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Folate Issues & Methylation

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by madietodd, Jan 24, 2012.

  1. madietodd

    madietodd Senior Member

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    I think I'm getting benefit from the tiny dose of Mb12, but it's very hard to split the 1,000mcg tablets into eights (twice a day). I end up with crumbs, which dissolve quickly.

    I take each dose with 1 drop Hb12 (1,000mcg/drop). I'm thinking of dropping the Hb12 and upping the Mb12 to 1/4 tab doses. Anybody got experience with this, or thought about it?
  2. topaz

    topaz Senior Member

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    Madie

    That seems a very small dose of Mb12. Is this because you are starting slow and/or titrating? I thought a 5000mcg Mb12 was starting slow on Freddd's protocol.

    Notwithstanding the above, I am not only pleased that you are getting benefit but that you are seeing it! Hope is half the battle sometimes.

    Best regards
  3. madietodd

    madietodd Senior Member

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    Hi, Topaz.

    The 2000mcg Hb12 is the total amount called for in the SMP. Because the SMP didn't work for me, but I'm worried about the startup effects of the active protocol, I've been experimenting with this hybrid.

    I decided to try adding some Mb12 a few days ago, and Freddd recommended I start at this dose, while keeping the Hb12.

    I had to cut up a new pill last night anyway, so I'll likely stay at this dose for another 4 days and see what happens.

    When I said "dropping" the HB12, I meant lowering, not stopping, BTW.
  4. soulfeast

    soulfeast Senior Member

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    I'm reporting back.. I do not think this was potassium related to any overriding extent. I crashed with a huge and long lasting catecholamine dump on 2400mcg of metafolin and 15mgs of MB12. I also think I had a porphyrin dump as well.. I do not think the reddish urine was not Mb12 being excreted. Ive had this in the past when not on this protocol and after takign large doses of CSM which also put me in an adrenaline dumping stage that lasted for weeks and no, I dont think potassium would have solved the problem, though might have helped with some of the symptoms. I think it was detox from the CSM. Which is what it does.

    So I do think the metafolin and MB12 also triggered a detox due esp since I do thihnk I did have a porphyrin dump. I also don't think my symptoms were just low potassium. I dont think this is all so black and white that ALL reactions are low potassium or ALL reactions are detox.

    I do agree with Yasko that folks with a double homozygous COMT status and homozygous MAO-A are potentially going to have issue with excess methyl donors creating a catecholamine upsurge then problems getting rid of it.. I have hyperadrenergic dysautonomia.. its a problem.

    SO for me, the issue is how much of the methyls I can handle and which I need to focus on more.

    I have a homozygous MTR and several hertero MTRRs which mean I use B12 inefficiently and do not recycle well.. I am wondering if this is why I have craved Mb12 over Hb12.

    I am trying to pay attention to how my body reacts when I add back in my protein bar that has whey in it.. I did this yesterday and did experience what could be (or not) MB12 or possibly FA deficiency symptoms (dont know the diff in the symptoms).. creepy nerves feeling, inflammed spine feeling.. I dont know if this is coincidence with something else or I am one who cannot metabolize glutathionylcobalamin. (is that the premise?... the cells close up once a b12 of any form has entered and if it cant metabolize that form, you are in trouble?)

    Thanks,

    Robin
  5. Rosebud Dairy

    Rosebud Dairy Senior Member

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    I did have to switch from CSM because of the sweeteners........I don't do well on artificial sweeteners these days. I stick to Welchol, as that merely gives me gut trouble.

    I seem to be thinking that if I take Mb12 and Methylfolate plus potassium, etc, then I am probably in a full methylation over-ride of the natural cycle, and then I mostly feel okay. but if I drop off of full override, then I start slipping. I definitely have to have the progesterone.......for whatever reason. I am irrational without it. I am trying to heal neuropathy, and know that I have a single C677T, and some Shoemaker HLA mold stuff.

    Having said that, I don't know my full Yasko genetics, but would like to at some point. If you have an MTHFR deficiency, then you are a "metals magnet," of sorts, right? If it is in you, then it may clear at some point when methylation and other nutrients are there and running.

    For now, I am trying to keep my own protocol as spare as I can, so to see how my body changes as I change my protocol. I noted a MAJOR PMS funk but staying on protocol, staying careful with diet, and remembering my progesterone got me back on track quickly.

    Clearing metals and doing larger doses of CSM can really kick your tush......know your genetics and go gently so as not to crash out-----but HOW?? I just haven't figured all that out yet. Maybe metals first, since that may be what your body wants to ditch first.
  6. topaz

    topaz Senior Member

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    Hi Soulfeast

    What is a catecholamine dump and how do you know you have this?

    thank you
  7. topaz

    topaz Senior Member

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    Hi Soulfeast

    What is a catecholamine dump and how do you know you have this?

    thank you
  8. topaz

    topaz Senior Member

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    Madietodd

    I like to use USDA. It is the feed into nearly all other nutrient/food databases.

    For ginger; http://ndb.nal.usda.gov/ndb/foods/s...t=&count=&max=25&offset=&sort=&qlookup=ginger

    To look up any other food, by food item: http://ndb.nal.usda.gov/ndb/foods/list (this has never been the best presented database but the data is good)
  9. topaz

    topaz Senior Member

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    It was your experience Madie that made me try increasing potassium in the absence of any other listed potassium deficiency symptoms.

    Sadly, it only lasted one day -the day following the increase in potassium (I did it for 4 days with a break and a blood test today). Placebo? Other effect? Increase the potassium some more?

    Maybe the depression/deep sadness is a detox/start up symptom as I have seen it listed somewhere (a list of Rich's perhaps)?

    I wish the brain fog would lift as it would be a sign that methylation is working.
  10. soulfeast

    soulfeast Senior Member

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    COMT is related to inability to clear adrenaline and dopamine. I know I had adrenaline surges like crazy, possibly dopamine was well.. I don't know how much COMT snps can contribute to creating more adrenaline but clearing is supposed to be much more difficult. So I was "dumping" at least adrenaline and not clearing it well.. lasted over a week. It can feel like you are on a roller coaster and you feel the surges of adrenaline in your gut.. it feels like it is flooding my gut. Beta blocker has to be upped at this time and klonapin upped to calm my system down which only works temporarily.. my body seems to get stuck in producing adrenaline and cant clear it well.

    My sister was diagnosed with severe dysautonomia and had this for years in extreme manifestation and was able to see one of the top MDs treating dysautonomia before he retired. We share notes and that helps me identify what's going on. I explained my symptoms and she said catecholamines. She was tested for the tumor that would cause excessive "dumping" but scans not able to view it if it was there.. I think the tumors can be very small.. She had high catecholamine levels when tested.

    She also had high porphryrins as well and diagnosed with porphyria at Mayo then saw one of the top specialists in US and he ruled this out. I saw him this year and he also ruled out primary porphyria. I know porphyrins result from metals excreting. I don't think my urine was that color from the MB12 since this happened.. same scenerio.. adrenaline surges like crazy for days and days then urine is reddish in am. My skin turned yellowish the last time this happened and it was when using CSM 4 times a day.

  11. soulfeast

    soulfeast Senior Member

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    Im guessing a metal magnet, Rosebud, would be true in a sense? I did several rounds of testing with yasko in past and no significant metal dumps but no adrenaline surges with reddish urine either at that time. I dont know.. I just dont think this was "start up" from the active b12 protocol. Just doesnt make sense it would be. ??

    I am backing off to where I was at 400-800mcg metafolin and 5-10 methyl b12. I dont understand why yasko and rich say low doses adn this works and then freddd and others its high doses.. ?? I think yakso does recommend alot of b12 for some (MTR, MTRR which I have) but not the methylfolate..why?? and why is so much needed by some?

    MTR and MTRR use b12 fast (my version from my memory!) and do not recycle well.. so I can see needing larger doses of b12.. MTHFr.. maybe MTHFD1 (deplin refers to on its site at THF phase) would require alot of methyTHF? Confused!

    CSM i get compounded with no additives but it makes my gut inflame, which I think leads to adrenaline dumps, not sure thats the csm or the toxins going through causing that.

  12. madietodd

    madietodd Senior Member

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    Thanks, Topaz - good find. I've added the site to my list.

    I meant that ginger doesn't have a very high value for potassium, given the level of our needs. I wondered what form of ginger enabled L'engle to eat lots of it.

    Now that I see how much potassium is in my cocoa, I'm upping my potassium tablets to see if that lowers the craving for chocolate + milk.
  13. madietodd

    madietodd Senior Member

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    Update

    One week ago, I started on 1/4 tab a day, split dose, of Enyzmatic Therapy B12 Infusion. That's a 1,000mcg tablet of Mb12.

    Nothing much happened until day 3, when I got a rush of energy. Day 5 was beautiful, and I gardened - raking, pulling wisteria vines. Please don't yell at me - it was really fun. Of course the next morning I was pretty crashed. But I took my morning potassium and the aches and pains from raking disappeared!

    I had a party to go to that night, and happily my energy was stable and pretty high by the time I met my ride. Half way through, I got that heavy-slow feeling....and took the potassium I'd brought. And then I was fine again. I'm finding this very strange, but also sort of amazing. I got home at 11 that night, feeling fine.

    This peak-crash cycle continues, and runs pretty fast. Yesterday (the day after the party) I spent the morning in pjs on the couch, very tired,headachy, and stupid-brained. In the afternoon my brain felt hot, electrical, like it was burning. Potassium didn't help, so I laid down and meditated - first time in forever - and after a half hour I felt cool and much much better. And then just like the day before, my energy returned.

    I've been dealing with tension headaches and nausea every day, which is new for me. Both usually hit as soon as I get out of bed, and dissipate sometime in the morning. Potassium helps, but not 100%.

    I'm describing how I feel loosely, because it's very up and down. Overall, the benefits physically are matched by improved cognition across the board (memory, quickness, sociability, clarity), and both are lost again together. The peaks are higher than my normal best days, and the lows are lower than my typical worst, but not terrifying.

    For me, potassium is absolutely a charm. I've found blood tests as far back as 1996 showing my potassium levels ranging from 3.7 - 3.9, which in this group is considered low. I'm still eating fruit/vegetables only once a day, and I get an additional 1500mg in potassium tablets, and 1800mg in cocoa.

    EDIT: Re. food folates + solgar: I had 4 solgar + chicken with cooked onions/peppers (low folate veggies) and corn/flax chips (folates) for lunch. I was tired within 20 minutes of eating, and am still sleepy and fuzzy 4 hours later. My physical energy is OK; it only hit my brain. So I'm still figuring this out.
  14. Dreambirdie

    Dreambirdie work in progress

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    Hi Robin--

    Much of this is over my head, so I have a lot of questions about it.

    How do you know if you're having a catecholamine dump and/or a porphyrin dump? How do these relate to detox, particularly of heavy metals? Also...what does CSM stand for?


    I agree with you about low potassium not always being the issue. It has not had a dramatic effect on me to up my doses of it when I am having an intense reaction.

    I have not done the Yasko tests, so I don't know where I stand with any of that. I am curious how much they cost at this point. I have no insurance and would have to pay out of pocket. But maybe it would be worth it to help me get a handle on how to work with these protocols.

    All the B12s have a cumulative effect on me.
    I had a strong reaction to a 2400 mcg dose of metafolin (with 2000 mcg HB12) last week. My nervous system went into toxic overdrive for a couple days. So I used glutathione to neutralize my reaction, and help clear the toxicity that came up with it, which helped considerably. Then I went back to my usual doses of of the SMP supps, but I think my cells were still so saturated with the prior large dose, (according to Rich) that the small dose threw me into a tailspin again for several days--very wired, trouble with sleep and anxiety. This happens to me when the B12's reach a certain level in my body.

    When I began to use the SMP supps regularly last October (prior to that I had only taken smidges a couple times/week), I did not feel much of an effect at all for the first 4 weeks. Then on week 5, I began to feel a lot of brain agitation symptoms and my insomnia got worse, but I didn't figure they were from the SMP, until someone here suggested it to me.

    I have had similar reactions to taking the MB12, which I have done only for a 2 weeks at most, as that's all I could handle, and only in doses of up to 500 mcg.

    I have an extremely sensitive nervous system, and on top of that I had a severe injury to it when I was struck by lightning in 1979, just 2 years AFTER my initial onset of CFS in 1977. So working with supps that have such a direct effect on my brain and nerves is really challenging. And ON TOP OF THAT there are the heavy metals, which repeatedly show up in my hair, my urine, and my poop, each time I have had those tested for it. Arsenic, uranium, lead, and thallium have taken turns being in the high range. I have no idea why I still have these in my body after 35 years of all organic food and filtered water, and many detox supps along the way. But there they are, reeking their usual havoc. How to clear them without torturing my body has been one of the big questions for me on this journey.
  15. madietodd

    madietodd Senior Member

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    Topaz, this happened to me last week, before I added the Mb12. I was doing all great and then suddenly....not. Freddd thought I'd gotten things moving, and then hit up against my next limiting factor. I don't understand the chemistry, but this idea makes sense to me. So he suggested trying the next thing (Mb12), NOT that I should continue upping the potassium.

    So maybe this just happened to you. You got the potassium figured out, your body said "Rejoice!" and then hit a ceiling somewhere else.

    I will admit to being confused about symptom lists. I think there's overlap, and of course also we're different. I haven't had a whole lot of luck looking at lists to figure out where the limitation is. For me, Freddd has been incredibly useful and helpful in seeing my patterns and suggesting ideas. Of course then it's up to me to figure out what feels like a good fit, and to try new things at a pace that feels right for me.
  16. soulfeast

    soulfeast Senior Member

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    Hi DreamBirdie,

    I am linking to another post I made (at least the the page, and my post is at the bottom) which I hope helps explain my reasoning for the catecholamine and porphyrins angle:

    http://forums.phoenixrising.me/showthread.php?15865-Folate-Issues-amp-Methylation/page15

    Speciality labs will test for porphyrins when testing for metals.. I dont know which labs (Doctors Data or Metametrix, etc) But there is an association with porphyrin in urine and heavy metals. So I am making an "educated" guess... my urine was a strange reddish color and its happened in the past with an adrenaline crash.

    CSM is cholestyramine which Shoemaker prescribes for mold toxin illness.

    www.survivingmold.com

    thats intereting about the cumnulative effect of MB12.. so it can accumulate??? and Freddd says metafolin has a 3 hour half life??? Yet yasko and Rich don't say take in divided doses throughout day.. not sure who is right there. WIsh all this info was on the same page!

    To be struck by lightening.. how traumatic that had to be.






  17. topaz

    topaz Senior Member

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    Thanks Madie

    I am already on MB12 and in fact was on the entire Freddd protocol when I crashed so I then stopped everything except the Mb12, Methylfolate and adb12. Many of the supplements I was on for a long time before starting the AMP. I have only taken the potassium and magnesium in the last few days in addition to the holy trinity.

    I listed all the supplements that Im taking in response to Freddd's query a week or so back but have not had his view on them.

    It is very hard to find a good practitioner here in Australia to help guide me. It appears this is a universal problem!

    I will wait until tomorrow and see what my potassium results are.

    Good luck and thanks for your thoughts and support.
  18. topaz

    topaz Senior Member

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    I think this is brilliant!

    You're moving! Even if its one step forward, half (or even one) step backwards, you know something is working and you are beginning to move. Better be on the roller coaster than stuck in bed! It gives you hope. Its like baby steps, one step forward, fall, two steps forward fall but pretty soon you're running.

    How much potassium did you take at the party to give you a lift?

    How much methylfolate are you matching with your 1g of B12? Are you taking adb12 also?

    You say "The peaks are higher than my normal best days, and the lows are lower than my typical worst,". Are the "normal best days" you're referring to the normal days pre-CFS or the best days you've had since CFS? I am very sorry to hear that the lows are worse than your previous lows but I still am happy for you overall as this is a brilliant sign of progress, imo.
  19. L'engle

    L'engle moderate ME

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    Getting the potassium right is really an up and down process. I keep getting floored by it. I bought more today and feel better right away. It is very hard to get enough from food sources if you are on methyl b12. I feel like each bottle of methyl b12 should come with a string attached to a bottle of K (potassium)!
  20. madietodd

    madietodd Senior Member

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    Thanks for all the encouragement......it really helps.

    I took 500mg potassium. That's how much I usually take as a dose.

    I'm not matching the methylfolate with the B12 dose. I'm trying to figure out how much I need to be able to eat vegetables. And so far, I'm not having much luck figuring that out. No matter how much I take in a day, I get sleepy from vegetables. Or at least, that's how it seems.......still experimenting.

    I don't take adb12. I have some in a form that can be divided super-tiny. But I'm going to stabilize all of this before I test anything else.

    I'm comparing my energy etc to my normal CFS energy. My CFS is mild-moderate, but my cognitive symptoms have always been a LOT worse than my physical ones. I've had CFS for 25 years. I have no idea what normal feels like. But sometimes, lately, I feel pretty close. Little flashes of it.

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