The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
Discuss the article on the Forums.

Starting mega doses methylcobalamin/methylfolate

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by JCamp, Nov 28, 2014.

  1. JCamp

    JCamp

    Messages:
    67
    Likes:
    46
    Hi, All.

    I've played around with low doses of methyl b12 (1-2mg) and methylfolate (800mcg) for the past six months and noticed no effects. Five days ago, I started taking 15mg methyl b12 (5mg 3x/day, by Jarrow) and was hit with HUGE drowsiness by the second day. It feels like I swallowed a lot of benadryl or melatonin supplements. The drowsiness is day and nighttime. Part of me thinks it's a good thing (the sedation has taken my wired anxiety down quite a bit), so haven't backed down. I'm not taking any methylfolate, but plan to start it this weekend, and add in dibencozide and LCF over the next 7-10 days.

    Is this a side effect saying to continue or is it saying to back down?

    I don't really want to back down because I feel it is helping -- I'll take the sleep! And I also feel like I'm not crashing from walking across my apartment. I think I am much less weak.

    I don't know my genetic mutations -- hoping to get those in early 2015. I take a good food-based multivitamin and mineral supplement (Megafood) and Jarrow's B-Right (switching to Thorne once this bottle empties). I also supplement with additional electrolytes daily because i use frequent sauna and epsom salt baths. I'm going to have extra potassium on hand as I ramp up the other supps. I eat a whole foods, mostly organic diet that is free of gluten, dairy, and sugar with limited grains. I can't add in all individual supplements without feeling VERY overwhelmed, so trying to keep as simple as possible.

    I have had very severe CFS (no pain) for five years, with gradual onset the decade prior. I haven't had refreshing sleep in many years and I do have a lot of cerebral vasculitis from SPECT scans. I am mostly bedbound and have caregivers. Reading long paragraphs, watching tv, and writing are difficult. It is difficult for me to converse -- especially any type of planning conversations. I have to take many precautions when looking at a screen due to overstimulation (where blue blocker glasses, use f.lux, etc).

    I am also doing Dr. Brewer's antifungal protocol for mold toxicity (started three months ago). I'm hoping these two things can work synergistically. I don't see Dr. Brewer again until early 2015 so I am doing this without a doctor's support and that does scare me a bit.

    I don't want to end up on the other end of the bell curve -- so much b-vitamins that I become deficient in other things. A year ago, I almost ended up in the ER after two months on vitamin D supp (just 2,000iu/day). I know Vit D is different beast than B12, but I still want to be extra careful.

    Since I can't read or look at screens well, filtering through all of @Freddd's and Rich's posts is overwhelming. I love what I have been able to read and I am so grateful for their contributions, along with all of the posts from other followers of methylation protocols.
     
    Last edited: Nov 28, 2014
  2. fibrodude84

    fibrodude84 Senior Member

    Messages:
    190
    Likes:
    114
    Your mutations will be helpful in guiding the conversation. For now I think it's largely trial and error. The lower amount you were fine, but this high amount is causing trouble. Listen to your body and move up slowly. You can also have 50mg of flushing niacin (you'll be flushed 20 min but it's harmless) and that can help suck up some methyl donors.
     
  3. helen1

    helen1 Senior Member

    Messages:
    968
    Likes:
    1,339
    Canada
    melamine and JCamp like this.
  4. Freddd

    Freddd Senior Member

    Messages:
    4,934
    Likes:
    1,450
    Salt Lake City
    HI JCamp,

    I think Helen has it pegged. Another factor to consider is that MeCbl does cause melatonin generation and over time normalization of sleep. At first the melatonin can be out of phase with the clock. Get getting exposure via your eyes in the morning cam help bring that around. It took me some months to get the sleepiness lined up with late evening. I consider this a most excellent response and now build upon it and perfect it. For me it was finding dozens of incremental things giving improvement that allowed me to heal from FMS/CFS/CHF. Keep on going, get this balanced out using all the clues you get.
     
    JCamp and helen1 like this.
  5. JCamp

    JCamp

    Messages:
    67
    Likes:
    46
    Thank you all! Very helpful responses. :)

    @fibrodude84 - I think you're right in that I may need to back off a little bit until I get my genetic profile, but that may not be until 2015.

    @helen1 - That document is great. I will print it out and read slowly. The best part I saw was at the end about getting a doctor's support. I'm just not comfortable going this high without someone who knows about it following me in person.

    @Freddd - Thanks for the folate encouragement. I'm adding it in today (just 400-800mcg to start; trying to find some tablets locally that I can dissolve sublingually). My drowsiness became a full on drugged stupor yesterday and last night. I became very disoriented, nauseated, and my cognition, confusion, and memory became even worse. It was scary. I'm only doing 5mg MeCbl today and adding in the folate. I understand about startup but I don't want to harm myself further....seems a tricky balance.

    Any further reassurance or guidance is appreciated! :)

    There is definitely a similarity between this response and when I tried melatonin supplements and other ayurvedic herms (specifically ashwagandha). I've also had extreme negative reactions to ALCAR in the past -- overstimulation and relentless insomnia from just 100mg.
     
    Last edited: Nov 29, 2014
  6. JCamp

    JCamp

    Messages:
    67
    Likes:
    46
    Well, @Freddd and @helen1 were definitely right. THANK YOU.

    I've added in 800mcg of methylfolate the past few days and feel "clearer" in some ways. It's not consistent or long-lasting but it's lasting about an hour or two a few hours after I take both MeCbl (10mg-15mg) and Folate. I'm still experimenting with dose since taking folate too close to bed the other night allowed only a few hours of sleep. I want to keep the melatonin surge at night and the clearer head during the day.

    My severe CFS has me at about a 1-1.5 on a scale of 1 to 10. I feel like I'm at about a 2. I'm going to gently experiment with methylfolate dose for a few days and then add in the dibencozide.

    My only concern is I'm hitting the point my antifungal protocol is scheduled to start working and I don't want to cloud the results (i.e., knowing which system is working). I'm hoping the methylation protocol can simply help the antifungal along.....
     
  7. JCamp

    JCamp

    Messages:
    67
    Likes:
    46
    Hi, All.

    Quick question. I'm loving the stamina and energy I am feeling ten days into starting my high B12. I walked and went to a shopping store yesterday with a friend with NO post exertional malaise or crash afterwards. I'm still taking 10-15mg Methyl B12 each day but I cannot get above 800mcg methylfolate. It's just making all of the anxiety, depression, and insomnia I had before starting methylation worse. I'd like to back down to 400mcg but I'm afraid to go that low while still so high on the Methyl B12.

    Is it dangerous to have the B12 and folate so out of balance (ie, really high doses of one while small-ish doses of the other)? I don't want to decrease the B12 because of the wonderful strength, stamina, and melatonin effects I'm feeling (ten days ago I was nearly purely bed bound). The folate has made the daytime drowsiness better but the nighttime sleep worse again (back to before I started). I'd also like to start my dibencozide soon but want to get the folate stable first.

    Any thoughts?

    Thanks so much!
     
    Christopher likes this.
  8. cobain_justinsane

    cobain_justinsane

    Messages:
    53
    Likes:
    17
    JCamp

    I have also noticed that I get quite severe depression from taking small doses of methylfolate. Check out some of my recent posts. Next week I'm going to start on b12 for a while. Ramp that up and then start on methylfolate.

    I'm also going to try some magnesium when I begin the b12.
     
  9. JCamp

    JCamp

    Messages:
    67
    Likes:
    46

    I noticed the depression increased with high meb12, not folate...quite the opposite with folate, actually.

    I've been doing this for two weeks now. There have been some scary moments with nausea and weakness, but it comes and goes with enough better moments to keep going for now.

    One constant symptom that's developed is worsening tingling in my feet. It never ceases. Is this an obvious nutrient deficiency?

    I'm switching to yasko' all in one shortly but finishing a bottle of megafood multi first.
     
  10. cobain_justinsane

    cobain_justinsane

    Messages:
    53
    Likes:
    17
    Do you find that MB12 worsens your depression while folate relieves your depression? If so what doses of the two are you taking and are you taking methylfolate?

    Also, do you know your snp's?
     
  11. JCamp

    JCamp

    Messages:
    67
    Likes:
    46
    I don't know my SNPs. Hopefully in early 2015.

    I can't tell what's driving what. I've backed off greatly until I have a doctor involved since I live alone and am so severely sick that I'm not willing to harm myself further. The depression is/was unbelievable.
     
  12. melamine

    melamine Senior Member

    Messages:
    341
    Likes:
    375
    Upstate NY
    I suppose it's a matter of finding the right personal ratio within the general guidelines, but could it be your are not tolerating the Methyl form of B12, and have you considered trying the Hydroxy form?
     
    Last edited: Dec 11, 2014
  13. xena

    xena Senior Member

    Messages:
    122
    Likes:
    75
    hey @JCamp how is it going with the antifungal protocol and the mb12/folate if you are still doing those?

    i'm starting something similar now with both
     
  14. Critterina

    Critterina Senior Member

    Messages:
    1,200
    Likes:
    691
    Arizona, USA
    Are you still having this? Do you have a doctor yet? Did you have any peripheral neuropathy or loss of feeling in your feet before you started the supplements?

    I ask this because there is a correlation of B12 relieving the pain/tingling of peripheral neuropathy, especially when it's caused by B12 deficiency. But there is also a correlation of too high doses of B6 causing it. Not something to be taken lightly or guessed at.

    My guess is that you'll show the same MTRR mutation as me, and probably the MTHFR C667T (maybe +/-). Just my guesses, from your posts here.

    Best wishes!
    Critterina
     
    JCamp likes this.
  15. JCamp

    JCamp

    Messages:
    67
    Likes:
    46
    I am now up to 800mcg folate. I have to go up so slow and although I very slowly reached 800mcg two weeks ago, I'm still noticing wired effects from it. But I'm also slightly clearer and better too. Slightly. ;-)

    I have the LCF to add in but I don't feel stable enough on the folate yet to do so.

    I seem to be able to take as much b12 (any type) as I'd like without effect now. I'm not sure what that means.

    I have also recently switched to source naturals b12 lozenge because the others had citric acid in them and were destroying my teeth.
     
    Last edited: Apr 6, 2015
    xena likes this.
  16. JCamp

    JCamp

    Messages:
    67
    Likes:
    46
    I am still having the tingling in feet! I only take 10-20mg b6 per day. Usually only 10. Is this enough to cause issue? I didn't think so. I take 5-10mg b12 each day

    Thanks for your post!
     
  17. JCamp

    JCamp

    Messages:
    67
    Likes:
    46
    Hi all.

    So I've had a huge bust after a nice boom when adding in LCF. It seems like this is common and possibly indicates another deficiency. I just don't know which one. I had a more pleasant couple of weeks at when I added in 1/4 of an 855mg LCF capsule. All parts of DQ in place with a good multi, plenty of electrolytes, and a solid b complex.

    But now I've hit a new low -- bed ridden with fatigue, nausea, headache, and fog. And a huge depression has appeared that is abnormal for me and a bit scary. Again like I've just taken a lot of Benadryl with a depressant. I no longer feel a positive jolt in the am after taking folate and LCF. The headache and nausea are new symptoms for me as well as constipation, a strange diuretic-like effect the past couple of days. My thirst is increased and my dry eye syndrome worsening (increased b2 made it worse). My ability to read is declining further as well.

    Increasing folate or b12 just makes it worse. It doesn't seem to be zinc, vitamin c, or vitamin d related. It's definitely not potassium. No cramps or anything. But I can't do anything I was doing even before folate/LCF. no sauna, needlework, painting, etc. just very drowsy and nauseated. I cut down my meb12 from 5mg to 2mg to see if that helped but no effect. I also upped some b2 and b3 but that made it worse. I'm hardly taking any b1, b2, or b3. My bcomplex and multi are fairly low in these. Upping folate also makes the fatigue/drowsiness worse -- the opposite of what adding folate has done in the past.

    Any ideas?

    I don't know my SNPs. I will have them mid June. I'm thinking I just need to stop everything but the multi and go back to square one since intuitively i feel like I'm doing more harm to my fragile body. It's so disappointing since there was a positive initial effect once I got to 800mcg folate and the bit of LCF.

    Another side note to prove how different we all are-- I notice some say that folate stops hair loss in its tracks but it's the opposite for me and always has been. Whenever I add folate, I get immediate hair loss within an hour. I can't figure that one out.

    Thanks everyone. :)
     
    Last edited: May 2, 2015
  18. sflorence

    sflorence Senior Member

    Messages:
    119
    Likes:
    25

    I just added B1 (benfotiamine) to my regimen. I started at 500mg daily and now I am hovering around 1,000mg. It has been a huge factor for me. Lifted lots of depression, relaxed me, and gave me some energy. I feel like B1 is big because it is an "up the river" B vitamin that effects B2 and B6 absorption.
     
  19. Tigger

    Tigger

    Messages:
    63
    Likes:
    4
    Hi @JCamp,

    My reactions seem very similar to yours. I've been going on and off with this for a year and a half now. Any progress?

    I find that I do very well on high dose folate (15 mg x2/day) and much lower mb12 (1 mg x1 at night). I am also confused as to why this is.
     
  20. xena

    xena Senior Member

    Messages:
    122
    Likes:
    75
    @Tigger could be the mthf is helping you compensate for low bh4 levels and helping make neurotransmitters
     

See more popular forum discussions.

Share This Page