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!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

Seeking input in my 23andme results

Discussion in 'Genetic Testing and SNPs' started by trollo, Jun 5, 2013.

  1. greenshots

    greenshots Senior Member

    Messages:
    399
    Likes:
    138
    California
    I think its the group of defects you have with the acat, shmt, and full mthfr a1298c
    These are big guns and if you can get a doc on board, it would help. I know thats hard since there are only a handful of people who do this stuff. Your comt +\- is probably ok with some methyl groups but I would be careful with that acat since its a big gut enzyme and is also connected to mito problems. Since Yasko always starts with the SHMT you should start there.Her spray has folinic and nucleotides along with some other stuff so would be a good start. But overall, I'm not sure how you would do if you don't get the gut part stable. I would really research what you can to see whats right for you. Caledonia has a great signature for basic methylation info and I finally added some below that people ask me about alott.
    Beyond likes this.
  2. trollo

    trollo Senior Member

    Messages:
    130
    Likes:
    10
    Italy
    I going to try to read Yasko's book, i can t spend thousands of euros for a practitioner....
  3. greenshots

    greenshots Senior Member

    Messages:
    399
    Likes:
    138
    California
    I spent thousands and thousands trying to do it on my own so be careful.
  4. Bluebell

    Bluebell Senior Member

    Messages:
    392
    Likes:
    210
    Hi Trollo,

    It must be hard to decipher this stuff when English is one's second language -- it's difficult enough for me to try to understand these medical concepts and terminology, and I am a native English speaker.

    It must also be frustrating to be living in a place where many of the recommended nutritional supplements are not available to purchase, or have different names.

    I share your concerns that it is not easy to find a trustworthy medical practitioner who is well-informed about these topics and who is accepting new patients, nor to get proper medical care that is affordable when one does not have many resources to spend on it.

    On the positive side, it sounds like you are now aware of many pieces of your puzzle (health-wise), and things will hopefully get much better from this point forward.

    Good luck to you!

    =====
    Below are some informational links that I have collected, many of which are in written form.

    [But don't be discouraged when you see that something is in a video format -- most of these videos are verbal explanations of the Powerpoint presentations which are prominently featured in the videos, and you can get a lot of information just from reading the words and the charts which appear on the presentation slides, even if the spoken part (American accents, etc.) of the video is hard for you to follow.]

    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 don't know: I, too, 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
    Beyond likes this.
  5. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

    Messages:
    923
    Likes:
    514
    Murcia, Spain
    Bluebell, lots of information! I will look into the links myself.
    Yeah it happened the same to me with a music video I wanted to put in my signature. :rofl:
  6. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,270
    Likes:
    8,952
    Amersfoort, Netherlands
    Bluebell
    I think I managed to get the link once instead of the video by clicking the "link" icon and putting in the same URL. This seemed to stop it from automatically embedding the video.
  7. Bluebell

    Bluebell Senior Member

    Messages:
    392
    Likes:
    210
    I spent 20 minutes faffing about with the original link, but it refused to behave.

    I managed to get around it by using a more general link to his site.
    Valentijn likes this.
  8. trollo

    trollo Senior Member

    Messages:
    130
    Likes:
    10
    Italy

    I NEED TO LINK YOUR SUGGESTIONS TO THE GENES THEY SHOULD BE SUPPOSED TO TREAT, OTHERWISE I M LOST IN CONFUSION.[/quote]



    I'm sorry that PathogenKiller never responded to this questions cause they are very important to me... Anyway, i hope that somebody who really know about it responde at least to these: Why a few genes like Suox or Nos are not present in the genetic genie results? They look as 'Not found' , does this mean that 23andMe never searched them or that geneticGenie wasn't able to find them into my raw datas??? In the case 23andMe doesn t test these genes what it is recommended to do with genes like Nos or Suox???
    I'm reading Yasko s book and it seems that BHMT should mimics CBS symptoms; does this mean BHMT also lead to high ammonia, sulfite and sulfate? If so, as Yasko suggests to adress CBS after SHMT and ACAT can i adress as well BHMT like if it was a CBS (at least in regard to ammonia and sulfite issues)?
  9. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

    Messages:
    923
    Likes:
    514
    Murcia, Spain
    NOS, SUOX and a few others such as BHMT 1 are not in the raw data of 23andme. You cannot do anything regarding them unless you get them tested somehow.
    Not really. My understanding about BHMT its that you need ammonia support with them, but it doesnt cause as much sulphur problems, it kind of adds to CBS which its the big one. If you are still concerned with sulfites and sulfates you could always test it with strips: http://forums.phoenixrising.me/index.php?threads/urine-sulfate-strips-yasko-vs-ctl-scientific.21434/
  10. trollo

    trollo Senior Member

    Messages:
    130
    Likes:
    10
    Italy

    Yes, thanks! I was going to ask about the strip tests; so i can find confirmation trough these sulfites and sulfates strips if i have or not ammonia problems... right??
  11. trollo

    trollo Senior Member

    Messages:
    130
    Likes:
    10
    Italy
    I'm trying to look for phenylalanine and ammonia test in my city... phenylalanine seems to be rare and expensive. About ammonia (NH3) i wasn't able to find a lab who do it... they do instead 'ammonio' (NH4) and i d like to know if NH4 can be done as well to monitor ammonia levels in blood. Basically i d like to find a confirmation that i have issues with ammonia and bh4 levels as it should be with my SNPs before buying any supplement...
    The sulfites/sulfates strips are expensive indeed and i don t know if they are as predictive as ammonia in blood..
  12. Bluebell

    Bluebell Senior Member

    Messages:
    392
    Likes:
    210
    Trollo, I know very little about this area, but I did read last week on the internet that the sulfite/sulfate strips that test the urine are not a good indicator of what is going on in other areas of the body.

    So this might be an area of testing that people are in disagreement about.

    -----
    One thing that Rich van Konynenburg wrote about adults with Chronic Fatigue/M.E. who have methylation problems (as opposed to children with autism who have methylation problems) is that extensive testing and consultation with doctors is nice, if the adult can afford it, but just starting on his simplified methylation program, with small doses and by going very slowly, often is enough to make health improvements.

    Then, if the person hase negative reactions to the simplified methylation program, more extensive research can be done into the person's biochemistry. They say that working with a healthcare provider is essential, in order for proper monitoring to take place in case there are negative reactions. (Although I won't be able to do that, I agree it's good if the patient can do that.)

    Rich van Konynenburg apparently collaborated with Amy Yasko on some of his work into the simplified methylation program, so she seems to have agreed (somewhat, at least?) with his views on that.

    I'm afraid I don't off the top of my head remember where he said that, but you can find where he stated those views by looking at his (and Neil Nathan's) materials in my list of references for methylation (look at the last post in this thread for the most updated list): http://forums.phoenixrising.me/inde...-about-methylation-and-b12.23974/#post-369019

    I would love to get tested for many more things now related to methylation, but I really can't afford to, so I'm going to have to research what I can, plan out a simple program, and start small.

    (My recent blood tests highlighted some surprising and important health issues for which I will need to see a doctor soon, but I doubt I would be able to find a decent mainstream doctor in my area who ALSO works with methylation, so I won't even try, and will just "make do" with whatever doctor I can get.)
    Adlyfrost and Valentijn like this.
  13. trollo

    trollo Senior Member

    Messages:
    130
    Likes:
    10
    Italy
    Well i think in the Pathway to autism book it is suggested to use strips tests to monitor sulfates and sulfites, i don t understand if you disagree with the strips test or with the value of sulfates in urine in general. And what about ammonium in blood???

    Considering i already did a CDSA test and 23andMe it seems absurd to me doing a general symplified methylation protocol, cause i already should know what supps i shouldn t be tolerant to. It seems to me that following a individualised protocol would be more safe and effective. The point is that i need confirmation to hypothesis, before beginning a treatment by myself.
  14. Bluebell

    Bluebell Senior Member

    Messages:
    392
    Likes:
    210
    Trollo, I'm not disagreeing with anything. You raised a question about the effectiveness (or the expense, or the necessity, or something) of the test strips. In response, I was just mentioning what I had read about the strips. I clearly stated at that time that I don't know much about these issues. :)

    I was not trying to suggest a "rival" protocol as any sort of insult to Yasko or to your prior research work that you've done on your health condition.

    As I explained above, I have the impression from what Rich wrote that Yasko worked with Rich, in part, on his protocol, so in some manner she does seem to have agreed with it.

    I don't think my suggestion to you was "absurd", but everyone needs to reach his/her own opinion on these matters.

    If the Yasko book feels right to you, and you want to implement the Yasko system, then do so, and see how it goes!

    No strangers on an internet discussion forum can confirm a medical hypothesis or medical treatment for another person. All that the people on this forum can do is offer their opinions, their experiences, and what they have read about the issue. It will be solely up to you (and your doctor, if you wish to get a doctor involved) as to what medical treatment you undertake for yourself.
    greenshots and Valentijn like this.
  15. trollo

    trollo Senior Member

    Messages:
    130
    Likes:
    10
    Italy

    I simply asked you what you meant in detail (if you called into question the reliabily of the urine sulfite tests in general or just the strip tests method), you didn t respond but you instead opened a controversy...
    When i say 'confirmation' to hypotesis i mean the biochemichal tests who could confirm if that SNP is really creating that issue. I don t follow anything by 'feelings'.
    Anyway the question are directed to every person here not just you. There is somebody here who know about the ammonium blood test??
  16. trollo

    trollo Senior Member

    Messages:
    130
    Likes:
    10
    Italy
    I m thinking about the neurological health formula to be taken with the Acat-bhmt supp and the folinic acid for shmt as a step one before adressing bhmt (with b12 forms and ammonia detox and etc..) and so on.... but i see that it contains garlic... isn't garlic high in sulfur??? What do you think, is Neurological health formula indicated with my SNPs??
  17. greenshots

    greenshots Senior Member

    Messages:
    399
    Likes:
    138
    California
    I don't think the garlic will be much problem but you'll need a hefty tolerance to take all those Yasko supps. The neurological and ACAT/BHMT together would be horrible for most people. But it depends on your tolerance and whether you can really knock yourself down that much for a while. I started off doing that but had to knock it back some and take teeny sprinkles of her stuff to get over the shock to my system.
  18. trollo

    trollo Senior Member

    Messages:
    130
    Likes:
    10
    Italy

    I was thinking about Neurological health formula just because Yasko suggest to assume a minerals support before or during the treatment and this product contain a lot of diff minerals. But i think is economically very not wothwhile because the doses for each pill are VERY VERY LOW. Also the super expensive Acat-bhmt supp appear to be a scam, it has very low doses of each supp contained and the majority of them haven t either a declared dose. I contacted them and they told they don t know the doses of every supp in the Acat formula... so the price comparison tab is a scam because all those supps are very high in dosage if compared with the Acat. I even believe in USA it's illegal selling a product without declaring in the supplement facts the exact dose of every supplement... So i'm not more thinking toward that formula as a suitable option...
    Valentijn likes this.
  19. trollo

    trollo Senior Member

    Messages:
    130
    Likes:
    10
    Italy
    Valentijn likes this.
  20. greenshots

    greenshots Senior Member

    Messages:
    399
    Likes:
    138
    California
    Its not a scam or illegal to have some supplements in a product in small, propietary doses without exact ingredients on the label. The majority are listed. I just don't think its the way to go because there are so many in the ACAT that it causes alotta detox and is hard to tolerate. I used to go by the whole idea that if some is good then more must be better but I've learned that with this medicine, thats just not true. Low doses are more than enough cuz a bunch together have what we call synergy in medicine. Its when one drug makes another work better. Its the reason drug companies put pain killers with tylenol. The neuro health multi's are a good choice when you can tolerate a bunch of stuff. Yasko doesn't use high doses so thats why there aren't huge individual doses in each bottle, you don't need them.

    I think you should rethink whether or not you should do this medicine based on our pms and your posts. Or maybe just stick with Fredd or Rich's ideas and veer away from Yasko. If you go into something believing its all a lie then it isn't the right fit for you. Its probably not going to work well for you. Our personal belief system has alott to do with how we heal. If it were me, I would look for something that feels more compatible to my way of thinking. That way, it won't be so hard to follow the treatments. You'll feel less negativity and stress about following it.

    I see this forum as more about debate over best approaches from those who have already studied some of the basics and tried them or between people who feel this fits them. Most of us can't argue Yasko's points and shouldn't try to convince someone that she's right or wrong. Since only a few scientists have put energy into methylation and Yasko is a major pioneer, its what we have. I think it gets concerning when people who haven't really studied it argue against her theories or people who believe completely try to sell it to others who don't beleive. I wouldn't expect to find an atheist on a christian forum and then have members trying to convince the atheist to follow their lead. Most people start at the basic concept of accepting something and then trying to learn more from others. I'm afraid you won't get the most unbiased information from either side and thats where you can get misled. I would take some time to read the posts from Fredd and Rich and get that under your belt so you'll know whether this is right for you before listening to any of us. There a also scores of links under Bluebell's posts so that you can learn from others without jumping into Yasko's endless talks about biochem.


See more popular forum discussions.

Share This Page