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Questions after 3 weeks on Freddd's protocol

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by picante, Nov 4, 2014.

  1. picante

    picante Senior Member

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    I wrote a concise intro to my illness here: http://forums.phoenixrising.me/index.php?threads/hi-everybody-i-love-this-forum.33471/

    I've been following the guide that @ahmo put together, and doing lots of searches on PR. What a great resource! @Freddd, you have all my admiration for discovering the deadlock quartet. That was a major feat of the intellect.

    My responses to the protocol so far:
    Less frequent hypoglycemia and significant pain relief (lower back).
    No adverse reactions whatsoever to methylfolate (hooray!).
    Started on 1 tab mB12 (1000 mcg) and 1/4 tab AdB12 (750 mcg-- it's a 3000 mcg tab)
    First response to mB12/AdB12: diarrhea the second morning (methylfolate deficiency!)
    In a week, I titrated slowly up to 2.5 mg methylfolate per day (divided into four doses).
    On day 5, I added in some K-gluconate powder because I was having neck spasms. This helped!
    Days 5 & 6 my fatigue was worse, and I had an increase in myofascial pain (forearms). Starting T3 6 years ago had relieved this pain, so this was the return of an old symptom. So on a hunch, ...

    On day 7, I added a second dose of mB12/AdB12 (1000 mcg/750 mcg). This helped the myofascial pain, but triggered more neck spasms and low back inflammation, so I increased potassium and methylfolate.
    Meanwhile, I started to bleed around day 5. I'm 1 year post-menopause, and Lugol's iodine was what finally stopped my intermittent spotting a year ago at age 57. I tried deleting some of the newer supplements, with no effect. So I increased my dose of Lugol's, and that stopped the bleeding.

    I didn't add in L-carnitine until day 14 (liquid, approx. 125 mcg) and it triggered more fatigue, diarrhea, and brain fog. All much improved with more methylfolate.
    Currently I've titrated up to twice a day mB12 (1000 mcg) and AdB12 (1/2 tab = 1500 mcg). 4.5 mg of methylfolate per day (in 4-5 doses) and potassium as needed, usually totaling 1000+ mcg per day. Jarrow liquid L-carnitine 1/2 tsp. = 167mcg.

    Questions:
    1. Is there a recommended procedure to try and get the best ratio of mB12 / AdB12? I tried increasing AdB12 to 2250 mcg one day, but felt worse.
    2. When should I try raising L-carnitine? (No anxiety so far.)
    3. I'm having a lot of sluggish brain & lack of focus (scattered). Maybe raise mB12 or metafolin more before I try raising L-carnitine?
    4. Neurological brightening: I haven't experienced that. Why not?
    5. Is there a see-saw between methyl trap and partial methylation block? Am I experiencing it?

    Thank you kindly to anyone who offers guidance!
    Julie
     
  2. picante

    picante Senior Member

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    Oh, in case this comes up, my other daily supps.:

    For Hashi’s and impaired T4-T3 conversion: T3 [Cynomel], selenium 200 mcg, Lugol’s iodine 3 drops ≈ 30 mcg

    For gut clearance: Silica gel, Quicksilver IMD homeopathic (heavy metals), Yucca (ammonia), Na-K-Bu (ammonia), Da Vinci Mega probiotic-ND.

    Protocol cofactors: Krill oil, Seriphos, malic acid, D3 5,000 iu, pantethine (B5), P5P (B6), ionic Mn & Molyb, Yucca & nettle tinctures (for B1, B2, B3, B6, A,C, E, minerals), zinc picolinate, transdermal Mg oil.

    For sleep: melatonin 1 mg, Bach rescue sleep, food in the wee hours if I get hypoglycemic.
     
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  3. sueami

    sueami Senior Member

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    I found the first two months to be a huge roller coaster of potassium deficiency, anxiety and brain fog. Stretches of good days followed by periods of rising symptoms. Things are much, much smoother for me five months in and I mostly see either stability or healing now. I really only crash when I push myself physically or mentally, or eat foods I shouldn't, or life throws a big, stressful curveball.

    (I also think that managing/healing from chronic fatigue requires a lot of resting, understanding new energy boundaries and honoring them. I'm not sure I'll ever return to what I would have called normal, but I'll be happy if I can be moderately active, careful of my self-care habits and my body's feedback, and feel more or less symptom free. Right now my activity levels are still pretty circumscribed but when I stay within them, I feel pretty darned good. Better, moodwise, than I have in several years, actually, and I've only been dealing with steady chronic fatigue since January.)

    It's a frustrating but I think necessary process of titrating up and down and back up again on the key supps in the early months, doing your best to manage the worst symptoms (and stay on top of the electrolyte balance!), tolerating what you can and backing down on supplement levels for a few days or weeks when it seems too much.

    I wonder whether we are even really titrating effectively or simply just getting through a hiccup-y period of restarting methylation processes, like a car that hasn't been run for a while and runs rough and even stalls out again, until the fuel starts running steadily and more cleanly through the engine.

    That is to say, I'm not sure you're doing anything wrong now or would get better results by pushing dosages -- it might be a matter of time and patience and some adjusting as symptoms present, intensify or fade.

    My cognitive improvements came with the Adb12 -- maybe two months in to a protocol of roughly 3-5mg per day sublingual, once I decided to push that to the full 8 or 10 mg tablet/day. I've seen other people credit L-carnitine fumarate for neurological improvements.

    Everyone's amounts and ratios of the various Bs are going to be different based on their genetics. I need tons of mb12 (MTRR and MTR snps) but I get horribly anxious and wired because of other snps (COMT and others). I need lots of folate b/c I"m compound hetero on the MTHFR and I have several other serious mfolate imparing snps, but I also have SHMT which keeps me from utilizing methylfolate well, so I also am taking folinic acid, a slower-to-convert form of folate that is supposed to get around that SHMT roadblock.

    The recommended final dosage on L carnatine fumarate is 500mg with some people responding well at 1000mg.

    As a side note, many of us take Drs Best L-car fumarate and Solgar folate, per Freddd's recc. You might consider switching to those brands with your next supp purchase. Some of us are also having very good results with a trandsdermal b12 oil (a higher absorption percentage than the sublinguals.)

    Good luck with it, and others will have great answers for you, I'm sure.
     
    Last edited: Nov 4, 2014
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  4. ahmo

    ahmo Senior Member

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    Glad to hear you're making good progress. And yes, Deadlock Quartet is a great find.:nerd:

    The only thing that occurs to me is whether you're also taking magnesium? Also, in case it matters, your T3 might have gluten-cross reactive corn starch in it. took me a long time to find that out and resume compounded T3. That's not related to your current symptoms, but overall autoimmune issues. Sue seems to have responded pretty comprehensively.:)
     
  5. picante

    picante Senior Member

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    @sueami, thanks for the encouragement and suggestions. I understand why there is no one-size-fits-all ratio of MB12 to AdB12. I just wondered how others have gone about finding their optimal ratio.

    Right now my only genetic info is that I'm compound heterozygous MTHFR, like you. Does that imply that I need a ton of methylfolate? I'm awaiting my 23&me results.

    And yes, I've seen the threads on the Australian B12 oils. Also the thread on B12 inhalation therapy. Very promising, both of those options!

    Electrolytes: besides the potassium gluconate, I'm taking Himalayan salt in a glass of warm water. And transdermal magnesium oil.

    I do wonder if the LCF would be more effective than just L-carnitine, but first I want to determine what my tolerance is. It's a real job trying to find the supplements with the least offensive filler ingredients. The methylfolate I'm taking is Pure Formulas, and it "looks" better to me than the Solgar formula, but I wouldn't swear to it!
     
  6. picante

    picante Senior Member

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    MEXICAN CYNOMEL INGREDIENTS: Corn Starch, Calcium Sulfate Dehydrate, Sugar Glass, Talc, Stearate Acid Powder, Gelatin, Ethyl Alcohol, Purified Water

    I've never noticed any reaction to wheat, although I've dropped it completely from my diet because that's the recommendation for people with Hashi's. GM corn, on the other hand, has given me a few problems, so I eschew it in favor of organic corn (tortillas & such).
    I've just done a trial of T3 compounded in olive oil, and got very hypo, so I went back to Cynomel. Presumably I wasn't absorbing it as well.

    As for magnesium, I've been taking the transdermal Mg chloride from Ancient Minerals. Perhaps I'm not getting enough, though, now that I'm taking a lot of potassium? What form of Mg do you take?
     
  7. sueami

    sueami Senior Member

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    If I recall correctly, I think Freddd's advice was to titrate up on Mfolate and MB12 first, and once those supps were at a level where folate and b12 deficiency symptoms were under control (and the potassium and other electrolytes were in balance, which means after methylation startup had smoothed out and you've figured out how much extra potassium and magnesium you need), then add Adb12.

    I don't recall being clear on what symptom was caused by what deficiency, so I think I just raised mb12 or folate by 200 mcg every couple days and if my anxiety/speediness got too bad, I'd back down 200 or 400 mcg on one or the other (I actually was probably too high on folate for quite a while but didn't realize it. I played more with the MB12 amounts because I thought they were causing my anxiety.)

    I added in Adb12 early on, never had a negative reaction to that (that I could tease out at least).

    In retrospect, I think I would have started with just methylb12, to see how that was affecting me for a week or two, then added in methyl folate once I got to 2mg of mb12. (One of the trickiest things about b12 is the terrible absorption rates. Sublinguals absorb anywhere between 5 and at best 30 percent. So a 1 mg tablet might actually be absorbing in the 200 mcg range. So 2 mg translating to maybe 400mcg absorbed.) Then I would have started mfolate, at 200-400mcg to see how that felt.

    But I totally understand the desperation to feel better and to stop the downhill slide and to want to start all the supps as quickly as possible. What I realize now in retrospect is that no matter how quickly I tried to add them in, my body was only going to use what it could at a set pace and was going to take months and, who knows, maybe a couple years to repair what damage it can and refill the stores of useable b12. Pushing in those early weeks didn't make anything happen faster and only created some really unpleasant side effects episodically.

    Pushing dosages can push electrolytes into imbalance, and that can be really scary. I do the same transdermal magnesium as you sometimes, but my daily supplement is 400 mg of magnesium glycinate chelate and one 1500 mg timed release potassium.

    My low potassium symptoms seem to be muscle cramping and heart palpitations/beat skipping. I think my magnesium symptoms are muscle twitches. If I feel any of the above, I take another 200-400 mg of magnesium glycinate chelate, spray mg oil on myself and I'll add another 300-400 mg potassium gluconate and a banana or coconut water if it doesn't calm down.

    And yes, the compound hetero mutation is supposed to impair our ability to turn folic acid into 5-methylfolate. This is a great presentation by Ben Lynch on it. He estimates our loss of function at 40 percent, though I don't know if others agree with that. There are other genes governing other parts of the folate cycle that can also be mutated and in my case reduce functioning even more than the compound hetero status. So knowing your full snps might help you understand how much you need and what form you might need it in.

    http://www.seekinghealth.com/media/MTHFR-Introduction-Basic.pdf
     
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  8. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Dr. Ben Lynch starts with B12 for one week, then gradually adds methylfolate:

    I can't say if Dr. Ben Lynch's protocol is safer or more effective than any other, but at least he is a licensed and credentialed health practitioner (naturopath) whose specialty is treating patients with MTHFR mutations.

    I found one article on how he treats C677T mutations and it includes a stepwise protocol about how to use methylB12 and methylfolate - how much to use, when and how to take them, etc.

    http://mthfr.net/mthfr-c677t-mutation-basic-protocol/2012/02/24/

    If you scroll down to Part II on that page, the first sentence says:
    Methylfolate Recommendations for those homozygous for the C677T MTHFR Mutation

    From there forward you can see the stepwise recommendations. Dr. Lynch has his own line of supplements, but you can certainly use your own.

    What we refer to as "startup" at Phoenix Rising, he calls "detox." I don't know which term is more accurate, but they seem to be the same constellation of symptoms.
     
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  9. ahmo

    ahmo Senior Member

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    @picante I used mg oil for about a year, but needed too much, so switched to mg citrate, and finally to mg malate, which my body prefers. I tend to need 600mg AM/PM, from 3x 1300mg malate tabs. I questioned it re your neck, myofascial pain, but when I reread your post, looks like you resolved that w/ K+.:balanced:
     
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  10. picante

    picante Senior Member

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    Thanks, ahmo, I have resolved the neck spasms several times now with more K, but the myofascial pain is a separate thing -- it's the return of an old symptom, and I'm wondering if that's an indication of needing more mB12/AdB12 (or more Mg, as you suggested). In the Guide to Freddd's protocol, I've found the symptom lists (page 8) to be invaluable! That's how I knew when I went into mfolate deficiency and when I started having potassium deficiency. He says they are both inevitable. After my MTHFR results came, I tried starting with just mB12, as Dr. Lynch and others suggest. I tried 3 different brands, and always had problems after a few days, and had to quit.

    My tiny bit of experience with using mfolate and K to control these symptoms tells me that Freddd has hit the nail on the head. He may not be a Doc, but as a systems analyst, he has the kind of brain that can put all the pieces together. (Well, maybe not all of them, but he has drawn a much bigger picture than anyone else.) He insists that these are not "detoxification" symptoms; they are signs that the mB12 is doing its job.

    What's still unclear to me is: HOW do I know when to add more of the active B12s? He says that people often swing between folate deficiency and B12 deficiency (my question #5 above). But I don't see any list of B12 deficiency symptoms, so do I just assume that they are simply any of my symptoms of the last 22 years??? (My CFS/myofascial pain/MCS was triggered by reactivated EBV when I was 35.)

    Anyone, please chime in if you know something about this.
     
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  11. ahmo

    ahmo Senior Member

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    I don't have a clear answer. The reason I compiled Fred's words into a guide is because my memory is so porous, I can't keep any of this info in my mind. I use self-testing for monitoring my dosages. And I think you're probably right on re your ongoing symptoms. I also added B12 when the folate pushed me into reactions, generally histaminic.

    That said, I'm currently in a similar position of trying to work out levels. Since I switched to taking folate sublingual instead of swallowing, I'm still adjusting it downward, based on adrenal symptoms. It's become clear to me that excess folate pushes my adrenals. And now I'll need to begin also adjusting B12 down, though I'm unsure by how much. I'll use self-testing, monitoring my symptoms. I'm also trying to initiate inhaled B12 (see thread with inhalation in title), which will < the amount of B12 needed, but my device isn't cooperating, so this is a work in progress.
     
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  12. sueami

    sueami Senior Member

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    This is very interesting to me, Ahmo. I had a huge crash in Sept. which my functional med doc said was adrenal in nature. I'm on some adrenal supporting supps now. At the time I figured it was caused by unprocessed fear and worry around my husband losing his primary employment. Now I wonder if higher folate levels might have contributed. I think I was about 3400-3200 mcg a day at that point. Now I'm down to 1600, and taking 800-1600 folinic acid a day.

    Good luck with your inhalation trials. I'm also quite intrigued by that possibility.
     
  13. ahmo

    ahmo Senior Member

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    @sueami I first became aware of this adrenal connection when I was on very high folate. I kept running into deficiency, so raising it. And then I developed adrenal signs and symptoms, especially in my face, but I think also adrenal pains. that's when I realized I had to cut out my green veggies, and went into a massive detox. Since then it's become very evident that my adrenals are extremely sensitive to folate. :meh:
     
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  14. whodathunkit

    whodathunkit Senior Member

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    Great thread. You guys are on a roll! :D
     
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  15. picante

    picante Senior Member

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    I've had adrenal misregulation, too. Mainly it's my cortisol going up during exercise, and then staying too high for up to 2 days. (I did a saliva test once on the day after a mild cross-country ski outing.) I call it cortisol overshoot. I don't feel wired at all, though -- just really out of it and unable to process or function. I take lots of Seriphos when it happens.

    I'll be on the lookout for the m-folate-adrenal connection; thanks for the advance warning!
     
  16. picante

    picante Senior Member

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    @ahmo, your compilation/Guide is invaluable to me. This stuff is too complex to retain easily.

    I dream of having an online diagram or flow chart of Freddd's protocol that we could use. And when you put your cursor on "potassium deficiency", the long list of symptoms appears on-screen. Likewise for "methylfolate deficiency" and various other functional deficiencies that tend to come up. Then some links to explanations of particular concepts, like "methyl block".

    I'm a translator, and therefore a compulsive editor. When I read Freddd's explanations, I'm constantly aware of where the commas need to be inserted, which sentences are fragments, and which ones would be vastly easier to read with just a little tweak. So I'll volunteer myself for that job, LOL!

    This translation by me was recently published: http://books.google.com/books/about/The_Semiotic_Challenge_of_Scientific_Ima.html?id=UAicoAEACAAJ
     
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  17. picante

    picante Senior Member

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  18. ahmo

    ahmo Senior Member

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    @picante Any time you want to move this thing into the next stage, let me know!:woot: I have a list of a few revisions, but I've just not had the energy to return to it. I'd hoped at the outset to have it set up like the forum Help wiki, so clicking would go to the section directly. I'd entered it into a blog page, hoping I could do that, but all I ended up with are the non-functioning marks for making quotes.

    your translation...so you understand science as well???:nerd::thumbsup:
     
  19. picante

    picante Senior Member

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    @ahmo, my part in "this thing" looks like it should wait until after New Year's. I've got to do some Continuing Ed stuff to keep my ATA certification, and want to get further into the active B12 protocol.

    You have something already on a blog page? I'll look for that.

    I wonder if it would be a good idea to recruit someone who's good at algorithms to do a flow chart. They would have to be very familiar with the protocol. Or it could be a group effort. I'm not sure what the legal ramifications are of presenting a clear protocol in that form, and we should probably ask the board of PR about that. But I do think that there are plenty of people who would try the active B12 protocol if it didn't entail so much floundering about on discussion threads. Then that would generate more data on people's experience with it.

    As for science, my education is in French (BA), Linguistics (MA) and Translation (MA). That last degree involved a lot of work with terminology, since most translation work these days is "technical". My thesis translation was on sea level rise. I have a non-specialist's understanding of some aspects of physics and geology, specific energy technologies, and a few other fields. The book I translated was on semiotics, which is more of a social science.

    This topic seems like it ought to be a separate thread for members, doesn't it? You've been here longer than I have. Do you want to start a discussion?
     
  20. ahmo

    ahmo Senior Member

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