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Abnormal oxidative stress panel - what to do? (long)

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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

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