1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

How to interpret 23andME results

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Spinney Lainey, Jan 31, 2014.

  1. Spinney Lainey

    Spinney Lainey Senior Member

    Messages:
    147
    Likes:
    35
    London
    I'm thinking about getting a 23andME test kit but was shocked to see that on top of the $99 cost, they are going to charge $79.95 for international delivery, as I live in London!!!

    Therefore, I need to know if it would really be worth it! My main concern is that after getting the result from the genetic genie, how would I interpret the results and know how to go about treatment?

    How have other people interpreted their results from genetic genie? Are there set protocols anywhere to follow?
     
  2. ahmo

    ahmo Senior Member

    Messages:
    1,445
    Likes:
    1,054
    Northcoast NSW, Australia
    Spinney Lainey and Critterina like this.
  3. Critterina

    Critterina Senior Member

    Messages:
    825
    Likes:
    383
    Arizona, USA
    @Spinney Lainey

    ahmo is right - there are programs like genetic genie, livewello, promethease, and others that help sort through to the nuggets of information that will do you the most good to address. Lots of people on this site have had to wade through their outputs to figure it out for themselves, and are willing to share what they've learned. Every so often you find someone with near identical SNPs and symptoms who has made progress in different areas than you have, and for me, that's the most likely to succeed.

    All that said, no one here is giving medical advice, so you have to decide for yourself how much to turn yourself into a guinea pig in your efforts to get well. Some will be no-brainers, but some carry risks. Trust your instincts and your body as to what is working for you and what is not.

    Crit
     
  4. WoolPippi

    WoolPippi Senior Member

    Messages:
    185
    Likes:
    357
    Netherlands
    Hi Spinney

    I also paid that much shipping. For that they do get your spit to the lab within a day and they come collect it at your door at any time you like, so that's good. I figured that the test itself is cheap so 180 for the whole chebang would be the price. And it was worth it.

    Results: genetic genie comes with an interpretation of your results for the methylation everybody's talking about. It will be quite enough to start with, let me tell you!
    It will adress about 25 mutations and it took me about four months to understand them properly. Now I am supplementing on them and on a roll. I'm getting results. All in all it's now six months after i put my dna-results thrpugh Genetic Genie and only now do I grasp my basic methylation (mutations). Genetic genie is free. Worth giving a donation to.

    Promethease -vis SNPedia.com- also comes with some sort od explanation and interpretation of your dna results. It looks at many many genes. It refers direct to scientific research per mutation. However, research is seldom straightforward so conflicting conclusions will be there. I think it's a quality of promethease that it shows them all.
    But yu have got to be comfortable with thruths-not-set-in-stone. It costs about five dollars. Worth it.

    That goes for all DNA research, I'm afraid. There are seldom certainties.
    Your dna redults will tell you for which genes you are double mutated. The enzymes they code for will probably work less efficient or not work at all. Supplementing on them will probably give results.
    But the bulk of your mutations will be genes with a single mutation. Finding out if and how much these cripple their enzyme's functionality is much more obscure.

    All in all it's a choice. 180 dollars for a bunch of information like a haystack: it will take some serious home work on your part to sort it out. There will be no one who can interpret your specific results precisely. But you yourself will be able to make some educated guesses, with our help and examples. If you think your ilness is at all related with ow your body copes with heavy metals, nutrients and energy at cell level then putting your dna results through Genetic Genie will be worth the 180 dollars. See it as the cost of a test. Only with this you get your raw data as a bonus which you can compare to any dna research out there now and in the future.

    I must say that not all dna will be readable by 23andme. Some they can't make out.

    If you feel your ilness has more to do with digestion or bacteria or anything else on a scale that's not cell level, then you might want to reconsider.
    Also if you do not want to know wether you have any of the kown heridetary diseases, the scary ones.
     
  5. Hip

    Hip Senior Member

    Messages:
    3,256
    Likes:
    3,148
    I think the question that Spinney Lainey is asking in this thread is whether the 23andme test (which costs around £110 in the UK including shipping), is worth paying for, in terms of the cost–benefits for ME/CFS.

    I have taken the 23andme test myself, and although I was pleased I did, as I learnt many interesting things, I cannot say that there was anything I learnt which provided any direct benefit in terms of treatment and amelioration of my ME/CFS symptoms.

    So if for example you have a limited budget of say £300 for ME/CFS tests, I suggest there would be more important and useful tests that you could order, such as tests for the infectious pathogens that are associated with ME/CFS (these pathogens include: coxsackievirus B & echovirus, Epstein-Barr virus, HHV-6, cytomegalovirus, parvovirus B19, Chlamydia pneumoniae and Giardia lamblia).

    I think the knowledge of whether you have an active infection with one or more of these above pathogens is potentially much more useful, since infections with many of these pathogens can be treated, or partially treated. Most of these pathogens can be tested for in the UK (at labs like TDL in London), with the exception of chronic coxsackievirus B & echovirus infections, which Dr Chia says can only be accurately tested for at ARUP Lab in the US, or by the immunohistochemistry test.

    Another useful test for ME/CFS patients might be a comprehensive digestive stool analysis, to determine if you have any overgrowth of pathogenic bacteria in your gut.

    Perhaps others here may suggest further tests which have a good cost–benefit ratio in terms of leading to an amelioration of ME/CFS symptoms.


    Though one's personal 23andme results are fascinating to read, and you may potentially learn some very interesting things about your health and metabolism, even though they may not directly relate to ME/CFS.

    The genetic health analysis provided by 23andme includes:

    • Your risks for developing common diseases (like MS, Alzheimer's, various cancers, etc).
    • Your inherited genetic conditions (ie, any genetic diseases or metabolic abnormalities that you may have — most people will have a few of these).
    • Your traits (like whether you are resistant to HIV, whether you are likely to have lactose intolerance, etc).
    • Your drug responses (how you respond to various drugs, and whether certain drugs might be more toxic to your metabolism than normal).

    Sadly I believe some of this health information is no longer offered on new 23andme tests, though still available for those people who got their 23andme results before the FDA stopped 23andme providing this health analysis interpretation of their genetic results. I am not sure what health information is still offered in new tests, and what health information has now been discontinued as a result of the FDA.

    The 23andme test also provides ancestry data, detailing where you genotype comes from geographically.

    However, to reiterate: in general, it seems to me that little of this 23andme info provides any direct benefit for ME/CFS. But others here may feel that they did gain benefits from their 23andme results. The reason I started this thread here was to determine whether any ME/CFS patients have derived major benefits from their 23andme test. It is possible that people on the methylation protocol for ME/CFS (which does seem to significantly benefit around 25% of ME/CFS patients — see this poll) may have gained some useful insights into the genetic blockages in their methylation as a result of their 23andme test, and may consequently have been able to better compensate for these blockages.
     
    Last edited: Feb 1, 2014
    Spinney Lainey likes this.
  6. ahmo

    ahmo Senior Member

    Messages:
    1,445
    Likes:
    1,054
    Northcoast NSW, Australia
    I did the Metametrix urine tests for metals and their Comprehensive, by mistake, as I should have done the UEE (? amino acids). I learned from these that I have metals and SIBO, so I adopted strategies to deal with them.

    However, most of my experience of tests, and of reading about others, suggests that most of the tests are of limited value. My thyroid tests are pretty useless; I now go by symptoms in altering my dosage. The blood test I requested from my GP to check MTHFR showed 1 SNP, which it labelled insignificant. My 23andme showed 2 mutations. My initial urine tests for copper and for histamine showed nothing significant, yet I have significant issues with histamines. The best part of that testing is that I was required to go low hist diet for 2 days before testing. My eczema cleared 50% in that period. And the Metametrix did show elevated copper. So the elimination diet showed me what I needed, not the urine test. And the other 50% was essentially alleviated by removing sulfur, though my sulfate strips have never been significant. that might be that I've been low sulfur since before I started testing. But they also don't show much when I'm having a detox reaction which is helped by my anti sulfur/ammonia supps.

    In one way, I could say the best part of 23andme testing is that I've solved the lifelong riddle of what was wrong with me. I despaired of never finding the cause(s). My methylation profile is like looking at a true horoscope: all my problems laid out to see. This profile helped my chart my way through Yasko's methylation protocol, showing me where to start to not overwhelm the system.


    It took me about a year from getting my genetic results to understand that MAO had something to do w/ histamines, not just behavior. This has been v significant. I now use a range of things to compensate for histamines, plus a low histamine diet. There's a lot of info at lowhistaminechef.com. Improving methylation certainly improves the ability to deal w/ histamines. However, I now understand that this will likely not just go away when I get everything right. It might be less severe. Presently I'm less distressed by histamine reactions than I've been for the decade of my illness.

    OK, I know deciding whether to test or not to test is not very easy. but I'm now far more committed to self-treating by symptoms than waiting for dubious test results. Best to you, ahmo
     
    Gloria H likes this.
  7. Spinney Lainey

    Spinney Lainey Senior Member

    Messages:
    147
    Likes:
    35
    London
  8. Freddd

    Freddd Senior Member

    Messages:
    4,579
    Likes:
    958
    Salt Lake City
    Hi Spinney,

    Let me say that I haven't had any of the tests so many here mention. I had most all the testing I had trying to figure out what was wrong pre 2000. Also, I figured it out based on symptoms analysis and have healed myself of FMS, CFS and congestive heart failure. I have had far better results than anybody seems to get as a result of lots of money on lots of tests and maybe a few more or less helpful interpretations. However, with many people figuring they should not take MeCbl and AdoCbl and should take HyCbl, they prevent themselves from healing 80% of the b12 deficiency symptoms they have. There was a tendency to call low potassium and paradoxical folate deficiency "detox" instead of correcting the induced deficiencies and flags of healing, so many have used the tests to avoid the probability of healing. To be it seems awfully counterproductive spending lots of good money to logically keep ones self from healing. Many here will disagree with me. I'm just giving you an honest opinion. I no longer have those problems. I still have damage from a car crash and some sub acute combined degeneration, damage from prolonged b12 deficiency because so many docs believed in CyCbl and Folic acid and their precious tests that not even one of more than 100 were able to correctly diagnose or treat me. I worked in the group healthcare field as a systems analyst and consultant since the late 70s. let us say that too much experience has caused a complete loss of faith in tests normed on a population with chronic b12 and folate deficiencies so that the abnormal has become normal. The system is working to preserve deficiencies and their diseases now. They are the new chronically ill "normal".
     

See more popular forum discussions.

Share This Page