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!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

Springing for the Methylation Panel: have you found this worth the bucks?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Jimk, Feb 5, 2012.

  1. Jimk

    Jimk

    Messages:
    90
    Likes:
    5
    Cleveland, Ohio
    NOTE: PLEASE DON'T POST ADVICE ON IMPROVING MY CURRENT METHYLATION PROTOCOL HERE-- JUST ON THE GENE TEST QUESTION

    I thought I'd get the collective take on whether any of you have found the genomic testing for methylation defects worthwhile.

    Context: I know I have at leas one methylation defect MTHFR C677T- this test was covered by insurance because the defect affects both heart disease and pregnancy. It's "accepted" for clinical use. My CFS doc put me on Metafolin and suggested I gradually ramp up this and methylcobalamin. I've been taking the Metafolin for about 5 months with no noticeable difference, currently 800mcg twice a day. I was not as consistent about the B-12 until recently as I've been reading more on this forum from Rich and Fredd and others. Having increased my methylcobalamin 5mg x 4 a day I have a noticeable increase in energy, but my brain fog remains untouched. My guess is that I have defects in other parts of the cycle and that the Metafolin and methylcobalamin is only filling one slot of a more problematic cycle.

    I've 30 years of "experimenting" with CFS protocols! I really hate the hit or miss nature of putting time and energy and money into another new protocol without some kind of definite information. I thought the gene testing was outlandishly expensive last time I had looked, but Yasko's site has a Comprehensive Methylation Panel with Methylation Pathway Analysis for $495. This is less than I remember, but still a chunk of change if the the chance of impacting symptoms is still vague. In other words, just cheap enough to be tempting, but I've spent lots of money on CFS treatment and I'm jaded.

    So, Question: Those of you who have gotten the testing, has it paid off?

    I suspect that there is a wealth of advice folks might have on how I could do what I'm already doing about methylation much better. Could you please NOT POST THAT HERE. I'll start another thread with "Why is this not working so well?" For your advice. I'd like to keep this thread clear on the Panel question.
     
  2. dannybex

    dannybex Senior Member

    Messages:
    2,249
    Likes:
    562
    Seattle
    I would say no, it's not really worth it.

    It takes about 2 months to get the results back, then along with those you're given a huge list of supplements to take, some which conflict with others on the list, plus includes of course the controversial RNA supplements that have no studies or any proof at all to back them up. Some swear by them however...

    But what really bothers me is some of Yasko's recommendations regarding the so-called "CBS Upgregulation" polymorphism and how one must avoid sulfate, which she calls "toxic", while others say it's vitally important. I posted Susan Owen's comments here:

    http://forums.phoenixrising.me/show...r-wait-for-neurology-appt&p=237233#post237233

    Plus, there's Rich's study, that showed that even if one DID have the CBS issue, that it resolved itself in 2/3rds of the patients, without having to follow her strict dietary and supplementary suggestions:

    "The data in Figure 4 support Yaskos claim that the CBS C699T polymorphism significantly drains metabolites from the methylation cycle when there is a partial block of methionine synthase. However, during the treatment, though there continued to be differences in the values of SAM +SAH between those who had the polymorphism and those who did not, even those who were homozygous for this polymorphism attained levels of SAM + SAH averaging near the reference value after 6 months of treatment, without compensatory treatment for the presence of this polymorphism."

    Also, if you're taking relatively high levels of b12 and methylfolate and don't feel like you're hypersensitive or are getting strong reactions to them, then my guess is that you probably don't have the CBS issue, which is supposedly the big bad bugaboo that causes most of the reactions.

    I'm sure others will disagree, but I say save your money. :)

    Just my two cents.

    Dan

    p.s. Yes, the price has come down by half. Also, you get four RNA supps for free (at least that was the offer I had), so, either this is due to the economy, or...perhaps business is slowing down as folks are realizing there isn't much science behind some -- some -- of her theories.
     
  3. Freddd

    Freddd Senior Member

    Messages:
    4,546
    Likes:
    917
    Salt Lake City
    Hi Jimk,

    I grew up in the Cleveland area. I can't answer in regards to the methylation panel except that I haven't considered it worthwhile paying for it but then I am short on funds from decades of illness. First from what others have reported I'm sure it will be interpreted to say that I am doing things that "shouldn't" work. I've been at this going on 9 years now. I haven't found, in general, any significant recovery in people being guided by a whole lot of tests and treated to "test targets". This isn't concerning the methylation panel specifically. My objection is that much of the interpretation of the tests is compared to a population that is chronically deficient of active b12 and methylfolate, where the abnormal blood characteristics have become "normal" or at least average and accepted and who knows what other results have become biased as a result. I truely do not trust the interpretation of results of all sorts of tests. They give results that cause people to do very detrimental things. They are incapable of recognizing induced folate deficiencies of various kinds including paradoxical folate deficiency that they call "detox" and even suggest things that cause such and call a triggered low potassium "detox" which is outright dangerous. This suggests to me that the theoretical underpinnings are not leading to correct conclusions. I'm a systems analyst, not a doctor. The logical structure and it's assumptions are faulty in the case of so many tests. I could go on about a multitude of papers with unproven assumptions being at their base, interpretations that don't hold up if the right questions are asked, and conclusions based on poor questions to begin with. GIGO.

    Be in good health and good luck.
     
  4. Jimk

    Jimk

    Messages:
    90
    Likes:
    5
    Cleveland, Ohio
    Thanks for your take on this

    Thanks Danny, Fredd
    I do understand the limitations of tests-- they are not as definitive as they seem. On the other hand, I've had tests pick up things I would never have pursued, like chronic occult infections. But that's why I thought it wise to draw on some of the collective experience on the forum here.

    I didn't associate the cost reduction on the methylation panel as due to slow business. My guess was the opposite: these kind of lab procedures yield to economy of scale, and increased demand can allow for the purchase of equipment that brings the unit cost down. Her work has certainly grown in popularity in the autism community.

    At any rate, I appreciate the empirical approach folks have taken here, and the use of theory as a guide but not a replacement for the actual results. I'd still like to hear others experience with using the panel test results.
     
  5. dannybex

    dannybex Senior Member

    Messages:
    2,249
    Likes:
    562
    Seattle
    Good points Jim. I should clarify that I think it's probably worthwhile to get some genetic testing done as there are definitely studies out there that show connections to certain polymorphisms, etc., but perhaps use that other service, the 23andme (?) site? I think -- think -- that it's about half the price of Yasko's.
     

See more popular forum discussions.

Share This Page