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Looking into methylation and need advice on getting started

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

  1. Stewart

    Stewart

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    I’ve recently stumbled upon the methylation cycle as the possible origin of health problems I’ve been struggling with for the past 20 years. I’ve been reading some of the discussions on this forum and trying to get my head around the basics – but it’s obviously very complicated, and as I don’t have a health or research background I’d greatly appreciate some pointers from anyone here who understands the processes and reactions involved.

    I’ve struggled with ME/CFS for the last two decades but it’s only been in the last couple of months that I’ve become aware of methylation as a possible factor. Earlier this year I saw a rheumatologist concerning recurring spine problems that I’ve had for over ten years now and they identified peripheral neuropathy in my feet (absent ankle jerk in both feet) and down my right hand side (diminished responses).The rheumatologist said it was possible that this was caused by the problems with my back, and sent me for an MRI of my spine. However when the results came back they discovered that this wasn’t the cause of the neurological issues – but they weren’t interested in investigating further, and my GP has downplayed the seriousness of the neuropathy as well.

    After doing a bit of reading on my own I wondered if the neuropathy might be the result of a vitamin B deficiency. So I took a B complex tablet – and within 15 minutes experienced tingling in my hands and feet, aching in my joints, a crawling sensation down my legs and other jolting sensations down my back and around the back of my head. After a couple of days on this supplement the reactions started to die down, so I tried upping the dosage by taking two tablets – and sure enough I again experienced the same reactions all over my body.

    As I wasn’t sure which specific B vitamin it was that was causing a reaction, I tried adding some B1 tablets. Nothing happened. Then I tried some sublingual methylB12 and took 2mg - I didn’t notice a reaction at first, but within a couple of hours I had a throbbing headache. As I carried on taking the methylb12 over the next few days I started to experience wild mood swings – I became very tearful and depressed, and struggled to cope with kind of any social interactions. I tried to get up to a daily dose of 5mg, but I just couldn’t cope with the severity of the emotional disturbances so I’ve currently stopped at 3mg a day (2mg in the morning, 1mg before bed). The mood swings seem more manageable with this dosage (so far at least).

    So I’m pretty sure that B12 is part of the problem (despite my pre-supplementation blood test giving a B12 reading of 512) and after a bit of research I suspect that this means that I’m not methylating properly – but I’m at a bit of loss as to how I proceed from here. Is my reaction to the methylb12 a standard healing response that I need to push through – or I do I have some sort of intolerance to methyl that means I need to use a different form of B12 instead? Presumably it would help if I had some tests done to get a fuller picture of what’s going on and how to proceed – but I’m not sure which one(s) would be most useful.

    Additionally I’m wondering if there’s any way that a methylation issue can cause problems with the integrity of spinal discs. My MRI results showed 7 herniated discs and 3 bulging discs (in addition to degeneration of several other discs) and the rheumatologists told me that it was extremely unusual to see so many issues in someone my age (I’m in my late 30s).They had no idea what caused it, and couldn’t suggest anything in the way of treatment. My Google searches have revealed that lots of people with disc problems seem to also be deficient in B12, but I haven’t come across any clear link or explanation as to why this should be the case.

    So, I have three questions that I’d be grateful for some help with;
    • Do I push on with the methylb12, or should I play it safe and switch to another form of B12 instead (such as hydroxocobalamin)?
    • What tests do I need to have carried out? From what I’ve read it seems that an SNP test (such as that offered by 23andme) and a methylation panel (like the one offered by seekinghealth.com) would be most useful – but is one of these more useful than the other? And is there anywhere in the UK – which is where I am - that offers either of them?
    • Is there any research (or theories) connecting an impaired methylation cycle to problems with the intervertebral discs (or to collagen production more generally)?
    Thanks in advance for any help that anyone is able to offer me.
     
  2. Valentijn

    Valentijn Activity Level: 3

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    You can order 23andMe. Because you're in Europe, the shipping costs a lot more. It's US$100 for the test, and about US$80 for the shipping. You just need to spit into a vial and send it back, so need to get a doctor's approval or visit a lab to have blood drawn or anything.
     
  3. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    I heard around the holidays they give you a $10 price cut on the 23andMe tests if you want to wait and see.
     
  4. Stewart

    Stewart

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    Thanks for the comments. So is the 23andme test a better place to start than a methylation panel (by which I mean, is the information it provides more useful in determining what's going on and what treatment is needed to compensate for it)? Or do I ideally need to do both?
     
  5. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    I asked the se question. 23amdMe gives you the info you need. Once you get the results you go to either genetic genie or MTHFRsupport.com to get the raw data interpreted.

    Genetic genie is $10 and MTHFR is $20 and I'm told more comprehensive.
     
  6. Valentijn

    Valentijn Activity Level: 3

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    I'd prioritize the 23andMe test. It'll catch most problems, and the people I've see with both the test and the full methylation panel seem to have methylation results that are exactly what you'd expect based on their genes.
     
  7. Stewart

    Stewart

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    Those are very helpful replies - thanks very much for the advice.
     
  8. caledonia

    caledonia

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    Get the 23andme.com test in the works. Then, in the meantime, watch my Methylation Made Easy video series.

    You probably have COMT mutations causing the mood swings, in which case, you would want to take hydroxycobalamin, and either no methylcobalamin or only a little methylcobalamin. We can tell you better when you get your results back and post them on here.

    You also want to have nicotinic acid on hand before you start. In case you run into problems, you can shut down methylation and stop adverse effects right away. More details on that are in the video.

    Forgot to add, the link to the video is in my signature, along with a bunch of other significant methylation links.
     
  9. Gloria H

    Gloria H

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    Hi Caledonia,
    The nicotinic acid you mention is equated to "niacin" by Wikipedia. But niacinamide is not = to nicotinic acid, agreed?
    Blessings to you
     
  10. Freddd

    Freddd Senior Member

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    Hi Stewart,

    I can't see how an expenditure on 23andme and other testing will actually provide a strategy for healing. Nobody using these has healed yet. At least I have gone down the path of being cured of FMS and CFS. Just as you serum cobalamin level doesn't rule out MeCbl response these tests don't actually predict what will cure you in any way. Just ask all those cured of FMS/CFS/ME by following that strategy of vitamins choice by test results including SNPs.

    HyCbl when it comes right down to it has approximately zero probability of actually curing you of FMS/CFS. It will most likely make the majority of symptoms worse and cause a much more intense startup when you finally take MeCbl and AdoCbl, though it can somewhat improve some symptoms in 2/3 of people. In virtually every test looking for microscopic changes about 1/3 don't respond. They don't show visible healing either.

    Interesting on those disks. Me too. I know of no connection.

    As I carried on taking the methylb12 over the next few days I started to experience wild mood swings – I became very tearful and depressed, and struggled to cope with kind of any social interactions. I tried to get up to a daily dose of 5mg, but I just couldn’t cope with the severity of the emotional disturbances so I’ve currently stopped at 3mg a day (2mg in the morning, 1mg before bed). The mood swings seem more manageable with this dosage (so far at least).

    Excellent. It shows that the neurons are waking up and all sorts of biochemical neurotransmitter transactions happeing. My experience with each addition I needed was 6-9 months of emotional volatility and turmoil. It really does get better. The exact details depend on which processes and which areas were damaged and where the mitochondria were not functioning. I started with some extremely energetic rushing for an hour, then a month of euphoria and followed by 9 months of the aforementioned volatility. That happened 3 times; MeCbl, AdoCbl and LCF.
     
  11. Valentijn

    Valentijn Activity Level: 3

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    Actually, I have found it very helpful. I learned that I don't have any MTHFR problems, hence can take folic acid to my heart's content. I also learned that I have a big problem with producing methylB12, and will probably need to supplement B12 for the rest of my life.

    I also learned that I have a detoxing gene (GSTT1) missing, and can't handle certain substances or certain toxins in a normal manner.

    Plus we have the ability to look up our rare mutations, to see what might be causing problems for individuals. And our rare results can be compared with each other to see if some of us have similarities which might account for disease pathogenesis.

    Granted, I do prefer a scientific approach over a guru-based approach. I'm sure there are people who find your way more appealing.
     
    overtrain likes this.
  12. Stewart

    Stewart

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    Thanks for all the further comments. Following the advice here, I've just done the 23andme test and am now awaiting the results. I'll post when I have them and hopefully that'll clarify what the underlying issues are that need to be resolved.

    Fredd - thanks for your lengthy comments, and I take your point that knowing which mutations you have isn't a substitute for a healing strategy. I've drifted (for want of a better word) into following your protocol, as I was already taking many of the supplements you recommend.

    I'm currently taking 2mg meb12 (Solgar) and 1.5 mg of adob12 (Country Life) a day sublingually, along with 10mg of metafolin (Solgar), 2,400mg of omega oils, 600mg of alpha lipoic acid and a couple of different B Complex capsules (one in the morning, a different one in the evening). Is there anything else I should be taking?
     
    Valentijn likes this.
  13. Freddd

    Freddd Senior Member

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    HI Valentijn,

    I don't find the Guru types very helpful art all. They don't practice critical thinking, collect data or arrange it into a working system. Gurus believe in all assorts of nonsense and refuse to test and validate it. Some of them even believe in the power of the SNPs. So let's see one how any of their gurus have helped anybody heal including themselves. Oh that's right, most of them have no experience of actually healing with their belied systems. There are promoting and selling their cure which ought to work.

    It's good that you found those things for you. A few days of noting your responses as you tried various folates could have told you which ones worked for you under those test conditions. Then there are all those following such guru supplied theoretical advice and find that the interpretation of the genes can actually keep them form using what would work better. Guru worship is a tough row to hoe. Good luck with it.

    I haven't seen any evidence of lots of people cured by following such advice in the past year. In fact I can't even find 1 such person. Have fun.
     
  14. overtrain

    overtrain Medical Mafia needs to die via this virus.

    y
    You may have found one right here. Since getting 23 results back, I am following where my genes lead and wondering now if I haven't cured myself. I am better than I have been since getting sick Fall of 2011. Dealing w methylation issues, I have gone from basically bedridden to being able to leave the house several days in a row and biking whole way several miles WITH NO REBOUND fatigue.

    Explain that? I can't. Very frustrating not to know why I'm starting to think I might be cured, at least for now, cross fingers. The sole variable has been detox pathways I only figured out were hosed because I spit in a tube & sent it back to some company. Doctors were useless. I am my own doctor.

    I might start a thread re cured? The million buck Q.

    Good luck, poster waiting to get results back. :)
     
    Valentijn likes this.
  15. Freddd

    Freddd Senior Member

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    Hi Valentijn,

    I would like to clarify a few things such as what the scientific method is. First, while lots of science has been used to be able to cut up the genes in hopefully meaningful ways, they have not been tested for meaning by running trials, especially comparative trials, to document that it can change things all the way to a "cure" in x% of people.

    The Oxford English Dictionary defines the scientific method as: "a method or procedure that has characterized natural science since the 17th century, consisting in systematic observation, measurement, and experiment, and the formulation, testing, and modification of hypotheses."[3]

    http://en.wikipedia.org/wiki/Scientific_method

    So as you see from this definition it does not require high technology gene cutting to be scientific. The application of the SNP information has not generally undergone the scientific method in nutritional trials. The hypothesis are not being tested and modified with each iteration of "systematic observation, measurement, and experiment, and the formulation, testing, and modification of hypotheses."


    So how does one handle all sorts of scrambled data and less than systematic observation, measurement and formulation and testing..." etc with perhaps 100 variables in relationship with all the others? How many variables can you, or most other people, keep in mind at a time with mutual interactions; 3?, 4?, 5? 7? Maybe, 100? NOPE. Not me either.

    There is pattern matching such as the IBM WATSON system employs. There are other variations of that as well as things like a Monte Carlo Simulation. It just so happens that the nutritional trials people are haphazardly running on themselves all add up to a decent Monte Carlo Simulation, a little sparse because of the pruning done by participants. The choice of pruning can be significant as it shows the sticking points of those branches.

    So, using SNPs to guide nutrition to healing has not been verified via the scientific method, or if it has the results have not been shouted from the rooftops as those doing so run their trials and observe and measure and try to figure out how to modify the hypothesis so that it works.

    In all this there is also the element of predicting what will happen, the hypothesis and then confirming or not. So, based on thousands of trials I can predict from peoples descriptions of lots of symptoms that they will have a strong response, confirming the deficiencies, to MeCbl, AdoCbl, L-methylfolate and LCF with high reliability. Depending upon how and when each item is started can supply additional information I can predict several of the major pathways from there based on the thousands of people having experienced this. Nothing is said about how the person interprets the responses. Then based on these responses there are some pathways that chart out all the way to healing while others will hit major bumps in the road and not continue. The bumps are then analyzed and the next trial takes that into account, hence the hypothesis is constantly evolving. It is the very essence of the scientific method. Maybe you have forgotten that computers used to be multi million dollar research devices because they can now do all sorts of trivial things. Information theory, game theory and all sorts of ways to look at data can all be part of that scientific method.

    It's at the point now that I could reasonably well select those people who will respond favorably most of the way to healing from mining the data and then running through a "sieve" program selecting those who are likely to heal. Of those selected people I can predict a substantial drop of pharmacy costs and other utilization. Unfortunately, knowing how insurance companies operate, they are more likely to use it to deny treatment to people based on history rather than custom tailor a nutritional program for them. Traditionally they ignore people who hit too many bumps.

    Eleven years ago I was a "write-off" type patient. No doc in their right mind wanted anything to do with me because history showed that absolutely nothing worked, though my chiropractor provided substantial relief from some of the pains and headaches and I was self-pay for 3 visits a week. Chiropractors are like Rodney Dangerfield in medicine, "They don't get no respect" from a lot of the medical community. Now I am an easy patient and get the few tests needed to monitor my last few prescriptions. I'm in no particular danger of dropping over dead as I was 11 years ago.

    So here I am trying to make sense of this large collection of medical write-offs like me. And I do it scientifically, not perfectly, but well enough that I have always found the "next step" for 10 years for myself and many others. I've done more than a dozen private self funded studies and thousands of titration trials with myself and thousands of people doing such trials themselves and sharing their reactions. Scientifically it doesn't matter at all what their exact results are for any specific person. Personally I'm glad that I have had such extraordinary personal results. However, it was a major pain needing healing in all levels and have a potentially deadly neurological "disease" that is regressed and more or less in check.

    I would like nothing better than to have a sizable controlled comparative trial of the Active B12/folate Protocol, the SMP and a protocol based on all the genetic info you like that somebody can integrate into a protocol defined approximately as well as the two mentioned. Then there would be the placebo group and the control group doing nothing. So we would have to have matched quints (rather than matched pairs).
     

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