Equivalence/Mixing of TD and oral chelation agents- Q for ACutler

[Guest guest]

I'm researching your protocol and wondered if you could do transdermal

of either DMPS or DMSA on your schedule (never doing oral) or could do

oral (if it's significantly more effective or safe) during the day and

transdermal when the child is sleeping or refuses to take the oral.

Are dosing and times the same or need to be adjusted due to absorption

route?

Also, our child lacks the liver/kidney glutathione gene (according to

one test anyway), so we do glut/nac (she's low in nac too) with

chelation - does timing here also matter? Can I apply it at the same

time as chelators so it's levels can be up before ALA brings stuff out

of the brain (to scavange if mercury gets dropped)?

Maybe you (Andy) or other listmates with similar situations could also

comment on our situation more specifically. In a nutshell poop

withholding is basically barring our access to chelation, and we

wondered if there's some way around it or if the risk is too high to

do it yet.

My daughter is 5.5 yrs and 44lbs, pddnos, and has had no wows yet -

basically a nonresponder to every major therapy/biomed approach so

far. Our child was very physically and cognitively impaired before 12

months (never crawled, couldn't sit by herself until about 1 yr, etc.

but has been very coordinated physically since still cognitively

impaired. It's as if her body cleared poisons out of her voluntary

nervous system but her brain and gut (autonomic systems) are still

contaminated, resulting in poop withholding as long as 6 days between

poops, but when it finally comes out it's pretty soft. Nothing has

worked to change her pooping habits significantly in the 2.5 yrs since

diagnosis. Our DANs mostly won't prescribe chelators if she doesn't

poop regularly but don't know how to get us there.

Catch-22: We may never fix her gut or brain if we don't chelate, but

can't chelate until her gut or brain function well enough that she can

think better so she can poop better, which may never happen without

chelation.

Desperate, we fed her a big fistful of cilantro every day for 2 yrs

(supposed to chelate) and got one DAN to prescribe TDDMPS 30mg/ml (1ml

/day alternating days with glutathione/nac TD every day) which we

agreed we'd only use during those periods when our daughter

inexplicably started pooping regularly (once/day or alternating days),

but suspend chelation if she missed 2 days - it took us 8 months to go

through 3 month's prescription. We completed about 45 chelation days

from that prescription, with no visible improvements and our single TD

challenge test was zero for mercury (was high-normal range for nickel

arsenic and a few other items). I added oral ALA 50mg with last three

TDDMPS applications and noticed better than average days - especially

good therapy appointments, more mental presence.

Then I read about kids having setbacks (losing some limited language

they have for example) even after lots of successful rounds (I don't

know if this would apply to us as TD and at 30 mg DMPS - are major

setbacks only for heavy duty IV's or high dose challenges?). So based

on tantalizing positive results for now, I'd like to pursue the oral

ALA + DMPS/SA transdermal using something like your protocol, but

minimize risk of major redistribution. I wondered if I could adapt

your protocol to allow substitution of transdermal and oral agents

without changing the schedule (whether DMPS, DMSA, ALA, or even

glutathione TD vs. oral liposomal).

On chelating a poop-withholding child, if we keep the dose low enough

(30mg or less each chelator and ALA) and continue glut/nac, are we

" safe " ? Heyl (DMPS mfg) literature says that 90% of the DMPS is

recovered from urine in 24 hours, so it seems it's going out the

urine, but whether it's still carrying the Hg or dropped it along the

way is not reported. Perhaps it hands off the mercury to glutathione

which then takes it to the gut. Our current DAN thinks mercury goes

out gut mostly and so our risk of reabsorption and redistribution is

too risky to prescribe unless pooping about a day's amount of poop

every day. Another local DAN thinks it's worth continuing chelation

in a constipated child hoping that at least some mercury will be

excreted each time even if some is redistributed; as long as low doses

(not IVs) are used the effects of redistribution would be vanishingly

small.

Do we (1)keep chelating but risk redistribution, (2)hold off on

chelation until her gut flows freely which may never happen (and she

may never improve her dianosis - she's a nonresponder up til now), or

(3) can you see a protocol that can get around the poop withholding

issue, so we can chelate in some way that will minimize redistribution?