High Dosage methylfolate users

[ahmo]

No, no Deplin in Aus.

 

[mgd1972]

@place: what time in the afternoon? You don't find that the afternoon dose affects your sleep?

I took an extra capsule (500mg) this morning but in the past it stimulated me so I'm leery of taking any of it past about noon or so.

Afternoon dose of what? I'm finding this thread very interesting as I'm trying to figure out the right amounts of folate to mb12, etc. I find it hard to a) take the same amounts consistently every day and b) remember how much I'm taking! Roughly I'm at 5-10 mg of mb12 and 10 mg adb12 with 15-20 mg folate, potassium as required. Can't seem to completely shake the acne, peeling skin and other deficiency symptoms, although I was out of folate for a couple of weeks so maybe I'm just getting the folate levels back up. I think my skin is better than it was since restarting the folate. I put the folate under my lip or chew on the capsule to try to absorb it better as @stridor suggests. That stuff is expensive!

@ahmo I'm very interested by your comments on the histamine symptoms indicating the need for more b12. I had a sudden histamine headache this afternoon and was tying to figure out the cause. Thanks for the tip! Can anyone, @whodathunkit perhaps, explain the connection between histamine and methylation? I'm confused because I seem to have symptoms of both too much folate (histamine reaction) and not enough (skin issues). Maybe I'm just at the turning point between not enough and too much, if that makes any sense. Or maybe something else is going on. Does low potassium also cause headaches behind the eye (cluster like headaches that I associate with histamine response)?

 

[ahmo]

@mgd1972

I find it hard to a) take the same amounts consistently every day and b) remember how much I'm taking!

You need a notebook to keep track of dosages and symptoms.

Roughly I'm at 5-10 mg of mb12 and 10 mg adb12 with 15-20 mg folate, potassium as required. Can't seem to completely shake the acne, peeling skin and other deficiency symptoms,

If you in fact mean mg, and haven't mistakenly written mg instead of mcg, you're indeed at a high level of folate. If this is the case, you might be running into the same problem I discovered, that your vegetable intake, which is in folinic form, is blocking the folate, leading you to need ever-increasing doses. When I stopped the veggie, I cut my dose from 25mg to 15mg Mfolate. (I take mine orally, don't know if holding it in mouth helps...)

I think the histamine issue arises because the folate pushes the methylation cycle faster; caledonia has explained this, maybe earlier in this thread. Low potassium could cause headache, so could high histamine.

And it could be you need more MB12...can only work this out by trial and error. You might be able to decrease the AdB12. And yes, it's expensive. From my search, it seems it's wildly more expensive to use the Rx form of Deplin. .

 

[mgd1972]

@mgd1972
You need a notebook to keep track of dosages and symptoms.


If you in fact mean mg, and haven't mistakenly written mg instead of mcg, you're indeed at a high level of folate. If this is the case, you might be running into the same problem I discovered, that your vegetable intake, which is in folinic form, is blocking the folate, leading you to need ever-increasing doses. When I stopped the veggie, I cut my dose from 25mg to 15mg Mfolate. (I take mine orally, don't know if holding it in mouth helps...)

I think the histamine issue arises because the folate pushes the methylation cycle faster; caledonia has explained this, maybe earlier in this thread. Low potassium could cause headache, so could high histamine.

And it could be you need more MB12...can only work this out by trial and error. You might be able to decrease the AdB12. And yes, it's expensive. From my search, it seems it's wildly more expensive to use the Rx form of Deplin. .

Thanks for your reply. I do mean mg. I thought Freddd suggested recently to try a 1:1 ratio of mg to adb12? I will try cutting back on adb12. What effect should that have?

I will try to cut back on the veggies, slowly....which ones are the worst offenders in your experience? Are orange veg okay? Is fruit okay? I eat a lot of meat, eggs and cheese already! I've been following the gaps diet for a year and a half, although I don't religiously eat all of the fermented foods and bone broth that I should, nor do I do all of the recommended detox measures. I find it exhausting to do everything I should on top of getting back to work part time, which I enjoy for the most part, and having a busy young family, which I also enjoy for the most part! I'm wondering if I need to avoid high histamine foods too, but then I looked at a list of histamine sensitivity symptoms and a lot of mine are for low histamine levels, although some can be both. This is when I start to give up trying to figure things out and get discouraged. I helps to hear the success stories and helpful advice from people like you!

I also feel like alot of my FMS and CFS type symptoms sound a lot like folate deficiency symptoms, so I'm not sure if it is folinic acid metabolism or a very deep folate deficiency. I find the trial and error thing difficult, and I can't seem to stick to the notebook thing. I've tried many times. There are just so many variables - diet, supplements, weather, mood, stress, hormones, how busy I've been (which increases without me noticing as I feel a bit better, and then I have a bad day out of the blue....then I wonder is it the folate or potassium or the kale or have I been pushing myself too hard?).

I've had a lot of problems with sinuses for years and I'm wondering now if I've had histamine sensitivity all along. That's why I'm curious about the link between histamine and methylation. I'm fairly sure what I had today (and often have) is a histamine or cluster headache, behind one eye and radiating out from there. It comes and goes. I took extra potassium to see if that is what it is, nothing so far. I'll try a b12 in a bit and see. Also a lot of my food sensitivities turn up on the high histamine list.

Thanks for the help. Much appreciated.

 

[ahmo]

Green veg are the big folate contributors.

Here are some histamine resources ...for your spare time!

http://roosclues.blogspot.com.au/2010/03/overview-of-high-histamine-also-called.html

The Many Faces of Histamine Intolerance http://healthypixels.com/?p=1044
http://peelingbacktheonionlayers.com/could-histamine-be-sabotaging-your-digestive-health/

http://aminerecipes.com/low-amine-grocery-list/

http://thelowhistaminechef.com/


Histamine food list http://forums.phoenixrising.me/index.php?attachments/allowed-restricted-foods-pdf.6408/

 

[mgd1972]

I've been wondering about histamine for some time....a dietician raised it as a possibility about a year ago, but I am already on a pretty restrictive diet with GAPS so didn't want to go there. I'm starting to think after reading more tonight (thanks for the links @ahmo) that I need to give a low histamine diet a try. The difficulty is, a lot of the low histamine foods are high in folate! Do I restrict myself to only what I can tolerate with no high histamine or low folate symptoms, or continue healing my gut and following the b12 protocol? I'm so confused at this point. Does anyone else seem to be both sensitive to histamines and unable to tolerate folinic acid? I also don't seem to tolerate sulfur, although sulphites (my main issue) are also on the list for histamines so maybe sulphur isn't the problem.

 

[ahmo]

I'm 2.5 years on GAPS diet. I have a very limited diet, w/ no histamine or sulfur foods. I use probiotics rather than fermented foods. I'd settled on zucchini as my green veg, until I had to eliminate it. I drink lettuce/carrot juice. I've been healing on this limited diet, especially thanks to Freddd's Protocol. But just in the last week I've had to eliminate some of the foods I'd added because of discovering a gluten cross-reactive reaction.

I've just leaned about low dose Naltrexone, LDN, which helps w/ auto-immune disorders. I'm hopeful this might change things, am in the process of getting some.

I'd like to think I'll be able to add in these foods sometime, but I'm frankly not very hopeful. At least not histamine, for which my MAO++ indicates a significant problem. Someone in GAPS forum keeps telling me NCM says once our guts are healed we can resume these foods, but I'm not so sure that applies to all of us. My relationship to food has totally changed. I enjoy every one of the minimal meals I eat, but no longer think about what I'd like to eat. In the scheme of things, I feel *fortunate* that ME/CFS pushed me into reclusiveness, that I have no social eating. I feel like the harbinger of doom. 2nd time today I've felt this. I can only counter that by adding that in most ways I'm healthier than I've been throughout my life.

 

[mgd1972]

I'm 2.5 years on GAPS diet. I have a very limited diet, w/ no histamine or sulfur foods. I use probiotics rather than fermented foods. I'd settled on zucchini as my green veg, until I had to eliminate it. I drink lettuce/carrot juice. I've been healing on this limited diet, especially thanks to Freddd's Protocol. But just in the last week I've had to eliminate some of the foods I'd added because of discovering a gluten cross-reactive reaction.

I've just leaned about low dose Naltrexone, LDN, which helps w/ auto-immune disorders. I'm hopeful this might change things, am in the process of getting some.

I'd like to think I'll be able to add in these foods sometime, but I'm frankly not very hopeful. At least not histamine, for which my MAO++ indicates a significant problem. Someone in GAPS forum keeps telling me NCM says once our guts are healed we can resume these foods, but I'm not so sure that applies to all of us. My relationship to food has totally changed. I enjoy every one of the minimal meals I eat, but no longer think about what I'd like to eat. In the scheme of things, I feel *fortunate* that ME/CFS pushed me into reclusiveness, that I have no social eating. I feel like the harbinger of doom. 2nd time today I've felt this. I can only counter that by adding that in most ways I'm healthier than I've been throughout my life.

Can you tell me a bit more about what you eat, I.e. typical breakfast, lunch, dinner? I'd be willing to give it a trial to see how I feel. I never thought I could manage GAPS but I love it now; really helps my digestion.

I thought lettuce was a no no because of folate?

 

[ahmo]

"Typical"...They're all the same I'm eating only twice a day, leaving me a big break that's semi-fasting so body can do rejuvinating things instead of digesting. I'm home-bound and sedentary mostly, so this works for me. I used to eat about a palm-sized portion of meat, now eat 1/2 that at each meal. approx 2 Tb fat, 1 tsp ghee, 2 cups broth. In my PM meal I add the carrots left from my juice, approx 1 med carrot.

I've just eliminated the buckwheat I'd added a few months ago, due to gluten cross-reactivity. I've also just started shifting my limited amts of beans and mushrooms to midday, with a probiotic, as resistant starch. 1 Tb beans every other day, tiny amt of Shitaki mushroom, hopefully every other day, just resuming. GTried more beans, more frequently, but too much sulfur.

Re lettuce, yes, it's folate. I don't use much. there's nothing else I can use to get fresh juice.

I use beef, lamb, chicken, pork. They've been cooked in water, giving me the broth, the beef and pork as roasts, lamb as neck. I freeze them in meal-size portions so that I can take them out prior to each meal, not have them in frig making histamines. I also render fat, pour it into muffin tins, 1/3 cup each. Freeze these. Initially I used 1 whole block/meal. Now that I'm not in intense healing, using 1/2.

Inspiring, no

 

[acrosstheveil]

From what I've read there can be many reasons that people can't tolerate methylfolate. Intolerance could be caused by any one of a variety of mutations causing a variety of problems (like high dopamine, high histamine, high ammonia, other inflammatory issues, etc.) or it could be caused by a need to detox so that symptoms from increasing metabolism (methylation) aren't so unpleasant. Detox could include heavy metal detox, general liver detox, etc.

Complicating this is the fact that various nutrient deficiencies or imbalances can also cause intolerance. Imbalance of B vitamins, not enough zinc, not enough or too much molybdenum or manganese can cause problems, etc. Genetic mutations can also cause problems with the other nutrients needed for successful methylation and to utilize methylfolate correctly.

BUT...once those issues are addressed properly (whatever they are), methylfolate pretty much works the same for everyone.

It's figuring out what your issues are and how to address them properly that's the problem.

That's just my understanding. I hope someone with more knowledge will correct me if I'm wrong.

how would you address a COMT mutation that is causing overstimulation due to increasing methylfolate? I believe that has been a roadblock for me for a long time and i have been unable to get past it.

 

[acrosstheveil]

@Kim C
I had no idea for 10 years of ME/CFS that tinnitus is an adrenal symptom. Mine decreased with each step of my progress, from a high point when I could barely attend to conversations. When I recently cleared my adrenals I woke up to Silence! In the last weeks I have a low hiss that comes and goes according to how my adrenals are feeling. Today, the hiss + a few other returned symptoms have told me it's time for coffee enema to clear my liver

Glad the pyroluria info is helpful. I'm currently taking only 50mg zinc picolinate, 33mg P5P (Nutricology). Initially I took 200mg zinc, in divided doses. This was in part to help detox other metals. Immediately after my recent dumping of toxins I self-tested for a handful of zinc caps, about 10, also selenium. I interpret this to have been replacing the toxins in the critical pathways, as outlined by Klinghardt. Toxic metals insert themselves into places that should have zinc.

Yes, zinc is, fortunately, inexpensive. My understanding, particularly from Freddd, is that there is at least a year of rehabilitation following initial healing of methylation pathway. I expect to need high folate and B12 for at least that long. My genetic profile specifically notes a need for extra B12, tho I don't know of a specific reference to folate. I'd love to be able to decrease my dosage, but do not know if that's going to happen. When I asked my GP if there was any folate by rx here, he told me there was rx folic acid So...as long as I can afford my supps, my quality of life continues to improve. Best to you, ahmo

i think i have adrenal issues as well as horrible tinnitus. How did you clear your adrenals? increasing methylation or adding specific nutrients?

 

[ahmo]

Clearing my adrenals was the *final* phase of a year long detox. Which coincided w/ a year of getting methylation functioning w/ Freddd's Protocol. I'm very interested in understanding more about adrenals now, but still have limited knowledge. From what I know the route to addressing adrenals is through clearing liver. Eliminating toxins is helping both liver and adrenals. I used a number of things to aid my detox, but relied heavily, especially over last 5 months, on coffee enemas, which is wonderful for assisting liver.

These are some links I've collected if you want to go further into it.
http://www.medhelp.org/posts/Adrenal-Insufficiency/Low-potassium-or-high-potassium/show/1082868

http://www.drlwilson.com/Articles/Adrenal 192.htm
http://www.womentowomen.com/adrenal-health-2/eating-to-support-your-adrenal-glands-2/

http://www.pointofreturn.com/adrenal_fatigue.html

http://mthfr.net/forums/topic/protocol-with-adrenal-fatigue/

 

[acrosstheveil]

thanks for the links. I've tried all that stuff and more with limited improvement so I am coming back again to methylation..

how does a person get to the high does of methylfolate with a COMT mutation? It seems like I get ovferstimulated so easily that I have never made it above 2mg of methylfolate a day without severe side effects.

 

[sueami]

thanks for the links. I've tried all that stuff and more with limited improvement so I am coming back again to methylation..

how does a person get to the high does of methylfolate with a COMT mutation? It seems like I get ovferstimulated so easily that I have never made it above 2mg of methylfolate a day without severe side effects.

What is your MTRR and MTR status? I have hetero mutations on 2 of my 3 COMTs and I am hetero or homozygous on all my MTRRs and MTR. I was having trouble with anxiety too -- working my methylfolate up to 4 g a day was making me miserable.

My physician had me back way down on the Mfolate and try 1mg MB12 shots every other day. I'm about a week into the protocol and have a HUGE improvement in energy and neurotransmitter issues, though it's a bit uneven.

My good days are so much better than when I was trying to titrate up mb12, adb12 and folate without the shots, and when I feel badly, it's milder and the wiredness isn't as bad so I can actually nap.

I was also probably overestimating how much sublingual b12 I was actually absorbing and taking too much folate.

Depending on your MTRR and MTR snps, you may be severely lacking in methyl groups also. I have one hetero CBS mutation so I'm not supposed to take SAMe, which is the simple work around for MTRR and MTR mutations. The B-12 shots seem to be working very well for me right now, though it's still early days.

fwiw,

Sue

 

[ahmo]

@sueami This is great news. Congrats

 

[mgd1972]

"Typical"...They're all the same I'm eating only twice a day, leaving me a big break that's semi-fasting so body can do rejuvinating things instead of digesting. I'm home-bound and sedentary mostly, so this works for me. I used to eat about a palm-sized portion of meat, now eat 1/2 that at each meal. approx 2 Tb fat, 1 tsp ghee, 2 cups broth. In my PM meal I add the carrots left from my juice, approx 1 med carrot.

I've just eliminated the buckwheat I'd added a few months ago, due to gluten cross-reactivity. I've also just started shifting my limited amts of beans and mushrooms to midday, with a probiotic, as resistant starch. 1 Tb beans every other day, tiny amt of Shitaki mushroom, hopefully every other day, just resuming. GTried more beans, more frequently, but too much sulfur.

Re lettuce, yes, it's folate. I don't use much. there's nothing else I can use to get fresh juice.

I use beef, lamb, chicken, pork. They've been cooked in water, giving me the broth, the beef and pork as roasts, lamb as neck. I freeze them in meal-size portions so that I can take them out prior to each meal, not have them in frig making histamines. I also render fat, pour it into muffin tins, 1/3 cup each. Freeze these. Initially I used 1 whole block/meal. Now that I'm not in intense healing, using 1/2.

Inspiring, no

Wow, my diet doesn't seem so restricted in comparison. I had buckwheat porridge for the first time this morning....a nice change from my usual yogurt, berries and seeds with coconut. So far so good.

Good tip re the freezng.

 

[sregan]

Depending on your MTRR and MTR snps, you may be severely lacking in methyl groups also. I have one hetero CBS mutation so I'm not supposed to take SAMe, which is the simple work around for MTRR and MTR mutations. The B-12 shots seem to be working very well for me right now, though it's still early days.

@sueami

Sue, I was just looking into this as possibly why I didn't respond well to SMP the first couple of times after an initial very encouraging startup. I have +/+ for MTRR A66G & MTRR A664A (slowing down the recycle of B12) and a +/- for MTR A2756G (speeding up the use of B12). I'm assuming that means I probably need much more MB12 per Mfolate instead of equal doses that I was taking. The last time it was taking only MB12 (and not Mfolate) that slowly pulled me out of the funk. I assumed my feeling bad was due to detox because of my CBS 699T +/- but now wondering.

From: http://www.snpedia.com/index.php/Rs1802059:
"MTRR turns the B12 back into the useful form so that the molecule of MTR can keep working. The MTRR mutations make this enzyme less active, suggesting a need for more B12."


From: http://www.heartfixer.com/AMRI-Nutrigenomics.htm:
MTRR generates the methyl-B12 needed by MTR and many other methyl-B12 requiring enzymes. Blood B-12 levels may be normal, but if MTRR is (+/+) or (+/-), methyl-B12 formation will be compromised, homocysteine levels will be elevated, methylation in general will be compromised, and your physiology will be compromised.

This combination leads to a double whammy on methyl-B12. You can’t make much because MTRR is not functioning well, and any B12 that you do make gets sucked up by the overactive MTR. Here the need to supplement with methyl-B12 (or to help you make it on your own) is greatest

The MTR A2756G defect is an up regulation. The enzyme is always on, grabbing every homocysteine and 5-methyl folate molecule that it can get its hands on, processing them to methionine and THF. Methyl-B12 is required for normal function of MTR, and with each spin of the MTR enzyme, one molecule of methyl-B12 is degraded.

 

[acrosstheveil]

What is your MTRR and MTR status? I have hetero mutations on 2 of my 3 COMTs and I am hetero or homozygous on all my MTRRs and MTR. I was having trouble with anxiety too -- working my methylfolate up to 4 g a day was making me miserable.

My physician had me back way down on the Mfolate and try 1mg MB12 shots every other day. I'm about a week into the protocol and have a HUGE improvement in energy and neurotransmitter issues, though it's a bit uneven.

My good days are so much better than when I was trying to titrate up mb12, adb12 and folate without the shots, and when I feel badly, it's milder and the wiredness isn't as bad so I can actually nap.

I was also probably overestimating how much sublingual b12 I was actually absorbing and taking too much folate.

Depending on your MTRR and MTR snps, you may be severely lacking in methyl groups also. I have one hetero CBS mutation so I'm not supposed to take SAMe, which is the simple work around for MTRR and MTR mutations. The B-12 shots seem to be working very well for me right now, though it's still early days.

fwiw,

Sue

I am heterozygous for MTR A2756G and homozygous for MTRR A664A. Not sure how to interpret that. I've tried fairly high doses of b12 before but not sure if it helped very much. How much methylb12 (sublingually) would I need to take to help mitigate that mutation? I know this is all very complicated but I have been trying very hard for a very long time to resolve this issue without any results to show for it.

 

[sregan]

Took about twice my usual dose of MB12 today (usual is about 30mcg) everything else exactly the same. Noticed a pronounced increased hunger and teeth hurting on a spot I've been having sensitivity. Like I'm very hungry!

 

[acrosstheveil]

do you mean 30 mg? 30mcg is a very very low dose.