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whose methylation protocol to follow.

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Ambrosia_angel, Jan 9, 2014.

  1. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Help me I fell dumb.

    There are so many protocols. Do I follow myhill's more complex protocol or rich van's protocol. I'm in the uk so I can buy the products on Dr myhill's website more readily in the uk. I really just want to create a plan and price guide. I'm trying to look at all possible treatment plans.

    I've read that some people haven't always had positive results from Dr myhill but I'm not sure.

    Please help me. What chemicals do I need? Does Dr myhill treatment look positive and good?
  2. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Also do I need the vitamin package and mitochondrial rescue package like on Dr myhill's website? I don't want to be overdosing on stuff...

    Can someone help me create a basic protocol? My symptoms are fatigue, a damage immune system, not much tummy/food sensitivities, not much joint/muscle pain, a few chronic infections. My main aim is to rebuild my immune system.

    I feel really silly asking for help to make a protocol but I'm trying to look at all avenues.

    I'd love to get some personal advice.
  3. veganmua

    veganmua

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    I'm currently asking Dr Myhill for help with the methylation protocol. She's very busy so you might have to wait a while for her letter(s). I think the protocol you need to follow really depends on your genetic results, have you had testing done?

    Good luck!
  4. Ambrosia_angel

    Ambrosia_angel Senior Member

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    I don't have testing. I think it won't be effective money wise when I can hopefully start some sort of treatment. I'm not getting help from the government benefits wise so I want to just do that. I know Dr myhill has a waiting list though.
    I want to try and create a protocol myself but I don't he difference between the drugs etc. I want to make sure I'm trying somethings that people have benefited from.
  5. Freddd

    Freddd Senior Member

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    Hi Ambrosia_angel,

    I am recovered from FMS, CFS the past 5 years and congestive heart failure finally in the past year after finally getting rid of the last traces of paradoxical folate deficiency with the active b12 protocol. I would include ME because I had the symptoms but it isn't a USA recognized diagnosis. Now when I gain weight it is because I'm eating too much and not exercising enough because it so good again not being sick to my stomach all the time and not because I'm putting on water.
  6. joshi81

    joshi81 Senior Member

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    Ambrosia i suggest you to have a look to Freddd's protocol, he's also very kind to answer if you have questions. At first it may seem a bit overwhelming because there are to many things to read and understand but if you are motherlanguage english you won't have problems
  7. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Hi thank you for posting.
    Will methylation be beneficial if I don't have a b12 deficiency? I was tested a while back though. But I've never had a b deficiency since I've been ill. Only D.
  8. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Have you started methylation? I have seen your posts a bit but wasn't sure if you started or not. If you have how are you feeling?
  9. xrunner

    xrunner Senior Member

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    @Ambrosia_angel
    To answer your question, there's only one protocol that has been studied on CFS patients, albeit a small study, which is Rich's Simplified Methylation Protocol.

    That protocol works because a) the results show that it does and b) when tried it and it raised my plasma glutathione levels. My own tests are not representative of what may happen in others but they do confirm the results of that small study.

    However if you want to approach it in a rational manner, first I'd take a methylation panel at the ELN which will show whether you're going to benefit from the protocol and take it from there.

    Here's info on the Simplified Methylation study you may want to take a look
    http://www.prohealth.com/library/showarticle.cfm?libid=16138

    If you have a certain ME diagnosis and particularly if you have been seriously affected it's unlikely that methylation by its own will be sufficient to cure you but it should help.
  10. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Well I've only had cfs for just over a year. So I know I have a strong chance of recovery. Also I'm considered fairly young to most sufferers on here. I am quite severely affected (can't walk more than down a road etc). Not in education or work etc because of cfs.

    I seriously can't afford testing every other month though.~ it's like £250 and maybe I could just put that Money into the treatment?
    Thank you for that link. I always see protocols changing though. How did your protocol go if you did it..?
  11. xrunner

    xrunner Senior Member

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    Testing is not strictly necessary but it helps to know if there's something else to address beyond methylation.
    There hasn't been that many changes to the SMP, in any case the latest version here
    http://forums.prohealth.com/forums/...tion-protocol-august-25-2012-revision.213246/

    I did the Myhill protocol back in '07 and got worse (by that time was housebound), the following year did an aggressive methylation protocol with high doses both oral and injecting which helped with brain fog but not with fatigue. I could not even walk down the road).
    The SMP I did two years ago but slightly differently than the standard.
    I took a B complex (Thorne basic B), Perque Hydroxy B12 (at times I switched to Mecbl but did not notice much difference, this may be subjective), a Thorne multimineral (don't like multivitamins) and phoschol.
    I did not have adverse reactions but by the time I did it, I had already recovered a bit with Lyme treatment. I felt it was doing something and shortly after starting this I felt confident enough to remove my amalgams and chelating lead and mercury.
    However, the game changer for me were GcMaf, Lyme treatment and chelation. Now I am well enough that I do not need any supplements or meds to feel reasonably well and am slowly improving with diet and exercise.
    Overall I think the SMP is a good starting point before doing anything else if required.
  12. Ambrosia_angel

    Ambrosia_angel Senior Member

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    @xrunner

    Okay. So I'm guessing I don't have to follow specific brands either. Because it quite hard to find all the products in one place and holistic heal have a customs warning so I don't want to deal with that. I was thinking iherb because of the discount
  13. jepps

    jepps

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    xrunner, would you tell me, which kind of lyme treatment did you follow, and with which supplements did you chelate?
  14. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Hi everyone so I made a little treatment protocol based on both fredd's and rich van's. Could I please have some advice? Still learning.

    From iherb.com
    • Jarrow formula, methyl b-12 5000mcg (60 capsules) maybe hydroxy b-12 if it doesn't go well.
    • Solgar, folate as metafolin 800mcg (100 capsules)
    • Source natural, megafolinic 800mcg (120)
    • Now food, lecithin (100)
    • Potassium
    And a multivitamin from like the holistic heal all in one. It's hard to find one but I saw this multivitamin mentioned by another member http://uk.iherb.com/Pure-Encapsulations-O-N-E-Multivitamin-With-Metafolin-L-5-MTHF-60-Capsules/52461

    Not sure if the ingredients would be okay as it has metafolin which I'll already be taking. But I also saw this popular multivitamin which had many reviews.
    http://www.iherb.com/Nature-s-Way-A...in-Max-Potency-No-Iron-Added-180-Tablets/4120

    Any advice on the best one? Also if the treatment goes positively then I will may invest in NT factor.

    Anything else that could improve my treatment overall. Also what about the mitochondrial thing?
  15. Freddd

    Freddd Senior Member

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    Hi Ambrosia,

    The Jarrow MeCbl likely won't work any better than the HyCbl. The ONLY one I can suggest with confidence is the Enzymatic Therapy.

    Source Natural Megafolinic is folinic acid and could give you paradoxical folate deficiency blocking 16000mcg of methylfolate making your deficiency symptoms much worse, causing unending "detox" otherwise known as paradoxical folate deficiency.

    The Methylfolate, any brand, will likely work.

    Anything else that could improve my treatment overall. Also what about the mitochondrial thing?

    That requires AdoCbl and L-carnitine fumarate (90% of CFS/FMS folks, 10% ALCAR).

    I takes all four of the deadlock quartet done in an ordered method that seeks it's clues form the responses as they happen such as induced potassium deficiency and induced folate deficiency because it usually requires more than a person starts with.

    It will likely be much easier and less expensive to start with what appears to have a much better chance to work and then after healing is started it is then the time to experiment with healing starts and stops finding what works best or not at all. And it is either working well or getting worse often. There is not a smooth curve. It works well or it doesn't work. The trick is to recognize what are the flags of healing like induced deficiencies, and titrate to fix those.

    It is of course up to you to try whatever you want. Also, if you do try as I suggest the protocol I would suggest to not take CQ10 because it can cause very high blood pressure as it did for me and many others. Also glutathione and/or NAC and/or whey (for at least some people) can completely block effectiveness. Good luck and Good health.

    By the way, all 4 items are available http://www.iherb.com/?rcode=RED843
    Last edited: Jan 11, 2014
  16. Rlman

    Rlman

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    Hi Fred,
    if my blood levels of B12are normal, and urine methylmalonic acid normal, does that rule out a B12 deficiency? Or is the only way to know for sure by trying out your protocol? my blood level is 500-600 when eating chicken/eggs, and if I supplementi a little B12 daily the levels go over 1200. I have felt no difference in energy either way.Thanks Fred!
  17. Freddd

    Freddd Senior Member

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    Hi Rlman,

    The tests like that are pretty useless. Because of the way b12 research and treatment developed it means you are not yet dying from b12 deficiency. You might have 250 symptoms but they that you don't have any of the magic 5 symptoms that means you are in imminent danger of death. As 100% of symptoms of CFS/FMS/ME are MeCbl, AdoCbl, methylfolate and/or carnitine deficiency symptoms, of partial methylation block, methyltrap and partial ATP block, the symptoms tell the story. As you point out one meal or supplement with 5 mcg of b12 in it can raise the serum level 500-1000pg/ml in hours the level is just a level. I was dying 11 years ago with normal labs. It has been a tough battle but I survived all the wrong lab test interpretations and am recovered from FMS, CFS and congestive heart failure. The symptoms tell the story. The lab tests were designed to catch people dying from 2 or 3 things out of 300 symptoms. If you don't have those two or 3 symptoms badly enough, they think you are fine. B12 by itself often doses nothing at all. There is a 4 way deadlock around b12. As they don'['t measure what b12s you have they could all be junk b12s in the measurement. You could have enough of AdoCbl and not enough MeCbl or the other way around. I had all sorts of CNS damage that they don't even consider in the USA unless you have huge red cells. The brain and cord can have terribly low levels and severe deficiency damage and the body can be "normal" at the same time. So check out your symptoms against the lists. You likely wouldn't be here without 100-200 symptoms on the lists. Good luck. As many b12 researchers state, "There is no test that is definitive. Only a trial is definitive of whether a person can benefit from these vitamins. And in my opinion I would say only a trial that included all the needed factors of effective brands can tell the story. In one study they accepted people by symptoms At the end 62% of those who benefitted from MeCbl were those who would have been excluded by test results.
    Rlman likes this.
  18. xrunner

    xrunner Senior Member

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    The first few months of Buhner (did not like abx) which helped with symptoms in a major way as long I used the herbs.
    Then I started on oral abx and tried a lot of different ones (I will only mention the ones that worked for me). At the beginning the main improvement came with doxycycline whilst I was still on Buhner's herbs. When that stopped to work I had a dramatic improvement on Metronidazole alone. When that stopped to work I had another improvement by treating Bartonella with Azith-Minocycline-Rifampin plus Boluoke (I mention this supplement because that same combination had not worked previously without it). Then I went back on Metro + Azith with Boluoke and phoschol (again did not work without it).
    After that, abx seemed not to work any longer so I tried Ivermectin for parasites and had some improvements. When that stopped to work, I turned to GcMaf (Maf314) and over the space of a year I experienced further improvements.
    I continued from time to time to use some of the Buhner herbs as anti-inflammatories and mainly andrographis and resveratrol.
    During that period I also started chelation (had already started methylation with the SMP) by following the Cutler protocol to the letter (except for length of treatment) by using initially only DMSA and four month after amalgams removal DMSA and ALA and had some improvements.
    However, I didn't do all rounds of chelation he suggests but only until I saw key improvements (If I don't see significant improvements with a treatment I won't persist with it). During that time I also had a couple of important improvements with a natural anti pathogen called Kib500. That's it I think. Sorry I forgot to mention exercise. I started very slowly because Burrascano wrote in his Lyme guidelines that it was essential to Lyme recovery. He's right.
  19. xrunner

    xrunner Senior Member

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    - I would not mix two protocols. I would choose one or the other so you can clearly see which one is best for you.
    In any case I would certainly start with dosages much lower than those and see what happens first.
    - I would not use a multivitamin with folic acid in it or B12 Cyano or herbs or any kind of fat soluble synthetic vitamins (A, E)
    - I would use phoschol instead of lecithin (NT factor is just a multi on a base of phospholipids most of which are phoschol, it also has folic acid in it and for that I would not use it).
    - If you eat plenty of vegetables you won't need potassium, you can get at least 4-5 grams daily from a good diet.
  20. Rlman

    Rlman

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    Hi Fred,
    thanks so much for the last reply.
    Can you please provide a simple test protocol for me to try in order to see if this can work for me, or not.
    I'm too brain fogged to understand all the details on other forum posts.
    Thanks,
    Ron

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