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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. grapes

    grapes Senior Member

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    OOPS. That was a typo. It's 50 or more of B3!! I corrected it above.

    And to Valentinjn--I'm definitely still trying methyl B12 again in spite of my numerous COMT mutations with higher levels of folate than before. And I'm EXHAUSTED from doing so, but hoping to get past this soon. I also took my adenosyl B12 yesterday--following Freddd's suggestion to add it in twice a week, and could swear I felt more energy. All I have are 3000 mcg Adenosyl tabs, so cutting that in fourths...tho yesterday, I took half.
     
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  2. grapes

    grapes Senior Member

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    As I go through this massive physical fatigue now for a week after starting higher doses of folate and moving over to methyl B12, I appreciate what I found @caledonia had written in her Start Low and Go Slow article....i.e If you're feeling flu-like symptoms like body and joint aches, cold, extra tired....: this could be a sign of metal detox.

    And that could very well be with me and copper. I did stop the B6 today for a break, as that has always seemed to make me feel bad. And I have also read on these forums that you CAN stop the supplements which are improving methylation and still see the methylation working well in you for awhile...

    BUT I AM NOTICING ANOTHER PROBLEM since I ditched Hydroxy B12 and returned to Methyl---symptoms of inadequate cellular B12 returning. Namely, having my limbs go to sleep too easy. I've especially noticed this twice today. Does this mean that in spite of raising Folate (am at 1600 mcg), B12 is still not being broken down for use?? Do I need to raise Folate?? Confused at the moment....and I may have to reintroduce Hydroxy in the mix.....
     
    Last edited: Apr 23, 2017
  3. grapes

    grapes Senior Member

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    HERE'S A SUMMARY OF ME, WHAT IS RECOMMENDED (and thus what I'm doing) BASED ON FREDDD'S INFORMATION and more:

    For ME, it's very recent issue, in that it was only last Fall of 2016 that I was seeing rising B12 at 1500 (while on methyl B12) and rising iron (while on NO iron supplementation). By January of 2017, my B12 was "over 2000" (while on a combo of hydroxy B12/adenosyl B12) and my iron was in the upper 160s, which is WAY too high for a woman. I was also manifesting symptoms of a functional deficiency of B12---numbness in my legs and little fingers. I then moved to Hydroxy B12, which got rid of the deficiency symptoms...BUT...I was quickly to find out from Freddd that it was NOT the way to go using Hydroxy B12, even if it helped me lose those deficiency symptoms.

    First, his brilliant info taught me that we NEED methyl B12--he said start at 1000 mcg a day. It affects over 600 functions in our body, and it should be the main B12 in our cells. He said to make one's way up to 15,000-20,000 mcg over many weeks or months I don't know yet if that will be true for me. I've only gone up to 2000 mcg and am work in progress on all this. (I also stopped the B12 today since my blood B12 is still quite high i.e. over 2000, and am instead raising folate. More on that later) And by the way, I have six ++ FUT2 which can affect absorption of B12. hmmmm

    We also need some adenosyl B12--he said to take twice a week instead of methyl those two days, but I've also noticed him saying once a week in another place. He also said to wait a week before starting. That's the B12 that resides in our mitochondria. (That really struck me as I have a mito issue, too, probably from mold damage, and later high copper. So I could see how important that was for me.) I've seen to start on 500 mcg and work one's way up to 30,000-40,000 mcg (I also saw up to 50,000 in another comment)...but again, don't know if I would need that much yet. Still work in progress.

    Now WHY would I want to get back on methyl B12 and adenosyl B12 when I know for a fact that my serum B12 was rising on both, and I was having deficiency symptoms?? This where l-folate comes in...and you want to be sure and use an active one, like Metafolin, of any of these: L-5-MTHF or L-5-Methyltetrahydrofolate or 6(S)-L-MTHF or 6(S)-L-Methyltetrahydrofolate or (6S)-5-methyltetrahydrofolic acid. Interestingly in early March 2017, I did a Spectracell test, and guess what was "borderline deficient"? Folate (and other B's) !!! And guess what else?? I also am ++ and+- for MTRR, which is a folate SNP, resulting in poor methylation of B12. I just clearly need way more folate than I've been taking all this time...and perhaps THAT is one reason my methylation started working poorly. So I'm now up to 2000 mcg and will keep going up to see if that will help my B12 break down for use!! I retested my B12 and on 1600 mg folate, it's STILL "over 2000".

    Also important is L-carnitine fumerate--the fumerate is an important version apparently. Carnitine works with the adenosyl and the two are important combinations for energy and mood. It's recommended to start low, such as 250 mg and make your way up to approx 1000 mg a day. I was already on it.

    Finally, since using all the above will help methylation to kick in, your potassium requirements will go up, up for your cell division!! Without extra potassium, they say you will notice this by day 3. For me, it was day 5, and I noticed increasing fatigue. So I got on 4 cups of V8 juice a day to equal 2000 mg of potassium (500 mg a cup). Really helped. I have stayed on it for over two weeks now. I've also read that increasing folate will increase the need for potassium, too.

    It's also mentioned to be on on SAM-e because it makes the methylcobalamin more effective. I'm on 400 mcg and was before I even started all the above. And to use TMG, which enhances the effects of SAM-e, Methyl B12 and L-Carnitine. I'm taking SO MANY supps right now due to various issues including mito dysfunction that I'm not on TMG.

    I am also bringing up other B's which Spectracell said were borderline deficient, including biotin and b6 and other nutrients. I highly recommend Spectracell testing, but be prepared it's expensive.
     
  4. grapes

    grapes Senior Member

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    Hmmm. I want to report that three days ago (starting just a day after I wrote the above), I made the decision to go OFF methyl B12 for a short while, considering that my serum B12 is still super high anyway at "over 2000" (as shown by a recent blood test)..and simply raise my folate...hoping to see that B12 start breaking down better as I raise the folate....

    And to my surprise, I've had a lessening of the B12 deficiency symptoms I was starting to have again i.e. numbness in extremities if I crossed my legs, and numbness in little fingers. Time will tell...

    For the l-folate, and in my case, Metafolin, I've been on 2400 mcg these past three days (800 x 3) and tomorrow, will start 2800 mcg because I've noticed a headache tonite...a sign that I need more folate.

    Oh and I'm back on lithium to see if it can help move B12 to my cells, 5 mg only.

    (Also found out today that my copper levels went up 100 points the past month. Bummer. Will be more committed to upping my zinc levels....

    SUMMARY so far:

    October 2016: Serum B12 has been rising-- 1500 while taking Methyl B12. Got off, moved over to combo of Adenosyl and Hydroxy
    February 2017: Now Serum B12 was "over 2000". Got on Hydroxy only.
    April 4th 2017: Learned from Freddd, after third Meyer's Cocktail with glutathione made me tired and gave me a slight daily headache, that it problem revealed inadequate folate....got off Hydroxy, onto methyl B12 again, plus started raising Folate (which took away the headache!) ...made my way over the next two weeks to 2000 mcg methyl B12, 1600 Folate. Symptoms of B12 deficiency started to show themselves about 5 days ago. So went off B12 for several days and upping folate to 2800 mcg....
     
    Last edited: Apr 26, 2017
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  5. maz

    maz

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    Hi Grapes, How have you been? I found that magnesium could affect my arms going to sleep. I'm doing magnesium enemas as suggested on Dr Myhill's website, to increase uptake.

    I am just getting over my cold/chest infection after 18 days. I found that when I was very ill, I could take 5000mcg Mb12 and 1000mcg folate without getting jittery. So it seems that my needs vary greatly depending what else is going on in my body. I guess immune response cells need methyl groups too so maybe that's why. Now I'm getting better, I'm back to taking a lot less which is now giving me energy again (1000mcg sublingual mb12 and Swanson active B-complex, which has 500mcg mb12 & 400mcg methylfolate in it.). I'm eating plenty of potassium rich foods ( because too many potassium supplements cause gas that sneaks out at inconvenient moments!) because I find that can help my tiredness when on methylation supps.
     
  6. grapes

    grapes Senior Member

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    Hi Maz! Glad you are working on that magnesium. Mine is very optimal, luckily. I've never heard of magnesium enemas i.e. I missed that on Myhill's website. Glad you told me.

    Yes, I think when ill, our needs can increase. I think my CoQ10 needs definitely increase when I'm fighting something. Glad you are getting better.

    I am up to 3200 mg folate. I knew to keep going up because after each raise, I'd get a headache--that for me is a sure sign that my hopefully-improving methylation is demanding more folate. At 3200 mg, I haven't gotten a headache!

    And it's nearly two weeks I've been off the methyl B12, theorizing that the higher folate may be helping that HIGH serum B12 break down for use. So far, haven't had much issue with being off...knock on wood. I know I'll retest it by the end of this month to see.
     
  7. Emily L

    Emily L Dog sitter

    @Freddd so cool! it seems like people are using your ideas :)
     
  8. grapes

    grapes Senior Member

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    An update on me is needed....

    As stated above, I seemed to have found my folate sweet spot at 3200 mg. I say that because at that 3200, I ceased having the headaches that kept appearing the raise, representing the increased need for more folate as methylation improved....

    THEN...I caught a bad bacterial upper respiratory infection about three weeks ago...and though I was still taking the 3200 mg folate, I had stopped the V8/potassium a good week before I got sick..and while sick.

    Also, I had started the antibiotic "generic augumentin" about six days after I got sick...and I was noticing increased fatigue, rising blood pressure (got up to 156/96) and a pounding heart (the latter which I'm pretty sure was related to rising cortisol). I THOUGHT all those symptoms were due to the antibiotic, as many people report high BP on it.

    Well, now I realize that the increasing fatigue was probably due to having stopped my intake of potassium. The high blood pressure "may" have been the antibiotic, but I also wonder if it was due to the higher folate/improved methylation, as well.

    Now Freddd mentioned that the combo of higher folate and COQ10 shot his blood pressure up. I DO take high dose ubiquinol---have no choice. I apparently make NO ubiquinone or simply stopped converting it as a result of mold inhalation a few years ago. Spectracell showed I was "functionally deficient" while even on 1000 mg ubiquinol. Bottom line, I'm very much past that upper respiratory infection, yet still have blood pressure issues and have to control high cortisol which wakes up me REALLY early in the morning--too early.

    For example last week, a week after I stopped the antibiotic, I found my blood pressure down from the 156/96...but at 120/107. That diastolic of 107 is bad!! I started back on low sodium V8 and here's what has gone on since then with my BP:

    128/99
    123/91
    116/85
    111/89 (last night)

    So yes, I've brought the diastolic down from 107, but my diastolic is still too high, even while the systolic has come even farther down!!

    As a result of all this, I decided to take my folate down and see how I do. For the last few days, I've only been on 1200 mg, while still taking the potassium. I'll be retesting my B12 to see if I've gotten below the "over 2000". My high iron already started going down before I started Freddd's protocol.

    I did find something on Phoenix Rising about the potential of over-methylation doing this protocol...and need to find it again....
     
  9. LynnJ

    LynnJ Senior Member

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    I've been using hydroxy B12 for the last few months. I THOUGHT it was going alright, but I just realized my increasing shortness of breath was because I - apparently - don't have enough B12 (in general, or to process the folate, since I have folate deficiency issues). Just one evening of returning to methyl B12 has made me feel so better today.

    No more hydroxy for me.
     
  10. grapes

    grapes Senior Member

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    Good for you! I hadn't been on it long enough to have side effects. Hydroxy B12 DID help my low B12 symptoms even with high serum B12. But once I read all that Freddd had explained, I knew I had to 1) start raising my folate 2) also give myself a lot of potassium, and 3) add in methyl B12.
     
  11. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I find no problems with hydroxy or methyl.....so I guess there is no hard and fast rule in this regard. In fact there is an opposing view that hydroxy is a better form to take if tolerated since your body can decide how much of each sort it takes.

    I think the confusing factor is the rollercoaster effect of sublinguals vs injections or subdermal which give a slower delivery. It's a suck it and see as has previously been suggested.
     
  12. LynnJ

    LynnJ Senior Member

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    I don't know why hydroxy doesn't work as well for me. It did in the beginning, but over time.... Weird. Everyone is different, that's for sure. We all have to do our own experiments and see what works.

    I had to experiment a LOT to find out that folinic acid is the only form of folate I can tolerate. Boy, was that a miserable few months!!
     
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  13. maz

    maz

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    Folkestone UK
    I felt crappy from the get-go when I first tried HydroxyB12 so I stopped. In hindsight, this may have been start-up but I didnt understand that then. However, having had such a good first month on Methyl b12, I never bothered going back to Hydroxy B12. My serum B12 was very high but I have read in a few places that serum B12 does not reflect B12 in the brain, and very high doses are needed to get into the brain.

    I got over my chest infection now and I think the post-viral symptoms are receding so the last couple of days I have increased my Methyl B12:Methylfolate to 5000mcg:2000mcg without a return of the anxious/foggy/hangover feeling previously experienced after my initial "honeymoon" month of simplified methylation protocol. This is either because my body got used to it, I got past the start-up symptoms or because I am taking resveratrol (which I had run out of when the horrible side-effects began). When I am feeling brave and not so busy, I may take a break from the resveratrol to see if it is that or whether its just a coincidence (as most things seem to be). I'm not sure how long I should wait until upping the B12:folate doses again. I'm thinking a couple of weeks. I don't want to return to the state I got in before (my avatar was chosen to reflect how I felt then!).
     
  14. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I waited 6 weeks before making each change when I first started. I noticed it took at least 3-4 weeks for things to settle down in the early stages so I took 3 weeks to "bed in" and the next 3 weeks to see how I felt after my body got used to it. I have no experience of reversatol though.
     
  15. grapes

    grapes Senior Member

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    You might want to read what I wrote from Freddd at the very beginning of this string as to why Methyl is a much better form, and why Hydroxy is not. It made complete sense to me. But since Methyl was simply causing my B12 to build high in my blood, it became clear that I needed to raise Folate a great deal to stop this problem.
     
  16. grapes

    grapes Senior Member

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    Actually, hydroxy will backfire because in order to convert to Methyl and Adenosyl, which the mito needs, Hydroxy has to use more methyl with folate to do the conversion. i.e. it uses what is converts to! See the beginning of this string about Freddd. It makes a lot of sense.
     
  17. Learner1

    Learner1 Professional Patient

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    Pacific Northwest
    We all have different genes and environmental factors, so following someone else's recipe is worrisome. Best to find what works for you, ideally with some decent lab testing.

    I'm familiar with much of what was discussed throughout this thread, but I can't say that much of the advice given works for me, and I have many of the SNPs discussed. There are confounding factors.

    My experience has been:

    1) overdoing folate is not a good thing and can promote cancer (I survived stage 3 cancer...)

    2) I take 10mg of MB12 daily, along with a little AB12 in my multi, and 5mg of B12 once every 10 days, but only 600mcg folate and I have multiple folate SNPs. I'm COMT++ and never seem to get too much MB12.

    3) I've never had a potassium problem

    4) I take large doses of P5P, B2, B1, taurine and molybdenum.

    5) I take mito supplements - my mitochondria seem to have been damaged by peroxynitrites. NT Factor has helped. So has carnitine.

    6) I take 500 mg niacinamide and occasionally NADH.

    7) SAMe screwed me up. I had no methionine, so I take 1g daily and 1g of TMG and do well.

    8) trace minerals help.

    I've been under the care of a knowledgeable doctor, who takes my SNPs and labs into account when prescribing for me. I also have a chlamydia pneumoniae infection that affects my Bs and I've had a whopping heavy metal load that's improved mightily on this protocol.

    All I can say is that if I followed all of the advice here, it would make me sick.
    Its a matter of finding what works for us as individuals, rather than following someone else's recipe.

    Very interesting, though, and I'm appreciative of your sharing the thought process...though am a little puzzled still by having similar SNPs and having totally different needs for nutrients....
     
  18. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Yes I've read it ... And most of the Fredd and Rich V protocol threads before starting on my on journey back in April 2016. However this is not something that applies strictly to everyone as has been reported elsewhere. There also seems to be debate about the taking the different forms separately. I think it's not that hard and fast a rule for everyone with CFS/ME.

    The genetic stuff also seems to be a bit of a blind alley as well apparently. Personally I found the protocol helpful, but I never took SAMe or TMG since I was already taking creatine. After about 9 months on sublinguals I moved from sublingual to sub dermal to avoid tooth decay and to get a better more consistent delivery. This has been far more effective than the original protocol by a long way. It has also meant that I could reduce some of the other b vitamins I was taking (B3 and active b6 particularly). I have ended up taking a very large dose of hydroxy/methyl B12 and a much smaller methyl folate (3x400mcg daily).

    As mentioned before it is a good starting point but the only real rule of thumb I can advise is that the going low and slow rule is a good one. Work out what you think is slow and double the time. The rest is likely to be quite personal to you and where you are in terms of metabolism. It's good that you've collected all the Fredd stuff in one place ....but probably best to also assume that not all aspects may not work 100% since we all seem to take it slightly differently.

    The other thing worth noting is that blood level of B12 when you are supplementing is unlikely to tell you very much. Homocysteine and mma will be better. Not sure if that is what you mean already? The pernicious anaemia society has some good advice on this; if you're interested I can post some more on this if you like. Let me know.

    I wish you luck on the rollercoaster on finding the supplement suite that works for you.
     
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  19. grapes

    grapes Senior Member

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    MMA .11 (<.40)
    B12 over 2000 (top of range 817)

    Symptoms of low B12

    Homocysteine was low last year, but probably because my glutathione fell due to copper detox. But 7 weeks ago, did three Meyers Cocktails to bring glutathione up. Haven't retested it.
     
    Last edited: May 27, 2017
  20. grapes

    grapes Senior Member

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    It may not be that black and white. Some studies say that it may only be increasing cancer that's already started. Then there are studies that connect folic acid to lung cancer. Then there are studies that states its really about taking too little or too much....etc etc. For me, as I increased the folate (Spectracell said I was borderline low), I definitely noticed increased potassium need, plus lessened symptoms of low B12...which implied I might finally be breaking down the B12 for use. But...I couldn't prove it, as I used a different lab and its highest result was "over 1000"....so I don't know if I fell below 2000 or not.
     

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