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Some guidance, please

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Matt_C, Dec 13, 2015.

  1. Matt_C

    Matt_C Senior Member

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    Hi all,

    It was recently suggested I may have a MTHFR SNP so I went ahead and had the tests done and was found to be homozygous for C677T. My homocysteine levels are on the low side too, slightly under the bottom end of the range. From everything i've read this means I am not methylating well and should benefit from a methylation protocol. I had CFS for years but resolved most of the symptoms over the years but am still left with chronic insomnia, chronic tiredness, and low energy. So I read around and found Freddd's protocol here, and also a protocol at mthfr.net. They are a little contradictory and so i'm left confused about how to proceed.

    Is there a link to some posts that explain what donut hole folate insufficiency actually is? I.e the symptoms? And Folate insufficiency? And Methyl-trap, methyl-block and how to tell the difference between them all?There's a lot of talk about them and everyone seems to know what they are, but I can't find any posts that outline what the symptoms are and how to identify when I need to take more potassium or more methylfolate, etc.

    The protocol at mthfr.net also suggests to stop taking methylfolate if you start to feel bad whereas Freddd suggests it's this donut hole folate insufficiency and that even more folate is needed, or potassium at high doses until one starts to feel better. But i'm unsure what to do. I'm not seeing my integrative GP until the 22nd of December so i'm just trying to find as much information as I can online in the meantime.

    I've started methylfolate supplements initially at 500mcg a day while I waited for the methylcobalamin, adncbl, potassium, and l-carnitine as they aren't available in Australia. I noticed some changes straight away and then seemed to get quite irritable on the 3-5th day with some mild headaches. I started the mcbl three days ago now and have added a little bit of potassium. Since starting this I have slept right through the night two nights in a row, which is very significant for me, but yesterday and today i've been feeling very tired and heavy headed and today i'm a little off-balance on my feet. Hopefully someone can point me in the right direction.

    Cheers,

    Matt
     
  2. telochian

    telochian

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    This is a pretty good place to start I think

    http://forums.phoenixrising.me/index.php?entries/my-understanding-of-freddds-protocol.1697/

    Personally, I'm C677T heterozygous and yeah, Australia really sucks for trying to get methyl supplements. I can't say I've ever really been able to identify low folate symptoms, but low potassium is pretty obvious I think. The first sign of it for me is irritability and then I get cramps and numbness in my feet and ankles. It's almost like I can feel my heartbeat through my peripheral nerves. As it continues my heart rate increases.

    Low b12 manifests for me as a really tired, foggy (almost like a hangover) feeling and I notice that I am not hungry at all and become apathetic.

    The off balance thing I haven't been able to totally solve, seems to be something to do with potassium/electrolyte balance, but I can't see to get stable with it. Hopefully a guru can weigh in on this one.
     
    Matt_C likes this.
  3. ahmo

    ahmo Senior Member

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    See my signature for several pieces re Freddd's Protocol. The 2nd is a compilation I've made of Fred's comments, you'll find entries for the different folate issues. Also more links at the end of the guide. good luck.
     
    Matt_C likes this.
  4. Matt_C

    Matt_C Senior Member

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    Thanks for the info. I've read through a lot of this material but still struggle to find a list of symptoms related to low potassium as opposed to low folate and how to know when to dose the delight supplement. Some symptoms of low potassium might be similar to my pre-existing symptoms so I may not recognise it and suffer needlessly.

    Also, anyone know why vitamin D is considered an essential co factor?
     
  5. nandixon

    nandixon Senior Member

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    Lower homocysteine is actually more suggestive of someone who would be methylating well. (The methyl group from methylfolate is transferred to homocysteine to create methionine. All else being equal, low homocysteine tends to suggest this process is proceeding well and that sufficient methylfolate is therefore available, irrespective of the C677T SNP.)

    Have you had your methionine levels checked? If that's low, it could suggest it might be worth trying to supplement that amino acid - in order to increase your homocysteine levels (into the normal range), but more importantly to increase S-adenosylmethionine (SAMe), the body's major methyl donor.

    In other words, if you really are lacking methylation capacity (via SAMe), this might be due to a shortfall in methionine rather than methylfolate. Methionine is an essential amino acid and the body cannot meet its requirements by recycling homocysteine (using methylfolate) alone.
     
    waif, Kathevans, Matt_C and 1 other person like this.
  6. Matt_C

    Matt_C Senior Member

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    Hi nandoxin,

    No I don't think I have had my methionine levels checked. I'm sure the Integrative GP will want to check them, if not i'll have them included in my next lot of blood tests.

    That's interesting and I guess part of the problem with finding information on the internet. I can't seem to find much info that would help me to identify whether or not i'm methylating well. I certainly have a lot of symptoms and have had a noticeable response to both methylfolate and methylcobalamine. Although i'm nowhere near as sick as I once was, something still isn't working well.

    My bloods say that I have slightly high MCH and low TIBC and Transferrin. This indicates i'm slightly anaemic and everything i've read online about it suggests vitamin B12 deficiency is one of the causes. So I think i'll continue taking Methyl B12 and start increasing the doses perhaps and see how it goes. I also have high levels of folate in my blood and I wasn't taking any supplements either, so supplementing with methylfolate made sense. My referring doctor mentioned it again when talking to me about a possible SNP.

    Thanks for the feedback. I'll be happy to hear of any other recommendations going in to this doctor's appointment in a week's time.
     
  7. Crux

    Crux Senior Member

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    Hi @Matt_C ,

    It could be an overgrowth of gut bacteria. Many of them produce folate. Many of them utilize B12,( causing deficiency).
    Low iron can occur. ( The body will sequester it from pathogens, sometimes.)

    High MCH and MCV can occur with adequate or high folate, but B12 deficiency. ( other reasons too)

    Elevated folate toxicity information isn't easy to find. Same with low homocysteine.

    Elevated folate can cause many problems, neurological, etc.
     
    Gondwanaland likes this.
  8. Matt_C

    Matt_C Senior Member

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    waif likes this.
  9. Matt_C

    Matt_C Senior Member

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    I've been reading that it's very possible to have normal or high blood folate and b12 levels yet still be malabsobring the vitamins. I can't figure out how to determine whether this is happening in any given individual aside from symptoms, and no mention of homocysteine is made in the articles.
     
  10. Matt_C

    Matt_C Senior Member

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    Also, been reading that my symptoms of fatigue and other neurological problems, and now the high MCV which leads to a diagnosis of Macrocytic Anaemia are "classic" symptoms of B12 deficiency.
     
  11. nandixon

    nandixon Senior Member

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    In two of his responses in the Comments section below the article, Dr. Lynch also mentions the potential use of methionine:

    Also, I meant to ask you earlier, are you a vegetarian or vegan?
     
  12. Matt_C

    Matt_C Senior Member

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    No I eat a lot of meat and eggs and methionine-rich foods. I need to reduce my protein intake actually but struggling to replace it.
     
  13. nandixon

    nandixon Senior Member

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    Interesting, I would still double check your methionine levels, because if that's low, that might be the simplest fix for the mild hypohomocysteinemia finding (assuming it needs fixing).

    It may also be that if you have a significant upregulation in transsulfuration (including the CBS enzyme) that that might account for some of the lowering of homocysteine. If your methionine levels are normal, though, that upregulation would seem to have to be rather large to so completely negate (and then some) the effect of the homozygous MTHFR C677T.

    Perhaps that low homocysteine value is your body's normal set point, but it seems worth fully investigating. Good luck!
     
  14. Matt_C

    Matt_C Senior Member

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    Thanks, i hope to have it fully investigated. But I live in Australia and our doctors here on the whole are not very good. There are a few who claim to be knowledgeable about mthfr snp's and we also have a group of naturopaths who run mthfrsupport.com.au which is affiliated with Ben Lynch's business. I guess I should get some answers there, but I'm not sure if I trust them given that they have a financial interest in the products they would supply me with. And I'm not sure how experienced they are in dealing with unusual cases like me. I guess I'll find out.

    Man I'm tired of being an outlier!! Give me HIV instead of this please God. Just for a bit of quality of life. Thanks.
     
    nandixon likes this.
  15. Matt_C

    Matt_C Senior Member

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    Is Freddd's protocol designed for over or under methylation? Is there a similar protocol or set of guidelines for someone with the opposite problem?
     
  16. Matt_C

    Matt_C Senior Member

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    I'm slowly figuring this out. Looks like I had paradoxical folate insufficiency and one of the signs for me is pimples/acne type lumps on my scalp and face. I started increasing my dose of methylfolate to counter this yesterday and already the lumps are subsiding. One thing that is troubling me now is my sleep has deteriorated over the last couple of nights, waking frequently and waking early and unable to get back to sleep. This is a long-standing problem for me which improved for a few weeks after starting Mb12.
     
  17. Matt_C

    Matt_C Senior Member

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    Perhaps I should stop reading other sources of information about methylation as it tends to confuse me. This resource, amongst others, suggests I am over-methylated because I have high histamine:

    http://www.nutritional-healing.com.au/content/condition.php?condition=Depression

    It says that the common neurotransmitter imbalances include High histamine and low serotonin, dopamine and norepinephrine, and that treatment involves supplementing with Calcium, methionine, magnesium, zinc, B6, omega-3 oils, A, C, E, SAM-e, inositol & TMG. Conversely, undermethylators typically suffer from Low histamine and elevated serotonin, dopamine and norepinephrine and treatment is with B3, B12, folic acid, manganese, zinc, omega-3 oils, C, E, DMAE & choline.

    The above appears is the general approach used in the Pfeiffer Protocol and may be based on outdated information or perhaps just a different approach to methylation sa they recommend using folic acid for undermethylation and they don't specify that methylcobalamin is needed.

    I generally identify more with the symptoms/traits of overmethylators vs undermethylators, although i'm not sure how accurate this information is. However, my response to MB12 has been very positive and I obviously need it. My response to methylfolate also suggests I need it. I'm unsure yet as to whether or not I have any problems with B6. I have some p5p and it's also included in Jarrow's B-Right.
     
    Last edited: Jan 12, 2016
  18. Matt_C

    Matt_C Senior Member

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    Something else i'm confused about is niacin. All the information suggests niacin is taken to slow down methylation and "mop up" methyl groups. Ben Lynch has suggested taking niacin at the same time as taking methylfolate is like having one foot on the gas and one foot on the brakes. But then he goes on to recommend one of his supplements which contains methylfolate as well as 100mg of niacin (http://mthfr.net/methylfolate-side-effects/2012/03/01/). Also, B-Right contains niacin, so I'm wondering whether I should look for a supplement without niacin and dose niacin separately when needed? Any advice is much appreciated.
     

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