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!
9th Invest in ME International ME Conference, 2014 - Part 2: Pathogens and the Gut
Mark Berry continues his series of articles on the 9th Invest in ME International ME Conference in London, with the emphasis shifting from autoimmunity to pathogens and the gut ...
Discuss the article on the Forums.

Looking for further Direction

Discussion in 'General Treatment' started by LanneP, Feb 21, 2014.

  1. LanneP

    LanneP

    Messages:
    12
    Likes:
    5
    Hello,
    I am posting this on several sites in attempt to get help for my 20 yo daughter who has had failing health for several years now. (Also posted in Genetic Testing &SNPs, but looking to see if anyone else can add to the great feedback I got there.)

    She's been diagnosed with CFS, Raynaud's, APS, and a +ANA. She is also being treated for hypothyroid and hypo adrenal issues (it would appear something is not working right w/ pituitary as well though MRI is unremarkable). She's anemic with low ferritin (though has had periods of high iron saturation). Her Vit D, Vit B12, and zinc are also low. She was supplementing with zinc carnosine (I think) for presumed GI issue (based on +RAST test, anemia, and low Vit D & Vit B-12), but has never had ANY GI symptoms. She was put on GF/DF diet, much to her dismay, and has felt absolutely no difference (other than feeling foggy headed after cheating on dairy). I have observed her blood tests get worse when she has not been GF/DF). So, there may be some "leakiness" going on, but I would expect she'd "feel" something associated with that.

    She's seen several doctors who only get so far and then don't know what more to do for her. So, we had testing done through 23andMe to see if there was a genetic component to all of this. I'm wondering if there is anything here that may be contributing to her situation, and if so, what would we do to help it? If not, where to turn next?

    Also of note, any time she takes Vit B's (not sure which one causes it) she gets foggy/ sleepy (She's taken Dr. Teitelbaum's Revitalizing Energy (cyano., I believe); a general methylation protocol using NAC 600 mg BID, SAMe 200 mg BID, and B Supreme by (Designs for Health) 1 tab/ D - contains Naturefolate 200 mcg and methylfolate 250 mcg) and methyl B-12. Any and all help would be appreciated.

    These are the results from running data through genetic genie with a few other mutations noted. The rest were -/-.

    +/+
    METHYLATION - VDR TaqCBS A360A
    DETOX - CYP1B1 L432V, CYP1B1 R48G, SOD2 A16V, NAT2 K268R
    OTHER - MTHFD1, MTFS

    +/-
    METHYLATION - COMT V158M, COMT H62H, MTHFR A1298C, MTRR A664A, BHMT-02, BHMT-08
    DETOX - CYP1A2 164A>C, CYP2E1*1B 9896C>G, NAT2 I114T,
    OTHERS that may or may not be important - CETP, FII, F7, F9, FOLR2, DAO, FUT2, GAD1, FD1L, NOS2, NOS3, PEMT, SHMT2, TYMS, CTLA4, FOXE1, NDUFS7, NDUFS8, APOE, TNF, SULT1A1, & SULT2A1

    Any other suggestions, opinions, or input is welcome.
    With anticipation,
    LanneP
  2. rubydragon

    rubydragon

    Messages:
    14
    Likes:
    4
    I don't have any advice, but empathize as a mom of a teen with similar issues who is muddling through.

See more popular forum discussions.

Share This Page