Hi Lisa,
I haven't been on this forum before but am trying to connect with those more like us. Have seen your comments on other sites in my google searches and we seem to have some overlap with you (methylation/biotoxin). We are a family of 4 (NoCal, SoCal) w/ decades of gut problems (dysbiosis), allergy, immune issues, heavy metals, all neurotypical, not quite CFS but in that realm and SICK. Discovered a 14 year toxic exposure to 4 kinds of mold in the house (including Stachy). Thought we'd addressed that with an environmental guy (anti-fungals) and house rehab and Patricia Kane's high dose phosphatidylcholine and fatty acids. Later found Yasko and did her protocol for methylation weaknesses w/ great success, initially, for my son, leading to purple bartonella striae all over his back and diagnosis of tick-borne infections. Lyme treatment, however, left him disabled, 3 years now.
No amount of Yasko interventions produce much of anything now, unlike before, as he has the classic Shoemaker trifecta of hypothalamus damage (low sex hormones, dysregulated cortisol and dysautonomia, and low anti-diuretic hormone.) So Shoemaker now seems to be our only choice. Initially avoided his approach due to cholestyramine seeming to be his main treatment (and we've all had low cholesterol) and his being allopathic . Now Shoemaker seems to have tools to use beyond cholestyramine that my son, at the very least, may need.
We are waiting for an appt with Shoemaker, doing Yasko, and our usual amount of alternative things. Have a few questions, please: (1) Have you seen him and what did you think--he gets mixed press. (2) We got the HLA-DR genetic testing and son has one haplotype (3 genes from one parent) that is mold susceptible. Other haplotype from other parent is not susceptible. New doc, however, took 2 alleles from one parent and 1 from other parent and said that made a haplotype that is multlisusceptible ( in addition to the mold susceptible one). Kind of a mix and match approach to the alleles vs 2 distinct haplotypes coming in. Do you know how they are scored? Finally, (3) Have you removed heavy metals? We've not chelated since he was 9 (DMSA) and he's 22. Have been trying to do it Yasko's way (no DMSA/DMPS because of the CBS+- A360A) but the metal excretinon only worked before the antibiotic treatment. (3) Have you done mold allergy desensitization sublingual drops to calm down the reaction to mold? We have not. Yet I think about his treatment for lyme and all of the antibiotics and also a high dose treatment with a mushroom immune stimulator that I believe just added mroe mycotoxins (or mold sensitivity) to him. Wonder if that's what we should do, too.
We did so well with all of our alternative stuff and methylation treatment, despite 14 years of mold exposure, but have been kicked way, way down with this last 3 years post mushroom/antibiotic treatment. Was happy to find someone who'd traveled similar paths as we have. Am finally moving away from my exclusive focus on Yasko's chatroom--I was blown away by that information that very much addressed our issues, despite no one in the family being on the spectrum. However, I'm just realizing there are groups of people maybe more like us, though we're not exactly CFS or FM.--we're definitely biotoxin illness people. Will now read everything I can on this part of the Phoenix Rising site to bring myself up to speed. I don't understand which to press: "post quick reply" or "go advanced" or "+reply to thread", but will just hit the first.
Thank you so much
Avis
