Re: 2 bad days....

September 15, 2000

Audrey

I am in TOTAL agreement. People on the list say it is an effective chelator

if done every 4 hours, even at night, well we did that (shit) and that was

enough to put me in the hospital (with two of them mind you). I think you

are right, it is going to be slow and easy with all of this. One person

today suggested tardive dyskensia with s rhthemic tongue popping in and

out, but I have to think ever since the ALA, it has been the wierd thing

here. Perhaps there is a heavier burden of metals I am not looking at that

is overshadowing the mercury issue. On top of that little to no sulphar

pathways makes me quite suspicious that this must be worked on. I am going

to call the key pharmacist tomorrow, but will have to wait till the end of

the month, so far major ca ching this month has added up easily to 1,000 for

medical care for both (between ER visits, tests again, supplements argh).

When will this ever end or should I give up the ghost now?

Kathy

Re: 2 bad days....

>Dear Kathy,

> Regarding ALA, have you read something that specifically addresses the

> " stirring up & redepositing " vs. the much-reported value it has in

chelating

> & getting rid of mercury? I wish I knew an answer here because

>definitely responds negatively to ALA--even in small amounts of less than

>50mg. Of course, you know that each time has had ALA, his tongue &

>throat tingles, swells & hurts. Then his speech becomes extremely

difficult

>to understand because of those symptoms. His face also has those

sensations,

>and of course, the pain/tingling in the hands & feet and the headaches and

>episodal migraines. It also causes him to need more sulfate. Mercurious

>causes the same symptoms, but to a much lesser degree. I can't help but

>think that the stirring up of the mercury, regardless of whether or not it

is

>successfully EXITING the body, creates a higher detox burden on the body

for

>many other metals & undesirables. Doesn't ALA pull lead out of the cells

as

>well? Suddenly, too doggone much stuff is floating around--including the

>effects of dilantin withdrawal. The negative affects of ALA finally left

>about the 4th day off of it. I keep wondering if the mercury actually

>redeposits itself in these extremities or is it already there and just

>heightened already-present symptoms?

> If we find ourselves doing any more of the chelation experimentation,

we

>must promise ourselves that we will only use the tinnie-tiniest-microscopic

>amounts! I hope is doing better today.

> BTW, have you ordered some magnesium sulfate cream yet from at

Key

>Pharmacy? If not, you truly should. It will allow you to give him extra

>sulfate throughout the day, which does calm the tongue/hand/feet thing. I

>don't know that it would affect his seizures, but he could certainly feel

>better in case he needs sulfate at an inconvenient time for a bath.

>

>Love, Audrey

September 15, 2000

Kathy,

Have you done any lab tests to see what the metal load is? Did you

try using the ALA before doing the DMSA and checking urine results by

any chance?

(Cary, NC)

persistentC@...

Re: 2 bad days....

>Dear Kathy,

> Regarding ALA, have you read something that specifically

addresses the

> " stirring up & redepositing " vs. the much-reported value it has in

chelating

> & getting rid of mercury? I wish I knew an answer here because

>definitely responds negatively to ALA--even in small amounts of less

than

>50mg. Of course, you know that each time has had ALA, his

tongue &

>throat tingles, swells & hurts. Then his speech becomes extremely

difficult

>to understand because of those symptoms. His face also has those

sensations,

>and of course, the pain/tingling in the hands & feet and the

headaches and

>episodal migraines. It also causes him to need more sulfate.

Mercurious

>causes the same symptoms, but to a much lesser degree. I can't help

but

>think that the stirring up of the mercury, regardless of whether or

not it

is

>successfully EXITING the body, creates a higher detox burden on the

body

for

>many other metals & undesirables. Doesn't ALA pull lead out of the

cells

as

>well? Suddenly, too doggone much stuff is floating around--including

the

>effects of dilantin withdrawal. The negative affects of ALA finally

left

>about the 4th day off of it. I keep wondering if the mercury

actually

>redeposits itself in these extremities or is it already there and

just

>heightened already-present symptoms?

> If we find ourselves doing any more of the chelation

experimentation,

we

>must promise ourselves that we will only use the

tinnie-tiniest-microscopic

>amounts! I hope is doing better today.

> BTW, have you ordered some magnesium sulfate cream yet from

at

Key

>Pharmacy? If not, you truly should. It will allow you to give him

extra

>sulfate throughout the day, which does calm the tongue/hand/feet

thing. I

>don't know that it would affect his seizures, but he could certainly

feel

>better in case he needs sulfate at an inconvenient time for a bath.

>

>Love, Audrey

September 16, 2000

I had a small amount of ALA in one supplement that never showed anything but

good results, we did the analysis and clearly they definately need

chelation. The urine did dump alot of mercury in both, so I guess that was

one good thing that came from it, perhaps it was done too fast, but now I am

of the opinion that becuase they are PST, I cannot give ALA since it

increases cysteine (and a friend also states), and and are

cysteine poisoned already. These cannot be tolerated by most PST kids, and

if so then only in very small amounts, while doing everything else one can

to unload their system of toxins it speeds up Phase I liver enzymes making

his drugs less effective (which made his seizure medication go down the

toilet so to speak, and draining him of fatty acids, Prostaglandins,

steroids, testosterone, body alcohols, glycine, and retinol (vitamin A).

Additionally, it passes more partially metabolized toxins to the already

overloaded Phase II enzymes raising toxic levels and creating great amounts

of free radicals to damage cells further. I am sticking with my other

adjuncts as well as doing sequential therapy and also Ambrotose®, and other

things that don't mess with Phase I, or that build Phase II simultaneously.

I know of only one herb that does that, and I am not sure of what its phenol

content might be. It was recently impressed on me that flavonoids are

phenols. As desirable as these may be, they have to be limited with PST

kids. How many on the list has PST kids, and how did they do with ALA///

personal mails have illustrated that to me off list that some of you are

having trouble with it?

Kathy

Re: [ ] Re: 2 bad days....

>

>Kathy,

>

>Have you done any lab tests to see what the metal load is? Did you

>try using the ALA before doing the DMSA and checking urine results by

>any chance?

>

> (Cary, NC)

>persistentC@...

>

> Re: 2 bad days....

>

>>Dear Kathy,

>> Regarding ALA, have you read something that specifically

>addresses the

>> " stirring up & redepositing " vs. the much-reported value it has in

>chelating

>> & getting rid of mercury? I wish I knew an answer here because

>>definitely responds negatively to ALA--even in small amounts of less

>than

>>50mg. Of course, you know that each time has had ALA, his

>tongue &

>>throat tingles, swells & hurts. Then his speech becomes extremely

>difficult

>>to understand because of those symptoms. His face also has those

>sensations,

>>and of course, the pain/tingling in the hands & feet and the

>headaches and

>>episodal migraines. It also causes him to need more sulfate.

>Mercurious

>>causes the same symptoms, but to a much lesser degree. I can't help

>but

>>think that the stirring up of the mercury, regardless of whether or

>not it

>is

>>successfully EXITING the body, creates a higher detox burden on the

>body

>for

>>many other metals & undesirables. Doesn't ALA pull lead out of the

>cells

>as

>>well? Suddenly, too doggone much stuff is floating around--including

>the

>>effects of dilantin withdrawal. The negative affects of ALA finally

>left

>>about the 4th day off of it. I keep wondering if the mercury

>actually

>>redeposits itself in these extremities or is it already there and

>just

>>heightened already-present symptoms?

>> If we find ourselves doing any more of the chelation

>experimentation,

>we

>>must promise ourselves that we will only use the

>tinnie-tiniest-microscopic

>>amounts! I hope is doing better today.

>> BTW, have you ordered some magnesium sulfate cream yet from

> at

>Key

>>Pharmacy? If not, you truly should. It will allow you to give him

>extra

>>sulfate throughout the day, which does calm the tongue/hand/feet

>thing. I

>>don't know that it would affect his seizures, but he could certainly

>feel

>>better in case he needs sulfate at an inconvenient time for a bath.

>>

>>Love, Audrey

>

September 16, 2000

Kathy,

Here is my humble opinion... I offer it in a supportive fashion.

(Not to imply that you don't know what you are doing, or that anybody

else does not know.)

As I've told you before, Kenny is also a PST child. He reacts to THE

WORLD. Things that don't bother most kids are a BIG problem for him.

This is why I chose to do the chelation under Dr. Amy Holmes' expert

direction.

We aren't doing ANY guessing here. Lots of lab tests. We are just

doing the DMSA until we are SURE the mercury is out of the body. Then

we will go to ALA, and we will stick with the protocol described by

Andy on this list so many times which is to give ALA every 3-4 hours.

I believe this is one of those situations that you should NOT attempt

to do on your own. (Or, if you do, hopefully you have as much

background as somebody like Dr. Holmes or Andy.) And definitely, I

don't think it's a good idea to do this without LOTS and LOTS of lab

tests so you know EXACTLY what is happening.

I think Andy spoke about the two humped process. That is, the mercury

starts at a relatively low level in the urine when you first begin

chelating, then rises, then falls. Then you go on to the ALA + DMSA

and watch for the same hump. There is no way to know when that has

been accomplished unless you are doing the urine tests.

These are the thought processes I went through. Yes, I'd love to save

money, but I think sometimes you need to invest something to get the

returns you want.

(Cary, NC)

persistentC@...

Re: 2 bad days....

>

>>Dear Kathy,

>> Regarding ALA, have you read something that specifically

>addresses the

>> " stirring up & redepositing " vs. the much-reported value it has in

>chelating

>> & getting rid of mercury? I wish I knew an answer here because

>>definitely responds negatively to ALA--even in small amounts of less

>than

>>50mg. Of course, you know that each time has had ALA, his

>tongue &

>>throat tingles, swells & hurts. Then his speech becomes extremely

>difficult

>>to understand because of those symptoms. His face also has those

>sensations,

>>and of course, the pain/tingling in the hands & feet and the

>headaches and

>>episodal migraines. It also causes him to need more sulfate.

>Mercurious

>>causes the same symptoms, but to a much lesser degree. I can't help

>but

>>think that the stirring up of the mercury, regardless of whether or

>not it

>is

>>successfully EXITING the body, creates a higher detox burden on the

>body

>for

>>many other metals & undesirables. Doesn't ALA pull lead out of the

>cells

>as

>>well? Suddenly, too doggone much stuff is floating

around--including

>the

>>effects of dilantin withdrawal. The negative affects of ALA finally

>left

>>about the 4th day off of it. I keep wondering if the mercury

>actually

>>redeposits itself in these extremities or is it already there and

>just

>>heightened already-present symptoms?

>> If we find ourselves doing any more of the chelation

>experimentation,

>we

>>must promise ourselves that we will only use the

>tinnie-tiniest-microscopic

>>amounts! I hope is doing better today.

>> BTW, have you ordered some magnesium sulfate cream yet from

> at

>Key

>>Pharmacy? If not, you truly should. It will allow you to give him

>extra

>>sulfate throughout the day, which does calm the tongue/hand/feet

>thing. I

>>don't know that it would affect his seizures, but he could certainly

>feel

>>better in case he needs sulfate at an inconvenient time for a bath.

>>

>>Love, Audrey

>

September 16, 2000

Audrey

I am in agreement with all said here, makes sense, too much sense, and for

me, another piece of the puzzle. Talked to a new mom at the house today,

sounds like another (sept, she has two argh). Williss will probably

hear from me soon, one was about PICA, which one of the kids had, and also a

120 year old home with lead to the begeebees. I told mom to test for Lead

BUT QUICK. The mom also reports the floater stinkers tan colered vaccinosis

sandy induced shit! When will this every end and the INFORMATION

disseminated enough that every phsycian will " get it " and " get on the

program loop " ?

The tongue thing has not been seen EVER SINCE WE TOOK ALA OFF....hmmmmm? My

kids are indeed already cystein poisined so milk thistle is bye bye, the

jomar labs thing, bye bye and ambrotose for me all the way. Actually, let

me pay you for the cream please? I am looking forward to another outlay of

400.00 upfront (not counting homeopathic drainers) so this is a smidgen of a

tight month. We are talking Dilantin off of ryan at the moment and putting

him on tegretol, not sure if I am trading one nightmare for another, but it

will be a dream for me to finally take this stuff off. I think something is

being stirred up in this kids body, but where do I start? This kid was

dumped everything upon him to make his brain go haywire. That is why I am

looking into sequential therapy, becuase frankly, if I don't focus on the

timeline of damage I don't think I will ever recover him (which is mildly ok

too but god willing no). Keep the faith sister friend!

Kathy

Re: 2 bad days....

>Dear Kathy,

> I, too, have heard of tardive dyskensia being caused by drugs used to

>treat autism. The source was Bernie Rimland's ARRI newsletter a few years

>ago. There may be something on his website

>(http://www.autism.com/ari/contents.html) about it. Has the rythmic tongue

>movements stopped now that the ALA is out of his body? never had

>the rythmic movements, just the pain and swelling with ALA--I don't know if

>the two are connected. did have spasms, or tics, on the right side of

>his face, neck and arm a year ago (very sudden onset on 7/11/99) that at

it's

>worst was about 3 times a minute. It did have a rhythm, but I would not

>describe it as rhythmic--more like jolting. It gradually went away--most

>within the first month, but entirely after about 4 months. I don't know

for

>sure what caused it, but it was not ALA or any known (to me) metal

chelator.

> There are a few possibilities as to the cause of 's onset: 1) an

>over the counter anti-histimine that I had given him about a dozen times

>during the two weeks before the onset, 2) cessation of CoQ10 that I ran out

>of 4 days prior to onset, 3) cessation of Culturelle probiotic that I ran

out

>of 4 days prior to onset, 4) low B-12 as he had gotten a shot of it about a

>month prior which would have been wearing out, 5) the use of some Tylenol

or

>Ibuprofen due to headaches from allergies, and 6) a mysterious combination

of

>the above. As I re-read my notes from a year ago, I notice that during the

>months the tics were present, he also had very red eyes (which Williss

>recently told me was an indicator of cysteine toxicity--and I had been

giving

>him NAC!), headaches and pain, vision difficulties, ringing in the ears,

and

>increased swelling & tingling of the tongue.

> It's very interesting what you see when you look back on well-kept

notes

>after the fact and armed with more knowledge. Again, I don't know if

's

>spasms are similar to 's movements or if they have similar causes. But

I

>am convinced that 's were caused by a combination of things--perhaps

the

>first being his inability to clear toxins due to PST (which I did not know

>about of course). Whether it's Dilantin or Tylenol or anti-histimines (or

>even cysteine that can't be dealt with properly), these substances are an

>extra burden for our PST deficient kids. If B-12 is in short supply, make

>that a double whammy.

> Per Williss, I am giving 1,000mcg of B-12 twice a day sublingually

>and have not done shots for about a year. (Is folate the same as folic

>acid?) I give him 800mcg of folic acid twice a day. I have given

50mg

>of CoQ10 every day since about Sept '99 and am too scared to take him off

of

>it for fear it might have been involved in the spasms.

> Could the tongue thing for both our boys be connected to a B-12

>deficiency? Possibly. Could it be connected to stirred up mercury?

>Probably. Could it be worsened by sulfate deficof any kind screw iency?

>Most likely. Could blocking agents (drugs) screw things up further for our

>toxic boys? Most certainly.

> I am going to pick up a new batch of magnesium sulfate cream from

>on Monday. I don't think you should wait. I will send you about half of

it

>-- on me. You may need a prescription the first time so that could take

>longer still. He says he won't need any further prescriptions from me.

The

>cream can't hurt, but it may help.

> Don't give up....

>

>Love, Audrey

September 16, 2000