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Help Troubleshooting? Can't break folate insufficiency

Messages
67
Location
New Zealand
I'm up to 40mg a day of methylfolate taken SUBLINGUALLY and still have insufficiency signs, not to mention a dreadfully shrinking bank balance. The 7 lbs of water weight that I put on when I started the protocol went away for a few days, but has come roaring back. My face is covered with pimples like it hasn't been in decades. I tried reducing my folate dose the other day and spent the day in bed with flu-like symptoms. I've also got sores in my scalp, although they seem to be going away now.

I'm using a combination of Thorne 5mg capsules with the contents absorbed under my tongue and Solgar Metafolin tabs, also sublingually absorbed. I can't take all of it in Solgar at this dosage as my body doesn't do well with all the sugar alcohols that they use to sweeten it (induces vomiting at too high a dose for me). I'm currently spreading the amount across 5 doses a day. I'm careful to keep these doses away from taking potassium by at least 30 minutes before and after.

Folate rich fruit/veg I've been avoiding completely for a couple of weeks. (Ugh)

Other B vitamins I'm only taking in VERY small doses in the Nature Made B-Complex with C. Even with that I'm breaking the tablet into two doses, just in case. Dosage at link, but they really are small! No folic acid or B12 of any kind in that.

Other supplements:

B12 Oil Methyl and Ad version 2 pumps/day
Jarrow ALCAR 1176mg (2 doses at 588mg)
Carlson's Super Omega 3 1000mg (2 doses at 500mg)
Jarrow Ubiquire CoQ10 100mg
Magnesium Glycinate 400mg (2 doses at 200mg)
Magnesium Chloride spray (1-2 times day)
Silica 500mg
Life Extension Only Trace minerals

Homemade electrolyte/mineral drink sipped through day containing:
Filtered water/water kefir base
Zinc drops 5mg
Sea Salt 1/2 teaspoon
Selenium 200mcg
Lugol's Iodine 2 drops
D-Ribose 5g
Creatine 5g
Vitamin C 1 tsp

Potassium as Chloride or Gluconate (can tolerate now) 2-4 g per day. I seemed to initially have a bad reaction to the gluconate, but after a second trial, I handle it fine.

Also note that I tried LCF and it did nothing for me. I'm getting a noticeable response from the ALCAR. Also, I've got Sam-E and TMG in the house, but am trying to stabilize on the Deadlock Quartet before adding them in.

I think I've gone through one bout of mini-healing. A few weeks in, I definitely saw improvement in symptoms and energy level, then after only a few days of that, the water weight came back and the fatigue returned with a vengeance. Fatigue reduced after switching to ALCAR from LCF, but still not as good as it was.

Anything that you can see that could be tweaked, removed, added, etc? This much folate costs the earth. especially in New Zealand dollars...
 
Messages
88
Location
Oxfordshire, UK
Am not best placed to advise, unfortunately, as I have been "in decline" since July now and getting worse. But I do think that I and probably many others have a tendency to take too many things at once before we have waited to measure response, and also take too much of somethings. Is there a "good point" that you can rewind to? I am incredibly sensitive to supplements- and to foods and water now- but know when I have a better day I then try to boost something else by taking another supplement. Our poor livers have to work hard to deal with all these , plus they are already below perfect as shown by need to aid methylation.

What sort of bad reaction to potassium glutamate did you have.? I am needing potassium but struggling to find a type that I can tolerate. HOw did you manage to then be able to take it?Have ordered potassium orotate to try....

Good luck

Mels
 
Messages
67
Location
New Zealand
Am not best placed to advise, unfortunately, as I have been "in decline" since July now and getting worse. But I do think that I and probably many others have a tendency to take too many things at once before we have waited to measure response, and also take too much of somethings. Is there a "good point" that you can rewind to? I am incredibly sensitive to supplements- and to foods and water now- but know when I have a better day I then try to boost something else by taking another supplement. Our poor livers have to work hard to deal with all these , plus they are already below perfect as shown by need to aid methylation.

What sort of bad reaction to potassium glutamate did you have.? I am needing potassium but struggling to find a type that I can tolerate. HOw did you manage to then be able to take it?Have ordered potassium orotate to try....
No, there isn't a good point ot rewind to, unfortunately. As I said, I tried dropping the folate back and things only got worse.

I THOUGHT I had a bad reaction to K Gluconate (vomiting) the first time I tried it but that may have just been coincidence. I get a lot of migraines and it may have just been a regular old one of those making me heave.
 

adreno

PR activist
Messages
4,841
I don't know where you got the idea that you have folate deficiency. 40mg is an insane dose, and will deplete other essential B vitamins.
 
Messages
67
Location
New Zealand
I don't know where you got the idea that you have folate deficiency.

That would be all the symptoms I have that are straight out of Fredd's "folate insufficiency" list. See below. I've got a laundry list of them that have appeared SINCE starting the protocol.

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
 
Messages
15,786
That would be all the symptoms I have that are straight out of Fredd's "folate insufficiency" list. See below. I've got a laundry list of them that have appeared SINCE starting the protocol.
Everyone has a lot of symptoms on Freddd's list, because the list includes most symptoms of every disease imaginable. Freddd is not a doctor, and you should not use his list to diagnose a folate deficiency.

At the very least get a blood test before doing anything extreme without a doctor's active involvement!
 
Messages
67
Location
New Zealand
Right, that should tell you something, shouldn't it?

Absolutely. It tells me that I'm passing through the same symptoms that many others have going through the same protocol as I've seen mentioned again and again on the forum. Rather like a valid protocol, I'd say, what with repeatable reactions to stimuli across a population.
 
Messages
38
Location
Chicago, IL
@Gyre I'm interested to see what you discover in this because I'm having a very similar experience with less severity (and I'm still beginning so my doses are much lower). For me it went swollen throat (which lessoned when I increased folate), then acne, then canker sores, then nose peeling.

However, I'm feeling better than I think I've ever felt, and had been getting the most amazing sleep until last night when I seemed to come back to being restless and not sleeping deeply. The MeCbl brought the positive change in my sleep as soon as I started taking it, so I'm going to take more folate in the morning and then taper off to see if that helps.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@Gyre Are you eating green veggies? When I got to 25mg Mfolate and continued deficiency symptoms, I was also developing signs and symptoms of adrenal stress. I quit the green veggies, and the folate dose dropped from 25 to 15mg. For some of us, veg folate (folinic) blocks Mfolate. I've tried small amounts of green veg, but even that doesn't work for me. Beware, when I first realized this and stopped the veggies, I was spun into a hyper-methyl response. I was in the midst of detoxxing, and that galloped off. So be prepared for some sort of response, maybe extra B12 can help. cheers, good luck.
 
Messages
67
Location
New Zealand
@ahmo, Nope, no high folate veggies, anyway. Had the odd small bit of iceberg lettuce and small amounts of zucchini, with folate taken right before eating as Freddd suggested but maybe even that small amount of veg is too much for me. *sigh* I guess I need to drop those too.

I have added an extra dose of B12 oil (straight methyl) at night. I get crazy dry eyes if I don't have that extra dose right now.

What sort of adrenal stress signs were you getting?

I've dropped my dose down to 30mg/day as it seems to make no difference in deficiency symptoms from 40mg. I find I don't have any energy at all if I drop below the 30.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@Gyre, I thought I was eating a small amount of zucchini..but it had become 2 med-small zukes/day. Stopping them is what made such a huge difference. I think I was also still using lettuce in my juice at that time, about 4 leaves. No longer use either of those.:meh:
My adrenal stress first showed up in puffy face, eyes overflowing/tearing for no reason, dark/red circles under eyes, flakey skin above and below eyes. Then progresses to low back pain. Sorry I don't have any other bright ideas for you:rolleyes:. Happy Hols:balloons:
 
Messages
67
Location
New Zealand
@ahmo Thanks. Will do the deed. I've only been eating about half of a small zuke every few days, but with the lettuce and strawberries in my diet as well, I may just be over doing it. No idea what the rellies are serving tomorrow, but after that I'm in charge again.

Do you have suggestions of veggies you've found that are low folate and you tolerate? For some crazy reason, it isn't easy to find a list of LOW folate veg!

Don't seem to have similar adrenal issues as you did at least. My face is puffy, but then all of me is puffy since I started the protocol and hit the oedema stage of folate insufficiency. Ugh. None of my summer clothes fit well.

Happy Hols to you too!
 
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ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
The only veg I'm eating is carrots. Everything else, if not folate, has/creates histamine or sulfur, so I'm stuck for now.:grumpy: I'm hoping maybe my next level of gut clearing will shift things. Bummer about the clothes:meh: My wardrobe's pretty tolerant of fluctuations:lol:

Oh yes, I also have a collection of mast cell symptoms that become active when adrenals are stressed, and tinnitus.

Here are a few sites that might help with nutrient contents:
http://foodinfo.us/SourcesUnabridged.aspx?Nutr_No=435

http://www.whfoods.com/genpage.php?tname=foodspice&dbid=21

http://nutritiondata.self.com/facts/vegetables-and-vegetable-products/2639/2#Foods
 
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Messages
67
Location
New Zealand
@ahmo I tried the whole low histamine diet thing for six months and it did nothing for my mast cell issues. Did make me grumpy though, what with so many flavourful foods removed. Going low FODMAP helped more, don't know if you've tried that.

In general, my mast cell stuff has improved on methylation. I still get a red mark if I scratch my skin, but it doesn't progress into a full raised hive like it used to do.

My clothes are generally tolerant of fluctuations, but there IS an upper limit that the extra 7kg of water weight I've accumulated since starting methylation is really pushing. Ugh. SO puffy.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Ugh. SO puffy.:(:hug:
k11799839.jpg
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
@Gyre Are you eating green veggies? When I got to 25mg Mfolate and continued deficiency symptoms, I was also developing signs and symptoms of adrenal stress. I quit the green veggies, and the folate dose dropped from 25 to 15mg. For some of us, veg folate (folinic) blocks Mfolate. I've tried small amounts of green veg, but even that doesn't work for me. Beware, when I first realized this and stopped the veggies, I was spun into a hyper-methyl response. I was in the midst of detoxxing, and that galloped off. So be prepared for some sort of response, maybe extra B12 can help. cheers, good luck.

Hi again @ahmo. I'm not saying you or Fred or anyone is wrong on this, but looking at the list of foods with the highest levels of folate, they're also the highest in fiber. Not to mention lectins, saponins, oxalates, etc.

I'm just wondering if more methylfolate was required when you were eating those foods, not only because of the extra energy it would require to break down and digest them, but because of the 'wear and tear' the fiber would put on the digestive tract, which would then need more m-folate to repair and rebuild?

Or, do you have the MTHFS mutation?
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
@ahmo
In general, my mast cell stuff has improved on methylation. I still get a red mark if I scratch my skin, but it doesn't progress into a full raised hive like it used to do.

My clothes are generally tolerant of fluctuations, but there IS an upper limit that the extra 7kg of water weight I've accumulated since starting methylation is really pushing. Ugh. SO puffy.

That's really interesting @Gyre. You've gained water weight -- edema? -- from methylation? Wouldn't that mean worsening kidney function?