Metafolin amount? (mbofov) or anyone?

Discussion in 'Fibromyalgia Main Forum' started by Scapper, Jul 22, 2011.

  1. Scapper

    Scapper New Member

    Can someone please post the amounts of the "alternative" methylation protocol? I'm searching and not find and my brain is soooooo tired :)

    Since I wasn't sure, I started Metafolin (400mcg 1x per day) 3 days ago and woke w/ a headache and was dizzy this a.m. I also get SEVERE headache from Folapro. This headache is more manageable, but I'm not sure why I'm getting this (?).

    Anyway, just wanted to see what others are taking, in case I'm supposed to be cutting the 400mcg.

    Also, Mary, do you still feel an improvement on Freddd's recommendations?

  2. mbofov

    mbofov Active Member

    I'm taking 800 mcg. of Metafolin (400 mcg. 2 x day). I'm also taking 5,000 mcg. Methyl B-12 (Jarrow brand, sublingual) and one Source Naturals Dibencizide B12, also sublingual, per day. Also taking 2,000 mg. l-carnitine fumarate (in 2 doses) and a B complex from Douglas Labs which has no folic acid. On Freddd's protocol, he said he found it was very important to cut out all folic acid, folinic acid, n-acetyl-cysteine and l-glutathione as these could cause a paradoxical folate deficiency.

    Here's a link which gives more info and you really should read this: -

    And Moderators: I did get Freddd's permission to post this.

    Also he stresses that it's extremely likely that your need for potassium may suddenly increase, as the body starts healing. I found that was true for me. I felt good and perky for a couple of days and then got very sluggish and tired, and finally figured out after a couple of days that my potassium had dropped. I'm now taking 1000 to 1200 mg. potassium citrate in divided doses. My energy came back after I started the potassium. I did start with one or two tablets a day, a low dose, and worked up gradually.

    You know, I'm just not sure about Folapro. I know I felt sick on Rich's protocol. My digestion would get screwed up and I would get very tired and just feel sick, and I have none of those symptoms on Freddd's protocol (apart from the potassium fatigue which felt different). I always assumed I was detoxing on Rich's protocol, but there was no end to it after over 3 years. Freddd believes that it was actually an induced folate deficiency. So even though Folapro is supposed to be the same as Metafolin, I am just leery of it. It may just be psychological, but at this point, I'm just steering clear of it. Also, there was folic acid and folinic acid and l-glutathione in some of Rich's other methylation supps, so they may have been the problem.

    So it's really important to read what Freddd has to say about all of this because it is a little complex (but not too much so).

    Your headache could be due to potassium deficiency.

    Anyways, I do still feel better overall on Freddd's protocol, although I still crash, darn it! But in between crashes, I feel a little more normal, have a bit more energy, though I still have to ration my energy or I crash. I'm just hoping that my body is starting to heal, that maybe long-term I'll see some lasting results, but for right now am just crossing my fingers.

    Freddd is really good about answering questions, so if you come up with more questions re his protocol, it'd probably be good to post them on the PR website. If you go to the forum on the PH website, then click on the subcategory: "Detox: Methylation/B12 etc." he'll see your post.

    I hope this helps - good luck!

  3. Mikie

    Mikie Moderator

    Thanks so much for citing your source and the permission to reproduce. It really helps us out.

    Love, Mikie
  4. Scapper

    Scapper New Member

    Thank you sooooo much for taking the time to reply to me at length.....much appreciated!

    I've been at this (on and off, mostly off) methylation protocol since 2007. I bailed out in 2008 after a detox from hell, which took me about a year to recoup from (yeast) and left me w/ some added "issues" to my already messy health crisis. As overwhelming as my health is at this time, I think I'm ready to attempt again, with the hopes of doing things differently.

    A big issue for me is TRYING to comprehend and "retain" -- something I just can't seem to get my brain to do (SO frustrating!!!!). I have re-read the same information soooooo many times since 2007 and I will still have zero recollection -- it's scary at times.

    So, with that said (haha), I appreciate you providing me w/ that link......lots of good information for me to read (perhaps 900 times :)))))

    I'm going to give this a go, again.

    BTW, I read most of your posts and appreciate all of your input are an asset to this board (if I must say so myself :)

  5. mbofov

    mbofov Active Member

    Thanks so much for your kind words! I really appreciate it.

    You know, Freddd's protocol is simple, the list of supplements to take. It's just extremely important to know that he also cut out all folic acid, all folinic acid, all n-acetyl-cysteine, and l-glutathione because these can cause an induced folate deficiency, the symptoms of which feel like detoxing. Some people seem to think the main difference between Freddd's protocol and Rich's is that Freddd uses methylcobalamin B12 instead of hydroxocobalamin, but that's only part of it.

    So if someone takes the Metafolin but doesn't bother to check the rest of their supplements for folic acid etc., they may be not getting the full benefit of his protocol.

    The other very important thing he stresses is to realize you may suddently have an incresaed need for potassium. This was true for me. I first tried potassium gluconate which, although it helped my energy come back, also gave me symptoms of a bladder infection when I took higher doses. It was weird. It burned when I peed and so on but I didn't have a bladder infection. Anyways, I then found potassium citrate and tolerate it much better, only very minor bladder symptoms, if at all, so I recommend this type. I got mine from Vitamin Shoppe, it was cheap but you can get it anywhere, Just be sure to read the label carefully.

    Good luck - let us know how it goes for you - and if you have more questions, I will try to answer them.

  6. Scapper

    Scapper New Member

    Hi Mary: I've read through Freddd's thoughts on always sounds pretty basic, until my body starts detoxing, or producing excitotoxcity, etc., etc.

    Anyway, I'm currently taking 400mcg Metafolin and 2mg Source Natural Methylcobalmin (sublingual).

    Since adding the Metafolin: First 2 days felt an increase in energy, was noticeably more "chatty" and felt upbeat sort of (mentally)......slept better as well.

    Since day 3, I'm exhausted and feel as if I could stay in bed all brain fog has increased to a level of difficulty w/ a simple conversation.

    I muscle tested myself for Potassium (I have been taking Pot.Citrate in a magnesium blend for about 6 months now at a low dose). I'm not getting that I need high doses, but I also don't have a straight Potassium supp on hand to test with.

    I'm wondering if upping my Potassium to 1k would throw off my electrolytes in any way???

    I think I need to try to get out to the Vitamin Shoppe to get this.....I'm sooooooo exhausted and mentally shot, I won't last like this too many more days.

    It's hard to believe that all this happens from 1 400mcg Folate tablet!

    Thanks Mary!


    p.s. I also stopped my B-Complex b/c it contained Folic Acid (shame I bought this product in bulk, since I've been taking same for yearsssssss.
    [This Message was Edited on 07/25/2011]
  7. mbofov

    mbofov Active Member

    You sound just like me. I was perky and felt great for a couple of days on the Metafolin and then hit a wall, very tired and lethargic. I was this way for a couple of days until I remembered the potassium. I don't think you could get enough potassum from your magnesium blend.

    I started slowly, I think with two or three 99 mg. tablets of potassium a day, and gradually my energy came back. Do remember that 99 mg. is roughly 3% of your RDA so it's a not a lot. I wouldn't do a lot all at once, just see how you do, and increase gradually.

    I was worried about electrolytes too, but when my energy came back after adding in the potassium, and reading (and re-reading! until it sunk in) what Freddd had to say about this, and also reading a lot about potassium and how hard it is to od on it, I felt more comfortable taking it.

    I'm at the point right now where I'm starting to cut back on my potassium.

    I've found a link between it and my blood pressure. At first on the metafolin my BP was going higher than usual (over 140) and the potassium brought it back down into the normal range as well as helping my energy. However, now it's starting to go too low (down to 89 or so last night) so am cutting back. Actually today have not taken any, and will add it back as it seems necessary. I wish there was an easy way to know exactly what's going on here, but haven't found one. All I know, though, is that I am doing better on this protocol, just like you did.

    Vitamin Shoppe is not the only place that sells potassium citrate, I just happened to get to their store.

    Yeah, it is amazing that 1 400 mcg. folate tablet can do this! But if you have been suffering from a folate deficiency, which I believe I have been for many years, it makes sense. One article I read said that up to 57% of pepole had difficulty utilizing folic acid - I never realized folic acid was synthetic until I started reading up on all this. And Fredd belives that taking folic acid can contribute to a folate deficiency - it's almost evil ..... we do everything we can to get well and find out that one of our most basic supplements may be hurting us, and no one has had a clue.

    You should probably look into getting another B complex that has metafolin instead of folic acid. Douglas Labs makes one and so does Pure Encapsulations. Unfortunately it costs a bit more than many brands (I think I paid $20 for two months of Douglas Labs brand), but c'est la vie.

    Nothing with this DD is easy or simple or affordable!

    Take care -

  8. Scapper

    Scapper New Member

    Well, I got myself out yesterday (a real feat!) and got the Potassium Citrate. I was in such an exhaustion state, mentally and physically, driving was real difficult.

    I immediately opened and took 2 (99mgs) in parking lot. I had to make another stop, so about 1/2 hour later, took 2 more. I swear, I felt a "tad" better after about 2 hours or so......and this usually never happens to me, especially when I'm in a "zombie" CFS state.

    So, I probably took about 600 mgs last night, divided up......not sure exactly. Today I woke up MUCH BETTER. Days 4 thru 7 on Metafolin were **horrendous** exhaustion and a complete inability to even a scary level.

    Last night I was on the phone and my toes were cramping up on me. Had I not been on w/ my sister and said this "out loud", I never would have made the "connection" to a potassium drop. I remember getting the toe cramps on Saturday (day 4) as well -- I'm amazed at HOW fast this happened upon taking 400mcg Metafolin.

    I have to read Freddd's explanation as to "why" Potassium drops (?)

    Thank you for sharing your BP experience w/ me as well. I'll keep my eye on that. Today at my doc appt., I was a "tad" higher than my norm, so I'll watch.

    I will also get a new B-complex. I have literally been taking this B-complex for as long as I'm sick (16 1/2 years), "thinking" (as you say) that I was doing a good thing. I've had severe foot neuropathy since onset and my holistic doc has always kept my B vitamins going for my nerves.....needless to say, with no results.

    I have a tough time for some reason navigating PR website, my cognitive ability has declined to a low low level. I have to get over there to find out how to proceed.

    Thank you Mary!!!!


    p.s. You know, come to think of it, I remember having SEVERE toe cramps CONSTANTLY in 2008 and 2009 after doing the meth protocol.....a friend at the time used to tell me to "eat a banana" but of course it wasn't "enough" to stop it. IF I only know then :)

    [This Message was Edited on 07/26/2011]
  9. Scapper

    Scapper New Member

    Interesting.....thanks for checkin in Jam.

    So many things to keep on top of!

  10. mbofov

    mbofov Active Member

    well, that is amazing. That's what happened to me with the potassium. And the feeling of exhaustion and lethargy was different than a crash, but also familiar - I'd felt that way before I ever started Freddd's protocol, which makes me think I've had a problem with low potassium off and on but it was never picked up by anyone and I knew nothing about potassium until all of this.

    I am really glad you are doing better! and extremely grateful to Freddd for paving the way for us. I never would have figured this out.

    I'm wondering about your foot neuropathy - neuropathy can be a symptom of B12 deficiency. I've read it's very important to take enough B12 while fixing a folate deficiency, because though symptoms may abate when one takes enough folate, it can mask an underlying B12 deficiency, causing further problems. I know that Freddd recommends taking more B12 than you are - so you might consider upping that a little, or talk to your doctor about it.

    I find the PR board more difficult to navigate too, but if you just cut and paste the link I posted above, it will take you to Freddd's post about his protocol.

    As I recall, he says that taking the Metafolin and methylcobalamin will suddenly start the body healing (he may have said that the methylation cycle will suddenly start), which can cause a sudden need for more potassium as cells start working properly. That's my layman's explanation. He also says that taking folic acid can quickly cause an induced folate deficiency too.

    Well, hang in there - I hope you continue to do well!

  11. mbofov

    mbofov Active Member

    Keep us posted on your labs (and your MRI results). That will be interesting to see if your surgery affected your vitamin D levels --

  12. Scapper

    Scapper New Member

    I'll have to play around w/ my methylcobalamin level. My foot neuropathy came with the "sudden onset" of viral symptoms and has never waxed and waned for me after all these years.

    I've always hovered around 2mg or so and have been taking the methyl form for several years (since reading Rich's work, 2007).

    An interesting tid-bit (you may already know), my holistic practitioner told me that "if" I'm taking "too much" B12, my nose would bleed, which sounded strange to me at the time.

    Sure enough, if I up my dosage to anything over 3mgs, my nose bleeds. Therefore, I was holding off on ordering the Dibencizide B12.

    Has this ever happened to you?

    Several months ago my doc gave me a script for methylcobalamin injections, but my compounding pharmacy couldn't get it for me.

    I saw that Freddd uses very high doses intramuscularly. Have you gone this route?

    My G.P. told me if I brought her the protocol that states I need more than 1x per week of B12, she'd write it.

    Opinion? Thoughts?


    p.s. I also get a headache from Metafolin -- do you?
    [This Message was Edited on 07/27/2011]
  13. Scapper

    Scapper New Member

    Woke up sick as a dog today :(
  14. mbofov

    mbofov Active Member

    I'd never heard of too much B12 causing a nosebleed, but I just googled it and found one link that said there was a connection. So I would listen to your doctor on this, especially as you get a nosebleed when you increase your dose. I've never had that reaction tho.

    I did methylcobalamin injections for several years, got them through McGuff Compounding Pharmacy so you might try them (You can find them on-line - they're in California). I was doing 5,000 mcg. 3 x a week, I don't think as much as Freddd. I didn't feel any better while doing them - but maybe they helped protect against neurological damage. My energy only picked up when I added in the Metafolin. I am cutting back to 400 mg. of Metafolin (from 400 twice a day) as the B complex I'm now taking has 400 mg. as well.

    Metafolin doesn't give me a headache. I don't know what to tell you about that. Maybe cut the dose some more? I just did a brief google search for "Metafolin headache" and the third hit that came up was by someone on the Phoenix Rising board, who also got a headache from Metafolin and talks about possible increase in histamine. So I suggest you take a look at that - maybe your doctor who seems to have an open mind could explore this further for you, the issue of histamines.

    The headache and metafolin would be a good question to pose to Freddd. If you go to hte Phoenix Rising main site, then click on the "forum" link at the top of the page, and then scroll down about 2/3 of the way to the link "Detox: Methylation/B12 etc.", that's where Freddd has all his posts, so that's where you would post a question to him. You have to get a username etc. of course to post. Anyways, he knows a lot, so I would give that a try. I really don't have a clue myself.

    Re the B12 injections - Freddd believes quite strongly that the Jarrow sublingual B12 is better than the injections, and I've switched over to just taking B12 sublingually. I don't know what to tell you re the injections, although since you get nosebleeds when you go over 3 mgs., it might not be good to add in injections.

    I wish I had answers for you on all of this! and me too, actually. I've cut way back on the potassium because my BP was going too low, and I don't seem to need it now. All I can do is go by how I feel and do a lot of reading - I can't get daily blood tests.

    I saw your other post where you said you woke up sick - I don't know if you're "sick sick" or reacting to the supplements - when in doubt, I cut out whatever I think could be the culprit and see if I improve. Since the metafolin is giving you headaches, if it were me, I would cut back or maybe not even take it for a day or 2 and see how I felt.

    Take care -

  15. mbofov

    mbofov Active Member

    It occurred to me that Rich might be able to answer some of your questions re metafolin and headaches etc. - theoretically it's the same as Folapro. So it might be good if you did a post addressed to him with some of your questions. He's also really knowledgable about B12, though I know he and Freddd have differing views on what type to take. Anyways, he is a good resource.

    I woke up extra tired today and realized I need to add back in some potassium but am going to aim for half of what I was taking before.

    I hope you're feeling better --

  16. Scapper

    Scapper New Member

    Thank you so much for your replies!

    I was thinking about posting to Rich and then couldn't get the words together for myself. I'm going to do that now.

    Today was another completely crashed day......couldn't pull head off out of bed close to 3:00pm and felt sick all day.......extreme exhaustion w/ a lifeless body and my brain fog is off the charts.

    I'm going to skip the Metafolin tomorrow to give my body a break. I should have skipped today, but took it w/o even thinking upon waking.

    As far as the headache, I got this back in 2008 from Folapro as well. I remember people talking about headaches back then. I think I took Molybdenum for it. I tried doing searches but didn't find posts I was looking for.

    Again, thanks for your input. I'll try to get a hold of Rich (he is so great!!!)