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Is methylation without a doctor impractical?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by NilaJones, Jul 20, 2013.

  1. NilaJones

    NilaJones Senior Member

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    It really seems like methylation might be my problem. But I live in a slightly-remote area and cannot travel.

    My local doc is very willing to prescribe tests, meds, etc. that I research and suggest, but she does not have any special knowledge about this stuff.

    Testing is also difficult to access here. It sometimes takes up to 3 years for tests she orders to get done, though 3 weeks to 2 months is more typical. We cannot, for example, order tests for a specific day and count on the blood draw being done that day... or even that week. And definitely no emergency tests.

    From what I've tried and read so far, it seems like experimenting with methylation frequently leads to abrupt, intense onsets of unexpected symptoms.

    You folks who are doing it, do you all have doctors and testing facilities that you can access 24/7, and is that what is needed? And, if so, do any of those docs work with patients over skype, patients who cannot travel?

    Thanks for your help :). I really want to do this, but am not sure how to proceed.
     
    Little Bluestem likes this.
  2. caledonia

    caledonia

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    If you feel like you need a doc to help manage things, you can try one of the docs at MTHFRsupport.com. Dr. Jess Armine, Sean Bean (nutritionist, not doc, but supposed to be very knowledgeable), Dr. Tim Jackson and few others do phone or Skype consults. The rate is something like $250 per hour, which will, of course, vary by practitioner.

    http://www.mthfrsupport.com/practitioner-2/united-state/
    http://www.mthfrsupport.com/pennsylvania/
    http://www.mthfrsupport.com/south-carolina/

    They will require a 23andme test and a Nutreval test at least to start. If they determine that gut issues are a biggie, then they will also need a Metametrix GI Effects stool test.

    23andme: $99
    Nutreval: $700
    Metametrix GI: $400

    Insurance may cover some of that.

    The tests can be ordered online and you don't need a doc (the lab provides a doc's signature where necessary). 23andme and Metametrix can be done at home.

    Nutreval requires a blood draw. I think Quest or Labcorp can be a little weird about tests like these. I got mine done at Any Lab Test Now, a chain with many locations nationwide. Very reasonable $30.
     
    maryb likes this.
  3. NilaJones

    NilaJones Senior Member

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    Thanks so much for the info, and details and prices :).

    I sent off my 23andme June 3rd, so I hope for results soon.
     
  4. ahmo

    ahmo Senior Member

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    Nila, I've proceeded without a doctor. I have a GP from whom I can request tests, but not much else. I initially began w/ GAPS diet, which stopped my downward spiral. Eventually I read enough to get 23andme testing, later ordered testing from Metametrix to prepare for Amy Yasko RNA supps. I've gotten most of my help from this forum, and related web searches. And I'm finally healing. For me Freddd's Protocol has been life-changing. And after reading of the many people in this community who need extra potassium, as I do, I finally traced back my many debilitating symptoms pre-GAPS as low potassium. All the times I was light-headed, on the verge of fainting, heart palpitations. No doctor ever tested for anything that would have showed this. Best wishes to you.
     
  5. NilaJones

    NilaJones Senior Member

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    Thanks!

    I wish I could follow a GAPS diet, but it requires way more time spent on food prep than I can currently do. I have stopped eating grains and beans, though, and I eat all-natural, mostly organic.

    Did you run into any strong or scary, unexpected symptoms with methylation? How did you figure out what to do about them?
     
  6. ahmo

    ahmo Senior Member

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    Nila, I realized in retrospect that I'd gotten into overmethylation, twice. Once from too much methylB12, the other from too much folate. In each case I'd raised one without the other. And in both cases I had histamine response, which is one of my ongoing symptoms. These involved rash on my scalp and heavy hair loss. Here are a few links to issues from Freddd's Protocol. His posts can be very dense, I've had to reread them countless times, but that's where I've found my support and answers. The 4 components of his Deadlock Quartet have proven essential for me to improve.

    THE COMPLETE METHYLATION REVIEW Fredd Feb 2013 [very long and involved]
    http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/

    http://forums.phoenixrising.me/inde...t-hole-insufficiency.22614/page-2#post-345537

    http://forums.phoenixrising.me/inde...kalemia-and-methylfolate-insufficiency.22968/ [re B vits, K+...]

    http://forums.phoenixrising.me/inde...e-anger-or-agitation.15837/page-3#post-352974
     
  7. NilaJones

    NilaJones Senior Member

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    Wow, I didn't even know a histamine response was possible! That sounds like it could be dangerous. And i am very sorry about your hair :(.

    Thanks so much for the links, i will look them over. There is so much stuff good on this site and I know I miss important things, so links are wonderful :).
     
  8. ahmo

    ahmo Senior Member

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    Nila, here are some more. The last one re bill Walsh I haven't looked at, just copied it down from a post. The first link below is includes overmethylation. You might find more, with a list of symptoms, by looking for overmethylation in search box. Yes, the hair loss was radical, it also might have been due to metal detox, but the way it occurred twice, both in close proximity to my dosages, leads me to think it was as I initially described. No more loss, I think it's growing back again. :) cheers, ahmo

    http://forums.phoenixrising.me/index.php?threads/what-is-methyl-trapping.22007/

    http://forums.phoenixrising.me/inde...t-hole-insufficiency.22614/page-2#post-345537

    http://forums.phoenixrising.me/index.php?threads/getting-back-to-balance.24134/ July 2013 Fred re role of Bvitamins

    Dr. Bill Walsh on overmethylation and undermethylation - videos
    (Scroll down on the following page to find them - these two videos are in the middle of his list of videos. I had problems linking to them directly here.)
    http://www.walshinstitute.org/Video.asp
     
  9. August59

    August59 Daughters High School Graduation

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    Just an FYI - Dr. Tim Jackson has an office in Huntersville, NC now. I haven't been there, but noticed he and his email address is referenced in South Carolina as the link above indicates.
     
  10. maryb

    maryb iherb code TAK122

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    ahmo
    can I ask who diagnosed your thyroid and what you take for this. congratulations on working your way through the methylation forest - too much for me I'm afraid, hopefully I'll have some help with this in the future, but so good to hear of people healing it gives me hope.
     
    Misfit Toy likes this.
  11. Misfit Toy

    Misfit Toy Senior Member

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    For many, including myself, the methylation protocol is too hard to follow ALONE especially if you are slammed heavily with cognitive issues with CFS. I can't do it, I could never understand Fredd's protocol and I don't have the time to become a doctor. Even as someone who is sick and can't do much, I just can't fathom learning every aspect.

    I feel someone needs to help us as it is one extra stressor especially if you are already too ill. Then again, many on here are self taught...so clearly they are capable. Perhaps you can to.

    I contacted THANE from "Living Wellness" to help me. He was recommended by another CFS person and he is charging $50 to go over everything and give you a list of what you need. Do I know if what he recommends is solid? No, but I don't think so many people have a real grip on this whole thing. It's ever changing.

    I have been on it before and yes, it can cause shifts that can really mess you up. Just like any supplement or treatment with CFS, you have to be so careful because these shifts can stick around for a bit.

    One of the biggest challenges is, the supplements can upset other supplements. For example, I am told I need glutamine. But, Yasko and many feel that glutamine can cause excitatory issues, which I sure don't need. My gut is a mess. So, this is where it becomes confusing. This can cause that which can lead to this and you need to follow this so precisely which I feel is extremely difficult. Still trying though, albeit it extremely slowly.
     
  12. caledonia

    caledonia

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    I've actually run across one of Thane's videos on Vimeo and thought it was really well done. He had a really good explanation of how VDR affects COMT, which I've never seen before. https://www.facebook.com/livingwellnesstoday
    By using video, he's able to show the pathway diagram and how your SNPs affect each other, and sort of pull it all together in a way that we can't do by just typing on here. I don't think he can really help with treatment as he's not a doctor, but if you need help understanding you particular pathway problems and you have $50, I would go for it.
     
  13. maryb

    maryb iherb code TAK122

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    caledonia
    thanks for the link I will have a look at the video when I get a good day - its really strange but as well as being unable to understand/follow written information for long, trying to focus on diagrams in particular makes my brain really ache, I've never really known whether its an eye problem or just the general fog of the illness, so sad for me in particular as I was an avid reader all my life until ME.
     
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  14. Misfit Toy

    Misfit Toy Senior Member

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    caledonia, Thane prescribed supplements for me and my doc agreed with them. He also gets back to me in 24 hours if I have a question. He did the video, but he also wrote it up for me for another $50. He's reasonable and knows a lot about GAPS diet and other protocols, too.

    I recommend him for a start.

    I am unable to absorb the video. Again, too sick.
     
  15. caledonia

    caledonia

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    Sounds like a good reasonably priced alternative.

    I don't remember if I've mentioned it to you, but 100mg CoQ10 works wonders for my brain fog, and it's the only way I'm able to absorb this stuff. It's easy to try and you should know within a few days if it's going to work.
     
  16. maryb

    maryb iherb code TAK122

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    caledonia
    I tried coq10 but no improvement - also ubiquinol which made me feel actually worse - why I have no idea.........
     
  17. NilaJones

    NilaJones Senior Member

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    Wow, thank you folks!
     
  18. NilaJones

    NilaJones Senior Member

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    Hi folks, I got a bunch of new test results back and thought I'd see what y'all had to say about them :).

    (I also tried 7mcg B12 yesterday, after being off folate for 4 days, and had a very unpleasant entheogen-like reaction that lasted 3 hours. Details in this thread: http://forums.phoenixrising.me/index.php?threads/23andme-results-methyl-vs-hydroxy-b12.24497/ )

    Blood and urine test results:

    Abnormal:
    N-methylhistamine, urine 230
    prostaglandins, urine 410 (while on 200mg celebrex daily +some GLA, maybe much higher without)

    IBC unsaturated 372
    total IBC 400
    iron sat 7
    ferritin 5
    iron 28

    Normal:
    homocysteine s 6.5 (while taking 1100mg methylfolate daily)
    creatine, urine 32

    From 23andme (hat-tip to Valentijn for formatting!):

    COMT V158M rs4680 AA +/+
    COMT H62H rs4633 TT +/+
    MAO-A R297R rs6323 TT +/+
    ACAT1-02 rs3741049 AG +/-
    MTHFR A1298C rs1801131 GT +/-
    MTR A2756G rs1805087 AG +/-
    MTRR A66G rs1801394 GG +/+
    BHMT-02 rs567754 CT +/-
    BHMT-04 rs617219 AC +/-
    BHMT-08 rs651852 TT +/+
    CBS C699T rs234706 GG -/-
    CBS A360A rs1801181 AG +/-
    SHMT1 C1420T rs1979277 AA +/+

    Given all that, do y'all have any idea why:

    1. I react so intensely to tiny amounts of B12 (hydroxy or methyl)?

    2. I react so well to high doses of methylfolate without B12? 1100mg daily makes for a huge reduction in inflammation, and a substantial improvement in brain fog and energy.
     
  19. NilaJones

    NilaJones Senior Member

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    Sadly, it was of no help to me :(.
     
  20. Critterina

    Critterina Senior Member

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    Hi Nila,
    I'm new here, but I've been looking at the AMRI diagrams for 6 months now, so I can imagine what might be going on. Enough caveats for you? OK, so here's my guess:

    (Oh, refer to the top diagram at http://www.heartfixer.com/AMRI-Nutrigenomics.htm for this to make sense.)

    Your folate cycle is like mine in the MTHFR, MTR, MTRR, and SHMT. When you add MTHF, there are two paths it can go, (1) through the MTHFR to make BH4 and you make the BH4 from BH2 (and thus neurotransmitters and toxin removal and you feel good,) or (2) through the MTR to make methionine out of homocysteine (no BH4). Path (1) is partly blocked by your A1298C +/-, so it works only if you push it. Path (2) is upregulated, since your MTR mutation is "always on", at least half way with your MTR +/-, so it will suck up all the MTHF you give it - if (and here's the catch) it has enough MB12 to make the reaction go.

    So, your MTRR +/+ is what makes the MB12, and it doesn't work too well. So, you take MB12, bypass the defective MTRR, the reaction goes, and you steal all the MTHF away from the cycle that make BH4.

    But why does it work with OH-B12? I think that perhaps, because you're COMT +/+ on both variants, you probably have plenty of methyl groups and the B12 is the limiting factor for how fast your broken MTRR works, not the fact that it's broken. So, even with a broken MTRR, you react to hydroxy-B12 by stealing the MTHF so you don't make BH4.

    Now, if it sounds like I know what I'm talking about, reset please. It's a guess.

    But before addressing these, Yasko says to address the SHMT, which should be in the upper left of the folate circle in the AMRI chart. (Like you I'm a +/+). The AMRI site above says 800 mcg folinic acid. I haven't tried it yet - but it should come in the mail on Friday. Have you?

    BTW, I'm the opposite COMT from you, so I could take MB12 all day long and not react the way you do. (Well, maybe not all day. I have done 5000 mcg 3x in one day as a test - no reaction.)

    Hey, thanks for the good question. You really made me think.
     
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