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Going back to address CBS after starting with methylation cycle ...

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Fairuza, Jan 11, 2014.

  1. Fairuza

    Fairuza

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    Heavy brain fog here ...

    Before discovering my mutations, I had been supplementing with a B-12 complex with folic acid and Vitamin D. Did Genetic Genie (did not read thoroughly enough) and started my own protocol. Switched to methycobalamin (Jarrow 5000mcg sublinguals) and metafolin (Solgar 800mcg). Added zinc, glutathione, and biotin. Bad idea to start out at 800mcg folate -- easily frustrated, angry -- so cut back to 400 and felt ok. Noticed that my memory suddenly got horrible, so I quickly re-read stuff and spotted the CBS mutation and the "don't take glutathione" and immediately stopped. I was only on it for 2 weeks maybe. The memory still sucks. So I start researching, find this forum and want to try this all over again but I have a few questions ...

    I must be tolerating methyl donors because other than the memory issue, nothing seems changed. Perhaps a slight increase in energy is all I've noticed. Maybe my dosage amounts are off?

    As far as CBS, I don't have any known intolerance to foods but I tested myself anyway with the sulfate strips and seem to be testing between 600-800 so I'm assuming there's at least a slight issue going on? I'm ready to start on the low thiol diet and see if that helps and I just bought a bunch more supplements but I feel like every time I add something to the list, I find something else I'm missing. Now I've thoroughly confused myself and I'm almost afraid to start. My homocysteine is on the low side (4.5). The low thiol diet is going to be horrible for me since I'm a vegetarian too ... not looking forward to it.

    My other problem is ... I cannot swallow pills. Even the tiniest of tiny ones can cause dysphagia and it'll come up. I'm sure it would be easier to order the supplements off the protocol lists but I feel like my swallowing issue makes me have to address everything separately to find what I can take.

    So ...

    Question #1 is ... since I've already been taking methyl B-12 and folate -- do I stop altogether when addressing CBS or lower the dosages?

    Question #2 is ... here's what I've added to my protocol (but haven't started) ... what am I missing that's crucial (and can I chew/crush it if no other form available)? The more I read, the more I'm confusing myself.

    P5P (B6 - 50mg)
    Mo-zyme (molybdenum - 50mcg)
    D-Ribose (1500mg)
    Magnesium Citrate (315mg)
    non-GMO soy lecithin powder (I have demyelinating brain lesions)

    I also take 100mcg levothyroxine for Hashimoto's/hypothyroidism
    81mg baby aspirin
    30 mg Vyvanse (perks me up nicely)

    I bought Yucca powder and activated charcoal ...

    Question #3: What's ok to take together or is anything specifically needed to be taken with food or away from other supplements? I know to take the B's together but unsure of the rest.

    I've read Yasko, I've read Heartfixer, Freddd & Rich's protocols, and as much on here as I can ... and I am probably still doing this ass backwards but especially with my current cognitive issues ... logic is not my friend right now. Input is much appreciated and thank you :)
  2. ahmo

    ahmo Senior Member

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    Northcoast NSW, Australia
    @Fairuza,
    Freddd's experience, and those of others on Freddd's Protocol, is that Jarrow's is no longer as effective as it once was. Now Enzymatic Therapies B12 Infusion is the top rated B12. It's only 1mg, so you'll have to do multiples. Good you stopped glutathione and decreased folate. Not too much brain fog to get these things right!

    I've been taking my powdered supps (mostly aminos, potassium, Vit C, CA, Magnesium oil...) via footbaths. I'd already been doing footbaths as detox, w/ bicarb, clay, charcoal. When I found myself needing a heap of potassium (to meet my increased folate dosage; a temporary K+ deficiency), I started adding it as well, then my aminos. When I had B complex capsules that were way too high, I dumped a small amt into the footbath. This method is working great for me. If you have tablets instead of capsules, you can grind them up and add, tho they might be harder to dissolve.

    I wouldn't lower dosage or stop. If you're taking other B's, then they DO contribute sulfur. And Freddd has found that really low dose B complex is the way to go. So I take approx 12 mg B complex AM and midday. I say approx because I've chosen a B that has all the right things, but is too high, and split it. (Swanson's Ultra Activated B Complex; Here's Freddd re B vitamins http://forums.phoenixrising.me/index.php?threads/getting-back-to-balance.24134/ July 2013 Fred re role of B vitamins)

    Freddd talks about the Deadlock Quartet: the 4 ingredients that are necessary to getting methylation going, each of which can prevent healing if missing. M folate, MB12, both of which hyou have. Also, AdenoB12, best brand Anabol Naturals. This is 10mg capsule. Like the MB12, this is taken between gum and lip, not under tongue, for slower dissolving. Currently Freddd suggests 1:1 of MB12 and AdB12.

    And the final component, L Carnitine Fumarate (LCF). Some people do well on Acetyl-L Carnitine (ALCAR), but I, and many, find it doesn't do anything. Best brands are Dr's Best and Source Naturals. Comes in capsules :)

    I've read that yucca can be hard on liver. SORRY, WRONG INFO SEE CORRECTION BELOW
    I found yucca tincture tastes yucky.I've switched from yucca to butyrate + ornithine (amino, powder)

    Levothyroxine might work fine for you. I'd been on it for decades, and only in 2011 switched to T3 only. This made a huge difference, stabilized me after 8 years flailing w/ ME/CFS. I can now see that I spent most of my life hypothyroid, while using thyroxine. I don't want to make things even more complicated for you, but here are some references for thyroid:
    http://thyroid.about.com/od/hypothy...ptimal-Treatment-Hypothyroidism-John-Lowe.htm
    http://www.stopthethyroidmadness.com/
    http://www.thyroidscience.com/

    I learned recently to take the Bs away from food and oil-based supps; before I'd understood that it was best with foods. A woman treating her child for lyme/autism passed on this info from the expert directing treatment. Here are the other bits of info I've collected:
    Folate away from K+, Fe, C
    Zinc away from manganese
    P5P away from Zinc

    Re CBS, my sticks have levels: <200, >400, >800, >1200, >1600. I've always, and only, gotten readings of >400. I started testing some time after I'd already been low thiol. But I had physical changes when I lowered sulfur/thiol: facial eczema clearing, joints releasing or no longer creaking. I can't imagine how you're going to do this as a vegetarian. I was a 30 year-long veggie until I started the GAPS diet 2 years ago. the only veggies I can use now are cooked zucchini, and lettuce, carrot, and red capsicum in my juice, a shitaki mushroom every other day. Between my sulfur and histamine intolerances, there's a world of veggies I can't go near.


    Very good info for you re MTHFR at Dr Ben Lynch's MTHFR.net, altho for me, Freddd's Protocol has been The Best, and has really shifted my condition. Here phoenixrising member howirecovered has created an excellent FAQ format with much of Freddd's info: http://howirecovered.com/active-b12-therapy-faq/

    It might be worthwhile taking the questionnaire for pyroluria at the following link. I uncovered pyroluria before I got to the MTHFR and CBS defects. I think this condition, documented before genetic testing, might well be found in many of us. This is why I get mixed up now re mineral supplementation. Pyroluria needs the P5P form of B6, methylfolate, also larger than typical zinc, selenium, molybdenum, manganese, + magnesium. http://www.hputest.nl/evraag.htm

    OK, I think that's all I can do for now. I've also used heartfixer and Yasko, use several of Yasko's RNA's. Best to you, ahmo
    Last edited: Jan 17, 2014
    WoolPippi and Fairuza like this.
  3. helen1

    helen1 Senior Member

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    B.C., Canada
    @ahmo,
    B vitamins away from food and oil based supplements, I've never seen that anywhere else, wish I'd known sooner. Thanks for that!
    Any idea why?
  4. ahmo

    ahmo Senior Member

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    @helen1, I'm glad you asked, because I later thought I should clarify this. Not so much about foods as about oil. According to this info, the combination creates something soap-like, so not well dissolved. This comes from either Dr.Kamsteeg or Dr. Klinghardt, working w/ pyroluria, autism, Lyme. I can't keep the 2 Drs separate in my mind. In any case, I respect the woman who shared the info, know she's been following protocols v carefully for her autistic twins, so I changed my own practice. I now take my B complex + P5P early AM w/ folate, B12, and then at midday, as Freddd recommends split doses....I see you've got MAO++, too. I initially just understood it as the "psychopath gene" (from an excellent TED talk.) Until I understood it as the Histamine gene. :confused:...or should that be, :mad:...At least it's taken me to the source of the problem.:rolleyes: cheers, ahmo
    helen1 likes this.
  5. ahmo

    ahmo Senior Member

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    Re my comments on Yucca and liver: I've gotten mixed up. My recent discovery was that Butterbur, which I was taking for histamines, is hard on liver. Not Yucca, which I stopped because of personal dislike of taste of tincture, and avoidance of starches, it's other form. My Bad. Sorry.:redface:ahmo
  6. Fairuza

    Fairuza

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    Well you answered a lot! I totally appreciate it :D I've gone through Heartfixer and Yasko, I've got notebooks full of notes, it's just getting myself to fully understand it and then find a protocol. Since my biggest complaints these days are neurological, I wish I could figure out why I had the sudden dramatic drop in my memory a few months ago. I feel like it has to be something I did with my protocol -- but what? Was a month's worth of glutathione the culprit? Did overmethylating cause permanent damage? It scares me because I feel like it's sudden Alzheimer's. I feel it's more debilitating to me than the fatigue. Is there something about the protocol I'm on now contributing to the problem? That's why I wondered if my B12 was maybe too high and my folate maybe not high enough? This all makes me feel so dumb :/
  7. Fairuza

    Fairuza

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    Okay as you can see I have no idea how to properly deal with quoting. What did I do wrong? Lol. I highlighted the text then hit the quote button each time and now it looks bizarre ... oh brain! My apologies to you reading this mess I made!
  8. ahmo

    ahmo Senior Member

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    Hit the Quote symbol. the cursor will be flashing in between the opening and closing bracketed quotes, then you type in the space following/below the second 'quote' ....Well, I'm now in edit mode, because my post looks exactly like your's. Don't know if there's a system-wide glitch, or what's the deal...when I saved changes it was formatted correctly...I see....somehow the first 'quote'sign/word got separated from the last one, which appeared at the end of my post, so the whole page initially posted like your's did...can't explain it better.

    That makes sense. If you search around, you'll find Freddd's posts about this. He, and others, noted a significant change, I think last year, in the function of the Jarrow. He would have been using the 5000mcg. So there must be something re absorption, not just quantity. I can't answer that for you more specifically right now, I can possibly search my notes tomorrow.

    Yes, it's brilliant. I'm using the same amounts that I was dissolving and drinking, of aminos, K+, TMG... I'm very sensitive to slight changes, would absolutely know if I wasn't getting enough GABA, K+, magnesium. Footbaths are used a lot in the GAPS community as an alternate to full body bath for detoxxing. And I saw references to taking other things, like oregano oil, by rubbing on soles of feet, a protocol of autism expert Dr. Klinghardt. Someone on another thread here a couple days ago mentioned them.

    I also take extra biotin and P5P. I had been taking 2 P5P (33 or 38mg), but lowered it to 1 around the same time I lowered all my B's. I've found in the last couple weeks of doing coffee enemas that I self-test for more biotin when I'm detoxxing. Don't know why...it's a choline precursor, I think...

    Yes, the tincture is nasty. The powder might be like maca or ashwaganda, I don't know, I say that because that's how it looks in the pictures. You might try searching for people's experience. Ornithine is tasteless. I'm avoiding all starches on GAPS diet.

    I think it might be more the other way around in this case. I don't think, IMO, you can get methylation going without enough thyroid. However, I've been able to lower my T3 dosage over the last year from 60 to 40mcg, presumably because my methylation is better.

    For me it works to take my B, folate, thyroid, probiotic early AM, then put my B12 (methyl and adeno) into my mouth. I'm an early riser, so this gives me plenty time to digest these in the couple hours before I eat. I think it's generally understood that empty stomach = 1 hour before or 2 hours after meals. These days, I'm timing different supps all day, it seems. :ill:

    I had no idea sulfur was a problem. But in retrospect, I had significant excitotoxic reactions to SAMe and ALA a few years back. I tried a low dose ALA yesterday, and it was the same:Bzzzzzzzzzzzz! When I'd been on the GAPS diet 6 months, I was having severe facial eczema. I stopped all histamines, and cleared 50%, overnight. Then, because I'd been reading the GAPS forum posts, I stopped sulfur. Again, overnight, the remainder of my outbreak cleared. I never put any of those foods back. In fact, in the scheme of my life, I never realized digestion was a problem. Even though I had a permanently round hard belly. I was more concerned by my connective tissue inflammations and irritability.

    I took the questionnaire when someone posted it on GAPS forum. Same with me, some things that had been problems in the past. But as time went on and a forum member kept asking different commenters if they'd tested for it, and I saw what sort of issues she was addressing, I retook the test, more carefully. Then I ranked not terribly high, but within the positive zone. So I started supplementing for it, as I'd forgotten to ask my GP to test for it. 5 days after begging the supps, my head space had totally changed. That was the moment when this health quest shifted from a nearly unbearable burden, into an 'interesting challenge'. Just like that, lying in bed, my whole interiority had shifted. This included minerals and p5p, but I now think the crucial ingredient was TMG, a methyl donor.

    Freddd and a few others did a trial of glutathione a few years back. Some had negative experiences, but I don't know of what sort. Your so-called overmethylation was just a short while, I can't imagine it caused permanent damage. You might write directly to Freddd...called a Conversation, accessed I think from your "alert" tab. I have to read Freddd's lists over and over again to work out what my symptoms have meant. I doubt this is sudden onset Alzheimers, I don't think that's the way it works. maybe you're being facetious?? Freddd's got the most sophisticated, and ultimately most simple, understanding of the B12/folate/ situation that I've seen. I can't remember what symptoms he links to AdenoB12, and L-Carnitine Fumarate, the other 2 members of the Deadlock Quartet. Here's the intro to a very recent post of his:

    http://forums.phoenixrising.me/inde...uartet-and-other-nutrients.27482/#post-421506

    And this is an incredibly interesting vid re brain inflammation I listened to today. The presenter works with mast cells, which another pr forum asks, "Could ME/CFS be a mast cell disorder?" Huge similarities here w/ autism. this talk is positing autism as an allergic condition in the brain. He's referring to brain fog and related neurological symptoms. https://www.youtube.com/watch?feature=player_detailpage&v=9QbZp3WcC1Q

    OK, cheers...re feeling so dumb....I've had many anatomy and physiology courses, but without a scientist brain. We're all having to become experts in this incredibly complex area, one of the main cycles running our bodies. Who knew anything about methylation before we stumbled into this world???:nerd: ahmo[/quote]
    Last edited: Jan 21, 2014
    helen1 likes this.
  9. ahmo

    ahmo Senior Member

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    Here's a comment from Freddd re glutathione:
    http://forums.phoenixrising.me/index.php?threads/glutathione-b12-and-lithium.27672/#post-422078
  10. caledonia

    caledonia

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    Cincinnati, OH, USA
    In the latest Ben Lynch video (linked in my signature) he says you must take glutathione with NAD (a form of niacin), otherwise you'll be making the bad oxidized glutathione and not the good reduced glutathione.

    I don't think you have a CBS problem.

    In general, your starting doses are very high. Please read the Start Low and Go Slow document linked in my signature.
  11. Freddd

    Freddd Senior Member

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    If Jarrow's is no longer as effective as it once was, wouldn't it still be cheaper to double up on Jarrow rather than have to take 5x the amount of the Enzymatic Therapies B 12 Infusion since I'm taking 5000mcg already.

    That makes sense. If you search around, you'll find Freddd's posts about this. He, and others, noted a significant change, I think last year, in the function of the Jarrow. He would have been using the 5000mcg. So there must be something re absorption, not just quantity. I can't answer that for you more specifically right now, I can possibly search my notes tomorrow.

    The problem with MeCbl from various brands, not just Jarrow, and a large percentage of compounding pharmacy injectable MeCbl is a qualitative problem, not an absorption problem. There are multiple variations o MeCbl depending upon the micro-organism used in the process. They are minor differences in this very large molecule of over 1300 molecular mass of some of the components. These differences are "unmarked" and may have slight differences in molecular mass and arrangements of some atoms. They affect how well the MeCbl works in some ways. No amount of these other types replace even 1mg of Enzymatic Therapy. I can tell the difference with the first injection or two.

    Well you answered a lot! I totally appreciate it :D I've gone through Heartfixer and Yasko, I've got notebooks full of notes, it's just getting myself to fully understand it and then find a protocol. Since my biggest complaints these days are neurological, I wish I could figure out why I had the sudden dramatic drop in my memory a few months ago. I feel like it has to be something I did with my protocol -- but what? Was a month's worth of glutathione the culprit? Did overmethylating cause permanent damage? It scares me because I feel like it's sudden Alzheimer's. I feel it's more debilitating to me than the fatigue. Is there something about the protocol I'm on now contributing to the problem? That's why I wondered if my B12 was maybe too high and my folate maybe not high enough? This all makes me feel so dumb

    I suffered Subacute Combined Degeneration with the N=10 glutathione trial I and 9 others did. 100% of the participants had at least 6 months or more of effective Active B12/folate protocol. I was taking precursors, l-glutamine and NAC. A couple of others were taking IV infusions of glutathione. A couple were using un-denatured whey. The rest were taking variations of the precursors I was taking as either separates or part of commercial formulas. 100%, all ten, had major return of symptoms after the visible clearance of b12 (in urine) starting in hours and worsening of Sub Acute Combined Degeneration symptoms, that is brain and cord damage, becoming very evident at 6 weeks when we all decided that we could not go on. The symptoms were those commonly called "glutathione detox" and "NAC detox" which are very common.


    Many people who have no change appear to already be in methylblock so there are no new symptoms or return of previous symptoms since they are all still active since they never got out of methyltrap.


    The first day or two I had a reduction of pain. Turns out that I had the reduction of some kinds of pain because the nerves went to numb instead of painful. I have in 5 years or so now not reversed all of the increased damage. The damage done in 6 weeks, and was becoming apparent by 4 weeks if only we had known to stop earlier, appears to be permanent.


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