23andme

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This topic contains 60 replies, has 2 voices, and was last updated by  Karen 4 months, 3 weeks ago.

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  • April 12, 2012 at 4:46 am #1883

    Thera

    Hi Dr. Ben,

    I have heard people mention on here that the website http://www.23andme.com can do mthfr and other snp testing along with hundreds of other genetic and other pre-dispositions by just testing your saliva. I already know I am homozygous c677t but was thinking it would be worth it to get all those other things tested. Have you heard of it and what do you think about it? Thanks.

    April 14, 2012 at 10:00 pm #1907

    Ann Turner

    Yes, 23andMe tests for C677T as well as A1298C and many other mutations (SNPs), a total of close to 1,000,000. You can create a demo account to explore the 23andMe website.

    You will need to know the reference SNP number to find your data. There are also several community threads discussing these mutations, which you can find by searching the site for rs1801133 or rs1801131.

    https://www.23andme.com/you/explorer/snp/?snp_name=rs1801133

    https://www.23andme.com/you/explorer/snp/?snp_name=rs1801131

    May 8, 2012 at 6:16 pm #2079

    Jack

    I am trying to decide if Spectacell or 23andme is the better first test. If both test for C677T as well as A1298C, then it would be beneficial to do 23and me to gain insight into many other SNPs that could be influencing my health.

    I am trying to confirm if 23andme tests for A1298C. I believe they do, but you have to search the raw data for the result, unlike C677T which is highlighted in the provided report as Neural Tube Defect. I search the sample raw data and was confused because at rs1801131 I expected to see an A to C variant, but instead see this:

    Gene Position SNP Versions Genotypes
    MTHFR 11777063 rs1801131 G or T GT Lilly Mendel (Mom)
    GG Greg Mendel (Dad)

    Am I looking at the wrong reference point for A1298C?

    May 9, 2012 at 3:42 am #2084

    Lynn_M

    A1298C is referenced as SNP rs1801131. C677T is referenced as SNP rs1801133.

    May 9, 2012 at 4:15 am #2086

    Lynn_M

    From 23andMe: “Which DNA strand does 23andMe report for SNP genotypes?
    The SNP genotypes you are seeing in Browse Raw Data might not match what you learn about the SNP from other sources such as dbSNP. This is because every SNP can be represented using either of the two DNA strands and this representation will often differ from database to database or publication to publication.

    For example, 23andMe might report that a SNP has two versions, G and A. But other sources may report that the versions are C and T. Because of the double-stranded nature of DNA, both ways of reporting the SNP are correct: G pairs with C on the opposite DNA strand, while A pairs with T.

    All of the genotypes displayed in Browse Raw Data are oriented with respect to the positive strand on the reference assembly of the human genome (build 36). Note that this could be different from how the SNP is oriented in dbSNP or how it might be presented in a publication.”

    G=C; A=T. In the example of Greg Mendel (Dad), GG is the same as CC. So Greg Mendel is homozygous for the A1298C mutation. For the homozygous C677T mutation, 23andMe would report it as rs1801133 AA.

    May 9, 2012 at 1:26 pm #2088

    Jack

    Thank you for such a well worded explanation. Made perfect sense.

    So, if 23andme tests not only for C677T and A1298C, but many other SNPs, it would make sense for me to use 23and me as my first genetic test vs SpectraCell that just tests for C677T and A1298C.

    The only reason I can think to use Spectracell would be if there is a concern about the accuracy of 23andme testing process. I have not read anything negative regarding accuracy and the test PBS Nova did comparing shown several services came back with the same results.

    Any thoughts? Would be great if Dr Ben could give his opinion on this matter?

    May 10, 2012 at 4:44 am #2103

    Dr Lynch
    Key Master

    Hi Jack –

    I question the validity of 23andme testing. I find it hard to believe that saliva can produce enough DNA to test for so many SNP’s.

    I know first hand that genetic testing can be inaccurate. I’ve been developing my own genetic test for a certain set of SNP’s and I found variation in results on the same patient while we were researching the accuracy of the primers. Turns out the test was not accurate and we’ve since been validating it more seriously and changing the primers.

    That said, if you know your MTHFR SNP’s already, it would be interesting to see if 23andme will match your current MTHFR result.

    I had one client do a DNA test twice using the test I was researching and her MTHFR results were different. We’ve now fixed this problem so the results are consistent each time.

    Did 23andme do this for all their genes? Doubt it.

    May 10, 2012 at 5:36 am #2106

    melinda

    I know that Amy yasko covers a wide range of Methylation/detox pathways including CBS, with and explaination and supplemental suggestions

    http://www.holisticheal.com/comprehensive-methylation-panel-with-methylation-pathway-analysis.html

    May 10, 2012 at 5:42 am #2107

    Dr Lynch
    Key Master

    Melinda –

    Yasko does offer methylation pathways but not so much detox pathways. CBS is not really a detox pathway. It is but isn’t. The explanations on her test are very limited and people have a hard time proceeding forward properly with it; however, it is the best out there at the moment that I’ve seen.

    May 10, 2012 at 2:14 pm #2113

    Jack

    Thanks for the explanation Dr Ben.

    It is likely I will do both tests and compare the results. If I understand you correctly, any concerns you had about the accuracy of the Spectracell test have been addressed. Therefore, I would trust the Spectracell test if the result differ.

    June 1, 2012 at 8:05 pm #2342

    Jack

    Dr Ben,

    I got my results back from 23andme. It indicates that I am normal for C677T and Heterozygous for A1298C. As I indicated before, I am inclined to run the Spectracell test to confirm the findings. I am not surprised as most of my families issues are related to the one outlines in your post on A1298C.

    I also have access to the raw data. From listening to your presentation on MTHFR mutations, I realize that COMT, MOA A, and CBS mutations are significant for me to determine course of treatment. Do you know the reference sites for each of these three mutations and I will see if they were tested as well?

    I also have concerns about accuracy, but I was impressed that it got everything I knew about correct – physical traits, glaucoma risk, etc. It even knew I have “unibrow” (which my wife had me eliminate shortly after dating!) Perhaps they have developed a good technology. The testing required A LOT of spit. It took 20 minutes to spit that much in the vial.

    I appreciate your help. The site is great especially your presentation on MTHFR mutations!

    June 4, 2012 at 12:35 am #2363

    Lynn_M

    Jack,
    I am working with a friend who did a 23andme analysis. I’ve copied part of a spreadsheet I’ve developed for interpreting her results. The formatting doesn’t look like it did on my spreadsheet, but I think you can still get the idea. The methylation panel SNPs were based on a list of what Yasko tests for.

    SNP Gene Affected Wild Type

    rs419358 alzheimer’s, fat metabolism CC
    APOE E4 is considered the bad one. It has been implicated in alzheimer’s. Those with the genetic allele ApoE4 protein in the blood have been found to detoxify metals poorly and to be much more genetically susceptible to chronic neurological conditions than those with types ApoE2 or E3
    rs1695 GSTM1
    rs7412 alzheimer’s, fat metabolism CC
    rs762551 CYP1A2 Liver Pathway AA
    Slow metabolism of caffeine estrogen, naproxenm, propranolol, acetaminophen, & more drugs
    23andme has a report on this at https://www.23andme.com/you/journal/pre_caffeine_metabolism/overview/
    rs1799853 CYP239 Liver pathway CC
    rs1057910 CYP239 Liver pathway AA
    rs1135840 CYP2D6 CC
    rs16947 CYP2D6 not AA

    N-acetyltransferases are enzymes acting primarily in the liver to detoxify a large number of chemicals, including caffeine and several prescribed drugs. The NAT2 acetylation polymorphism is important because of its primary role in the activation and/or deactivation of many chemicals in the body’s environment, including those produced by cigarettes as well as aromatic amine and hydrazine drugs used medicinally.
    NAT2 is part of Phase 2 Liver Detox
    282 =Rs1041983
    341= Rs1801280
    481= Rs1799929
    590= Rs1799930
    803= Rs1208
    857= Rs1799931

    Rs2187668 T ups risk
    rs6822844 T ups risk
    rs6441961 T ups risk
    rs2074404 GG ups risk

    rs1800795 IL-6 CC
    rs6025 Factor V Leiden CC
    i3002432 GG
    rs1042725 head size
    rs662 PON1 192
    rs7483

    Genes Involved in Methylation Pathways
    rs4680 COMT V158M AG
    rs4633 COMT H62H CC
    rs769224 COMT GG
    rs4618 COMT L136L
    ACE Del16, rs1799754
    rs1801181 CBS A360A CC
    rs234706 CBS Y233Y (C699T) CC
    CBS C699T is a polymorphism in the gene coding for the enzyme cystathionine beta synthase,
    which catalyzes the reaction of homocysteine with serine to form cystathionine, at the junction
    rs6323 MAO-A GG
    rs1801133 MTHFR A222V (C677T) CC
    rs1801131, +C/-A MTHFR E429A (A1298C) TT
    MTR3
    rs2066470 MTHFR P39P GG
    rs1805087 MTR A9196 or A2756 AA
    rs10380 MTRR H595Y CC
    rs162036 MTRR K350A AA
    rs2303080 MTRR S257T
    rs1801394 MTRR A9196G (A66G) AA
    rs1802059 MTRR A664A AG
    rs1799983 NOS D298E (G894T)
    no rs# SOUX S370S
    rs7297662 SUOX A628C
    rs1544410 VDR Bsm/Taq CC
    rs10735810 VDR fok1
    rs3741049 ACAT-02 GG
    rs819147 AHCY-01 TT
    rs819134 AHCY-02 AA
    rs819171 AHCY-19 TT
    rs585800 BHMT-01
    rs567754 BHMT-02 not TT
    rs617219 BHMT-04 AC
    rs651852 BHMT-08 CT
    rs1979277 SHMT

    June 4, 2012 at 2:20 am #2365

    Jack

    Lynn,

    Thank you very much. Check out this link: http://adrenal-fatigue-nightmare.blogspot.com/2012/05/determining-your-yasko-methylation.html

    This person built a spreadsheet to help you map Amy Yasko’s test to 23andme! Saves us lots of work. I will also review what you sent me.

    June 4, 2012 at 8:21 pm #2384

    Lynn_M

    Jack,
    I see that Dana at the website you link to has a number of blogs and helpful links about 23andme results. Good information.

    June 12, 2012 at 4:49 pm #2491

    Eric

    Lynn and Jack,

    I’m very interested to compare 23andMe notes with you.
    I’ve been getting help from 23andMe subscribers and
    find there are many YASKO SNPs not listed.

    It seems that 23andMe does not test the following YASKO SNPs:
    NOS D298E
    BHMT-01
    MTRR S257T
    ACE Del 16
    SUOX S370S

    Any thoughts ?

    Eric

    June 12, 2012 at 9:38 pm #2493

    Lynn_M

    Both Yasko and 23andMe probably select the SNPs they test for based on what they think is of greatest interest to the population taking their tests. Yasko is primarily interested in autism, so her selection of SNPs will be those with the greatest relevance to the autistic population. 23andMe selects based on what they think is of greatest relevance to the general population. So very different target groups.

    Other factors may also be at work. Maybe the importance and/or function of the Yasko SNPs that 23andMe doesn’t test for has not been well established. Maybe some SNPS are harder to test for, and the difference in testing techniques between Yasko and 23andMe and the amount of sample material when using blood vs. saliva is a factor in determining which SNPs are tested for. This is all just speculation on my part. I am not familiar the with particular Yasko SNPs that 23andMe doesn’t test for.

    June 13, 2012 at 4:37 pm #2510

    Eric

    Lynn,

    I see you are looking into other SNPs besides YASKO’s: APO E, CYP1, CYP2, NAT1
    I am very interested to participate in any work you are doing to organize more 23andMe data.

    Are there any resources to determine wildtype, heterozygous, homozygous ?
    23andMe gives raw data and no indication of its significance.

    Eric

    June 13, 2012 at 10:53 pm #2513

    Lynn_M

    Eric,
    I’m helping a friend interpret her 23andme results. When I see a discussion mentioning a certain SNP, I check it out and add it to her spreadsheet. I probably won’t get into a lot more until I get my own test.

    The first one is actually a pdf version of Dr. Yasko’s book, “Autism: Pathways to Recovery”. The third one lists what the wild types are for the SNPs that Yasko tests for.

    http://www.dramyyasko.com/wp-content/files/1327512160_9_1_1_8_pdf_02_file.pdf

    http://www.heartfixer.com/AMRI-Nutrigenomics.htm

    http://www.vsan.org/rok-az/methylation/Genetic_Analysis_Report_summary_sheet_1.pdf

    At http://www.snpedia.com, you can enter the rs number and get information about the SNP. There are several other databases, but I can’t think of them right now. 23andme has a list of third party resources that might be helpful.

    June 14, 2012 at 10:45 pm #2522

    Lynn_M

    Eric,
    This is a good spreadsheet for the methylation SNPs that Yasko tests for:

    https://docs.google.com/spreadsheet/ccc?key=0As5xqg3KuimidDZVRWxKa1gwS0p2a2ZhcnlGSGhPUnc#gid=1

    June 15, 2012 at 1:49 am #2523

    Jack

    Lynn / Eric,

    My first post on this thread on May 8th was trying to decide between Spectracell or 23andme for first round testing. I chose 23andme and am very happy I did.

    I am early in a process of trying to determine the underlying cause for my family\”s health issues. 23andme provided a broad array of data that I have used to narrow in on a number of issues. Although I struggled with believing a $300 test I got for $100 with a web coupon could be accurate, 23andme\’s report on physical traits, disease risk and medication risk has proven to be VERY accurate for all the issues I already knew, like my inherited glaucoma risk that I am taking eyedrops for.

    Using the raw data feature of 23andme has enabled me to gain TREMENDOUS insight into a number of mutations that have a direct correlation to our family health issues that reach far beyond the Yasko spreadsheet.

    The problem is that for the average person, figuring this out on there own is almost impossible. Being an engineer (GO Lehigh a.k.a. Duke-Slayer!)I am able to pour through research studies pulling out SNPs that were proven to be significant for one disease or another. Following the research, pulling out the SNPs from the findings, and using the raw 23andme data, I have reach a point where I am working with my doctors to run the blood work to prove / disprove the theory.

    When I get some free time in July, my goal is to build a spreadsheet that build upon the Yasko spreadsheet in a couple of ways:

    - I want to leveraging the ability to download your raw data from 23andme into a datafile on your PC to automate the lookup of SNPs. (1) Download the data file, (2) enter the file name in a cell on the first tab of the sheet (3) click \”run\” which then runs through each SNP and automatically determines ++, +-, — and color codes the result red,yellow,green.

    - Add related SNPs by category. One tab would be for MTHFR genes, one tab would be detox pathway SNPs, one tab would be for genes related to the functioning HPA-axis. We can keep adding and adding.

    - The first tab would then summarize ++ mutations across all tabs.

    If I do this, then anyone could gain insights automatically in under 1 minute. They could print it and take it to there doctor for discussion.

    Long post, but I really thing this could help lot of people. What do each of you think?

    June 15, 2012 at 3:59 am #2532

    Lynn_M

    Jack,
    I suggest you look here http://forums.phoenixrising.me/index.php?threads/lets-explore-other-snps-apoe-status-liver-pathways-etc-feel-free-to-add.15725/ to see if someone’s already done what you’re talking about. Especially check out Promethetus.

    I think it would be great to have a tool like what you’re talking about.

    June 15, 2012 at 4:41 am #2534

    Thera

    Sounds amazing Jack! I would love to have that

    June 21, 2012 at 1:30 pm #2597

    victoria

    Jack
    I would love to know where you got the 23and me coupon for $100.

    I am thinking of having my little boy do the Yasko test and then wait for a special for 23and me to run again then have him do that as well to cover all the SNPs in question. Anyone else done this? Good results?

    I want to schedule a consult with Dr Ben about him, but I suppose I should wait until I get the SNP testing back?

    June 21, 2012 at 7:09 pm #2599

    Jack

    Victoria,

    The $99 web coupon code I used expired. I am trying to find another that works for my son and nephew because the price jumped to $299! If I find it I will post it.

    Jack

    June 21, 2012 at 8:39 pm #2600

    victoria

    Thanks!

    June 24, 2012 at 7:39 pm #2632

    Astrid Tanis

    I’m new here and glad I find this website. I did a 23andme test and find out I have more mutations than only MTHFR. Most of the data seem to be correct with what I experience. I did read the hearthfixer website and I understand that you first have to fix the problems that come from a CBS mutation otherwise you will develop problems, is this true? I did a little tray out with L-methylfolate and in three days I was sick. I cannot tolerate allot of sulfur containing supplements and that is common for people with a CBS mutation.

    If you are using Firefox they have an app that find snp’s on a website and highlights witch are in your profile. Very handy. The list that Lynn posted is automatically compared to my list and by clicking on it you see if you have a C-G or A-T. Firefox is a free download the snptips also. https://addons.mozilla.org/en-US/firefox/addon/snptips/

    BTW these are my mutations. I’m not really happy with it

    CBS A360A +/-
    CBS C699T +/-
    COMT H62H -/+
    COMT V158M +/-
    MAO A R297R +/+
    MTHFR C677T -/+
    MTHFR A1298C -/+
    MTRR A66G -/+
    MTRR-11 A664A +/+
    VDR BSM/TAG +/-
    BHMT-04 N/A +/+

    June 27, 2012 at 3:47 am #2647

    Jack

    Astrid,

    It is a process – a 6 month process for me so far, but I am confident that I am very close to figuring it out. You have to be patience and not allow yourself to be discouraged as your learn as much from your mistakes, sometimes more. Without forums like this one, heartfixer, Yasko, and folks like Lynn, Dr Ben who take the time to answer key questions, there is no way I would have come as far as I have.

    I have learned that you have to look at each piece of the puzzle, not by themselves, but how they work in combination. Then you have to consider the order in which things get put back in balance. The best source for me has been http://www.heartfixer.com/AMRI-Nutrigenomics.htm as the examples provided as similar to my mutations so it benefited me greatly.

    I also learned the hard way that my CBS up-regulation (10X) and BHMT8 down-regulation create a “CBS Drain” that has to addressed first. When I found MTHFR.NET I was locked onto A1298C. I was so excited to try methylfolate, methyl cobalamin, methyl-anything, P5P that I did so without understanding the rest of the puzzle. I paid for it on day 3 with a surge of cortisol, mood swings, brain fog. All I did was create a waterfall down the CBS drain. It’s not that you cannot take methylfolate, you took it too early.

    I now realize that this process will require a lot of discipline. Getting the CBS drain slowed down may initially require 3 things: (1) reduce sulfur and ammonia in the diet, medications, supplements, (2) stimulate BHMT function with phosphatidyltlcholine and RNA support and (3) take supplements remove ammonia (Yucca, charcoal)

    The diet required is a very strict diet I call “glutten free, low sulfur vegetarian” to reduce the sulfur and ammonia load on the body that is eating up a lot of BH4, causing GABA exitoxicity, stressing the SUOX detox pathway, and causing “brain fog” (sulfites) and “fight or flight” reaction (sulfates). A key part of this will be measuring the urine sulfates and keeping it in range. This is similar to measuring urine ketones while on the Atkins diet.

    After you get your sulfates down to 400 mg/l, you can begin to make the next changes in the process. What these are depends on your mutations.

    Hope this helps.

    June 27, 2012 at 1:34 pm #2653

    Tara

    Jack, would you mind giving some of the staple items you eat on a daily basis? I like the sound of your gluten free, low sulfur vegetarian diet. After a year on Body Ecology and bringing my gut health as far as it is, there are still huge pieces of the puzzle keeping me from fully healing it and getting better. I am learning a little more about sulfur foods, and think they are a piece of that puzzle for me. I’ve checked out the GAPS diet, but I have a really hard time digesting animal protein (I’ve always eaten a mostly vegetarian diet, and I’ve become entirely vegan, gluten free, wheat free, organic — I have horrible reactions even from fresh, local farmers market veggies that I suspect were grown with GMO seed). I feel like if I eliminate the sulphur vegetables, I have nothing left to eat. I am going to try some soaked beans today (haven’t done beans/legumes in over a year), to see if I can tolerate them. I have been reacting to pretty much everything I eat for the past 2 months, and am just miserable. I’m desperate to find food that I can eat. Thanks!

    June 27, 2012 at 10:36 pm #2657

    Jack

    Tara,

    I am at the early stages of putting the diet together. Read my post earlier in this topic on how I jumped the gun to methylfolate too soon resulting in feeding the \\\”CBS drain.

    I have an appointment with a medical practice in Atlanta, where I live, called Pediatrics & Genetics. They are provide genetic and nutrition services for adults based upon nutrigenomics. Best of all, they take BCBS PPO insurance that I have!

    I will be glad to post the diet when I have it ready in 2 weeks.

    June 28, 2012 at 12:53 am #2660

    victoria

    Jack
    Do use home sulfate urine strips to check your sulfate levels?
    Thanks

    June 28, 2012 at 12:54 am #2661

    Tara

    Fantastic about the local practice offering nutrition and genetic services. I’d love to hear how the appointment goes and the diet that results. Thanks for sharing!

    June 28, 2012 at 12:18 pm #2675

    Jack

    Victoria,

    Great question. I ordered them, but have not gotten them. I found them at http://www.ctlscientific.com and the product is QuantoFIX Sulfate part Reference #91329. $30 plus $10 shipping for 100 strips.

    I have had genetic testing, so I know I am CBS/BHMT/A1298C (also MOA A/MTRR/COMT. Keeping my sulfur and ammonia as low as possible to address the BH4 shortage is important for me.

    I have read the material from Heartfixer.com that the urine sulfate strips are a good initial measure. I have ordered them and will share my results next week. I am also lucky to have found a genetics practice in Atlanta that is covered by my BCBS PPO. I will push for them to run the blood work on all the other measures.

    I will also ask them about using an ammonia urine test strip. Bloodwork can be run every 90 days or so, but the test strips would be a great way to check for fluctuations weekly and compare to diet. I plan to start with a strict low-sulfur vegetarian diet for 8-12 weeks and then begin to add things back in – like some meat!. The testing strips would be a great way for me to gauge what gets me into trouble.

    Hope that was helpful.

    June 28, 2012 at 12:49 pm #2677

    victoria

    Jack
    Thanks so much. I did see those Quantofix test strips but thought they were for water testing. I called the company and the person on the phone didn’t know if they would be accurate for urine or not. So it will be interesting to see how they work for you. I also wondered about the ammonia test strips as well.
    Thanks for the info and good luck at the genetics practice, I hope they can offer some help.

    July 4, 2012 at 2:42 am #2754

    Jack

    I had my consultation today with a physician with Pediatrics and Genetics in Atlanta (Alpharetta). It went very well. They accept my insurance. Some of the other specialists she mentioned during our discussion do not accept insurance. This is one of the challenges with this process.

    She felt that 23andme has been proven to be accurate. However, 23andme only covers about 70% of the SNPs she focuses on. Important SNPs for me like SUOX and deletions like ACE are not done and may be necessary later.

    She validated that I was focusing on the correct issues. My CBS up-regulation (10X) and BHMT8 down-regulation create a “CBS Drain” that has to addressed first.

    I as on target on the diet required, but it is even stricter than I thought. The diet required is “dairy free, glutten free, low sulfur vegetarian” to reduce the sulfur and ammonia load on the body that is eating up a lot of BH4, causing GABA exitoxicity, stressing the SUOX detox pathway, and causing “brain fog” (sulfites) and “fight or flight” reaction (sulfates). She recommended the “Raw Food Diet Cookbook”

    A key part of this will be measuring the urine sulfates and keeping it in range. She validated that the sulfate testing strips do work and are a good measuring stick between blood tests.

    I am getting blood work on Thursday and they may not get results for 3 weeks. I will start the program Saturday after I figure out what is left to eat.

    August 15, 2012 at 2:23 am #3156

    Sara

    Does anyone know where the 10-fold activity value for the CBS C699T mutation came from? I see it stated at http://www.heartfixer.com/AMRI-Nutrigenomics.htm#CBS, but there are no sources cited on that document.

    I checked the two main research articles for that mutation, Fredriksen 2007 (http://www.ncbi.nlm.nih.gov/pubmed/17436311) and Aras 2000 (http://www.ncbi.nlm.nih.gov/pubmed/11149614) and the differences were very small: 9.17 uM vs 9.46 uM and 10.62 uM vs 10.92 uM homocysteine (tHcy) levels in the two papers, for homozygous mutation vs homozygous wild type. And the ratio of tHcy to cystathionine changed from 57 to 62, also a small difference, more like 10% than 10-fold.

    I’m trying to get to the bottom of this, since I have that mutation, but it’s unclear to me whether it’s functionally important here. If anyone can find the original source for the 10-fold increase in activity figure, that would be really helpful.

    August 15, 2012 at 12:10 pm #3159

    Teri

    I’m glad this post got pulled back up to the top. I just ordered 23andme tests for my husband and I and should have my results in 2-3 weeks. I see a ton of helpful links on here and I love seeing the diet information!

    September 11, 2012 at 4:38 am #3452

    Lynn_M

    The Spectracell MTHFR testing I had done in March 2012 showed I was homozygous A1298C. Last week I got my 23andMe genome test results. It also said that I was homozygous A1298C.

    The big surprise from 23andMe is that I’m homozygous for CBS A360A. That probably explains why I felt so great initially on methylfolate and methylcobalamin, and then that initial glow and energy boost disappeared after a couple of weeks.

    Now that I know about my CBS mutation, my former paleolithic diet appears to be out the window. Finding a variety of the right foods for me has become rather challenging now. I just ordered the sulfate strips Jack mentioned, so hopefully this will be a good tool to help me identify the boundaries of what foods will be beneficial for me.

    Jack, if you’re still following this thread, I’m wondering how you’re doing with the sulfate strips.

    September 21, 2012 at 3:31 pm #3573

    Dolores Seames

    I would love information on your diet Jack, maybe start a new post? Also thanks for the test strip info. I just ordered them.
    I too am now needing to reconsider my diet concerning sulfur, as I have been eating a lot, being on the GAPS diet. I really don’t want to stop the GAPS diet yet, so am wondering how best to still get a balanced diet, and eliminate sulfur. For now, I will lower my meat consumption, and do my best to eliminate other more potent sulfur foods. The other night, I had tried asafoetida in place of garlic, but them discovered it is just as bad for sulfur content. I also found that Maca is high in sulfur, which I’ve been using regularly. I’m very much into “super foods”, and unusual foods, much of which is not listed as having sulfur or not.

    Well, didn’t get very far with my doctor appointment on discussing more testing, he wants to figure out which test would be best for me. He got a few different test kits. He has been very busy, and we ran out of time at our appointment again. Besides taking TADS for my adrenals, he has now put me on Isocort, because my adrenals just keep getting worse. I have felt better on the TADS, but have been declining more recently. He feels it is more urgent to address my adrenals at this point, so I will feel better. I tend to agree with him. I did email him to tell him that I want to take the 23andme test, and asked for an order from him. My CAM insurance should cover it. So now I wait to hear back from him. I would pay for it out of pocket, but why if I have insurance coverage.
    He wants me to start a food journal, and thinks it’s a good idea to use the sulfur strips, as well as take the sulfur urine test, and also blood test for ammonia. I have been taking charcoal at night, and just bought some Yucca. My doctor also likes Dr. Ben’s MTHFRade drink formula, so will order the items needed for that. At some point, I hope to do much better with the methylation supplements. I have been very good with doing my best to have a clean enviroment, and clean, nutritious, organic food and water for many years. I’m doing the best I know how, and I know God is working behind the scenes for me too, do expect to continue to get better. The hard part is patience, but I’ve gotten through about 6 years of ill health so far, and continue to improve. My prayers and heart goes out to everyone else too. The whole gene mutation info is still new, so we all need to be patient and share our experiences. Thank you to all of you here for sharing and helping. I know Dr. Ben is doing his best for us, and also learning as he goes.

    September 22, 2012 at 4:56 am #3589

    Thera

    Dolores- what is CAM insurance? I didn’t think 23 and me was covered by insurance?

    September 22, 2012 at 1:13 pm #3590

    Dolores Seames

    CAM stands for complimentary alternative medicine. It is a part of our regular insurance that my husban gets through his work. Very few companies have it. I’m very fortunate and thankful. It covers Naturopath dr. visits, supplements and tests that they prescribe, massage therapy, accupuncture, etc. The name of the company providing the CAM insurance is NGS CoreSource. This kind of insurance is not very well known. I wish Medicare had something like this available, since we are gettting close to that stage in our life.

    September 22, 2012 at 3:40 pm #3592

    freshveggies

    I have CBS and am trying to follow this thread too. This is one blog that talks about a low sulfur diet.

    http://anti-itisdiet.blogspot.com/2010/07/what-do-i-eat.html

    I was on paleo, but now am trying to go more vegetarian. Here is a book that gives some guidelines too. The Starch Solution.

    I was low protein from meats and doing better, then I slowly added more in and I got more exocitoticty. Bummer. I just don’t sleep at all. I can’t get a handle on it. Looking forward to your posts.

    September 22, 2012 at 4:30 pm #3593

    freshveggies

    HI Jack. Do you have a link to the “Raw Food Diet Cookbook”
    I looked on amazon and there are so many, but not sure which one.

    October 12, 2012 at 6:31 pm #3764

    Jeff

    Is there any specific protocol for using the sulphate test strips?    First thing in morning etc?

    Also, Dolores, what is your impression of the isocort so far?  I have adrenal issues and similar snps.

    Thanks,

    Jeff

    October 12, 2012 at 9:46 pm #3765

    Kim

    Dr. Ben recommended this link to me to reduce my sulfur levels. http://www.livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/. They are foods low in thiols which are supposed to be the key. I have been following the program for about 4 weeks and have to say I am not seeing much improvement in my main symptoms of fatigue and, headaches and head pressure. I do suspect I am having some severe adrenal issues again though. I have also been using those sulfur strips and have not seen much improvement there either. My numbers are usually >1200. I test about ever 5 days. I read somewhere on Phoenix Rising’s forum that Dr. Yasko says people with CBS can often not handle more than 3 oz. of animal protein a day. Anyone else heard this?

    October 13, 2012 at 1:18 am #3768

    Dolores Seames

    Jeff,

    I would also like more info on the test strips.  I have used them 1st morning, but also later, so not sure if it makes a difference.  I haven’t tried them more than once in a single day.  I did get my sulfate urine results back.  It said I was high, at 32.  The units used was mEq/24 hr.  Reference interval is defined as 0-30, so not too far out of range.  My endocronoligist didn’t know what it meant, so I will have to check with my Natropath next week. When I used the test strip in the urine sample, before taking it in, it read between 400 to 800.

    My ammonia serum was low at 18.  Reference range is 19 – 87.  Don’t know what that means either.  My MMA serum was 125.  Reference range is 73 -376, so I’m good with my methylb12.

    I’m starting to feel better on the Isocort, but not sure I’m taking enough yet.  I don’t want to overdue it, and I don’t want it to cause a problem with my thyroid medication, so I need to go slow, and let my body adjust.  I have the book “Safe uses of Cortisol, which explains a lot in detail, and how to dose.  It mostly talks about Cortef, so need to find out if Isocort is considered the same strength, or not.  I’m dosing as if it were.  Today, I was feeling very good, and the weather was on the cooler side here, so took a longer walk without breaks.  It felt really good, but I was out of breath when I got home, and perspiring a bit.  About an hour later, I started feeling really bad, and had two afternoon apointments, in which I felt rushed.  I really went down hill, even after taking my usuall Isocort dose.  When I got home, I took another dose, even though it was an hour early.  I started feeling better in about a half hour or so.  I still don’t feel great, but much better than I was.  I had just read that if you feel worse after exercise, you should dose extra cortisol before hand.

    Kim,

    I think I’ve finally figured out that a lot of my symptoms are due to fatigued adrenals.  My cortisol levels are flatlined, and apartently, when they get to that state, they are pretty bad.  I also get the pressure in my head with pressure behind the bridge of my nose.  It is very hard to describe to the doctors.    For the longest time, they kept saying that I must have a sinus infection.  I also get a red flushing across the bridge of my nose, and get dry, burning eyes, with sometimes headaches.  I get very tired, but can still function, just feel awful.  I also don’t do well around a lot of people and noise, or conversations.  It’s been 3 hours since my last Isocort dose, and I’m feeling worse again, but it is dinner time, and I don’t want to take it close to bedtime, or get too far away from my regular schedule for now.

    23andme received my test, and they said that it would take 2 to 3 weeks for the results.  My doctor did have me take the methylation function test, so also waiting for results on that now too.

    I need to go and fix dinner and get ready for bed, since not feeling very well now.  I am so thankful for having such a great morning, and yesterday was pretty good all day, although, I didn’t get any exercise.  I knew I probably overdid it, but now I now.

    October 13, 2012 at 1:22 am #3769

    Dolores Seames

    Oh, forgot to mention that I start on the MTHFRade formula, and it might be helping me to feel better too.  It sure causes a lot of gas for me though.  Today was the first day of drinking the whole liter in a single day.  The gas is suppose to subside.  I’d like to know what it is that causes the gas, and why though.

    October 13, 2012 at 5:43 pm #3772

    Jeff

    Dolores, I am also looking for dose equivalency of isocort.  It may well be different.

    In my very early experiments I tend to see improvement for about 4 hrs after the isocort, but my suspicion is that it takes a few weeks to see the full effect.  There are likely many interrelationships with adrenals and thyroid, and adrenals and detoxification.  All the reason to go slow.

    Dr Sidney baker in his detoxification book  talks a lot  about adrenals being required for detox systems to procede normally.

     

    My morning sulfate appeared to be around 1200.  I wonder if amount of water  consumption affects the  sulfate concentration.

    October 15, 2012 at 5:25 am #3781

    Kim

    I am curious, Jack you mentioned above, “However, 23andme only covers about 70% of the SNPs she focuses on. ” Does the Nutrogenomic cover 100% of them then? I am so confused about which test to take. I feel like I keep hearing pro’s and con’s for both. Anyone have any opinions on this?

     

    October 15, 2012 at 8:50 am #3787

    Caledonia

    There are only two decent tests for methylation SNPs – The Yasko test (Nutrigenomics) is the gold standard – 30 SNPs. She spent several years researching and observing to pick out the most important ones. You get a complete interpretation from Dr. Yasko with this test.

    The other is 23andme, which tests most, but not all of Yasko’s SNPs. People do this one to save money. With a coupon, 23andme is half of the cost of the Yasko test, but you have to come up with your own interpretation. It’s getting easier with the Genetic Genie SNP converter and the Heartfixer interpretation (based on Yasko).

     

    October 25, 2012 at 6:46 pm #3961

    Dolores Seames

    OK, I got my 23andme test results, but I’m totally confused.  I can usually catch on and learn through research, but I can not for the life of me, figure out how to tell what is normal, and what is a mutation.  I’ve read everything in this post, and checked out the links that were suggested for more info, and still can’t figure it out.  I’m leaving town tomorrow for a few days, and have to get ready, so may have to wait until I return, to resume this.  Is there a way to convert any of the info into +’s and -’s?  I still don’t understand what the letters mean.  I know I’m homozygous for C677T, and my test shows that I’m AA, so I figured that would be the same as ++?  My test says I’m TT for A1298C.  I haven’t been tested for that, or any other mutations, other than what is on my 23andme test.  So does TT mean –?

    Would this add on listed above be what I need?   https://addons.mozilla.org/en-US/firefox/addon/snptips/

    I have a headache, and need to take a break, and get ready for my trip.  I’d appreciate any help.  The test results contain so many pages.

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