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May I borrow your brains, please? (23andMe results)

Discussion in 'Genetic Testing and SNPs' started by Wintering, Aug 12, 2014.

  1. caledonia

    caledonia

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    It's all in the SNPs Interpretation Guide I sent you.

    You would start with the First Priority mutations. For you, that would be ACAT, and possibly a trial of folinic acid for SHMT, then CBS. You only need to treat CBS if it's expressed (causing problems). There are a couple of tests you can do along with signs and symptoms to see if CBS is expressed.

    Or you could do what I did, which was "bass ackwards" - I skipped over CBS and started adding methylcobalamin, and started having anxiety on an amount even as low as 1mcg (yes, that's microgram and not milligram). Then I had to go back and do CBS treatment. Then I was able to tolerate methylfolate at higher amounts.

    If I had bothered to do testing, I would have seen a high value on a urine sulfate strip beforehand and saved myself some suffering. That's why Amy Yasko developed this method after working with thousands of patients.

    So just start at the top of the document and work your way down, one SNP at a time (as it applies to you).

    Start with very low doses as described in Start Low and Go Slow. If you run into problems, see if you can find a description of how to debug it in Roadblocks to Successful Methylation Treatment.

    If not, come on here and start asking questions.
     
    Wintering likes this.
  2. Critterina

    Critterina Senior Member

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    Yes, I read that first, too. I can't honestly say that for sure you'd feel it. My personal data was obscured by the fact that I stopped taking NAC at that time.

    For what it's worth, I was recommended magnesium glycinate. It works for me (per changes in lab results). Some people have better results with different Mg compounds (and glycinate is bad for some.) You might want to try different compounds.

    It was. I didn't like that they didn't give me numbers, just high and low, but the recommendations were interesting. I really respect Caledonia, but I do disagree with her on some things. She would know better than I what people with ME/CFS tolerate. I just don't see you being a candidate for methyltrap with your heterozygous MTRR. She is right about B12 being better taken sublingually (or injection). I thought it was that it loses it's methyl group in the GI tract, but since you're hetero, I wasn't worried. I could be wrong there, though.

    So, this isn't really a fair question for me. Yes, I'm like 100% of what an average person can do, but two things have to be added in a disclaimer: (1) I never had ME/CFS, and (2) I used to be superhuman, and now I'm only human. Of course, then why am I here? I was really sick for what seemed to me a really long time, confusing the heck out of the doctors. I came here looking for answers and I got them.

    I don't remember who gave me the article about histamine intolerance, but it meant that I could get back to full lung function without meds (When I was sick, I was at 80% by spirometry of the highest I've measured.) The meds had intolerable side effects, and we had run through all the options. Enough oxygen took away the brain fog.

    And Ema gave me two articles that showed that my short cosyntropin test results were abnormal, even though I was told they were normal. That probably saved my life, as I had many symptoms, to the point of arranging a ride to emergency before I tried 20 mg of prednisone (the only breathing med that seemed to work, that also relieved the AI symptoms.)

    The other part of the adrenal issue is that the adrenals are responsible for sex hormones in post-menopausal people like me. My testosterone had gotten to undetectable levels. Then, even if you can get out of bed, you don't really care if you do or not. In March, I was physically able to walk 2 miles every other day, but I couldn't do much more. Then I started on DHEA oral, over the counter (per my endocrinologist's instruction.) In 3 days, I was able to walk 4 miles per day! In a week, I was able to walk 6 miles (with 500 ft elevation gain) every day and do other things the rest of the day. The 9th day I did a 10K walk. So, I'm not doing the 10-hour hikes in rocky trails with half a mile elevation gain, then going on the next day as if I'd been at a computer the previous day. That was the old superhuman me. And I have overdone it recently (dug up and transplanted a tree, scrubbed my shower, made cookies, and then hauled over 60 gallons of rain water in 5 gallon buckets - I deserved not being able to move the next day!) so I'm still finding my limits. I started on a more complete BHRT this week, for better strength and stamina, and I hope it will remedy my missing libido.

    So, yes I'm pretty close to tip-top. And I continue here because people really helped me and if I can help by offering my interpretation, I will. Yes, there are differences of opinion, and that means you have to weigh what different people say and maybe look at the research yourself. But that's part of taking responsibility for what you do, especially in terms of supplements.

    I wish you the best!

    Critterina
     
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  3. Critterina

    Critterina Senior Member

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    Oh, and this isn't to say that I'm not still learning. There is a lot of fascinating stuff here, and you never know what will help. An example from today: I have had low blood sugar from time to time since my teen years. (My mom ate per schedule, so it wasn't until I was a teen that I actually went long enough for my blood sugar to plummet.) The pulmonologist suggested a 3 day water fast to reset my immune/allergy issues (now known to be histamine intolerance), but as 5-7 hours was the longest I could go without eating before I got sick, and it was only sometimes 1.5-3 hours when I had the really bad adrenal issues. Now that I'm on prednisone, my blood sugar is really stable. In fact, I saw a thread on fasting, so I decided to give it a try. I only had a bowl of cereal and milk for dinner last night, and I skipped breakfast and measured my blood sugar at noon: 92. Hooray! I'm still fasting. After 2 weeks on prednisone, I had been lapsing to 65 an hour after breakfast. I was OK at 65, but not for too much longer, as it continued to drop. With prednisone, it has continued to improve. Today, it's after 3 pm, I'm fasting, and I'm still not having low blood sugar. I probably won't do the 3 day water fast right now, but seeing that I can go this long is real progress.
     
    Wintering likes this.
  4. Wintering

    Wintering

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    Hi again @caledonia and @Critterina,

    *an update*:
    Since two separate (mthfr suggested) doctors told me to try the supplement, I did..... for 5 days. As suspected, my symptoms worsened. :( (more brain fog, breathing trouble, and even more fatigued) Groan .....
    I know I need to go low and slow or pay the consequences, but I (and the docs) are worried about my homocysteine level, so I gave it a try. (guinea pig, who me?) ;)
    Do you think adding this: http://www.seekinghealth.com/adeno-b12-60-lozenges-seeking-health.html would balance everything out? (I'll cut them in half) I'm hoping this will help my BHMT, ACAT, and COMT while bringing down my homocysteine level. (I couldn't find hydroxy B12) Yes/No/Maybe?

    Thank you for being here,
    Wintering
     
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  5. caledonia

    caledonia

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    Unfortunately, sometimes you have to try things to please your doctor, even though you know better. Been there.

    Adenosyl is a good thing to take for your mitochondria, but I've never heard of anyone having success with methylation by taking that alone. You need to either take methylcobalamin or hydroxycobalamin to get those methyl groups.

    Yasko makes two different sublingual hydroxycobalamins - one is a liquid and one is a lozenge. http://www.holisticheal.com/catalogsearch/result/?q=hydroxy
     
    Critterina likes this.
  6. Critterina

    Critterina Senior Member

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    @Wintering ,
    Did you try the doctor's supplement with extra methylB12? Enzymatic Therapies brand would be a good one, and a dose would be more than the methylfolate by a factor of 3-5, per other people's suggestions.

    Sorry it didn't work! Hope you are feeling better.

    BTW, we are ALL guinea pigs here. :hug:
     
  7. Wintering

    Wintering

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    @caledonia , thank you AGAIN!
    ....*giggle* .... I had to look up mitochondria, so I don't think that's my #1 focus right now! I tried to find Dr. Ben's Hydroxy B12, but they are out of stock. (just my luck, eh?) ;) So I will order Dr. Amy's HYDROXY B12 MEGA DROPS I'm thinking (with that last remaining brain cell) to start off with the Hydroxy B12 to support my ACAT, COMT, VDR, and BHMT - first, (my CBS doesn't seem to be a factor - yet) and then add the Homocysteine support a week or two later? (PLEASE correct me if I'm wrong) Ahem, now that I've experienced the 'consequences' ..... baby steps, right? Don't 'cha just love how doctors are still "practicing"? ;)
    Big hugs,
    Wintering
     
  8. Wintering

    Wintering

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    Thank you so much @Critterina for checking in on me! {{{hugs}}} To answer your lovely question ..... no, I just tried the Homocyseteine supplement alone. Dagnabit, I had hoped it would help ... but waaaaa. :( Would adding the Enzymatic Therapy brand of Methyl B12 help? (From my snps, I think I need Hydroxy) Would you suggest both at the same time .... or just start with the B12 for a bit first?
    From one guinea pig to another - thank you for being here!
    Wintering
     
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  9. caledonia

    caledonia

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    Technically, you would want to support ACAT and possibly SHMT first by doing ox bile and a trial of folinic acid. You've ruled out CBS as a problem, so then you could go onto MTHFR and the rest.

    Your homocysteine supplement + the B12 would support MTHFR, MTR/MTRR and BHMT. (Although you're missing some co-factors.) Make sure you have some niacin and potassium on hand before you start, as you may need these suddenly if adverse symptoms occur. Magnesium is also an important co-factor.

    Yasko suggests hydroxycobalamin + adenosylcobalamin for your B12.
     
  10. Wintering

    Wintering

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    Thank you @caledonia,
    Gosh, I sure hope phoenixrising pays you a huge salary, since your knowledge & support is priceless. {{{hugs}}}
    Since I don't know my SHMT status (not on the 23andMe report) and my ACAT is +/- (and apparently needs B12) would you suggest I start with the hydroxycobalamin first? (since it's at the top of your list!) The Homocysteine support they later suggested (Dr. Ben's HomocysteX Plus) does have adenosylcobalamin along with the methyl:
    Riboflavin (as riboflavin-5-phosphate sodium) 25 mg 1471%
    Vitamin B6 (as pyridoxal-5-phosphate) 15 mg 750%
    Folate (as Quatrefolic (6S)-5-methyltetrahydrofolic acid, glucosamine salt) 800 mcg 200%
    Vitamin B12 (as methylcobalamin, coenzyme B12) 1000 mcg 16667%
    TMG (trimethylglycine) 700 mg **
    I do have niacin and magnesium on hand, but I'd better run (well ... my running days are long gone!) out and get some potassium. From your amazing knowledge and experience ..... would you suggest introducing the Hydroxy B12 first, then add the Homocysteine support - or both at the same time?
    With grateful hugs,
    Wintering
     
  11. Critterina

    Critterina Senior Member

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    @caledonia,

    Do you understand why Yasko would suggest folinic acid for someone with MTHFR C677T? I don't get it. The whole point of MTHFR C677T is that it prevents efficient conversion of folinic acid into methylfolate. I understand that's what she says - but to me it doesn't make sense. Can you explain it, please? Thanks!
     
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  12. Critterina

    Critterina Senior Member

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    Either hydroxy or methyl B12 - it turns out that there are several people on here who, by virtue of their SNPs "should" have trouble with the methyl but don't. I think we don't have a good handle on what causes problems. But to be safe, 'hydroxy' is fine. Once you get everything stable using the hydroxy, you might want to trial the methyl as a substitute for a day. But you're the scientist AND the guinea pig here, so you decide.
     
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  13. caledonia

    caledonia

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    I think I would start with hydroxy first for a few days, then if that's going well, add the HomocysteX.
     
  14. caledonia

    caledonia

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    It's not a black and white thing. If you have one copy of MTHFR C677T, you still have a 60% or 70% capacity to convert it. If you are hetereo MTHFR C677T and A1298C, 50% capacity to convert it and if you're C677T +/+ there is still a 30% ability to convert it.

    Also Yasko is famous for her "sprinkles" of this and that. I doubt if she's recommending that you take only folinic acid, or that you take large amounts of folinic acid.

    This is also the rational she uses for including a bit of folic acid and folinic acid in her All In One Multi (along with methylfolate and quatrefolic). Some of these would convert faster and some would convert slower. In some cases, such as COMT, it could be a good thing if methyl groups converted slower.
     
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