Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

New protocol thanks to Freddd--going off hydroxy B12, starting methyl B12

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by grapes, Apr 6, 2017.

  1. Learner1

    Learner1 Professional Patient

    Messages:
    1,199
    Likes:
    1,991
    Pacific Northwest
    It's definitely not that simple...
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3806315/

    Also, at the conferences I've been at, the most expert doctors are sharing case studies using NutrEval and HDRI, not SpectraCell.. The SpectraCell is not as comprehensive and perhaps some nuance is being missed.
     
  2. garyfritz

    garyfritz Senior Member

    Messages:
    542
    Likes:
    274
    Do you or @Freddd know if these itchy bumps appear ONLY on the head for this subgroup? A number of people using the Australian B12 oils have noticed an increase of skin breakouts and itchy bumps after starting the oil.

    But these breakouts don't happen on the head, as far as I've heard. Mine are primarily on the stomach and lower chest area, with some itchy bumps on my inner biceps and lower back (roughly the kidney area). On my stomach I get red spots, red bumps, itchy bumps, and itchy non-bump spots. They don't really look like acne, i.e. no whitehead or pus or anything like that. These spots tend to be near where I apply the oil, but not exactly the same area. E.g. I apply oil all along my inner arm, but the itchy bumps only appear on my biceps. I apply on my upper thigh and lower belly, but the bumps appear higher up on stomach/chest -- none where I actually apply it. I have never applied oil to my lower back or on my chest area. I try to apply to hairless areas so I have limited options for experimenting with other locations.

    One member has noticed that this only happens to her when she takes the blended ado/me oil, which is almost all I've used for several years. Greg the PhD B12 expert behind the oils believes the ado/me is the best match for most people, and it has worked the best for me. I tried methyl alone and pretty soon I started feeling lousy. I have not tried separating ado & methyl doses. I'm going to order some methyl-only and ado-only oil and give it a try. I usually take two doses of ado/me at bedtime, so I'll try 2 methyl at bedtime with 1 ado in the morning maybe 2-3 times a week.

    Could this skin condition be caused by too-constant ado or taking ado & methyl at the same time? I'm pretty certain it's not due to photolytic damage. Greg is careful to avoid light damage during packaging, and the bottles themselves are opaque.
     
  3. maz

    maz

    Messages:
    27
    Likes:
    6
    Folkestone UK
    Thanks for that, I'll keep low and slow!
     
    arewenearlythereyet likes this.
  4. grapes

    grapes Senior Member

    Messages:
    220
    Likes:
    137
    UPDATE: I may have been over-methylating on a higher dose of folate for a few weeks and didn't put two and two together. And/or I needed to up my potassium....

    As stated at the beginning of this string, I started to raise folate in the beginning of April when I discovered that a headache went away when I added 200 mcg folate to the 400 mcg I had been on for a long while. It was Freddd who pointed this out me--that I might just need more folate (on top of getting off hydroxy B12 and moving over to methyl B12). And each time the headache came back, I raised again. I made my way up to 3200 mcg successfully.

    I also stopped the methyl B12 by the end of April...surmising that the extra folate might just start breaking down my high B12 for use.

    Then..I got a bacterial upper respiratory infection at the beginning of May. Started an antibiotic (amoxicillin with clavulanate--generic version of Augumentin) which caused my heart to POUND for four days, increased my fatigue (plus raised my BP, but didn't find that out until the 5th day). I stopped the antibiotic. The BP went back down, but my pounding heart really didn't. i.e. my heartrate was always just under 100 no matter what, and it pounded especially at bedtime which would keep me awake. Steady, but fast and pounding. There weeks of that. I resorted to using 1000 mg taurine three times a day, which did help.

    I ASSUMED all this was a bad side effect of the antibiotic from hell.

    But....I may have been wrong. I keep thinking about that folate. SO....two days ago, I took slow-release Niacin with two more cups of V8 for the potassium. I took the Niacin that night again....and slept so much better. I took it again yesterday morning (and heavily flushed. lol. ) Haven't taken it again...and I already feel SO much better and no fast, pounded heartrate.

    So unless someone explains something else to me, I'm going to assume that the 3200 mcg folate was eventually causing me to over-methylate...and I do wonder what role the antibiotic might have played with the folate. The Niacin has really turned things around. Could the turn-around have been the extra potassium? Not sure. It seems to be more about the niacin slowing down the methylation.

    Yes, I stopped all folate two days ago and will stay off for several more days. When I restate, it will be much less.
     
    arewenearlythereyet and Learner1 like this.
  5. arewenearlythereyet

    arewenearlythereyet Senior Member

    Messages:
    1,478
    Likes:
    7,571
    One thing I found is that switching the Niacinamide P5p and folate from single supplements to a b complex helped reduce the swings from over to under quite a bit. This may be due to the b2 in the complex or any of the other components (not sure). Overall though it meant I needed to take less b6 b3 overall. I use "B right" based on recommendations from others here. I also found that I got better results from keeping the folate relatively lower (1200mcg) and upping the b12. Greg reckons that if your b12 stores (in the liver?) have become depleted that it can take up to a year to get these back up so I'm going with this theory at the moment. He also says that nerve damage from low b12/folate can take a lot longer to repair.
     
  6. garyfritz

    garyfritz Senior Member

    Messages:
    542
    Likes:
    274
    Yes @arewenearlythereyet, Greg told me it could take a year to rebuild my stores, too. That was 2 1/2 years ago... For that and some other reasons, I concluded I didn't fit into his model. That's why I kept looking for a cause that seemed to fit my situation, which was how I landed in the mercury camp. Which Greg totally dismisses, but his interpretation wasn't working for me, soo...
     
    arewenearlythereyet likes this.
  7. grapes

    grapes Senior Member

    Messages:
    220
    Likes:
    137
    I've been on Seeking Health's B-Minus for awhile and dosing my own B12 and Folate. But Spectracell showed that I was still borderline deficient in B5, B6, folate and biotin--surprised me when I'd been on B-Minus for awhile...and the Spectracell results showed that the 400 mcg folate I'd been on awhile wasn't quite enough. So I added individual supps for the B5, B6 and biotin...and started the raise of folate...and the latter got me into trouble.

    So perhaps I need to move over to B-Right--looks interesting. Will have to compare the amounts of each B to what's in B-Minus.
     
  8. grapes

    grapes Senior Member

    Messages:
    220
    Likes:
    137
    @arewenearlythereyet Just did a comparison between B-Minus and B-Right for my knowledge. Some of the B's are somewhat equivalent, but it looks like I'd need to add B6, Biotin, Folate and B12 to the B-Right for my needs.
     
    Learner1 likes this.
  9. arewenearlythereyet

    arewenearlythereyet Senior Member

    Messages:
    1,478
    Likes:
    7,571
    Ahh well it was worth a look. You are on much higher folate than me so I guess it boils down to an individual juggling act. I'm relatively stable now and have been for a few months ...it makes you a bit paranoid about changing anything. I hope you find the right balance soon.
     
    Learner1 likes this.
  10. grapes

    grapes Senior Member

    Messages:
    220
    Likes:
    137
    It's worth trying. :) Or I'll just keep looking around. And I'm not going to go back to 3200 mg of Folate. It's what pushed me over into the over-methylation. The odd thing to figure out is that each raise was the right thing to do. I would get a headache, then rise, then no more headache...each step of the way. And at 3200 mg. I had NO more headaches...so it seemed right.

    I will always wonder if the antibiotic had something to do with the 3200 mg of folate pushing me over--some kind of interaction. I was still on 3200 mg when I was first getting sick, and still on it when I had the massive head cold symptoms. It was only after I started on the antibiotic that all hell broke lose (I did end up having a rare bacterial upper respiratory infection instead of viral). Or it may have been coincidental.
     
  11. maz

    maz

    Messages:
    27
    Likes:
    6
    Folkestone UK
    Hey Grapes, I was thinking that maybe the increased heart rate you experienced could be linked to excess glutamate. I've read in several places that many of us have high glutamate and it seems (on wiki) that folate has glutamate in its chemical make-up. I also read that resveratrol increases glutamate uptake so gets rid of it:

    https://scholar.google.co.uk/schola...sciodt=0,5&cites=13411763533213580982&scipsc=

    As I said before that I wondered if me running out of resveratrol had made the difference between the one month of feeling great on the Simplified methylation protocol and the downright yukky, foggy, anxious feelings I got after that which led me to stop my methylation supps for about a week. During that time, I ordered more resveratrol and (also lithium because I read that helped with glutamate excitotoxicity but it made me too stupid!) and started back on 1,400 mcg Methyl Folate and 4000mcg Methyl B12, AND 250mg Swanson resveratrol and had no anxiety or foggy feelings since.
    I also read somewhere that glutamate is a bladder stimulant and serotonin does the opposite and since I started the SMP, I no longer have to get out of bed at 1am every night without fail to pee, even if I stopped all fluids by 7pm! Now I don't need to go until 5-6am (small victory but it makes me feel like positive changes are occurring). I can't recall if this was different when I ran out of resveratrol though so not sure if its that making the difference or improvements to methylation in general.

    I am pleased to say I have been feeling 9/10 every day for the last couple of weeks, although I overdid it the day before yesterday - I was on the go from 6am til 11pm due to a job interview and a late turn at work, so I am suffering with PEM, whole body aching, right now and have had to resort to 800mg of ibuprofen.

    Before trying the SMP I was feeling 7 or 8/10 on good days but only had one good day a fortnight and the rest I was feeling bad (although rarely housebound).

    I think I should also say, that I take 150mg of tramadol every day which alleviates some of the fluey ME symptoms in me. I originally got the tramadol from the doctor for back pain but it a side-effect is that it helps my fatigue!
     
  12. garyfritz

    garyfritz Senior Member

    Messages:
    542
    Likes:
    274
    Careful with tramadol. My mother (age 85) was on it for severe back pain. The doctor assured her it wasn't habit-forming, and she had been taking it for almost 2 years. I finally convinced her it was an opioid and not something to stay on long term. She quit cold turkey and for the next year she kept telling me how grateful she was that I had gotten her off it. She kept saying "I feel like I've gotten my brain back." She was afraid he she was getting dementia, but it was just the tramadol.
     
    pattismith and matt3n like this.
  13. grapes

    grapes Senior Member

    Messages:
    220
    Likes:
    137
    Good grief, I didn't know that about folate & glutamate. Hmmm...I wonder if THAT is why I started having word recall problems again...which I also had last year with high brain glutamate. All I know is that my heartrate went WAY up when I started that antibiotic (and was on 3200 mg folate) but never came down when I stopped the antibiotic the 5th day. What finally got it down a bit starting three weeks later was taking niacin, and getting off folate. I've now been off the folate for almost 1 1/2 weeks and may wait until next week to start again..because I still notice a bit of a pounding heartrate at times...just less than it was.

    I need to find out how long it takes to get the extra folate out of my body. Resveratrol removes glutamate?? That's GOOD to read as I'm also now on that daily.

    I'm sorry to read that you overdid it---EXACTLY what happened to me after last Friday when I also overdid it. Finally figured out three days later with continued fatigue and sleepiness to take amino acids, as I suspected my body drained me of them as a last resort to give me more energy last Friday. And it worked. Here's my CoQ10 thread, as I have a CoQ10 problem affecting my energy levels: http://forums.phoenixrising.me/inde...q10-ubiquinone-vs-ubiquinol-brands-etc.47130/
     
  14. maz

    maz

    Messages:
    27
    Likes:
    6
    Folkestone UK
    Hi Grapes, its sooo hard to know what is causing individual reactions and symptoms isn't it? I just saw on Google that its not unusual for people to get increase heart rate when taking augmentin, so folate could be innocent after all. Having said that, if B3 helps, it indicates too many methyls in your system doesn't it?

    I am wondering if too much Dibencizide was underlying my crash on Tuesday (from which I haven't quite recovered). I took a whole tablet, 10,000mcg, and felt really good all day.... The next day though , totally rubbish, aching all over. I have had headache every day since, although it is getting better now.

    I have to be really careful with amino acids as most of them add to my insomnia. Which do you take?
    I just checked out that liquid q10, a bit too pricey for me to try at the moment but will bear in mind for the future.

    I started writing this post yesterday morning and then found that my 23 and me results were in! Since then I have been glued to my pc giving myself headache. According to Dr Heartfixer's site (and others), my BHMT 02 +/+and 08 +/+ along with my CBS A360A +/- mean that I need to get rid of the sulphur in my body prior to adding in methyl supplements as these will just make matters worse at the moment. Almost everything contains sulphur it seems but some sites recommend reduction rather than elimination so I will probably try that first to see what happens. Ironically, I started to eat a lot of green veg from last October and wondered why I didn't feel in the least bit better.
    I'm also MTRR +/+, so don't recycle methyl B12, and MTHFR C677T +/- so I do need methylfolate at some point.

    If anyone reading thinks what I said about sulphur (or anything else) is wrong, please feel free to enlighten me as I am very new to researching all this and haven't had the time or energy to go back to any actual research.
     
  15. grapes

    grapes Senior Member

    Messages:
    220
    Likes:
    137
    Yes it is. With the generic Augumentin I took, the effect still goes on today to a degree, five weeks after I stopped, and I've been off folate for two weeks now. All I know is that taking three doses of Niacin (which people take to tone down over-methylation) sure did tone done the effects a LOT, which is why I wondered about the overmethylation.

    That's adenosyl B12, right?? I didn't feel bad on it, but it continued to push my B12 sky high. What did the exact same thing to me that you are describing was taking high dose B2 for nearly 4 days. Felt great the first day, then fatigue for days. Turns out that high dose B2 turns on detoxing. Damn. I didn't want to detox. Detoxing is a huge energy-sucker for me.

    The only amino acid I've purposely taken is Taurine. Found out from having it in a Meyer's Cocktail that it made me feel WONDERFUL. So when I fell into overdrive after the antibiotic, I took taurine 3 times a day, and it definitely helped!! Then the Niacin brought down the underlying drive even more.

    But today as I write this, I am collecting urine to test my amino acids. I have very high phenylalanine, aka PKU, which has to mean I don't have enough tyrosine, since phenylalanine converts to tyrosine. And CoQ10 is made from tyrosine!! Is THIS why I don't seem to be making any CoQ10 and require SUCH a high dose of liquid ubiquinol?? We'll see. Yes, liquid ubiquinol is very pricey, but I have no choice.

    Congrats. It's very insightful to see where our risks are. It's from 23andme that I also saw that I have nine mutations of the APTX gene...that could also explain my inability to make CoQ10. So we'll see.

    I do want to tell you what gave me FAR more useful information---the Organic Acids Test. Organic acids are metabolic byproducts of cellular metabolism that show up in your urine, and can tell you if 1) you are lacking in certain nutrients to enhance enzyme action or 2) if you have inherited a metabolic block. I have been blown away from what I learned about myself. Saw my mito issues, saw the PKU issue, and also saw that I don't break down protein, glucose, or fatty acids correctly. The latter breakdown is huge for mito energy. I wouldn't have caught all that with genetics.
     
  16. grapes

    grapes Senior Member

    Messages:
    220
    Likes:
    137
    Time for another update: if you read the above, I became suspicious that I was over-methylating in early May while on 3200 mg folate, which partly explained why I BADLY overreacted to an antibiotic in early May, plus couldn't get my heartrate down for three weeks after I stopped that poison. Niacin finally toned that overreaction WAY down...and before that, taurine did help a little.

    I stayed off folate for over two weeks. I then resumed at 800 mg over a week ago. And I've noticed that I'm still methylating well. So I wonder...did the 3200 mg I was on for several weeks bring up my folate enough that today 800 mcg continues to do the trick? So far, so good.
     
  17. GypsyA

    GypsyA

    Messages:
    85
    Likes:
    42
    USA
    @grapes If you have time, I'd love to hear how things are going and what you've been doing/learning.
     
  18. grapes

    grapes Senior Member

    Messages:
    220
    Likes:
    137
    Well, a lot has happened since I started this post. First, I discovered that all this time, what has been harming me were the effects of intense mold inhalation from awhile ago....And because of having the HLA mutation, my body was staying in a constant state of inflammation due to the inability to fully get rid of the mold I inhaled.

    And what I thought was a mito problem has actually been the result of that constant state of inflammation, called Chronic Inflammation Response Syndrome (CIRS) from the HLA gene issue after inhalation of mold, and thus, having inadequate delivery of oxygen to my mito due to hypoperfusion. Yes, I have been treating all that for many weeks with cholestyramine and MANY anti-inflammatory supplements. I've getting better.

    And all the above caused what appears to be activation of some methylation issues, first noticed a year ago, thus the high iron and high B12.

    And when I wrote this, my B12 became "greater than 2000" noticed at the beginning of this year. And it's STILL "greater than 2000", even working with folate for several months now, though today, I'm on 1600 mg of folate. AND...the problem are those ridiculous "greater than" ranges. Can't stand them. I could have been, for example, 3000, and I could have come down to, let's say 2200 from taking the folate....YET, all I get with the lab is "great than 2000" for my result. So I will never know...

    The good news is that I did get my high iron down with folate supplementation. Just haven't yet succeeded in seeing that I'm breaking that high B12 down for use... I could be to a degree, as I don't have serious "low B12" symptoms as one would have with a methylation problem/high serum B12.
     
    GypsyA, echobravo and Learner1 like this.
  19. grapes

    grapes Senior Member

    Messages:
    220
    Likes:
    137
    Well, I still sit here with "over 2000" B12....and also just discovered my selenium is high. Still on 1600 mg folate and no progress. Irritating.
     
    pattismith likes this.
  20. maz

    maz

    Messages:
    27
    Likes:
    6
    Folkestone UK
    Glad to hear the mould treatment is helping you Grapes. I'm still trying with the methylation supplements, albeit low doses. However, I started a new job 3 months ago and found that quite draining so it's hard to say how I would feel otherwise. I don't deal with stress well and it's a big influence on my symptoms so I'm trying to improve that with meditation CDs and Cranio-sacral therapy.
     

See more popular forum discussions.

Share This Page