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Seeking thoughts and pointers on my 23andme results

Discussion in 'Genetic Testing and SNPs' started by Bluebell, Jun 19, 2013.

  1. Bluebell

    Bluebell Senior Member

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    I misunderstood! I thought you were talking about putting together a set of lab tests that people should do. (Like the "methylation panel" of Health Diagnostics which I remember that Rich had advised doing.)

    Now I understand that you are putting together SNP results, and not lab test information. :)

    ---
    Although, it might be an idea in your results to note down for each important SNP if there are specific lab tests that are good to do for that person's allele pair. For example, "BHMT-08, TT alleles: baseline blood test for x, yearly urine test for y" or whatever.

    That is probably very complicated and beyond what you are putting together at the moment, but it would be so handy for a lot of people.
     
    Valentijn likes this.
  2. Bluebell

    Bluebell Senior Member

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    Thank you for the google-based roadmap - I had not seen it before and it looks full of good information!

    Last month, I went through the phoenixrising stickied lab testing thread(s) that you pointed me to, as well as lab testing recommendations on other websites, and recorded every name of every test that was mentioned, then put them all into a spreadsheet and marked if any of several "experts" had also recommended the test (like the Canadian Association for such-and-such, the Medhelp site about such-and-such illness, a thyroid specialist, Dr. so-and-so....) and whittled the list down to tests that sounded possible for me (there were some really expensive ones that I wouldn't be able to do, and some that are only orderable by a physician) and that were likely to be of help. I also had to consider whether the result would mean anything to me without having a doctor's analysis of it, and whether there would be any practical value in knowing the result (would I be able to do anything to correct a bad result, or would it help me identify with certainty health problems that I've only suspected up to now). Then I started to price the ones that were left in my list with lab test companies that allow individuals to order their own tests without a doctor's intervention. That's where my progress slowed down, because you can't compare those tests and prices too easily, and each testing company makes it really complicated because they put their tests into so many different bundles, making like-for-like price comparisons hard.
    I know I'm making it too complicated and have reached a rare but predictable point of stuckness for me, where perfectionism and thoroughness collide with a situation that has too many variables :rolleyes: and then I freeze into a holding pattern slightly removed from the situation from brainfogginess and fatigue. But I need to save money and can't get everything that sounds good so I have to choose wisely and economize but there are so many tests I think probably would be quite good to have done, and often a blood technician finds it hard to get a good vein in me and I really don't like being prodded with needles on one arm then the other then back to the first to try again, so I want to just do all the blood draws at the same time.
    "step away from the computer Bluebell, put down the mouse, get on your jammies and go to bed" :sleep:

    ---
    i kept thinking that this phoenix rising emoticon character below was a lady in a burka!

    really i did, ha ha.

    but i've just seen in the emoticon descriptions that it's supposed to be a "ninja".

    :ninja:

    i suppose it's because i don't play video games that i don't know what a ninja is supposed to look like.
    (at least what a ninja is supposed to look like in the imagination of an american "millenial", or whatever the age group is which probably does website composition.)
    well, i did play the video game of "teenage mutant ninja turtles" a few times several decades ago... and those ninja turtles looked *nothing* like this emoticon. sheesh.
    what emotion is conveyed by putting up a ninja smiley face anyway. i do not know. menace? no, this little person just looks confused and too warm underneath its balaclava thing.
    "step away from the computer, bluebell"
     
  3. Valentijn

    Valentijn Activity Level: 3

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    If you have to pick and choose, I'd suggest taking a close look at your symptoms and what's most likely to cause them, in the context of what's already been tested. People on the forum might be able to help with suggestions, if you post a thorough but ME-friendly list of those things somewhere.

    And if you have a lot of spare time, you can look up the genes associated with common ME co-morbidities and see if you have them :D
    I have the same problem ... probably a really nasty combination of OI-related problems and soft tissue swelling. I've had blood taken from the hand a few times when the vein was hiding, and although it sucks, it sucks less than being prodded and poked in both arms for twenty minutes, going home, coming back, and another 20 minutes of poking and prodding. So now I just tell them to go for the hand if they can't find the arm vein :p
     
  4. Bluebell

    Bluebell Senior Member

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    I only act as if I did, but I don't really! :p


    Yes, I do the same, but what I've noticed is that the technician then finds my offer to just go straight for the butterfly thing on my hand to be a professional challenge to them to find an elbow vein in me, no matter what it takes.

    I will have to say that the last lady who took blood from me (last year) was really good and managed a gushing arm vein on the first try. But I have years of having the opposite experience.
     
    Valentijn likes this.
  5. Bluebell

    Bluebell Senior Member

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    Below are some informational links that I have collected.

    Note: I cannot say whether any of the following material is accurate or not, or if it is accepted by the medical community/researchers/specialists/campaigners/patient groups/etc. -- I am just learning about this health condition!


    Dr. Rich van Konynenburg 2011 presentation in Sweden, part 1 - document http://iaomt.media.fnf.nu/networks/iaomt/IAOMT_talks_Rich_Van_K._2011__Part_1R.pdf

    Dr. Rich van Konynenburg 2011 presentation in Sweden, part 2 - document
    http://iaomt.media.fnf.nu/networks/iaomt/IAOMT_talks_Rich_Van_K._2011__Part_2.pdf

    Dr. Rich van Konynenburg 2011 presentation in Sweden - video
    http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/

    Dr. Rich van Konynenburg Revised Simplified Methylation Protocol (August 25, 2012 Revision) - forum posting
    [Apparently this was his last version of his protocol before his untimely death] http://forums.phoenixrising.me/inde...ation-protocol-august-25-2012-revision.19050/

    Dr. Stephen Smith mindmap of MTHFR - document
    http://www.mindmeister.com/12694596/mthfr-related-health-problems

    Dr. Ben Lynch - video
    http://www.seekinghealth.com/natural-health-video/methylation-defects-and-mthfr.html

    Dr. Ben Lynch - podcasts (some are very recent - from June 2013)
    http://www.seekinghealth.com/learning-center

    Dr. Neil Rawlins MTHFR protocol - document
    https://docs.google.com/viewer?url=http://www.rawlins.org/mthfr/MTHFR%20protocol.doc

    Dr. Neil Rawlins - video
    http://www.methyl-life.com/a-doctor-explains.html
    http://www.renewashoe.com/medical/

    Life Extension organization on some of the relevant supplements (discussed in the context of reducing homocysteine) - articles
    http://www.lef.org/protocols/heart_circulatory/homocysteine_reduction_02.htm?source=search&key=mthfr
    http://www.lef.org/magazine/mag2009...aking-You-Sick_01.htm?source=search&key=mthfr

    Dr. Mark Hyman on glutathione - article
    http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html

    Dr. Sarah Myhill (based in the United Kingdom) on the methylation cycle - article
    http://drmyhill.co.uk/wiki/CFS_-_The_Methylation_Cycle

    Dr. Amy Yasko Pathways Book - document
    http://www.holisticheal.com/media/downloads/autism-pathways-to-recovery-book.pdf

    Dr. Amy Yasko Pathways Book's accompanying Workbook - document
    http://www.holisticheal.com/media/downloads/autism-pathways-to-recovery-workbook.pdf

    Dr. Amy Yasko - 17 free documents
    http://www.scribd.com/DrAmyYasko/

    NW Integrative Medicine on MTHFR - article
    http://www.nwhealthcare.net/index.php?id=64

    Chris Kresser on B12 Deficiency, first article
    http://chriskresser.com/b12-deficiency-a-silent-epidemic-with-serious-consequences

    Chris Kresser on B12 Deficiency, second article with simple protocol
    http://chriskresser.com/what-everyone-especially-vegetarians-should-know-about-b12-deficiency

    Dr. Bill Walsh on overmethylation and undermethylation - videos
    (Scroll down to find them - these videos are in the middle of the list of videos. I had problems linking to them directly here.)
    http://www.walshinstitute.org/Video.asp
     
    Jarod likes this.
  6. Bluebell

    Bluebell Senior Member

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    Update: I ordered my blood/urine tests and have now received the results - there are some pretty unexpected results, and a few are worrying to me.
    Since not many people have noticed or contributed to this present thread, I have described my test results and asked for help with understanding them and what to do next in a new thread on the Doctors and Diagnostics/Lab Tests forum: http://forums.phoenixrising.me/inde...-i-would-be-grateful-for-some-guidance.23975/
     
  7. Dufresne

    Dufresne almost there...

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  8. Valentijn

    Valentijn Activity Level: 3

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    It is $99 from 23andMe, but not a special anymore - it's their regular price now. Much of the information isn't relevant, but a lot of it is, or could be.

    Yasko does methylation/detox specific testing of 30 or so SNPs, but much of it is irrelevant, and 23andMe seems to cover most of the same relevant SNPs, plus many many more. That one costs $495.
     
  9. Bluebell

    Bluebell Senior Member

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    Dufresne, I've found the 23andme results, both the health information and the ancestry information, to be worth $99.

    Not only does 23andme look at a large set of one's individual genes and provide the list in a file that you can download and keep, and do whatever calculations you want to with it, they also will keep you updated for a time (I don't know how long, maybe a few years?) with any new genetic discoveries that they find and how this relates to your genes.

    The health information looks at much more than the methylation/Yasko areas -- there is a wide range of diseases and characteristics that they look at.

    Some are good to know for health reasons, and some are just interesting.

    For example, it says that I'm genetically predisposed to carry 4.5 pounds more than the average person, and also that continuous aerobic exercise and diet will have no effect on my body mass! (I always said it was my metabolism that some people can eat a whole cheesecake and work it off by vacuuming the house for 20 minutes and taking out the trash, while I can look sideways at a bowl of radishes and go up 2 pounds, which wouldn't come off after 3 weeks of aerobics classes. :D)

    I also was quite moved by my ancestry information, because I don't know very much about my maternal line and the information about their probable geographic origins was poignant to me because those few areas of the world are dear to my heart anyway (independently so).

    As Valentijn said, 23andme reports on most of the Yasko genes, and it's much cheaper. I think that there are free programs online that you can run your 23andme data through which will give you approximations of Yasko's results, using her notations and terminology.
     
    Valentijn likes this.
  10. greenshots

    greenshots Senior Member

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    Something very important to think about is that alone, none of the snps may be a big deal but in combination with others, it may be very different. I don't think the MTHFR or ACAT by itself is always a big deal but when you've got a bunch throughout the system, MTHFR, CBS, BHMT, and ACAT, it might be completely different. Many of these provide back ups for others, like the BHMT being another way to process out homocysteine, not just MTRR. So what happens when alotta them are out or working poorly? Its more likely to snowball. Especially if you have a bunch of toxic exposures or infections. I think this is where Yasko sorta looks at a broader picture whereas each scientist studying one single snp is only looking at a single variable. I do not think its necessary to follow Yasko lock stock and barrel cuz it is WAY too much! But I also don't think it should all be entirely discounted when no one else has looked at the whole lot of them working together or treated chronically ill people based on them.
     
    brenda likes this.
  11. MMe

    MMe

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    And that's exactly the point where I get stuck. It's too complicated for me, really. :( (although I do have a university degree...)

    I've asked it already a few times: who will help to make (a piece of) my 'puzzle'?? Any advice is welcome...

    Sorry for repeating myself...:oops:
     
  12. Bluebell

    Bluebell Senior Member

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    MMe, I really get what you are saying -- these bodily/chemical/magical systems are just not something that I can develop a sophisticated working image of in my mind.

    I could look at the diagrams all day, but seeing that there's a long way around and a short way around to xyz does not say to me, "Oh, I've got a shortfall in my whatchamacallit gene, so if I drank a tincture of gooseberry leaves upon awakening, this bottleneck would clear right up and bathe my left ventricle with oxytocin." :p

    Part of it comes down to having a good grasp of biology, I think, which not every person does. I definitely don't.

    In undergraduate university (back in the mists of time, around the time that Mendel was doing his stuff with peas :p ), I took two classes on genetics, but they were from an unusual angle -- they were not the hardcore, laboratory-based courses for the hard-science and pre-med students, they were lecture and reading-based and only meant for the arts/humanities/social science students to take, to broaden their perspectives. So that side of the genetic testing results is still incredibly complex to me, but I understand a little bit, enough to skim articles and try to pull out the comprehensible stuff.

    As I wrote in another thread, the methylation process in the body is like a complex sports car engine that just looks like a jumble of parts to me -- I know how to fill up a gas/petrol tank, I know how to turn the key in the ignition, but do not ask me about pistons and horsepower and to change the brake fluid on my own, or whatever. As Greenshots said, it must be considered from a system-wide perspective because everything is so interrelated and the whole operation can be influenced by tiny, tiny shifts at any one spot. This is where having an expert's advice about one's personal situation, and being given a schedule to follow (what supplements, what daily behaviors, what diet/nutrition), can be so helpful.

    That's the "value added" of a complete offering such as Yasko's or that of the Ohio doctor who runs the website heartfixer.com, and it's well worth the expense to many people to get that kind of analysis done. It can be expensive, it can be a blend of art and science (that not every other researcher or doctor might 100% agree on), and it also may not help everyone, but many people learn a lot from it and are physically helped by it - especially if, like Greenshots, they pick and choose the areas of the programs that seem to work best for them, seem to make the most sense, and offer the most financial value, and focus on those.

    I have been a little concerned about giving my 23andme file to complete strangers, so I haven't put my data through online diagnostic programs like promethease, geneticgenie, the program of a female blogger who charges about $20 that I don't remember the name of, and others, but this is definitely something you could do to get some pointers. The blogger I mentioned also does telephone coaching based on one's results, I think, and some people have said that having a session with her helped them know what to do. I am not sure that she has a medical background, though -- but I don't really know anything about it.

    You could also find one of the doctors/naturopaths etc. who work with this kind of thing, and become a patient of theirs for one-on-one consultations and testing. That would probably be ideal, but expensive.

    You might want to look at the internet resources I listed in several posts above this one, which do have good information in them. See what recommendations they have for your specific genetic results.

    There is only so much that other forum members can advise on without straying too far into giving medical advice without having a good-enough understanding of the individual's overall health, and the requests for help with genetic results seem to have become more frequent here as more people take the 23andme test, so the senior members who have the most knowledge are probably not going to have time to help everyone, especially the newer members with whom they don't already have a history of interacting in the threads. I was lucky that Valentijn was so kind to give me a lot of her insights and time on this thread, but I didn't receive pointers about my genetic results from many others who have experience with the methylation genes, which was a disappointment, but completely understandable.

    Another thing you can do, which I have done for some of my blood test results, is to search this forum for past threads where someone said they had a similar issue to yours (whether it's being homozygous for a MTHFR mutation, having high homocysteine, or whatever), and other forum members have given them extensive advice about it.

    There may be other discussion forum websites where similar issues are talked about, but I don't know this area well so I couldn't recommend any.

    So -- study as many online educational resources as you can find, look at what the past forum advice has been to people who have similar genetic results to yours, run your 23andme data though a couple of online programs, and consider seeking expert help via a one-on-one consultation with a professional or via the Yasko testing/written-advice package. :)
     
  13. Bluebell

    Bluebell Senior Member

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  14. MMe

    MMe

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    Bluebell, you're 100% right! :)
    It's just that given the fact that I'm at this moment going through perimenopause, I just can't figure out where to start. Digging deeper into methylation issues? Focussing on hormones? Everything is related...
    I was a very happy person, I loved laughing, having fun. Until perimenopause hit me. How do the hormonal changes affect my gene-expression? It's so complicated...

    I have this gene constellation since my birth, so what has happened that I suffer now from high norepinephrine? (I've tried several supps to lower it, they don't work...)

    There's very little info on how COMT ++ and MAO ++ can be adressed...
    And I cannot afford another (expensive) expert. I'll have to figure it out myself...

    Tnx for the methylation links, I've read the most, not yet all of them. But I'll keep reading, reading, reading... ;)
     
  15. Bluebell

    Bluebell Senior Member

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    :thumbsup:

    By the way, this evening I added more links to my list of reference material - see the last post in that thread for my newest list.
     

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