. This suggests the symptoms that improved or resolved were related to accumulation of folate in the blood rather than the folate deficiency."
 
Messages
4
Location
Brisbane
Anyone have suggestions about how to increase potassium without it causing gastritis. I am only taking a small amount and I need more ... but my stomach is BURNING!!!!
 

aaron_c

Senior Member
Messages
691
Anyone have suggestions about how to increase potassium without it causing gastritis. I am only taking a small amount and I need more ... but my stomach is BURNING!!!!

I find that taking potassium with extra water fixes the problem.