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Cross-post: 23andme worth it, if 677 and 1298 tested as normal/normal? (Long-time fibro sufferer)

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by UsableThought, Feb 11, 2013.

  1. UsableThought

    UsableThought

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    New York
    Basically I've had fibromyalgia for 20 years (I'm 55) and all the fatigue, sleep, muscle aches, fuzziness, etc. that come with it. I've also had peripheral neuropathy in my feet for 5 years, of unexplained origin.

    Last month I started wondering about B12, so I got my doc to do bloodwork for serum B12, MMA, and homocysteine. The tests came back with high normal serum B12, but also with homocysteine out of range on the high side (14.9). This led me to read up on the subjection of MTHFR and methylation. I have started taking methyl-B12 (5,000 mcg daily) and also methylfolate (I'm now up to 8 tablets daily of the Solgar brand). It's been several weeks now but I have not seen any improvements in my symptoms.

    Lastly, I also got my GP to do the blood test for the two most common MTHFR mutations, which I gather from reading are for 677 and 1298. This test just came back today as "normal/normal."

    So, here's my question: Given that I have had no obvious response to either the methylfolate or methyl-B12, and that I am "normal/normal" for the two most common MTHFR mutations, should I give up investigating the possibility of genetic SNPs in relation to my fibro and fatigue symptoms? Or would it be worth it to order the 23andme test, since reportedly there are quite a few other potential gene variations besides 677 and 1298?

    Any advice appreciated - this subject is very new to me. I was really hoping the MTHFR would come back positive so that I had a possible lead on treatment, but on the other hand I don't want to get on a wild goose chase.

    - Randy

    P.S. I have also posted this question in the "Genetic Testing and SNPs" forum - below is the link, in case it's easier to respond there rather than here:

    http://forums.phoenixrising.me/inde...normal-normal-long-time-fibro-sufferer.21792/
  2. Sea

    Sea Senior Member

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    NSW Australia
    Welcome Usablethought, I don't know enough to offer any advice but there are others here who will.

    Having 2 threads with the same question is most likely not against any rules, but I find it very confusing to keep up with once there has been some discussion on each thread. I'd put a link to your other thread before any discussion gets started and keep all the responses on one thread.
  3. caledonia

    caledonia

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    I just saw somebody's SNPs on here and I was surprised that they didn't have MTHFR, but they did have CBS, MTR, I think, and some other stuff. So it's possible to have FM, CFS, etc. and not have MTHFR.

    The form of B12 is very important. An oral tablet is extremely ineffective. Only something like 2% absorbs. Liquid drops under the tongue, a sublingual tablet, or an injection (anything that bypasses the stomach) is best.

    Also with taking such high doses of methyl folate, you might be getting into methyl trapping which actually stops methylation. You're supposed to take more B12 than folate to avoid this.
  4. UsableThought

    UsableThought

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    Thanks - I've edited to put in a link in case people want to comment in that thread & not here. Hope that helps.
  5. caledonia

    caledonia

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    I sort of got interrupted on my reply. So if you're doing the ineffective oral B12, what I would suggest is stop everything and give it a few days to clear out. Then restart with some sublingual or liquid methyl B12. I would start small 50 to 100mcg? in case there is going to be an adverse reaction. I had no reaction to B12 until I switched to liquid - then BAM, I got a reaction, which was a stress response due to my CBS mutation. You should notice something within a few days.

    If that happens, you can take a small amount of extended release (non flush) niacin to stop the reaction. Like 50-100mg. NOW brand is a good one. It's 500mcg, so you only need part of a pill. So have some of the niacin on hand before starting the B12; it may save you a lot of grief.

    And yes, I didn't say this specifically before (just sort of implied it), but I suggest getting 23andme testing for your other methylation SNPs. I'm guessing you may have some MTR/MTRR mutations (affects B12).

    You can also get the HDRI methylation panel to get a functional view of how your methylation cycle is working. The SNPs only tell you potentials. They may or may not be expressed. The HDRI panel will tell you if they're actually expressed. But then the SNPs will tell you how to customize your treatment if they are expressed.
  6. UsableThought

    UsableThought

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    Hmm, I actually take sublingual B12 - 5,000 mcg of the Jarrow Methyl B12, and a few days ago I added 1 tablet of the Source Naturals dibencozide, which is also sublingual and 8.6 mg. I will stop taking so much methylfolate - I can cut it back to 800 mcg or even 400 mcg.

    So presumably I don't need to try liquid, since I am already using sublingual B12? Or are you saying that at least in your case, even sublingual B12 did not give you a reaction, but liquid did? Again, this is all new to me. For example with sublingual, I've read posts where people talk about keeping the sublingual tablet in their mouth for an hour or so - whereas with me, the tablets last only about 5 to 10 minutes even if I keep them tucked under my tongue and don't move them. So I'm not sure how much direct absorption I'm really getting with a sublingual.

    Thanks, I will definitely get the 23andme testing and start there.
  7. caledonia

    caledonia

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    Cincinnati, OH, USA
    I'm not as familiar with the sublinguals, but I did a little research, and the Jarrow should be effective. Yes, so try cutting back on the methylfolate and see what happens.
  8. triffid113

    triffid113 Day of the Square Peg

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    Michigan
    YES. Order 23andme. You cannot guess which mutations you have. I would have guessed I had a single MTHFR677 mutation but in fact I have 18 mutations and that is the only one of consequence that I do NOT have!
  9. UsableThought

    UsableThought

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    Thanks, I have in fact ordered the kit - I sent in my spit last week & so now I have 6 to 8 weeks till they culture it up & give me a report (assuming my spit is the "good" kind with enough cheek cells).

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