A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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lets try the methylation theory

Discussion in 'Genetic Testing and SNPs' started by Kiwi Jack, Jul 6, 2015.

  1. Kiwi Jack

    Kiwi Jack

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    Results from Genetic Genie.

    Homozygous mutations;
    MAO-A R297R
    ACAT1-02
    MTR A2756G
    BHMT-02
    BHMT-04
    BHMT-08

    Heterozygous mutations;
    MTHFR A1298C
    COMT V158M
    COMT H62H
    VDR Bsm
    VDR Taq
    MTRR H595Y
    MTRR K350A
    MTRR A664A
    CBS C699T
     
  2. Critterina

    Critterina Senior Member

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    Wow! Never seen this combination. What are your symptoms? What supplements/Rxs have you tried and have you tolerated them? Have you ever had an amino acid panel done? That would be interesting with these SNPs.
     
  3. Gondwanaland

    Gondwanaland Senior Member

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    What did you find so remarkable, Crit? He is practically a twin of mine :p
     
  4. Kiwi Jack

    Kiwi Jack

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    Symptoms;
    Life energy draining tiredness, beyond fatigue and exhaustion.
    Wake in significant full body pain and discomfort.
    Sleep and rest provide no restoration, wake each day exhausted, fully alert, and in pain.
    Joint pain.
    Severe muscle cramps.
    Inability to recover from any form of exertion.
    Exercise or exertion exacerbates all symptoms. (sucks because I was an ultra marathon runner, my true joy)
    Generally feel like toxic soup.
    GI discomforts, indigestion, heartburn, cramps, mixed bowels.
    Brain - oh the brain, fog, memory and cognitive issues, emotional turmoil, can't think straight, tension.
    Zero motivation (sucks because I was an 80 hr/weeks business exec and loved it, another joy)
    Weight gain; 50 lbs, and can't loose it.
    Paresthesia, neuropathy, hands and feet.
    Balance issues.
    Poor vision, inability to focus.
    Unable to regulate temperature, night sweats, intolerant to heat.

    Zikes! Listing symptoms is such a negative activity.

    Amino acid panel - not sure? Is that the same as Organic Acid test? Which I did, almost everything was low low; low neurotransmitters, low energy production, low GI function, low metabolism, etc etc. I'm in Canada so these tests are difficult to get, only 1 lab in the whole country, flew out of province to get it done, expensive. That chemist loaded me up with a few dozen supplements but I crashed severely. My local GP and Naturopath pared it down significantly claiming to many methyl donors and to much sulphur. They say I first need to get my gut and detox issues in order. I did a few years of Lyme abx therapy which did nothing but ruin my gut, so they tell me. Who do you believe these days?!?

    Now I'm taking probiotics, metagenics ultra clear, blisphora, liposomal glutathione. Nothing's working so far but it's only been a month, if anything I feel a little worse. This has been my life for 14 years so I live in hope. This genetic approach makes sense (but so did the last 23 experiments). I watched my father go through something similar; a happy, athletic, vibrant man who became overly exhausted, difficult, and unable to work. So perhaps it's in my genes. But if genes are the problem, what's the solution??? Is the answer in these chemicals and supplements, or is Bruce Lipton correct and it's more about epigenetics and our perceptions. Wish I could think clear enough to make a decision.

    I like to think with all these years of personal research, self discovery, and more experiments than I care to mention, I'm on the cusp of recovery. The current plan, patience.

    The quest continues ....
     
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  5. Critterina

    Critterina Senior Member

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    The forward path from folic acid to the methyl (methionine cycle) is largely unimpaired, and possibly in overdrive. I don't see that in any of the people here. I never see the MTR A2756G homogyzous without something going on in MTHFR C677T or MTRR A66G. (Yes I do see the other MTRRs, but they don't add up to much as I understand, and one is actually an accelerator there, too.)
     
    Last edited: Jul 7, 2015
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  6. Critterina

    Critterina Senior Member

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    Yikes! I feel for you!

    Have they tested your saliva cortisol (3-4x in one day), thyroid, and sex hormones? Yes, there are neurotransmitter issues, but it seems there could be endocrine issues. I assume you have, but so much sounds like it could be this.

    You're taking probiotics, but in my experience, if you have gut issues, the stools improve only as long as I took enzymes/probiotics, and went back to their previous state until I did a 4R gut rebuilding program. (Which I am now repeating after antibiotics in May.) (I also am histamine intolerant, so the metagenics ultra clear, which has NAC in it, gave me symptoms - both physical and neurological.) Have you done a gut rebuilding program beyond probiotics?

    One thing to remember is that your basic genetics haven't changed. You have the same genome as when you were healthy. I took great comfort in this - that if my genes were causing it all along, how could I have been healthy (and histamine tolerant) for 52.5 years?

    Hold on to that cusp of recovery hope! There will be a cusp...there will be recovery...hopefully it will be soon. I know you're determined to keep plugging away at it until you get there! That's what former 80 hr/wk executives (and the rest of us former 80 hr/wk people) do.

    Critterina
     
  7. Kiwi Jack

    Kiwi Jack

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    Thank you Critterina.

    Thyroid appears ok although I feel hypo+. Blood cortisol has always been ok but saliva cortisol is high out of range in the am and low out of range the balance of the day. One theory is my wake pain is a sleep/wake transition issue and cortisol/adrenalin explodes which is why I wake so alert and non-restored, and my adrenals are shot. Total testosterone has always been normal but recently did free testosterone which is low out of range. But I've been shooting myself every few weeks and no effect on symptoms. I tested pregnenolone once and that was low out of range, DHEA normal.

    I'm taking Genestra HMF Intensive probiotic formula and Genestra HMF Neuro Powder probiotic formula. I think that's a gut rebuilding program but don't really know. My Naturopath talks a lot about the gut so I'm going on trust.

    My Naturopath and GP who is also into alternative med have agreed to meet and team up, so that makes me feel better. The Naturopath trained under the GP but the Naturopath is all over this genetic methylation stuff.
     
  8. Critterina

    Critterina Senior Member

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    Ok, so I have to ask: what does this mean? because what you say about your tests couldn't be said about my tests. I'll explain.

    Thyroid. Appears OK - does that mean they tested Free T3, Total T3, Free T4, Total T4, Reverse T3, and TSH? And all were "normal" and "normal" TSH was under 2? Do you sweat more from the face and head than the armpits? What is your temperature upon waking? Is your idea of feeling hypo just low energy, or some of these symptoms? or these? But heat intolerance seems more like hyper than hypo. :thumbdown: Hmmm!

    Blood cortisol, as I understood when my endocrinologist explained it to me, was what was bound up and not being used in the body, while saliva cortisol was free cortisol. I can understand how you can be too high in the morning, since there was an upper limit. My afternoon and evening saliva cortisol was "undetected" but still "normal" because the normal ranges started at zero. You must have had a better test. Well, high in the morning and low at night is better than the other way round. And if you are getting a high reading any time of day, your adrenal ARE responding, so an ACTH stim test probably would not be done. There are adaptogenic herbs (that I know nothing about, really) and supplements (that I now know to avoid, for me) that are supposed to help regulate adrenal response - and maybe someone who knows something might advise you. Maybe your doctors already have.

    So, if your total testosterone is normal, free is low, did they test sex hormone binding globulin? SHBG might be high and explain this. I don't know what they do if it is, but my endocrinologist tested it, and he has refused to do tests I've asked about if he wouldn't know what to do with the results, so I figure he knows to do something, so that means there probably is something that can be done.

    What do you mean that you "shoot yourself every week" - testosterone injections?

    I don't want to interfere with what your doctors are doing with your gut healing, but you might want to look at gut rebuilding programs to see how they compare. With the 4Rs, you 1. Remove foods that bother you (for me this was 6 months of elimination diet and total 2 years of avoiding foods because it took me that long to find the other Rs.) 2. Replace digestive enzymes. 3. Reinnoculate (probiotics). and 4. Repair mucosal lining. Everybody agrees that 1 comes first. Some do the rest in order, some do all the rest together. @caledonia has links to some good stuff in her signature, or you can google it, or you can look at this thread: http://forums.phoenixrising.me/inde...-and-sometimes-achieves-full-remission.13463/ For me, I did an enzyme/probiotic combination, and [TMI warning!] after 2 months got good stools (formed, brown) instead of bad (yellow/orange, containing particulates, fall apart when you flush.)

    OK, sorry to have more questions than answers, but I'm glad you have good doctors and good support. I'd be interested to know what your Rx for your SNPs turns out to be.

    Critterina
     
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  9. duncan

    duncan Senior Member

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    @Kiwi Jack , you say you were on abx for a couple of years for Lyme. Did you test positive for Lyme? If so, do you still test positive?
     
  10. Kiwi Jack

    Kiwi Jack

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    Thanks for your feedback. Unfortunately I'm in Canada and don't have access to many of the tests you mention, they just don't do them here. And the public health system does not allow direct access. There are a few private clinics in Canada but they are a few thousand miles away. So most of the thyroid lab tests I can't get done. And even if I did, endocrinologists would not treat. Woohoo, public healthcare. I match the symptoms of hypo thyroid but that's just my opinion, most folks with ME/CFS would I suppose. I match the symptoms of several exhaustion related illnesses, but that's not enough. I tried some thyroid medication, natural and otherwise, but no relief. I've tried several hormone treatments. I read several "experts", and it appears most do not agree. I moved on from the thyroid theory years ago. But who knows.

    My cortisol is high in the morning but non existent the rest of the day and evening. So I get a burst in the am but then the adrenals stop, probably worn out. But that's a saliva test and the local endocrinoligists refuse to acknowledge this test. They only test serum and it checks out fine. So again, woohoo public healthcare. I've done more than 1 saliva test and they don't all find the same results. So although I also have symptoms of adrenal fatigue, difficult or impossible to get any tests to confirm. I've also tried several adrenal specific therapies, but again no relief.

    I take testosterone shots IM. It's not provided any form of new and improved vitality. They refuse to do SHBG. So not much of a complete picture. But if that issue was primary, I'm sure I would have felt some type of symptom relief by now. I also tried testosterone cream a few years ago when I was focused on hormone replacement therapy. Other than making me a little aggressive, it did nothing for energy or exhaustion relief. So I think although I have hormone issues, they may be downstream effects of something else primary.

    As for the gut, I appreciate there are a lot of different theories, and every expert has another approach. I have no idea. I'm just doing what my Naturopath advises.

    I mentioned my Rx in an earlier post.

    Thanks,
     
  11. Critterina

    Critterina Senior Member

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    @Kiwi Jack ,

    Well, I don't know what to say. Please post what methylation supplements they put you on - it will be interesting with your interesting SNPs.

    Critterina.
     
  12. caledonia

    caledonia

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    Hi, just popping in so you can see my signature link, which goes to the SNPs Interpretation Guide, 4R Gut Rebuilding Program and other useful things.

    I would suggest the same as your docs - fix the gut first. You have to do all of the R's, not just some of them. Many docs don't do this. This is the best and most comprehensive gut program I was able to find - it was designed by the Institute of Functional Medicine.

    Some magnesium would probably be helpful both for muscle cramps and sleep, which should help some with energy, motivation and brain fog. Adrenal fatigue causes the body to lose electrolytes, so you need to replace them.

    You also have the B12 Double Whammy, so B12 is going to be an important supplement for you.
     
  13. Critterina

    Critterina Senior Member

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    @caledonia - what is that? I see the acceleration, but he's missing the MTRR A66G - only has the minor ones.
     
  14. caledonia

    caledonia

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    MTR + MTRRs, but maybe not so bad if he's missing the major MTRR.

    Heartfixer talks about the B12 double whammy.

    On closer inspection, the homo MTR is probably a bigger issue.

    In either case, B12 is going to be an important supp - note that he has neuropathy, which is a classic B12 deficiency symptom.
     
  15. Critterina

    Critterina Senior Member

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    Ok, that's what I saw, that he has two slow-downs and one speed-up MTRR, but not the major slow-down one. Thanks!
    There are lots of causes of neuropathy, and I agree that B12 is frequent in this population and a problem for me, but there are at least three other B vitamins that can cause it. And with his toxicity, gut issues, and sensitivity to methyl donors, he might not be ready for it - like him, I'm going to trust his naturopath. I'm sure B12 will come up.
     
  16. Kiwi Jack

    Kiwi Jack

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    Critterina and Caledonia -- thank you for all your feedback, I really appreciate it, I'm very thankful. This is a lot of information to absorb and my brain is only operating at 10%, but I intend trying to understand it. Thanks for taking an interest and sharing. Most of what you mention my Naturopath has suggested, I think, again having difficulty keeping up. I think my Naturopath said I need to avoid methyl donors for a while because of CBS or something like that. Initially I tried a large dose of supplements from an Orthomolecular type practitioner, which I believe included methyl donors and crashed severely. I visit my GP and Naturopath next week, first 6 week review, fingers crossed, not feeling any benefits yet, if anything a little worse, but I have hope.

    I have a question for you; since day 1, 14 years ago, I began having non restorative sleep problems, wake in a lot of pain, joints and muscles and almost feels like every cell in my body is screaming out, feels like a very bad case of apnea but that's been ruled out with several sleep studies, feels like I've expired and been recussitated which sounds extreme I know but that's it, I wake fully alert with no chance of sleeping in or dozing again, I fall asleep easily and peacefully, sleep onset is not a problem, but wake in this manner 4-6 hrs later, almost feels more like a sleep/wake transition issue, same thing happens if I nap during the day but then my sleep only lasts a minute or 2 and again wake in wrenching discomfort, like I'm being jarred awake, don't feel like I've slept at all, completely exhausted, morning saliva cortisol is high out of range so perhaps I'm getting a mega dose of cortisol and adrenalin, but why, what is going on? ... any ideas given my genes? I appreciate sleep is critical to recovery and mine is very bad.
     
  17. Critterina

    Critterina Senior Member

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    Fingers crossed for you!

    No clue as to your genes playing into your sleep issues. I have heard and had a bad experience with (so something for you to check out with your docs) phosphatidyl serine decreasing your body's production of cortisol. (Mine was too low to begin with, so don't be put off by my bad reaction.) Since yours goes high when you sleep, perhaps this is an avenue to investigate.
     
  18. Kiwi Jack

    Kiwi Jack

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    Thanks Critterina. I tried that but it made me feel worse, perhaps the same reason as you. Probably because I don't have a case of chronically elevated cortisol all day long. All my neurotransmitters are low in the 20-25% range especially dopamine 5% and I've read that can cause sleep issues too. Blocked detox pathways are a big problem so perhaps it's over toxicity at night. Hopefully this will resolve if the rest gets worked out. The quest continues...
     

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