Re: Update - partial success

[Guest guest]

W.!

Great to read the update on you and your daughter!

[Guest guest]

Hi W.,

Glad to hear you and your daughter are doing well and making progress. So why

did you decide to do the French porphyrins test, since you were already

chelating and had done hair tests? Did your insurance pay for it?

I''m glad you posted on how the chelators feel for you. So many people say that

DMPS is better for them, but I don't think it is true for everyone. I have only

tried a couple rounds of DMPS, but I think I actually felt/feel better on DMSA.

I need to try it again though, and maybe play with the dosage. And I still

haven't tried ALA, so maybe that is what I need to be doing, like you.

Jackie

In frequent-dose-chelation weinert56 wrote:

Hi,

I have been just lurking for the past few months because we have been

very busy. We are about to exhaust COBRA insurance coverage and then

will have substantially worse coverage so we have been running around

trying to get everything done that we can before the good coverage ends.

Both my daughter (HFA, 10, 110 lbs) and I (51, 240 lbs) are still

chelating regularly. My daughter is now up to 20 mg ALA and 25 mg of

DMSA every 3 hours. She's done 40 rounds of ALA + either DMSA or DMPS

and maybe 60 rounds of either DMSA or DMPS alone since July '05. Her

most recent urine toxic metals showed mercury coming out in the red,

but no lead. Her hair testing still shows very high lead and copper.

Her French porphyrin test says she's moderately mercury toxic and has

is toxic with at least one of arsenic, pcbs or pesticides. (I can ask

Dean to post these results to his site if anyone is interested.) She

feels best on round and then has a bit of a slump for a day or two off

round. She continues to make lots of progress, but still has a long

way to go. She still has lots of problems with yeast, fatigue and

morning brain fog. We've tried various supplements for these, but

none seem to work particularly well. Her executive functioning is

still not good. She just had a thorough neuropsych exam which showed

tremendous gains in her perceptual (non-verbal) IQ, which went from 79

(3 years ago) to 100. Overall, the neuropsych says her diagnosis is

more like non-verbal learning disorder than HFA now. She has a cafe

au lait birthmark that covers most of one upper arm, which, in

combination with her autism, the neuropsych thinks is grounds for a

full work up for neurofibromatosis. We've tried to have blood drawn

for genetic testing, but the lab (Standford Medical Center) seemed

pretty incompetent and I'm not sure they put the sample in the right

kind of vial.

I'm doing 130 mg of ALA every 3 hours. I've done 70 rounds of ALA and

probably 70 rounds of either DMSA or DMPS alone since May '05. ALA

continues to feel really good. DMPS feels bad. The last time I tried

it I broke out in big welts. (Possible SJS?) DMSA feels slightly

bad. After an ALA only round, I feel slightly blah on the first day

off. I did the French porphyrin testing, too. It shows no evidence

of mercury toxicity but just like my daughter I'm toxic with at least

one of arsenic, pcbs or pesticides. It also showed that I have

pyroluria and very high oxidative stress. I'm feeling fairly good.

No joint pains anymore, much better mental clarity, much less

chemically sensitive. I'm doing an EPD-like allergy treatment and

elimination diet. I'm taking long term (3 months so far) minocycline,

which finally seems to be clearing up my acne rosacea, blepharitis and

possibly my high mycoplasma pneumoniae. I've been feeling low energy.

Astragalus, Co Q10 (400mg/day), Acetyl L-carnitine and Proboost (3

packets/day) seem to be helping. (Why do I only respond to the

expensive supplements?) I've managed to avoid catching colds that both

my husband and daughter have had recently, so I think my immunity has

improved.

I suspect my daughter needs at least a year more of chelation and that

I might not need much more than 6 more months. (Of course, if I'm up

in the middle of the night to dose her, I might as well keep going.)

Both of us might need to do saunas if the problems indicated on our

porphyrin tests are PCBs and/or pesticides rather than arsenic, since

as far as I know ALA, DMSA and DMPS will not help with PCBs or pesticides.

Both of us are still taking Armour, Cytomel and Cortef. Neither of us

can get our temps over 98 on any kind of regular basis.

W.

[Guest guest]

>

> Hi W.,

>

> Glad to hear you and your daughter are doing well and making

progress. So why did you decide to do the French porphyrins test,

since you were already chelating and had done hair tests?

She'd been chelating for over 2 years, no obvious improvement due to

that (she's also in a lot of therapies) and 2 previous UTM tests did

not show anything much coming out. We didn't do much ALA in the first

two years because of her high (2,000) hair copper. Nothing ever

worked to bring it down.

> Did your insurance pay for it?

I didn't order it through a doctor, so I never tried to submit it.

> I'm glad you posted on how the chelators feel for you. So many

people say that DMPS is better for them, but I don't think it is true

for everyone. I have only tried a couple rounds of DMPS, but I think

I actually felt/feel better on DMSA. I need to try it again though,

and maybe play with the dosage. And I still haven't tried ALA, so

maybe that is what I need to be doing, like you.

I speculate that perhaps the reason we don't do well on the DMPS is

arsenic. In other words, that DMSA doesn't get the arsenic moving and

DMPS does. However, Andy's Hair Test book says ALA is great for

arsenic, so DMPS does not seem to be necessary.

As for dosage, I can take 100 mg of DMSA every 3 hours without feeling

a thing, but 25 mg of DMPS every DMPS every 6 hours is pretty bad.

W.