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Looking for MTHFR resources other than Ben Lynch

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by PearlGirl26, Jun 17, 2014.

  1. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    I've been trying to wrap my head around MTHFR et al. All research tends to point back to Ben Lynch and his protégés. Does anyone else have other sources of info that backs up his protocol? For example, in an interview I read with him, he said that he has seen over 3000 Pubmed studies linking MTHFR to afflictions ranging from Parkinson's to autism. Yet, when I went to look on the PubMed site, many claimed no link or were anecdotal based on a single patient case study.

    I really want to believe that the answer is in our genes, but I am not willing to go down a road of $1000s more in supplements, plus the horrible side effects described during the "detoxing" process. I also don't want to freak out my family insisting they all get tested. Lastly, I really don't want my heart broken again thinking this might finally be the answer.

    If there are any patient MTHFR protocol success stories, I would love to hear them.

    BTW apologies if this belongs in a different category. I wasn't sure where to post this.

    Thanks!
  2. shah78

    shah78 Senior Member

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    23 and me is 100 bucks. Referrals are 80 bucks. Livewello is twenty bucks. Freddd's advice is free. Lean in!
    whodathunkit likes this.
  3. PeterPositive

    PeterPositive Senior Member

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    I've followed part of Dr Lynch's work including the seminars he has done for doctors which are available for patients too from their website.

    He seems a pretty honest guy, with his own opinions and points of view but he's not promising miracles. Most of his claims are backed up by solid evidence and papers. Of course we have to understand the research in the field of SNPs is very young and you won't find large scale studies with reproductions from multiple labs.

    There's also a lot of anecdotal evidence in this field which is the best you can find. Other than that there's none and some of it is indeed controversial if not contradictory. Btw, this kind of medicine is very specialized to the point of being called "personalized", which emphasizes how a solution for one person will not apply for another as well. The idea of a standardized treatment for everyone might work for the flu or a bone fracture but it's not going to work for chronic multi-factorial diseases. I think it's about time that official medicine realizes this, but it's indeed a paradigm shift!

    My 2c is that you should review the work of Rich VanK, the experience of Freddd and those who have followed his protocol, Dr. Amy Yasko etc...

    I understand, it's difficult not to get emotionally invested and putting lots of hope in a new approach or treatment. Unfortunately it can be very painful if the results don't match the expectations :(

    As many others suggest here, take it one step at a time and be open to possible improvements because it's likely that they will come. Most people here, myself included, have seen benefits from gene testing and following a methylation protocol, but the solution to complex problems like CFS/ME and similar goes through many steps and lots of trial and error.

    We need to learn to live with uncertainty, even if it's not pleasant.

    cheers
    whodathunkit likes this.
  4. ahmo

    ahmo Senior Member

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    @PearlGirl26 If you've been "Living w/ CFS for years, recently diagnosed", and you're as young as you look in your photo, you owe it to yourself and your family to get tested from 23andme or elsewhere. Your family doesn't need to be tested, you do.

    I was debilitated w/ ME for 8.5 years, spiralling downwards, when I discovered GAPS diet Jan. 2012. Quitting gluten and dairy were the first steps. Understanding pyroluria and then getting my genes tested , and supplementing for them were the next steps. And then a March 2013 beginning Freddd's Protocol the 'final' step. Since then I've also moved through a massive detox, which I chose to do in a very gentle and conservative manner. And yes, I've spent money on supps that didn't work for me. Just gave a big bag of them away. But I've had far fewer fails since engaging here at pr, and using self-testing.

    A year ago I forced myself to get off my bed and start playing the simplest of computer games, just to exercise my brain. Today I can respond to numerous posts in a day, my mind works at least as well as it did prior to my illness, and my body is rehabilitating itself.

    I started w/ GAPS diet forums, and then Ben Lynch's site and it's info. I used Dietrich Klinghardt's pyroluria protocol, then watched his vid and re-committed myself to detox. In fundamental ways I'm more healthy now than I've ever been in my life, despite my low level of physical energy. There are now a range of consultants you can engage online, including one working w/ Ben Lynch. And the help offered here is awesome. That's how I've progressed, phoenixrising has been my health consultant. I encourage you to go for it! :thumbsup::balloons:

    ADDED PS: IF ONLY I'd had access to 23andme at your age!!! When I finally saw, first the pyroluria questionnaire, and then, my Methylation Pathway, it was like seeing my entire life laid out in front of me. All the reasons I fell down at every challenge, my body ill-equipped to deal with stress. This, in itself, seeing the "Why" of my life, was priceless.

    http://www.hputest.nl/evraag.htm Online questionnaire to suspect pyroluria
    Last edited: Jun 17, 2014
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  5. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    Thank you all for your advice. I'm still on the fence regarding the supplement protocol. I don't see any mainstream entities backing the science, which gives me pause. I already have implemented everything else (perfect organic diet, removal of any chemicals in the house, air purifiers, etc.) It seems like a risk to upset any progress I have made up until this point.

    @ahmo - I only wish I looked that young;) The pic is of actress Melissa Gilbert as Laura Ingalls Wilder (aka "half-pint") from Little House on the Prairie.
  6. ahmo

    ahmo Senior Member

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    Northcoast NSW, Australia
  7. shah78

    shah78 Senior Member

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    There will NEVER be mainstream entities backing the science until the "entities" can figure out how to charge more money than Yasko/Ben Lynch can ever dream of. Check the price of Deplin vs generic health food store folate! Really, just search this site for Freddd/RichvanK dialogues.
    ahmo likes this.
  8. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    I think "mainstream" is poor word choice on my part. What I'm really looking for is an independent source, a doctor or research group NOT tied to a supplement company and/or conference training group; in other words, someone who doesn't stand to profit.

    I tried reding Fredd's thread and frankly,
    It went right over my head, too much scientific jargon.
  9. shah78

    shah78 Senior Member

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    Try howirecovered.com. He does the best Freddd in a nutshell.

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