Fw: wasTami/was: Re: Equivalence/Mixing of TD

[Guest guest]

Thanks ,

I appreciate you reposting it. I am very glad to hear he said it

will cause other issues at least.

" I agree, noone is right about everything, but Andy is wrong about so

few things, they're inconsequential. "

I'm glad to hear that. However different in my situation as some of

my son's big wows were from the very things Andy advises against. My

loyalties lie with my child as well and following the roads that have

healed him the most.

Thanks again, you are always so helpful.

TamiW

Gavin's mom

> >

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

transdermal

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

>

> Yes, though not recommended.

>

> > 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.

>

> No. It has to be all one or all the other.

>

> 99% of the time you can use oral adminstration. The need for TD is

wildly exaggeragted

> mostly by bad doctors who don't know how to give proper

instructions - it is not hard to

> get these into kids and they really don't have to wake up or fight

you at night.

>

> > Are dosing and times the same

>

> Yes.

>

> >or need to be adjusted due to absorption route?

>

> No.

>

> > Also, our child lacks the liver/kidney glutathione gene

(according to

> > one test anyway),

>

> Even if true, this is very common and does not account for his

particular situation.

>

> > so we do glut/nac (she's low in nac too) with

> > chelation - does timing here also matter?

>

> No. And this is harmful for some kids, very helpful for others,

which is which is unrelated

> to this alleged genetic issue. Pay attention to him and see if he

is better during a week on

> it or a week off it.

>

> > 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)?

>

> This is irrelevant. You can do it this way if you want, it won't

help but it also won't hurt.

>

> > 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,

>

> No, it is only upsetting your doctor because he doens't know enough

about chelation.

> Chelate away. This will not cause chelation problems. It will cause

OTHER problems and it

> is a very good idea to get him to go at least once a day, but not

to prevent reabsorption of

> the metals.

>

> Try magnesium, choline and if she'll eat spicy foods, those too.

>

> > and we

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

to

> > do it yet.

>

> The major risk is you are seeing a doctor who doesn't understand

chelation and is likely to

> withhold it inappropriately, or give dangerous and harmful

instructions.

>

> > 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.

>

> This is the doctor's emotional problem, not your actual problem.

>

> > 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.

>

> Try using oral ALA properly - every 3 hours. It may also make her

poop.

>

> > 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?).

>

> No. That is the most dangerous, but anyone doing chelation wrong

(as your doctor had

> you doing above) can have them.

>

> > 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).

>

> Really the only 2 things that matter are ADMINSTRATION FREQUENCY OF

THE CHELATORS,

> and giving the same amount each time. Since there is no known

dosage equvalent, use

> either all TD or all oral in a round. If you feel like doing one

round oral and another TD,

> that is fine. Also if you feel like doing ALA by mouth and DMPS TD

that is fine

> (unnecessary but fine).

>

> > 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 " ?

>

> Yes. Because constipation isn't an issue.

>

> > 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.

>

> All Hg chelated by DMPS is excreted in the urine. None in the stool.

>

> > Perhaps it hands off the mercury to glutathione

> > which then takes it to the gut.

>

> No.

>

> > 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.

>

> S/he needs to learn more about chelation. THis is very very well

known and covered in the

> literature.

>

> > 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.

>

> This doctor is right.

>

> > Do we (1)keep chelating

>

> Yes.

>

> > but risk redistribution,

>

> The risk of redistribution is not from chelating a constipated

child, it is from following

> incorrect doctor's orders on how often to give the chelators.

>

> >(2)hold off on

> > chelation until her gut flows freely which may never happen

>

> You got it. Hold off forever or give it a try. ALA is preferred,

btw, since she has shown

> some response to it.

>

> > (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?

>

> All chelation protocols get around this since once in the gut the

mercury is not reabsorbed

> significantly. Constipation does not cause redistribution,

following improper chelation

> protocols does.

>

> Andy

>

>

>

>

>

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