Guest guest Posted July 7, 2005 Report Share Posted July 7, 2005 Hi, everybody - I need some wisdom and good advice! 's gut had been in bad shape for over 6 months in spite of Sulfasalazine, then Colazal. After the Boston DAN, I started thinking more about inflammation and oxidative stress, and how kids may not improve whatever you do under those conditions until both are better. Dealing through this time with increased lipase and pancreatitis symptoms, terrible dysbiosis and gut flares, and associated behavioral issues. ( is 6 years old). So I asked my DAN doc (Dr. Layton in Towson, MD) to run a plasma cysteine, sulfate and reduced glutathione and a urine lipid peroxides through GSDL at our visit on 6/22/05. He was already on a low oxalate diet and Curcumin 250 mg BID by then, with no real positive changes. He used to be on TD-NAC and TD-ALA, but I had stopped both, thinking that they were contributing to the dysbiosis and maybe he was stirring up metals but not excreting them. He had a very brief trial on TD-DMPS back in March, which I stopped when he really flared his gut and got the pancreatitis, so he is not on a thiol chelator. We had previously done 52 rounds of oral DMSA and 2 years of TD-ALA. He is on M-B12, folinic and TD-GSH, and a long list of supplements, diet, etc. Not unexpected, but the results look pretty bad to me - Plasma cysteine 2.76 mg/dL (normal 3.10 - 3.90) Plasma sulfate 4.20 mg/dL (normal 4.80 - 5.30) Reduced glutathione 20 mg/dL (normal > 32) Urine lipid peroxides 24.5 nmol/mg (normal 3.0 - 9.0) All pretty much off the ends of their respective bell curves. We know already that he is homozygous positive for both the superoxide dismutase and glutathione peroxidase polymorphisms. He also has a Fatty Acid Oxidation disorder (Carnitine transporter defect), and we likely have Complex I deficiency as our autosomal dominant mitochondrial disorder (muscle biopsy on his sister will be done in August). So he was a genetic setup for oxidative stress even before thimerosal. Please note that these labs were before we started the TD-LDN, and he is already having a positive response (formed stools! and more). So one can hope that the TD-LDN will help improve the above situation by decreasing inflammation and thereby lowering oxidative stress, but I still feel like we need to do more. Dr. Layton and I have a very collaborative relationship - he is open-minded about my suggestions. The question is - what would be the best approach? I think that we need to normalize this as much as possible, and fix his gut (boy, am I an optimist) before we resume chelation. My thoughts were - 1) Nebulized NAC and GSH - we already neb 3 times a day anyway for his asthma. Has anyone else done this? Did it worsen dysbiosis? Some must get swallowed. 2) Intranasal NAC and GSH - same dysbiosis concerns, and he'd rather breathe it than sniff it - he already does 2 other nose sprays. 3) Lipo-Glut - but he has both IgE and IgG to soy. Soy infractions give him terrible gut pain. Even transdermal, I lose his attention in a learning environment. Might be worth a cautious try, though - I haven't tried it at all. 4) Up the dose of his TD-GSH (currently at 125 mg BID) and restart TD-NAC. 5) Add more antioxidants - he already is on the mito cocktail, but restart his TD-ALA (I can't bring myself to do oral). Maybe grapeseed extract, upping the Curcumin, any other suggestions? 6) Any ideas at all? (BTW - IV is not an option - he has anaphylaxed on foods in the past, and I'm not willing to risk that.) Any opinions on which approach (neb, intranasal, TD) would be least likely to stir up metals and aggravate already existing dysbiosis? And improve oxidative stress? I really do think that he won't get significantly better until we get a handle on this. I don't know whether the TD-LDN will be enough, given the low cysteine and glutathione. I need to do it to help his gut, and because we'd like to resume chelation, which would hopefully help at the source of his inflammatory issues. Thanks. I was feeling like this responsibility was all on my shoulders, but talking about it really helps. Kathy Quote Link to comment Share on other sites More sharing options...
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