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Fredd...Rich...Yasko...Methylation...? Help!

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by EMilo, Aug 15, 2013.

  1. EMilo

    EMilo Elizabethmilo.com

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    Hi everyone,

    I've been sick for 21 months and following my doctor's supplement and diet protocol for the last year. Nothing is getting better... Worse, in fact. I'm new to this whole methylation protocol thing and don't know who the people are you all talk about.

    Can someone please point me in the right direction or tell me a link to kind of "beginner's info" on this stuff?

    Thank you so much for the help!
     
    Critterina and Sabrina like this.
  2. Critterina

    Critterina Senior Member

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    Elizabeth, Welcome!

    I'm new here too, as of July 31. Some of this is pretty intense, as you probably have found out. We are all on our own journeys toward health, and the help you can find here is fantastic. That said, not everyone agrees on everything.

    I'm interested in the genetics and biochemical pathways and how to supplement to make up for things that don't work well because of the variations in my genetics. I'm visual, so I like the Heartfixer page, with all it's diagrams and explanations. http://www.heartfixer.com/AMRI-Nutrigenomics.htm That said, by now, listening to these people here who read the real research, I don't agree with everything they say on that page anymore. (I read the abstracts of the research, but that's about as far as I go.)

    Amy Yasko is a doctor who treats kids for autism using methylation protcols. She has published simplified explanations of the biochemical pathways. LInks to them can be found in greenshots' signature block. (greenshots is a Senior Member here.)

    Dr. Neil Rawlins is an obstetrician who got into this because his son was very sick. He has some good videos. Look for a link on www.methyl-life.com called "a doctor explains"

    Dr. Ben Lynch is a naturopathic physician who treats people, mostly with the MTHFR C667T mutation. I'm a MTHFR A1298C mutation, so I don't pay much attention to him.

    Rich van K, (R.I.P) was a longtime Senior Member of this site and a great contributor. His simplified methylation protocol is at http://forums.phoenixrising.me/index.php?threads/revised-simplified-methylation-protocol-august-25-2012-revision.19050/

    Freddd is a Senior Member. My favorite post of his is the first page of
    http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/

    Bluebell put together a list of links - more info than newbies like us can digest within a month. It's at http://forums.phoenixrising.me/inde...tional-links-about-methylation-and-b12.23974/

    That should keep you busy for a long time.

    Many people have done some genetic testing and just post their mutations and symptoms, lab tests, what they've tried and how it worked or not, and ask for input. I've learned a lot from those and have become entirely grateful for my situation, having seen the hell that others have gone or are going through.
     
    Ninjas, oh_noes, helen1 and 2 others like this.
  3. ahmo

    ahmo Senior Member

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    helen1, EMilo and Critterina like this.
  4. EMilo

    EMilo Elizabethmilo.com

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    And... Over four months later in desperation for another idea for treatment, I remember I posted this question. Thank you very, very much, @Critterina and @ahmo . I am very grateful for the help and will start reading now. X
     
  5. ahmo

    ahmo Senior Member

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    Here's something maybe even better. I only discovered it this week. PR member howirecovered has made a FAQ page for methylation protocol, really organized. It should help a lot. cheers, ahmo http://howirecovered.com/active-b12-therapy-faq/
     
    EMilo and S.A. like this.
  6. EMilo

    EMilo Elizabethmilo.com

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    Thank you so much!!
     
  7. EMilo

    EMilo Elizabethmilo.com

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    Wow, my husband and I have been researching non stop all week. There's a LOT of information! I haven't gotten my 23andMe results yet- can anyone tell me if there is anything I can start doing/taking before they come back? Probiotics? B vitamins?
     
  8. ahmo

    ahmo Senior Member

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    Hi Elizabeth. How about your diet...are you eating gluten and dairy? You might start by eliminating them and see if you feel any difference. Any suspicion you might have problems with high sulfur foods, eg. eggs, onions, cabbage? I'm on the GAPS diet, so it was easy (eventually) for me to work out how high sulfur (high thiol) foods and foods with histamines were affecting me, as when I stopped them, my eczema cleared. How's your gut? Probiotics are always a good thing (essential, probably). If you have histamine problems, there are some specific ones to look for and to avoid.

    Rich VanK and Freddd's protocols are not based on knowing your genetic results. So yes, you can start with B12 and folate. Please read the recommendations carefully so you get this going with slow and low dose. I've been researching for a year now. Slowly the material sinks in, and as your own reactions and symptoms arise, you'll more fully understand what's going on. Best to you, and hope this is a year of healing for you. ahmo
     
  9. EMilo

    EMilo Elizabethmilo.com

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    Thank you, @ahmo and @Critterina ! I am going to try starting methylB12 and methylfolate today. I have them in a liquid form and 1 drop is 0.5mg B12 and 2mg folate. Do you have any recommendations as to when I take it during the day? With or without food? Can I take it with all my other vitamins and supplements after breakfast? Thank you!!
     
  10. Soundthealarm21

    Soundthealarm21 Senior Member

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    Folate is best taken on any empty stomach. I very seriously would not recommend taking that much folate especially if you have no MTHFR defects. Your body doesn't need that much. You can always start low and work up. I take 800 mcg (have an MTHFR mutation) a day and the only reason I take 800 instead of 400 is because I take cholestyramine which uses up folate.

    There can be some nasty startup symptoms if take too much at one time. Especially if you feel very sick right now.
     
    EMilo likes this.
  11. Sea

    Sea Senior Member

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    2mg is a very large starting dose for methylfolate. A normal starting dose would be 200 - 400 mcg and some people need to start even slower.
     
    EMilo and Soundthealarm21 like this.
  12. EMilo

    EMilo Elizabethmilo.com

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    @ahmo , do you have any leads on probiotics that are ok for histamine intolerance? I haven't looked into sulfur foods!
     
  13. EMilo

    EMilo Elizabethmilo.com

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    @Sea and @Soundthealarm21
    OMG, you are kidding!!! My first doctor told me to start on 7.5mg! My second doctor said 2mg. And I need to start at 200MCG? I can't believe it. I have the methylfolate and methylB12 in a liquid from a compounding pharmacy and it's just going to go to waste. My doc charges an arm and a leg for phone consultations, so I'm even more hesitant to call him and ask him to change the Rx.
    Before I try, can someone tell me what a good amount of methylB12 would be to go along with 200mcg of methylfolate (assuming the compounding pharmacy can remake the solution).

    Thank you for saving me!!
     
  14. ahmo

    ahmo Senior Member

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    Hi Elizabeth. Another concern re your liquid formulation is that B12 needs to be sublingual, injection, or skin patch in order to be absorbed. I can't understand why MD/pharmacist would create this mixture. Unless you're planning to hold it in your mouth for awhile.

    lowhistaminechef has an article re the best probiotics to use for histamine problems, which do not contribute to the problem, and help gut inflammation. I spent 2-3 hours reviewing everything at iherb, as well as the brand she recommends, from Dr. Ben Lynch. The Ben Lynch probi contains PREbiotic, which NCM, creator of GAPS, warns against, for feeding both good and bad bacteria. I settled on the 2 I’m linking here, as well as soil-based PrescriptAssist. I now alternate these three. Bummer about your new rx. :bang-head: ahmo

    http://thelowhistaminechef.com/these-probiotic-strains-lower-histamine-rather-than-raising-it/

    http://www.iherb.com/Nature-s-Way-Primadophilus-Reuteri-Pearls-60-Pearls/14704
    1 Billion CFU Lactobacillus acidophilus; Bifidobacterium longum; Lactobacillus reuteri; Lactobacillus rhamnosus)

    http://www.iherb.com/Ortho-Molecula...=lactobacillus plantarum&rc=184&sr=null&ic=47
     
    EMilo likes this.
  15. Sea

    Sea Senior Member

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    Some people do start with large doses and don't have a problem. The 7.5mg or 15mg is a common prescription for depression, but for anyone who has methylation cycle problems the side effects of starting suddenly with doses like that can be horrible. It is much wiser to start slow and see what the effects are for you.

    It doesn't mean your compounded liquid is wasted though, you might use it further down the track if you determine that dose is ok for you. Also there are most likely ways of diluting the dose if you wanted to though I am not the best to advise on that.

    You don't need a prescription for methylfolate or methylB12. I get mine shipped to Australia from iherb.
    The Enzymatic Therapy sublingual MethylB12 are 1mg and are a good place to start. They can be divided for a lower dose to start if necessary.

    There are a few companies that make methylfolate. The one I use is by Solgar and is a 800mcg tablet. This also can quite easily be divided. They possibly provide a smaller dose product as well, sorry I can't remember.
     
    EMilo likes this.
  16. Soundthealarm21

    Soundthealarm21 Senior Member

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    7.5 mg? So they gave you Deplin?

    Psychiatrists give 7.5 to 15 mg Deplin because studies have shown that to be effective for a lot of people suffering with major depression. I remember when I told my psychiatrist I took 1/16 of the pill of Deplin and my depression vanished in 20 minutes. He was shocked that so little could have such an effect. But even 1/16th of the pill was way too much and I couldn't stay on it. The biggest symptoms for me was feeling very sick and the most scary one was it was very hard to breathe.

    I don't have a good dose of Methylcobalamin to give you. I will say that the RDA (recommended daily allowance) is 4 mcg, but most people a lot more than that. I personally take 2.5 mg a day, but I have no side effects with that. If I were you i'd say maybe start at 100-200 mcg.

    It's best to take the B12 first followed by folate (or at the same time, just not the folate hours before the B12) to avoid methyl trapping.

    Make sure you have potassium (coconut water is a great source) and niacin (I personally prefer the niacinamide form) on hand. Your potassium needs are going to increase and if you take too much methylfolate and B12 you can stop the process by taking the niacin.
     
    EMilo likes this.
  17. EMilo

    EMilo Elizabethmilo.com

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    @ahmo, thank you for letting me piggy back onto your research! That is so helpful. My brain does not work and I am so overwhelmed with research.

    Re: my Rx. Yes, the doc told me to put a drop under my tongue, so I hoped that would work for both the folate and B12?
     
  18. EMilo

    EMilo Elizabethmilo.com

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    @Sea , thank you, that is VERY helpful! Re: the liquid B12/folate combo, because it has no preservatives in it, I think it needs to be used pretty quickly. The pharmacist said it should be good for 2 or 3 months, but, by law, they have to put a 2-week expiration date on it, which he told me to ignore. I've already had it 3 weeks. It would be great if I could give it to someone (or dilute it, I guess I could call them and ask about that, thank you :)).
     
    Sea likes this.
  19. EMilo

    EMilo Elizabethmilo.com

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    @Soundthealarm21 , she didn't give me Deplin, but told me to find 7.5mg and start taking it. Happy I researched first! Doctors can NEVER fathom my sensitivities. I took literally 0.625mg of Ativan to see if it would help me sleep and I felt awful for 2 days. Difficulty breathing is my #1 scariest reaction, too. I thought I might have to go to the ER after taking 2.5mg of hydrocodone. Same thing with 3mg codeine. Never again!
     
  20. EMilo

    EMilo Elizabethmilo.com

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    I've been wondering about this, thank you! I can't stand coconut water, so I would love a different option for potassium. Do you happen to know a good starting dose for potassium? Re: niacin, I am scared of taking it because I have histamine intolerance. I don't know if anyone knows about a different option...? Again, thank you. :)
     

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